1. society
2. welfare
3. social services
4. volunteering

Provincial
Hospice
Palliative Care
Volunteer Resource
Manual
Provincial Hospice Palliative
Care Volunteer Resource Manual
Sandi Jantzi, Sandra Murphy, Judy Simpson and The Hospice
Palliative Care Volunteer Project Team
June 2003
© Crown copyright, Province of Nova Scotia, 2003
May be reprinted with permission from Cancer Care Nova Scotia (1-866-599-2263).
Table of Contents
Preamble
Table of Contents
Introduction........................................................................................................................................ i
Acknowledgements............................................................................................................................ iii
How to Use the Resource Manual...................................................................................................... v
Section I
Making the Case for Volunteers ........................................................................................................
Making the Case for Manager of Volunteers.....................................................................................
Universal Declaration on Volunteering .............................................................................................
Universal Declaration on the Profession of Leading and Managing Volunteers ...............................
1
4
7
11
Section II
Volunteer Program Standards, Policies and Practice Introduction ....................................................
Principles ...........................................................................................................................................
Principle I...........................................................................................................................................
Principle II .........................................................................................................................................
Principle III ........................................................................................................................................
Principle IV........................................................................................................................................
Principle V .........................................................................................................................................
Principles and Standards for Volunteers in Palliative Care ...............................................................
Sample Policies..................................................................................................................................
Volunteer Resource Management Definitions...................................................................................
16
19
21
41
53
80
90
117
122
127
Section III
Orientation of Volunteers .................................................................................................................. 130
Section IV
Hospice Palliative Care Volunteer Training Program .......................................................................
Module I: Introduction to Hospice Palliative Care ............................................................................
Module II: Communication Skills......................................................................................................
Module III: Psychosocial Elements of Dying ....................................................................................
Module IV: Spiritual Issues ...............................................................................................................
Module V: Pain and Symptom Management .....................................................................................
Module VI: The Process of Dying .....................................................................................................
Module VII: Grief and Bereavement .................................................................................................
Module VIII: Family Centered Care..................................................................................................
Module IX: Caring for Yourself ........................................................................................................
Module X: Legal Issues in Palliative Care.........................................................................................
Module XI: Funeral Planning ............................................................................................................
Palliative Care Definitions .................................................................................................................
Certificate of Participation .................................................................................................................
160
165
202
227
248
277
305
327
360
382
400
402
408
436
Section V
Bibliography and References ............................................................................................................. 438
i
INTRODUCTION
Historically, hospice palliative care programs and services within Nova Scotia have
developed based on available local resources and to meet community needs, which has
led to considerable province-wide diversity. At the June 2001 Palliative Care Roundtable
hosted by Cancer Care Nova Scotia (CCNS) it was identified that volunteers, and the
clients and families they serve, would benefit from some standardization in training and
support. In addition to the lack of a standardized evidence-based core curriculum, it was
noted that there was inconsistency in terms of volunteer management and policies or
guidelines governing the involvement of volunteers throughout the province.
Just as the hospice palliative care community has been working to develop a more
consistent approach to care, we are also working to develop a more consistent approach
to hospice palliative care volunteer development. To that end, in 2002 CCNS and the
Nova Scotia Hospice Palliative Care Association (NSHPCA) entered into a partnership to
support a provincial volunteer development project to ensure that hospice palliative care
volunteers receive training and education and are supported in their efforts. Both
organizations recognize the centrality of volunteers to the delivery of excellent hospice
palliative care.
Sandra Murphy, a consultant with expertise in volunteer development, was hired to work
with CCNS and NSHPCA to facilitate the development of a manual covering issues such
as screening, education, policy development, recruitment and retention.
Over a nine-month period beginning in September 2002 a group of individuals with
hospice palliative care volunteer content expertise, representing the nine District Health
Authorities and the IWK, worked together as a project team. The team utilized past work
and built on the successes of current hospice palliative care volunteer programs
throughout the province and in Canada in order to develop:
• a Provincial Hospice Palliative Care Volunteer Resource Manual, which encompasses
all aspects of the volunteer development cycle from recruitment to training and
support as well as evaluation;
• a recognized Provincial Hospice Palliative Care Volunteer Training Program;
• a dissemination and training strategy for the project.
Team members are very enthusiastic about the potential of this project. They feel that
setting provincial standards will provide basic assistance in the increasingly specialized
area of hospice palliative care volunteerism, and serve as a benchmark against which
programs can be measured. This project will result in the establishment of a provincewide core curriculum for the training of hospice palliative care volunteers as well as a
more consistent approach to volunteer management and policies governing the
involvement of volunteers in Nova Scotia.
A provincial certificate of participation will be issued to all volunteers who participate in
the new Provincial Hospice Palliative Care Volunteer Training Program after its official
launch at the 14th Annual NSHPCA Conference and Annual General Meeting that was
held in May 2003.
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CCNS and the NSHPCA recognize current and past volunteers who have previously
participated in training that meets the standards for the new provincial program as
volunteers who have equivalent training. The certificate of participation received from
previous training is deemed equivalent to the new provincial certificate of participation.
The project team would like to express their gratitude to the following
organizations/programs for their support and/or use of their resource material:
• British Columbia Hospice Palliative Care Association, “The Caring Community: A
Field Book for Hospice Palliative Care Services” 1999;
• Canadian Hospice Palliative Care Association, “A Model to Guide Hospice Palliative
Care: Based on National Principals and Norms of Practice” March 2002;
• Canadian Hospice Palliative Care Association and Canadian Association for
Community Care, “Training Manual for Support Workers in Palliative Care” 1998;
• Cape Breton Health Care Complex Palliative Care Service;
• Circle of Care, “Palliative Care Visiting Homemaker Training Program” 1992;
• Colchester/East Hants Palliative Care Program;
• Eastern Shore Palliative Care Association;
• Lunenburg and Queens Palliative Care Program;
• Northwoodcare Incorporated;
• Pictou County Health Authority;
• QEII Health Science Centre Palliative Care Program;
• Strait Richmond Hospice Program;
• Victoria Hospice Society, “Palliative Care for Home Support Workers” 1995.
• Victorian Order of Nurses – Annapolis Valley Branch;
• Volunteer Canada, “Volunteer Management Intensive” 1999. (In particular materials
from the program, which came from the Community Service Council, Volunteer
Centre of Newfoundland and Labrador.)
In closing, CCNS and the NSHPCA wish to acknowledge all project team members and
thank them for their dedication to this very important work. The team worked well
together, shared and learned from each other’s experience. Both organizations are
optimistic that their joint efforts will advance volunteer development and management
within the hospice palliative care community in Nova Scotia.
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
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iii
Acknowledgements
Cancer Care Nova Scotia and the Nova Scotia Hospice Palliative Care Association
would like to thank the numerous individuals and organizations who generously provided
financial support, assistance with content, encouragement and guidance with formatting
and layout of the training program and development of this Hospice Palliative Care
Volunteer Resource Manual. Without their support, this manual would not have been
possible. We have tried to be as inclusive and accurate as possible. Any omission is
purely an error.
Project Partners
Cancer Care Nova Scotia
Judy Simpson, Project Manager
Nova Scotia Hospice Palliative Care Association
Sandi Jantzi, NSHPCA Board Representative
Project Consultant
Sandra Murphy, Researcher, Team Facilitator and Writer
Production Team
Cavell Ferguson, Typing, Layout and Graphic Design
Lisa Houghton, Copy Editor, Printing and Compiling
Organizations/Programs
British Columbia Hospice Palliative Care Association
Canadian Hospice Palliative Care Association, Ottawa, Ontario
Canadian Association of Community Care, Ottawa, Ontario
Cape Breton Health Care Complex Palliative Care Service
Circle of Care, North York, Ontario
Colchester/East Hants Palliative Care Program
Eastern Shore Palliative Care Association
Lunenburg and Queens Palliative Care Program
Northwoodcare Incorporated
Pictou County Health Authority
QEII Health Science Centre Palliative Care Program
Strait Richmond Hospice Program
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Victoria Hospice, Victoria, British Columbia
Victorian Order of Nurses – Annapolis Valley Branch
Volunteer Canada, Ottawa, Ontario
Project Team
Rose Anderson - Cape Breton District Health Authority
Sharon Barron - Cape Breton District Health Authority
Nancy Cameron - Guysborough Antigonish Strait Health Authority
Krista Canning - Colchester East Hants Health Authority
Janet Carver - South Shore Health
Lillian Cochrane - Annapolis Valley Health
Louise Coutreau - Annapolis Valley Health
Sheila D’Eon - South West Health
Catherine Doucet - South West Health
Elaine Finlay - South Shore Health
Gerry Helm - Cumberland Health Authority
Debbie Horne - Guysborough Antigonish Strait Health Authority
Dennis MacDonald - Pictou County Health Authority
Carol McKeen - Cape Breton District Health Authority
Linda Mills - Capital Health
Elinor Mullen - South West Health
Karen Newton - Capital Health
Melanie Parsons-Brown - Capital Health
David Sanford - Annapolis Valley Health
Maxine Thibault - Capital Health
Kimberley Widger - IWK Health Centre
Lynn Yetman - Colchester East Hants Health Authority
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v
HOW TO USE THE
RESOURCE MANUAL
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HOW TO USE THE RESOURCE MANUAL
The Provincial Hospice Palliative Care Volunteer Resource Manual has been developed
as a tool for use by Hospice Palliative Care Programs across Nova Scotia and more
particularly for the member of the Care Team who has responsibility for managing or
coordinating volunteers.
It is laid out in a manner that will enable the user to access it as a reference tool,
particularly on issues relating to the management of volunteers. It is also structured so
different sections; forms, resource sheets, etc. can be removed and copied and or adapted
for easy use or distribution. Some of the material has been repeated and put in different
formats for the varying usages to which it might be put. For example: The Standards of
Volunteer Management are integrated throughout the section on Principle, Standards,
Policies and Procedures, but there is also a section, which lists them all together for easy
reference.
Because almost every section of the resource manual has a different target audience, the
following is a brief overview of how each section can be used.
Making the Case for Volunteers in Hospice Palliative Care/Making the Case for the
Manager of Volunteer Resources as part of the Hospice Palliative Care Team:
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Who should use this section?
This is a tool for the Coordinator of Hospice Palliative Care or the person within the
Hospice Palliative Care Team who involves and supports volunteers to use to make the
argument for the centrality of volunteers in the care of the dying. It also makes the
argument for a paid member of the team designated to work with those volunteers.
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How is this section structured?
This section is laid out as a fact and information sheet for easy usage.
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Who is the audience?
The audience for this material are the persons in decision-making positions around
program structure, and financial and human resource allocations. It can also be used in
situations where others are questioning the need for or the importance of volunteers to the
system.
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How can it be used?
The materials here can be handed out or circulated at staff meetings; sent to CEO’s, board
members, government officials and politicians as an educational tool; or attached to a
budget submission. The Case for Volunteers can also be included in the volunteer
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
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manual or given to volunteers at orientation to underline their importance to the Care
Team
Principles, Standards, Policies and Procedures for Volunteers in Hospice Palliative
Care
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Who should use this section?
This section is meant almost solely for the use of the person responsible for developing
and managing the volunteer component of the hospice palliative care program.
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How is this section structured?
This section moves from general statements of principle to the practical procedures for
the volunteer program. Supporting five overriding principles for volunteers in hospice
palliative care are proposed program standards, with supporting policies and procedures.
Each procedure has a separate two or three page overview of basic information drawn
from standard writings and thinking on volunteer resource management. These are
backed up with a number of easy-to-use resource sheets, which include checklists, forms,
etc.
At the end of the section there is a compilation in list form of the principles and
standards, a compilation of sample policies, and a list of helpful definitions, which
include hospice palliative care volunteer programs from around the province.
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Who is the audience?
The information in this section is initially directed at the Manager of Volunteer
Resources but it will be helpful for other team members as well. Ultimately, it should
have an impact of the program volunteers and the people they serve.
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How can it be used?
The information can be used in developing a volunteer program that is grounded in firm
principles and standard,s and is set in a strong policy framework. Much of the material is
very practical in nature and will help managers save time by using an existing tool
instead of having to develop their own.
The policy section of the document is not meant to be adopted as is, however, but only as
a guide to policy issues which may need to be addressed in each program.
It is hoped that this section will lead to standardization in hospice palliative care
volunteer programs across Nova Scotia. The Nova Scotia Hospice Palliative Care
Association had previously approved the Standards, which have been used and adapted.
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An Orientation for Volunteers in Hospice Palliative Care
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Who should use this section?
This section is meant as a tool for the Manager of Volunteer Resources to use as they
prepare an orientation for their new volunteers.
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How is the section structured?
The orientation is laid out in workshop format with ideas for content, helpful exercises
etc. Each manager will need to bring their own program specific information to this
session, but where the information is general to the role of volunteers in hospice
palliative care, materials, resources, exercises and handouts are provided.
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Who is the audience?
The information in the orientation is ultimately directed at the volunteer.
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How can it be used?
The Manager of Volunteer Resources can use the orientation overview, as it is, to
orientate their volunteers. The material can also be made available to others who may be
involved in the orientation of new volunteers. Orientation is always specific to a
particular setting and program-specific, so material will need to be fully integrated into
the session.
Provincial Training Program for Volunteers in Hospice Palliative Care in Nova
Scotia
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Who should use this section?
This section is aimed at the person responsible for planning and organizing the training of
new volunteers in hospice palliative care and the individuals who may be recruited to
present the curriculum material.
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How is the information structured?
This section is laid out in nine separate modules - each representing from 1 ½ hours to 3
hours of training - on topics agreed to as being necessary for the volunteer in hospice
palliative care in Nova Scotia. Facilitators offering components will get a general
information sheet for facilitators and presenters, a specific overview sheet for each
module, an outline of the materials for presentation, copies of transparencies and
handouts, and extra resource materials either for their own use or for distribution. Each
module has an evaluation sheet, which can be copied for the use at the end of each
section. In addition, there are extra resources included around each topic, which may or
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
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ix
may not be used. The facilitators may use the materials as they are presented or adapt it
to their own training style, as long as the key components of each module are covered.
In addition to the nine modules, two-resource sheets for information sessions on legal
issues and funeral planning are included.
At the end of the modules is a list of definitions, which should be copied for distribution
to the participants. There is also an evaluation form that can be used for follow up
evaluation of the program after the volunteer has served for approximately six months.
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Who is the audience?
The material in the Provincial Training Program is directed entirely at people who wish
to become volunteers in hospice palliative care and is therefore aimed at their level.
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How can it be used?
This material can be used as is, by Managers of Volunteer Resources and the facilitators,
and the resource people they recruit to help train the volunteers. The topics and the
content have been reviewed and accepted by a project team composed of hospice
palliative care coordinators and managers of volunteer resources in hospice palliative
care from across Nova Scotia. Volunteers who complete the program will be entitled to
receive a provincial certificate of participation.
Many programs may not be at a stage where they can deliver the program fully but
having the curriculum should make it easier to introduce and will also provide a standard
to which all programs can strive.
Other sections
In addition to the sections mentioned, the resource manual will provide extra support
material, including stories, poems, quotes, prayers, jokes etc. which can be used in a
variety of ways. It also provides a list of available print, audio and video resources which
would be helpful in a hospice palliative care volunteer program, and around the
management of volunteers.
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1
MAKING THE CASE FOR VOLUNTEERS
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VOLUNTEERS IN HOSPICE PALLIATIVE CARE INITIATIVE
Making the Case for Volunteers
We all face the death of people important in our lives [loved ones] and we hope for quality end
of life care for them, and eventually for ourselves. Society, therefore, requires excellent hospice
palliative care services. An essential component of that service is the involvement of ordinary
citizens as volunteers.
“He listened to my frustration and just let me talk.”
“You are wonderful people, you were so good to her and the family. There are no words to
describe the good you do.”
Values statement:
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“Volunteering is a fundamental building block of civil society....{it} is the way in which:
human values of community, caring and serving can be sustained and strengthened”
Universal Declaration on Volunteering, International Association for Volunteer Effort,
2001.
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The involvement of volunteers in hospice palliative care programs is central to the
philosophy and principles of the hospice palliative care movement. Volunteers are the way
in which the community is involved at the most personal level in the care and support of the
dying.
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In many cases volunteers were the first in their communities to recognize the need for
hospice palliative care services, to advocate for it and to develop the resource base and
structure for its implementation. The delivery of many hospice palliative care services
continue to function and thrive because of community based voluntary groups and their
volunteers.
Volunteers are an essential component of the hospice palliative care team. Through their
involvement, they make concrete the desire and the commitment of Nova Scotian society and its
citizens to quality end of life care.
By their involvement hospice palliative care, volunteers:
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Provide consistency for clients, families and paid staff
Provide commitment to quality treatment and end of life care
Build relationships with clients and families which support them through difficult times
Enhance flexibility in the system of care
Provide a supplement to existing services
Advocate on behalf of the individual client and service
Undertake tasks which enhance quality of life for clients and their families
Work with the professional team to identify the needs of clients and families.
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Bring the community perspective to the service
Enhance resources for service delivery
Provide the invaluable “gift of time”
VOLUNTEERS ARE A VITAL PART OF THE HOSPICE PALLIATIVE CARE TEAM
Volunteers in hospice palliative care need to be supported and recognized. It is important
that the centrality of volunteers to hospice palliative care be acknowledged by everyone and
every structure that has anything to do with service delivery. These include:
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Policy makers
Government departments/federal /provincial
Funders
District Health Authorities
Community Health Boards
Administrators of service providers
Professional staff members and teams
Clients and families
Supporting volunteers in hospice palliative care involves:
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Development of an appropriate policy framework
Allocation of sufficient program funds and resources
Designation of a specific Manager of Volunteer Resources
Provision of adequate and standardized training
Recognizing volunteers in hospice palliative care involves:
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Reflection of their importance in the organizational chart
Inclusion in a meaningful way on the hospice palliative care team
Acknowledgment publicly of their contribution
Provision of adequate and standardized training
VOLUNTEERS GIVE THE FREE GIFT OF TIME, BUT THEY AREN’T FREE!
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MAKING THE CASE FOR THE
MANAGER OF VOLUNTEER RESOURCES
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VOLUNTEERS IN HOSPICE PALLIATIVE CARE INITIATIVE
Making the Case for the Manager of Volunteer Resources
To ensure that hospice palliative care volunteer services are of the highest quality, volunteers
must be properly educated and trained, supported, recognized and protected. A designated
Manager of Volunteer Resources is an essential component of the hospice palliative care team.
Values statement:
As the international professional association for volunteer leadership, the Association for
Volunteer Administration envisions a world in which the lives of individuals and communities
are improved by the positive impact of volunteer action.
“This vision can best be achieved when there are people who make it their primary
responsibility to provide leadership in the management of volunteer resources, whether in the
community or within organizations.” Universal Declaration On the Profession of Leading and
Managing Volunteers. Association for Volunteer Administration 2001.
The involvement of volunteers is central to the philosophy and principles of the hospice
palliative care movement. Best practices in volunteer management require that there be a
designated Manager of Volunteer Resources in order that the hospice palliative care volunteer
program be effective and provide quality service to the dying and their loved ones.
In order for the Manager of Volunteer Resources to serve effectively he/she in turn must be
properly trained, supported, recompensed and recognized.
By their involvement in hospice palliative care, Managers of Volunteer Resources:
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Develop volunteer programs that work for the benefit of clients, families of clients, and
the hospice palliative care program
Ensure that the appropriate policy framework and procedures are in place to protect the
program clients, the organization and the volunteer
Recruit appropriate volunteers to the program
Ensure the volunteers are properly screened and prepared for work with dying people
and their families
Help build the motivation and commitment of volunteers
Facilitate understanding and cooperation between paid staff and volunteers
Provide adequate supervision, feedback and support for volunteers
Maintain appropriate records
Ensure regular and appropriate recognition for the volunteer
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THE MANAGER OF VOLUNTEER RESOURCES IS A VITAL PART OF
THE HOSPICE PALLIATIVE CARE TEAM
Managers of Volunteer Resources in hospice palliative care need to be supported and
provided with the resources they need to do their jobs well. They need this support to come
from:
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Boards
Senior Management in Organizations
Budget Managers
Funders
Other professionals in the field
The community
Clients of the service
Supporting the Manager of Volunteer Resources for work in Hospice Palliative Care
involves:
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Hiring a person specifically trained for the role
Budgeting of adequate program resources
Provision of resources and opportunities for training and development
Recognizing the Manager of Volunteer Resources in Hospice Palliative Care involves:
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Ensuring a salary commensurate with the job responsibilities
Positioning appropriately on the organizational chart
Acknowledgment publicly of their importance to the volunteer program
INVESTING IN VOLUNTEER EFFORTS BUILDS PROGRAM CAPACITY
TO PROVIDE QUALITY CARE FOR THE DYING!
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UNIVERSAL DECLARATION ON VOLUNTEERING
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Universal Declaration on Volunteering
Volunteering is a fundamental building block of civil society. It brings to life the noblest
aspirations of humankind ---the pursuit of peace, freedom, opportunity, safety, and justice for
all people. In this era of globalization and continuous change, the world is becoming smaller,
more interdependent, and more complex. Volunteering - either through individual or group
action - is a way in which:
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Human values of community, caring, and serving can be sustained and strengthened;
Individuals can exercise their rights and responsibilities as members of communities,
while learning and growing throughout their lives, realizing their full human potential;
and,
Connections can be made across differences that push us apart so that we can live
together in healthy, sustainable communities, working together to provide innovative
solutions to our shared challenges and to shape our collective destinies.
At the dawn of the new millennium, volunteering is an essential element of all societies. It
turns into practical, effective action the declaration of the United Nations that "We, the
Peoples" have the power to change the world.
This Declaration supports the right of every woman and child to associate freely and to
volunteer regardless of their cultural and ethnic origin, religion, age, gender, and physical,
social or economic condition. All people in the world should have the right to freely offer
their time, talent, and energy to others and to their communities through individual and
collective action, without expectation of financial reward.
We seek the development of volunteering that:
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Elicits the involvement of the entire community in identifying and addressing its
problems;
Encourages and enables youth to make leadership through service a continuing part of
their lives;
Provides a voice for those who cannot speak for themselves;
Enables others to participate as volunteers;
Complements but does not substitute for responsible action by other sectors and the
efforts of paid workers;
Enables people to acquire new knowledge and skills and to fully develop their personal
potential, self-reliance and creativity;
Promotes family, community, national and global solidarity.
We believe that volunteers and the organizations and communities that they serve have a
shared responsibility to:
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Create environments in which volunteers have meaningful work that helps to achieve
agreed upon results;
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
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9
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Define the criteria for volunteer participation, including the conditions under which the
organization and the volunteer may end their commitment, and develop policies to guide
volunteer activity;
Provide appropriate protections against risks for volunteers and those they serve;
Provide volunteers with appropriate training, regular evaluation, and recognition;
Ensure access for all by removing physical, economic, social, and cultural barriers to
their participation.
Taking into account basic human rights as expressed in the United Nations Declaration on
Human Rights, the principles of volunteering and the responsibilities of volunteers and the
organizations in which they are involved, we call on:
All volunteers to proclaim their belief in volunteer action as a creative and mediating force
that:
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Builds healthy, sustainable communities that respect the dignity of all people;
Empowers people to exercise their rights as human beings and, thus, to improve their
lives;
Helps solve social, cultural, economic and environmental problems; and,
Builds a more humane and just society through worldwide cooperation.
The leaders of:
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All sectors to join together to create strong, visible, and effective local and national
"volunteer centers' as the primary leadership organizations for volunteering".
Government to ensure the rights of' all people to volunteer, remove ally legal barriers
to participation, to engage volunteers in its work, and to provide resources NGOs to
promote and support the effective mobilization and management of volunteers;
Businesses to encourage and facilitate the involvement of its workers in the community
as volunteers and to commit human and financial resources to develop the infrastructure
needed to support volunteering;
The media to tell the stories of volunteers and to provide information that encourages
and assists people to volunteer;
Education to encourage and assist people of all ages to volunteer, creating
opportunities for them to reflect on and learn from their service;
Religion to affirm volunteering as an appropriate response to the spiritual call to all
people to serve;
Non Government Organizations to create organizational environments that are
friendly to volunteers and to commit the human and financial resources that are required
to effectively engage volunteers.
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The United Nations to:
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Declare this to be the "Decade of Volunteers and Civil Society" in recognition of the
need to strengthen the institutions of free societies; and,
Recognize the "red V" as the universal symbol for volunteering.
International Association for Volunteer Effort challenges volunteers and leaders of all sectors
throughout the world to unite as partners to promote and support effective volunteering,
accessible to all, as a symbol of solidarity among al1 peoples and nations, IAVE invites the
global volunteer community to study, discuss, endorse and bring into being this Universal
Declaration on Volunteering.
Adopted by the international board of directors of IAVE - The International Association for
Volunteer Effort at its 16th World Volunteer Conference, Amsterdam, The Netherlands, January
2001, the International Year of Volunteers.
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UNIVERSAL DECLARATION ON THE PROFESSION
OF LEADING AND MANAGING VOLUNTEERS
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Universal Declaration on the Profession of Leading and Managing Volunteers
As the international professional association for volunteer leadership, the Association for
Volunteer Administration envisions a world in which the lives of individuals and communities
are improved by the positive impact of volunteer action.
This vision can best be achieved when there are people who make it their primary responsibility
to provide leadership in the management of volunteer resources, whether in the community or
within organizations.
These "leaders of volunteer resources"* optimize the impact of individual and collective
volunteer action to enhance the common good and enable humanitarian benefit. These leaders
are most effective when they have the respect and support of their communities and/or their
organizations, appropriate resources and the opportunity to continually develop their knowledge
and skills.
With the growth of volunteering worldwide there is recognition that the time and contribution of
volunteers must be respected, and that their work must benefit both volunteers and the causes
and organizations they serve.
Thus, we affirm and support the Universal Declaration on Volunteering adopted by IAVE - The
International Association for Volunteer Effort -, which states "Volunteering is a fundamental
building block of civil society. It brings to life the noblest aspirations of humankind - the pursuit
of peace, freedom, opportunity, safety and justice for all people.... At the dawn of the new
millennium, volunteering is an essential element of all societies." (The complete text is available
at www.iave.org.)
As volunteering has expanded globally, the need has emerged for strong leadership and
management of volunteers. Increasingly, this is recognized as a professional role.
*This phrase applies equally to terms like administrators, managers, coordinators and
directors of volunteers. For this declaration, the term "Director of Volunteers" was selected
to represent these many terms.
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Value and Contribution of Directors of Volunteers
Directors of Volunteers promote change, solve problems, and meet human needs by mobilizing
and managing volunteers for the greatest possible impact.
Directors of Volunteers aspire to:
•
Act in accordance with high professional standards.
•
Build commitment to a shared vision and mission.
•
Develop and match volunteer talents, motivations, time availability and differing
contributions with satisfying opportunities.
•
Guide volunteers to success in actions that are meaningful to both the individual and the
cause they serve.
•
Help develop and enhance an organizing framework for volunteering
Role
Directors of Volunteers mobilize and support volunteers to engage in effective action that
addresses specified needs.
As Directors of Volunteers we strive to:
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Be innovative agents for change and progress.
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Be passionate advocates for volunteering.
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Welcome diverse contributions and ideas.
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Develop trusting and positive work environments in which volunteers and other resources are
effectively engaged and empowered.
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Ensure the safety and security of volunteers.
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Develop networks and facilitate partnerships to achieve desired results.
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Be guided by, and committed to the goals and ideals of the cause/mission towards which we
are working and to continually expand our knowledge and skills.
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Communicate sensitively and accurately the context, rationale, and purpose of the work we
are doing.
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Learn from volunteers and others in order to improve the quality of our work.
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Core Beliefs
As Directors of Volunteers, we hold these beliefs and seek to demonstrate them in our
actions:
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We believe in the potential of people to make a difference.
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We believe in volunteering and its value to individuals and society.
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We believe that change and progress are possible.
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We believe that diversity in views and in voluntary contribution enriches our effort.
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We believe that tolerance and trust are fundamental to volunteering.
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We believe in the value of individual and collective action.
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We believe in the substantial added value represented by the effective planning, resourcing
and management of volunteers.
We also believe that we share the responsibility:
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To manage the contributions of volunteers with care and respect.
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To act with a sense of fairness and equity.
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To ensure our services are responsible and accountable.
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To demonstrate the practices of honesty and integrity.
The complexity of the problems the world faces reaffirms the power of volunteering as a way
to mobilize people to address those challenges.
In order for volunteering to have the greatest impact and to be as inclusive as possible, it must be
well planned, adequately resourced and effectively managed. This is the responsibility of
Directors of Volunteers.
They are most effective when their work is recognized and supported. Therefore, we call on
leaders in:
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Non-governmental and civil society organizations, to make volunteering integral to
achieving their missions and to elevate the role of volunteer directors within the
organization.
Government at all levels, to invest in the sustainable development of high quality volunteer
leadership and to model excellence in the management of volunteers.
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Business and the private sector, to understand the importance of volunteer management
and to assist volunteer-involving organizations in developing this capacity
Funders and donors, to support the commitment of resources to build the capacity of
volunteer management.
Education, to provide opportunities for leaders of volunteers to continually expand
their knowledge and skills.
We call upon Directors of Volunteers worldwide to accept this Declaration, to integrate and
embody it in our shared work, and to promote and encourage its adoption.
While we recognize that all countries in the world do not approach volunteer development in the
same way, this Declaration is intended to encourage all those concerned with the advancement of
this profession, to aspire to these statements.
Developed by the International Working Group on the Profession
Convened by the Association for Volunteer Administration Toronto,
Ontario Canada 2001
With representation from:
Argentina, Bangladesh, Canada, England, Hungary, Israel, Maurtius, Mexico,
Nepal, New Zealand, Scotland, United States
Association for Volunteer Administration
AVA
P.O. Box 32092 Richmond, VA 23294 USA Phone: 804-346-2266 Fax: 804-346-3318
E-mail: [email protected] Web: www.avaintl.org
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VOLUNTEER PROGRAM
PRINCIPLES, STANDARDS, POLICIES
AND PRACTICE
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VOLUNTEER PROGRAM
PRINCIPLES, STANDARDS, POLICIES, AND PRACTICE
Introduction:
This section of the resource kit is meant as a tool for Managers of Volunteers in Nova Scotia to
develop an effective hospice palliative care volunteer program. It draws on the work that was
done in developing standards of practice by the Nova Scotia Hospice Palliative Care Association.
These were previously endorsed by the Association’s members, reviewed and endorsed again
with some suggestions for revisions by the project team for the Volunteers in Palliative Care
Initiative.
The section also draws on the excellent work done by the British Columbia Hospice and
Palliative Care Association (BCHPCA) around Standards development for volunteer programs in
hospice palliative care and documented in its book The Caring Community: A Field book of
Hospice Palliative Care Volunteer Services, 1997. This work grows out of the CHPCA
Standards and is the basis for current work being done on a national level around standards for
hospice palliative care volunteer programs.
In line with the rest of this Resource Kit, the emphasis is not so much on reinventing the wheel
but on organizing the material for the use of hospice palliative care volunteer programs in Nova
Scotia in a manner that will make it user friendly, practical and will assist with its acceptance and
utilization in the diverse programs across the province. This in turn, will lead to a
standardization of practice while still allowing for flexibility to reflect local realities and needs.
How to Use This Section:
The section will start with a sheet of general principles (taken from the BCHPCA’s Caring
Community field book) then standards which grow out of the principles will be outlined starting
with more general standards and policies around volunteer program management and moving to
more specific standards and policies around practice. Each section will be laid out as follows,
although not all standards will require each element.
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Statement of Principle and Standard
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Policy Implications from the Principle
- The Principles are presented as framework policies for the hospice palliative care
volunteer program.
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Sample Policy(s) which relates to the Standard
- These will be samples only and should not be adopted by local programs without
involving all interested parties and making them reflect your own reality. They
will, however, serve to show where you may need to develop policy.
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Actions, which should flow out of the standard.
A brief general overview sheet on practice that flows out of the standard and
policy.
Resource sheets of forms check lists, etc. related to practice.
A separate listing for quick reference of the principles, standards, and sample
policies.
Definitions.
This section should give the person who is managing volunteers in hospice palliative care in
Nova Scotia a very quick reference tool for use in developing and maintaining an effective
volunteer program which is rooted in national and provincial standards, firmly grounded in a
policy framework, and includes the basics of sound practice. It will by no means be
comprehensive, but direction will be given for users to seek out other sources of assistance.
It should be noted that everyone who is working as a Manager of Volunteer Resources in
Hospice Palliative Care in Nova Scotia should have completed at minimum a basic training
program in volunteer resource management.
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PRINCIPLES
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GENERAL PRINCIPLES OF HOSPICE PALLIATIVE CARE
VOLUNTEER SERVICE IN NOVA SCOTIA
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PRINCIPLE I: Volunteer Services are an essential component of the hospice palliative
care programs in Nova Scotia.
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PRINCIPLE II: Volunteer services are an essential component of the hospice palliative
care interdisciplinary team, providing unique resources for patient, family and team
members, and representing one form of the community’s response to the program.
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PRINCIPLE III: The hospice palliative care organization provides resources for
volunteer support.
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PRINCIPLE IV: Volunteers who are directly involved in patient/family hospice
palliative care complete a comprehensive and standardized training program.
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PRINCIPLE V: The volunteer program operates in a framework of quality assurance
and quality improvement.
The principles are derived from the general principles of hospice palliative care and are adapted
from the Victoria Hospice Association’s Caring Community field book’ Principles for Volunteer
Service in Palliative Care.
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PRINCIPLE I
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PRINCIPLE I:
VOLUNTEER SERVICES ARE AN ESSENTIAL COMPONENT OF THE
HOSPICE PALLIATIVE CARE PROGRAMS IN NOVA SCOTIA.
STANDARD 1: The hospice palliative care volunteer program is reflected clearly in the
organization’s budget.
STANDARD 2: The hospice palliative care volunteer program is positioned appropriately in
the organizational chart.
STANDARD 3: The hospice palliative care volunteer program is adequately supported with
paid staff and a specifically designated Manager of Volunteer Resources.
STANDARD 4: The hospice palliative care volunteer program is carefully planned and
developed within the context of the organization’s own plan and to externally recognized
standards of management of volunteers.
Please note:
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Standards 1, 2 and 3 are developed by and directed primarily at the board and senior
management of the organization. They are framework policies.
ƒ Standard 4 was developed by board and senior staff and the Manager of Volunteer
Resources. This is an operation policy.
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POLICY
PRINCIPLE I:
VOLUNTEER SERVICES ARE AN ESSENTIAL COMPONENT OF THE
HOSPICE PALLIATIVE CARE PROGRAMS IN NOVA SCOTIA.
Policy implication: If this principle was adopted by concerned provincial organizations,
district health authorities and the boards of organizations, which deliver hospice palliative care
services, it is in effect a policy that encapsulates “the principles, values and beliefs of the
organization.” Graff 1999.
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STANDARD 1:
The hospice palliative care volunteer program is reflected clearly in the
delivery organization’s budget.
Sample policy statement: The
insert name of program shows its commitment to the hospice
palliative care volunteer program by budgeting appropriate financial resources.
ACTION: The board and senior management of the delivery agency has budgeted adequately
for the volunteer program and this is reflected in the budget in a manner that is consistent with
other program budgets within the organization.
ACTION: The Coordinator of the Hospice Palliative Care Program should be able to break out
the costs for the volunteer component of the program to reflect the true cost of operations.
Included in these calculations should be:
Personnel Costs: Including salary of the Manager of Volunteer Resources, and portion of
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other staff salaries dedicated to the volunteer program, including that of the coordinator.
ƒ Operating Costs: Including space, equipment, supplies, out of pocket expenses, training
costs, insurance, recognition costs.
ACTION: The Coordinator of the Hospice Palliative Care Program and/or the Manager of
Volunteer Resources should be able to state in monetary terms, to board, senior management and
funders, the value of the time given to the palliative care delivery system by volunteers. (Please
note that this is only one of the means of showing the value of the volunteer program and should
never be used as the main justification.)
STANDARD 2:
The hospice palliative care volunteer is positioned appropriately in the
organizational chart.
Sample policy statement: None needed.
ACTION: The board and senior management have reviewed all organizational charts, and if
the volunteer component is not included or is not adequately positioned in the chart, ensures that
changes are made.
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STANDARD 3:
The hospice palliative care volunteer program is adequately supported with
paid staff and a specifically designated Manager of Volunteer Resources.
Sample policy statement: The
insert name of program underlines its commitment to excellence
and clients and program standards by ensuring that a designated Manager of Volunteer
Resources is part of the hospice palliative care team.
ACTION: The board and senior management of the organization is educated about the
importance of the role of Manager of Volunteer Resources and the unique and demanding set of
criteria for this position. They commit themselves to the need for this role in their program and
seek resources to fund it on a permanent basis. Introducing them to the Canadian Code for
Volunteer Involvement would be a means of education.
See the Advocacy Section of the Resource Kit “Making the Case for the Manager of
Volunteer Resources”
STANDARD 4:
The hospice palliative care volunteer program is carefully planned and
developed within the context of the organization’s own plan and to externally
recognized standards of management of volunteers.
Sample policy statement: In line with its commitment to providing quality hospice palliative
care service the insert name of program ensures that the volunteer component is properly planned.
ACTION: See the following Planning Overview and resources, the Policy Development for
Volunteer Programs Overview and resources and Job Design Overview and resources, which
follow.
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PRACTICE
Planning
IA Planning a Volunteer Program
ƒ Resource Sheets
1. The Planning Process
2. Planning Checklist
Formatted: Bullets and
Numbering
IB Policy Development For Volunteer Programs
ƒ Resource Sheets
3. Policy Development for Hospice Palliative Care Volunteer Programs
Formatted: Bullets and
Numbering
IC Position Design and Description
ƒ Resource Sheets
4. Sample Position Description
5. Position Description
6. Volunteer Position Description
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Numbering
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OVERVIEW SHEET IA
Planning
Planning a Volunteer Program
The need for volunteer programs to be carefully planned cannot be over emphasized. This focus
on planning is particularly important to programs such as hospice palliative care where
volunteers are being called on to play a very important role with a clients group, which is
particularly vulnerable. It is only through careful planning that a volunteer program can be well
integrated into the hospice palliative care team structure and the quality of program delivery can
be assured and assessed.
Careful planning helps to ensure the following:
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That the program will be consistent with the mission, goals and objectives of the
organization.
That the program is fully accepted by professional paid staff and clients and their families.
That clearly defined outcomes are in place against which the program can be monitored and
assessed.
That the program is set in the appropriate policy framework.
That the program has the resources it needs to be effective.
That the program will be realistic about what is possible within its resource limitations.
That appropriate risk management structures are in place to protect the clients and their
families, the delivery organization and the volunteers themselves. (Screening issues.)
When should planning occur?:
Planning should take place when a new volunteer program is being considered or developed by
the hospice palliative care program. Planning should also take place if the organization is trying
to regularize, formalize, change or restructure an existing program. Planning should be an
ongoing process informed by program evaluation.
Planning should be undertaken by:
Involving the people who will be affected by the volunteer program is the best possible way to
ensure its full acceptance in the organization. The responsibility for the final plan will probably
lie with the Coordinator of the Hospice Palliative Care Program and/or the Manager of Volunteer
Resources. If it is a new program, a small committee could be formed to oversee the planning.
Approval of the plan may lie at a higher level in the organization.
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The elements of the planning process are:
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Assessment
Resource preparation
Program objectives and operational plan development
Program implementation
Program monitoring
Outcome assessment
(See Resource Sheet 1 for a complete overview of the planning cycle.)
Key issues for the planning process:
During planning, whether it is for a new hospice palliative care program, or an existing one, the
development of the policy framework and the design of volunteer positions are crucial in terms of
risk management and screening issues. Therefore, this section on planning has separate resource
sheets and materials devoted to these.
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RESOURCE SHEET 1
The Planning Process
Assessment:
To ensure that the proposed hospice palliative care volunteer program is consistent with the
overall mission and goals of the program and delivery organization.
To find out if the organization, paid staff and clients will benefit from the program and will
welcome and support it if it is introduced or restructured.
To identify the existing assets/resources that can be built on and if they are sufficient to ensure
the success of the program.
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Revisit organizational and program goals and proposed outcomes
Describe target population and programs to be provided
Determine if proposed/revised program will fill a gap (clients)
Assets review
Describe the support available from powers that be
Describe other available assets - time, money, space, existing volunteers, etc.
Determine assets limitations
Resource preparation:
This is the stage at which the person(s) who needs to be involved (the champion for the program)
and get others involved.
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Select who is to be primarily involved in the program (and how) e.g. – staff person, staff
committee, or volunteer committee
Train any staff/volunteers who will be involved in the program, on management of
volunteers within the hospice palliative care context
Orientate hospice palliative care team members on the proposed program
Allocate program resources and facilities
Program goals, outcomes and operational plan development:
Describe what the program hopes to achieve in terms of outcomes and how these will be
accomplished.
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Establish expected program outcomes (include time lines, indicators of success)
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Determine program activities and sequences
Develop policy framework for the program
Determine volunteer roles
Determine paid staff activities vis-à-vis the volunteer program
Develop volunteer positions and write job descriptions
Develop program monitoring and evaluation system
Develop volunteer manual
Develop localized structure for delivery of the Provincial Hospice Palliative Care Volunteer
Training Program
Program implementation:
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Recruit volunteers
Interview and do intake screening on volunteers
Orientate and train volunteers
Place/match volunteers
Recognize volunteers
Program monitoring:
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Supervise and support volunteers
Evaluate and give feed-back to volunteers
Identify need for additional resources/training, etc.
Take corrective action
Maintain program records
Prepare report on the program
Outcome assessment:
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Assess the extent that proposed outcomes were achieved
Assess the effectiveness of the program in meeting its goals
Assess the impact of the program on the clients of hospice palliative care program
Assess the impact on the volunteers
Final report
Process starts again….
Adapted from Making the Most of Volunteer Resources training program of the Community
Services Council Volunteer Centre, St. John’s NL and as used in the Volunteer Management
Intensive Program of Volunteer Canada.
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RESOURCE SHEET 2
Planning Checklist
Ask yourself the following when planning your program. You may decide some are not relevant
in your situation, but at least make that decision intentional rather than an oversight!
Have we considered.........?
Yes
No
Support from the powers that be
How many volunteers we'll need
When we'll need them to volunteer
Coordinator - who?
Risk management issues
Written policies
Policy on volunteer involvement
Position descriptions
Budget
Recruitment strategy
Interview and placement procedure
System for checking references, etc.
Written volunteer/agency agreement or letter of understanding
Monitoring and evaluation system
Orientation session
Orientation manual
Who will do the training
Probationary period for volunteers
Evaluation meetings
System for tracking volunteer hours
Reimbursement of volunteer expenses
Necessary space
Necessary supplies
Storage of information
Formal volunteer exit interview
Annual volunteer recognition event
What information is needed to evaluate the program
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It looks daunting, doesn't it? But resist the impulse to quickly initiate a volunteer program operate on the principle "Do it right the first time - it's easier than having to do it over again".
And remember, there is something in this toolkit to help you with all of the above.
From – Volunteers, A Growing Need, Community Access Program Manual
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OVERVIEW SHEET IB
Planning
Policy Development for Volunteer Programs
The importance of having a policy framework at every level to support and define the work of
organizations has never been more important than it is today. Policy defines what is important in
an organization on a philosophical and values basis, reinforces important and acceptable
behavior and proscribes unaccepted and prohibited actions in an organization. Organizations,
and programs within organizations, which are not supported by policy are like a rudderless ship,
which will eventually be driven by sea and wind to founder on the rocks.
The values around delivery of hospice palliative care services by volunteers and the vulnerability
of the clients of the service makes it imperative that this program be supported by carefully
developed policies. The Manager of Volunteer Resources will play an important role in
advocating for appropriate policy for the hospice palliative care volunteer program and in its
development.
Some of the reasons for policy:
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To clarify values and beliefs both internally and externally
To ensure continuity for the program
To ensure fairness and equity
To communicate expectations
To support consistency in service delivery
To specify standards
To state rules
Policies can be directed externally so that those outside the organization understand that quality
and excellence are important to the hospice palliative care volunteer program. Sound policies
directed externally can help garner community support for the program. They will make the idea
of being involved with your program more attractive to potential volunteers, community partners
and funders.
Policies directed internally will serve as educational tools for volunteers in learning the values
and beliefs in which their actions and service as volunteers should be grounded. They will serve
as a clear framework against which they can make decisions around their actions in the program
and clarify what they can and cannot do. Policies will provide assurance that the program is well
run and that they are supported in what they are doing.
A strong policy framework is the basis of your program’s risk management efforts.
A strong policy framework supports quality volunteer programs.
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What is policy?
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A principle in which a position is taken
A plan of action which states specific steps and procedures
Something that applies to everyone in the organization/program
A rule that states a boundary
A rule that implies consequences if broken
Policy can be implicit because of tradition and long-term approaches in an organization, but in
this day and age it is important for volunteer programs to have written policies.
“The matter of policy development for volunteer services has become urgent. The formula is
quite simple: the greater the degree of responsibility of volunteer work itself, the greater the need
for guidelines to ensure safety; the greater the need for policies.” Graff, Management of
Volunteer Services in Canada, 1999.
This section draws heavily on the work of Linda Graff.
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RESOURCE SHEET 3
Policy Development for Hospice Palliative Care Volunteer Programs
How to write policy:
Be concise: Keep the policy as short as possible without compromising meaning.
Be clear: Make certain that what is meant is stated and that it is understood by the audience
for which it is intended. Use clear language and scrap the jargon.
Be directive: Tell people clearly what is expected. Don’t equivocate. The most important
policies should be the most strongly worded.
Be polite: Even when wording policies, firmly remember you audience is volunteers not
criminals. Don’t word them as if you expect the volunteers to want to ignore them.
Be positive: Design policies, whenever possible, to be motivational and inspiring. Emphasize
the scope for action within the policy rather than what lies outside the policy boundaries.
Be creative: Use pictures, diagrams, graphs and other tools to make your policy manual
attractive and to reinforce the material for the volunteer.
Adapted from: “ Policies for Volunteer Services” from Management of Volunteer Services in
Canada, 1999 and By Definition 1993, both by Linda Graff.
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OVERVIEW SHEET IC
Planning
Position Design and Descriptions
One of the essential elements of risk management for any volunteer program is to design
volunteer positions with the view to eliminating, reducing or controlling risk. In hospice
palliative care the volunteer is involved in direct contact, often in unsupervised settings, with
clients and their family members who are extremely vulnerable because of their circumstances.
Increasingly, position design is seen as a powerful tool for volunteer motivation and retention.
This happens when positions have the right elements of challenge, achievement, responsibility
and internal reinforcement or recognition.
Position design is not the same as developing position or job descriptions. Position design is an
exercise that the Manager of Volunteer Resources and others involved in the planning of the
volunteer program must undertake to help guarantee the integration of the volunteer work into
that of the rest of the hospice palliative care team. Lines of responsibility and reporting are made
realistic and workable, the identification of potential risks is done with a view to appropriate risk
management, and that the position is tailored to reinforce volunteer motivation.
The position description grows out of the process of position design and will define for the
volunteer and for those he/she works for and with activities, expectations around the position,
level of responsibility, reporting structures, etc.
Position design is:
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A pre-requisite for successful integration of the volunteer
A risk management tool
Means of reinforcing motivation and assuring retention
A position description includes:
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Position title
Purpose/function/rationale
Specific duties in terms of expected results - qualifications/skills/interests
Time commitments
Training/orientation requirements - lines of responsibility
Authority for decision making - location of the activities
Special conditions/parameters/risk management directives
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A position description is a tool that helps determine:
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Who and where to recruit
Screening concerns around intake
What training is necessary
What level of supervision is needed
What will be addressed in the performance review
What should be recognized
A position description is a tool for use by:
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The manager of volunteer resources
The volunteer
Staff who interact with the volunteer
Clients of the service
A position description can also be used as a contract between the agency and the volunteer. This is
increasingly recognized as a part of appropriate management of volunteers. It should be recognized
that not all programs are comfortable with this.
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RESOURCE SHEET 4
Sample Position Description
Title: Patient and Family Support Volunteer
Purpose: To be with patients who are terminally ill and their families to provide an atmosphere
of caring and support.
Duties:
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Listen to or converse with patient or family. Sometimes just to be with the patient in
silence.
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Read to the patient, write letters, sing for or with the patient, listen to music, arrange for
videos or games.
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Take patients for walks, or to another floor (beauty salon, smoking room, lounge).
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Do errands for patients, accompany discharged patients, or go with them to other
departments.
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Assist staff with special requests.
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Assist with organizing special events---birthdays, anniversaries, and bereavement teas.
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Take care of "coffee corner" for patients.
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Perform small services for patients, hair care, manicure, hand massage, foot massage, back
massage.
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Be with patient at time of death if family is not available.
Time commitment: Four hours a week for one year.
Qualifications: Mature, stable personality, good listening skills, dependable, sense of humour,
able to work as a team member with family and staff.
Training and Skills Development: Must attend the standardized provincial hospice palliative
care volunteer training program in Nova Scotia, and additional in-service as recommenced by the
Manager of Volunteer Resources.
Lines of responsibility: To the Manager of Volunteer Resources and the palliative care team.
Authority for decision-making: The volunteer can make decisions within the framework of the
duties outlined above. Any other requests for service, advise or support from patients, family
members or other staff should be taken to the Manager of Volunteer Resources. If the volunteer
has any doubts about any duty this should also be discussed.
Location: The volunteer will generally work within the confines of the hospice palliative care
unit of the Insert name of program. The patient should only be taken off the unit at the request of the
appropriate staff person. Any planned excursions outside the hospital will be discussed and
arranged in advance with the Manager of Volunteer Resources.
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Parameters: The volunteer will maintain confidentiality around their work with patients,
families and within the hospice palliative care unit. The volunteer will follow other guidelines
around the position as provided.
Other: Meal passes will be provided for the volunteer if they are in the hospital over a
mealtime. Parking passes are provided for the volunteer.
Position approval:
Date:
Volunteer's signature:
Manager of Volunteer Resources signature:
Further guidelines attached
Refer to Volunteer Manual for further information
Adapted and compiled from: BCHPCA, Caring Community, 1997; and: Volunteer Canada, A
Matter of Design, 2001.
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RESOURCE SHEET 5
Position Description
Title:
Purpose:
Duties:
Parameters around position:
Skills/Qualities required:
Lines of responsibility:
Time required:
Other requirements (references, training, etc.):
Other (location, benefits, conditions, etc.):
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RESOURCE SHEET 6
Volunteer Position Description
Title/Position:
Goal of position:
Sample activities:
1.
2.
3.
4.
Timeframe:
Length of commitment:
Estimated total hours:
Scheduling:
† At discretion of volunteer
† Needed ___________________________________________________________________
Worksite:
Qualifications sought:
1.
2.
3.
Benefits:
1.
2.
Staff contact:
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PRINCIPLE II
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PRINCIPLE II:
VOLUNTEER SERVICES ARE AN ESSENTIAL COMPONENT OF THE
HOSPICE PALLIATIVE CARE INTERDISCIPLINARY TEAM,
PROVIDING UNIQUE RESOURCES FOR PATIENT, FAMILY AND
TEAM MEMBERS, AND REPRESENTING ONE FORM OF THE
COMMUNITIES RESPONSE TO THE PROGRAM.
STANDARD 5: The hospice palliative care team has a fully integrated volunteer component
that is understood and supported by other team members.
STANDARD 6: The hospice palliative care volunteer program is structured to harmonize
and comply with human resource structures and collective bargaining agreements within the
organization.
STANDARD 7: The Manager of Volunteer Resources for hospice palliative care will recruit
volunteers representative of community diversity.
Please note:
ƒ
ƒ
ƒ
Standard 5 is one directed at a board and senior management level. It can also be
considered a statement of framework policy.
Standard 6 concerns board and senior management, human resources personnel and union
leaders (if your organization is unionized) and the Manager of Volunteer Resources.
Standard 7 primarily concerns the Manager of Volunteer Resources. It concerns operational
issues.
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POLICY
PRINCIPLE II:
VOLUNTEER SERVICES ARE AN ESSENTIAL COMPONENT OF THE
HOSPICE PALLIATIVE CARE INTERDISCIPLINARY TEAM,
PROVIDING UNIQUE RESOURCES FOR PATIENT, FAMILY AND
TEAM MEMBERS, AND REPRESENTING ONE FORM OF
COMMUNITY RESPONSE TO THE PROGRAM.
Policy implication: This principal, if adopted by boards and senior management in hospice
palliative care delivery agencies if in effect a policy. It works in tandem with Principle I as the
defining framework policy for volunteers in hospice palliative care.
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STANDARD 5:
The hospice palliative care team has a fully integrated volunteer component
that is understood and supported by other team members.
Sample policy statement: The insert name of program is committed to the full involvement of
volunteers from the community as members of the hospice palliative care team. Team members
receive the information and support needed to ensure their full understanding and acceptance of
community volunteers as partners in their work.
ACTION: Hospice palliative care team members receive orientation on the role of volunteers
and their importance to the hospice palliative care team. In addition, they receive training related
to their role in supporting and involving volunteers with the work of the team.
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RESOURCE SHEET 7
Guidelines for working together in harmony
These guidelines came from a collaborative effort of volunteer management, volunteers and
labour representatives, which occurred in Newfoundland under the auspices of the Community
Services Council, Volunteer Centre. It has been used and adapted by the Victoria Hospice
Society.
1. Any change in the level of voluntary service should be preceded by full consultation
among all interested parties.
2. Agreements on their nature and extent of additions to voluntary activity should be made
widely known to interested parties at all levels.
3. The roles of volunteers and staff should complement each other; they should not be
threatening to each other in any way.
4. The action of volunteers should not threaten the livelihood of staff.
5. Volunteer workers should not normally receive financial reward.
6. There should be recognized machinery for the resolution of problems between paid staff
and volunteers.
7. An agreement that governs the action of volunteers in the event of job action by labour
unions should be in place before such a situation arises.
Adapted from “Working together.... in Harmony: Volunteer/Management/Union Guidelines.
Community Services Council, Volunteer Centre.
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STANDARD 6:
The hospice palliative care volunteer program is structured to harmonize and
comply with paid human resource structures and collective bargaining
agreements within the organization.
Sample policy statement: See Resource Sheet 7 for sample guidelines that can be adapted
and adopted as policy statements.
ACTION: Policies are in place that governs the relationships between volunteers and staff
within the organization. (See Resource Sheet 7)
STANDARD 7:
The Manager of Volunteer Resources for hospice palliative care recruits
volunteers who are representative of community diversity.
Sample policy statement: The above standard can also be seen as a framework policy
statement on recruitment.
Operational policies could include:
Screening:
All recruitment messages of the insert name of program clearly state that the volunteers will be
appropriately screened with risk management in mind.
Affirmative action:
ƒ
The hospice palliative care volunteer program of insert area is committed to the involvement
of volunteers who reflect the diversity of clients and families who utilize the program.
ACTION: See the following Recruitment Overview Sheet.
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PRACTICE
Recruitment
ƒ Resource Sheets
II Recruitment
7. Guidelines for Working Together in Harmony
8. Techniques for Recruitment Volunteers
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Formatted: Bullets and
Numbering
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OVERVIEW SHEET II
Recruitment
Recruitment of volunteers is often seen as the number one issue for Managers of Volunteer
Resources. Despite this, many do not give the time and attention to developing recruitment
strategies that meet the needs of their programs. Managers of volunteer resources in hospice
palliative care recognize that their main resource for recruiting new volunteers is their existing
volunteer programs. If, however, the make up of the volunteer program is lacking in diversity
and the client population is not, then new diverse and creative methods of recruitment should be
tried.
What is recruitment?
Recruitment is basically marketing. You are trying to convince a portion of the population that
they would like to give your program their time and skills to provide quality service for the dying
and their families.
What must be considered?
IMAGE:
ƒ
What is the perception of your service or agency in the community where you are hoping to
recruit volunteers? Here you must think of the delivery agency’s image as well as the image
of your own program and the field of hospice palliative care. You may have to work to
overcome a negative or neutral image or build on a positive image. Canadian society’s
tendency to deny the fact of death will be part of this.
THE FOUR “P’s” OF MARKETING
1. Product: In going out to the community looking for volunteers, you will be looking
for those who are interested in the cause of hospice palliative care and the job that they
can take on to support that cause. So in your messages emphasis your Mission as well
as the Position Description.
2. Price: Everyone who comes to you, as a volunteer will pay a price for getting involved.
This price will include time, loss of opportunity for other activities, emotional pain, etc.
If the price is too great the people you want won’t step forward, or if they do, they
may not stay.
3. Place: The hospice palliative care volunteer program will have a place in the
community that is unique. This includes its physical location, but also its special niche in
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the continuum of other volunteer programs. Your message should target volunteers whom
you can reach both physically and emotionally.
4. Promotion: Select the best methods for reaching your target audiences.
Things to remember:
ƒ
ƒ
ƒ
ƒ
Target your approach to reach a specific audience you want to attract (if you need more
male volunteers don’t go to women’s groups).
Tailor you message with screening in mind. Don’t give the impression that you will accept
all applicants.
Budget your resources. Find out what works for other groups who successfully recruit. If
you have a small amount to spend on promotions research, ensure you will get the best
bang for your buck.
Word of mouth is often the best method to recruit.
AND
ƒ
Never, never recruit until you are prepared to act on the response.
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RESOURCE SHEET 8
Techniques for Recruitment Volunteers:
A checklist
Select the procedures most applicable to you:
A = Most Important
√
C = Secondary Importance
#
Technique
1.
2.
Place a newspaper ad
Do a TV or radio spot
(Public Service Announcement)
Have your volunteers appear on talk
shows (radio & TV)
Get newspaper coverage (stories about
your work and individual volunteers,
etc.)
Hold volunteer recruitment parties at
your offices
Have open lunches or bag lunches
Have invitational lunches
Give presentations to community groups
Be on the emergency speaker’s list for
local community groups.
Send out flyers
Put flyers on “key posting areas” around
town
Put flyers in appropriate shops
Put ads where likely volunteers
congregate:
- Malls
- Supermarkets
- Community & Senior Centres
- Churches
- Employment Centre
- Student Unions
- Libraries
Encourage volunteers to recruit friends
Video or slide show
Technique
Rate A, B,
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
√
B = Medium Importance
#
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Rate A, B, Person
responsible/note
C
Person
June 2003
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C
16.
17.
18.
19.
20.
21.
22.
23.
24.
25.
26.
27.
28.
29.
30.
31.
32.
33.
34.
responsible/note
Start a speaker’s bureau (volunteers
trained to give presentations for you)
Pass out recruitment brochures
Put ads in membership newsletters
Contact local resources:
- Volunteer Centre
- Association of Retired Persons
- Retired Teachers Association
- Services Clubs (Rotary Elks, etc.)
- Canadian Association of University
Women
- Parent/Teacher Association, Home
& School Association
- YWCA & YMCA
- Boy Scouts/Girl Guides
- Boys & Girls Clubs
Student Associations
Recruitment booths at local schools
Telethons (contact volunteer centre)
Volunteer Fairs (contact volunteer
centre)
Put photos of your volunteers into local
newspapers with news articles
Recruit with personal letters from
volunteers to candidates
Hold teas and dinners
Recruit over the telephone
Contact unions and their local offices
Talk to public relations people at local
large businesses about putting ads in
their periodicals
Contact local corporations about
employee volunteer initiatives
Contact professional societies for names
of likely volunteers
Ask successful volunteer organizations
how they recruit their volunteers, then
follow their examples
Hold press parties
Train representatives from corporations,
unions and minorities to recruit for you
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√
#
Technique
35.
Hold recruitment drives with other
organizations in the community
Hold recruitment meetings based on the
Tupperware model (people gather in
friend’s home for recruitment “parties”)
Develop an agency prospectus for
potential board members
Form recruitment teams of current
volunteers
Recruit respected community leaders to
serve as recruiters for your agency
36.
37.
38.
39.
Rate A, B, Person
responsible/note
C
Adapted from checklist produced by Public Management Institute.
From: Community Services Council, Volunteer Centre.
Making The Most Of Volunteer Resources
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PRINCIPLE III
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PRINCIPLE III:
THE HOSPICE PALLIATIVE CARE ORGANIZATION PROVIDES
RESOURCES FOR VOLUNTEER SUPPORT.
STANDARD 8: A realistic budget is provided for the hospice palliative care volunteer
program. (See Standard 1 and Making the Case for a Manager of Volunteer Resources.)
STANDARD 9: Resources are available so that prospective hospice palliative care volunteers
are assessed as to his/her desire, ability and suitability to fit productively within the program.
STANDARD 10: The screening process will provide the prospective volunteer with clear
information about the philosophy, goals of the particular hospice palliative care service and the
roles and expectations of the volunteer.
STANDARD 11: Volunteers in hospice palliative care will be supported through supervision
by:
ƒ
ƒ
ƒ
ƒ
ƒ
Assigning them appropriately within the program.
Providing them with ongoing supervision as they serve as part of the palliative care team.
Empowering them to act, within the limits of their role, to achieve the desired support for
patients and families.
Regular checking of the volunteer’s progress by the Manager of Volunteer Resources
Services.
Allowing the volunteer to give and receive regular feedback about their role and
performance.
Please Note:
STANDARDS 9 - 11 primarily concern the Manager of Volunteer Resources although the
resource issue is one that primarily involves the board and senior staff.
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POLICY
PRINCIPLE III:
THE HOSPICE PALLIATIVE CARE ORGANIZATION PROVIDES
RESOURCES FOR VOLUNTEER SUPPORT
Policy implication: This can be seen as another of the framework policies underpinning the
involvement of volunteers in hospice palliative care.
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STANDARD 8:
This is quite similar to STANDARD 1.
See sample policy statement and action.
STANDARD 9:
Resources are available so that the prospective hospice palliative care
volunteers are assessed for his/her desire and ability to fit productively within
the program.
Sample policy statement: All prospective volunteers will be assessed, to the standards
established by the National Education Campaign on Screening of Volunteer Canada, to ensure
their suitability for the palliative care setting, service to clients and their families, and in order to
control risk and ensure the best quality of service by the organization.
ACTION: The Manager of Volunteer Resources will assess the “fit” of the volunteer with
clients and the organization. (See Resource Sheet 9 for the NSHPCA’s accepted elements of
screening at intake and Overview Sheet IIIA on Screening at Intake).
STANDARD 10:
The screening process will provide the prospective volunteer with clear
information about the philosophy, goals of the particular hospice palliative
care service and the role and expectations of the volunteer.
Sample policy statement: The prospective volunteer will be provided with sufficient
information at the intake stage so that he/she can make an informed decision as to whether they
will proceed with the application.
ACTION: The Manager of Volunteer Resources will provide the prospective volunteer with
information on the program and its expectations. In some cases this will involve the prospective
volunteer in attending the standardized volunteer training program before a decision to proceed
is taken.
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STANDARD 11:
Volunteers in hospice palliative care will be supported through supervision...
Sample policy statement: The hospice palliative care program of insert name of program ensures
that volunteers receive the support they need from assigned staff, that their regular activities are
monitored and that appropriate feedback is given. This is perceived as an important component
of risk management as well as a basic right of volunteers.
ACTION: See Overview Sheet IIIB on Supervision.
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PRACTICE
Intake/Oversight
IIIA Screening at Intake
ƒ Resource Sheets
- 9. Nova Scotia Hospice and Palliative Care Association Screening Procedures
-
10. Cape Breton Healthcare Complex Palliative Care Service
11. Interviewing Consideration
12. Non-directive Interviewing Suggestions
13. Victorian Order of Nurses – Annapolis Valley Branch Interview Form for
Volunteer Placement
14. Reference Checks
15. Police Record Checks
ƒ Resource Sheets
- 16. Supervision
IIIB Supervision
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OVERVIEW SHEET IIIA
Intake/Oversight
Screening at intake
Many would perceive the concept of screening as applying only to the intake or selection stage
for new volunteers. Recent work, by Volunteer Canada and the National Education Campaign on
Screening, expands the definition of screening to “Ten Steps”, the first of which is taken before
there is any thought of recruitment and the last of which is completed when the volunteer leaves
the organization.
The intake phase of screening, however, is extremely important and in terms of risk management
crucial. The burden for this phase of screening also lies firmly on the shoulders of the Manager
of Volunteer Resources.
There are four steps to consider in terms of screening at the intake phase:
1.
2.
3.
4.
Application form
Interviews
Reference checks
Police record checks
The intake phase should also afford the Manager of Volunteer Resources the opportunity to give
the prospective hospice palliative care volunteer enough information about the program so that
they may chose to screen themselves out.
Application forms: A well-designed application form is an important tool for screening. Not
only will it give you the information needed for the volunteer records, such as contact
information, but it also can help the volunteers think through their motivations for applying to be
a volunteer in hospice palliative care and what expectations they might have. This in turn will
give the Manager of Volunteer Resources much helpful information for use in the interview with
the volunteer. The application can also be a place where you, through the questions asked, begin
to outline expectations. The application can also be a tool for giving explanations about certain
expectations, such as references and police record checks.
Interviews: The interview is an extremely important tool for screening for intake. It is an
opportunity to obtain more concrete information about the volunteer, assess the person’s
interpersonal skills, emotional stability and attitudes, delve deeper into motivations, and to feed
important information back to the prospective volunteer. Managers of Volunteer Resources in
hospice palliative care need to be skilled interviewers and should have some training and
experience in this area.
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Reference checks: Some feel that the reference check can be the most important tool in the
Volunteer Manager’s kit at the time of selection. It is very important that references are checked
and that the right questions are asked of the person giving the reference. Questions should only
be based on the requirements of the position the volunteer will be undertaking. Remember that
no matter what their effectiveness as a screening tool, they are increasingly a public expectation.
Police Record Checks (PRC): There is still some debate about the need for police record
checks as well as around their efficacy for screening prospective volunteers in hospice palliative
care. The rule of thumb at the moment is that the greater the risk in the position the volunteer is
undertaking, the greater the need to do them. If hospice palliative care volunteers are working
one-to-one in an unsupervised setting with a client, then the position would dictate that a PRC be
undertaken. If the volunteer is never unsupervised in their dealing with the client, then perhaps a
PRC is not needed. There is no across the board answer to whether to require PRC’s. Each
program must decide on its own in consultation with its lawyer. What is true, is that PRC’s do
not constitute screening
REMEMBER THAT IT IS ALWAYS BETTER TO CATCH A POTENTIAL PROBLEM AT
THE INTAKE STAGE THAN IT IS TO DEAL WITH IT LATER.
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RESOURCE SHEET 9
Nova Scotia Hospice and Palliative Care Association Screening Procedures
Will include:
1. Reference checks
2. Personal interviews
3. Police record checks
The characteristics of a successful volunteer include:
1.
2.
3.
4.
5.
6.
7.
8.
9.
Motivation to serve and interact with others
Emotional maturity
Tolerance
Empathy
Flexibility
Dependability
Good listening skills
Ability to maintain standards of confidentiality
A non-judgmental attitude towards spiritual and cultural diversity
Factors that could preclude the acceptance of the volunteer include:
1. Significant losses within the year
2. Clearly unresolved past losses
3. Active treatment of cancer other life threatening illness
Factors of personal vulnerability to the stress of hospice palliative care
include:
1.
2.
3.
4.
Lack of social support
Unresolved past losses
Concurrent family difficulties
History of depressive illness
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RESOURCE SHEET 10
Cape Breton Healthcare Complex
Hospice Palliative Care Service
Volunteer Application Form
Date of Application:
Name:
Address:
Postal Code:
Occupation:
Contact in Case of Emergency: Name
Relationship:
Telephone: (H)
(W)
Telephone (H)
(W)
1. What is your understanding of Hospice Palliative Care?
_____________________________________________________________________________________
2. What is your reason for applying to Hospice Palliative Care?
_____________________________________________________________________________________
3. What do you think you will gain from volunteering? _______________________________________
_____________________________________________________________________________________
4. What do your friends and family think of you being a Hospice Palliative Care Volunteer?
_____________________________________________________________________________________
5. What do you do in your leisure time? ___________________________________________________
_____________________________________________________________________________________
6. What strengths do you feel you have to offer? ____________________________________________
_____________________________________________________________________________________
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7. Are you available throughout the entire year?
Yes ______
No ______
If “No”, what months/weeks would you not be available? ______________________________________
8. Do you have your own transportation?
Yes ______
No ______Occasionally ______
9. Do you have any driving convictions?
Yes ______
No ______
Health:
10. (a) How is your own health? __________________________________________________________
(b) Have you ever had any serious health issues? __________________________________________
(c) Do you have any physical/health restrictions? __________________________________________
11. The Volunteer Coordinator has a monthly meeting (1 hour) with Volunteers between September and
June. Volunteers are required to attend at least four (4) of these educational sessions a year. Are you
willing to do this?
Yes ______
No ______
Yes _____
No ______
Involvement with sickness:
12. Has anyone close to you died?
Please list the two most significant deaths in your lifetime:
1. Relationship ___________________________________ Year _________________
2. Relationship ___________________________________ Year _________________
13. How often did you see these patients from the time of diagnosis until death?
First Patient
Second Patient
†
2 – 3 times
†
2 – 3 times
†
Monthly
†
Monthly
†
Weekly
†
Weekly
†
Daily
†
Daily
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14. Have you ever done personal care for a patient?
Yes ______
No _______
References:
15. Please list three (3) references whom we may contact. (Please include last employer, previous
volunteer reference, as well as a personal or family reference.)
Name (of Employer): ______________________________________________________________
Address: ________________________________________________________________________
________________________________________________________________________________
Telephone: ______________________________________________________________________
Name (of Volunteer Activity): _______________________________________________________
Address: ________________________________________________________________________
________________________________________________________________________________
Telephone: ______________________________________________________________________
Name (of Personal Reference): _______________________________________________________
Address: ________________________________________________________________________
________________________________________________________________________________
Telephone: ______________________________________________________________________
I give the Cape Breton Regional Palliative Care Service permission to contact the names I have given in
order to obtain a reference.
__________________________________________________
Signature of Volunteer
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RESOURCE SHEET 11
VICTORIAN ORDER OF NURSES TRI-COUNT BRANCH
SUPPORTIVE CARE INTERVIEW FORM -PC
Applicant:_______________________________________________Date:___________________
Interviewers: __________________________________
_____________________________________________
_____________________________________________
Provide an overview of the Supportive Care Program. Give applicant job description. Questions???
1.
Why did you choose to volunteer with VON?
2.
How did you learn of the Volunteer Program?
3.
Please tell us about any of your experiences with physically challenged/senior/memory
impaired/palliative persons.
4.
What volunteer work have you done in the past? What did you like/not like about it?
5.
What volunteer work are you presently doing? What do you like/not like about it?
6.
What is your present occupation? Tell us about it.
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7.
What do you consider to be your personal strengths?
8.
In what areas do you feel you have limitations and how do you deal with them?
9.
What knowledge/skills do you feel are important when visiting physically
challenged/senior/memory impaired/terminally-ill clients?
10.
Some of our clients have physical limitations and disabilities and require assistive
devices, such as canes or walkers. How do you feel about assisting this client group?
11.
The role of the VON home volunteer can be a very isolating one due to the
independent nature of the role. How do you think you would function in this role?
12.
The VON cares for people in all sorts of homes. Sometimes there is conflict, anger
and/or frustration with what has happened in life. You may also encounter situations
of poverty. How do you think you would work in these situations?
13.
Religion may or may not be important to the client. How comfortable would you be if
a client does/does not want to discuss religious beliefs?
14.
Are you willing to attend training sessions/in-services and Support Group meetings?
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15.
How do you deal with a stressful situation? How do you deal with stress on an ongoing basis?
16.
Have you experienced a recent loss? What was your relationship? _______________________
How recent? __________________________
Do you feel you have worked through your loss? ____________ Accepted it?
______________
How did you contribute support?
What support would you have liked at the time?
17.
Have you ever been present at the time of a death? _____________What were your feelings?
Questions???
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RESOURCE SHEET 12
Interviewing Considerations
Personal
- Taking stock
- Emphasis on listening
- Clearing the deck of other considerations
Pre Interview
- Understanding purpose
- Placement
- Specific jobs
- Preparing questions
- Obtaining and reviewing information on interviewee
(e.g. resume, application form, referral source)
- Information and materials on agency
Atmosphere/Site
- Accessibility
- Comfortable and friendly
- Privacy
Interview
- Break ice and establish rapport
- Ensure that questions are asked that give you specific
information on background skills, knowledge, times
available, etc.
- Ensure questions are asked which establish attitudes,
motivation, values, etc.
Closure
- Ensure interviewee’s questions are answered
- Ensure interviewee knows what will happen next and
when
Follow up
- Undertake post interview work such as reference
checks, etc.
- Contact prospective volunteer to confirm acceptance,
explain rejection, make arrangements for next steps
RESOURCE SHEET 13
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Non-directive interviewing suggestions
1. What have you enjoyed most in previous assignments? What have you enjoyed
least? (Attitudes)
2. What kind of people do you work with best as co-workers? What kind of people are
you most interested in as clients and why? Are there types of people you feel you
would be unable to work with? (Interpersonal Relations)
3. What would you consider to be an ideal volunteer job for you to meet your best
characteristics? (Motivation and Values)
4. What things have you done that have given you the greatest satisfaction?
(Motivation and Values)
5. Why are you interested in doing volunteer work? What are your long-range
objectives? (Motivation)
6. What do you do in your leisure time? (Values)
7. What is your "energy" or "activity level" and how would you describe your work
habits? (Work Habits)
8. Thinking back, what are the most significant decisions you have made in your life
and how do you feel about them? (Decision Making)
9. What makes you really angry - on the job or at home - and how do you deal with this
anger? (Emotional Stability)
10. Tell me about your family. (Emotional Stability: car, spouse, children, etc.)
11. What has been the biggest disappointment in your life? (Emotional Stability)
12. Describe your temperament. What do you like best about yourself? If you could,
what would you improve? (Emotional Stability)
Making The Most Of Volunteer Resources
RESOURCE SHEET 14
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Victorian Order Of Nurses – Annapolis Valley Branch interview form for
volunteer placement
Applicant ______________________________
Date _________________
Interviewers ____________________________
____________________________
____________________________
____________________________
Interview Questions
Response Criteria
1) Tell Volunteer about
Give VON Annapolis Valley
VON Annapolis Valley
Branch brochure and answer
Branch and its program.
any questions pertaining
Comments
thereto.
2) Why did you choose to
Reasons for applying are
volunteer with VON?
valid, reinforced by comments
throughout interview.
3) How did you learn of the
Volunteer recalls how/where
volunteer program?
they learned of the program.
4) Please tell us about your
Indicates experience with one
experiences with physically-
of these client groups
challenged/senior/memory-
referenced by details of
impaired/palliative persons.
experience.
5) What volunteer work
Able to identify what was
have you done in the past?
liked or not liked about any
Are you presently doing?
volunteer work done.
What did you like or not like
about it?
6) What is your present
Comments indicate
occupation? What do you
respondent’s interests,
like/dislike about the work
strengths and weaknesses.
you do?
Interview Questions
Response Criteria
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7) What do you consider to
Able to identify strengths.
be your personal strengths?
8) In what areas do you feel
Able to identify current
you have limitations and
limitations and strategies to
how do you deal with them?
develop self further.
9) What knowledge/skills do
Identifies listening and
you feel are important when
communications skills
visiting senior/memory-
promoting independence and
impaired or terminally ill
knowledge re: aging process;
clients?
sensitive to the needs of
terminally ill.
10) Some of our clients have
Comments indicate
physical limitations and
willingness and comfort in
disabilities and require
assisting clients and taking
assistive devices such as
them out of their homes.
canes or walkers. How do
you feel about assisting this
client group who may wish
to go on excursions within
the community?
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Interview Questions
11) The role of the VON
Response Criteria
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Has functioned
home volunteer can be a
independently or
very isolating one due to the
indicates a willingness
independent nature of the
to.
role. How do you think you
-
Comments indicate
would function in this
adequate confidence in
situation? (Coordinator
knowledge/skills.
should reinforce the
-
Comments
Comments indicate
importance of reporting
willingness to seek
back to agency any client
appropriate support.
concerns/issues).
12) The VON cares for
Respects individual’s
people in all sorts of home.
family’s values; shows a
Sometimes there is conflict,
willingness to work in a
anger and/or frustration with
variety of settings.
what has happened in life.
You may also encounter
situations of poverty. How
do you think you would
work in these situations?
13) Religion may/may not
Understands the importance
be important to the clients.
of listening to clients and
How comfortable would you
not imposing their own
be if a client does not want
beliefs.
to discuss religious beliefs?
Conversely, how
comfortable would you be if
a client wished to discuss
religious beliefs?
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Interview Questions
Response Criteria
14) Are you willing to
Shows a willingness to learn
attend training sessions/in-
and participate.
Comments
services and Support Group
meetings?
15) How do you deal with a
Comments indicate ability to
stressful situation initially?
deal with stressful situation
How do you deal with stress
immediately and effectively.
on an on-going basis?
Long-term strategies such as
hobbies, interests, and
healthy lifestyles were
mentioned.
16) Have you experienced a
Comments show ability to
recent loss? What was you
communicate personal loss
relationship to that person?
and how it was dealt with.
_______________________
Has not experienced recent
How recent? ____________
bereavement or has dealt
Do you feel you have
with recent bereavement
worked through your loss?
effectively.
Accepted it?
How did you contribute
support?
What support would you
have liked at the time?
Have you ever been present
at the time of a death?
What were your feelings?
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RESOURCE SHEET 15
Reference Checks
Applicants name:
References:
Name:
Home#:
Work#:
Relationship to Applicant:
1.
2.
3.
Interviewed by:
Date:
Name of reference:
Describe position applied for and what expectations of the volunteer are:
1. How long have you known the applicant?
2. In what capacity?
3. What are the applicant’s strengths?
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con’t 2/
4. Is the applicant reliable?
5. How does he/she handle supervision?
6. Can he/she work independently?
7. How does she/he handle confidential information?
8. How does he/she handle stress and personal emotion?
9. Describe his/her relationship with a vulnerable person.
10. Is there anything you feel we should be aware of in accepting this person for this
position?
Thank you for your time and help!
Adapted from Red Cross Abuse Prevention Services as used in Taking Care: Screening for
Community Support Organizations. Volunteer Canada
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RESOURCE SHEET 16
Police Record Checks
Organizations that use volunteers as part of their service are obligated to take reasonable
measures to ensure the safety of their clients. The Canadian Association of Volunteers Bureau
and Centers recommends that volunteers be required to complete a Police Record Check. Since
our clients come under the category of vulnerable persons, the Cape Breton Regional Palliative
Care Service requires a police check of persons selected to be a volunteer to work with
terminally ill patients.
A Police Record Check will be done by either the local police or the RCMP. It consists of a
check of police records to determine if the applicant has a criminal record. It will report
information about serious criminal charges and convictions, probation and other court orders such
as those, which forbid some people from being around children under the age of 14. The police
force will release some or all information to the Palliative Care Service or may simply identify that
there is or is not a record with Canadian Police Information Center.
For the Palliative Care Service to have the right to request a Police Record Check, the potential
volunteer must complete the attached forms. There will be no fee for this service.
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OVERVIEW SHEET IIIB
Intake/Oversight
Supervision
Supervision is one of the most important tools that a Manager of Volunteer Resources has to
support and motivate volunteers. It is also a key element in risk management and as such is seen
as one of the steps in the “Ten Steps” of screening.
The Manager of Volunteer Resources, in the supervisory role, has responsibility for practical
(task) functions and for emotional (maintenance) functions with the volunteers. (See resource
sheet.) In other words, the supervisor has the responsibility to see that the volunteer has the
information, training, and understanding to undertake the task and the emotional back up to
maintain involvement over the long haul. Maintenance functions will be particularly important
with volunteers in the hospice palliative care setting.
Supervision and other staff:
The Manager of Volunteer Resources, in the supervisory role, must also educate and support
other staff on the hospice palliative care team who provide day-to-day supervision and direction
to the volunteers. As well as monitoring the activities of volunteers, the supervisor must also
monitor what is happening between the hospice palliative care volunteer and other members of
the team. Depending on the size and scope of the volunteer program and how it is structured, the
Manager of Volunteer Resources may find the balance of their time supporting and monitoring
others who provide day-to-day supervision of volunteers.
On-site supervision:
Volunteers in some hospice palliative care programs function entirely within the institution
where the hospice palliative care program is delivered. They are rarely ever on their own in
dealing with patients and their families. The supervisory issues for the Manager of Volunteer
Resources in this situation are fairly straightforward, although staff acceptance and
understanding of the volunteer component is crucial. Risk management is easy and identification
of potential concerns and problems is relatively easy to spot for the vigilant manager.
Off-site supervision:
Volunteers, who provide support to clients of the hospice palliative care program who are at
home, present more challenges for Managers of Volunteer Resources around supervision.
Clearly such involvement presents much greater issues around risk management then on-site
involvement under immediate staff scrutiny.
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Managers of Volunteers supervising volunteers in this setting must have sound accountability
structures in place which include:
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Ensuring the volunteers fully understand their roles.
Ensuring the volunteers fully understand all policies and procedures governing their role.
Ensuring the client and their family understand the volunteer role and the parameters
around it.
Undertaking regular follow up by phone and in person with the client and volunteer.
Checking with other team members on how they have observed the volunteer’s activities.
Having a formal reporting structure in place (e.g. written reports).
Unscheduled spot checks when volunteer is visiting the client’s home.
Authority for decision-making:
Managers of Volunteers must be very clear with volunteers about areas where they have
permission to make decisions on their own with the client and areas where they should always
consult with the hospice palliative care team. New volunteers should have little authority for
decision-making until they have proved themselves reliable and competent. Longer-term
volunteers who have proved themselves should be allowed more authority for decision-making,
but again they must understand the areas in which they may not in any circumstances act alone.
Handling problems:
The number one rule in dealing with supervisory problems is to act promptly but not in anger. It
is much easier to act, and the intervention will be more successful, if the intervention is backed
up by well-documented facts. (See resource sheet.)
Letting a volunteer go:
From time to time the Manager of Volunteer Resources may be forced to ask a volunteer to leave
the program. Such a decision cannot be taken lightly and is made much easier if the proper
systems have been in place to monitor, record and give feedback on volunteer performance. A
probationary term for new volunteers can be invaluable in limiting the need for dismissal of a
long term volunteer. It should be acknowledged that even people who have served well and
faithfully over the long term might burn out. In many cases the volunteer and the Manager of
Volunteer Resources can work out a mutually agreeable parting of the ways that will leave the
volunteer free to leave without guilt. If this does not work, however, sometimes the volunteer
must be “fired”. (See resource sheet.)
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RESOURCE SHEET 17
Supervision
FIRING A VOLUNTEER
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Do it privately
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Be quick and direct
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Be compassionate but firm
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Announce/do not argue
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Do not counsel
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Be prepared to end the discussion
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Follow up
Adapted from Sue Vinyard.
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PRINCIPLE IV
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PRINCIPLE IV:
VOLUNTEERS WHO ARE DIRECTLY INVOLVED IN
PATIENT/FAMILY CARE COMPLETE A COMPREHENSIVE AND
STANDARDIZED TRAINING PROGRAM.
STANDARD 12: The hospice palliative volunteer program standardized curriculum involves
the volunteers in a minimum of twenty (20) to twenty five (25) hours of training in the following
core components:
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Introduction to Hospice Palliative Care
Communication Skills
Psycho/Social Elements of Dying/Stages of Dying
Spiritual Issues
Pain and Symptom Management
The Process of Dying
Grief and Bereavement
Family Centered Care
Caring For Yourself
STANDARD 13: The individual hospice palliative care program will ensure additional
program specific orientation and training as deemed appropriate.
Sample policy statement: Covered by above policy.
ACTION: See the Volunteer Orientation Section in the Resource Manual.
The Manager of Volunteer Resources should be continually alert for additional training needs of
volunteers.
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POLICY
PRINCIPLE IV:
VOLUNTEERS WHO ARE DIRECTLY INVOLVED IN
PATIENT/FAMILY HOSPICE PALLIATIVE CARE COMPLETES A
COMPREHENSIVE AND STANDARDIZED TRAINING PROGRAM.
Policy implication: This statement can be seen as a framework policy statement, which
underlines the involvement of volunteers in hospice palliative care.
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PRACTICE
Training
IV Training and Orientation
ƒ Resource Sheets
- 17. Training and Orientation
- 18. Seven Principles for Training Adults
-
19. Training Techniques
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OVERVIEW SHEET IV
Training
Training and Orientation
The Manager of Volunteer Resources has a responsibility to ensure that every volunteer working
under his/her supervision is properly prepared for the task for which they have volunteered. In a
society like Canada, where death is not readily discussed and is for the most part hidden away we
cannot assume that everyone will come readily prepared to provide support to the dying and their
families.
One of the very important roles of the Manager of Volunteer Resources in hospice palliative care
is that of coordinator of training. This does not mean that the manager must undertake to train
volunteers, although for some parts of the curriculum he/she may be best placed to do so. The
manager must, however, be able to pull together necessary resource people and facilitators,
arrange suitable facilities and times, and maintain records of who attended what sessions. Most
importantly, they must be able to give direction to trainers and resource people as to expectations
and program-specific considerations, and ensure evaluation and feedback to these people.
What is orientation?
Often orientation of volunteers is confused with training, but they are different. The Manager of
Volunteer Resources is generally responsible for the orientation of volunteers. In many cases,
part of the orientation may be done informally as part of the application and interview process
and then backed up by a more formal group meeting followed by some more one-on-one
orientation. Every volunteer needs an orientation. It provides important and necessary
information but it is not necessarily integral to job performance. (See Resource Sheet 17.)
What is training?
Training is a process that is integral to the performance of the job the volunteer has decided to
take on. Not every volunteer will have the same training needs. A social worker volunteering for
palliative care, for instance, will have less to learn from the training than someone who has never
been in the human services field. Everyone who requires volunteers to undergo mandatory
training must appreciate this and give some consideration to prior learning that volunteers may
have. Also in structuring training, the involvement of the trainees in many group discussions and
small group exercises will allow people with more skills and knowledge to share them and
become part of the training process.
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Adults vs. children as learners:
Anyone who is involved in training of adult volunteers will need some grounding in how adults
learn as opposed to children. If the Manager of Volunteer Resources is arranging for other staff
or for outside facilitators, it is wise to ascertain what their approach to presenting will be and
provide some helpful direction. (See the Resource Sheet for facilitators in the Standardized
Curriculum part of the Resource Kit. See also Resource Sheets 18 & 19.)
Training as risk management and screening:
Ensuring volunteers are properly orientated and trained is a very powerful tool in reducing risk to
volunteers, to clients and families and to the program itself. If training is seen as a pre-requisite
to acceptance as a volunteer in the program, it can serve as an excellent screening tool. The
Manager of Volunteer Resources will be able to observe the prospective volunteers and assess
their suitability for service with the dying. Training can also serve as a heads-up to the manager
on areas to focus on in supervision.
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RESOURCE SHEET 18
Training and Orientation
Orientation
Provides information that is important, but not
necessarily integral to the job.
Training
Is integral to the success of the job.
It is necessary
Although it is not integral to the job, everyone
needs it.
Not always necessary
The person coming to the job may already
have the necessary skills and knowledge.
Orientation includes
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Organization mission, philosophy values.
Overview of agency activities.
Overview of agency policies and procedures.
Layout of agency.
What to do in an emergency
Introductions to fellow staff.
Etc.
Training includes
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Knowledge needed to perform job.
Skills needed to perform job.
Modify attitudes.
Help to adapt to change.
Increase self-confidence.
How to do a job.
Suggest new ideas.
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RESOURCE SHEET 19
Seven principals for training adults
1. The learner understands the goals of the program, the teacher determines what the learner
wants and the learner accepts part of the responsibility for planning.
2. The learning environment is characterized by physical comfort, mutual trust and respect,
mutual helpfulness, freedom of expression and acceptance of differences.
3. Learning must be problem-centered and experience related.
4. Learning is more rapid and efficient when the learner is a participant rather than simply a
spectator.
5. When a visible and tangible product appears as a result of a learner’s activity, interest is
greater and the learning will be deeper.
6. Group learning is more effective than individual learning.
7. Learning must be used to be retained.
These seven principles are compiled from various sources (Malcolm Knowles, Jack Gibb, Kurt
Lewin, and Harry Miller) who are leading theoreticians in the field of adult learning.
Translating these into systems for making adult learning happen basically means:
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Learner-centered vs. teacher-centered programs.
Design of participatory structures vs. hierarchical structure in the organization of learning.
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RESOURCE SHEET 20
Training Techniques
What is the purpose?
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Knowledge/understanding
Skills development
Alter attitudes/values
Increase interest
Lecture:
Advantages
Disadvantages
Gives information quickly in a concise
organized fashion.
Limit to what is understood and retained.
Reading/Discussion:
Advantages
Disadvantages
Gives information in more detail.
There is active participation.
Shows how much person has reflected on
and understands material.
Time consuming.
Requires a literate audience.
Participants require degree of selfconfidence.
Field Trip:
Advantage
Disadvantages
Show things in action.
Tends to be remembered.
Time and expense.
Lack of organization of what is to be
learned.
Panel Discussion:
Advantage
Disadvantages
Provides information on topic from a
variety of perspectives.
Provides opportunity for questioning.
Variety of styles and approaches.
Not always a coherent whole.
Depends on listening skills
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Case Studies:
Advantage
Disadvantages
Group involvement reinforces adult learning.
Sometimes is an exchange of ignorance if
knowledge base not there.
Can be dominated by strong individuals.
Relates to real life.
Encourages problem solving.
Opens different perspectives on the topic.
Draws out knowledge and abilities of
participants.
Role Playing:
Advantage
Disadvantages
Allows participants to practice skills and act out
desired behaviours.
Allows evaluation of strengths and weaknesses.
Some people are very uncomfortable
with exercise.
Coaching:
Advantage
Disadvantage
Allows demonstration.
Allows practice to see if skill is learned.
Allows for feedback.
Can be repeated until the skill is really
learned.
May require considerable time.
Counseling:
Advantage
Disadvantages
Helps people to discover how they might
improve.
Uses questions to assist individuals to think
about themselves and what their strengths and
weaknesses are.
Identifies problems.
Identifies cause.
Identifies alternatives.
Identifies better course of action.
Learn from their experience.
Time consuming.
Requires considerable skill.
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PRINCIPLE V
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PRINCIPLE V:
THE VOLUNTEER PROGRAM OPERATES IN A FRAMEWORK OF
QUALITY ASSURANCE AND QUALITY IMPROVEMENT.
STANDARD 14: The hospice palliative care volunteer program abides by the principles of
“Ten Steps” of screening as outlined by the National Education Campaign on Screening of
Volunteer Canada. These are:
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Before you select:
1. Determine the risk
2. Position design and description
3. Recruitment process
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The selection process:
1.
2.
3.
4.
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Formatted: Bullets and
Numbering
Application Form
Interviews
Reference checks
Police Record checks
Managing the volunteer:
1. Orientation and training
2. Supervision/evaluation
3. Client follow-up
STANDARD 15: All aspects of the hospice palliative care volunteer program are assessed
for potential risk to clients and families, the volunteers and the organization. Every effort is made
to reduce, control or transfer risk. The organization accepts that risk can never be eliminated.
STANDARD 16: The hospice palliative care volunteer program is evaluated to assure
suitable outcomes and impacts and to this end, indicators of success are established and records
maintained based on these indicators. The evaluation should be consistent with national
standards.
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STANDARD 17: Volunteers will be evaluated on a regular basis to allow for:
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Recognition of their contribution
Resolution of any difficulties/problems
Communication of new directions of the hospice palliative care program
Change of assignment as mutually fits the volunteer, client(s), and agency
A formal performance record
STANDARD 18: Volunteers will receive ongoing support and recognition by:
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Having access to the Manager of Volunteer Resources who will work with volunteers on
questions and concerns
Receiving regular information about the hospice palliative care program
Having access to educational opportunities
Meeting with other volunteers
Receiving recognition of their efforts, both collectively and individually
Be allowed to make appropriate input into the hospice palliative care program
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POLICY
PRINCIPLE V:
THE VOLUNTEER PROGRAM OPERATES IN A FRAMEWORK OF
QUALITY ASSURANCE AND QUALITY IMPROVEMENT.
Policy implication: This principle is in effect a framework policy for the hospice palliative
care volunteer program.
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PRINCIPLE V:
THE VOLUNTEER PROGRAM OPERATES IN A FRAMEWORK OF
QUALITY ASSURANCE AND QUALITY IMPROVEMENT.
STANDARD 14:
The hospice palliative care volunteer program abides by the principles of "Ten Steps" of
screening as outlined by the National Education Campaign on Screening of Volunteer Canada.
These are:
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Before you select
1. Determine the risk
2. Position design and description
3. Recruitment process
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The selection process
8. Application form
9. Interviews
10. Reference checks
11. Police record checks
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Managing the volunteer
8. Orientation and training
9. Supervision/evaluation
10. Client follow-up
Sample Policy Statement: The insert name of program undertakes comprehensive screening of all
volunteers, regardless of who they are.
ACTION: See Overview Sheets (IIIA, IVA, IIIB, VA) on Intake Screening, Training and
Orientation and Supervision, Screening/ Risk Management.
STANDARD 15: All aspects of the hospice palliative care volunteer program are assessed
for potential risk to clients and families, the volunteers and the organization. Every effort is made
to reduce, control or transfer risk. The organization accepts that risk can never be eliminated.
Sample policy statement:
Standard 15 can serve as a policy statement on risk
management.
ACTION: See Overview Sheet V Screening/Risk Management.
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STANDARD 16: The hospice palliative care volunteer program is evaluated to assure
suitable outcomes and impacts and to this end, indicators of success are established and records
maintained based on these indicators. The evaluation should be consistent with national
standards.
Sample policy statement: Standard 16 can serve as a policy statement around evaluation.
ACTION: See Overview Sheets VC and VD on Evaluation and on Record Keeping.
STANDARD 17: Volunteers will be evaluated on a regular basis to allow for:
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Recognition of their contribution
Resolution of any difficulties/problems
Communication of new directions of the hospice palliative care program
Change of assignment as mutually fits the volunteer, client(s), and agency
A formal performance record
Sample policy statement: The palliative care volunteer program of
insert name of program
ensures that all volunteers are formally evaluated after their probationary period and a minimum
of once per year after that.
ACTION: See Overview Sheet on Evaluation and on Record Keeping.
STANDARD 18: Volunteers will receive ongoing support and recognition by:
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Having access to the Manager of Volunteer Resources who will work with volunteers on
questions and concerns
Receiving regular information about the hospice palliative care program
Having access to educational opportunities
Meeting with other volunteers
Receiving recognition of their efforts, both collectively and individually
Be allowed to make appropriate input into the hospice palliative care program
Sample policy statement: The hospice palliative care program of insert name of program provides
a broad system of recognition based on the belief that adequate support for their valuable
contribution, is the best form of recognition for the volunteer.
ACTION: See Overview Sheet VD on Recognition.
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PRACTICE
Handling Risk/Quality Control/Recognition
VA Screening/Risk Management
VB Evaluation
ƒ Resource Sheets
21. Outcome Table
22. Outcome Evaluation Process
23. Indicators
24. Data Collection
25. Evaluating Individuals
26. Effective Evaluation of Volunteers Efforts
Formatted: Bullets and
Numbering
VC Record Keeping
ƒ Resource Sheets
27. Volunteer Information Form
28. Palliative Care Volunteer Log
29. Volunteer Time Sheet
30. Exit Questionnaire
31. Confidential Information
Formatted: Bullets and
Numbering
VD Recognition
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OVERVIEW SHEET VA
Handling Risk/Quality Control/Recognition
Screening/Risk Management
The Manager of Volunteer Resources should understand that comprehensive screening is
essentially the implementation of sound volunteer management practices. If programs are
properly planned, if a sound policy framework exists for the program, if positions are assessed
for risk and designed with risk management in mind, if volunteers are properly trained,
supervised and evaluated, then screening is being taken care of.
What are the primary screening concerns in palliative care?
Often when we think of screening we are concerned to protect our clients against potential
physical or sexual abuse. In the area of hospice palliative care our main concerns around
screening will most likely be to protect our clients from volunteers and staff who may harm them
emotionally or exploit them financially. We must also guard against those who would
proselytize.
What about general risk management?
Screening is essentially a major component of risk management in your program. Not only is it a
protection for your clients and their families against harm that might be caused by an
inappropriately placed volunteer, but if done right it is a protection for the volunteer and the
organization itself. Client, volunteer and agency are the three liability exposures which must
concern you.
As a Manager of Volunteer Resources you are responsible for ensuring that risk management
goes beyond the human resource issue to areas where there may be physical risk to the volunteer
or to the client because of the volunteers involvement. The design of the job and the position
description, the training you provide and the supervision will be crucial. Remember that the key
elements in risk management are:
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Identifying risks or what might go wrong
Evaluating risks in terms of the highest probability
Controlling risk by:
- Eliminating the risk by stopping the activity
- Reducing the risk by changing and modifying the activity to minimize potential harm
- Transferring the liability by contracting out/insurance, etc.
The Manager of Volunteer Resources should be aware of any agreements that transfer liability,
and should advocate for proper insurance coverage for the volunteer component of the program.
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Review of screening:
Elements of the screening process have been integrated throughout the previous overview sheets.
As a review the “Ten Steps” are:
Before you start:
1. Determine the risk - look carefully at your program and try to identify all potential risks.
2. Position design & description - develop all volunteer positions with a view to eliminating,
reducing or transferring risk and write position descriptions accordingly.
3. Recruitment process - make clear that screening is a priority in your recruitment strategy.
The selection process:
4.
5.
6.
7.
Application form - design them with screening issues in mind.
Interviews - ensure they are done, and done well.
Reference checks - undertake, as they are one of the most important tools for screening.
Police record checks - important particularly with high-risk positions.
Managing the volunteer:
8. Orientation and training - extremely important for reducing risk around job performance
and for assessing the volunteer for suitability.
9. Supervision/evaluation - Supporting, monitoring and giving feedback is crucially
important for client and volunteer satisfaction and safety.
10. Client follow-up - the only way to know for sure that the client is being served
appropriately.
REMEMBER THAT THE ONLY WAY TO TRULY ELIMINATE RISK IS TO CLOSE THE
PROGRAM COMPLETELY!!!
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OVERVIEW SHEET VB
Handling Risk/Quality Control/Recognition
Evaluation
The Manager of Volunteer Resources in hospice palliative care has a responsibility to ensure that
the volunteer program is evaluated for quality and that information gained as a result of that
evaluation is used to help improve the program. In order that such an evaluation can be
undertaken, desired outcomes for the program should be established at the time of program
development and/or restructuring. The decision will also need to be made as to which indicators
of success will be used to determine if outcomes are being met.
It is also true that in a hospice palliative care setting the manager will have to ensure that his/her
approach to evaluation is consistent with that required by the organization and in many cases
with national health accreditation standards.
The Manager of Volunteer Resources also has the responsibility of performance evaluations for
the volunteers.
Reasons for program evaluation:
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To demonstrate to community, board, senior management, etc. that the program is
worthwhile.
To determine if the program is on track.
To justify the present cost and/or more resources.
To measure the extent that the needs of the client have been met through the program.
To determine the real cost/benefit of the program.
To gain support for the programs continuance or expansion.
To improve the program.
To demonstrate the importance of volunteers.
To revise or change goals or outcomes.
To ensure that you are doing what you say you are doing.
What process can we use?
An outcomes evaluation process asks several questions:
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Who are our clients? In the case of a hospice palliative care volunteer program these would
be the dying person and their family, the hospice palliative care team, the volunteer, the
organization and the community served.
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What is our mission?
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What are our inputs? What resources are dedicated to the program? Both financial and
human?
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What are our activities? What do the people involved in the hospice palliative care
volunteer program do as a result of the inputs?
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What are our outcomes? What is different because of what we do as a program? Look at
both the positive and the negative.
(See resource sheets for more information on program evaluation.)
Why should we evaluate volunteers?
It is important to give feedback on a regular basis to volunteers and to provide opportunities for
them to give feedback to you. Such feedback can be given on an informal day-to-day basis but it
is also helpful to set aside the time for more formal evaluation. The volunteer should understand
from the beginning of their involvement that evaluations will be undertaken and why. Thus:
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The volunteer’s issues are heard
The program’s issues are heard
Problems can be identified and corrective action put in place
Praise can be given for specific achievements
A permanent record of performance is established
The importance of the volunteers work is acknowledged
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RESOURCE SHEET 21
Outcomes Table
Outcome
Outcome
Indicators
Method of Data
Collection
Sources of Data
Target
Source – Dr. T.W. Kim, Presentation 17th IAVE World Conference, Korea.
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RESOURCE SHEET 22
Outcome Evaluation Process
Outcomes
The positive and/or negative changes that have occurred in conditions, people, policies as a
result of your organization’s or program’s inputs and activities.
“What is different? To what extent were our goals accomplished?”
Outcomes can include values, attitudes, knowledge, skills, and behaviours.
Activities
Describe what the organization does with its inputs; what people do, their work or service
activities.
Inputs
The resources dedicated to or consumed by your organization in producing the outcome.
Inputs include such things as money, time committed by volunteers/staff, space and
materials.
What is our mission?
The overall purpose of an organization answers the question, “How will the world be
different as a result of our activities?” It describes the results your organization wants to
achieve.
Who are our customers/clients?
Those people who are affected by your agency or program including individuals, groups,
organizations and communities that receive your products, services or resources.
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RESOURCE SHEET 23
Indicators
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Is an observation or measurement?
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Ideally, it includes a realistic target or performance standard by which success is measured
(i.e. the number expected to participate, the percentage of client’s who are satisfied).
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Each outcome should be measured by at least one indicator.
Examples:
The level of group participation (observable, concrete) may be an indicator of self-esteem
(abstract).
A 50% increase in the number of people requesting information packages may be an indicator of
the success of a recruitment poster.
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Numbering
104
RESOURCE SHEET 24
Data Collection
To save time, energy and resources
Incorporate data collection into existing activities.
Obtain feedback and statistics through:
Entries in log books or sign-in sheets.
Surveys or testimonials at volunteer training sessions.
Question(s) asked of clients when they are called to schedule an
appointment or arrange a service.
An inquiry on the volunteer application form.
Evaluation interviews.
Information request in newsletter or mail out.
Observation by volunteers, staff and clients.
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RESOURCE SHEET 25
Evaluating Individuals
When placing volunteers:
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Give clear job descriptions with goals, objectives, plans, timeliness and definitions of
“success”.
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Tell person how the job will be evaluated.
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Give them duplicate, blank evaluation forms that can be filled out by both them and
supervisor so that they can be compared at evaluation time.
At check points
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Review goals and timelines and progress against them.
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Note suggested action against each goal assessed.
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Note assistance that could/would have helped towards greater success.
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Note narrative evaluation of work results.
Source adapted from Susan Vinyard
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RESOURCE SHEET 26
Effective Evaluation of Volunteer Efforts
Basic Principles:
1. The volunteer and agency must have a clear understanding of the work to be done.
2. The evaluation must be fair.
3. It must be focused on the work, not the individual.
4. It should be given cooperatively; two-way feedback.
5. The volunteer should have had the tools, information and support needed to be successful at
the assigned work.
6. When mistakes are made or problems arise, they are corrected immediately.
Source adapted from Susan Vinyard.
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OVERVIEW SHEET VC
Handling Risk/Quality Control/Recognition
Record keeping
The Manager of Volunteer Resources has a responsibility to maintain records on the hospice
palliative care volunteer program. In some cases the records kept will be dictated by the demands
of the parent organization or the overall hospice palliative care program. In other cases the
manager may choose to also keep records that best serve their own purposes in assessing the
impact of the program and the individual volunteers.
Setting up systems for record keeping that are easy to use is the key for consistency and
regularity around the process. Volunteers themselves can be involved in this process through the
use of several different tools for self-reporting. Remember, however, that in involving them they
must feel the actual need for the activity (e.g. written reports) and that the records they provide
will be used.
Why keep records?
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To provide material for formal evaluations of programs and individual volunteers
As a risk management tool
To assess for possible new directions in programming
As a planning tool
For budgeting purposes
To provide statistics to funders
What records should be kept?
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Number of volunteers
Number of clients served by the volunteer
Number of volunteer hours
Activities of volunteers
Demographic information on volunteers
Dollar value of volunteer hours
Evidence of qualitative impact of volunteers on program
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What could be in the volunteer file?
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Personnel information
Application
Interview form
Contract with volunteer
Volunteer job description if personalized
Training and orientation record
Time sheet
Copies of written reports/log
Performance appraisals
Exit questionnaire
Each program will have slightly different requirements for the volunteer file and what will be
included, but many of the above would seem to be fairly standard for a hospice palliative care
volunteer program. Some samples of the above have been provided elsewhere in the resource kit.
Samples of the following are included:
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Formatted: Bullets and
Numbering
Log
Time sheet
Exit questionnaire
What about confidentiality and storage?
Many managers of volunteers in hospice palliative care will be working in organizations where
there are well-established policies on record storage and confidentiality. The records which are
kept on the volunteer should be kept in secure storage, confidentiality around the information
should be maintained and timelines should be in place for how long files are kept when they are
no longer active. The simplest thing is to adapt the organizations policies around personnel
records for the volunteer program.
What about technology?
Several electronic tools have been developed for the management of volunteer information. As
with most technology these systems are continually being updated and new tools are being
developed. You will need to review what is available and make decisions as to whether these
management systems will help in your program.
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RESOURCE SHEET 27
Volunteer Information Form
Name
Interviewed
Reference Check
Name
Date
Results
Police Record Check
Requested _______________________
Received ________________________
Training/Orientation
Session
Date
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Evaluations
1st
2nd
3rd
Other
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RESOURCE SHEET 28
Palliative Care Volunteer Log
Month
Year
Date
Name of Volunteer
Hours Worked
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RESOURCE SHEET 29
Volunteer Time Sheet
Volunteer _________________________________________ Month _______________
Day
Assignment
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RESOURCE SHEET 30
Exit Questionnaire
We are always trying to improve our volunteer involvement programs. We would appreciate
your help in identifying areas in which we might do better. Please be as honest as you can – all
information will be kept confidential, but it will be used to make sure that others who volunteer
will receive the best possible treatment.
1. How long did you volunteer with us? ______________________________________
2. What type of volunteer work did you do? ___________________________________
3. Why are you leaving? (Please check all that apply.)
†
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Job completed
Moving away
Need a change
Didn’t like job I was given
Didn’t feel welcome
Didn’t feel well utilized
Other time commitments
Other _______________________________________________________________
4. What did you like best about volunteering with us? ____________________________
________________________________________________________________________
5. What suggestions would you make to improve our volunteer program? ____________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
7. Overall, how would you rate your experience in volunteering with us?
Great
5
4
Average
3
2
Terrible
1
Thank you for completing this form. We appreciate your help in volunteering for us and for
assisting our clients and the community.
Source – Making the Most of Volunteer Resources, Community Services Council Volunteer
Centre 1992.
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RESOURCE SHEET 31
Confidential Information
Breaches of privacy and/or loss of records commonly result from carelessness; such as files left
out on a desk or loud conversations. Physical security, such as locked filing cabinets and
computer passwords, protects against prying. As you decide your procedures, consider the
following:
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Are your computer systems backed up each day?
Where do you store the back-ups?
Even if they are in a fireproof container, heat can ruin discs.
Also remember, that while limiting access to records is generally a good idea, it must be
reconciled with the rights individuals may have to see information about themselves.
Clear rules provide essential guidelines. Below is a suggested policy for you to adapt for your
own use.
Policy: Maintenance and Storage of Records
A system of records will be maintained on each volunteer, including dates of service, positions
held, duties performed, evaluation of work, awards received and other pertinent information.
Volunteer records shall be accorded the same confidentiality as staff personal records and
assigned appropriate safe storage.
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OVERVIEW SHEET VD
Handling Risk/Quality Control/Recognition
Recognition
Managers of Volunteers must ensure that volunteers receive the recognition which they so richly
deserve. It should be understood, however, that one size does not fit all when it comes to
recognition and that it is not recognition alone that keeps volunteers involved or motivated to
continue what they do.
Many volunteers shun the limelight and will be embarrassed by more public displays of
recognition. Others will welcome the public acknowledgment of their contribution and would
miss this if it were absent. Knowing the volunteer and what they require in terms of recognition
is one of the roles of the Manager of Volunteer Resources.
It is also important in providing recognition to volunteers and to also pay tribute to paid staff.
This is only fair, as many of them go beyond the call of duty in their efforts and they are crucial
in supporting the volunteers in their work. Doing so will also serve to prevent problems between
them.
Why do we recognize volunteers?
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To convey appreciation
To instil a sense of belonging
To show that the volunteer is valued
To encourage continued commitment
How can we recognize volunteers?
Informally:
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Volunteer bulletin board
Expense reimbursement
Acknowledgment by name
Allowing them flexibility in schedule
Ensuring appropriate matching
Meaningful work
Passing on comments from clients and staff
A simple thank you on a regular basis, etc.
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Formally:
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Make it public/beyond the manager
Providing visibility in the community
Special recognition events
Letters of reference
Awards (e.g. service pins) - nomination for community, provincial, national awards
Access to training, etc.
When should volunteers be recognized?
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When the volunteer comes into the program through an appropriate welcome
Regularly through smiles, interest in their issues, etc.
Monthly in newsletters
Special occasions
Annually at special events
Upon completion of special assignments
When a client they have been involved with dies
During National Volunteer Week or on Dec 5th, the International Day of Volunteers.
REMEMBER THAT RECOGNITION IS NOT A ONE-TIME EVENT, IT IS
ONGOING. IT COMES FROM THE HEART AND IS PART OF THE
CARE WE SHOW THE VOLUNTEER.
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PRINCIPLES AND STANDARDS
FOR
VOLUNTEERS IN HOSPICE PALLIATIVE CARE
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PRINCIPLE I:
Volunteer services are an essential component of the hospice palliative care
programs in Nova Scotia.
STANDARD 1: The hospice palliative care volunteer program is reflected clearly in the
organization’s budget.
STANDARD 2: The hospice palliative care volunteer program is positioned appropriately in
the organizational chart.
STANDARD 3: The hospice palliative care volunteer program is adequately supported with
paid staff and a specifically designated Manager of Volunteer Resources.
STANDARD 4: The hospice palliative care volunteer program is carefully planned and
developed within the context of the organization’s own plan and to externally recognized
standards of management of volunteer.
PRINCIPLE II:
Volunteer services are an essential component of the hospice palliative care
interdisciplinary team, providing unique resources for patient, family and
team members, and representing one form of the communities response to the
program.
STANDARD 5: The hospice palliative care team has a fully integrated volunteer component
that is understood and supported by other team members.
STANDARD 6: The hospice palliative care volunteer program is structured to harmonize and
comply with human resource structures and collective bargaining agreements within the
organization.
STANDARD 7: The Manager of Volunteer Resources for hospice palliative care will recruit
volunteers representative of community diversity.
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PRINCIPLE III:
The hospice palliative care organization provides resources for volunteer
support.
STANDARD 8: A realistic budget is provided for the hospice palliative care volunteer
program. (See Standard 1 and Making the Case for a Manager of Volunteer Resources.)
Resources are available so that prospective hospice palliative care
volunteers are assessed as to his/her desire, ability and suitability to fit productively within the
program.
STANDARD 9:
STANDARD 10: The screening process will provide the prospective volunteer with clear
information about the philosophy, goals of the particular hospice palliative care service and the
role and expectations of the volunteer.
STANDARD 11: Volunteers in hospice palliative care will be supported through supervision
by:
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Assigning them appropriately within the program.
Providing them with ongoing supervision as they serve as part of the palliative care team.
Empowering them to act, within the limits of their role, to achieve the desired support for
patients and families.
Regular checking of the volunteer’s progress by the Manager of Volunteer Resources
Services.
Allowing the volunteer to give and receive regular feedback about their role and
performance.
PRINCIPLE IV:
Volunteers who are directly involved in patient/family care complete a
comprehensive and standardized training program.
STANDARD 12: The palliative volunteer program standardized curriculum involves the
volunteers in a minimum of twenty (20) to twenty-five (25) hours of training in the following
core components:
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Introduction to Palliative Care
Communication Skills
Psycho/Social Elements of Dying/Stages of Dying
Spiritual Issues
Caring for Yourself
Pain and Symptom Management
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- The Dying Person’s Experience of Pain
- Management of Symptoms
The Process of Dying
Grief and Bereavement
Family Centered Care
STANDARD 13: The individual hospice palliative care program will ensure additional
program specific orientation and training as deemed appropriate.
PRINCIPLE V:
The volunteer program operates in a framework of quality assurance and
quality improvement.
STANDARD 14: The hospice palliative care volunteer program abides by the principles of
"Ten Steps" of screening as outlined by the National Education Campaign on Screening of
Volunteer Canada. These are:
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Before you select
1. Determine the risk
2. Position design and description
3. Recruitment process
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The selection process
8. Application form
9. Interviews
10. Reference checks
11. Police record checks
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Managing the volunteer
8. Orientation and training
9. Supervision/evaluation
10. Client follow-up
STANDARD 15: All aspects of the hospice palliative care volunteer program are assessed for
potential risks to clients and families, the volunteers and the organization. Every effort is made to
reduce, control or transfer risk. The organization accepts that risk can never be eliminated.
STANDARD 16: The hospice palliative care volunteer program is evaluated to assure
suitable outcomes and impacts and to this end indicators of success are established and records
maintained based on these indicators. The evaluation should be consistent with national
standards.
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STANDARD 17: Volunteers will be evaluated on a regular basis to allow for:
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Recognition of their contribution
Resolution of any difficulties/problems
Communication of new directions of the hospice palliative care program
Change of assignment as mutually fits the volunteer, client(s), and agency
A formal performance record
STANDARD 18: Volunteers will receive ongoing support and recognition by:
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Having access to the Manager of Volunteer Resources who will work with volunteers on
questions and concerns
Receiving regular information about the hospice palliative care program
Having access to educational opportunities
Meeting with other volunteers
Receiving recognition of their efforts, both collectively and individually
Being allowed to make appropriate input into the hospice palliative care program
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SAMPLE POLICIES
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SAMPLE POLICIES
This section of the resource kit is a compilation of the policies and sample policy statements,
which have been integrated throughout the Principle, Standards, and Practice Section of the
resource kit. This compilation is meant as an easy reference to users of the manual as you review
policy areas which you may wish to develop within your own organization in support of the
hospice palliative care program.
In order to simplify this section, the policies have been organized under the headings of
framework policies and operational policies. In some cases the statement is a framework policy
that expresses values but also has an operational implication. In those cases they are included in
both sections. You will note that the framework policies are a repetition of the principles and
some of the standards. Principles and standards are essentially another term for policy as they set
a framework for a program and the values, which underpin the program’s operation.
The headings of principle and standard have been removed and the policies are listed as they
appear in the document but under their appropriate heading.
***Users of this section must be very clear that this listing is meant as a reference only. Policy
development is very important work in organizations and must meet the individual needs of
particular programs
FRAMEWORK POLICIES:
Volunteer Services are an essential component of the hospice palliative care programs in
Nova Scotia.
Volunteer services are an essential component of the hospice palliative care
interdisciplinary team, providing unique resources for patient, family and team members,
and representing one form of community response to the program.
The hospice palliative care team has a fully integrated volunteer component that is
understood and supported by other team members.
The insert program name is committed to the full involvement of volunteers from the community
as members of the hospice palliative care team. Team members receive the information and
support needed to ensure their full understanding and acceptance of community volunteers
as partners in their work.
The Manager of Volunteer Resources for hospice palliative care recruits volunteers who
are representative of community diversity.
The hospice palliative care organization provides resources for volunteer support
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Volunteers who are directly involved in patient/family hospice palliative care complete a
comprehensive and standardized training program.
The volunteer program operates in a framework of quality assurance and quality
improvement.
OPERATIONAL POLICIES:
The insert program name shows its commitment to the hospice palliative care volunteer program
by budgeting appropriate financial resources.
The hospice palliative care volunteer program is adequately supported with paid staff and
a specifically designated Manager of Volunteer Resources.
The insert program name underlines its commitment to excellence and clients and program
standards by ensuring that a designated Manager of Volunteer Resources is part of the
hospice palliative care team.
In line with its commitment to providing quality hospice palliative care service, the insert
program name ensures that the volunteer component is properly planned.
The hospice palliative care team has a fully integrated volunteer component that is
understood and supported by other team members.
The insert program name is committed to the full involvement of volunteers from the community
as members of the hospice palliative care team. Team members receive the information and
support needed to ensure their full understanding and acceptance of community volunteers
as partners in their work.
The hospice palliative care volunteer program is structured to harmonize and comply with
paid human resource structures and collective bargaining agreements within the
organization.
The Manager of Volunteer Resources for hospice palliative care recruits volunteers who
are representative of community diversity.
All prospective volunteers will be assessed, to the standards established by the National
Education Campaign on Screening of Volunteer Canada, to ensure their suitability for the
hospice palliative care setting, service to clients and their families and in order to control
risk and ensure the best quality of service by the organization.
The prospective volunteer will be provided with sufficient information at the intake stage
so that he/she can make an informed decision as to whether they will proceed with the
application.
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The hospice palliative care program of insert program name ensures that volunteers receive the
support they need from assigned staff, that their regular activities are monitored and that
appropriate feedback is given. This is perceived as an important component of risk
management as well as a basic right of volunteers.
The hospice palliative volunteer program standardized curriculum involves the volunteers in a
minimum of twenty four (24) to twenty five (25) hours of training in the following core
components:
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Introduction to Hospice Palliative Care
Communication Skills
Psycho/Social Elements of Dying
Spiritual Issues
Pain and Symptom Management
The Process of Dying
Grief and Bereavement
Family Centered Care
Caring for Yourself
The individual hospice palliative care program will ensure additional program-specific
orientation and training as deemed appropriate.
The hospice palliative care volunteer program abides by the principles of "Ten Steps" of
screening as outlined by the National Education Campaign on Screening of Volunteer
Canada. These are:
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Before you select
1. Determine the risk
2. Position design and description
3. Recruitment process
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The selection process
8. Application form
9. Interviews
10. Reference checks
11. Police record checks
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Managing the volunteer
8. Orientation and training
9. Supervision/evaluation
10. Client follow-up
All aspects of the hospice palliative care volunteer program are assessed for potential risk
to clients and families, the volunteers and the organization. Every effort is made to reduce,
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control or transfer risk. The organization accepts that risk can never be eliminated. The
hospice palliative care volunteer program is evaluated to assure suitable outcomes and
impacts and to this end, indicators of success are established and records maintained based
on these indicators. The evaluation should be consistent with national standards.
The hospice palliative care volunteer program of insert program name ensures that all volunteers
are formally evaluated after their probationary period and a minimum of once per year
after that.
The hospice palliative care program of insert program name provides a broad system of recognition
based on the belief that adequate support, for their valuable contribution, is the best form of
recognition for the volunteer.
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VOLUNTEER RESOURCE
MANAGEMENT DEFINITIONS
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VOLUNTEER MANAGEMENT
DEFINITIONS
Advocating:
To write or speak in favour or support of. It is the role of the
Manager of Volunteer Resources to do this for the volunteers, and
the volunteer component, within his/her organization.
Client:
The immediate recipient of the services of the hospice palliative
care team. (In other words the terminally ill person.) There are
many terms, which could be applied here, including patient,
resident, and customer. For the purpose of this resource kit, the
term client is used.
Evaluation:
To examine carefully to determine the value and success of a
program or a person as a service provider within a program in
relation to a set of previously determined criteria.
Indicator:
An observation or measurement which ideally includes a realistic
target or performance standard by which success is measured (i.e.
the number expected to participate, the percentage of client’s who
are satisfied.)
Manager of Volunteer
Resources:
The person in an organization or program who has primary
responsibility for the involvement and support of volunteers. In
many cases this person is paid and is a designated only to work
with the volunteer program. In other cases this person has the
responsibility for working with volunteers as part of another job. In
some cases this person is a volunteer themselves. There are other
titles for this position including Administrator of Volunteers;
Coordinator of Volunteers or Volunteer Services; Director of
Volunteers; etc.
Orientation:
The process for introducing someone to an organization or
program in order that they understand their relationship to it and
others involved, their role and the parameters within which they
must work.
Outcome:
The positive or negative changes that have occurred in conditions,
people and policies as a result of an organization’s or program’s
inputs and activities. It tells us what is different and to what extent
goals were accomplished. Outcomes can include values, attitudes,
knowledge, skills and behaviors.
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Police record checks:
A part of the screening process which involves the police checking
the records they hold to see if the person whose name and birth
date/ and or fingerprint they are given has a criminal record. This
is only one of the Ten Steps of Screening.
Policy:
A principle, plan or course of action. In the sense of principle it
implies that some kind of position is taken, a value or belief is
stated. In the sense of plan or course of action, that specific steps,
procedures and methods are defined.
Position description:
An outline of the purpose, duties, responsibilities, requirements,
parameters and benefits of a job to be done as part of a program.
Principle:
A fundamental truth or law upon which others are based. In some
cases they are a statement of moral standard.
Recognition:
An acknowledgment of activity or involvement, which is formal in
nature, and/or a showing of appreciation for services rendered.
Risk management:
It is the responsible and contemporary best practice that places due
and appropriate priority on personal safety, program effectiveness,
and organizational well-being. It involves identifying risks,
evaluating risks and controlling risks. Controlling risk is
undertaken by either stopping the activity, eliminating the risk in
the activity, minimizing the risk or by transferring liability.
Screening:
Is a process of risk management used by organizations in the area
of human resources. These human resources include both paid and
unpaid staff such as volunteers. This process begins before the
person enters the organization and is not complete until they leave.
Standard:
The degree of excellence which is required for a particular
purpose. It is the benchmark against which actions and activities
can be measured.
Volunteer:
An individual, who by their own choice, provides service of
benefit to another person (outside their immediate family) or to the
community without expectation of financial gain. The volunteer
may undertake this activity within the structure of an organization
or informally on their own.
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ORIENTATION
OF
VOLUNTEERS
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FACILITATOR’S OVERVIEW
Orientation Session for Volunteers
General Description of Session: The general purpose of this session is to provide the volunteer
with an orientation to your specific program, the policies and procedures which provide the
framework within which they will function, and a clear understanding of their role. It will also
examine in more depth the issue of confidentiality.
Learning Objectives: At the end of the session the volunteer will:
ƒ
Understand the vision, values, mission of the hospice palliative care program of
insert name of program;
ƒ
ƒ
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Have reviewed the general and specific roles of the hospice palliative care volunteer and
will understand where they fit in;
Have discussed program policies and procedures as they apply to volunteers in the
program;
Have thought through some of the issues around the issue of confidentiality.
Recommended Time Frame: This session is designed to be delivered in a 2½ hour time frame.
This may vary depending on whether tours of the facility are included and how long
introductions of team members and their role take.
Process: The session is a combination on lecture, review of written material, group exercise and
case studies. Learning for the session should also be reinforced by providing the volunteer with
the volunteer manual, if there is one, and/or written material on the organization, copies of
policies and job descriptions etc.
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SESSION OUTLINE AT A GLANCE
Orientation
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
1. Welcome
2. Warm-up Exercise
3. Workshop Goals
4. Review
Role of Volunteers
5. Lecture
6. Review
Handouts/
Transparencies
Time
(mins.)
45
(1) Goals of the Workshop
30
(2) Guidelines for Being There
(2a) Facilitator’s Guide
(3) Helping Relationships
(3a) Facilitator’s Guide
(4) Rights and Responsibilities
BREAK
Policies
7. Policies and Procedures
8. Confidentiality Case Study
45
Relationships Within the Team
9. Lines of Responsibility
10. Team Introductions
30
Closing
11. Wrap-up Exercise
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INTRODUCTION TO VOLUNTEERS IN HOSPICE
PALLIATIVE CARE
Time allotment: 45 minutes
1. Welcome
ƒ
Welcome participants to orientation for
Volunteers in Hospice Palliative Care
for the program.
2. Warm-Up Exercise
Engage the participants in a discussion of
what they now think are the most important
roles of a Volunteer in Hospice Palliative
Care program.
Goals of the Workshop
ƒ
ƒ
ƒ
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To review the vision, mission, values
of hospice palliative care program of
insert name of program.
To review the general and specific
role(s) of the hospice palliative care
volunteer.
To discuss organizational and program
policies and procedures which
underpin the involvement of volunteer.
To underline the importance of
confidentiality.
4. Review
Record answers on the flipchart.
ƒ
Use their answers to assess whether
everyone is on track with your own
program requirements.
ƒ
Use exercise to pin point any potential
problems or misconceptions.
End exercise by giving participants a copy
of the written position description for review
later in the session (not included because
this will be specific to your program).
Briefly review the specific history of your
program and introduce the specific vision,
values and mission of your program.
If you are a part of a larger organization,
briefly discuss that organization and how
and where hospice palliative care fits into its
structure.
3. Workshop Goals
ƒ
Review goals of the orientation.
Use transparency/handout (1)
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THE ROLE OF VOLUNTEERS
Time allotment: 30 minutes
5. Lecture – “Being There” the role
of the Hospice Palliative Care
Volunteer
Help is most helpful when the person being
helped finds that it leads to greater
satisfaction, better performance or continued
growth. Your goal is always to help people
find their own path.
Use transparency/handout (2) and
facilitator’s guidelines (2A).
Section 4, Page 3 – Victoria Hospice Society
(See attached)
Review guidelines for “Being There”. As
you are meeting clients and families it may
be helpful to have some reminders of how to
build a comfortable working relationship.
This process begins with your first meeting
and continues throughout your contact.
Helping Relationships
Part of the way we may think about the
helping relationship is that those seeking
help have certain needs and that those
providing help have certain skills. While this
may be true, it is also a simplification. This
idea can trap us into thinking that having the
right answers is all that is required. Help
needs to be a search to find creative
solutions to continually changing problems.
It is important to remember that clients and
families come to us with strengths and
capabilities based on their life experiences.
As caregivers, we bring many things to
clients and their families - a soothing cloth,
a warm drink, and a kind word. However,
the most precious gift we bring is ourselves.
Use transparency/handout (3) and
facilitator’s guidelines (3A).
6. Review Volunteer roles in your
organization using your own position
description(s).
Encourage participants to ask questions and
discuss.
Introduce and distribute copies of any
policies and procedures and other
documentation, which volunteers may need,
which govern and support their roles.
Distribute handout (4) and briefly
discuss Rights and Responsibilities of
Volunteers.
BREAK
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POLICIES
Time allotment: 45 minutes
7. Polices and Procedures for
Volunteers
ƒ
ƒ
Distribute copies of your organizations
policies and procedures for volunteers.
(These should be part of your volunteer
manual.)
You will want to review the policies
that are specific to risk management.
These may include:
- Screening policy (justification)
- Policies to protect clients and
volunteers from:
Physical harm
Fire
Lifting
Personal liability
Use of vehicle
- Policies, which protect the
organization
Case Study:
Distribute handout Case Study (5) on
confidentiality, breaking into small groups
for discussion.
Debrief:
1. Use to illustrate the importance of
confidentiality.
2. Help them understand how difficult
maintaining strict confidentiality can be.
3. Review and discuss how to deal with the
need to share feelings and concerns without
being in breach of confidentiality.
In many cases the same policy will have
implications for all.
Discuss and deal with questions and
concerns.
8. Confidentiality
Review the organization’s policy on
confidentiality including the waivers which
volunteers have been asked to sign.
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RELATIONSHIPS WITHIN THE TEAM
11. Wrap - Up
Practicalities/Expectations
Time allotment: 30 minutes
9. Lines of Responsibility
ƒ
Discuss with volunteers who they must
report or consult with on the hospice
palliative care team in various
situations within the organization.
ƒ
Define their role as a member of the
team.
10. Team Introductions
Invite team members to the session to be
introduced and to introduce their role on the
team as well as their responsibilities to the
volunteers.
Go over some of the more mundane
practicalities:
ƒ
ƒ
ƒ
ƒ
ƒ
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Dress
Food/refreshments
Parking
Language
Use of equipment/telephones
Washrooms
Give participants an opportunity for final
questions.
Make certain they are aware of any next
steps.
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1. TRANSPARENCY / HANDOUT
Introduction to Volunteers in Hospice Palliative Care
Workshop Goals:
ƒ To review the vision, mission, values of the hospice palliative
care program of…;
ƒ To review the general and specific role(s) of the hospice
palliative care Volunteer;
ƒ To discuss organization and program policies and procedures
which underline the involvement of volunteers;
ƒ To underline the importance of confidentiality.
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2. TRANSPARENCY / HANDOUT
Guidelines for Being There:
ƒ Place yourself at same level
ƒ Use the person’s name
ƒ Provide privacy
ƒ Be yourself
ƒ Observe and match mood and behavior
ƒ Be guided by the client
ƒ Find common ground
ƒ Acknowledge even negative emotions
ƒ Be specific about how you can help
ƒ Set boundaries
ƒ Respond to opportunities to talk about death
ƒ Be respectful
Adapted from: Victoria Hospice Society Palliative Care For Home Support Workers 1995
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(2A) FACILITATOR’S GUIDE
Guidelines for Being There
As you are coming into people's homes, meeting the client and family, it may be helpful to have
some reminders about how to build a comfortable working relationship. This is a process that
begins with the first visit and continues throughout your contact.
ƒ
ƒ
ƒ
ƒ
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ƒ
ƒ
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ƒ
ƒ
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Place yourself at the same level as the person with whom you are visiting. Sit down, if only
for a few minutes.
Say the person's name. Establish with the person, how they wish to be addressed. A first
name may be preferred, or it may be experienced as patronizing to use the first name. A
"pet" name, for instance, is usually the prerogative of a special relationship.
Hearing your own name spoken is very grounding, especially when spoken by one who
cares for you. Do you remember how good it felt to hear you name incorporated into a song
at a campfire? It feels particularly good to be known and called by name when you find
yourself dependent and in a depersonalizing environment.
Offer the opportunity for privacy and uninterrupted time for unhurried discussion. Several
brief discussions may be better than a single lengthy one.
Be yourself. Be ordinary. Take time to settle in. Let the person take your measure. This is a
relationship; it cannot be one-sided.
Observe and match mood and behaviour. Do not pit your peace against anger, your
exuberance against depression, your openness against protectiveness.
Be guided by the client about how much contact is comfortable. Some people want eye
contact, physical contact. Others feel that it is an intrusion.
Find common ground as you share time together, e.g. explore interests, clients' preferences
in music, and their background.
Heaviness, sadness, anger, frustration, may need to be acknowledged before any further
issues are raised.
Be specific about how you can help and what is going to happen.
Set boundaries. Boundaries help people to feel safe; clients need to know what they can and
cannot expect from you. Outline how often you will be coming and what you expect to be
doing.
Respond to opportunities to talk about death. Not speaking of death suggests that it is too
terrible to be spoken of.
Be respectful. Helpers are ideally consultants who enter the lives of others with great
respect.
Victoria Hospice Society
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3. TRANSPARENCY / HANDOUT
Helping Relationships
ƒ Mutual Trust – Given in an atmosphere of mutual confidence,
warmth and acceptance.
ƒ Cooperative Learning – In the common task and goal of helping,
you and client are both teachers and learners – guided by the task,
not the helper. Both of you will have experiences and ideas to
share.
ƒ Openness – Feedback is essential in acquiring skills, knowledge
and attitudes.
ƒ Shared Problem Solving – It is most effective when you plan
together rather than making decisions for the client and family.
ƒ Autonomy – Interdependence, equality, and each partner in the
relationship maintains their freedom and responsibility for self.
Adapted from Victoria Hospice Society Palliative Care For Support Workers, 1995.
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(3A) FACILITATOR’S GUIDE
Aspects of the helping relationship to be aware of and pay attention to include
the following:
Mutual Trust
Given in an atmosphere of mutual confidence, warmth and acceptance. When the client feels
valued and worthwhile, then they can receive help because they trust what is said. At a deep
level, one who genuinely accepts another does not wish to change that person. A person, who is
accepted, is encouraged to determine their own goals and follow them at their own pace.
Cooperative Learning
In the common task and goal of helping, you and the client are both teachers and learners guided by the task, not the helper. Both of you will have experiences and ideas to share.
Openness
Feedback is essential in acquiring skills, knowledge and attitudes. You must know how others
feel and how they perceive things. You need to check out whether your understanding is correct
and be guided by the answers you receive. Requires candor, spontaneity and honesty. When
things are closed off from someone, the result is anxiety, resistance, suspicion, and resentment.
Shared Problem Solving
Most effective when you plan together rather than making decisions for the client and family.
Requires joint assessment of the problem, exploration of possible solutions and ongoing testing
and evaluation. What's wrong? What can we do about it? Is this working?
Autonomy
Interdependency, equality. Each partner in the relationship maintains their freedom and
responsibility for self. Power with another is greater than power over another.
Adapted from the Philosophy and Practice of Palliative Care. U. Vic. School of Nursing, 1993
Victoria Hospice Society.
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4. HANDOUT
Rights and Responsibilities of the Hospice Palliative Care Volunteer:
Rights:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
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To be assured that their role will support the needs of the dying person.
To be trusted to act responsibly by all members of the palliative care team.
To be fully integrated as a member of the hospice palliative care team.
To have a clearly defined role.
To be provided with the tools and resources to perform the role well (includes training and
orientation).
To be supported in the assigned role by apporpriately assigned staff.
To receive feedback on performance.
To have the opportunity to give feedback on the program and their assigned role.
To be protected against risk.
To receive recognition and thanks.
To be listened to.
To receive support for own grief generated because of the death of a client.
To have the freedom to leave without guilt.
Responsiblities:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
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To ensure that their acivties support the needs of the dying person.
To act responsibly as part of the hospice palliative care team.
To accept their role as a member of the hospice palliative care team.
To act within the parameters of their assigned role.
To accept the support and direction of assigned staff supervisors.
To accept and respond to feedback on performance.
To act within the risk management framework of the organization.
To value the role of other members of the hospice palliative care team.
To listen to the dying person, their family, and other members of the palliative care team.
To seek assistance for personal grief at the death of a client.
To leave when no longer able to fulfill the role.
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EVALUATION
EVALUATION
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Orientation
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of your participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
ORIENTATION
Client Advocate: Northwood Homecare
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Mission: In line with Northwood Homecare's mission to be the Atlantic Canadian leader in
promoting quality services to older adults, the client advocate brings a new and forward position
for the care of Northwood Homecare's clients.
Community Hospice Volunteer
Job Description
Position:
Community Hospice Volunteer
Department:
Hospice Services
Responsible to:
Senior Hospice Nurse/Delegate
Hours of Work:
As Assigned
Classification:
Hospice Volunteer
Purpose:
Enhance the quality of life for those who are terminally ill in the
community and to provide family support.
Qualifications:
Successful completion of the “Hospice Volunteer Training Program.”
Duties: The duties of community hospice volunteers can be as varied and innovative s their
imaginations will allow and may include some of the following tasks:
1) Companionship and support for clients and their families.
2) Remaining with the client during scheduled periods of absence of the primary care person.
3) Family shopping, letter writing, phone calls, reading, playing cards, etc.
4). Assisting client in taking medications as per Policies and Guidelines, as this is a very
restricted activity.
5) Accompanying the client for tests and treatment. (As per Policies and Guidelines.)
6) Giving help in whatever way is needed during the funeral time.
7) Providing bereavement follow-up and guidance.
Volunteers will NOT do nursing care since clients who need this will have visits from
Northwood Homecare staff.
Volunteers are not expected to surpass the role of family members, but their role will be to encourage
and support the client. Sometimes the duty of the volunteer will simply be to be there. Be present.
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NORTHWOOD
Volunteer Task Assignment
Volunteer Position:
Hospice Volunteer
Department:
Hospice Services
Supervisor: (Staff)
Senior Hospice Nurse/Hospice Nurse
Time Commitment:
Variable minimum 2-4 hours per week
Purpose:
To enhance the quality of life for those who have
suffered a loss and/or terminally ill.
Qualifications/Skills:
- Ability to listen/to hear the non-verbals
- Ability to accept residents as they are
- To have a good understanding of seniors, the grief process and the dying
process
- To be compassionate and caring
Age Requirement: 22+
Description of Duties:
1.
2.
3.
4.
To provide support, companionship, and comfort to terminally ill residents and
families at scheduled time per assignment.
To record visits and relay pertinent information to unit coordinator/hospice
staff.
To support bereaved family, residents, and/or staff as appropriate per
assignment.
To participate in ongoing support and education provided by Hospice
Services staff members for self-renewal and guidance.
Orientation Training:
-
To successfully complete the Hospice Course offered by Northwood Care or
another acceptable Hospice Course.
Benefits to Volunteer.
-
Opportunity to learn and grow, spirituality and emotionally by interacting with
seniors.
To help the volunteer accept their own mortality through vigil sitting.
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GENERAL GUIDELINES
For Hospice Palliative Care
Volunteers
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
When visiting in the hospital always wear your nametag. It is also helpful to the Hospital
Staff if you wear the navy jackets, which are available for Hospice Palliative Care
Volunteers (this also assists with your identification).
Please stop at the Nurses Station to introduce yourself and let them know whom you are
going to be visiting. You may also inquire as to the kind of day the patient is having and if
it is okay for them to have something to drink.
Introduce yourself when first visiting the patient and their family members.
Address them as Mrs. or Mr. (especially elderly patients) until they give you permission
to call them by their first name. Use your judgment if they are a younger person.
Ensure that they are comfortable with your presence.
Spend time with the patient while being sensitive to their need for private reflective times.
Short regular visits are often the best. Let the patient be your guide. Do not impose your
presence.
Polite conversation is appropriate to begin your visit, however idle conservation to just fill
the time is often not appreciated or helpful. Remember that silence can be very meaningful.
Silence has often been referred to as the "secret helper".
Actively listen to what the patient is saying. Remember to look for non-verbal cues (things
that their body language is telling you - this may be different from what they are verbally
saying to you). Avoid interrupting the patient when they are speaking to you.
Sit quietly. Be aware of your own body language and what it is conveying about you.
Be sensitive to the patients reaction as well as the spouse's/significant other's reaction
when touching the patient.
Remember when approaching the patient's room that the physician, clergy or staff
member may be talking with the patient and the family and may need to do this
privately - so be mindful of this. If it is okay to visit at that time, they will indicate
this to you. If visiting in the hospital you might consider waiting in one of the Quiet
Rooms until the patient is free. Sometimes this can be a good time to talk with family
members privately to see how they are coping.
Please do not discuss the patient’s condition with anyone i.e. – family members or
staff members when in the patient’s presence and especially not if the patient is
unresponsive. Remember it is thought that the patient’s hearing is the last sense to go.
Confidentiality is an absolute must! You must never discuss the patient’s condition,
their concerns, fears, and anxieties with anyone outside the Hospice Palliative Care
Team. The Hospice Palliative Care Team includes: the Hospice Palliative Care
Nurses, the Hospice Palliative Care Coordinator and the Hospice Palliative Care
Volunteers. This applies to conversations that you have with family members as well.
Never hesitate to call for help from a member of the Hospice Palliative Care Team.
Never give a patient medication.
If visiting in the hospital, remember to write a brief note regarding your visit.
Remember to be yourself. Your presence is a tremendous gift.
Source – Lunenburg & Queens Palliative Care Program, November 1998.
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QEII HEALTH SCIENCES CENTRE
Camp Hill Veterans' Memorial Building
Palliative Care Volunteer Assignment Guide
1. Objective
1.1 To work with unit staff and the Hospice Palliative Care Program Interdisciplinary
Team in providing assistance and support to Veterans and their loved ones who are
coping with a limited life expectancy, a health crisis and/or a loss.
2. Supervisor
2.1 Coordinator, Hospice Palliative Care Program for Long Term Care.
3. Location (in consultation with Supervisor)
3.1
3.2
3.3
Veterans' units or areas off units (i.e. to cafeteria, CHVMB Garden).
Out of Camp Hill Veterans' Memorial Building (i.e. to Public Gardens).
Areas/activities that are mutually agreeable to families and volunteers (i.e.
bereavement follow-up, walk).
4. Hours
4.1
4.2
Regular visiting – flexible, but arranged in advance with supervisor – minimum of
four hours weekly for the first year.
"On Call" - if available to do bedside vigil, volunteer may be called for a maximum of
four-hour shifts (for any twenty-four hour period).
5. Duties and Responsibilities
5.1
5.2
5.3
To contribute actively to the physical, psychosocial and spiritual welfare of the
Veterans and their loved ones.
To maintain strict confidentiality with regard to personal and medical information.
To make supportive contacts with Veterans and/or loved ones, which may include:
- Assisting with personal needs (i.e. letter writing, relieving family members at
the bedside).
- Under supervision of unit staff, assisting with feeding; before accepting feeding
assignments, volunteers must have attended the lecture on feeding/gag reflex
by a Dietician.
- Under supervision of unit staff, assisting with comfort measures (shaving, mouth
care, manicures, massage, positioning, transferring); before accepting assignments
that involve positioning/transferring, volunteers must have attended the lecture on
positioning/transferring given by a physiotherapist.
- Reporting to the Coordinator of Hospice Palliative Care, staff caring for that
Veteran or Social Worker, any pertinent information that might contribute to the
quality of the Veterans' care and/or life.
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-
Offering information and/or assistance with practical matters.
Providing support to families during the bereavement period.
5.4
May assist unit staff by accompanying Veterans when they go for
treatments/consultations to another institution.
5.5
May assist unit staff by visiting other Veterans if visit with terminally ill
Veterans and their loved ones is inappropriate at that particular time.
5.6
May be telephoned by coordinator or unit staff to sit at bedside of a dying
Veteran for a four-hour period throughout the day, evening or night shift as
mutually agreed upon by staff and volunteer.
5.7
May assist with office or library work, and other support programs.
6. Education, Training and Experience
6.1
Participation in the Hospice Palliative Care Volunteer Training Program.
6.2
6.3
Experience with death and/or bereavement may be an asset.
No recent major loss.
7. Orientation
7.1
7.2
To the Hospital - by Volunteer Services.
To Veterans' units - by Hospice Palliative Care Coordinator for Long Term Care,
unit staff and/or "seasoned" volunteers.
8. Evaluation
8.1
8.2
General evaluation by Volunteer Services six to nine weeks after commencing duties.
Ongoing evaluation between volunteer and supervisor, which serves as a primary,
support system and fosters personal growth.
9. Qualifications
9.1
9.2
9.3
9.4
Aptitudes:
- Ability to relate well to others.
- Ability to LISTEN.
Interests:
- Interest in holistic human growth and development.
- Variety of personal interest.
Temperament:
- Possesses characteristics of warmth, empathy and flexibility, creativity, sense of
humour, common sense and has the ability to self-nurture.
Good physical and mental health.
Source – Melanie Parsons-Brown, RN, BN Coordinator, Palliative Care Program – Long Term
Care
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Volunteer Log for Home Involvement
Patient Name:__________________________________________________________________
Volunteer Name:________________________________________________________________
Date
Time In
Time Out
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NORTHWOODCARE INCORPORATED
…a not-for-profit, community-based citizens' organization
VOLUNTEER RESOURCES CONFIDENTIALITY FORM
Preamble:
In the course of your duties you may learn intimate, personal facts about residents,
members of the Multi-Purpose Centre, other volunteers, and staff, their families and their
problems. In addition, you may have access to confidential corporate information. Never discuss
these matters with other people in or out of Volunteer Resources, other than with your supervisor
or the Director of Volunteer Resources.
The Declaration:
I have been made aware of the confidential nature of information, both verbal and written,
and understand that confidential information which may be disclosed to me or which may come to
my knowledge may not be divulged within or outside of Volunteer Resources unless required in
the performance of my normal duties or expressly authorized by any supervisor or the Director
Volunteer Resources.
Signature______________________________________Witness___________________________
Date__________________________________________
Procedure:
This form is to be signed by all volunteers at the onset of their participation as a volunteer.
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HOSPICE VOLUNTEER AGREEMENT
As a Hospice Volunteer, I agree to:
1. Carry out the philosophy of hospice.
2. Attend the complete hospice volunteer training program as well as attend on-going education
sessions and group support meetings.
3. Make a one-year commitment to the hospice program, and renew this commitment on an
annual basis.
4. Give notice in writing to the Hospice Director if at any time I am unable to fulfill my
commitment to hospice.
5. Spend a number of hours visiting patients each week (4-6 hours if possible).
6. Share my experiences as a volunteer in a monthly support meeting.
7. Volunteer my services to visit patients and their families without reimbursement for travel or
for services.
8. Respect the patient/family philosophy of life, religious preference, choice of treatment, etc.
As a volunteer I understand that:
1. My performance will be evaluated after three months and every six months thereafter.
2. The Hospice Director may discontinue my participation after discussion with me, if at any
time I am unable to satisfactorily fulfill my responsibilities as a hospice volunteer or comply
with the philosophy of the hospital
3. I will refer all professional needs of the patient to the appropriate persons.
4. My role is to provide presence to the patient and family as well as emotional support through
listening and caring.
5. I will hold in strictest confidence all information related to patient, family or staff.
VOLUNTEER SIGNATURE______________________________________________________
DATE ________________________________________________________________________
HOSPICE DIRECTOR___________________________________________________________
Source – Strait Richmond Hospice Program
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Volunteer Self-Evaluation
Name of Volunteer:______________________________________________________________
Postion:_______________________________________________________________________
Period Covered _________________________________________________________________
Date of Evaluation ______________________________________________________________
1.
Your goals/expectations related to this program
Not Achieved
Achieved
1. ________________________________________
1
2
3
4
5
2. ________________________________________
1
2
3
4
5
3. ________________________________________
1
2
3
4
5
2.
Attributes
1. Enthusiasm
Needs Improvement
Satisfactory
1
3
2
Excellent
4
5
Comments _________________________________________________________________
2. Initiative
1
2
3
4
5
Comments _________________________________________________________________
3. Cooperation
1
2
3
4
5
Comments _________________________________________________________________
4. Communication
1
2
3
4
5
Comments _________________________________________________________________
5. Empathy
1
2
3
4
5
Comments _________________________________________________________________
6. Decision Making Skills
1
2
3
4
5
Comments _________________________________________________________________
7. Organizational Skills
1
2
3
4
5
Comments __________________________________________________________________
8. Adaptability
1
2
3
4
5
Comments __________________________________________________________________
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3.
Relationships
Needs Improvement
Satisfactory
Excellent
1. Team Relations
1
2
3
4
5
(other staff)
Comments __________________________________________________________________
2. Volunteer Relations
1
2
3
4
5
Comments __________________________________________________________________
3. Client Relations
1
2
3
4
5
Comments __________________________________________________________________
4.
Most significant growth experience during period of evaluation: What helped you most
in you volunteer activities this year?
____________________________________________________________________________
____________________________________________________________________________
5.
What obstacles did you encounter in your volunteer activities this year?
_____________________________________________________________________________
_____________________________________________________________________________
6.
What major area in which change or further training would be desirable.
_____________________________________________________________________________
_____________________________________________________________________________
Signatures:
Volunteer: ____________________________________________________________________
Coordinator: __________________________________________________________________
Date: ________________________________________________________________________
Source – VON – National
From – VON Annapolis Valley
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MISSION
The Pictou County Health Authority strives for excellence in promoting a healthy community and
excellence in the delivery of health care services.
VISION
We will be seen as leaders in the development and delivery of a population health focused evidence-based
and values-driven approach to wellness, health care and healthy communities.
VALUES
These values will influence our decision making and performance:
Caring
We support and encourage compassion and caring as cornerstone values in our communities. Caring and
compassion are cornerstones to the services we provide to the community.
Individually Centered
We provide services and supports based on the person and on our population’s unique health needs and
characteristics.
We recognize that individuals have a right and a responsibility to control their own health; to have access
to the information and services that will enable healthy lifestyles; and the right to have their health
information held in confidence.
Dignity and Respect
We respect the dignity and worth of all persons in our communities, especially those being served by our
system and the staff who serve them.
Quality and Fairness
We strive to provide the highest quality care and service using evidence and outcome based decisions,
providing access to care through the rational distribution of available resources in order to do the greatest
good for the greatest number of people.
Collaboration
We work cooperatively and encourage participation of stakeholders in problem solving and decision
making.
Innovation
We are open to new ideas and the pursuit of new approaches to wellness, illness prevention and the
delivery of health care.
Fiscal Accountability
Resources will be managed and allocated in a rational, reasonable and cost effective manner.
January 2003
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VOLUNTEER SERVICES
Striving for Excellence Through Caring and Teamwork
MISSION
The mission of Volunteer Services is to support and enhance the endeavours of the staff by
providing services that complement and supplement essential services.
PHILOSOPHY
We believe that volunteers can provide necessary and meaningful supplementary services to the
patients and staff of the Pictou County Health Authority. We believe that volunteers contribute
to the delivery of comprehensive care as active team members.
PURPOSE
The purpose of Volunteer Services is to support the patients and staff by providing extra services
to patients and families within the hospital and community settings. Volunteer assignments
represent services that otherwise may not be provided. The primary objective is to increase
patient comfort. However, volunteers may complement support services when and where
appropriate.
GOALS AND OBJECTIVES
1.
To assess the need for volunteers, with the assistance of other hospital staff, to enhance
the services offered by the hospital and to provide quality care to our patients.
2.
To develop and implement volunteer programs to meet identified needs and to evaluate
and revise programs as needed.
3.
To recruit, screen and orient the volunteers required in order to staff the volunteer
programs.
4.
To supervise and evaluate the volunteers with assistance from the personnel in their
assigned areas.
5.
To maintain current policies and procedures to guide the functioning of the department.
6.
To promote and publicize volunteerism in the hospital and community settings and
provide recognition to our volunteers for their contributions to the health authority.
January 2003
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PLEDGE OF CONFIDENTIALITY
The purpose of the Pledge of Confidentiality is to ensure that all information, patient or
otherwise, is held in strict confidence. All information, which an employee/student/volunteer
may become aware of through his/her employment/placement, is to be held in strict confidence.
Confidentiality of information does not preclude access to and use of information by hospital
staff, students or volunteers in the performance of their duties. Employees/students/volunteers
are advised to refer to policies on confidentiality specific to their departments.
As an employee/student/volunteer of the Pictou County Health Authority, I have read the
hospital policy on confidentiality of information. I understand that all information, patient or
otherwise, to which I have access in the performance of my duties, is confidential and must not
be communicated except as outlined in hospital or departmental policy.
A breach of confidentiality will necessitate disciplinary action, which could lead to dismissal or
termination of placement.
_________________________
Employee/Student/Volunteer
_________________________
Witness
_________________________
Date
_________________________
Date
January 2003
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VOLUNTEER SERVICES
REFERENCE QUESTIONNAIRE
APPLICANT’S NAME:
______________________________________________________
PERSON CONTACTED: ______________________________________________________
TELEPHONE NUMBER: ______________________________________________________
REFERENCE TAKEN BY: ______________________________________________________
DATE COMPLETED:
______________________________________________________
QUESTIONS:
1. How long have you known the applicant and in what capacity?
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
2. Would you recommend the applicant to do volunteer work within a hospital setting?
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
3. What particular skills or abilities does the applicant possess?
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
4. Additional comments
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
January 2003
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HOSPICE
PALLIATIVE CARE
VOLUNTEER
TRAINING
PROGRAM
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Training Coordinator’s Resource Sheet
Introduction: It is your responsibility as the coordinator(s) of the training for the hospice
palliative care volunteers in your organization to ensure that the volunteers receive the training
that will help them to be comfortable with their role, understand the organizational and policy
structure within which they work, and provide quality care and service in a sensitive manner for
the patient and their families.
What does the Hospice Palliative Care Volunteer Training Program (HPCVTP) mean for
you and your program? The training program outlined in this section of the HPCVTP
RESOURCE MANUAL is a tool to aid you, your program and your volunteers. The modules as
outlined have been identified by your peers in Nova Scotia as the core components that hospice
palliative care volunteers across the province need in order to bring comfort, knowledge and
skills to their effort. Having this guide should make your job easier as you develop and adapt
your volunteer training program. It will also serve as an aid to your local trainers and resource
people in developing their sessions.
IT IS MEANT AS A HELPFUL TOOL, NOT AS AN IMPOSSIBLE DEMAND UPON
YOUR TIME AND RESOURCES. Please use it in that spirit and adapt it to the needs and
resources of your own trainers, program, volunteers and community.
How to use the Hospice Palliative Care Volunteer Training Program (HPCVTP) Materials.
This program honours the fact that each Hospice Palliative Care Volunteer Coordinator has
different realities to deal with, different human and financial resource levels, and different
approaches to training delivery. The actual training materials in the modules is taken mainly
from those developed by the CPCA and CACC in the Training Manual for Support Workers In
Palliative Care and Senior Care Palliative Care: Visiting Homemaker Training Program and
other similar resources. This ensures that the training your volunteers are receiving is based on
recognized national standards.
We also want to acknowledge that many of you have wonderful approaches to training and your
own favourite training resources. The trainers you use may also come with their own. You will
find some of these in the resource sections for each module. As long as the learning objectives
for each module are met, feel free to use what works best for you.
Time suggestions are given for each module as well. When possible a minimum and an ideal
time frame are stated. You and your trainers may be constrained by time and will need to follow
the minimum requirements. CAUTION! Remember that in doing this you will probably have
to cut the most interactive part of the workshops. These sections are probably where your
volunteers will learn the most about themselves, and their roles as volunteers and where you will
learn the most about them as potential volunteers.
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What is included in each module? Each module in the series will be laid out as follows.
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Facilitators guide to the module
Sample workshop agenda
Detailed overview of each module including
- Learning goals
- Suggested times
- Key elements
- Optional elements
Resource sheets for lecture content
Case studies and exercises from national curriculum
Master for transparencies and handout
Evaluation form
Optional resources from your peers in Nova Scotia
What else do I need to think of?
In choosing a facilitator for the program remember to look for:
ƒ Expertise and knowledge of the topic
ƒ Comfort with presenting to an audience
ƒ Understanding of what the session is attempting to accomplish
ƒ Ability to train at the level of the participants
ƒ Understanding of adult education principles
ƒ Commitment and reliability
Symbols Used:
Facilitator’s Guide
Transparency/Handout
! Ethical Alert
Handout
Time Allotment
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Facilitator’s General Resource Sheet
What is my main responsibility as a facilitator/resource person for the Hospice Palliative
Care Volunteer Training Program (HPCVTP)?
You will be helping to prepare volunteers to be a critical part of the hospice/palliative care
treatment team. You will play an important role in preparing them for their volunteer work with
the hospice palliative care patient and their families. You bring your knowledge, skills,
presentation and training skills to the effort. Because this program attempts to provide some
standardized approach to training for hospice palliative care volunteers in Nova Scotia, your
cooperation in using the module material provided is greatly appreciated. We hope that this
material will make your task easier for you.
What are the expectations of the facilitator/resource person?
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Expertise and knowledge of the topic you are covering.
Willingness to share this with local palliative care volunteers.
Comfort with presenting to an audience.
Clarification of expectations around the session with the training coordinator.
Use of the HPCVTP materials in preparation for the session.
Commitment and reliability.
Understanding and use of adult education principles.
What should I remember as a trainer? You will be dealing with adult learners, and just
remembering a few principles of adults as learners should help to make your session work for the
participants and for you. The adult learner:
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Brings an accumulated life experience to the session.
Will test what is presented against that experience.
Will not want to appear to fail in the learning situation.
Will want to know the practical application of the learning.
Will have different learning styles.
Will learn most through discussion and practice.
Will respond best to a variety of training tools and methods.
Also remember to that differing learning objectives require different approaches to training.
What do the HPCVTP modules contain?
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Trainers guide to the module
Sample workshop agenda
Detailed overview of each module including:
- Learning goals
- Suggested times
- Key elements
- Optional elements
Resource sheet for lecture content
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Case studies and exercises from national curricula
Master transparencies and handouts
Optional resources from other trainers in Nova Scotia which maybe substituted for similar
exercises
What else should I consider? If you are an experienced trainer you will have your own style
and method of presenting that works best for you. Use the module material in the way that best
suits you, but please be certain to cover the learning objectives for the module.
THANK YOU FOR BEING A TRAINER FOR THE HPCVTP.
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MODULE I
INTRODUCTION TO
HOSPICE PALLIATIVE CARE
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FACILITATOR’S OVERVIEW
Module I
Introduction to Hospice Palliative Care
General Course Description: Provides the volunteer with an overview of death in Canadian
society, and the values and philosophy behind hospice palliative care. Topics include death in
society, initial discussion of cultural difference in practices and attitudes towards death and
dying, the principles of hospice palliative care, norms of practice and the importance of the team
approach.
Learning Objectives: At the end of the session the participants will:
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Have a deeper knowledge of attitudes towards death in Canadian society.
Have begun to identify their own attitudes, beliefs and values about death.
Have considered and examined their own experiences of death.
Have a preliminary understanding of cultural differences in attitudes and beliefs surrounding
death.
Have reviewed the principles and norms of practice of hospice palliative care.
Understand how principles and norms assist with ethical decision making.
Have a good understanding of the team approach in the local setting and how they fit in as a
volunteer.
Recommended Time Frame: This session would be difficult to do in less than three (3) hours
but if the section on “ Working with People From Different Cultures” is left out might be
possible within (2) two to (2 1/2) two and a half hours.
Process: The facilitator should utilize a combination of short lectures/group discussions/case
studies/ and small group discussions. As this will and should be the first session in the training
time should be allowed up front for general introduction of the course, and for the participants to
get to know each other. The facilitator should make an effort to make the information as relevant
to the local community as is possible.
E.g. - The local history, cultural and ethnic make up of the local community could be discussed,
and how they may influence local attitudes and values about death and dying.
E.g. - The principles and values of your local hospice palliative care program may have been
articulated in slightly different ways than in the national material. Introduce these and use them
as hand out materials.
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Module I
SESSION OUTLINE AT A GLANCE
Introduction to Hospice Palliative Care
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Handouts/
Transparencies
Time
(mins.)
Introduction
1. Welcome
2. Warm-up Exercise
3. Workshop Goals
Review
20
Death in Canadian Society
4. Brainstorm Exercise
5. Lecture
6. Questionnaire Exercise
(1) Goals of the Workshop
60
(2) Death in Canadian Society
(3) Questionnaire
Optional: Working with people from Different Cultures
30
7. Lecture
(4) Culture and Death
8. Case Study Exercise
(5) Case Studies
(5a.) Facilitator’s Guide for (5)
BREAK
Philosophies of Palliative Care
9. Lecture
10. Questionnaire Exercise
11. Lecture
60
(6) The Principles of Hospice
(7) Making Ethical Decisions
(8) Applying the Principles
(9) Victoria Hospice….
(9a.) Facilitator’s Guide for (9)
(10) The Team Approach to Care
(11) Team Members
10
Closing
12. Wrap-up Exercise
(12) Dying Person’s Bill of Rights
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INTRODUCTION TO HOSPICE PALLIATIVE CARE
Total Time: 3 hours
Time Allotment: 20 minutes
1. Welcome
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Welcome participants to Introduction to
Hospice Palliative Care.
Explain that the focus of the workshop
will be on how society and life
experiences affect a person’s view of
death. The basic principles of
philosophic hospice palliative care will
also be examined.
2. Warm-up Exercise
The purpose of this exercise is to enable
group members to become acquainted with
each other and to set the stage for a
discussion of societal and personal attitudes
towards death and dying. The facilitator
should take note of the cultural diversity
within the group during the Warm-Up and
draw upon the group’s expertise throughout
the session to reinforce individual
differences.
ƒ
For example:
“Hi, my name is Jane Doe. I was born in
Ireland. My family emigrated to Canada
when I was very young. My religious
background is Roman Catholic”.
3. Workshop Goals
ƒ
Review the goals of the workshop with
the group.
Use transparency/handout (1).
Expected Learner Outcomes:
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To discuss death in Canadian society;
To identify personal attitudes, beliefs
and experiences with death;
To examine cultural and individual
differences in attitudes and beliefs
surrounding death;
To review the principles and norms of
practice of hospice palliative care;
To examine how principles under
ethical decision-making;
To learn about the team approach and
how to be an active member of a care
team.
Ask participants to introduce
themselves and briefly learn something
about their cultural and religious
background. The facilitator should start
by introducing herself/himself.
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DEATH IN CANADIAN SOCIETY
Time allotment: 60 minutes
4. Brainstorm Exercise – The
Canadian Portrayal of Death
The purpose of this exercise is to encourage
participants to identify how death is
portrayed in Canadian society, and to
understand that attitudes towards death are
varied.
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Ask participants to spontaneously call
out answers to each brainstorm
question.
Record responses on a flip chart.
After all ideas have been exhausted,
review the flip chart and point out
important ideas and themes.
Brainstorm Questions:
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If you started talking about death at a
party or other social gathering, how do
you think people would react to you?
You have been asked to describe what
death is like in Canadian society to a
group of visitors from another country.
What would you say to them?
5. Lecture Guide – Death in
Canadian Society
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Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
Keep in mind the points discussed
during the brainstorm exercise. If
possible, relate some of these points to
topics within the lecture.
Use transparency/handout (2) to
reinforce key ideas.
Canada can be described as a death
“denying” society. This means many
Canadians treat death as a “taboo” subject,
which is avoided. We do not want to talk
about or think about dying.
Question for the group: Do the majority of
your clients die at home or in an institution
such as a hospital or nursing home?
Death is not part of daily life in Canada.
Most deaths (70%) occur in the hospital
away from home and family.
Many Canadians believe that somehow they
can prevent death by seeking medical help.
Medicine and technology is becoming so
advanced, we have a false belief that doctors
can cure anything
Other information to include in lecture: ______________________________________________
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DEATH IN CANADIAN SOCIETY
6. Questionnaire Exercise – personal
feelings towards death
The purpose of this exercise is to illustrate
the range of individual experiences, feelings
and uneasiness towards death. In order to
work with dying persons, it is critical to sort
out feelings and fears about illness and
death.
Distribute handout (3) or similar local
resource.
Discuss in small groups and then debrief in
the group as a whole.
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WORKING WITH PEOPLE FROM DIFFERENT CULTURES
If you are leaving this part out include a few
key points in previous section.
Time Allotment: 30 minutes
7.
Lecture Guide – Respecting
cultural and religious beliefs
ƒ
Present the lecture; highlighting
important ideas listed below and
other content that you have chosen.
Use transparency/handout (4) to
reinforce key points.
A person’s cultural roots, ethnic background
and religious heritage will impact on his/her
attitudes towards death.
Families pass on rituals and beliefs about
death from generation to generation.
Ethnic groups differ from each other in what
they believe and in how they behave. It is
important to be sensitive to other people’s
beliefs and to be non-judgmental.
There is a vast range of responses to the
expression of pain, suffering and grief. The
ways in which these are expressed reflects
the background of the dying person and
his/her family.
It is impossible to know about every culture.
As a helper, it is important that you ask
questions. Learn what is helpful for each
dying person.
This topic will be dealt with more
extensively later.
Other information to include in lecture: (Suggestions: Research two different cultures and/or
religions that are represented in your community and include them as examples in this lecture.)
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
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THE PHILOSOPHIES OF HOSPICE PALLIATIVE CARE
8. Case Study Exercise – “Who’s
death is it anyway?”
Distribute handout (5).
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Read each case study aloud and ask
participants to call out answers to each
question.
Record responses on a flip chart.
After all ideas have been exhausted,
review the flip chart. Refer to
Facilitator’s guide (5a.) for a list of
appropriate responses.
BREAK
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THE PHILOSOPHIES OF HOSPICE PALLIATIVE CARE
Time Allotment: 60 minutes
9. Lecture guide – the principles of
hospice
Present the lecture; highlighting important
ideas listed below and other content that you
have chosen.
Use transparency/handout (6) to
reinforce key points.
Question for the group: What does the term
“hospice” or “palliative care” mean to you?
The idea of hospice or palliative care
initially began as a place of comfort for
weary travelers in Europe during the Middle
Ages. Today the modern hospice is more a
philosophy or way of thinking than an actual
place.
The terms palliative care and hospice care
are often used to mean the same thing.
These words refer to the compassionate care
of dying persons which is directed at
comfort and pain control. The goal of
hospice or palliative care is not to prolong
life, but to provide the best quality of life
during the final days before death.
Hospice care has four main goals, which are
important to understand when assisting the
dying person. These goals include: (i)
controlling pain and symptoms; (ii) ensuring
death is a natural process; (iii) providing
compassionate care and (iv) providing
bereavement follow-up.
!
Ethical Alert
Principles that underline ethical decisionmaking are: (i) respect for autonomy (ii)
non-maleficence (iii) beneficence (iv)
justice.
Use transparency/handout (7) to reinforce
key points.
Principles and values are used in developing
the Missions and Philosophy of Individual
Programs.
Use transparency/handout (8) Victoria
Hospice Society Mission Statement to
underline.
Other information to include in lecture:
_____________________________________________________________________________________
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THE PHILOSOPHIES OF HOSPICE PALLIATIVE CARE
10. Questionnaire Exercise –
Hospice values in practice
This exercise enables participants to apply
the philosophies of hospice or palliative care
to everyday practice.
Distribute handout (9)
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Each person should complete the
questionnaire.
Ask participants to get together in pairs
or small groups to discuss his/her
responses.
After participants have completed the
exercise, review with the class each
question and reinforce hospice
principles. Refer to Facilitator’s Guide
(9a.) for a list of some appropriate
responses.
11. Lecture Guide – The team
approach
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Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
A hospice palliative care team is a group of
people who work together with a common
goal to assist the dying person and his/her
family.
Use transparency/handout (11) to
review the palliative care team member’s
responsibilities.
Although the members of the team have
specific expertise, often their roles will
overlap. For example, a volunteer may be
involved in assisting clients with personal
care. The nurse may also provide a similar
role in bathing and monitoring skin
condition. In this situation, because the
roles overlap it is important for the
Volunteer and nurse to communicate with
one another.
Research and experience tells us that the
visiting volunteer is often the team member
who spends the most amount of time with
dying persons and their family. As a
volunteer, your contribution to the team is,
therefore, very important to ensuring the
dying person receives the best care possible.
Hospice palliative care is very demanding
and often requires the expertise of more than
one helper.
In order to function as a team, each person
must be aware of their own expertise and
role and that of their co-workers. Mutual
respect for one another is important. Good
communication and information sharing is
the key.
The philosophy of hospice in fact supports a
team approach.
Localize or adapt handout to include team
members in your area.
Use transparency/handout (10) to
reinforce key points.
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CLOSING
Time Allotment: 10 minutes
11. Wrap-up Exercise
Distribute handout (12) and briefly
review the dying person’s Bill of Rights.
Use Victoria Hospice Associations
Philosophy to show how adapted/adopted
as organizational philosophy.
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Ask participants to share one new idea
or hospice value they learned at this
workshop.
Distribute the evaluation forms of the
workshop.
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1. TRANSPARENCY/HANDOUT
Introduction to Hospice Palliative Care
Workshop Goals
ƒ To discuss death in Canadian Society;
ƒ To identify personal attitudes, beliefs and
experience with death;
ƒ To examine cultured and individual differences in
attitudes and beliefs surrounding death;
ƒ To review the principles and norms of practice of
hospice palliative care;
ƒ To examine principles under ethical decision
making;
ƒ To learn about the team approach and how to be
an active member of a care team.
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2. TRANSPARENCY/HANDOUT
DEATH IN CANADIAN SOCIETY
Canada is described as a death “denying” society
ƒ Death is described as the “ last taboo”
ƒ People avoid talking about death
Death is not a part of daily life in Canada
ƒ Today most deaths (70%) occur in the hospital
away from home and family
Medical advancements encourage people to
avoid thinking about death
ƒ Organ transplants and other medical miracles
are performed daily
ƒ Medicine is always advancing
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3. HANDOUT
PERSONAL FEELINGS ABOUT DEATH
Answer the following questions:
1. Death is ______________________________________
______________________________________________
2. What frightens me about death is: _________________
_______________________________________________
3. A corpse makes me feel: _________________________
_______________________________________________
4. Cemeteries are: ________________________________
_______________________________________________
5. Mourning about death is: ________________________
_______________________________________________
6. I could accept death when: _______________________
_______________________________________________
7. Life after death is: ______________________________
_______________________________________________
8. The soul is: ___________________________________
_______________________________________________
9. Heaven is: ____________________________________
_______________________________________________
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4. TRANSPARENCY/HANDOUT
CULTURE AND DEATH
Different cultural and religious groups have
different rituals, traditions and beliefs around:
− Caring for the sick
− Expression of pain and suffering
− Dying
− Death
− Funerals
− Grief
Families have rules and beliefs about death that
are passed from generation to generation.
Helpers must be tolerant of cultural differences
and respect the beliefs of others.
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5. HANDOUT
CASE STUDY ONE:
When you arrive at your client’s home you are greeted by her family. You are given some
instructions as to how you can assist their relative. You notice the family has lit several
candles and incense but you are not told about their significance. During your visit the
candles burn out and you are unsure what you should do.
How would you handle this situation? _____________________________________________
____________________________________________________________________________
____________________________________________________________________________
CASE STUDY TWO:
Your supervisor assigns a new case to you and outlines your responsibilities, which include
monitoring personal care. You arrive at your client’s home and realize that her family is
quite involved in caring for her. You are advised by the client’s son not to move the client
because the family believes a sick person should stay in bed as long as possible and not to
bath the client since they fear she could catch a chill. You note that the client has a strong
body odor and appears to have a bed sore.
How do you feel about the family’s beliefs? ________________________________________
____________________________________________________________________________
____________________________________________________________________________
How do you cope with this situation? _____________________________________________
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5A. FACILITATOR’S GUIDE
CASE STUDY ONE
CASE STUDY TWO
When you arrive at your client’s home you
are greeted by her family. You are given
some instructions as to how you can assist
their relative. You notice the family has lit
several candles and incense but you are not
told about their significance. During your
visit the candles burn out and you are unsure
what you should do.
Your supervisor assigns a new case to you
and outlines your responsibilities, which
include monitoring personal care. You arrive
at your client’s home and realize that her
family is quite involved in caring for her.
You are advised by the client’s son not to
move the client because the family believes a
sick person should stay in bed as long as
possible and not to bath the client because
they fear she could catch a chill. You note
that the client has a strong body odor and
appears to have a bed sore.
How would you handle this situation?
Appropriate Responses:
√
At the initial meeting, you ask the family
about the importance of the candles and
incense.
How do you feel about the family’s beliefs?
√
You might call your supervisor to
inquire about the family’s rituals.
How do you cope with this situation?
√
You discuss the significance of the
candles and incense with your client.
Appropriate Responses:
√
Respect the family’s wishes.
√
Be non-judgmental.
√
Report your observations to the visiting
nurse and your supervisor.
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6. TRANSPARENCY/HANDOUT
THE PRINCIPLES OF HOSPICE
Palliative care refers to the compassionate care of
dying persons.
The terms palliative care and hospice care are often
used to mean the same thing.
Goals of palliative care:
1)
pain and symptom control
2)
natural death
3)
compassionate care
4)
bereavement follow-up
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7. TRANSPARENCY/HANDOUT
MAKING ETHICAL DECISIONS
Four main values
1)
respect for autonomy
2)
non-maleficence
3)
beneficence
4)
justice
Those in providing care (including
volunteers) must also:
ƒ Follow Code of Conduct that mirrors those of
professionals.
ƒ Follow policies and procedures of organization
(which are also based in legislative framework).
ƒ Be accountable to client and organization for
which they volunteer.
Adapted from Hospice Association of Ontario Visiting Volunteer Training Manual.
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8. TRANSPARENCY/HANDOUT
VICTORIA HOSPICE SOCIETY MISSION STATEMENT
The mission of the Society is to enhance the quality of life and death of
persons facing death and bereavement through skilled and compassionate
physical, emotional and spiritual care.
PHILOSOPHY
The society believes that:
ƒ
Dying and grieving are natural to life.
ƒ
The patient and family is the unit of care (“family” is understood
to include significant others).
ƒ
It is the right of all persons facing death and bereavement to
maintain individuality and dignity.
ƒ
It is the right of the individual family to know and discuss, in
whatever terms they wish, the extent of the disease and its
implications.
ƒ
It is the right of the individual and the family to be involved,
according to ability, in the planning and choice of care.
ƒ
It is the right of all persons facing death and bereavement to
receive consistent physical, emotional and spiritual support.
ƒ
Effective care must be coordinated and consistent, reflecting a
common philosophy.
ƒ
It is essential that hospice caregivers have a commitment to
professional and personal growth.
Source: Victoria Hospice Society’s “Palliative Care for Home Support Workers,” Section 1, Page 6.
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9. HANDOUT
APPLYING THE PRINCIPLES OF HOSPICE PALLIATIVE CARE
Answer the following questions applying to the hospice philosophies discussed in class.
1.
A client you have been visiting regularly has decided to stop medical treatment for her
terminal cancer. She has refused any further radiation or chemotherapy.
How do you feel about her decision?
2.
One of your palliative client’s is complaining of pain. You think her morphine dosage
probably has to be changed. The nurse monitoring the medication will be visiting tomorrow
morning.
How do you react in this situation?
3.
Your client really enjoys reading the newspaper, but he is too weak to read it himself. If you
take the time to read the paper to him you will not be able to do other chores like vacuuming
and dusting.
What will you do?
4.
Mrs. Smith has been admitted to a palliative unit at a hospital. The family is very upset
because Mrs. Smith is no longer eating and the doctor refuses to allow any tube feeding or
intravenous fluids.
How do you feel about the hospital’s decision not to intervene and feed the client by artificial
means?
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9A. FACILITATOR’S GUIDE
Participants may respond either positively or
negatively to the questions depending on their
own personal values. It is important to
acknowledge each response and then to reinforce
hospice principles discussed in class and outlined
below.
1.
√
In this situation, it would be important to
contact your supervisor and report your
observation and request that the nurse be
notified immediately.
3.
Your client really enjoys reading the
newspaper, but he is too weak to read it
himself. If you take the time to read the
paper to him you will not be able to do other
chores like vacuuming and dusting. What
will you do?
A client you have been visiting regularly has
decided to stop medical treatment for her
terminal cancer. She has refused any further
radiation or chemotherapy. How do you feel
about her decision?
Hospice values:
Hospice values:
√
Hospice values in individual’s right to
decide what he/she wants.
√
People have a right to make decisions about
their medical treatment and care.
√
As a Volunteer, it is important that you
respect that person’s choice even if you do
not agree with it personally.
2.
One of your palliative client’s is
complaining of pain. You think her
morphine dosage probably has to be
changed. The nurse monitoring the
medication will be visiting tomorrow
morning. How do you react in this situation?
Hospice values:
√
Pain control is one of the main goals of
hospice or palliative care.
√
As a volunteer, you should try to see that a
client in pain receives immediate attention
and does not have to wait until the next
morning for help.
√
One of the goals of hospice is to ensure the
client has the best quality of life as possible.
√
If the client wants you to read the newspaper
to him, it is important that you do so and
leave the cleaning for another day.
4.
Mrs. Smith has been admitted to a palliative
unit at a hospital. The family is very upset
because Mrs. Smith is no longer eating and
the doctor refuses to allow any tube feeding
or intravenous fluids. How do you feel about
the hospital’s decision not to intervene and
feed the client by artificial means?
Hospice values:
√
Ensuring that death is a natural process is
one of the goals of hospice. This means that
life will not be prolonged by artificial
methods.
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10. TRANSPARENCY/HANDOUT
THE TEAM APPROACH TO CARE
Hospice supports a team approach because the help
provided is complex and cannot be carried out by one
care provider.
A palliative care team is a group of people who work
together with a common purpose to help the dying
person.
The volunteer is an important and valued member of
the team.
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11. TRANSPARENCY/HANDOUT
The palliative care team members in
the home.
Care Provider
General responsibilities.
Client and Caregivers
Central to the decision making process; should be
included in all discussions around care.
Chaplain
Provides spiritual and emotional support to dying
person and caregivers.
Assesses client needs and coordinates services in
the home.
Home Care Coordinator
Homemaker
Assists dying person with personal care and
household tasks; monitors client's situation and
reports significant observations; provides emotional
support to dying person and caregivers.
Hospice Volunteer
Provides emotional support and information to dying
person and caregivers.
Occupational Therapist
Teaches caregivers and dying person to complete
activities of daily living, provides emotional support
to dying person and caregivers.
Physician
Monitors dying person's health status, prescribes and
monitors medications for pain and symptom control,
educates and provides emotional support to dying
person and caregivers.
Physiotherapist
Teaches physical exercises and recommends
assistive devices to keep client as independent as
possible.
Social Worker
Provides dying person and caregivers with
supportive counseling.
Visiting Nurse
Monitors medications and assists with pain/
symptom control; assists with personal care;
educates and provides emotional support to dying
person and caregivers.
Other individuals may also be assisting the client
and family such as a nutritionist, music/art therapist
or massage therapist.
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12. TRANSPARENCY/HANDOUT
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EVALUATION
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EVALUATION
Module I
Introduction to Palliative Care
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
INTRODUCTION TO HOSPICE PALLIATIVE CARE
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Eastern Shore Palliative Care Association
PHILOSOPHY
We believe that the quality of our lived experience should reflect compassion, human dignity and
respect for every individual.
MISSION STATEMENT
The mission of the Eastern Shore Palliative Care Association is to provide palliative care to the
communities that lie in the general catchments area of the Eastern Shore Memorial Hospital.
This service will be provided in collaboration with the Eastern Shore Memorial Hospital,
volunteers, and other health related resources.
Palliative care shall be provided by a team comprised of volunteers supported by health care
professionals and clergy.
The association recognizes the need for caring versus curing, through supportive treatment,
symptom control, assistance in relieving discomfort, and helping to alleviate distress by being
available to the terminally ill and their caregivers.
The Palliative Care Association is holistic in its approach and encompasses the patient, the
family, and the community in its scope of function.
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Eastern Shore Palliative Care Association
PRINCIPLES OF VOLUNTEERISM IN PALLIATIVE CARE
A:
1.
Palliative Care Volunteers function as a part of a team to provide palliative care.
2.
The role of the volunteer is to provide comfort, emotional support and alleviation
of fear and anxiety.
3.
We recognize the family as a unit of care, regardless whether the patient is at
home or in the hospital. The importance of contact with the family is crucial.
4.
The volunteer must be aware of his/her "contact person" - the one to contact if
any question arises.
5.
The volunteer must be aware of proper handling and disposal of hazardous
materials (WHMIS), and universal body precautions.
The most important way to prevent spread of infection is by proper hand washing.
Practice proper hand-washing techniques on entering a home and prior to leaving as
well as other appropriate times.
At times it may be appropriate to wear protective gloves. These will be supplied
when necessary.
6.
If the volunteer is sick, he or she should not visit a patient, as his or her ability to
fight infection is already low.
7.
Volunteers are requested to record pertinent information in an appropriate
way. (Keeping a chart may not be appropriate for everyone.)
8.
Volunteers are asked to assist in the evaluation of the program to improve the
services provided by the program.
9.
Volunteers are not to act as replacements for paid workers.
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Eastern Shore Palliative Care Association
WHAT WE VALUE --- PALLIATIVE CARE
‚
People stay at home as long as possible.
‚
Independence/mobility.
‚
Dignity/respect - that the dying person remains integrated in community/family.
‚
Health
‚
Comfort
‚
Usefulness... give love as well as receive it.
‚
Self-esteem/lack of guilt.
‚
Care for the caregiver.
‚
Honesty about what is happening. Privacy/company.
‚
Right to say "no" / the right to choose.
‚
A certain sense of continuity, predictability in what happens.
‚
Phone contact.
‚
Safety/sense of security/protection from crime, accidents, etc..../lifeline.
‚
Sense of belonging... of knowing someone cares.
‚
Peace/serenity/calmness.
‚
Access to spiritual counseling/relationship to God and neighbour.
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Eastern Shore Palliative Care Association
PERSPECTIVES ON DYING
Personal Questionnaire:
1. My first personal involvement with dying was with:
a)
b)
c)
d)
e)
f)
g)
2.
When I was young, the subject of dying was talked about in my family:
a)
b)
c)
d)
e)
3.
Openly;
With some sense of discomfort;
Only when necessary and then with an attempt to exclude me;
As though it were a taboo subject;
Never recall any discussion.
My childhood concept of what happens after death is best described as:
a)
b)
c)
d)
e)
f)
g)
h)
4.
Grandparent or great-grandparent;
Parent;
Brother or sister;
Other family member;
Friend or acquaintance;
Public figure;
Pet.
Heaven-and-hell;
After-life;
A sleep;
Cessation of all physical and mental activity;
Mysterious and unknowable;
Something other than the above;
No concept;
Can’t remember.
Today, my concept of what happens after death is:
a)
b)
c)
d)
e)
f)
g)
Heaven-and-hell
After-life;
A sleep;
Cessation of all physical and mental activity;
Mysterious and unknowable;
Something other than the above;
No concept;
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5.
My present attitudes toward dying have been most influenced by:
a)
b)
c)
d)
e)
f)
g)
h)
6.
The role that religion has played in the development of my attitudes about dying is:
a)
b)
c)
d)
e)
7.
Very frequently (at least once a day)
Frequently
Constantly
Rarely (no more than once a year)
Very rarely or never.
To me, death means:
a)
b)
c)
d)
e)
f)
9.
Very important;
Rather important;
Somewhat, but not major;
Relatively minor;
Nothing at all.
I think about dying:
a)
b)
c)
d)
e)
8.
Death of someone close;
Specific reading;
Religious upbringing;
Introspection and meditation;
Ritual (e.g., funerals)
TV, radio or motion pictures;
Longevity of my family;
My health or physical condition.
The end; the final process of life;
The beginning of a life after death;
A joining of the spirit with universal cosmic consciousness;
A kind of endless sleep; rest and peace;
Termination of this life but with survival of the spirit;
Don’t know.
To me, the most disagreeable aspect to my death would be:
a)
b)
c)
d)
e)
f)
g)
No longer be able to have experiences;
Be afraid of what might happen to my body;
Be uncertain of what might happen to me if there is a life after death;
No longer be able to provide for my family;
Cause grief to my relatives and friends;
Not be able to complete
Die painfully.
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10. I feel that the cause of most deaths:
a) Results directly from the conscious efforts of the persons who die;
b) Has a strong component of conscious or unconscious participation by the persons
who die (in their habits and use, misuse, non-use or abuse of drugs, alcohol,
medicine, etc.);
c) Is not discernible; they are caused by events over which individuals have no
control.
11. I _________________________ believe that psychological factors can influence or even
cause a person to begin dying.
a)
b)
c)
d)
Firmly;
Tend to;
Do and don’t;
Don’t.
12. When I think of dying, or when circumstances make we aware of my own mortality, I feel:
a)
b)
c)
d)
e)
f)
Fearful;
Discouraged;
Depressed;
Purposeless;
Resolved, in relation to life;
Pleasure, in being alive.
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ATTITUDES TOWARD DEATH
BACKGROUND: One of the most difficult experiences each of us must face sometime or other is the death of a
loved one. No matter how well we try to prepare for it, we are still set back by the sudden void in our lives.
Some investigators have found a general pattern exhibited by individuals as they learn of their terminal illness or
imminent death. The first reaction is one of disbelief. There is an inability to accept the truth. Next, there is a
searching for a cause or reason. This reaction may be expressed by the person asking, “Why me? Why do I have to
die?”
This phrase is followed by one of anger, anger about impending death and anger at those closely associated with the
person. Often the anger phase slips into one of bargaining. In this phase the person tries to exchange model
behaviour for special rewards. For example, the person may say to the doctor, “If I take all the medicine and follow
the rest routines, can I go home for the weekend?”
The bargaining phase is followed by one of depression, and the person mourns for past experiences that can never
happen again. Finally, there is the stage of recognizing the unavoidable and then an acceptance by the individual
that death is part of life.
Certain psychologists feel that one reason we find death so hard to cope with is that we refuse to think about it until
it happens. Perhaps a better understanding of death, our feelings toward it, and our fears about it would make the
actual experience of the death of a loved one less difficult.
ACTIVITY: The questions that follow are meant to help you examine your own attitude towards death. Answer
them alone. Then, you may wish to share them with a close friend or relative. It might be interesting to have one of
your parents answer the same questions and then compare the answers. Check the most appropriate response, or
write in one of your own.
1. How was death talked about in your family when you were young?
a) Openly
d) As if it were a taboo topic
b) Only when necessary and then with an attempt to c) Never recall any discussion in my family of death
exclude
d) With some discomfort
2. Which of the following best describes how death was explained to you?
a) When people die, they go to heaven if they are
c) There is life after death
good
b) Dying is like taking a trip, or going away for a
d) Dying is like going to sleep
while
3. Who died in your first experience with death?
a) Grandparent
b) Parent
c) Brother or sister
d) Other member of family
e)
f)
g)
h)
Personal friend
Friend of family
Public figure
Pet or animal
4. Which of the following best describes your present feelings about death?
a) You either go to heaven or hell
d) Death is the end-physically and mentally
b) There is an after-life
e) Death is unknowable
c) Death is like sleep
f) Other
5. If you were dying of something incurable, which would you prefer?
a) To be told
d) To die in hospital
b) Not to be told
e) To be conscious
c) To die at home
f) To be unconscious
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ATTITUDES TOWARDS DEATH –Page 2
6. If you knew you had just one year to live, which would you do?
a) Quit school or work and travel
d) Worry so much I couldn’t enjoy anything
b) Try to get as many new experiences as I could
e) Be very good to everyone
c) Go on with what I am doing
7. How often do you think of your own death?
a) Very often (once a day)
b) Often (once a week)
c) Occasionally (once a month)
d)
e)
f)
Rarely (no more than once a year)
Very rarely
Never
8. If you could choose when you would die, which would you choose?
a) Youth
b) Early middle age
c) Late middle age
d) Old age
9. Suicides result from people’s feelings about themselves. If you were to commit suicide, which of these
reasons would motivate you most?
a) To get even
e) Loneliness
b) To hurt someone
f) Death of a loved one
c) Fear of insanity
g) Family trouble
d) Physical illness or pain
h) Other
10. When people attend funerals, some show grief by crying.
people could show grief by crying?
a) Boy, under 7
e)
b) Boy, ages 7 – 12
f)
c) Boy, ages 12 - 18
g)
d) Girl, under 7
h)
According to your standards who of these
Girl, ages 7 - 12
Girl, ages 12 - 18
Man
Woman
11. Which of the following statements reflects your feelings about people who are terminally ill?
d) They should be “put to sleep” by a doctor if they so
a) They should be allowed to die (by withholding of
request.
treatment) if they so request.
b) They should be allowed to die at their own request
e) They should be “put to sleep” by a doctor even if it
or at the request of the family.
isn’t requested.
c) They should be given all possible treatment to
prolong their lives.
12. Which of the selections in 11 would you choose to apply in the case of your own terminal illness?
__________________________________________________________________________________
13. Rank the following cause of death from most to least preferred.
a) Cancer of the lung
e) Die saving another’s life
b) Sudden death in auto accident
f) Killed in natural disaster
c) Old age
g) Suicide
d) Killed fighting in war
h) Heart attack
14. If you were told you were going to die soon, but that before you died you could live over and change three
things you had done, what three things in your life would you choose?
A. __________________________________________________
B. __________________________________________________
C. __________________________________________________
As provided by Annapolis Valley Branch VON
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MODULE II
COMMUNICATION SKILLS
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FACILITATOR’S OVERVIEW
Module II
Communication Skills
General Course Description: The volunteer will focus on effective communication and its role
in hospice palliative care. The participants will explore the communication needs of the dying
and their families and learn practical ways to communicate more effectively.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
Have a greater understanding of the communication needs of the dying person and his/her
family
Will have an expanded repertoire of practical communication tools
Will be able to discuss verbal and non-verbal communication skills
Recommended Time Frame: This session has been designed for a three (3) hour time frame.
Because this is such a key component of working successfully with the dying it should not be
reduced in length. This session could in fact be expanded to include more time for participants to
practice skills.
Process: The facilitator should utilize a combination of short lectures/group discussions/audiovisual aids/and role-plays. Because this session is so important to the role of the volunteer in
palliative care, more time may be allocated by the facilitator and extra resources and exercises
may be brought into the session.
ƒ The facilitator should make an effort to make the session as interactive as possible, building
on the volunteers existing communication skills and teaching new ones.
ƒ The coordinator and facilitator should utilize this session as a screening mechanism for
assessing the potential volunteers aptitudes for helping in the hospice palliative care setting.
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Module II
SESSION OUTLINE AT A GLANCE
Communication Skills
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Handouts/
Transparencies
Time
(mins.)
Introduction
1. Welcome
2. Workshop Goals
3. Warm-up Exercise
Review
20
Communicating with Dying People
4. Lecture
5. Experiential Exercise
6. Video and Discussion
(1) Objectives
(2) Talking to the Dying Person
90
(3) Doing
(4) & (4a) Communication Tips
BREAK
Effective Communication Skills
7. Lecture
8. Exercise Skills Building
Communication With Families
9. Lecture
50
(5) Active Listening
(6) Empathizing
(7) Open Ended Questions
(8) & (8a) Effective Communicators
10
(9) Communication With Families
Closing
10
10. Wrap-up Exercise
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INTRODUCTION TO COMMUNICATION SKILLS
Total Time: 3 hours
3. Warm-up exercise
Time Allotment: 20 minutes
1. Welcome
ƒ
ƒ
Welcome participants to the
workshop on "Communication
Skills".
Explain that the focus of the workshop
will be on learning how to
communicate effectively with dying
persons and their families.
2. Workshop goals
ƒ
Review the goals of the workshop
with the group.
The purpose of this warm-up exercise is
to encourage participants to identify the
components of goal communication.
ƒ Ask participants to spontaneously
call out answers to the question.
ƒ Record responses on a flipchart.
ƒ If you were a client training a new
volunteer in palliative care, what
advice would you give to help him/her
communicate more effectively?
(Possible responses: listen carefully,
try to understand your client's
situation, be pleasant, be honest, ask
questions, speak clearly, smile,
maintain eye contact...)
ƒ After all ideas have been exhausted,
review the flip chart and point out
themes to be discussed in the
workshop.
Use transparency/handout (1).
Goals of the Workshop:
-
To explore the communication needs
of the dying person and his/her
family;
To learn ways of communicating
more effectively;
To understand verbal and non-verbal
communication skills;
To understand the importance of
listening;
To discuss barriers of communications.
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COMMUNICATING WITH DYING PEOPLE
Time Allotment: 90 minutes
4. Lecture – communicating with the
dying person
ƒ
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
Use transparency/handout (2) & (3)
to reinforce key points.
Supportive communication in hospice
palliative care involves "being" and
"listening", not doing. The most important
thing the volunteer can provide to a dying
person and his/her family is the gift of
presence. This refers to the ability of the
worker to simply be with the client and
family, to listen to their reactions, feelings
and concerns in a non-judgmental way.
Communication with the dying person is
most helpful when realistic hope is
maintained. Avoid statements such as
"everything will be fine" or "you are going
to get better". Such statements can isolate
the dying person and increase his/her
anxiety.
The dying person may want to talk about
death or reminisce about life. If your client
dwells on the disappointment in his/her life,
ask about some positive memories. For
example, "tell me about some of the happier
times in your life" or "tell me about your
family".
As a helper, you should allow your client to
talk about these issues and not change the
subject. Avoid statements that prevent the
person from discussing death. For example,
never say, "let's not talk about that" or "you
are just upsetting yourself".
Not every person will choose to talk about
death or intimate feelings. This is okay and
must be respected. Accept the way the
person is feeling at the time and do not try
and force conversation or set expectations
for him/her.
In the final days of caring, non-verbal
communication may be used more than
spoken words. For example, changes in
breathing, opening or fluttering eyelids or
changing the grip of a handhold, may all
convey certain information. The palliative
care volunteer needs to be sensitive to subtle
non-verbal cues.
The volunteer must also be sensitive to the
messages he/she is sending to the dying
person. It is realistic to expect that the sick
person will be able to understand what is
being said. Never talk about the dying
person in his/her presence. Acknowledge the
dying person and try and include him/her in
the conversation.
Other information to include in lecture:
___________________________________________________________________________________
___________________________________________________________________________________
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COMMUNICATING WITH DYING PEOPLE
5. Experimental Exercise –
Horizontal Talking: A
Different Perspective
The purpose of this exercise is to encourage
participants to put themselves in the dying
person's situation. Many dying people spend
a lot of time lying down and talking to
others from a horizontal position. This can
foster feelings of vulnerability and loss of
control.
ƒ
ƒ
ƒ
ƒ
Request that participants get together
in pairs.
Ask one of the partners to lie down
on the floor and the other to stand. In
this position, participants should
carry on a five-minute conversation
and then switch.
At the conclusion of the exercise
ask participants to share their
experience with the group. (i.e.
What was it like talking to someone
from a lying down position? How
did it make you feel? Were you
comfortable? How did you feel in
the standing position? Were you
more in control of the conversation?
Were you comfortable talking down
at someone?)
Ask participants how they could
facilitate communication with
people who are bedridden (Possible
responses: Sit in a chair beside the
bed; Bend over or kneel when
talking so you are at eye level...).
6. Video and Discussion
“Communicating with the Dying
Person”
Choose a video that illustrates the issue of
communicating effectively with the dying
person. Tips are provided for active
listening and honest discussion of death.
Items required for exercise:
- Videocassette player
- Television
- An appropriate video
ƒ
ƒ
ƒ
Begin by introducing the video.
Ask participants to put themselves in
the position of persons now
communicating with the dying. How
would they feel and react in a similar
situation?
Start the video and pause for
discussion when appropriate.
Possible Discussion Questions:
How would you feel if you were
this person?
How do you think the dying
person is feeling?
How comfortable would you feel in this
situation?
*Almost any good video, which deals with
dying, will help with illustrating
communication.
Distribute handout (4) on communication
tips. Review parts of the handout, which
you feel require more discussion.
BREAK
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EFFECTIVE COMMUNICATIONS SKILLS
Time Allotment: 50 minutes
7. Building Effective
Communications Skills
ƒ
Present the material on effective
communications skills
Use transparency/handout (5), (6),
(7) to reinforce key points.
Distribute Handout (8)
8. Exercise: Skills building
Have participants break into triads. Each of
them in turn should talk about a particularly
difficult time in their lives. One person
should be the listener/communicator and the
third person the observer.
The listener/communicator should practice
active listening/empathizing/open-ended
questions skills.
The person recounting the story and the
observer should give feedback to the
listener/communicator.
Time the exercise so each person has an
opportunity to try each role.
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COMMUNICATING WITH FAMILIES
Time Allotment: 10 minutes
9. Lecture - communicating with
families
ƒ
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
Use handout 9 to reinforce key
points.
Families also need to talk about their
feelings and concerns. It is natural for the
family to be anxious and upset. They may
be afraid of the imagined effects of the
disease such as choking, suffocating and
uncontrolled pain. Supporting the family
means being a good listener, being nonjudgmental and providing honest
reassurance.
Including family members in decisions
around the dying person's care can help
them feel more in control. Spend time with
family reviewing your role and asking them
for input. Establishing a good relationship
with the family can reassure them that you
are a competent member of the team
providing their loved one with excellent
care.
Facing death is extremely stressful and can
trigger reactions and emotions that are
rooted in long standing relationships. For
example, an adult child may be unable to
comfort a dying parent. This may seem
cruel or unacceptable given the parent's
condition. However, the adult child's
reaction may be related to past wrong
doings or conflicts that you do not know
about or understand. It is hard not to be
judgmental in these situations, but it is
important to respect and to try and
understand each person's issues.
Other information to include in lecture:
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________
CLOSING
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Time Allotment: 10 minutes
10. Wrap-up Exercise
ƒ
Ask participants to share one new
communication skill that they will try to
practice in their work.
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1. TRANSPARENCY/HANDOUT
COMMUNICATION SKILLS IN HOSPICE
PALLIATIVE CARE
WORKSHOP GOALS:
ƒ To explore the communication needs of the dying
person and his/her family;
ƒ To learn ways of communicating effectively;
ƒ To understand verbal and non-verbal
communication skills;
ƒ To understand the importance of listening;
ƒ To discuss barriers to communications.
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2. TRANSPARENCY/HANDOUT
TALKING TO THE DYING PERSON
How to communicate effectively:
1)
2)
Listen to your client's feelings and concerns in a nonjudgmental way.
Help maintain realistic hope.
3)
Allow person to talk about death or reminisce about life.
4)
Avoid statements such as: "Everything will be fine." "You
are going to get better." "You'll be back to your old self
soon." "Let's not talk about that."
Respect each person's way of communicating - do not try to
force conversation. Some people may choose not to talk
about their death.
Be aware of non-verbal communication.
5)
Include the person in conversations
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3. TRANSPARENCY/HANDOUT
Doing
Being
What do I say?
How do I listen?
Don’t just sit there, do
something!
Don’t just do
something, sit there!
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4. TRANSPARENCY/HANDOUT
COMMUNICATION TIPS
ƒ Always be honest and upfront with dying persons and their families. Do
not say anything that is not true.
For example, avoid common clichés such as "Everything will work out." or
"You'll be back to your old self in no time".
ƒ Support hope as much as possible.
For example, a client may say, "I'm going to beat this disease". An
inappropriate response would be, "I think you are being unrealistic; your
cancer is terminal". An honest and more appropriate response that supports
hope would be, "It's good that you have a positive outlook".
ƒ Accept the client and family's reactions and feelings. Do not argue with the
person who is in the stage of denial. Denial may be a defense mechanism that
enables the person to cope and helpers have no right to take that away. Also,
do not take anger or resentments personally. Individuals may need to
alleviate some of the anger and frustration they feel by directing it at
palliative care workers. In this situation, discussing feelings and being
supportive can be helpful.
For example, a family member who lashes out at the volunteer may fully
expect an argument. An appropriate response to diffuse the situation would
be, "You sound upset, let's talk about it".
ƒ
Disclose accurate and appropriate information. Because the volunteer spends
a lot of time with the dying person and his/her family, she may be asked
questions that she cannot answer. Rather than avoiding the questions or
providing an untrue answer, the volunteer should acknowledge the
importance of the question and direct the client to the person who can
address the concerns.
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4A. HANDOUT
For example, if a client asks the volunteer if his illness is terminal, she could respond by saying: "It
sounds like you are very concerned about your illness. Your doctor will be able to answer your
medical questions. Let's write down your concerns and you can ask the doctor at your next visit".
ƒ
Respect the client's personal space. Each culture will have certain rules regarding how close
people get to one another during conversation. It can be very uncomfortable for the client if the
helper gets too close or the client may feel rejected if the helper maintains too much distance.
ƒ Ensure confidentiality. Client confidentiality should be maintained and reinforced. Sharing
information with other team members is, however, appropriate. Volunteers should explain to
their clients/family that information that is important to their care will be discussed with other
hospice palliative care team members. It is also a good practice to inform the client/family
when information is going to be shared. For example, if the client is confiding in the volunteer
about his pain, she could respond, "I want to mention your pain to the nurse so she can help
you".
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5. TRANSPARENCY/HANDOUT
Active Listening
Demonstrate interest through
- Eye contact
- Body posture
- Verbal following
- Being relaxed
- Establishing trust
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6. TRANSPARENCY/HANDOUT
Empathizing
- Put yourself in other’s situation
- Sensitivity to feelings of others
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7. TRANSPARENCY/HANDOUT
Open – ended Questions
Use:
What? When? Where? How?
Elicits: Information and feelings
Avoid:
Are? Is? Do? Did?
Elicits: Yes/No responses
Use Sparingly:
Why?
May not be able to answer, may put on the
defensive.
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8. HANDOUT
EFFECTIVE COMMUNICATORS ARE GOOD AT:
(1)
Active Listening
Being an active listener means using appropriate eye contact, attentive
body language and verbal following.
-
-
Eye contact - Dying persons may receive messages of rejection
constantly. Some friends and family have a difficult time looking
at a person who is wasting away or who is disfigured from the
illness. Good eye contact conveys the message that the dying
person is accepted and valued.
Attentive body language - A good listener is perceived as attentive
and interested through the following gestures:
Relaxed posture
Slightly leaning forward of the body
Head nodding
Interested facial expression
Warm, animated tone of voice
Appropriate closeness
-
Verbal following - The good listener should interject periodically
and say something to the person speaking that demonstrates he/she
has been paying attention.
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8A. HANDOUT
(2)
Empathizing
Empathizing refers to the ability to put oneself in someone else's situation.
Those working in hospice palliative care will be more effective at
communicating if they try to understand what the client and family are
going through. This understanding can result in more sensitivity to the
feelings and actions of dying persons and their families.
(3)
Using Open-Ended Questions
Open-ended questions are more effective in eliciting conversation than
closed-ended questions. For example, a closed-ended question such as
"Are you feeling good?" will result in a "no" or "yes" answer. The same
question re-worded to be open-ended such as “How are you feeling today”
will promote more discussion.
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9. TRANSPARENCY/HANDOUT
COMMUNICATING WITH FAMILIES
How to support the family in crisis:
1) Be a good listener
2) Respond in a non-judgmental way
3) Provide honest reassurance
4) Consult with the family and keep them informed
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EVALUATION
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EVALUATION
Module II
Communication Skills
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
COMMUNICATION
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PERSON FIRST LANGUAGE
Samples to Use and Share
Instead Of
The handicapped or the disabled.
The mentally retarded or he’s retarded.
She’s a Down’s.
Birth defect.
Wheelchair bound or confined to a wheelchair.
She is developmentally delayed.
He’s crippled; lame.
She’s a dwarf (or midget).
Mute.
Is learning disabled or LD.
Afflicted with suffers from victim of burdened
with.
She’s emotionally disturbed; she’s crazy.
Normal and/or healthy.
Quadriplegic, schizophrenic, autistic, epileptic.
She’s in Special Ed.
Handicapped parking.
Blind man.
Is spastic.
The deaf.
Person First Language
People with disabilities.
People with mental retardation or he has a
cognitive impairment.
She has Down Syndrome.
Congenital disability.
Uses a wheelchair for mobility or is a
wheelchair user.
She has a developmental delay.
He has an orthopedic disability, she has a
physical disability.
She has short stature.
Is nonverbal.
Has a learning disability.
Person who has…
She has an emotional disability.
A person without a disability.
He has quadriplegia, schizophrenia, autism,
and epilepsy.
She receives Special Ed services.
Accessible parking.
Man who has a visual impairment man who is
blind.
Has spastic muscles.
Has a hearing impairment.
Source – Unknown
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BUILDING A RELATIONSHIP WITH THE PATIENT
As the volunteer approaches a new patient who is ill and struggling with questions of the meaning of life,
the question of how to communicate across the natural barriers existing between two people who have
previously been strangers becomes a prime concern. Christine Allen, a teacher of philosophy and a
volunteer with the Royal Victoria Hospital in their Palliative Care service, proposes the following
framework:
1. DISCOVERY OF COMMON GROUND:
We often remember vividly a particular patient who "seemed so much like us." For the most part
when we meet a new patient, we are struck by a sense of difference that needs to be overcome. It is
useful therefore to build a foundation in the relationship by seeking out common factors. Factors that
may be shared include age, sex, marital status, nationality, language, social class, work experience,
personality pattern, experience of grief, religious framework, etc. When some common ground is
discovered, it is possible to move on to the second stage.
2. EXPLORATION OF DIFFERENCES:
The most dramatic difference lies in the illness of the patient and the wellness of the visitor. Early in the
relationship the visitor can say something like, “You know I have never experienced serious illness. "I
will only be able to understand what you are going through if you tell me what it is like." That leaves the
patient free to discuss the illness, or to move on to less sensitive areas. Reviewing life experiences
together helps so restore perspective on a life distorted by excess preoccupation with illness. The patient
can again appreciate being unique with a unique set of experiences. Reliving the positive contributions of
a lifetime in work, family, and relationships can help to counter the sense of uselessness and futility so
common in advanced disease. It can help to reinforce the strength that has carried the patient through past
crises; for example, a belief in God or in self, or a sense of collective identity with particular people.
3. MUTUAL RELEASE OF ENERGIES:
As the patient and visitor open something of themselves to each other, there is a sense of
discovery in the relationship, bringing the possibility of growth. In certain situations
something new is created in the relationship that goes beyond the two people involved.
Sometimes there may be a language barrier or the inability of the patient to speak because of
extreme weakness or confusion. In these instances, it is the simple daily acts of caring that
show your concern.
4. CREATIVE LISTENING
The first duty of love is to listen. Because listening seems to be purely passive we do not see
it as an act of kindness. Yet, in reality listening to someone involves more then the ears, it
requires the heart and the intellect as well. Too many genuinely compassionate people make
poor listeners. In their haste to respond and to help the situation causing the pain, they break
in with advice and solutions before they hear the whole story. They fail to realize that part of
the benefit gained through a discussion of problems and fears lies simply in their
verbalization, in confronting and expressing their reality. A creative listener is neither
critical nor judgmental...instead accepts you as you are... whether they approved of your
personality or not. Active listening is a skill to be learned; it does not come effort and
practice.
Source – Cape Breton Health Care Complex, Volunteer Handbook, 1994.
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MODULE III
PSYCHOSOCIAL ELEMENTS OF DYING
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FACILITATOR’S OVERVIEW
Module III
Psycho/social Elements of Dying
General Course Description: Provides the volunteer with some knowledge and understanding
of the psychosocial impact of the physical changes that may occur in the dying process. It will
briefly discuss the defined stages of dying while reinforcing the understanding that everyone’s
experience is unique.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
ƒ
ƒ
Have a greater understanding of the physical losses, which come with the dying process;
Have a greater understanding of the psychosocial needs of the dying person;
Have discussed the ethical issues of what a dying person should be told about their illness;
Have examined in greater depth their own potential emotional response to death and dying;
Have a greater understanding of some of the stages which dying people may go through.
Recommended Time Frame: This session is designed to be delivered in approximately three
hours. It could be combined with the section from Module I on “Working with People from
Different Cultures” or with Module IV on “Spiritual Issues in Dying”
Process: The facilitator should utilize a combination of small group discussions, short lectures,
large group feedback and case studies.
Lots of opportunity for participant discussion should be allowed so the participants can think
more deeply about and express their own response to death and dying.
Be certain to explain that spiritual issues are very important and cannot be ignored. These will be
dealt with in a separate module but are also integral to physical and psychosocial issues.
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Module III
SESSION OUTLINE AT A GLANCE
Psychosocial Elements of Dying/Stages of Dying
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Handouts/
Transparencies
Time
(mins.)
30
Introduction
1. Welcome
2. Warm-up Exercise
3. Workshop Goals
(1) Warm-up Worksheet
(1a) Facilitator’s Guide
(2) Goals of the Workshop
Understanding the Dying Person’s Experience
4. Sensitization Exercise
5. Lecture
80
(3) You Have a Serious Illness
(4) Understanding the Dying Person
(5) Physical Needs
*Ethical Alert
6. Case Study
(6) Ethical Principles
(7) Case Study
Closing
10
7. Wrap-up
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INTRODUCTION TO PSYCHO/SOCIAL ELEMENTS OF DYING
Total Time: 3 hours
Time Allotment: 30 minutes
-
1. Welcome
-
Welcome participants to the workshop
on the Psychosocial elements of dying.
Explain that the focus of the
workshop will be on exploring the
impact of terminal illness on the
psychosocial health of the dying
person and families.
2. Warm-up Exercise
The purpose of this exercise is to
highlight that people express their
emotions in a variety of ways. Each
person is unique and there are no set rules
to determine how someone should exhibit
a specific emotion.
- Ask participants to get into small
groups of 3 - 5 persons.
- Request each group to assign one
person to be the recorder.
Distribute handout (1).
-
Instruct the groups to list different
ways people express their feelings for
each emotion listed on the handout.
Inform participants they will have five
minutes to come up with as many
responses as possible.
*Spiritual needs to be dealt with in Module IV.
-
After the time has elapsed, ask each
group the number of responses they
recorded.
Get groups to spontaneously call out
answers. Record responses on a flip
chart. (Refer to facilitator's guide (la)
for a list of possible responses.)
End the exercise by indicating that
there are a variety of ways to express
one emotion. There is no good or bad
way, and how a person shows feelings
depends on his/her personality, family
norms, cultural background and past
experiences. Indicate that emotional
reactions to illness and death and dying
will be discussed further in this
workshop.
3. Workshop Goals
• Review the goals of the workshop with
the group.
Use transparency/handout (2).
Goals of the Workshop:
- To examine the physical and
psychosocial needs of the dying
person;*
- To consider ethical issues around
communicating information and
responding to the dying person;
- To increase awareness of the various
ways individuals may react to the
threat of dying;
To come to terms with our own
emotions and feelings about dying that
may impact on our abilities to interact
with the dying.
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UNDERSTANDING THE DYING PERSON'S
EXPERIENCE
Time Allotment: 80 minutes
Question for the group: Why do you think
people react so differently to illness?
4. Sensitization Exercise - "You
have a serious illness"
Use transparency/handout (4) to
reinforce key points.
This sensitization exercise will trigger
discussion about the participant's reactions
to impending death. This will also provide
the group with a look at individual
perspectives on dying.
Ask participants to get together in pairs or
small groups to complete the exercise.
The dying client will experience a number
of changes throughout the illness.
Examples include changes in the body, in
the concept of future, in independence, in
abilities and in relationships. Quality care,
therefore, must attempt to meet the person's
physical, psychological, social and spiritual
needs.
Distribute handout (3).
Each person should complete the handout
and discuss his/her responses. After
participants have completed the exercise,
bring everyone together and review the
following questions:
How did this exercise make you feel? Which
questions were difficult to answer? Question
for the group: Why do you think people
react so differently to illness?
5. Lecture Guide - Understanding
the dying person's experience
Present the lecture; highlighting important
ideas listed below and other content that you
have chosen.
The knowledge that one is dying is not easy.
It arouses a wide range of emotions.
Each individual will react differently to their
illness and the prospect of death.
One of the most difficult changes is the fact
that the dying person must rely more and
more on others.
Question for the group: Try to remember a
time when you were required to depend on
someone. What did that feel like?
Use transparency/handout (5).
Some terminal illnesses will advance
rapidly while most will be gradual.
As the disease progresses, activities such as
walking, eating and breathing will become
more and more difficult to perform and
eventually will be compromised.
The loss of body parts through amputation
or mastectomy is common. Other changes
in appearance may include fluid retention,
muscle waste, hair loss and skin
discolouration. The impact of such changes
can cause considerable damage to a
person's self-esteem.
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Question for the group: How does it make
you feel when you see a person who is
disfigured or missing a body part?
Terminally ill people may experience a
variety of physical symptoms such as pain,
loss of appetite, shortness of breath, body
odour, and skin problems.
A person will grieve physical losses and
may express feelings of sadness,
depression, anxiety and anger.
Individuals will react differently to the
knowledge of one's impending death
depending on where the person is in the life
cycle. For an elderly person it may come
with a sense of inevitability, for someone
who is middle-aged with a sense of life
being cut short and for a child with a sense
of chaos.
Having a terminal illness does not change a
person. People do not alter their personality
and the way they think just because they
know they have a terminal illness. They
will continue to be the same person they
have always been.
Family and friends tend to act unnaturally
around a dying person. Instead of dealing
with the situation they may pretend nothing
is wrong. Depending on the situation this
can be extremely frustrating for the dying
individual.
Because someone is terminally ill does not
mean they are incapable of doing things. In
fact they should be encouraged to do as
much as they can for as long as they can.
Dying clients should be given an
opportunity to express their feelings
whatever they may be.
Question for the group: From your
experience, what were (are) some of your
client's emotional reactions to dying?
(Possible responses: anger, fear, frustration
or sadness.)
Question for the group: What are some of
the fears of the dying person?
(Possible responses: fear of the unknown,
fear of being a burden, fear of loss of
family and friends, fear of loss of selfcontrol, fear of suffering and pain, fear of
loneliness.)
There are no clear-cut rules on how a
person should react to a life-threatening
illness. People do not go through the
process of dying according to some
textbook.
Explain that many people turn to
spirituality to help them make sense of their
illness and give them the strength to
continue. This issue will be dealt with in a
separate module.
5A.
!
Ethical Alert
Review the ethical principles from Module I
Use transparency/handout (6)
-
Respect for autonomy
Non-maleficence
Beneficence
Justice
An ethical concern that can be faced with
the dying is making decisions on how much
information the client should receive. The
client may wish for more information than
their families may wish for them to receive.
Discuss as a group bearing in mind the
ethical principles.
Also: What do you say when you don’t
know what is the best thing to do or say?
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UNDERSTANDING THE DYING PERSON’S
EXPERIENCE
Optional: In small groups ask participants
to discuss their own personal ethics and
how they make decisions when they face
ethical dilemmas.
Distribute handout (7).
ƒ
Read case study aloud and ask the
groups to discuss.
ƒ
Bring everyone together; record the
groups' responses on a flip chart.
6. Case Study Exercise
The purpose of this exercise is to help
participants identify the physical,
psychosocial needs of a dying person.
Ask participants to get into small groups of
between 3-5 persons.
Time allotment: 10 minutes
Wrap-up
ƒ
Ask participants to share one new idea
or insight which they got from the
session.
ƒ
Distribute the evaluation forms.
Other information to include in lecture:
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1. HANDOUT
EMOTIONAL REACTIONS
Indicate how you show the following feelings:
Sadness___________________________________
Pain______________________________________
Fear______________________________________
Joy_______________________________________
Nervous___________________________________
Shock_____________________________________
Anger_____________________________________
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1A. FACILITATOR'S GUIDE
EMOTIONAL REACTIONS
Possible Responses:
Sadness
Withdraw
Pace
Act jittery
Cry
Become agitated
Nervous
Bite fingernails
Talk a lot
Fidget
Break out in a rash
Mumble
Become excited
Pain
Complain
Cry
Moan
Become hysterical
Grin and bear it
Shock
Become forgetful
Slow down
Stare into space
Fear
Become agitated
Laugh
Cry
Joke
Fidget
Hide
Become hysterical
Faint
Anger
Scream
Argue with others
Become aggressive
Refuse to talk
Raise voice
Stutter
Become hysterical
Joy
Jump and dance
Smile
Cry
Hug
Laugh
Joke
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2. TRANSPARENCY/HANDOUT
PSYCHOSOCIAL ELEMENTS OF DYING
WORKSHOP GOALS:
ƒ To examine the physical, and psychosocial need of
the dying person;
ƒ To consider ethical issues around communicating
information and responding to the dying person;
ƒ To increase awareness of the various ways
individuals may react to the threat of dying;
ƒ To come to terms with our own emotions and
feelings about dying that may impact on our
abilities to interact with the dying.
* Spiritual needs to be dealt with in Module IV
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3. HANDOUT
“YOU HAVE A SERIOUS ILLNESS”
Imagine your doctor has told you that you have a serious type
of cancer:
My reaction to the news would be: ____________________________
I would worry most about: ___________________________________
I would worry least about: ___________________________________
The thought of losing my hair or breast or having a colostomy is:
_________________________________________________________
My family would react to the news by: __________________________
I would tell my friends: _______________________________________
The worst thing about having cancer would be: ___________________
_________________________________________________________
The most important thing in my life would be: ____________________
_________________________________________________________
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4. TRANSPARENCY/HANDOUT
THE DYING CLIENT'S EXPERIENCE
ƒ A dying person has to face a number of changes
which include:
1) Changes in their body
2) Changes in the way they think about their future
3) Changes in their independence
4) Changes in their abilities
5) Changes in their relationships with others
ƒ A quality care of the dying involves addressing all
of the following needs:
1) Physical
2) Psychological
3) Social
4) Spiritual
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5. TRANSPARENCY/HANDOUT
PHYSICAL NEEDS
ƒ Some illnesses will advance rapidly, most will advance
gradually.
ƒ Activities such as walking, eating, breathing, sleeping, going
to the bathroom, will eventually become difficult.
ƒ A person's body will change in appearance due to problems
such as fluid retention, muscle waste, hair loss, pallor or
jaundice.
ƒ A person may exhibit one, all, or none of the physical
symptoms such as pain, lack of appetite, shortness of breath,
body odour and skin problems.
ƒ A person will respond with grief to his/her losses and express
feelings of sadness, depression, anxiety and anger.
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6. TRANSPARENCY/HANDOUT
ETHICAL PRINCIPLES
ƒ Respect for autonomy
ƒ Non-Maleficence
ƒ Beneficence
ƒ Justice
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7. HANDOUT
CASE STUDY
Mr. Lewis is a 69-year-old widow who lives alone in a onebedroom apartment. He has been living in the same apartment
building for over 12 years. He was diagnosed with colon cancer
a year and a half ago. He has undergone extensive chemotherapy
and radiation. He was recently told that the cancer is terminal.
The doctor has no more therapy to offer. Mr. Lewis used to be
an active senior, a fanatic for physical conditioning and quite the
socialite. Since his illness, he has isolated himself from his
friends at the local YMCA and no longer participates in the
weekly bingo at his local parish.
Mr. Lewis is on pain medication. The surgery he underwent has
left him with a colostomy. He has constant diarrhea. He finds
the odour embarrassing as well as the need to rely on help for
personal care. His strength is failing. He is mentally alert but is
often depressed.
Identify and discuss some of the client's needs as they relate to
the following categories:
1) Physical Needs:
2) Psychosocial Needs:
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EVALUATION
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EVALUATION
Module III
Psychosocial Elements of Dying
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
PSYCHOSOCIAL ELEMENTS OF DYING
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As the Time of Death Nears..........
At the Time of Death.........
We realize that in the final stage of your friend or loved one's terminal illness, your anxiety
reaches its peak and your anticipation of the unknown prompts many questions in your mind. In an
attempt to answer some of these questions, we have prepared the following information for you. It
consists of the signs which precede death in most people as their body systems slow down and finally
cease functioning. For some people these signs appear a few hours before death; for others, a few
days. There is no particular order in which these events occur, and some people do not experience all
of them. We hope that by knowing what to expect, you will be comfortable in continuing to provide
to your loved one the same loving support which has sustained him or her during the illness. We have
included some suggestions for promoting the comfort of your friend or loved one as these signs
occur. We feel that during this final stage of life, there are no "rights" and "wrongs". Whatever you
feel like doing for your loved one is the "right" thing for you to do. This may be no more than sitting
or lying with him or her and communicating the comforting, assurance that you are there.
AS THE TIME OF DEATH NEARS .......
1.
There will be less interest in eating and drinking. For many patients refusal of food is an
indication that they are ready to die. Fluid intake may be limited to that which. will keep their
mouth from feeling too dry.
What you can do: Offer, but do not force, food, fluids, and medications. Pain which has required
medication to control in the past may no longer be a problem.
2.
Urinary output may decrease in amount and frequency.
What you can do: Nothing, unless the patient expresses a desire to urinate and cannot. Call
your nurse for advice.
3.
As the body weakens, the patient will sleep more and begin to detach himself from his
environment. The caregiver's attempts to make him more comfortable may be refused.
What you can do: Let him sleep.
**At this point, being with is more important than doing for**
4.
Mental confusion may become apparent as less oxygen is available to supply the brain. The patient
may be disturbed by "strange" dreams.
What you can do: As he awakens from periods of sleep, remind him of the day and time, where he
is, and who is present. This is best done in a casual, conversational way.
5.
Vision and hearing may become somewhat impaired, and speech may be difficult to understand.
What you can do: Speak clearly but no more loudly than necessary. Keep the room as light as the
patient wishes, even at night. Carry on all conversations as if they can be heard, since hearing is
the last of the senses to cease functioning. Many patients are able to talk until minutes before death
and are reassured by the exchange of a few words with a loved one.
6.
Secretions may collect in the back of the throat and rattle or gurgle as the patient breathes through
his mouth. He may try to cough up this mucus. His mouth may become dry and encrusted with
secretions.
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What you can do: If the patient is trying to cough up secretions and is experiencing choking or
vomiting, humidification of the air with a cool mist vaporizer may help. Otherwise, call your nurse for
advice.
Secretions may drain from the mouth if the patient is placed on his side and supported with
pillows.
Cleansing the mouth with swabs dipped in glycerin or mineral oil or even cool water will help to relieve
the dryness that occurs with mouth breathing.
Offer water in small amounts to keep the mouth moist. A straw with one finger placed over the
end can be used to transfer sips of water to the patient's mouth.
7.
Breathing may become irregular with periods of no breathing, or apnea, lasting around 20 to 30
seconds. The patient may seem to be working very hard to breathe and may make a moaning sound
with each breath. As the time of death nears, breathing may again become regular but shallower
and more mechanical in nature.
What you can do: Raise the head of the bed if the patient breathes more easily this way. The
"moaning" is not necessarily indicative of pain or distress but often is only the sound of air passing
over very relaxed vocal cords.
8.
As the oxygen supply to the brain decreases, the patient may become restless. It is not unusual
for patients to pull at bed linens, to have visual hallucinations, or even try to get out of bed at
this point.
What you can do: Reassure the patient in a calm voice that you are there. Prevent him from
falling if he tries to get out of bed. Soft music or a back rub may help quiet him.
9.
The patient may feel hot one minute and cold the next as the body loses its ability to control its
temperature. As circulation slows down, the arms and legs will become cool and may be bluish
in color. The underside of the body may darken. It may be impossible to feel a pulse at the wrist.
What you can do: Provide and remove blankets (not electric) as needed. Sponge the patient with
a cool washcloth if this promotes comfort. Change perspiration-soaked garments and bed linens
if the patient wishes.
10. Loss of control of bladder and bowel function may occur around the time of death.
What you can do: Protect the mattress with plastic. Keep Chux or waterproof padding under the
patient, and change as needed to keep the patient comfortable.
AT THE TIME OF DEATH.......
Breathing ceases.
Heartbeat ceases.
The patient cannot be aroused.
The eyelids may be partially open with the eyes in a fixed state.
The mouth may fall open slightly as the jaw relaxes.
A ny wa s te matter in the bladder or rectum will be released as the sphincter muscles relax.
As provided by Annapolis Valley VON.
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3 – STAGE MODEL
OF
THE PROCESS OF DYING
BEGINNING
MIDDLE
END
I realize I might die from this
disease.
I realize I will die, but am not
dying now.
I am dying.
INITIAL STAGE
CHRONIC STAGE
FINAL STAGE
(Facing the treat)
(Being ill)
(Acceptance)
‚
‚
‚
‚
‚
‚
‚
‚
‚
‚
‚
‚
Fear
Anxiety
Shock
Disbelief
Anger
Denial
Guilt
Humor
Hope/despair
Bargain
(May include any or all.)
‚
‚
Resolution of those parts of
the acute reactions that are
resolvable.
The INTENSITY is
dismissed.
DEPRESSION is very
common.
‚
Defined by the patient’s
acceptance of death.
Acceptance is USEFUL,
occurs in most cases but not
necessary to face death
“normally” provided the
patient is not distressed, is
communicating normally,
and is making decisions
normally.
(For some patients this phase
does not exist. Some people are
incapable of resolving the
intensity of their emotional
response and remain full-throttle
to the end.
Source – Cape Breton Health Care Complex Volunteer Handbook, 1994.
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MODULE IV
SPIRITUAL ISSUES
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FACILITATOR’S OVERVIEW
Module IV
Spiritual Issues
General Course Description: Provides the volunteer with an understanding of the spiritual
dimension to dying and some of the issues that the dying may be facing around sense of
meaning.
The participants should come away understanding that spirituality does not always equate with a
particular religious perspective or observance. They will spend some time considering their own
approaches to spirituality as a preparation for dealing with the dying client on this issue.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
ƒ
Have a greater understanding of the spiritual issues of the dying person;
Have a greater self-knowledge of their own approaches to spiritual issues;
Have an understanding that spiritual approaches are often culturally based;
Have some understanding of how they might support the dying person in addressing their
spiritual issues.
Recommended Time Frame: This session is designed to be delivered in approximately 1½
hours. It could be combined with Module III “ Psychosocial elements of Dying/Stages of Dying
and should be linked in some way to the section from Module I on “Working with People from
Different Cultures”.
Process: The facilitator should utilize a combination of short lectures, individual and group
exercises and general group discussion. This may be an area of some discomfort for some of the
participants and the facilitator should take that into account when eliciting discussion.
If the facilitator is a representative of a particular religious group he/she should show
considerable consideration for adherents from other faiths, cultures and for non-believers.
The facilitator should be aware of the difference between “spirituality” in its broadest
sense and “religion” and “religious beliefs” as they are more narrowly defined. The
facilitator will need to ensure that workshops participants go away understanding the
difference and that the dying can have spiritual concerns without adhering to formal
religious practice.
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Module IV
SESSION OUTLINE AT A GLANCE
Spiritual Issues
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
1. Welcome
2. Warm-up Exercise
3. Workshop Goals
Guidelines for Spiritual Support
4. Lecture
5. Ethical Will
Handouts/
Transparencies
Time
(mins.)
30
(1) Spirituality – The Search for Meaning
(2) Goals of the Workshop
60
(3) Spiritual Needs
(4) Definitions
(5) Guidelines for Spiritual Support
(6) Exercise
Closing
10
6. Wrap-up Exercise
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INTRODUCTION TO SPIRITUAL ISSUES
Total Time: 11/2 hours
3. Workshop Goals
Time Allotment: 30 minutes
ƒ
Review the goals of the workshop with
participants.
1. Welcome
ƒ
ƒ
Welcome participants to the Module on
Spirituality Issues.
Explain the focus of the workshop will
be an exploration of spiritual issues as
they affect the dying person and as an
extension of their physical and
psychological needs.
2. Warm-Up Exercise
The purpose of the exercise is to have
participants think about their own
spirituality and “search for meaning”, and
how this might reflect on the similar needs
of the dying person.
ƒ
ƒ
ƒ
Transparency/handout
Goals of Workshop:
ƒ To examine the spiritual needs of the
dying person;
ƒ To have participants examine their own
comfort with the spiritual needs of the
dying person;
ƒ To give guidance to participants for use
in their interaction around spiritual
issues with people who are dying.
Distribute Handout (1)
Instruct people to complete the exercise
for themselves in five minutes
Using a flipchart, give participants a
chance to raise what they see may be
spiritual issues around dying (do not put
anyone under pressure as these may be
issues some people will feel
uncomfortable sharing).
End the exercise by explaining that
most dying people will search for some
meaning in their life and experience.
They may see this as spiritual issues or
not. Each person’s own approach to
these issues must be respected.
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GUIDELINES FOR SPIRITUAL SUPPORT
beliefs. The volunteer can be supportive by
listening in a non-judgemental way.
Time Allotment: 50 minutes
4. Lecture Guide – Understanding
the Dying Person’s Spiritual Needs
ƒ
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
The knowledge that one is dying is not
easy. It arouses a wide range of emotions.
Each individual will react differently to
their illness and the prospect of death.
Use transparency/handout (3) to
illustrate.
Many people turn to spirituality and/or
religion to help them make sense of their
illness and give them the strength to
continue.
There are several religions in existence; the
major ones include Judaism, Hinduism,
Buddhism, Islamism and Christianity. Each
religion has it’s own set of beliefs and
practices. Each religion has views on the
after life, burial rites, expected attitudes of
the dying and the meaning of life and death.
Question for the group: What guidance does
your religion, if you have one, give on how
you should face illness and death?
When providing care, it is not appropriate
for the volunteer to impose his/her own
religious beliefs on the dying person. The
volunteer with strong religious beliefs may
demonstrate his/her faith not by preaching,
but through actions of caring and respect.
Use transparency/handout (4) to
illustrate.
“Spirituality is the energy within each
person that looks for meaning and purpose
in life. It is a unifying and integrating factor
among humans. Spirituality is expressed
through a vast array of means both formal
and informal. Religion is an expression of
spirituality reflected in a system of beliefs
and practices related to the sacred and
uniting its adherents in community.
Religions are expressed through sacred
writings, codes of behavior, rituals and
ceremonies.”
Hospice volunteers can play an important
role in supporting the dying person in their
search for meaning.
(1) Adapted from Core Concepts in Hospice
Palliative Care Module 6, Spiritual and
Cultural Issues, Dr. Bob Kemp Hospice,
Stoney Cree, ON 2002.
Used in Hospice Association of Ontario:
Visiting Volunteer Trainer Manual, 2002.
It is important to make an effort to
understand the dying person’s religion
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5. Exercise: An Ethical Will
The purpose of this exercise is to help
participants explore their sense of personal
spiritual values. The last “will and
testament” usually deals with strictly
material items people want to pass on. The
ethical will, will concern the non-material:
values, beliefs, feelings, hopes that one
would like to offer to specific people.
Distribute handout (5).
ƒ
ƒ
Have participants spend 20 minutes
writing an ethical will.
Bring everyone together to debrief using
these questions:
How did you feel about the exercise?
What did you learn from the exercise
about what you value?
How comfortable are you sharing this?
Discuss how this exercise might help
you in dealing with client’s issues in
spirituality.
Other issues to include in the discussion:
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
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CLOSING
Time Allotment: 10 minutes
6. Wrap-up
ƒ
Read a favorite poem or quote about
death related to the topic.
Suggested:
“I am standing…”
(See Resource Section)
ƒ
Distribute evaluations.
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1. HANDOUT
SPIRITUALITY - THE SEARCH FOR MEANING
Understanding what is important to me helps me to
understand how others find meaning:
What gives meaning in your life?
What would continue to give meaning if you were faced with a terminal
illness?
How do you care for yourself spiritually?
Adapted from an exercise of Carol Mc Keen Cape Breton District Health Authority
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2. TRANSPARENCY/HANDOUT
SPIRITUALITY
Workshop Goals
To examine spiritual needs of the dying person;
To have participants examine their own comfort
with the spiritual needs of the dying person;
To give guidance to participants for use in their
interactions around spiritual issues with people who
are dying.
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3. TRANSPARENCY /HANDOUT
SPIRITUAL NEEDS
▪ Spiritual support may help some people make
sense of their illness and give them the strength
to continue.
▪ There are many different religions. Each religion
has its own spiritual beliefs, practices, myths,
rites and symbols.
▪ Religious beliefs are highly personal and vary
among individuals.
▪ It is important to respect other people’s religion
and not impose one’s own religious beliefs on
others.
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4. TRANSPARENCY/HANDOUT
GUIDELINES FOR SPIRITUAL SUPPORT
ƒ Respecting the beliefs of the client and/or family
members.
ƒ Responding to the client’s and/or family member’s
spiritual needs according to their belief system
(and not your own).
ƒ Sharing personal beliefs only if asked by the client
and/or family member.
ƒ Providing whatever a client and/or family member
requests in terms of spiritual support including
contacting, or not contacting, their faith leader in
the community, if so requested.
ƒ Never, never proselytize or trying to convert a
client and/or family member.
Hospice Association of Ontario: Visiting Volunteer Training Manual, 2002.
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5. TRANSPARENCY/HANDOUT
DEFINITIONS:
SPIRITUALITY – The energy within each
person that looks for meaning and purpose in life.
RELIGION – An expression of spirituality
through formal and informal means. A practice
of sacred rites.
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6. HANDOUT
AN ETHICAL WILL:
Write an Ethical Will.
1. Decide how you want to sum up the significant aspects of your life at this point in time.
2. To whom do you want to leave essential aspects of yourself?
3. What can you say about yourself in the following dimensions?
* spirituality * moral values * emotions * ideas * hopes * concerns * fears
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EVALUATION
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EVALUATION
Module IV
Spiritual Issues
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
SPIRITUAL ISSUES
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DISCUSSION QUESTIONS
Thinking about yourself at present, what gives your life meaning? What
makes life worth living for you?
What are the beliefs or values that are most important in guiding your
own life?
List ten descriptions or adjectives that define the real you/the unique
you.
What spiritual resources do you bring to your work in hospice palliative
care?
(e.g. – from your religious background, spiritual experiences, insights
from your own suffering or grief).
Source – Reverend Gary Myatt, QEII Joint Volunteer Training HRM.
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Death & Dying Issues Related to Religious Belief
Religion
Buddhism
Philosophy/Beliefs
-
Hinduism
-
-
-
Seeks “truth” through middle
way between extremes of
asceticism and self-indulgence.
“Right” living will enable
people to attain nirvana.
Reincarnation of soul.
Emphasis on meditation to relax
mind and body to see life in true
perspective.
A wide variety of beliefs held
together by an attitude of mutual
tolerance – all approaches to
God are valid.
Goal is to break free of
imperfect world and to reunite
with Brahman (i.e. everything
physical, spiritual and
conceptual.)
Reincarnation and
transmigration of soul until
reunion with Brahman.
Killing of living things
outlawed (vegetarian).
Practices Related to Death
-
-
-
Islam (Muslim)
-
Complete way of life.
Belief in God – all people
created, live, die and return to
God by God’s command.
Death is part of life and a rebirth
into another world.
Pork and intoxicating
substances prohibited.
-
Judaism
-
-
God has a Covenant relationship
with humans and if one obeys
God’s laws, salvation may be
achieved.
Chosen to be examples to all.
“Messiah” will come to bring
world to perfection.
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Quietness and privacy for
meditation important.
Goal at death for mind to be
calm, hopeful and as clear as
possible. (May thus be reluctant
to use medications.)
No special rituals regarding
body.
Cremation common.
Married women wear a nuptial
thread and red mark on the
forehead; males may wear a
sacred thread around the arm;
dying patient wearing neck/arm
thread may indicate special
blessing – none of these
symbols should be removed.
Readings from Bhjagavad Gita
comforts patients.
Important for family to wash
body; eldest son arranges
funeral.
Cremation usual with ashes
scattered on water (preferably
not holy river Ganges).
Set pattern for mourning and
final service two weeks after
death.
Friday is holy day – cleansing
ritual prior to prayer – head
must face towards Mecca.
Reading from Koran to the
dying, and patient encouraged to
recite verses.
After death, a spouse or relative
of same sex washes patient’s
body.
Burial soon after death, simple
with no coffin – three days
mourning except a spouse (four
months, 10 days).
Practices at death seek to i)
honor dignity of body, ii) assist
bereaved through process using
laws of the whole mourning
ritual, iii) affirm basic belief
that life and death are part of
God’s plan.
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-
Strong family focus.
-
Sikhism
-
-
Philosophy is combination of
Islam – one God and the basic
ethical beliefs – plus
Hinduism’s world views.
Common God for all mankind
and preach religious tolerance.
-
Christianity
(Catholic, Protestant, Eastern
Orthodox)
-
Founded on teachings of Jesus
Christ.
World and everything that exists
was created and depends on
God.
Belief in afterlife and soul
integral to faith.
-
Burial takes place 24 – 48 hours
after death – body must be left
unattended from death until
burial.
Family receives visitors and
food gifts during seven-day
SHIVA.
30 days social withdrawal with
one year official mourning.
Specific services of
remembrance after death and at
unveiling of tombstone.
Five traditional symbols which
could cause distress if removed
from dying person:
Kesh – long uncut hair of face
and head.
Kanga – hair comb (symbol of
discipline).
Kara – steel bangle on wrist
(strength and unity).
Kirpan – sword, worn as broach
(authority and justice).
Kachha – special shorts
(spiritual freedom).
Cremation with ashes scattered
on water.
Staff may prepare body.
Mourning services last ten days
and final service marks end of
official mourning.
After death there is a two to
three day visitation to home
(funeral home) prior to funeral.
Funeral/memorial service to
celebrate life of decreased and
departure of soul to afterlife.
Burial or cremation occurs after
funeral service.
Source Unknown
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I Am Standing….
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean. She is an object of beauty and strength; I stand and watch her until
at length she hangs like a speck of white cloud just where the sea and sky come to mingle with
each other
Then someone at my side says: "There, she is gone!"
"Gone where?"
Gone from my sight. That is all. She is just as large in mast and hull and spar as she
was when she left my side and she is just as able to bear her load of living freight to
her destined port.
Her diminished size is in me, not in her and just at the moment when someone at my
side says: "There, she is gone!" there are other eyes watching her coming, and other
voices ready to take up the glad shout: "Here she comes!"
And that is dying.
Anonymous
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A Grief Observed: No-one ever told me that grief felt so like fear I am not afraid but the
sensation is like being afraid - the same fluttering in the stomach - the same restlessness,
the yawning. I keep on swallowing. - C.S. Lewis
Man's Search for Meaning: The human spirit is most resilient - We can live through most
anything. - Victor Frankl
“To suffer alone is to suffer most.” - Jewish Proverb
Do not go gentle into that good night,
Old age should burn and rave at close of day:
Rage, rage against the dying of the light. - Dylan Thomas
Helen Hayes, the famous actress, makes an interesting observation about her own reaction
to the loss of-her husband. “I was as crazy as one can be and still be at large.”
A letter written to a dear friend upon the anniversary of the death of his
daughter. - We find a place for what we lose. Although we know that the
acute phase of mourning will subside, we also know that we shall remain
inconsolable and will never find a substitute - no matter what may fill
the gap, even if it is filled completely, it nevertheless remains something
else. - Freud
Dear God,
What is it like when you
die? Nobody will tell me
I just want to know.
I don't want to do it.
Your friend, Mike
When it comes to death, we are all children. - Emerson
We cannot prevent suffering but we can see that it is not for the wrong reasons.
A joy shared is a joy doubled - a grief shared is a grief halved.
Life is a series of tragic losses - but you can't lose something unless you have first had it,
so that the magnitude of each loss becomes the measure of life's gifts.
In an era of constantly advancing medical and scientific technologies, we have no miracle
cure to remedy the sorrowing heart - only the most old-fashioned of resources: human
understanding.
Author Unknown
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Please Hear What I’m Not Saying
Don’t be fooled by me. Don’t be fooled by the face I wear. For I wear a mask. I wear a thousand masks,
masks that I’m afraid to take off, and none of them are me.
Pretending is an art that is second nature with me, but don’t be fooled. Please. Don’t be fooled.
I give you the impression that I’m secure, that all is sunny and unruffled with me, within as well as
without; that confidence is my name and coolness is my game; that the waters are calm and that I’m in
command and I need no one. But don’t believe me; please don’t believe me.
My surface may seem smooth; but my surface is my mask, my ever-varying and ever-concealing mask.
Beneath it lies no smugness, no coolness, no complacence. Beneath dwells the real me, in confusion, in
fear, in loneliness. But I hide this: I don’t want anybody to know it. I panic at the thought of my
weakness being exposed. That’s why I frantically create a mask to hide behind, a nonchalant
sophisticated façade to help me pretend, to shield me from the glance that knows. But such a glance is
precisely my salvation. My only salvation. And I know it. It’s the only thing that can liberate me from
myself, from my own self-built prison walls, from the barriers that I so painstakingly erect. But I don’t
tell you this. I don’t dare. I’m afraid to.
I’m afraid your glance will not be followed by love and acceptance. I’m afraid that you will think less of
me, that you’ll laugh, and your laugh will kill me. I’m afraid that deep down inside I’m nothing, that I’m
just no good, and that you’ll see the real me and reject me.
So I play games, my desperate, pretending games, with a façade of assurance on the outside and a
trembling child within. And so begins the parade of masks, the glittering but empty parade of masks.
And my life becomes a front.
I idly chatter with you in the suave tones of surface talk. I tell you everything that’s really nothing,
nothing of what’s crying within me. So when I’m going through my routine don’t be fooled by what I’m
saying. Please listen carefully and try to hear what I’m NOT saying: what I’d like to be able to say; what,
for survival, I need to say but can’t say. I dislike the hiding. Honestly I do. I dislike the superficial
phony games I’m playing.
I’d really like to be genuine, spontaneous, and me; but you have to help me. You have to help me by
holding out your hand, even when that’s the last thing I seem to want or need. Each time you are kind
and gentle and encouraging, each time you try to understand because you really care, my heart begins to
grow wings. Very small wings. Very feeble wings. But wings. With your sensitivity and empathy and
your power of understanding, I can make it. You can breathe life into me. It will not be easy for you. A
long conviction of worthlessness builds strong walls. But love is stronger than strong walls, and therein
lies my hope. Please try to beat down those walls with firm hands, but with gentle hands, for a child is
very sensitive, and I AM a child.
Who am I, you may wonder?
I am someone you know very well. For I am every man, every woman, every child….every human you
will ever meet.
Source Unknown
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1. PERSONAL THOUGHTS ON DEATH AND DYING - (handout)
A. What is it that you fear most about dying?
B. If you could choose the manner of your death, how would it be? Give reasons for your
choices.
C. If you had a terminal illness, would you want to know? Who would you tell? Why?
D. If you knew you had only one week to live, what would you do with this remaining time?
E. If you were to die today, what would you say has been your greatest accomplishment? Your
greatest regret?
F. What would be the most frightening way to die?
G. What does death or dying mean to you?
H. Try to remember your first experience with death. Who or what was it that died? How did you
feel at the time? How do you feel about it now?
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IN A HOSPITAL ELEVATOR
Going Up
What am I going to say, Lord?
He's dying.
But the family doesn't want him to know.
In fact, the family won't face it.
Shall I be cheerful? Or solemn
Either way,
I'd be self-conscious. And that's no good.
Do I play games, pretend that he'll get well?
What would you do, Lord?
Maybe I should pray with him. After all, he's a Christian, Lord?
But would praying together make him think that I thought he was dying?
I wish I knew
What to do, Lord.
Excuse me – this is my floor.
Going Down
Well, Lord, that was a surprise.
I hardly said a word.
It was he
who did the talking. The smile on his pale face almost broke me up.
He seemed so glad to see me, and he held my hand so tight.
How concerned he was about his family
At a time like that!
It made me feel pretty small.
When he said he knew
he wouldn't leave that room alive,
I actually felt relieved.
When he said he wasn't afraid, had no regrets,
I could have cried.
And when we prayed together, I was convinced,
as he already was, that death is nothing to be feared.
So why was I worried about visiting him?
Didn't I know all along. That you would be there, Lord?
- Robert J. McMullen Jr., Charlotte, North Carolina
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IN THE SERVICE OF LIFE
By Rachel Naomi Remen
In recent years, the question "How can I help?" has become meaningful to many people. But
perhaps there is a deeper question we might consider. Perhaps the real question is not "How
can I help?" but "How can I serve?"
Serving is different from helping. Helping is based on inequality; it is not a relationship between
equals. When you help, you use your own strength to help those of lesser strength. If I'm attentive
to what's going on inside of me when I'm helping, I find that I'm always helping someone who's
not as strong as I am, who is needier than I am. People feel this inequality. When we help, we may
inadvertently take away from people more than we could ever give them; we may diminish their
self-esteem, their sense of worth, integrity and wholeness. When I help, I am very aware of my
own strength. But we don't serve with our strength, we serve with ourselves. We draw from all of
our experiences. Our limitations serve, our wounds serve, even our darkness can serve. The
wholeness in us serves the wholeness in others and the wholeness of life. The wholeness in you is
the same as the wholeness in me. Service is a relationship between equals.
Healing incurs debt. When you help someone, they owe you one. But serving, like healing, is
mutual. There is no debt. I am as served as the person I am serving. When I help, I have a
feeling of satisfaction. When I serve, I have a feeling of gratitude. These are very different
things.
Serving is also different than fixing. When I fix a person, I perceive them as broken and
their brokenness requires me to act. When I fix, I do not see the wholeness in the other
person or trust the integrity of the life in them. When I serve, I see and trust that wholeness.
It is what I am responding to and collaborating with.
There is a distance between ourselves and whatever or whomever we are fixing. Fixing is a form of
judgment. All judgment creates distance, a disconnection, an experience of difference. In fixing,
there is an inequality of expertise that can easily become a moral distance. We cannot serve at a
distance. We can only serve that to which we are profoundly connected, that which we are
willing to touch. This is Mother Teresa's basic measure. We serve life not because it is broken but
because it is holy.
If helping is an experience of strength, fixing is an experience of mastery and expertise. Service,
on the other hand, is an experience of mystery, surrender and awe. A fixer has the illusion of
being casual. A server knows that he or she is being used and has a willingness to be used in the
service of something greater, something essentially unknown. Fixing and helping are very
personal; they are very particular, concrete and specific. We fix and help many different things in
our lifetimes but when we serve, we are always serving the same thing. Everyone who has ever
served through the history of time serves the same thing. We are servers of the wholeness and
mystery of life.
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The bottom line, of course, is that we can fix without serving. And we can help without serving.
And we can serve without fixing or helping. I think I would go so far as to say that fixing and
helping may often be the work of the ego and service the work of the soul. They may look
similar if you're watching from the outside, but the inner experience is different. The outcome is
often different too.
Our service serves us as well as others. That which uses us strengthens us. Over time, fixing and
helping are draining, depleting. Over time, we burn out. Service is renewing. When we serve, our
work itself will sustain us.
Service rests on the basic premise that the nature of life is sacred, that life is a holy mystery,
which has an unknown purpose. When we serve, we know that we belong to life and
to that purpose. Fundamentally, helping, fixing and service are ways of seeing life.
When you help, you see life as weak; when you fix, you see life as broken; when you
sever, you see life as whole. From the perspective of service, we are all connected.
All suffering is like my suffering and all joy is like my joy. The impulse to serve
emerges naturally and inevitably from this way of seeing.
Lastly, fixing and helping are the basis of curing but not of healing. In 40 years of chronic
illness, I have been helped by many people and fixed by a great many others who did not
recognize my wholeness. All that fixing and helping left me wounded in some important and
fundamental ways. Only service heals.
R. N. Remen is Medical Director & Cofounder of the Commonwealth Cancer Help Program,
Bolinas. California. She is Assistant Clinical Professor of Family & Community Medicine.
University of California. San Francisco. School of Medicine.
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Looking Inward
Your Background Related to Death
1. What was your first encounter with death? Recall your feelings and
needs at the time. How did others respond to those feelings and needs?
What is your most vivid image associated with this first loss
experience?
2. How was the topic of death dealt with in your family? Was it ignored?
Was it considered taboo? Was it discussed openly and matter-offactly?
3. Can you remember the first funeral that you attended? How were you
prepared for this experience? What do you remember about it? What
feelings did you have? How was the funeral and your response
influenced by religion and culture?
4. What significant losses have you had? Which one was the most painful
and why? In what ways has this affected your life? In what ways, if
any, has this affected the way you do therapy?
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Care for the Spirit
When we speak of "care for the spirit", we are referring to needs and opportunities in an area that is
hard to talk about. "Spirit", "soul", or "life force" are terms we use to try to capture something of our
deeper natures. Religious belief and practice, or a philosophy of life, may represent the way to the spirit
for some. Others may not have a formalized way that captures their own sense of their essential self, or
"what it is that is really me".
Living with a final illness may bring a time of self-searching and self-assessment. Many things are
changing for the dying person. As they move through their illness, it will be important for them to try to
make sense of what is happening. This may challenge their beliefs and what has previously given
meaning to their lives. The purpose now is letting go.
In this turmoil, are there ways to work toward completion, forgiveness, love and peace? Are there ways
to accept the times when such fulfillment does not occur? People may seek forgiveness from others or
from God, or offer it to those who have hurt them. They may offer thanks and appreciation for what
they have been given, and acknowledge their debts. The work that people do in considering the "big"
questions of life, finding value and meaning in their life experiences, and acknowledging their strengths
and weaknesses can lead to a period of acceptance.
This process may occur through quiet thought, meditation or prayer, or through dialogue with others.
The following guidelines are points for you to consider when supporting your clients and their families
as they explore issues of the spirit.
Guidelines for HSW
ƒ
Be respectful of each person's individuality and particular beliefs, faith and values.
ƒ
Stop, look, and listen. Do you have permission; does this person want to share with you in this
area?
ƒ
Pay attention to the environment to give you information about what has been important to your
client. Books, music, photos, diplomas, etc. will provide clues.
ƒ
Notice what behaviours, habits and rituals the client and family practice, such as holding hands,
prayers at mealtimes, meditation, or quiet time.
ƒ
Check your perceptions and ideas with your client; encourage friends and family to be involved in
care for the spirit. If you wish to assist with something or to make a suggestion, ask for permission
to do so.
ƒ
Be creative.
ƒ
Good communication skills will be helpful in this area. Listen carefully. Be comfortable with
sitting in silence.
Victoria Hospice Society
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SPIRITUALITY AND PALLIATIVE CARE
Prepared by Rev. Avery Kempton
Marion Bridge, Nova Scotia
It seems to me that there are three things that need to be addressed as we consider the
spiritual concerns of people who have an incurable illness.
First, we need to look at what we mean by SPIRITUALITY;
Second, we need to look at the relationship of SPIRITUALITY TO HEALTH CARE;
Third, we need to understand the impact of SPIRITUALITY ON PALLIATIVE
CARE.
II. SPIRITUALITY
The word spirituality has recently become a more common reference for anything that involved
religions; or religious belief.
When we talk about Spirituality, we are not talking about a set of external acts. We are talking
about a relationship to life itself.
The aspect of spirituality that has been most helpful for me is the one used by my
teacher and mentor Matthew Fox - he describes it as COMPASSION.
III. SPIRITUALITY AND HEALTH CARE
This leads us to a new understanding of the relationship of spirituality to health. It is a
necessary ingredient to true healing, which implies wholeness--a restoration of a
wholeness, which existed before the onset of illness, or the actualizing of a potential,
which was not there before.
Illness implies that something is amiss; something, which was intended to work, is not
working. Where traditional static religion was expected to simply pacify the situation
by bringing comfort to a sick and dying person, this understanding of spirituality
contributes to healing--to bringing the person back to maximum health.
The skillful use of listening, caring and counseling can help people to be more open to the healing
resources within their own bodies, minds and spirits. This requires that we pay attention to how
people relate to God, people, nature and their own inner being and to what extent they satisfy their
own individual spiritual needs.
Some of these spiritual needs are:
1. Developing a viable philosophy of life
2. Developing images and values that guide their lifestyles
3. Having a growing relationship with a loving God which integrates their lives
4. Renewing their basic trust in order to maintain hope in the midst of the losses
and tragedies of their lives
5. Discovering ways of moving from the alienation of guilt to the reconciliation
of forgiveness
6. Having periodic moments of transcendence/mountain-top experiences
7. Belonging to a caring community
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MODULE V
PAIN AND SYMPTOM MANAGEMENT
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FACILITATOR’S OVERVIEW
Module V
Pain and Symptom Management
General Course Description: Provides the volunteer with some understanding of the dying
person’s experience of pain and how that pain can be managed. Also covered are symptoms,
which a dying person may have as a result of their illness or medication, and how these may be
managed as well. The volunteer will come to understand the role that they can play in helping to
ensure effective pain and symptom management.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
ƒ
ƒ
have a greater awareness of the different components affecting the dying person’s pain
experience;
have learned some practical pain relief techniques;
will be aware of common symptoms/side effects experienced by the terminally ill;
will have some knowledge of symptom control methods;
will have an understanding of the role of the volunteer in pain and symptom control.
Recommended Time Frame: This session is designed to be delivered in three (3) hours,
however, if the video is not used it could be reduced to two and a half (2 ½) hours. Video is an
effective learning tool so it is recommenced that one be used if a suitable one is available. This
session could be combined with the Module on “The Process of Dying” or expanded with some
information on nutrition for the dying.
Process: The facilitator should use a combination of short lectures, demonstrations, group and
small group discussions and an appropriate video.
- The facilitator may also choose to incorporate a discussion on some ethical issues that can
arise around the use of drugs in pain management.
- Sufficient emphasis must also be placed on the volunteer’s role as an observer and advocate
for the client as well as their responsibility to take concerns around pain and symptom
management back to the hospice palliative care team.
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Module V
SESSION OUTLINE AT A GLANCE
Pain and Symptom Management
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
1. Welcome
2. Warm-up Exercise
3. Workshop Goals
The Dying Person’s Experience of Pain
4. The Dying Person and Pain
5. Components of the Pain Experience
6. Identifying Pain in the Cognitively Impaired
7. Total Pain Management
Management of Symptoms
8. Symptom Control
9. Video
10. The Volunteer Role in Pain &
Symptom Control
Handouts/
Transparencies
20
(1) Pain Hurts
(2) Goals
60
(3) Components of the…
(4) Elderly Patient…
(5) Asking Questions…
(6) Signs of Pain
(7) Less Obvious Indicators
(8) Analgesic Step Ladder
30
(9) Symptoms and Their Control
(10) Controlling Pain
Closing
11. Wrap-up Exercise
Time
(mins.)
10
(11) Rhythmic Breathing…
(12) Imagery Exercise
(13) Isometric Exercise
(14) We Must All Die…
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INTRODUCTION TO PAIN AND SYMPTOM
MANAGEMENT
Total Time: 3 hours
and adjusted their expectations
accordingly? Did they get the help they
wanted?
Time Allotment: 20 minutes
1. Welcome
ƒ Welcome participants to the
workshop on "Pain and Symptom
Management."
ƒ Explain that the focus of the
workshop will be on the dying
person's pain experience and the
role of the Volunteer in methods
used to control symptoms, pain
and symptom management.
2. Warm-up Exercise
Use transparency/handout (1) to
emphasize the fact that:
ƒ
Pain hurts
ƒ
The patient knows best about their
pain
ƒ
There are ways to control pain that
work
3. Workshop Goals
Review the goals of the workshop with the
group.
Have participants think about the worst
pain they have ever experienced. Ask them
to rate it on a scale of one to ten.
Use transparency/handout (2).
Goals of the Workshop:
ƒ
Ask participants to share their ratings and
the cause of their pain.
Use the sharing to point out that people’s
response to pain is unique. E.g. childbirth
for one may rank high on the pain rating
and low for another, even if the process of
birth and length of the labour was similar.
Some people will talk about discomfort
rather than pain.
Also ask participants too to think about
other people’s response to their pain. Did
they feel that their family, friends, medical
staff really understood or believed them
ƒ
ƒ
ƒ
ƒ
To increase awareness of the different
components affecting a person's pain
experience;
To learn some principles of pain
relief and total pain management;
Identify common symptoms/side
effects experienced by the
terminally ill;
To identify issues around pain
management for the cognitively
impaired;
To examine the role of the volunteer in
the interdisciplinary teams
responsibility for pain and symptom
management.
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THE DYING PERSON’S EXPERIENCE OF PAIN
Time Allotment: 60 minutes
4 Lecture: The dying person and
pain
ƒ
Present the lecture; highlighting
important ideas listed below and
other content that you have
chosen.
Pain is a physical sensation that is relayed
to the brain through the nervous system.
As conveyed in the warm up exercise, pain
is a subjective experience. Two people
experiencing the same type of pain will
react differently. For example, one
person's headache will force him or her to
bed while another person will continue to
work.
Acute pain and chronic pain are two very
different kinds of pain. The physiology
of pain is different as well and the
patients may describe the pain
differently.
Question for the group: What are some of
the words and phrases people use to
describe pain.
ƒ
Aching
ƒ
Gnawing
ƒ
Squeezing
ƒ
Penetrating
ƒ
Burning
ƒ
Pins and needles
ƒ
Sharp
ƒ
Stabbing
ƒ
Shooting
ƒ
Electrical feel
Ask participants to sort the list of
descriptors for those typical of acute and
chronic pain.
Volunteers can help the person in pain by
believing them and informing the
palliative care team about changes in the
client’s behavior which may indicate a
change in the level of pain the person is
experiencing.
5. Lecture – Components of the
Pain Experience
Review transparency/handout (3).
Other information to include in the lecture:
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
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THE DYING PERSON’S EXPERIENCE OF PAIN
6. Lecture: Identifying Pain in the
Cognitively Impaired
ƒ
Highlight the important points
presented below and other contents
that you may have chosen:
Many volunteers will be working in a longterm care setting with clients who may or
may not be cognitively impaired. If they
are, the issue of identifying the level of pain
experienced by the client and how to control
it may be difficult.
Review transparency/handout (6)
and (7) to illustrate types of behavior
volunteers may look for.
Some behaviors, which are seen as part of
dementia, may instead be an indication of
pain.
REMEMBER THAT IN LONG TERM
CARE 90% OF PEOPLE DIE WITHOUT
PAIN!
It should be noted that even if clients are
cognitively impaired they may still be able
to give reliable reports of their own pain.
There may be some misunderstanding by the
elderly and their caregivers around pain.
Review transparency/handout (4)
with the participants.
Volunteers who suspect that their cognitive
impaired client is suffering pain can assist
the hospice palliative care team by asking
simple questions of their client and reporting
responses to the appropriate team member.
Review transparency/handout (5) to
suggest simple questions.
Also, pain in the cognitively impaired can
be identified by observing changes in the
client’s behavior.
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TOTAL PAIN MANAGEMENT
7. Lecture: Total Pain
Management
ƒ
Lecture – Highlight the important
ideas listed below and other content
that you have chosen.
Question for the group: From your
experience, what often helps relieve pain?
Total pain management is part of the dying
person’s care plan.
It is the most important aspect of hospice
palliative care.
Question for the group: Ask participants if
they have any concerns about the use of
drugs in palliative care.
Mythology around addiction and opiate
use.
There are myths about strong drugs such as
Morphine. Two of these are:
ƒ
When you are put on Morphine you are
going to die.
ƒ
When you are put on Morphine you
will become addicted and need
increasingly high dosages.
In the hospice palliative care setting the pain
management strategy is first to assess the
clients level of pain. (Refer back to pain
level scale from Warm up). The response is
based on the assessed level of pain in what
is known as the Analgesic Step-Ladder.
Putting patients on Morphine, or similar
opiates, is not a precursor to immediate
death. Also giving drugs for pain does not
cause addiction. Studies have shown that a
dying person can get pain relief by taking
Morphine every four hours for up to a year
without having to increase dosage.
Review transparency/handout (8) to
explain.
Ethical Alert: Some people may
have ethical concerns around drug use.
!
Total pain management is not only based on
assessing pain level and deciding on
medication and dosage, but also in setting up
a schedule for administration of medication
which will help the client remain pain free.
You could discuss in the context of four
main ethical principles: respect for
autonomy; non-maleficence, beneficence
and justice.
Sometimes the client’s pain will “break
through” between regularly scheduled
medications. Volunteers should be alerted
to this with their client and inform staff
when this occurs.
BREAK
For this purpose the “Breakthrough Doses”
are prescribed for palliative care patients.
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MANAGEMENT OF SYMPTOMS
Time Allotment: 60 minutes
8. Lecture - Symptom control
ƒ
Present the lecture; highlighting
important ideas listed below and
other content that you have chosen.
Terminally ill people may experience
uncomfortable symptoms caused by their
illness or medication.
Question for the group: What are some of
the common symptoms which may be
experienced by your clients?
Review transparency/handout (9) to
highlight systems and ways of controlling
them.
Some people will experience a few
symptoms, while others may experience
many, and some none at all.
Careful attention to the person's care plan
is necessary. The care plan will outline
how the symptoms should be controlled. It
is the volunteer’s responsibility to be
aware of the care plan. If unsure about a
symptom, the volunteer must contact his
or her supervisor for further direction.
It will be important for the care team to
know which symptoms are caused by the
disease and which by the medication.
Other information to include in the lecture:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
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MANAGEMENT OF SYMPTOMS
Optional
9. Video and Discussion
The purpose of using a video is to examine
the issue of pain and communication with
someone who is in pain.
-
Items required for exercise:
Video cassette player
Television
An appropriate video
ƒ
Begin by introducing the video and
what the participants should be
looking for in relationship to pain
management.
ƒ
Ask participants to put themselves in
the caregiver’s position. How would
they feel and react in a similar
situation?
ƒ
Start the video and pause for
discussion when appropriate.
10. Lecture: The Volunteer Role in
Pain and Symptom Control
-
Highlight the important issues and add
other content (especially as it relates to
your local program).
Volunteers can’t do much to help clients
cope with pain and the symptoms of their
disease and/or medication.
Review transparency/handout (10)
and relate to transparency/handout (9) -so
areas where volunteer’s responsibilities as
opposed to staff responsibilities may be
described and underlined.
Possible Discussion Questions:
- How is the client feeling?
- What is the client saying to the
caregivers?
- How would you respond to this client?
- How would you handle this situation?
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CLOSING
Time Allotment: 25 minutes
11. Wrap-up Exercise (Optional)
The purpose of this exercise is to enable
participants to practice relaxation
techniques for pain control.
Distribute handouts (11), (12) and (13).
Ask participants to get together in pairs.
ƒ
Ask each person to choose a pain
control exercise and practice it on their
partner.
ƒ
At the conclusion of the exercise ask
participants to share with the group
their experience (i.e. what was it like
talking someone through an imagery
exercise? How did it make them feel?
Were they comfortable? Or how did it
feel to be the person doing the
relaxation exercise? Did they feel
relaxed?).
Discuss what participants have
learned from the session. Use the
quote from Albert Schweitzer
(transparency 14) to reinforce what
was learned in the session.
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1. TRANSPARENCY/HANDOUT
Pain Hurts
Believe the Patient
Respond
To
Control Pain
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2. TRANSPARENCY/HANDOUT
PAIN AND SYMPTOM CONTROL
WORKSHOP GOALS:
ƒ To increase awareness of the different components
affecting the dying person's pain experience;
ƒ To learn some principles of total pain management;
ƒ To identify issues around pain management for the
cognitively impaired;
ƒ To identify common symptoms/side effects experienced
by the terminally ill;
ƒ To discuss symptom control methods;
ƒ To examine the role of the volunteer in the
interdisciplinary team’s responsibility for pain and
symptom management.
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3. TRANSPARENCY/HANDOUT
COMPONENTS OF THE PAIN EXPERIENCE
Cultural Background
Gender
Meaning of Pain
Life Experiences
√
√
√
√
Individuals will react to
pain in the manner which
they have learned as
acceptable within their
group.
√
If family values "stoicism",
the person will be silent.
√
If family values
expressiveness, the person
may cry and moan.
A society's attitudes can
influence the way a male
should respond and react to
pain versus how a female
should respond and react to
pain.
√
A woman may be allowed
to cry.
√
Men are expected to not
cry.
Pain is determined by the
interpretation of what the
pain means to the person.
√
Some people may interpret
pain as a punishment for
past sins.
√
Some people do not see
pain as evil or negative, but
as part of life.
√
A person who has suffered
from chronic migraines for
example will respond to
pain in terminal illness
differently than someone
who has never suffered.
An individual's previous
experiences with pain will
influence how they respond
to pain.
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4. HANDOUT
Elderly patients and caregivers may misunderstand pain.
Common Pain Misconceptions
…among elderly patients
Pain is unavoidable.
Pain is a punishment.
…among caregivers
Elderly patients have decreased sensations
of pain.
Elderly patients who are cognitively
impaired don’t feel pain.
A sleeping patient is not in pain.
Asking for pain medication is too
demanding and means I’m not being a “good
patient”.
Pain medications are addictive.
Elderly patients complain more about pain
as they age.
Pain medications have bad side effects.
Elderly patients who ask for pain meds have
a low pain tolerance.
Taking pain medications means I’ll lose my The elderly can’t tolerate pain medication or
independence and mental clarity.
manage patient-controlled analgesia.
Nurses don’t have the time to give extra
Narcotics will hasten death.
medications.
Pain is not harmful.
Potent analgesics are additive.
Complaining of pain means I’ll have to go
Potent pain meds will cause respiratory
for a lot of tests.
depression.
There’s no way I can afford to pay for more
medication.
This study was done with the elderly and their nurses.
Adapted From: “ProperlyAssessing Pain in the Elderly” RN Vol. 64#5 May 2001.
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5. TRANSPARENCY/HANDOUT
Asking questions of cognitively impaired clients:
ƒ Keep them simple
ƒ Stick to here and now
ƒ Use terms which may express the various ways pain is
experienced , e.g.:
- Do you feel any burning sensations?
- Do you feel any aches
- Do you feel any soreness
ƒ Maintain eye contact
ƒ Speak in a calm manner
ƒ Avoid taking the client’s personal space
ƒ Repeat questions using same words
ƒ BE PATIENT
Adapted From: “Properly Assessing Pain in the Elderly” RN Vol 64#5 May 2001
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6. TRANSPARENCY/HANDOUT
THE SIGNS OF PAIN
Some people may feel pain but deny it or not be able
to express it. It is important to look for signs of pain:
(1) General body tension: clenched hands, hunched
(2)
(3)
(4)
(5)
(6)
(7)
(8)
shoulders
Tense facial expressions – frowning/grimacing
Constant fidgeting
Nervous habits: lip and nail biting
Unexplained withdrawal
Strained or high-pitched tone of voice
Crying or moaning
Agitation or aggressive behavior
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7. HANDOUT
The less obvious indicators of pain in the cognitively
impaired:
Less – Obvious Indicators
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Facial expressions: slight frown, sad or
frightened expression, rapid eye blinking.
Vocalizations: noisy breathing, chanting,
calling out, verbally abusive language,
profanity.
Body movements: fidgeting, agitation,
restlessness, increased pacing or rocking,
gait changes.
Interpersonal interaction changes:
resisting care, disruptive behavior,
withdrawn behavior.
Activity pattern changes: refusing food,
more frequent or lengthier rest periods,
difficulty sleeping, sudden cession of
normal routines.
Mental status change: increased
confusion, irritability, crying.
Source: The management of persistant pain in older
persons, J Am Geriatr Soc 2002:50(6 Suppl):5205-24.
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8. TRANSPARENCY /HANDOUT
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9. TRANSPARENCY/HANDOUT
Symptoms and their Control
SYMPTOMS
HELPFUL HINTS
ANOREXIA:
(the lack of appetite for food)
-
Serve favorite foods, in small portions
-
Ensure comfortable environment
-
Provide companionship during meals
-
Do not “nag”
WEAKNESS
-
Plan activity and exercise when tolerated
THIRST
-
Provide mouth care, frequent small sips of
fluid, ice chips to suck on
FEVER
-
Apply cold compresses
-
Keep room well ventilated
JAUNDICE
(yellowish skin and membranes)
-
Listen and provide reassurance to person
and the family
NAUSEA/VOMITING
-
Clean-up the vomit and the person
-
Ventilate and deodorize the room
-
Rinse and clean the person’s mouth
-
Increase fluid intake
-
Add bran, prunes or prune juice to the diet
-
Encourage exercise
-
Request laxative such as Milk of Magnesia
-
Plan relaxing night time activities such as
reading, or watching television
-
Report contributing factors such as pain,
incontinence, or caffeine consumption
HICCUPS
-
Elevate the person’s head with pillows to
decrease exertion used to breathe
SKIN IRRITATION
-
Ensure proper body alignment
-
Turn person frequently
-
Keep skin dry and clean
-
Massage skin gently
CONSTIPATION
INSOMNIA
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10. TRANSPARENCY/HANDOUT
CONTROLLING PAIN
Distraction
Distraction puts the dying
person's attention elsewhere, not
on pain.
The following can be good ways
to get the person's mind off the
pain:
√ Television
√ Games
√ Hobbies
√ Music
√ Good conversation
Relaxation
Relaxation methods ease muscle
tension in the body and help
reduce signs of stress such as
fatigue, anxiety, and
sleeplessness.
The following can produce a
calming effect:
√ Rhythmic breathing
√ Isometric exercises
Imagery
Imagery uses the power of
imagination to create pleasant
mental pictures that distract
pain. It is also a good stress
reducer.
√
Visualizations
√
Meditation*
Skin Stimulation
Skin stimulation is a good way
to help people relax, keep the
skin in shape and provide a way
for the dying person to be
touched and comforted.
√ Stimulate the skin with
gentle massage - use steady,
slow, circular motions.
√ Warm baths**
* Volunteers and/or clients may not feel comfortable with meditation.
**Volunteers will not be involved in personal care of client, but may suggest it to appropriate staff
and other caregivers.
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11. HANDOUT
RHYTHMIC BREATHING EXERCISE
Step 1:
Stare at an object, or close your eyes and concentrate on your breathing or on a
peaceful scene.
Step 2:
Take a slow, deep breath and, as you breath in, tense your muscles (such as your
arms).
Step 3:
As you breathe out, relax and feel the tension draining.
Step 4:
Now, remain relaxed and begin breathing slowly and comfortably, concentrating
on your breathing, taking about six to nine breaths a minute. Do not breathe too
deeply.
Step 5:
To maintain a slow, even rhythm as you breathe out, you can say silently to
yourself, "In one, two; Out one, two." It may be helpful at first if someone
counts out loud for you. If you ever feel out of breathe, take a deep breathe and
then continue the slow breathing exercise. Each time you breathe out, feel
yourself relaxing and going limp. If some muscles are not relaxed, such as
your shoulders, tense them as you breathe in and relax them as you breathe
out. You should only need to do this once for each specific muscle.
Step 6:
Continue slow, rhythmic breathing for a few seconds up to ten minutes
depending on your need.
Step 7:
To end your slow rhythmic breathing, count silently and slowly from one to
three. Breathe in deeply at the count of three. Open your eyes. Say silently to
yourself: "I feel alert and relaxed". Begin moving slowly.
From "Radiation Therapy and You", Canadian Cancer Society
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12. HANDOUT
IMAGERY EXERCISE
The ball of healing energy
Step 1:
Close your eyes. Breathe slowly and feel yourself relax.
Step 2:
Concentrate on your breathing. Breathe slowly and comfortably from your
abdomen. As you breathe in, say silently and slowly to yourself "In one, two"
and "Out one, two". Breathe in this slow rhythm for a few minutes.
Step 3:
Imagine a ball of healing energy, perhaps a white light, forming somewhere in
your body. Imagine it taking shape.
Step 4:
When you are ready, imagine that the air you breathe in blows this healing ball
of energy to any part of your body where you feel pain and discomfort.
Step 5:
Continue to breathe naturally and when you breathe out, picture the air moving
the ball away from the body, taking with it the pain or discomfort and tension.
Step 6:
Continue to picture the ball moving toward you and away each time you breathe
in and out.
Step 7:
Imagine the ball gets bigger and bigger as it takes more and more discomfort
and tension away.
Step 8:
When you are ready to end the imagery, count slowly to three, breathe in deeply
and open your eyes.
* From "Radiation Therapy and You", Canadian Cancer Society
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13. HANDOUT
ISOMETRIC EXERCISE
Step 1:
Close your eyes. Breathe slowly and relax.
Step 2:
Continue breathing naturally while you tense your toes, hold for ten seconds,
and then release.
Step 3:
Next, tense your feet, hold for ten seconds, then release.
Step 4:
Next, tense the calf muscles, hold for ten, and then release.
Step 5:
Continue this from toe to head and head to toe:
√
Calf muscles
√
√
Thigh muscles
Buttocks
√
√
√
√
√
√
Stomach
Arms
Shoulders
Fingers
Neck
Face
Step 6:
After the process is complete, ask the person to determine if any part of their
body remains tense and if so, concentrate on relaxing that part by tensing once
more.
From "Radiation Therapy and You", Canadian Cancer Society
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14. TRANSPARENCY/HANDOUT
“ We must all die. But that I can save him from
days of torture, that is what I feel as my great
and ever new privilege. Pain is a more terrible
lord of mankind than even death itself.”
- Albert Schweitzer, 1931
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EVALUATION
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EVALUATION
Module V
Pain and Symptom Management
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
PAIN AND SYMPTOM MANAGEMENT
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MODULE VI
THE PROCESS OF DYING
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FACILITATOR’S OVERVIEW
Module VI
The Process of Dying
General Course Description: Provides the volunteer with an understanding of the final days of
a person’s life and what will happen. It will help them to understand what their role can be at that
stage and what policies and procedures exist in their own organization around that involvement.
Learning Objectives: At the end of the session the participant will:
ƒ
ƒ
ƒ
ƒ
Have knowledge of what to expect in the last few days and hour of a person’s life;
Know what are the signs of approaching death;
Know what their role should be with the client whether he/she is dying in an institution or at
home;
Understand the organizational policies and procedures, which proscribe and support their
involvement in the final days of their client’s life.
Recommended Time Frame: This session is designed to be delivered in three (3) hours but can
be modified by the facilitator to the specific needs of the volunteers in the local volunteer
program. Because it is mainly presented in small lecture format, the facilitator can lengthen or
shorten the session as need be. If it is combined with the “Pain and Symptom Management
Module”, some of the discussion can be condensed or woven into parts of the earlier session. The
section on home deaths will be irrelevant to the volunteer who is dealing with clients only in the
institutional setting.
Process: The facilitator(s) should use a combination of lecture, individual and group exercises
and case studies.
ƒ The facilitator(s) should be very familiar with the role of the volunteer and their own
organizational policies and procedures which will govern them at this last stage of the
client’s life.
ƒ The participants should be given sufficient opportunity to deal with any issues or concerns
which they may have about their role with the client or the client’s family at this time.
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Module VI
SESSION OUTLINE AT A GLANCE
The Process of Dying
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
7. Welcome
8. Warm-up Exercise
9. Workshop Goals
The Process of Dying
10. Lecture
11. Lecture
12. Policy Exercise
Handouts/
Transparencies
Time
(mins.)
30
(1) Warm-up
(2) Workshop Goals
(2a) Facilitator’s Guide
60
(3) Observing Client
(4) Reporting Policy
BREAK
The Final Hours of Care
7. Brainstorm Exercise
8. Lecture
9. Case Study Exercise
10. Policy Exercise (Optional)
75
(5) Signs of Approaching Death
(6) Case Study
(7) When Death Occurs
(8) Home Death Policy
Closing
10
11. Wrap-up Exercise
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INTRODUCTION TO THE PROCESS OF DYING
Total Time: 2 hours
3. Warm-up Exercise
ƒ
Time Allotment: 30 minutes
1. Welcome
ƒ
Welcome participants to the workshop
on the process of dying.
The purpose of this exercise is to
highlight that people have preconceived
ideas about death and what it must be
like. This exercise has been designed to
dispute some of the common myths
about dying and death.
Distribute handout (2)
ƒ
Explain that the focus of the workshop
will be to explore the final days of a
person's life and how to cope with the
situation. Special emphasis will be
given to a person dying at home.
2. Workshop Goals
-
Review the goals of the workshop with
the group.
ƒ
ƒ
ƒ
ƒ
ƒ
Use transparency/handout (1).
Goals of the Workshop:
ƒ
ƒ
ƒ
ƒ
To examine the last few days or
hours of the dying person's life;
To learn about the signs of
approaching death and some
practical suggestions;
To define the volunteer’s role at the
final stage of life;
To discuss organizational policy and
procedures for volunteers to follow
when a death is approaching or
occurs.
ƒ
Ask each participant to complete the
quiz.
After they have completed the quiz,
request participants get together in
small groups of 3 - 5 persons to discuss
his/her responses.
After the discussion, ask the groups
to spontaneously call out answers.
(Refer to teacher's guide (2.a) for
possible responses.)
Inform the participants that each
one of the statements is a myth.
Reiterate that it is important to have a
good understanding of the dying
process in order to be of assistance to
persons in their final hours of living.
End the exercise by indicating that
caring for someone who is dying at
home and being present at the actual
death can be a frightening experience if
one is not prepared. Common questions
that will be examined in this workshop
include: Will the death be painful? Will
it be grotesque? How will I know when
the person is actually dying? What will
happen afterward?
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THE PROCESS OF DYING
Time Allotment: 60 minutes
As death nears, dying persons tend to
withdraw from participating in daily
activities. Most will withdraw into their
bedrooms.
add flowers, play favourite music, control
unpleasant odours (use air fresheners),
maintain general cleanliness and order
according to the client's wishes, surround
the dying person with their favourite items
i.e. photographs, feathered pillow.)
4. Lecture: The dying person
It is important to create a peaceful
environment for the dying person.
-
-
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
In the last stage of a terminal illness
many people will feel sad. However,
some people will face the final stage
with no sadness at all, but look forward
to an afterlife and being reunited with
those that have died before them.
One crucial point is most people will
die as they have lived.
Other information to include in the lecture:
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
Question for the group: What kinds of
things can be done to promote a
comfortable environment? (Possible
responses - break the monotony of the sick
room, face the bed toward the window,
____________________________________________
____________________________________________
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THE PROCESS OF DYING
5. Lecture: Observing client
changes
6. Exercise: Agency reporting
ƒ
The purpose of this exercise is to review
your agency's guidelines for reporting and
the volunteer’s possible role. Each agency
will have its own particular methods and
guidelines for reporting and/or possibly
documenting, and even involving
volunteers. In general, serious signs
should first be reported immediately to the
supervisor. Minor symptoms observed
should also be reported the same day to the
supervisor by the volunteer. When in
doubt about the importance of a particular
observation, it should be reported. It is
always better to err in favour of client
safety and comfort.
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
Noteworthy changes may occur in the
dying person's general physical and
mental abilities, and personality. A
good way to gain information about the
person's status is by direct observation
and questioning the dying person
and/or the family.
Use transparency/handout (3) to
reinforce key points.
It is essential that the volunteer:
1.
2.
3.
4.
Become familiar with the client's
normal physical and mental
functioning;
Note important changes in the
client's sight, hearing, touch and
smell;
Not interpret or judge client
symptoms;
Report important observations.
Please note that volunteers are generally
not involved in the physical care to the
client.
policy
Emphasize that the volunteer role will
vary depending on whether the client is
dying in an institution or at home.
Distribute handout (4).
ƒ
Review your agency's policy
procedures and instruct participants to
take notes.
ƒ
Allow participants to discuss any
concerns or to bring forward questions.
BREAK
Other information to include in lecture:
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THE FINAL HOURS OF CARE
Time Allotment: 75 minutes
7. Brainstorm Exercise: Signs of
approaching death
The purpose of this exercise is to encourage
participants to identify signs of approaching
death and to understand the importance of
observation, and what to do when these
changes have been observed.
ƒ
ƒ
Ask participants to spontaneously call
out answers to the following question.
Record responses on a flip chart.
Brainstorm Question:
From your experience, what are some of
the physical changes that occur and how
do you think you will handle these
changes?
After all ideas have been exhausted,
review handout (5) and emphasize
practical suggestions.
8. Lecture: Last few days or hours
of life
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
Some deaths are sudden, a few are painful
until the very end, but the great majority
of people slip into a state of unawareness.
Most die after being in a coma for several
days or hours.
Some deaths may take a long time, and this
presents a tremendous strain on everyone
involved in the person's care.
Some family members become troubled
toward the end of their relative's life
because they feel they are not doing
enough. Many exhausted family
members, who have watched their loved
one struggle, will long to have the ordeal
over with. The expression of such a desire
creates a lot of guilt. It is important not to
be judgmental of the family's wishes.
Never force a family member to remain
with their relative.
Attending to a person at the moment of
death can be very distressing.
Question for the group:
What do you feel will be the most
distressing part of being with a person at
the point of death? (Possible responses:
not knowing the moment of death,
witnessing the family's grief, body
deterioration, feeling helpless.)
ƒ Allow time for the group to discuss
any feelings, concerns and anxieties.
!
Ethical Alert: This may be an
opportunity to discuss ethical concerns
which may arise at the final stages of
dying. These can include:
Dehydration versus use of IV’s
Total pain management and basic
principles of 24 hour dosing.
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THE FINAL HOURS OF CARE
9. Case Study Exercise
The purpose of this exercise is to enable
participants to imagine the experience of a
home death and to problem solve how they
would cope with this situation.
Distribute handout (6).
ƒ
Ask participants to get together in pairs
or small groups to discuss the case.
After participants have completed
exercise, review handout (7) to
reinforce appropriate procedures.
▪ The purpose of this exercise is to
review your agency's policies and
procedures regarding what to do when a
client dies at home.
10. Exercise: Agency policy on
death at home
Distribute handout (8).
ƒ
Review your agency's policy and
instruct participants to take notes.
The Agency’s procedures when death
occurs:
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
_____________________________________
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CLOSING
Time Allotment: 15 minutes
11. Wrap-up Exercise
ƒ
Ask participants to share one new idea
or piece of information they learned at
this workshop.
ƒ
Allow time for participants to "debrief" and talk about feelings or
experiences with death.
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1. TRANSPARENCY /HANDOUT
THE PROCESS OF DEATH
WORKSHOP GOALS:
ƒ To examine the last few days and hours of the
dying person's life;
ƒ To learn about the signs of approaching death and
some practical suggestions;
ƒ To define the volunteer’s role at the final stages of
life;
ƒ To discuss policy and procedures for volunteers
to follow when death is approaching or occurs.
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2. HANDOUT
WARM-UP EXERCISE
TRUE OR FALSE QUIZ
Directions:
If you think the statement is mostly true, write T
in the space at the left. If you think the statement
is mostly false, write F in the space at the left.
ƒ Death is welcomed by all dying clients.
ƒ A dying person's room should always be kept dark and the
care provider should remain hushed around the client.
ƒ Eyesight is the last sense to be lost.
ƒ Most dying client's are able to breath normally toward the end
of life.
ƒ All dying clients are able to eat until the end.
ƒ As a dying person nears death, the volunteer should
withdraw from his/her involvement with the dying client.
ƒ Just before a person is about to die they will take some
gasping breaths and then just expire.
ƒ It is usually easy to predict the time of death.
ƒ Family members who do not get involved in the care of the
dying person are usually uncaring.
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2(A) FACILITATOR'S GUIDE
WARM-UP EXERCISE
TRUE OR FALSE QUIZ
Death is welcomed by all dying people.
Some people fight for life. They may feel, for example, that they are leaving unfinished
business and that it is not time for them to die. Others have made peace with themselves and
with others and are ready for or even want to die to escape their situation. For people with
strong religious beliefs, death means they will have an afterlife.
A dying person’s room should always be kept dark and the care provider should remain
hushed around the dying person.
It is important to create a peaceful environment, but unless requested darkening the room and
remaining hushed is not necessary. Some people enjoy being around activity and may wish to
be in the living room or den.
Eyesight is the last sense to be lost.
In fact, hearing is the last sense to be lost. It is important to speak to a dying person as if
each word can be heard.
Most dying people are able to breath normally towards the end of life.
Actually, difficulty breathing is quite common at the end of life. The person's breathing
becomes noisy due to mucous collecting in the throat. This is referred to as the "Death
Rattle".
All dying clients are able to eat until the end.
Most, but not all people will stop eating. People stop eating when the disease prevents
swallowing or digesting food, or when they have no energy or desire to force themselves to
eat.
As a dying person nears death, the volunteer should withdraw from his/her
involvement with the dying person.
As death nears, the dying person will withdraw from active participation in daily life.
Consequently, some of the practical activities will no longer be required. However, the
presence of the volunteer and companionship provided may be essential in comforting the
dying person.
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Just before a person is about to die they will take some gasping breaths and then just
expire.
The great majority of people die by slipping into a coma before the moment of death. The
dying person's respiration will slow and become laboured, and there may be pauses
between breaths. When death is near, there may be irregular breathing. Eventually the
number of times and how deeply a person breaths will lessen until the person stops
breathing entirely.
It is usually easy to predict the time of death.
Even when many of the signs of death are present it is not always possible to determine
how much time is left.
Family members who do not get involved in the care of the dying person are usually
uncaring.
Although many stay with their dying family member almost continually, others dread the
actual act of dying and stay away. This does not mean they don't love their family member
but some simply cannot bear to be present.
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3. TRANSPARENCY/HANDOUT
OBSERVING YOUR CLIENT
One of the most important things you can do for
your client is to look and report unusual signs and
symptoms. Learning how to critically observe the
client is one of the most valuable skills that a
volunteer can develop.
In order to become skilled in observation a volunteer
must:
ƒ Become familiar with the client's normal
physical and mental functioning;
ƒ Note important changes in the client's sight,
hearing, touch, smell;
ƒ Do not interpret or judge client symptoms;
ƒ Report important observations.
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4. HANDOUT
AGENCY REPORTING POLICY
Each agency has its own particular methods and guidelines for
reporting. In the space below, record your agency's procedures:
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
____________________________________________________
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5. HANDOUT
SIGNS OF APPROACHING DEATH AND PRACTICAL
SUGGESTIONS
SIGN
ACTION
ƒ
Sight Fails
ƒ
Dying person should be turned on his/her
side toward the light. The room should be
well lit and people in the room should be at
the head of the bed because of the person's
decreasing ability to see.
ƒ
Circulation slows/body temperature drops.
Arms and legs may feel cool, clammy,
damp or appear bluish. Lips and skin may
appear pale.
ƒ
A light blanket will make the person more
comfortable. Do not use an electric blanket.
ƒ
Incontinence. As death nears, urine output
may cease or change colour.
ƒ
Keep the person on a draw sheet with an
under pad.
ƒ
Respiration slows/irregular breathing.
Breathing may become noisy. "Death
Rattle" refers to the sound produced by
mucous collecting in the throat. Loud coarse
bubbling.
ƒ
If possible, prop the person in an upright,
sitting position to allow full expansion of
the chest. Persons with a death rattle should
be turned on their sides unless this is
uncomfortable. A side-lying position allows
the secretions to run out of the mouth.
ƒ
Eating stops. Need for food and drink
decreases or ceases.
ƒ
Keep the mouth moist by giving ice chips,
or if the person is unable to swallow, wipe
the tongue with olive oil. Do not force food
or drink.
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SIGN
ACTION
ƒ
Decreased movement. Sensation and ability
to move will decrease.
ƒ
To prevent pressure on the skin, the person
should be turned frequently; this will also
make him or her more comfortable.
ƒ
Progressive fatigue/lack of energy. Person
will increase amount of time sleeping and
may be difficult to arouse.
ƒ
Stay nearby the person even though the
person may appear unaware. Your presence
will be reassuring.
ƒ
Disorientation. Person may become
confused about time and place or be unable
to recognize close friends and family
members.
ƒ
Frequently mention the time and day and
who is in the room. This will be reassuring.
You may have to repeat yourself a great
deal. If disorientation is causing fearfulness,
it is essential to maintain a calm presence at
the bedside.
ƒ
Restlessness, pulling on linen, having
visions of people or things, can occur.
ƒ
Make sure that someone remains with the
person and provides reassurance. As a
volunteer you can assist other caregivers
with this effort.
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6. HANDOUT
CASE STUDY
Scenario: You have been working with Mr. Jones for the past three
months. He has a serious illness and is not expected to live long.
While his wife, Mrs. Jones, is out shopping, Mr. Jones dies. You enter
his room with a glass of water to find that he is not breathing, his eyes
are open and his skin colour is blue.
What is your first reaction?
How would you handle this situation? What do you say to Mrs. Jones
when she arrives home?
_____________________________________________________
_____________________________________________________
_____________________________________________________
_____________________________________________________
_____________________________________________________
_____________________________________________________
_____________________________________________________
_____________________________________________________
_____________________________________________________
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7. HANDOUT
WHAT TO DO WHEN DEATH OCCURS
ƒ Be aware of the dying person's care plan and have a checklist of whom
to call right after the death occurs. Strictly follow your agency's
procedures of whom to notify. Depending on agency policy, you may be
asked to notify others such as:
- A doctor
- A funeral director
- Clergy
ƒ When death has occurred:
- There is no breathing
- There is no heartbeat
- The muscles will relax
- The bladder and bowel may empty
- Fluid may spurt from the lungs
- The jaw is relaxed
- Mouth is open
- The eyelids are open
- The eyes are fixed on a certain spot
ƒ
-
When there is no breathing, you should:
Remain calm
Note and record the time of death
Close the person's eyes, if they are open
Call your supervisor
Notify family members
Try to keep the family as calm as possible
Respect the family's wishes
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8. HANDOUT
AGENCY PROCEDURES ON DEATH AT HOME
What Should A Volunteer Do When Death Occurs At Home:
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
______________________________________________
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EVALUATION
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EVALUATION
Module VI
The Process of Dying
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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MODULE VII
GRIEF AND BEREAVEMENT
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FACILITATORS OVERVIEW
Module VII
Grief and Bereavement
General Course Description: Provides the volunteer with an understanding of grieving and
loss, which will happen both before and after the death of the client. It will also provide some
help to the volunteer in acknowledging that they will feel their own grief when a client dies and
some assistance in helping them to cope with this.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
ƒ
Have explored the grieving process and understand it better;
Have knowledge of the factors, which may influence the grief experience;
Will have acquired some skills for communicating with the grieving person;
Will have learned ways to cope with their own grief.
Recommended Time Frame: This session is designed to be delivered in a three (3) hour format.
At this stage in the training program many of the issues may have already been raised in
discussion at previous sessions. If this is the case the facilitators may wish to shorten the session
so there is limited repetition. Also, the video and discussion is optional and if not used will
reduce the length of the module.
Process: The facilitator(s) should use a combination of lecture, small group discussion and case
studies.
ƒ Although the video is optional it is a powerful tool and is recommended in terms of training
tools. The facilitator may choose to combine many of the lecture items with a discussion of
an appropriate video.
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Module VII
SESSION OUTLINE AT A GLANCE
Grief and Bereavement
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
1. Welcome
2. Warm-up Exercise
3. Workshop Goals
Grieving the Loss
4. Lecture
5. Lecture
6. Lecture
7. Video and Discussion (Optional)
The Volunteer’s Grief
8. Lecture
9. Case Studies
Handouts/
Transparencies
Time
(mins.)
30
(1) Define Grief
What is Grief?
(2) Goals of the Workshop
60
(3) Anticipatory Grief
(4) Factors that Influence Grief
(5) Practical Communication Tips
60
(6) Ways to Cope with Grief
(7) Case Studies
BREAK
Closing
30
10. Wrap-up Exercise
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INTRODUCTION TO GRIEF AND BEREAVEMENT
Total Time: 3 hours
3. Workshop Goals
Time Allotment: 30 minutes
ƒ
Review the goals of the workshop with
the group.
1. Welcome
ƒ
ƒ
ƒ
Welcome participants to the workshop
on "The Grieving Process."
Explain that the focus of the
workshop will be to explore the
process of grieving a loss.
Define Grief.
Use transparency/ handout (2).
Goals of the Workshop:
ƒ
ƒ
ƒ
2. Warm-up Exercise
ƒ
To explore the grieving process;
To examine factors that influence a
person's grief experience;
To discuss ways to communicate with
a grieving person;
To learn ways to cope with grief.
Use transparency/ handout (1)
“What is Grief.”
Discuss with participants in light of their
own experience
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GRIEVING THE LOSS
Time Allotment: 60 minutes
withdrawal by the dying person is
appropriate in this stage.
ƒ
This time of anticipatory grief is a time of
striving for balance. The patient will have
different needs at different times, as will
the family caregivers. Holding on to hope
must be balanced with finding ways to let
go. It is important that families not detach
from the dying person even when the
patient begins to withdraw. The patient's
need for increasing care and attention
from the family must be balanced with
the patient's need for social and emotional
withdrawal.
ƒ
It is important to recognize that
anticipatory grief is not entirely directed
toward the future, but also includes grief
for past and present losses. People are
grieving for the life, abilities, health, and
all the things that are gone due to the
effects of the life threatening illness. In
the present, increasing dependency and
decreasing control are grieved. The future
losses that are being grieved include the
death, losses before and after the death,
and the absence of the dying person in the
family's future.
3. Lecture: Anticipatory Grief
Use transparency/ handout (3) to
illustrate the lecture on Anticipatory
Grief.
ƒ
ƒ
Anticipatory grief is grief that is felt in
anticipation of something harmful
happening in the future. It begins with a
diagnosis of life threatening illness, then
the realization that loss (death) will occur
and that it will have a huge effect on
one's life.
At this time, people are dealing with a
crisis that cannot be solved, which
threatens their life goals, and awakens
unresolved problems from the past.
Anxiety is very high and people often
respond, in the beginning, with very
strong emotions.
ƒ
Later, there is a time of repetitive stress,
when people are coping day to day with
the dying person's illness and limited
abilities.
ƒ
The terminal stage may begin when the
dying person draws into himself in
response to physical changes and limited
energies. Increasing lack of interest and
Source: Victoria Hospice Society's
"Palliative Care for Home Support Workers,
Section 1, Page 7.
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GRIEVING THE LOSS
4. Lecture: The Grief Process
ƒ
Present the lecture; highlighting
important ideas listed below and
other content that you have chosen.
Grief is a natural response to loss.
Grief is common across the vast majority of
cultures.
There are numerous kinds of losses that
people may suffer, and there is no way we
can avoid loss in our lives.
Question for the group: Consider your own
life and how often have you experienced
loss. What kind of loss have you
experienced? (Possible responses: A parent,
brother, sister, or child, a job, a familiar
neighbourhood, a home, some physical
ability, a pet, something you owned that
was important to you [wedding ring,
favourite earrings], health, friendship,
family, role, identity, independence,
country, finances, home, direction, sight,
energy, interest, ability to make decisions,
hope).
There is no right way to grieve and no set
time for grieving. Each person is different.
For some, grief is an intense experience, for
others it is rather mild. In same cases grief
goes on for a brief time, for others it seems
to go on forever.
Question for the group: What kinds of
things do you think influence the intensity
and duration of a person's grief?
Use transparency/handout (3) to
review factors that influence the intensity
and duration of grief.
Other information to be included in lecture:
___________________________________________________________________________________
___________________________________________________________________________________
___________________________________________________________________________________
___________________________________________________________________________________
___________________________________________________________________________________
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GRIEVING THE LOSS
5. Lecture: Expression of Grief
ƒ
Present the lecture; highlighting
important ideas listed below and
other content that you have chosen.
The way a person expresses their grief is
highly individual. A person's ethnic
background and gender are two important
factors that influence the expression of
emotion. Some people express their grief
through tears, others become angry. No
matter how emotions are expressed, they
should not be judged.
Use transparency/handout (3) & (4)
to review variety of emotional
feelings a bereaved person may experience.
ƒ
Volunteers should be prepared to be
witness to a wide range of behaviours
associated with grief. Some bereaved
people will experience a number of
feelings such as sadness, anger,
depression, blame, loneliness, relief;
others will experience physical
sensations such a tightness in the throat,
hollowness in the stomach, weakness in
the muscles, insomnia, anorexia; and
others will experience behaviours such
as intense crying, pacing, withdrawal. A
person can experience one or some or
none of these behaviours.
Questions for the group: Which
emotion have you encountered most
often? Which emotion do you feel is the
most difficult to deal with?
Review handout (5) for tips to
communicating with a bereaved person.
Other information to be included in lecture:
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
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GRIEVING THE LOSS
6. Video and Discussion
The purpose of this video is to examine
the experience of grief from the
perspective of a person who has
experienced recent loss. The impact of the
loss and reactions to losing a close
companion are examined.
ƒ
Items required for exercise:
What type of grief reactions were
experienced
ƒ
ƒ
ƒ
Video cassette player
Television
Video which illustrates results of grief
Begin by introducing the video as a
portrait of grief.
ƒ
Ask participants to focus on the main
character in the video and to
contemplate how they would respond
and feel in a similar situation.
After the film discuss the following
questions:
How did the person cope with the loss?
What were some of the grieving persons
main concerns?
Suggested videos:
Seasons of Grief (4) videos
BREAK
Stories of Grief
Home Alone
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THE VOLUNTEER’S GRIEF
Time Allotment: 60 minutes
7. Lecture: The Volunteer’s Grief
Present the lecture; highlighting important
ideas listed below and other content that you
have chosen.
Grief reactions of volunteers are similar to
those of the dying person and family but are
usually of less intensity and shorter duration.
The volunteer may experience grief before or
after a client dies. It is not considered
unprofessional to show grief.
A volunteer can avoid burnout by practicing
active grieving.
Question for the group: Have you ever
grieved over the death of someone you have
known but who was not a close family
member?
Review transparency/handout (6) and
highlight any ways of coping with grief,
which were not discussed.
8. Case Study Exercise
Distribute handout (7)
Ask participants to get together in small
groups to discuss the cases.
After participants have completed the
exercise, review with the class and discuss
the groups’ responses. (Refer to Facilitator’s
guide (7A) for a list of some appropriate
responses.)
Other information to be included in lecture:
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
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CLOSING
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Time Allotment: 30 minutes
10. Wrap-up Exercise
ƒ
Ask participants to share one new idea
or piece of information they learned at this
workshop.
ƒ
Allow time for participants to de-brief
and discuss any unresolved personal losses
that they wish to share.
1.
TRANSPARENCY/HAND
OUT
ƒ
Spiritual
WHAT IS GRIEF?
ƒ An active process
Involves:
ƒ Psychological
2.
TRANSPARENCY/HAND
OUT
ƒ Social
ƒ Physical
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GRIEF AND
BEREAVEMEN
T
WORKSHOP
GOALS:
ƒ To explore the
grieving process;
3.
TRANSPARENCY/HAND
OUT
ANTICIPATORY
GRIEF
ƒ To examine factors
that influence a
person's grief
experience;
ƒ In anticipation of
future harm or loses.
ƒ To discuss ways to
communicate with a
grieving person;
ƒ At first anxiety is high
and strong emotions
evoked.
ƒ To learn ways to cope
with grief.
ƒ Later stress repetitive
as attempt to cope day
to day.
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ƒ Time to strive for
balance.
ƒ Directed not only at
future but also present
and past losses.
ƒ Write a condolence
letter to client's
family.
ƒ Talk about feelings
with family, friends,
colleagues, and other
team members.
ƒ Talk about feelings
with supervisor.
4.
TRANSPARENCY/HAND
OUT
ƒ Remember the client
in your prayers if you
are religious.
WAYS TO COPE
WITH GRIEF
ƒ Express your grief.
ƒ Attend client's
funeral.
5.
TRANSPARENCY/HAND
OUT
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FACTORS
INFLUENCING
INTENSITY AND
DURATION OF GRIEF
ƒ Relationship to the
deceased.
ƒ Adult and childhood
experiences with loss.
ƒ
Degree of material
and emotional
dependency on the
deceased.
ƒ The bereaved person's age
and gender. The type of
death (sudden or
prolonged).
ƒ The condition of the body
(disfigured).
ƒ The quality of the
relationship just prior to
death.
ƒ The
need
to hide
feeling
s.
ƒ The
level
of
social
suppor
t.
ƒ Religious beliefs.
6. HANDOUT
SCENARIO # 1
A client you have been visiting
for a number of months died
before your visit. You never had
a chance to say goodbye to her
and you feel something is
unfinished. How can you
resolve your unsettled feelings?
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(6A)
FACILITRATOR’S GUIDE
SCENARIO #2
You were shocked to learn that
one of your client's was found
dead in her apartment. Thinking
back on your previous visit, you
remember her being quiet and
not interested in finishing the
meal you had prepared. You
begin thinking that maybe if you
had reported the change to your
supervisor she would not have
died. How do you deal with
your feelings?
SCENARIO # 1
A client you had been visiting for
a number of months died before
your visit. You never had a
chance to say goodbye to her and
you feel something is unfinished.
How can you resolve your
unsettled feelings?
Possible Responses:
ƒ Let yourself grieve.
ƒ Call the family and offer
condolences.
ƒ Attend the funeral.
ƒ Write the deceased a farewell
letter.
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SCENARIO #2
You were shocked to learn that
one of your client's was found
dead in her home. Thinking back
on your previous visit, you
remember her being quiet and
not interested in finishing the
meal you had prepared. You
begin thinking that maybe if you
had reported the change to your
supervisor she would not have
died. How do you deal with your
feelings?
Possible Responses:
ƒ Learn how to forgive yourself.
ƒ Discuss your feelings with
your family or friends.
ƒ Review your feelings with
your supervisor.
7. TRANSPARENCY
/HANDOUT
Examples of Manifestation
*Source: Cook & Oltjenbruns (1989).
8. HANDOUT
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PRACTICAL TIPS
TO DO
NOT TO DO
ƒ
Avoid Clichés such as “She had a good
life” or “She is out of pain”. Also avoid
spiritual sayings, they can provoke
anger.
ƒ
Do not minimize the loss.
ƒ
It is not necessary to say anything.
ƒ
Do not attempt to tell the bereaved how
he or she feels. A statement such as
“You must be relieved that she is no
longer in pain” is inappropriate.
ƒ
A simple “She will be missed” or
“I’m sorry” is better.
ƒ
Be a good listener. Accept how they
are feeling or behaving. Do not
change the subject.
ƒ
Accept silence. Silence is better than
idle chatter.
ƒ
You can ask a bereaved person how
they feel, but do not assume you
know.
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EVALUATION
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EVALUATION
Module VII
Grief and Bereavement
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENDED
LOCAL RESOURCES
GRIEF AND BEREAVEMENT
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Pictou County Health Authority (#6)
835 East River Road
New Glasgow, NS B2H 3S6
Tel: (902) 752-8311
BEREAVEMENT CARE PLAN
FOLLOW-UP PROGRAM
ABERDEEN HOSPITAL & SUTHERLAND-HARRIS MEMORIAL HOSPITAL
VOLUNTEER SERVICES
Name of Deceased:
Date of Death:
Diagnosis:
Contact Person:
Phone Number:
Age:
Calls:
1M
2M
3M
6M
12M
18M
24M
Notes:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
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DEFINITIONS
GRIEF:
Grief is a process in which an individual experiences a psychological, social and
physical reaction to loss. As a process, grief involves changes over time and
each person experiences it individually. A grief reaction occurs as a result of
any loss; not just death.
There are 5 important components of GRIEF:
1.
Grief is experienced in three major ways:
PSYCHOLOGICAL: (through one's feelings, thoughts and attitudes)
SOCIALLY: (through one's behaviors with others)
PHYSICALLY: (through one's health and bodily symptoms)
Often the grief process affects the spiritual realm, as one sorts through the why, what ifs,
and struggle with their relationship (if any) to their spiritual or religious beliefs.
2.
Grief is a process that involves many changes over time. It will vary in degree, appear and
reappear, and be experienced differently at different times.
3.
Grief is a natural and expected reaction to loss. In fact, the absence of grief after a loss is
considered to be "abnormal" in most cases.
4.
Grief is experienced as a reaction to all kinds of loss, not just death. Other examples would
include loss of job, divorce, loss of physical ability, etc.
5.
Grief is based upon the individual's perception of the loss. It is not necessary for the
person to have the loss recognized or validated by others in order to experience grief. This
is often true for women who have had abortions and stillbirths.
MOURNING: Mourning is the adaptation to loss. It is the conscious and unconscious
processes that:
1.
Gradually undo the psychological ties that bound the individual to the deceased.
2.
Help the person adapt to his/her loss.
3.
Help the individual to learn how to live a healthy life in the new world without his/her loved
one.
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BEREAVEMENT: This is the state of having suffered a loss. To be bereaved means
that you have suffered a loss of some sort. NOTE: The terms grief and bereavement will
be used interchangeably.
EFFECTS OF GRIEF
(By no means is this a complete list. Each individual is unique and can exhibit a number of the
following and certainly others that are not listed.)
PHYSICAL:
ƒ Tightness in throat
ƒ Shortness of breath
ƒ A need to sigh
ƒ Empty feeling in stomach
ƒ Tired muscles
ƒ Fatigue
ƒ Lack or increase in appetite
ƒ Over sensitivity to noise
SPIRITUAL:
ƒ Questioning the meaning of life
ƒ Asking about "what ifs" and "if only"
ƒ Conflict with religious/spiritual beliefs
ƒ Struggling with the fact that death is inevitable
ƒ Asking questions such as "why"?
BEHAVIORAL:
ƒ Socially withdrawn
ƒ Avoiding reminders of the deceased
ƒ Not interested in things that he/she once was
ƒ Dreams of the deceased
ƒ Dependent on others
ƒ Indecisiveness
ƒ Sleep/appetite disturbances
ƒ Absent-minded behavior
ƒ Frequent bouts of crying
(According to the Talmud, when God banished Adam and Eve from the Garden of Eden
Adam protested that the punishment was too severe. God considered their plea and found it
valid, so he gave them two gifts to help cope with the hardships of the world. The first gift
was the Sabbath for rest and contemplation and the second gift was the tear.)
EMOTIONAL:
ƒ Grief can encompass the whole gamete of emotions. The most common being anger,
anxiety, guilt, sadness, confusion, fear, loneliness and even at times relief.
ƒ Any emotion can be experienced and can vary in intensity.
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ƒ
ƒ
ƒ
Often people who are grieving will say that they feel that they are going "crazy". This is
often attributed to the fact that a variety of emotions can be experienced at once and can be
intense to the point of being overwhelming. Thus, it is difficult for the person to make sense
of what is happening to them.
ANGER is a very common emotion that is often felt by the grieving person; anger at the
deceased person for leaving them, anger at the health professionals that could not "fix"
him/her, anger at God for allowing the death to take place, etc. Often the anger is manifested
by guilt; guilt for things that they did not do or get to say, feeling that he/she should have
done more, etc.
Depression often is found in the bereaved. Suicide is always a concern with anyone who is
battling depression. The bereaved are no different and may speak of wanting to join their
loved one.
Source – Bereavement Education Session
Colchester/East Hants Palliative Care Team
Cumberland County Palliative Care Team
Michele Rigby B.S.W., R.S.W.
Terri – Lynn Smith B.A., B.S.W., R.S.W.
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BEREAVEMENT CARE PLAN FOLLOW-UP PROGRAM CALL GUIDELINES
1.
If this is the first time you are making bereavement follow-up calls, please take a few
minutes to familiarize yourself with this binder and review the contents.
2.
Volunteers: Please be sure to turn to the "time log" section of the book and fill in the
Attendance Log every time you come.
3.
When you make a call, please be sure to note the date and time. If there is no answer, note
that the call was made anyway. Do not leave messages. Please initial your notes.
4.
If there is no answer, try your call again one or two more times during that session and
make note of each call made.
5.
If, after three attempts, there was no answer during the session, go ahead and move the
sheet forward to the next appropriate month. Remember to initial your notes.
6.
After you have completed a call and made the necessary notes, please move the sheet
forward to the next appropriate month for a call-back based on the "Bereavement Care
Plan" intervals of 1, 2, 3, 6, 12, 18 and 24 months.
For example, if someone died in August 2002, the calls would be made in September (1),
October (2), November 2002 (3), February (6) and August 2003 (12), February (18) and
August 2004 (24). Please note that the sheets are not alphabetical, but chronological,
according to the date of death.
7.
Every time you end a call, please be sure to ask if the person would like another follow - up
phone call. If the person indicates he/she would like to hear from us again:
• Explain that it may be another volunteer who will call, indicate that further follow-up
is requested in your notes, and move the sheet (chronologically by date of death not
alphabetically) to the next month a call is to be made.
If the person indicates that they do not want further follow-up:
•
8.
Note that, initial it, and move the sheet to the "Inactive" binder. Please file these sheets in
chronological order based on date of death (not alphabetically).
If you have any questions or concerns, please bring them to the attention of the appropriate
staff member (Dennis, Ronnie or Sandi).
*Please note that these Guidelines are meant to help get you started and keep the binder in order
since a number of staff and volunteers use it. If you have any comments or suggestions please
feel free to let me know.
Source
Sandi Jantzi Coordinator of Volunteer Services, ext. 3875
Pictou County Heath Authority
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BEREAVEMENT CARE PLAN
PREAMBLE: The Northern Region Palliative Care Program is a network of services delivered by
an interdisciplinary team, for individuals and families who are living with or dying from a
progressive life threatening illness, or who are bereaved. The program provides comprehensive and
coordinated care addressing the physical, psychological, social and spiritual needs of the
individuals and families in the setting of choice, and by the most appropriate team members.
BELIEF: It is the belief of the Northern Region Palliative Care Program that grief is an important
aspect of the palliative experience. Grief can be addressed through the psychological, social,
physical and spiritual realms of well being. It is the hope/goal that the loss, grief, death planning
and bereavement support meets the expectations and needs of clients and families to their
satisfaction.
PURPOSE: Interdisciplinary team members will provide support during the grief process to
clients/family/caregivers and each other. The team recognizes anticipatory grief (before death) as
part of the grief process.
GOALS AND OBJECTIVES:
To provide information about the grief process:
ƒ
ƒ
ƒ
Information will be distributed routinely. These packets/information can include "Preparing
For An Expected Death at Home", "What Do I Do Now?" and age appropriate information for
children. Team members need to be cognizant of low literacy levels. Information will be
discussed with clients/caregivers individually on a regular/ongoing basis.
Team members will openly discuss grief and related issues (as well as anticipatory grief) with
clients and their significant others.
Team members will identify losses as they occur and discuss with the individual(s) the
reactions that are being experienced.
To be aware of support services for the bereaved:
ƒ
Team members will be aware of local community resources and pass this knowledge on to the
bereaved individual.
To assess and monitor the caregivers' coping strategies and support systems:
ƒ
ƒ
ƒ
The impact of the illness on clients, the family and caregivers will be assessed and monitored
from the first contact. Contact with caregivers will continue immediately after death and at
specified intervals up to 24 months after death. Deaths will be announced at weekly rounds.
A specific team member will maintain contact with the bereaved person(s) after the death of
the loved one.
A designated member of the team will send a sympathy card.
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GOALS AND OBJECTIVES: (Continued)
ƒ
The Coordinator of Palliative Care Volunteers will initiate bereavement follow-up with the
trained volunteers.
- A trained volunteer will be matched with the bereaved person(s) experiencing grief.
- The volunteer will develop a rapport with the individual and ask a series of guided
questions (the first phone call will also ascertain if the bereaved person(s) are interested
in beginning the bereavement follow up program) to determine how the individual is
coping with his/her grief. This will be via telephone, and at the following monthly
intervals: l, 2, 3, 6, 12, 18, and 24.
- The volunteer may also call on anniversaries, birthdays and all significant holidays and
dates for that individual.
To provide an opportunity for caregivers to reflect on the experience of caring for and the
death of the loved one:
ƒ
ƒ
ƒ
Support systems will be identified during the initial assessment of entry into the palliative care
program for continued informal support.
A bereavement care volunteer will remain in contact with the individual(s) for a 24-month
period or as long as desired by the bereaved person(s).
Individuals will be referred to community groups and resources as appropriate.
To assess impact of the death on the family functions, in terms of financial, emotional,
psychological and spiritual well being:
ƒ
ƒ
ƒ
ƒ
The initial assessment completed by the Palliative Care Consultant Nurse/Home Care
Coordinator at entry to the program will include an assessment of the family dynamics and
individual family roles.
Team members will provide emotional support as losses occur as well as the adjustment to the
same.
Team members will prepare family members for a change in familiar roles through education
and support.
Bereavement volunteers will discuss the impact, changes and adjustments with the bereaved
person(s) during the follow-up calls.
To provide support during the acute phase of grief (a process that can take time). To
support team members and be aware of accumulated grief.
ƒ
ƒ
As early as possible prior to the death, anticipated complicated grief issues will be referred to
the team Social Worker for follow-up (i.e. children, multiple losses).
Volunteers will identify and report any grief issues that they are uncomfortable dealing with to
the Coordinator of Palliative Care Volunteers. These issues, as well as complex grief, will be
automatically discussed with the Coordinator of Volunteer Services and referred to the Social
Worker for assessment. The Social Worker will consult and refer as necessary.
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GOALS AND OBJECTIVES: (Continued)
ƒ
Complex or complicated grief will be referred to the Social Worker. The Social
Worker will consult with a Bereavement Resource Team. The Bereavement
Resource Team consists of the Social Worker, Pastoral Care designate, Mental
Health designate and Coordinator of Volunteer Services. The team will meet on a
monthly basis for case review to make recommendations and appropriate referrals.
(Bereavement Care plans will not be discussed at weekly rounds unless absolutely
necessary. This is the purpose of the Bereavement Resource Team.)
To facilitate development of resources as needed:
ƒ
ƒ
Team members will identify and address the gaps in bereavement services/resources,
as identified by community, clients and caregivers.
Team members will facilitate in the advocacy for the development of identified
resources/services.
Team members are encouraged to recognize and address their own grief issues:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Deaths will be announced at weekly rounds.
Significant team members will be advised of deaths in a timely manner to ensure the
opportunity to attend funeral services.
Team members are encouraged to support one another during the grief process within
their team environment.
Team members are encouraged to identify any related issues that they are
experiencing due to unresolved personal/professional loss and seek assistance.
Team members will have individualized care plans to ensure self care, which will
include all four realms: physical, social, psychological and spiritual.
Team members who are not coping well with a death can seek assistance from the
team Social Worker, Pastoral Care and/or alternative professional individuals (i.e.
EAP) for support and/or referral.
Memorial services will be held annually or as appropriate honouring the memory of
the deceased PC clients.
The client's chart will be discharged once a bereavement care plan is in place (approximately
one month after death).
Source – Northern Region Palliative Care
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Guidelines for Bereavement Telephone Calls
Purpose
1. To provide supportive listening to those who have experienced a loss. William
Worden states that one of the ways people work through their grief is to talk about the
experience and what is happening to them. These phone calls provide the opportunity for those
interested in talking to a volunteer.
2. To provide some normalization on the grief experience. Grievers who have never
experienced a severe loss often do not know that what they are experiencing can be "normal".
These phone calls may provide the volunteer the opportunity to let the griever know that what
they are experiencing is part of the process. (e.g. - eating difficulties, sleeping disturbances,
crying, etc.)
3. To provide information about resources in the community as appropriate. This can
range from encouraging grievers to check with family doctors, to mentioning about groups in
the community. One volunteer has provided information about living in a seniors apartment
building to a new widow who was having trouble finding her way.
Telephone Calls
Calls are made to the next-of-kin as designated from the hospital data three to four
times a year; the first call coming in the first three months of bereavement, and then at roughly
six months, nine months, and just past the first anniversary date. The calls are assigned to the
volunteer, the information being put in the volunteer's section of the bereavement phone call
binder. A write-up about the death may also be included with this page, particularly if the death
occurred on the unit. (Staff writes a brief summary of the death and family reactions.)
Volunteers are required to document each call, giving a summary of the conversation
and any observations that the volunteer feels is pertinent to the situation. Each entry should be
dated and signed by the volunteer. The volunteer coordinator will review each call, and is
available to discuss any situation with the volunteer. If the volunteer feels particular urgency
about the call, leave a message on the coordinator's voicemail, or a note and the particular call
will be reviewed immediately, rather than within the usual ten days.
Each volunteer discovers their style in doing these calls. Please introduce yourself as
being part of the Palliative Care team. (If you use the word volunteer first, you may find
yourself spending more time talking about what that means, rather than providing the
listening ear for them.) Explain the purpose of the call, as our wishing to let them know they
are thought of, and to ask about what has been happening to them. (Or words to this effect.
Try to avoid asking, "How are you" as this means they have to say good or bad, and may
block further conversation. If you ask what has been happening, or what they are
experiencing, you will also discover how they are feeling.)
Some people will talk easily, the conversation being a release for them. Others will be
more guarded, and not talk much about themselves for various reasons. Volunteers may find it
helpful, especially if the call gets off to what seems to be a slow start to ask if they have any
trouble eating or sleeping. This is something almost everyone relates to immediately and is "safe
ground". (Saving them as two separate questions is helpful in case the volunteer needs to keep
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the ball rolling.) It is appropriate to ask at the end of the call if they would appreciate receiving
another call in a few months. (A specific date should not be mentioned, as we are not always on
schedule.) At the anniversary call, inform the griever that this will be the last call.
Difficult Situations
1. Crying, tears: These can be an embarrassment for the griever. Allow them to cry,
letting them know that this is normal. It may be difficult for you to listen, particularly as this
is all you can do. It is part of grief however, and you will find yourself more comfortable with
this as you do more calls.
2. Anger: This anger may directed at institutions, or people, or indeed the Palliative
Care Program. It is not necessary to defend any of these. Rather, support the griever by letting
them know that this must be very difficult, hurtful, for them to have this experience. In this
way you have not agreed or disagreed about the circumstance, but you have let them know
that you can appreciate how hard this is for them. The hospital has a patient representative
whom grievers can call with specific concerns related to the QEII.
3. Inebriation: These calls are not usually productive, so end them as soon as
possible and let them know you'll be calling them another time.
4. Advice giving: Try to avoid specific direction with grievers, rather asking them what
they are thinking about the issue and what plans they may have for dealing with the situation.
Encouragement as grievers wrestle with all the adjustments to their new life is helpful, and
different than advice giving.
5. Personal information: Avoid giving information about yourself or other team members.
If the call is at an inconvenient time, it can be rescheduled with another volunteer. Do not give
your phone number to grievers.
6. Suicide: If a person talks in such a way that you wonder about their safety, it is
appropriate to ask if they thought have hurting themselves. Only if you feel some ease in asking
the question.) If you feel that there is a problematic situation for whatever reason, indicate this in
your write-up. If you feel that it should be addressed within the next day, leave a message on the
volunteer coordinator's voicemail (3811), describing the situation fully. It is always appropriate
to encourage grievers to be in touch with their family doctor for whatever reason. Health is often
affected during grief. No volunteer has experienced a call where the person was suicidal, some
have been very sad however, and the encouragement to see the family doctor has been made.
Volunteer Experiences
Volunteers find the telephone calls challenging, but also very rewarding. The calls can be
very draining, depending on the circumstances and it may be that one or two of these type calls
are all that can be reasonably completed at one sitting. Other calls are less so, and more calls may
be completed. We do try to contact as many of the next-of-kin that we can, but the numbers are
great therefore we accomplish what we can. The experiences and emotions that grievers share
with the volunteers are very special. The appreciation that they show to you as you reach out to
them will surprise you. Someone calling to offer sympathy and support is an unusual occurrence
in our time, and many of the bereaved find this a wonderful support to them during these difficult
times.
Source – Palliative Care Program QEII
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GRIEF
The process of psychological, social and somatic reactions to the perception of loss.
Therese Rando
The Four Tasks of Mourning:
William Worden: Grief Counseling and Grief Therapy
1.
2.
3.
4.
To accept the reality of loss
To work through the pain of loss
To adjust to an environment in which the deceased is missing
To emotionally relocate the deceased and move on with life
Six Central Needs:
Alan D. Wolfelt: Understanding Grief Helping Yourself Heal
1. To experience and express outside of yourself the reality of the death.
2. To tolerate the pain that comes with the work of grief while taking good care of yourself
physically, emotionally and spiritually.
3. To convert your relationship with the person who died from one of presence to memory.
4. To develop a new self-identity based on a life without the person in your life who died.
5. To relate the experience of loss to a context of meaning.
6. To have an understanding support system available to you in the months and years ahead.
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MODULE VIII
FAMILY CENTERED CARE
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FACILITATOR’S OVERVIEW
Module VIII
Family Centered Care
General Course Description: Provides the volunteers with an understanding of the impact on
families of a member having a life threatening disease and how it is impossible to look at or deal
with the client in isolation. The participants will look at how family structures vary and how the
reaction of family members to terminal illness can be very different. Special focus will also be
given to the needs of children at these times.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
Have examined how the dying person fits into the family system;
Understand something of the impact of terminal illness on families;
Understand the needs of children in families at times of terminal illness.
Recommended Time Frame: This workshop is designed to be delivered in between three and
four hours. The decision may therefore be made to offer it as two sessions of 1 ½ or 2 hours
each.
Process: The facilitator(s) should use a combination of lecture, exercises, group discussion and
video. The second half of the workshop can be delivered by video using the tape developed by
Kim Widger of the IWK Hospital. In choosing this format, however, the facilitator must be very
familiar with the material presented and be prepared to lead discussion arising from the tape.
The facilitator may choose to stop the video from time to time as seems appropriate.
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Module VIII
SESSION OUTLINE AT A GLANCE
Family Centered Care
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
0. Welcome
0. Warm-up Exercise
0. Workshop Goals
Impact of Terminal Illness on Families
0. Video & Discussion – First Snowfall
0. Lecture
Handouts/
Transparencies
Time
(mins.)
30
(1) Goals of the Workshop
50
(2) Family Reaction to Dying Person
(3) Phases of Reactions
(4) Communicating with Families
BREAK
0. Children and Terminal Illness – Video
60
Closing
10
7. Wrap-up Exercise
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FAMILY CENTERED CARE
Total Time: 3 Hours
Time Allotment: 30 minutes
1. Welcome
ƒ
ƒ
Welcome participants to the workshop.
Explain that the focus of the workshop
will be on helping the dying person
within the content of his/her family.
useful to focus on their family of origin. If
members of the family have died they
should still be included in the drawing. A
deceased person is often still alive in the
memories of those left behind.
Explain that family members who are close
should also appear close together on the
drawing. Conflicts can be indicated by
placing members far away from each other.
ƒ
Begin by drawing an example on a flip
chart or blackboard. The following is
provided as a sample. The instructor
may wish to use his/her own family as
an example:
- Mother and Father have a good
relationship
- Mother is close to her daughters,
but father is distant
- One son is the “black sheep” and
does not communicate with
others
ƒ
After each participant has drawn her/his
family system, ask them to get together
in small groups of 3 – 5 to share and
explain their drawings.
2. Warm-up Exercise
Self Study Exercise – Family as System
The purpose of this exercise is to help
participants understand that individuals are
part of a family system. In a family,
members depend on one another and relate
to each other according to family rules and
norms. Some group members may find this
exercise challenging because of cultural
background or may find it difficult if their
family system has been disrupted by recent
loss or conflicts. In many cases the people
we are closest to are not biological family
members and they should be included in the
diagram too.
ƒ
Ask participants to take a few minutes
to draw their own family system.
(Participants should be given
permission to opt out of this exercise if
they feel uncomfortable.) It is often
Optional: (Do only if people are
comfortable)
At the end of the exercise, ask participants
to share similarities and differences in their
family systems. Reiterate the uniqueness of
families and the need to be non-judgmental
when working with clients and their
families.
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3. Workshop Goals
Review the goals of the workshop with the
group
Transparency/Handout (1)
Goals of the workshop:
ƒ
ƒ
ƒ
To examine how the dying fit into a
family system;
To learn the impact of terminal illness
on families;
To examine the impact of terminal
illness on children in families.
Explain that the later two goals will be
covered in a video taped workshop produced
by Kim Widger of IWK.
Also see Extra Resources Section.
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IMPACT OF TERMINAL ILLNESS ON FAMILIES
Time Allotment: 50 minutes
4. Video & Discussion - The
First Snowfall
1. Describe each characters
reaction to the impending death
Possible responses:
The purpose of this video is to
highlight unique reactions to dying
within a family system.
ƒ
Items required for
exercise:
Videocassette recorder
Television
Videotape # 2 Part I:
The First Snowfall
ƒ
Introduce the video, "The First
Snowfall".
ƒ
Ask participants to focus on each
character in the video and how they
react to the terminal illness.
ƒ
Explain that as helpers it is important
to be aware of the types of responses
that individuals can have to serious
illness.
ƒ
After the video, discuss the following
questions:
Husband - true sadness, loss of
identity, role change
Daughter - denial, anger, discomfort,
hopeful
Son - resentment at not being
appreciated, sadness, helplessness
Mother - acceptance, need for control/
independence, upset by children's
reactions)
2. What were the family conflicts?
(Possible responses; sibling rivalry,
treatment regime, changes in roles.)
3. What were some of the dying person's
hopes? (Possible responses: conflict
resolution, husband will be able to
manage independently without her, be
able to see the first snowfall, her
decisions would be respected.)
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IMPACT OF TERMINAL ILLNESS ON FAMILIES
Time Allotment: 20 minutes
5. Lecture Guide: Family reactions
to a dying person
ƒ
ƒ
Present the lecture, highlighting
important ideas below and other
content that you have chosen.
When presenting the material, keep in
mind the points brought up during the
discussion of the video. If possible,
relate some of the responses to specific
topic areas within the lecture.
Use transparency/handout (2) to
reinforce key points.
A life-threatening illness affects all
members of the family, even those who live
outside the home or far away.
Overwhelmed by the realization that they
are going to lose someone, family members
struggle to find ways to cope.
During the illness the family can be as
deeply disturbed by the events as the dying
person.
The most difficult task for family
members is dealing with their own
emotions.
As a result of the illness, some families are
able to deal with the stressful situation;
while others become completely
overwhelmed. Some families are able to
compensate for the loss of an important
family member; other families may be
irreparably crippled by the loss.
Question for the group: What do you
think influences how a family copes with
the illness? (Possible responses: past
experiences, the dying person's role in the
family, the seriousness and length of the
illness, the presence of family and outside
social support, financial situation and
cultural differences.)
Review transparency/handout (3),
which outlines the phase’s families, may go
through as the disease progresses.
Review transparency/handout (4)
which outlines some communication skills
to use with family members.
!
Ethical Alert: Volunteers should
be aware that families may struggle around
the DNR (Do Not Resuscitate) issue.
Volunteers must also work through their
own issues and ethical concerns.
BREAK
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IMPACT OF TERMINAL ILLNESS ON FAMILIES
Time Allotment: 60 minutes
6. Children and terminal illness
Use the video produced by the Isaac Walton
Killam Hospital for this portion of the
workshop. Stopping it as is appropriate for
discussion and questions.
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CLOSING
Time Allotment: 10 minutes
7. Wrap-up Exercises
ƒ
Ask participants to share one new idea
or piece of information they learned at
this workshop.
ƒ
Distribute the evaluation forms for the
workshop.
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1. TRANSPARENCY/HANDOUT
FAMILY CENTERED CARE
WORKSHOP GOALS
ƒ To examine how the dying fit into a family
system;
ƒ To learn the impact of terminal illness on families;
ƒ To examine the impact of terminal illness on
children in families.
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2. TRANSPARENCY/HANDOUT
FAMILY REACTIONS TO A DYING
PERSON
ƒ A life threatening illness effects all members of
the family regardless if they live close or far
away.
ƒ The family can be as deeply disturbed by the
illness as the dying person.
ƒ The most difficult thing for the family is that of
dealing with their own emotions.
▪ Some family members are able to cope with the
situation while others become completely
overwhelmed.
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3. TRANSPARENCY/HANDOUT
PHASES OF REACTIONS
ƒ
The family will progress through various phases in response to the dying persons
illness. However, each family is unique and may experience only one, all, or none
of these reactions:
ƒ FIRST PHASE:
√
√
√
√
Families are in shock;
Families may be highly disorganized;
Most common reaction is fear and denial;
Families blame others or the dying person for the illness.
ƒ MIDDLE PHASE:
√
√
√
√
√
√
Families adjust to the illness;
Families may feel frightened and express their fears;
Families are occupied with caring for the dying person;
Family members may feel exhausted, drained and/or impatient with the dying person;
Some family members may feel guilty that there is not enough time or energy to attend to
everyone in the family;
Need "time out" periods to restore their energy.
ƒ FINAL PHASE:
√
√
√
√
√
√
√
Families are confronted with the reality that death is near;
Families find themselves once again disorganized and in shock;
Family members may feel useless since no longer doing things for the dying person;
Some families may feel strong disappointment and frustration that the disease is finally
taking over;
Main emotions felt are sorrow, depression and anxiety;
Some families may withdraw from the dying person or become aggressive to hide their feelings;
Many families will mourn for the loved one in anticipation of the death;
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√
Not all family members accept death.
4. TRANSPARENCY/HANDOUT
COMMUNICATING WITH
FAMILIES
How to support the family in crisis:
1) Be a good listener
2) Respond in a non-judgmental way
3) Provide honest reassurance
4) Consult with the family and keep them informed.
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EVALUATION
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EVALUATION
Module VIII
Family Centered Care
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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EXTRA RESOURCES
INCLUDING RECOMMENED
LOCAL RESOURCES
FAMILY CENTERED CARE
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FORUM
A Statement of Assumptions and Principles Concerning Psychological Care of Dying Persons and
their Families
Developed by the Psychological Work Group of the International Work Group on Death, Dying, and Bereavement*
INTRODUCTION
The dying and their families face numerous psychological issues as death approaches. In writing the following assumptions and
principles concerning these issues we hope to counteract the tendency to focus too much on physical and technical care, to stimulate
readers to test the following assumptions against their own experience, and to incorporate them into their work
By psychosocial we mean the emotional, intellectual, spiritual, interpersonal, social, cultural, and economic dimensions of the
human experience. Assumptions and principles for spiritual care and bereavement have already been developed by other work
groups of the International Working Group on Death, Dying, and Bereavement (IWG).
By family we mean those individuals who are part of the dying person's most immediate attachment network regardless of blood
or matrimonial ties. The family, which includes the dying person, is the unit of care. By caregivers we mean those professionals and
volunteers who provide care to dying persons and their families. We have separated the dying person, the family, and caregivers for
the purposes of discussion only. Many of these assumptions and principles apply equally to dying persons and their families. They
may not apply to all cultures and belief systems.
These assumptions and principles may seem self evident, but should not be seen as generalities. They are ideals, which we
should strive to maintain, and thus they need to be translated into daily acts, and clinical interventions that serve to meet the needs of
dying persons and their families.
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ISSUES FOR DYING PERSONS
Assumptions
Principles
1.
Dying persons may choose to acknowledge or not to
acknowledge their impending death.
1.
Caregivers must recognize and respect the person's right
or need to deny or not to communicate about his or her
impending death. Caregivers may be helpful to family
members and others in understanding or accepting the
dying person's position, which may change with time.
2.
Dying persons can communicate about their impending
death in different cultural ways, encompassing verbal,
nonverbal, or symbolic ways of communicating.
2.
Caregivers must seek understanding and knowledge of
the dying person's cultural and lifestyle experiences.
Caregivers need to be astutely sensitive to nonverbal and
symbolic ways of communicating and recognize that
these modalities may be more significant to the dying
person than verbal expression.
3.
Dying persons have the right to information on their
changing physical status, and the right to choose whether
or not to be told they are dying.
3.
Caregivers need to be sensitive and perceptive to the
different ways the person may be requesting information
about his or her condition.
4.
Dying persons may be preoccupied with dying, death
itself, or what happens after death.
4.
The care giving team needs to be aware of the dying
person's concerns and fears in order to provide care,
which is responsive and supportive.
*THELMA BATES, Dept. of Radiotherapy, St. Thomas Hospital, London, UK, CONSTANCE CONNOR and STEPHEN CONNOR, Hospice of
Central Kentucky, Elizabeth town, Kentucky, USA, DONNA CORR St. Louis, Missouri, USA, ESTHER GJERTSEN, Den Norske Kreftforening,
Oslo, Norway, REV, DAVID HEAD, London, UK, SHIRLEY HENEN, Sandton, South Africa, ISA JARAMILLO, Bogota, Colombia, SCOTT
LONG, Connecticut Hospice, Branford, Connecticut, USA, and COL1N M. PARKES, Chorleywood, Hertfordshire, UK
5.
Dying person can have a deep-seated fear of
abandonment. They may therefore continue treatment
for the sake of the family or physician rather than in
the belief that it will be of personal benefit.
5.
Caregivers can be helpful to the dying person in
identifying feelings that may affect treatment
decisions. Caregivers may also be helpful in opening
communication between the dying patient and family
or physician, which may clearly reflect the patient’s
goal for treatment.
6.
Many dying persons experience multiple physical and
psychological losses before their death.
6.
Caregivers may be helpful in facilitating the
expression of grief related to the multiple losses to
terminal illness. Caregivers may also be helpful in
supporting the dying person’s need for continued
autonomy, satisfying roles and activities, and meaning
despite these losses.
7.
Dying persons exhibit a variety of coping strategies in
facing death.
7.
Caregivers need to be able to recognize the utility of
adaptive coping mechanisms and be tolerant of the
patient’s or family’s needed to use or abandon such
mechanisms. Caregivers can help to foster an
environment, which encourages the use of effective
ways of coping by accurately addressing the dying
person’s psychosocial concern.
8.
Dying persons generally need to express feelings.
8.
Dying persons should not be isolated but given the
opportunity to communicate.
9.
Dying persons communicate when they feel safe and
secure.
9.
Caregivers should strive to create an environment in
which communication can be facilitated, paying
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special attention to physical comfort, symptom
management, physical surroundings, privacy,
confidentiality, adequate time, acceptance of feeling,
and shared expectations.
10. Dying persons may find it helpful to communicate with
others who are terminally ill.
10. Opportunities should be encouraged for patient
interaction such as peer of professionally facilitated
support groups, social functions, or designated areas
within treatment settings where patients may
informally gather.
11. A dying person’s communication of concern about
death may be inhibited by a number of psychosocial
and culturally determined expectations.
11. Caregivers can be helpful in breaking through the
barriers, which inhibit the dying person’s true
expression of feelings.
12. Dying persons have a right to be acknowledged as
living human beings until their death.
12. Even when they seem severely impaired, dying persons
are still able to sense their own surroundings.
Caregivers should encourage behaviour, touch, and
communication, which continue to demonstrate respect
for the dying person.
13. Dying person’s psychological suffering may be greater
that their physical pain or discomfort.
13. Caregivers should recognize, and attend to, the
psychosocial component of suffering.
14. Dying persons may have difficulty in dealing with the
different or conflicting needs of family members.
14. Caregivers need to be aware of the dynamics within
each family and recognize the importance of dealing
with individual members as well as the family unit.
Caregivers should be sensitive to the presence of
conflicts between family members, and may need to
maintain a position of neutrality in order to be
effective.
ISSUES FOR FAMILIES
1.
Assumptions
Families have fundamental need to care and be cared
for.
1.
Principles
Families should be encouraged to provide whatever
care they can. Caregivers should not supplant the
family in the caregiver role except where the family
lacks physical or emotional resources, knowledge, or
desire to provide care. By providing care to family
members, caregivers may be better able to care for the
dying person.
2.
The need to care and the need to be cared for
sometimes conflict.
2.
Those who sacrifice their own need for care in order to
care for others need to be encouraged to accept help
for themselves. Some need to receive care before they
can give care.
3.
People vary in their coping abilities and personal
resources. Moreover, competing priorities may
3.
Caregivers should not impose their own expectations
on a family’s ability to care. Caregivers may need to
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hamper the amount and quality of care people are able
to give.
explore with the family what is reasonable for each
person to provide.
4.
The approach of death may disrupt the structure and
functioning of the family.
4.
Many families need counseling and support to prepare
for the dying person’s death and its consequences.
5.
Families need to have information about a dying
person’s condition, although in cases of conflict his or
her desire for confidentiality must be respected.
5.
The dying person and care giving team share the
responsibility for informing the family about the
person’s condition, depending on his or her ability to
participate. Whenever possible, the dying person and
appropriate caregivers need to agree on the source and
extent of information to be given to families.
6.
Families often need to be involved with the dying
person in decision-making.
6.
Guided by the dying person’s wishes, caregivers can
be helpful in facilitating joint decision-making.
7.
Families have a right to know that their affairs will be
shared only with those who have a need to know.
7.
Confidentiality must be maintained at all times and it’s
meaning taught to all caregivers.
8.
Family members need to maintain self-esteem and selfrespect.
8.
Caregivers should show respect at all times.
Caregivers do this by paying attention to family
wishes, feelings, and concerns.
9.
Sexual needs may continue up to the point of death.
9.
Caregivers should acknowledge dying persons’ and
their partners’ need to express their sexuality both
verbally and physically, with easy access to privacy
without embarrassment.
10. Families coping with terminal illness frequently have
financial concerns.
10. Caregivers need to assure that families have access to
informed advice and assistance on financial issues.
These issues represent present and anticipated
problems that may or may not be realistic.
11. Faced with death, the family may imagine that changes
will be greater than they are.
11. Caregivers can often allay fears with information and
support.
12. Families have a need and a right to express grief for
the multiple losses associated with illness, and for
impending death.
12. Caregivers can help families by encouraging
communication between families and the dying person
about their shared losses, and encouraging the
expression of grief.
ISSUES FOR CAREGIVERS
1.
Assumptions
Caregivers need education and experience in addressing
the psychosocial needs of dying persons and their
families.
1.
Principles
A combination of specialized courses in death and
dying, and clinical practicum’s in care of the terminally
ill and their families, may help to prepare caregivers to
deal with the physical and psychosocial needs of dying
persons.
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2.
Caregivers need to be aware of the dying person’s and
family’s psychosocial frame of reference in
acknowledging and coping with impending death.
2.
Caregivers need to be sensitive to the dying person’s and
family’s current willingness to acknowledge the reality
of their situation. Caregivers must not impose their own
expectation of how dying persons face death.
3.
Caregivers bring their own values, attitudes, feelings,
and fears into the dying person’s setting.
3.
Caregivers must recognize that they cannot take away all
the pain experienced in the dying process. Caregivers
need to be reassured that it is not a lack of
professionalism to display and share emotions.
Caregivers need to be aware of the way in which their
coping strategies affect their communication of
emotional involvement with the dying person and
family.
4.
Caregivers are exposed to repeated intense emotional
experiences, loss, and confrontation with their own death
in their work with dying person.
4.
Caregivers need to receive adequate support and
opportunity to work through their accumulated
emotions. Caregivers working with dying persons need
sound motivation, emotional maturity, versatility,
tolerance, and a special ability to deal with loss.
5.
Caregivers dealing with family groups sometimes
experience conflicting needs and requests for
information and confidentiality.
5.
Caregivers need to be prepared to deal with complex
family dynamics and to assist the family in resolving
their own conflicts.
6.
Caregivers may sometimes not communicate with each
other about their own needs and feelings.
6.
Caregivers need to be tolerant, caring, and nonjudgmental with each other in order to promote
cooperation, which will benefit the dying person’s care.
CHILDREN AND GRIEF
Facts
Misconceptions
‚
Routine activities are important but new
activities may confuse them.
‚
Not thinking about it delays grief.
Getting rid of reminders helps; encourage only
good memories.
‚
This tells them it's wrong to think of the
dead person or have bad memories.
I won't mention it unless they do.
‚
This suggests it is not all right to mention
the person; that there is something bad
about them or their death.
‚
They may feel hurt and sense your
They need to keep busy.
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discomfort.
Once they've been angry or guilty that should
be the end of it.
‚
Phases are circular and each implication of
the loss must be grieved.
It is morbid to want to touch or talk about the
body.
‚
It is healthy and concrete.
‚
It is a good way to say good-bye and make
the death seem real.
Use terms like "passed away" or "gone to
heaven.
‚
These confuse and frighten children:
"dead" is better.
If they are not expressing grief, children aren't
grieving.
‚
They may not know how to express
feelings or think they have permission to
grieve. They may delay grief to avoid
upsetting others.
I should tell them all the facts immediately.
‚
They may not understand all aspects of the
death or be able to handle the intensity.
Source – Cape Breton Health Care Complex Volunteer Handbook, 1994
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MODULE IX
CARING FOR YOURSELF
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FACILITATORS’ OVERVIEW
Module IX
Caring for Yourself
General Course Description: Provides the volunteer with an understanding of the grief they
may face and the stress they may become prone to because of their involvement in hospice
palliative care. They will examine ways they might counter this through appropriate self-care,
humour and relaxation.
Learning Objectives: At the end of the session the participants will:
ƒ
ƒ
ƒ
ƒ
Be able to recognize and better understand the grief process for volunteers;
Know about some of the signs of stress and the factors that contribute to it;
Have learned ways to cope with stress;
Have an understanding of what self-care methods might work for them.
Recommended Time Frame: This module is designed to be delivered in two and a half (2½
hours). At this stage, too, the volunteer may only need a brief overview of issues around stress
and self care. A more complete session may indeed be offered as an in service after the
volunteers have been active in hospice palliative care for a time.
Process: The facilitators should use a combination of lectures, small group discussion,
individual exercises and general group discussion.
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Module IX
SESSION OUTLINE AT A GLANCE
Caring For Yourself
The session agenda provided below can be used as a guideline when planning your workshop.
Activity
Introduction
1. Welcome
2. Workshop Goals
Handouts/
Transparencies
Time
(mins.)
15
(1) Goals of the Workshop
The Volunteer’s Grief
3. The Volunteer’s Grief
4. Case Studies
45
(2) Ways to Cope with Grief
(3) Case Studies
(3a) Facilitator’s Guide
Stress and Burnout
5. Lecture
6. Brainstorm Exercise
(4) The Warning Signs
25
BREAK
Coping with Stress
7. Lecture – Self Care
8. Exercise
9. Lecture - Humour
45
(5) When to Set Limits
(6) How to Say No
(7) Gentle Refusal
(8) Endings
(9) Self-Care Plan
Closing
15
10. Wrap-up Exercise
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CARING FOR YOURSELF
Total Time: 2 1/2 hours
Introduction
Time Allotment: 10 minutes
1. Welcome
ƒ
Welcome participants to a workshop that
will keep them focused on the need to
take care of themselves.
2. Workshop Goals
ƒ
Review Workshop Goals
Use transparency/handout (1) to
reinforce key points.
Goals of the workshop
ƒ To recognize the grief process of service
providers in palliative care;
ƒ To learn about the symptoms of stress
and burnout;
ƒ To discuss factors that may cause stress
to the volunteer;
ƒ To learn ways of coping with stress;
ƒ To develop a self-care plan.
Time Allotment: 45 minutes
3. Lecture: The Volunteer’s Grief
This is a repeat of some of the material in
Grief and Bereavement.
As a volunteer you will experience grief.
Your grief will be/or could be:
ƒ
ƒ
Similar to the dying person and family,
but usually less intense and of shorter
duration.
Experienced before or after the person
dies.
Remember it is not unprofessional or
unacceptable to show grief. In fact, a
volunteer can help avoid burnout by
practicing active grieving.
Discussion questions:
Have you ever grieved over the death
of someone who you were close to but who
was not a family member?
What helped you relief your grief?
Use transparency/handout (2) to highlight
ways of coping with grief.
Other materials to be included:
______________________________________
______________________________________
______________________________________
______________________________________
______________________________________
______________________________________
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STRESS AND BURNOUT
Time Allotment: 25 minutes
5. Lecture: Stress and
burnout
ƒ
Present the lecture; highlighting
important ideas listed below and other
content that you have chosen.
Underline that it is natural that
volunteers should feel the stress of
their involvement in palliative care. It
is also helpful if they can recognize it
in others around them, especially in
their clients and their families.
Use transparency/handout (3) to
reinforce points.
gastrointestinal problems such as stomach
cramps, diarrhea, etc.
Behavioral changes include, increase in
sick time, lateness, avoiding clients,
conflicts with others, changes in eating or
sleeping patterns, and abuse of substances
such as alcohol or cigarettes.
6. Brainstorm Exercise
ƒ
Ask participants to spontaneously call
out answers to each question.
ƒ
Record responses on a flip chart.
ƒ
After all ideas have been
exhausted, review the answers
provided by the group.
Stress is defined as demand placed upon
mental and physical energy. People have a
limited amount of energy available to deal
with stressful situations. If a person's
energy supply is not replenished the
outcome is exhaustion or burnout.
Brainstorm Question: What are some of
the unique stresses you feel you will face as
a volunteer working with dying persons?
(Possible responses: confronting death
daily; seeing client in pain; feeling helpless
and unable to change the situation;
providing intense personal care.)
Recognizing the symptoms of burnout is
the first step to preventing it from
getting out of control.
What are other stresses do we face
in life?
Common emotional reactions include:
being disillusioned with work, becoming
negative or cynical, lacking patience,
sudden mood swings, short attention span
and changes in personality.
Brainstorm Question: How do you
cope with stress in general? (Possible
responses: talking to others;
participating in enjoyable activities
outside work; reading; spending time
alone or with friends; etc.)
Physical symptoms include feeling tired,
getting headaches, suffering from
BREAK
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COPING WITH STRESS
Time Allotment: 45 minutes
5. Lecture: Self Care
“Self care has been referred to as an “ethical
mandate” for those in helping professions.”
Volunteers in palliative care must also learn
to take care of themselves so they can offer
the best possible support to the clients to
whom they are assigned.
Gentle Refusal:
ƒ
ƒ
ƒ
Acknowledge the request.
Set limits.
Extend invitation within the limits.
Setting limits.
As a volunteer you will also have to deal
with endings. This may be difficult with
client’s families you have helped during
their grieving. But usually, relationships
established for a specific purpose
will reach a stage where an ending
is required.
Use transparency/handout (4) to
explain the situations where this
maybe necessary.
Use transparency/handout (7) to illustrate
the task of ending.
An important element of self care is:
Explain that learning to say “no” is
important to a volunteer even if it may feel
unnatural.
Use transparency/ handout (5) &
(6) to explain how to say “no” and
how to give a gentle refusal.
How to say “no”
ƒ
ƒ
ƒ
ƒ
Take time to prepare and be firm.
Convey a sense of understanding as to
why the request is being made.
Trust yourself to know that the request
is not appropriate.
You have to uphold agency policies
and procedures.
This material is from the Victoria Hospice
Society. Palliative Care for Home Support
Workers 1995.
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COPING WITH STRESS
8. Exercise - Self-care Plan
Distribute handout (8).
ƒ
Ask participants to develop their own
care plan or ideas for looking after
themselves. (Explain that the exercise
is for their own learning and will not
be collected or shared with anyone
else.)
9. Humour
Share cartoons, jokes with participants about
death and dying. Ask for contributions.
(See Extra Resource Section.)
Discuss how participants feel about humour
in the context of death.
Explain how humour can be an invaluable
stress reliever for the volunteer, client and
families.
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CLOSING
Time Allotment: 15 minutes
ƒ
At the conclusion of the exercise
ask participants how they feel.
Explain that this workshop has
explored a way of relaxing and
reducing tension. This exercise
can be repeated by the volunteer
at any time to help them relax
after a stressful day.
ƒ
Ask participants to share one
enjoyable activity they plan to do
within the next week as a way of
replenishing their energy.
12. Wrap-up Exercise
The purpose of this wrap-up exercise
is to demonstrate a relaxation exercise
that participants can do at home to
help alleviate stress.
ƒ
Ask participants to get in a
comfortable position.
ƒ
Begin some relaxing music and
lead participants through the
relaxation exercise listed below.
ƒ
Speak slowly, pausing after each
sentence to allow participants to hear
the music and visualize the scene.
Deep Breathing Exercise:
"I want you to relax and take some deep
breaths. Think about your breathing. Feel
the air going in and out. Let your
breathing be completely relaxed. Let your
body breath by itself. Close your eyes.
Clear your mind of all thoughts. Begin
visualizing a calm nature scene. Think of a
serene lake in the mountains. Visualize
yourself lying in a meadow, the sun
warming your body. You can feel the
grass. Smell the flowers Hear the sounds
of nature … now, begin breathing deeply.
Take air in and out, in and out, in and out
... relax your body, continue to deep
breath, relax..." (Continue exercise for 2 –
4 minutes) ... When you are ready, open
your eyes.
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1. TRANSPARENCY/HANDOUT
CARING FOR YOURSELF
WORKSHOP GOALS:
ƒ To recognize the grief process of service
providers in hospice palliative care;
ƒ To learn about the symptoms of stress and
burnout;
ƒ To discuss factors that may cause stress to the
volunteer;
ƒ To learn ways of coping with stress;
ƒ To develop a self-care plan.
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2. TRANSPARENCY/HANDOUT
WAYS TO COPE WITH GRIEF
ƒ Express your grief.
ƒ Attend client's funeral.
ƒ Write a condolence letter to client's family.
ƒ Talk about feelings with family, friends,
colleagues, other team members.
ƒ Talk about feelings with supervisor.
ƒ
Remember the client in your prayers if you are
religious.
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3. TRANSPARENCY/HANDOUT
THE WARNING SIGNS OF BURNOUT
Mental /Emotional Symptoms:
ƒ Disillusioned with work
ƒ Withdrawal
ƒ Negative or cynical attitude; lack of patience (short
'"fuse"); mood swings
ƒ Short attention span; change in personality
Physical Symptoms:
ƒ Fatigue/ exhaustion; headaches
ƒ Gastrointestinal problems
Behavioral Symptoms:
ƒ Increase in sick time; lateness
ƒ Avoidance of clients; conflicts with others;
substance abuse
ƒ Changes in eating and sleeping patterns
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4. TRANSPARENCY/HANDOUT
WHEN TO SET LIMITS:
ƒ You want to say no to a request from a
client/family.
ƒ You feel you are being manipulated or pushed.
ƒ The client asks you a direct personal question you
don’t want to answer.
ƒ The client/family asks you to do something in
breach of policy or rules.
▪ A relative or professional associated with the
client asks you to break confidentiality.
Victoria Hospice Society, 1995.
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5. TRANSPARENCY/HANDOUT
HOW TO SAY NO?
ƒ Take time to prepare and be firm.
ƒ Convey a sense of understanding as to why the
request is being made.
ƒ Trust yourself to know that the request is not
appropriate.
ƒ Explain the need to abide by agency policy.
Victoria Hospice Society, 1995.
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6. TRANSPARENCY/HANDOUT
GENTLE REFUSAL
ƒ Acknowledge the request
ƒ Set limits
ƒ Extend an invitation (within limits)
Victoria Hospice Society, 1995.
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7. TRANSPARENCY/HANDOUT
ENDINGS
ƒ Be clear about when you are leaving and why.
ƒ Review your involvement; experience shared;
what is remembered; what is appreciated about
time together.
ƒ Talk about ongoing concerns; attend to those that
you can in time remaining and plan for those that
can’t.
ƒ Recognize the mutual loss and share feelings.
ƒ Ask about plans they may have for support and
identify where they may seek support.
ƒ When visiting a dying patient, say good-bye
before you leave. Say what you might regret not
saying.
ƒ Plan for closure yourself.
Adapted from Victoria Hospice Society, 1995.
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8. HANDOUT
SELF CARE PLAN
Things I really enjoy doing:
Things I find very relaxing:
Something I have always wanted to do but never had time for:
People I like to be around
List ideas of enjoyable activities you can reasonably do between
work and settling into your home:
Identify one new activity that you enjoy doing that you will
incorporate into your weekly routine:
Name one person you enjoy talking with, but rarely have the
time to speak with:
Pick a regular time to call this person. When and how often will
you promise yourself to call?
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EVALUATION
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EVALUATION
Module IX
Caring for Yourself
1. Practical usefulness of the material discussed:
Not useful
1
2
3
4
5
very useful
2. Clarity of presentation:
Unclear
1
2
3
4
5
clear
3. Amount of content:
Not enough 1
2
4
5
too much
3
4. Quality of session’s content and discussion:
Poor
1
2
3
4
5
excellent
5. Time spent on topic:
Too short
1
2
3
4
5
too long
6. Amount you learned:
Little
1
2
3
4
5
a great deal
7. Do you expect any change in your ideas as a result of you participation in this session?
Not at all
1
2
3
4
5
a great deal
8. The information that I found most useful was:
Why?
9. The information I found least useful was:
Why?
10. Comments/suggestions for further training/information sessions:
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MODULE X
LEGAL ISSUES IN PALLIATIVE CARE
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RESOURCE PERSON’S OVERVIEW
Legal Issues in Hospice Palliative Care
General Session Description: Provides the volunteer with information on legal concerns that
confront dying people and their families as well as any legal concerns they may need to be aware
of themselves around their involvement with their clients.
Learning Objectives: At the end of the session the participant will:
ƒ
ƒ
ƒ
ƒ
ƒ
Understand the concept of power of attorney;
Understand what a “living will” and a “Do Not Resuscitate” order is;
Have some knowledge of the organizations risk management strategy and the legal issues
which underpin it;
Understand that they should not give legal advice;
Have dealt with any legal concerns they may have about their own involvement.
Audience for the Session: The participants in the session you are presenting are individuals who
are choosing to volunteer as part of the Palliative Care Team. A position description for the work
they are doing is attached. This should help you understand what their main concerns will be
around their involvement.
ƒ They will not be called on to give legal advice, or to assist the dying person with any legal
matters. They may, however, need to provide direction to their clients and/or families about
appropriate avenues for getting the legal assistance they need.
ƒ Some volunteers may have concerns about their own liability for involvement and how they
can protect themselves.
Time Frame: The program coordinator would have indicated the time available to you. This
should be structured so that there is time at the end for questions and answers.
Process: The process used will in part be dictated by the time available. Remember, however,
that people retain information better as a result of visual aids, group discussion and case studies.
Lectures should be short and reinforced by general discussion.
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MODULE XI
RESOURCE SHEET
FUNERAL PLANNING
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RESOURCE PERSON’S OVERVIEW
Funeral Planning
General Session Description: Provides the volunteer with some information on issues that
families will face around funeral planning. This is meant to be an information session and not a
promotion for a particular form of approach to marking the passing of an individual.
Learning Objectives: At the end of the session the participant will:
ƒ
ƒ
ƒ
ƒ
Understand the options available for marking the death of individuals;
Have greater knowledge of where to direct families for information on options;
Understand the importance of ritual in the bereavement process;
Understand about cultural/religious variations in funeral rituals.
Audience for the session: The participants in the session you are presenting are individuals who
have chosen to volunteer as part of a hospice palliative care program. A position description for
the work they are undertaking is attached. There are limitations around the volunteers’
involvement and they are not free to give clients or their families advice around funeral planning.
The most they can do is give direction for where information on various options would be
available.
ƒ The client of the hospice palliative care program and their family may be preoccupied with
some issues around the funeral. It would be helpful for volunteers to be aware of some of the
options and issues that they are facing. It will also be very important for them to understand
that funeral rituals are culturally based.
Timeframe: The program coordinator would have indicated the time available to you. You
should structure the time so there is opportunity for discussion and questions at the end of the
session.
Process: The process used will in part be dictated by the time available. Remember however, to
that people retain information better as a result of visual aids, group discussion and case studies.
Lectures should be short and reinforced by general discussion.
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www.gov.ns.ca/snsmr/consumer/funserv.stm
The Consumer and Funeral Practices
Death is a difficult thing to think about. Most people like to avoid the subject, and are not
prepared for the expenses when a loved one dies. Since most people will have little or no
experience in making funeral arrangements, many are not aware of the choices that are
available.
Nova Scotia has laws to protect people who are buying funeral services. These laws prohibit
funeral directors or sales agents from contacting consumers directly by telephone or through
door-to-door sales. This protects consumers from unwanted pressure at the time of a death in
the family.
Even during difficult times, it is important to know your rights as a consumer and put them to
use.
Expenses
Prices provided by funeral directors often include the cost of the total service. This service
includes the cost of the casket, embalming, other funeral services and the fee for the funeral
director's services. It is possible to pick and choose, and if you ask, funeral directors must
itemize the cost of individual items and services for you.
The Casket
The casket is a major funeral cost and prices vary greatly. By law, the least expensive casket
must be included in any casket display.
Embalming
Embalming preserves a body for a short time, to improve the body's appearance for viewing.
In Nova Scotia, embalming is not required if the body is to be buried or cremated within 72
hours after death. Embalming is not done when a person dies of a communicable disease
specified in the Health Act, or one designated by the Minister of Health. In these cases,
funeral directors follow special burial preparations outlined in the Act.
Embalming and cosmetic restoration of the body are usually done when the body is to be
viewed in an open casket. It is not a legal necessity in most cases. Funeral homes will
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generally proceed with embalming unless you tell them not to.
Available Services
Prices usually include such goods and services as the casket, moving the body to the funeral
home, funeral home use, embalming and restoration, and the use of the hearse for
transportation to the cemetery or crematorium. The services will usually also include the
arrangement of the religious service, burial permit, cremation permit, newspaper notices,
arrangement and care of flowers, acknowledgment cards and other staff services.
Funeral Service
A funeral service is usually held with the remains present, and generally takes place within a
few days after death. If you are making arrangements and you choose a funeral service, you
must make several decisions. What type of casket is to be used? Should it be open or closed?
Who will conduct the service and where will it be held?
Friends and relatives often send flowers. Many people prefer donations to a charity or
society. Tell the funeral home which is preferred as soon as possible.
Memorial Service
A memorial service is usually held when the remains are not present at the service. This
could be because direct burial or cremation has occurred, or the body has been donated to
science. Direct burial or cremation means the body is taken from the place of death and
buried or cremated immediately. This is called a "disposal arrangement" by funeral directors.
It eliminates embalming, viewing and other costs associated with conventional funerals.
Arrangements are simple and relatively inexpensive.
Direct disposal is often followed by a memorial service. Like funerals, a memorial service
may be public or private, formal or informal. It is usually held in a church, funeral home
chapel or family home. The timing of the memorial service is flexible. However, it is usually
held within a few days after death.
The Burial
There are two methods of burial. One is an in-ground burial where the body is placed in a
casket and lowered into the ground. Some cemeteries require a liner of wood or concrete.
This structure keeps the ground even and solid to allow for proper maintenance.
Another, more expensive form of burial is when the casket is permanently placed in a
building or mausoleum above or just below the ground.
Cemetery costs vary. Ask for a written statement listing all costs before the purchase is
finalized. You should ask about plot prices. Prices will vary according to location. As well,
restrictions may depend on the type of burial chosen. You should ask about the price of the
opening and closing of the grave. Also, inquire about the installation charges on grave
markers and monuments. Are there any restrictions on monument style? What are the costs
and services of perpetual care? Does the cemetery allow two caskets in one gravesite? Some
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will permit two burials, one deep and one shallow, in the same plot. Ask if there are vault or
rough box requirements and related charges. Ask about veteran's rates. There are special
burial grounds in some areas for veterans. Check with the federal Department of Veteran's
Affairs.
Cemeteries are regulated under the Cemetery and Funeral Services Act. Some parts of this
Act do not apply to all types of cemeteries. Those operating for profit are generally regulated
under the Act. Part of the price of a cemetery lot must be deposited in a trust account and the
interest used by the cemetery to care for the grounds. A plan of the cemetery must be filed
with Service Nova Scotia and Municipal Relations.
When you buy a plot in a cemetery, you gain certain rights. You have the right of reasonable
access, and the right to erect a memorial on the lot. The purchase agreement may say what
kinds of memorials you can or cannot put up.
Cremation
When someone is cremated, both the body and the casket (or cremation container) are burned
completely. There is no law saying that a coffin must be used in cremation. However, funeral
chapels and crematoria do request that the body be in a container, which will burn, has a hard
top, sides and bottom, and has handles. This is sometimes referred to as a cremation casket.
After cremation, usually a small amount of ash is left. The crematorium may dispose of it
(usually by scattering) or the ashes may be shipped to the next of kin in a cardboard
container. If the ashes are to be kept or buried by the family, an urn can be made or
purchased.
There are no legal restrictions on the family scattering the ashes at a chosen spot, such as a
body of water, or in the wild. The scattering of ashes on land is subject to the laws regarding
property. In cemeteries, facilities for receiving ashes vary. Some cemeteries have an urn
garden where cremation plots are available. Ashes may also be scattered or buried in a family
plot, provided permission has been given by the cemetery.
Pre-Arrangements
When you make arrangements in advance, your survivors are spared the burden of decisionmaking during their time of grief. It also helps to ensure your wishes are known. Prearrangements are generally made through a funeral home or through a memorial society. It is
legal to arrange for a burial or cremation without the services of a funeral director.
Most Nova Scotia funeral homes offer pre-arranged plans. Pre-arrangement means you
decide on the type of funeral you want, and in most cases, pay for the services when the
arrangements are made. The Cemetery and Funeral Services Act says that all details of the
arrangements and the costs must be in written contracts, with a copy provided to the
purchaser.
Any money paid to a funeral home for a pre-arranged plan must be deposited in a trust
account. All accrued interest must remain in the account until the services are provided, or the
contract is cancelled. It is possible to buy an insurance policy to cover funeral expenses, but
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arrangements are made with an insurance company rather than a specific funeral home.
Pre-arranged funeral agreements entered into at a place other than a funeral home or a seller's
place of business may be cancelled within ten days by registered mail or in person. This can
be done without any penalty to the purchaser, and all money paid must be refunded.
A pre-arranged funeral plan may also be cancelled at any time – no matter where the contract
was signed. However, the seller may keep the interest plus ten per cent of the principal of the
money paid and held in trust.
If you buy anything for the funeral, and you cancel the contract, you will receive those items
instead of cash. The purchaser's personal representative may cancel the contract if great
distances or unusual circumstances prohibit the use of the goods or services at the time of
death.
Pre-need plans for cemetery lots, grave liners, vaults, urns, memorials (and their installation)
as well as the opening and closing of grave sites can also be pre-arranged. The sale of preneed cemetery plans is also regulated by the Cemetery and Funeral Services Act. The parts of
the Act that apply to the pre-arranged funeral plans also apply to the sale of pre-need
cemetery plans. The sale of cemetery lots, either at the time of need, or on a pre-need basis
are also regulated by the Act. If you buy cemetery lots, you don't have the same rights of
cancellation that you would have with other funeral items.
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HOSPICE PALLIATIVE CARE
DEFINITIONS
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HOSPICE PALLIATIVE CARE
DEFINITIONS
Acute Pain
Intense, sharp and localized pain, usually ending in a relatively
short time.
Anticipatory Grief
Grief that is felt in anticipation of something harmful happening in
the future. It begins with a terminal diagnosis, then the realization
that loss (death) will occur and that it will have a huge effect on
one’s life.
Assess
To identify, describe and validate information.
Bereavement
The state of having suffered a loss.
Breakthrough Pain
Breakthrough pain is pain that re-emerges before the next dose of
pain medication. It is a spontaneous episode or manifestation of
pain experienced by the patient even though he/she is taking
regular pain medication; these episodes of pain may be caused by
movement (also referred to as incidental pain) but it is important to
be aware that the presence of breakthrough pain may indicate only
that the dose or potency of the routine pain medication prescribed
for pain management is inadequate. Pain medication taken
regularly creates a barrier, which controls the pain at an acceptable
level (the patient does not feel or perceive any pain). In some
cases however, pain may break through this barrier; hence, the
patient must take an additional dose of medication in order to
control the pain (at an acceptable level). Pain may not always
remain at constant levels. Some patients will have significant
exacerbation of their pain; they may have periods when pain
spontaneously becomes more intense.
Client
The immediate recipient of the services of the palliative care team.
(In other words the terminally ill person.) There are many terms
which could be applied including patient, resident and customer,
but for the purposes of this resource kit, client is the term used.
Confidentiality
Holding as secret information that has been given in trust. In the
case of palliative care any information that a volunteer receives
directly from the client or as a result of their involvement with a
client must not be shared. This information would also include
program information and information about other volunteers and
staff.
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Care
Assistive, supportive or facilitative acts on the part of service
providers and caregivers to meet an expectation or a need, which is
identified. It is a process, which responds to changing expectations
and needs.
Caregiver
Any unpaid person delivering care of the patient and family. May
be a volunteer, family member or friend, whether they work in a
related profession or not. (NOTE: Paid caregivers are not included
in this definition – see Support Worker.)
Care Plan
The plan for delivering of the total group of services that have been
identified as appropriate to meet the expectations and needs of the
patient and family.
Care Team
A group of people with different skills who work together with a
common goal to assist the ill or dying person and his/her family.
Chronic Pain
Slow, continuous pain which fails to end quickly. Chronic pain is
a symptom of arthritis and other similar disorders which last more
than six months. It is frequently described as dull and aching. It
may vary in intensity or remain constant. Chronic pain may be as
severe as acute pain and is associated with depression and anxiety.
Ethics
Systems of moral values which deal with principles of right and
good conduct.
Ethical
Relating to or of ethics: conforming to right principles of conduct
as accepted by a specific profession (such as medicine) or society.
Family
A family is who the person says it is, i.e. those closest to the
patient in knowledge, care and affection. This includes: the
biological family, the family of acquisition (related by
marriage/contract), and the family of choice and friends (not
related biologically or by marriage/contract).
Grief
Sorrow experienced in anticipation of, during and after a loss.
Palliative Care
The combination of active and compassionate therapies designed
to support individuals living with, or dying from, a progressive
life-threatening illness, their families and their friends, to include
bereavement support. NOTE: The words palliative care and
hospice are used interchangeably in this resource.
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Service Provider
Any paid individual delivering care to meet the physical,
psychological, social and spiritual expectations and needs of the
patient and family.
Spirituality
Is concerned with the transcendental, inspirational and existential
way to live one’s life as well as, in a fundamental and profound
sense, with the person as a human being. Organized religion may
be a part of an individual’s spirituality.
Support Worker
Paid caregivers who are often referred to as paraprofessional or
unregulated workers, personal care assistants, visiting
homemakers, etc., working in both facility and home-based
environments.
Team
(See Care Team.)
Transcultural
Care which is culturally sensitive and appropriate.
As adapted from the Canadian Palliative Care Association Homemaker’s Manual.
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EXTRA RESOURCE MATERIALS
PALLIATIVE CARE
STORIES, QUOTES, POEMS, ETC.
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IF YOU ARE GOING TO HELP ME
1. Please be patient while I decide if I can trust you.
2. Let me tell my story, the whole story, in my own way.
3. Please accept that whatever I have done, whatever I may do, is the best I have
to offer and seemed right at the time.
4. I am not a person. I am this person, unique and special.
5. Don’t judge me as right or wrong, bad or good. I am what I am and that’s all
I’ve got.
6. Don’t assume that your knowledge about me is more accurate than mine. You
only know what I have told you. That’s only part of me.
7. Don’t ever think that you know what I should do – you don’t. I may be
confused, but I am still the expert on me.
8. Don’t place me in a position of living up to your expectations. I have enough
trouble with mine.
9. Please hear my feelings, not just my words – accept all of them. If you can’t,
how can I?
10. Don’t save me! I can do it myself. I knew enough to ask for help, didn’t I?
Help me to help myself.
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DIFFERENT DRUMS AND DIFFERENT DRUMMERS
If I do not want what you want, please try not to tell me that what I want is wrong.
Or if I believe other than you, at least pause before you correct my view.
Or if my emotion is less than yours, or more, given the same circumstances, try not
to ask me to feel more strongly or weakly.
Or yet if I act, or fail to act, in the manner of your design for action, let me be.
I do not, for the moment at least, ask you to understand me. That will come only
when you are willing to give up changing me into a copy of you.
I may be your spouse, your parent, your offspring, your friend, or your colleague.
If you will allow me any of my wants, or emotions, or beliefs, or actions, then you
open yourself, so that some day these ways of mine might not seem so wrong, and
might finally appear to you as right – for me. To put up with me is the first step to
understanding me. Not that you embrace my ways as right for you, but that you
are no longer irritated or disappointed with me for my seeming waywardness. And
in understanding me you might come to prize my differences from you, and far
from seeking to change me, preserve and even nurture those differences.
Taken from Please Understand Me by Keirsey and Bates.
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CARE FOR THE CAREGIVER
We cannot change anyone else.
We can only change how we relate to them.
Give support, encouragement and praise to others.
Learn to accept it from others.
Caring and being there are often more important than doing.
Learn to recognize the difference between complaining that relieves
and complaining that reinforces negative stress.
Be a resource to yourself.
Find a hermit place and use it daily.
On the way home, focus on one good thing that occurred during the day.
Seek help for yourself when the burden becomes too great.
And remember: If you never say “no”, what is your “yes” really worth?!
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“PLEASE
LISTEN”
When I ask you to listen to me and you start by giving advice, you have not done
what I asked.
When I ask you to listen to me and you begin to tell me why I shouldn’t feel this
way, you are trampling on my feelings.
When I ask you to listen to me and you feel you have to do something to solve my
problem, you have failed me, strange as that may seem.
Listen!! All I asked was that you listen, not talk or do – just hear me.
Advice is cheap; a few cents can get you both Dear Abby and Billy Graham in the
same newspaper.
And I can do for myself. I am not helpless. Maybe discouraged and faltering, but
not helpless.
When you do something for me that I can and need to do for myself you contribute
to my fear and inadequacy.
BUT WHEN YOU
Accept as a simple fact that I do feel what I feel, no matter how irrational,
then I can quit trying to convince you and can get to this business of understanding
what’s behind this irrational feeling.
And when that’s clear, the answers are obvious and I may not need advice.
Irrational feelings can make sense when we understand what’s behind them.
So please listen and just hear me.
And, if you want to talk, just wait a minute for your turn, and then I’ll listen to you.
Adapted from Dr. Ray Houghton
Trinity Reformed Chimes
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Please Hear What I’m Not Saying
Don’t be fooled by me. Don’t be fooled by the face I wear. For I wear a mask. I wear a
thousand masks, masks that I’m afraid to take off, and none of them are me.
Pretending is an art that is second nature with me, but don’t be fooled. Please. Don’t be fooled.
I give you the impression that I’m secure, that all is sunny and unruffled with me, within as well
as without; that confidence is my name and coolness is my game; that the waters are calm and
that I’m in command and I need no one. But don’t believe me; please don’t believe me.
My surface may seem smooth; but my surface is my mask, my ever-varying and ever-concealing
mask. Beneath it lies no smugness, no coolness, no complacence. Beneath dwells the real me, in
confusion, in fear, in loneliness. But I hide this: I don’t want anybody to know it. I panic at the
thought of my weakness being exposed. That’s why I frantically create a mask to hide behind, a
nonchalant sophisticated façade to help me pretend, to shield me from the glance that knows.
But such a glance is precisely my salvation. My only salvation. And I know it. It’s the only
thing that can liberate me from myself, from my own self-built prison walls, from the barriers
that I so painstakingly erect. But I don’t tell you this. I don’t dare. I’m afraid to.
I’m afraid your glance will not be followed by love and acceptance. I’m afraid that you will
think less of me, that you’ll laugh, and your laugh will kill me. I’m afraid that deep down inside
I’m nothing, that I’m just no good, and that you’ll see the real me and reject me.
So I play games, my desperate, pretending games, with a façade of assurance on the outside and
a trembling child within. And so begins the parade of masks, the glittering but empty parade of
masks. And my life becomes a front.
I idly chatter with you in the suave tones of surface talk. I tell you everything that’s really
nothing, nothing of what’s crying within me. So when I’m going through my routine don’t be
fooled by what I’m saying. Please listen carefully and try to hear what I NOT saying: what I’d
like to be able to say; what, for survival, I need to say but can’t say. I dislike the hiding.
Honestly I do. I dislike the superficial phony games I’m playing.
I’d really like to be genuine, spontaneous, and me; but you have to help me. You have to help
me by holding out your hand, even when that’s the last thing I seem to want or need. Each time
you are kind and gentle and encouraging, each time you try to understand because you really
care, my heart begins to grow wings. Very small wings. Very feeble wings. But wings. With
your sensitivity and empathy and your power of understanding, I can make it. You can breathe
life into me. It will not be easy for you. A long conviction of worthlessness builds strong walls.
But love is stronger than strong walls, and therein lies my hope. Please try to beat down those
walls with firm hands, but with gentle hands, for a child is very sensitive, and I AM a child.
Who am I, you may wonder?
I am someone you know very well. For I am every man, every woman, every child….every
human you will ever meet.
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1. PERSONAL THOUGHTS ON DEATH AND DYING - (handout)
a. What is it that you fear most about dying?
b. If you could choose the manner of your death, how would it be? Give reasons for your
choices.
c. If you had a terminal illness, would you want to know? Who would you tell? Why?
d. If you knew you had only one week to live, what would you do with this remaining time?
e. If you were to die today, what would you say has been your greatest accomplishment? Your
greatest regret?
f. What would be the most frightening way to die?
g. What does death or dying mean to you?
h. Try to remember your first experience with death. Who or what was it that died? How did
you feel at the time? How do you feel about it now?
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IN A HOSPITAL ELEVATOR
Going Up
What am I going to say, Lord?
He's dying.
But the family doesn't want him to know.
In fact, the family won't face it.
Shall I be cheerful? Or solemn
Either way,
I'd be self-conscious. And that's no good.
Do I play games, pretend that he'll get well?
What would you do, Lord?
Maybe I should pray with him. After all, he's a Christian, Lord?
But would praying together make him think that I thought he was dying?
I wish I knew
What to do, Lord.
Excuse me – this is my floor.
Going Down
Well, Lord, that was a surprise.
I hardly said a word.
It was he
who did the talking. The smile on his pale face almost broke me up.
He seemed so glad to see me, and he held my hand so tight.
How concerned he was bout his family
At a time like that!
It made me feel pretty small.
When he said he knew
he wouldn't leave that room alive,
I actually felt relieved.
When he said he wasn't afraid, had no regrets,
I could have cried.
And when we prayed together, I was convinced,
as he already was, that death is nothing to be feared. .
So why was I worried about visiting -him?
Didn't I know all along. That You would be there, Lord?
Robert J. McMullen Jr. Charlotte, North Carolina
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IN THE SERVICE OF LIFE
By Rachel Naomi Remen
In recent years, the question "How can I help?" has become meaningful to many people. But
perhaps there is a deeper question we might consider. Perhaps the real question is not "How can I
help?" but "How can I serve?"
Serving is different from helping. Helping is based on inequality; it is not a relationship between
equals. When you help, you use your own strength to help those of lesser strength. If I'm
attentive to what's going on inside of me when I'm helping, I find that I'm always helping
someone who's not as strong as I am, who is needier than I am. People feel this inequality. When
we help, we may inadvertently take away from people more than we could ever give them; we
may diminish their self-esteem, their sense of worth, integrity and wholeness. When I help, I am
very aware of my own strength. But we don't serve with our strength, we serve with ourselves.
We draw from all of our experiences. Our limitations serve, our wounds serve, even our darkness
can serve. The wholeness in us serves the wholeness in others and the wholeness of life. The
wholeness in you is the same as the wholeness in me. Service is a relationship between equals.
Healing incurs debt. When you help someone, they owe you one. But serving, like healing, is
mutual. There is no debt. I am as served as the person I am serving. When I help, I have a feeling
of satisfaction. When I serve, I have a feeling of gratitude. These are very different things.
Serving is also different than fixing. When I fix a person, I perceive them as broken and their
brokenness requires me to act. When I fix, I do not see the wholeness in the other person or trust
the integrity of the life in them. When I serve, I see and trust that wholeness. It is what I am
responding to and collaborating with.
There is a distance between ourselves and whatever or whomever we are fixing. Fixing is a form
of judgment. All judgment creates distance, a disconnection, an experience of difference. In
fixing, there is an inequality of expertise that can easily become a moral distance. We cannot
serve at a distance. We can only serve that to which we are profoundly connected, that
which we are willing to touch. This is Mother Teresa's basic measure. We serve life not
because it is broken but because it is holy.
If helping is an experience of strength, fixing is an experience of mastery and expertise. Service,
on the other hand, is an experience of mystery, surrender and awe. A fixer has the illusion of
being casual. A server knows that he or she is being used and has a willingness to be used in the
service of something greater, something essentially unknown. Fixing and helping are very
personal; they are very particular, concrete and specific. We fix and help many different things in
our lifetimes but when we serve, we are always serving the same thing. Everyone who has ever
served through the history of time serves the same thing. We are servers of the wholeness and
mystery of life.
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The bottom line, of course, is that we can fix without serving. And we can help without serving.
And we can serve without fixing or helping. I think I would go so far as to say that fixing and
helping may often be the work of the ego and service the work of the soul. They may look
similar if you're watching from the outside, but the inner experience is different. The outcome is
often different too.
Our service serves us as well as others. That which uses us strengthens us. Over time, fixing and
helping are draining, depleting. Over time, we burn out. Service is renewing. When we serve, our
work itself will sustain us.
Service rests on the basic premise that the nature of life is sacred, that life is a holy mystery which
has an unknown purpose. When we serve, we know that we belong to life and to that purpose.
Fundamentally, helping, fixing and service are ways of seeing life. When you help, you see life
as weak; when you fix, you see life as broken; when you sever, you see life as whole. From the
perspective of service, we are all connected. All suffering is like my suffering and all joy is like
my joy. The impulse to serve emerges naturally and inevitably from this way of seeing.
Lastly, fixing and helping are the basis of curing but not of healing. In 40 years of chronic
illness, I have been helped by many people and fixed by a great many others who did not
recognize my wholeness. All that fixing and helping left me wounded in some important and
fundamental ways. Only service heals.
R. N. Remen is Medical Director & Cofounder of the Commonwealth Cancer Help Program,
Bolinas. California. She is Assistant Clinical Professor of Family & Community Medicine.
University of California. San Francisco. School of Medicine.
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Looking Inward
Your Background Related to Death
1. What was your first encounter with death? Recall your feelings and needs at the time. How did
others respond to those feelings and needs? What is your most vivid image associated with
this first loss experience?
2. How was the topic of death dealt with in your family? Was it ignored? Was it considered taboo?
Was it discussed openly and matter-of-factly?
3. Can you remember the first funeral that you attended? How were you prepared for this
experience? What do you remember about it? What feelings did you have? How was the
funeral and your response influenced by religion and culture?
4. What significant losses have you had? Which one was the most painful and why? In what
ways has this affected your life? In what ways, if any, has this affected the way you do
therapy?
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A Woman With A Fork
There was a young woman who had been diagnosed with a terminal illness and had been given
three months to live. So as she was getting her things “in order,” she contacted her Rabbi and
had him come to her house to discuss certain aspects of her final wishes.
She told him which songs she wanted sung at the service, what scriptures she would like read,
and what outfit she wanted to be buried in.
Everything was in order and the Rabbi was preparing to leave when the young woman suddenly
remembered something very important to her.
“There’s one more thing,” she said excitedly.
“What’s that?’ came the Rabbi’s reply.
“This is very important,” the young woman continued. “I want to be buried with a fork in my
right hand.”
The Rabbi stood looking at the young woman, not knowing quite what to say.
“That surprises you, doesn’t it?” the young woman asked. “Well, to be honest, I’m puzzled by
the request,” said the Rabbi.
The young woman explained. “My grandmother once told me this story, and from that time on I
have always tried to pass along its message to those I love and those who are in need of
encouragement.
In all my years of attending socials and dinners, I always remember that when the dishes of the
main course were being cleared, someone would inevitably lean over and say,
“Keep your fork.” It was my favorite part because I knew that something better was
coming…like velvety chocolate cake or deep-dish apple pie. “Something wonderful, and with
substance!”
So, I just want people to see me there in that casket with a fork in my hand and I want them to
wonder “What’s with the fork?” Then I want you to tell them: “Keep your fork…the best is yet
to come”.
The Rabbi’s eyes welled up with tears of joy as he hugged the young woman good-bye. He
knew this would be one of the last times he would see her before her death. But he also knew
that the young woman had a better grasp of what heaven would be like than many people twice
her age, with twice as much experience and knowledge.
She KNEW that something better was coming.
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At the funeral people were walking by the young woman’s casket and they saw the cloak she
was wearing and the fork placed in her right hand. Over and over, the Rabbi heard the question
“What’s with the fork?” And over and over he smiled.
During his message, the Rabbi told the people of the conversation he had with the young woman
shortly before she died. He also told them about the fork and about what it symbolized to her.
He told the people how he could not stop thinking about the fork and told them that they
probably would not be able to stop thinking about it either.
He was right. So the next time you reach down for your fork let it remind you, ever so gently,
that the best is yet to come. Friends are a very rare jewel, indeed. They make you smile and
encourage you to succeed. They lend an ear, they share a word of praise, and they always want
to open their hearts to us. Show your friends how much you care. Remember to always be there
for them, even when you need them more. For you never know when it may be their time to
“Keep your fork.”
Cherish the time you have, and the memories you share…being friends with someone is not an
opportunity, but a sweet responsibility.
And keep your fork.
Source – Sent to Sandra Murphy by Susana Barnetche, Mexico City
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LISTEN
When I ask you to listen to me and you start giving advice you have not done what I asked.
When I ask you to listen to me and you begin to tell me why I shouldn't feel that way, you are
trampling on my feelings.
When I ask you to listen to me and you feel you have to do something to solve my problems, you
have failed me, strange as that may seem.
Listen! All I asked was that you listen not talk or do - just hear me. Advice is cheap: 10 cents
will get you both Dear Abby and Billy Graham in the same newspaper. And I can do for myself;
I'm not helpless. Maybe discouraged and faltering, but not helpless.
When you do something for me that I can and need to do for myself, you contribute to my fear
and weakness.
But, when you accept as a simple fact that I do feel what feel, no matter how irrational, then I
can quit trying to convince you and can get about the business of understanding what's behind
this irrational feeling. And when that's clear, the answers are obvious and I don't need advice.
Irrational feelings make sense when we understand what's behind them.
Perhaps that's why prayer works, sometimes, for some people because God is mute, and he
doesn't give advice or try to fix things. "They" just listen and let you work it out for yourself.
So, please listen and just hear me. And, if you want to talk, wait a minute for your turn; and I'll
listen to you.
Anonymous
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Healing
lf you feel safe, you will trust; If you trust,
you will share, You will express your feelings; If you express your feelings, you will
discover yourself,
If, you discover yourself
You will heal.
- Anonymous
Sufi Tale
A stream was working itself across the country, experiencing little difficulty. It ran
around the rocks and through the mountains. Then it arrived at a desert. Just as it had
crossed every other barrier, the stream tried to cross this one, but it found that as fast as
it ran into the sand, its waters disappeared. After many attempts it became very
discouraged. It appeared that there was no way it could continue the journey.
Then a voice came in the wind. "If you stay the way you are you cannot cross the sands, you
cannot become more than a quagmire. To go further you will have to lose yourself."
"But if I lose myself," the stream cried, "I will never know what I'm supposed to be."
"Oh, on the contrary," said the voice, "if you lose yourself you will become more than you ever
dreamed you could be."
So the stream surrendered to the drying sun. And the clouds into which it was formed were
carried by the raging wind for miles. Once it crossed the desert, the stream poured down from
the skies, fresh and clean, and full of the energy that comes from storms.
Even though vulnerability is frightening at times, it can lead to new possibilities for us.
Specifically, the process of meeting others with a deep sense of openness will place us in a
unique position to achieve greater self-awareness by encountering new, previously hidden
parts of ourselves.
“If I can stop one heart from breaking – I shall not live in vain.”
“If I can ease one life that’s aching or ease someone’s pain – I shall not live in vain.”
- Emily Dickinson
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A TRUE STORY OF COURAGE AND LOVE
Walking down a path through some woods in Georgia in 1977, I saw a water puddle ahead on
the path. I angled my direction to go around it on the part of the path that wasn't covered by
water and mud. As I reached the puddle, I was suddenly attacked!
Yet I did nothing for the attack was so unpredictable and from a source so totally unexpected. I
was startled as well as unhurt, despite having been struck four or five times already. I backed up
a foot and my attacker stopped attacking me. Instead of attacking more, he hovered in the air on
graceful butterfly wings in front of me. Had I been hurt, I wouldn't have found it amusing, but I
was unhurt, it was funny, and I was laughing. After all, I was being attacked by a
BUTTERFLY!!
Having stopped laughing, I took a step forward. My attacker rushed me again. He rammed me in
the chest with his head and body, striking me over and over again with all his might, still to no
avail. For a second time, I retreated a step while my attacker relented in his attack. Yet again, I
tried moving forward. My attacker charged me again. I was rammed in the chest over and over
again. I wasn't sure what to do, other than to retreat a third time. After all, it's just not everyday
that one is attacked by a butterfly. This time, though, I stepped back several paces to look the
situation over. My attacker moved back as well to land on the ground.
That's when I discovered why my attacker was charging me only moments earlier. He had a mate
and she was dying. She was beside the puddle where he landed. Sitting close beside her, he
opened and closed his wings as if to fan her. I could only admire the love and courage of that
butterfly in his concern for his mate. He had taken it upon himself to attack me for his mate's
sake, even though she was clearly dying and I was so large. He did so just to give her those extra
few precious moments of life, should I have been careless enough to step on her.
Now I knew why and what he was fighting for. There was really only one option left for me. I
carefully made my way around the puddle to the other side of the path, though it was only inches
wide and extremely muddy. His courage in attacking something thousands of times larger and
heavier than himself just for his mate's safety justified it. I couldn't do anything other than reward
him by walking on the more difficult side of the puddle. He had truly earned those moments to
be with her, undisturbed. I left them in peace for those last few moments, cleaning the mud from
my boots when I later reached my car.
Since then, I've always tried to remember the courage of that butterfly whenever I see a huge
obstacle facing me. I use that butterfly's courage as an inspiration and to remind myself that good
things are worth fighting for.
Source - Unknown
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An Elephant in the Room
There's an elephant in the room. It is large and squatting, so hard to get around it. Yet we
squeeze by with "How are you? " and "I'm fine” and a thousand other forms of trivial chatter.
We talk about the weather; we talk about work.
We talk about everything else - except the elephant.
We all know it is there.
We are thinking about the elephant as we talk.
It is constantly on our minds.
For you see, it is a very big elephant. But we do not talk about the elephant in the room.
Oh, please, say her name.
Oh, please, say "Barbara" again.
Oh, please, let's talk about the elephant. For if we talk about her death, Perhaps we can talk about
her life. Can I say "Barbara " and not have you look away?
For if I cannot, you are leaving me alone .... in a room .... with an elephant.
- By Terry Kettering
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Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blew.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain.
When you awaken in morning’s hush,
I am the swift uplifting rush….
Of quiet birds in circles flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry.
I am not there. I did not die.
- Anonymous
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Dear God,
So far today, I've done alright.
I haven't gossiped, lost my temper, been greedy or grumpy, been nasty, selfish or
overindulgent.
I'm very thankful for that. But in a few minutes, God, I'm going to get out of bed. And from
then on, I'm probably going to need a lot more help.
AMEN
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Don’t
Don’t tell me that you understand.
Don’t tell me that you know.
Don’t tell me that I will survive.
How I will surely grow.
Don’t tell me this is just a test.
That I am truly blessed,
That I am chosen for this task,
Apart from all the rest.
Don’t come at me with answers
That can only come from me,
Don’t tell me how my grief will pass
That I will soon be free.
Don’t stand in pious judgment
Of the bonds I must untie,
Don’t tell me how to suffer,
And don’t tell me how to cry.
My life is filled with selfishness,
My pain is all I see,
But I need you, and I need your love,
Unconditionally.
Accept me in my ups and downs,
I need someone to share,
Just hold my hand and let me cry,
And say, “My friend, I care.”
- Anonymous
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THE RIGHT TO GRIEVE
"I know that in honoring the grieving process, I am honoring the thing I have lost and the
heart within me that needs to heal. "
However valid the truth that tragedy is opportunity disguised as loss, it does not ease the pain of
that loss. Before we can accept the hidden blessings that loss may bring, we must first go though
the process of grief, allowing ourselves to feel and deal with our pain. This is both practical and
healthy. Since grief is the new companion that will be with us for a while, it is to our advantage
to get to know it. By surrendering to our grief and allowing it to take us by the hand as a friend
and teacher, we are letting it work strange magic on us in deep, unknowable ways. The healing
process following loss is not quick and easy; Band-aid and a kiss won't take care of this deep
psychic wound. We have to let ourselves trust the long and arduous process of shock, denial,
numbness, despair, and finally acceptance that is common to all survivors of loss. But the angels
assure us that as painful and even hopeless as things may seem, healing is taking place, quietly
under the surface, and that one day we will discover, as if by a miracle, that we are ready to
laugh again, love again, live again.
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Humorous Quotes
This wallpaper is terrible! One of us has to go! – Oscar Wilde’s last words
Sometimes a laugh is the only weapon we have. – Roger Rabbit
I don’t want to gain immortality through my films. I want to gain immortality through not dying.
– Woody Allen
You no longer die in the hospital, you merely experience “negative patient outcome”. – Bob
Ross
Someone asked, “Did you have colon cancer?” and I said, “Well, mine was a bit different; I had
cancer of the semi-colon.” – Steve Allen
If you can find humour in anything, you can survive it. – Bill Crosby
Either I’m dead or my watch has stopped. – Groucho Marx’s last words
As I left the doctor’s office the nurse put an envelope in my hand and said, “This isn’t a real
prosthesis, but slip it into your bra and you’ll look a little more balanced.” In the car, I opened
the envelope, extracted a small wad of cotton, and shouted, “My God! I’ve got bigger dust balls
under by bed that this!” – Erma Bombeck
Source – “The Courage To Laugh” Alan Klein
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HOSPICE PALLIATIVE CARE
WHAT IS PALLIATIVE CARE?
Palliative Care/Hospice is a compassionate support system that focuses on providing comprehensive
and cocoordinated care to patients with a life threatening illness and their family members. Palliative
Care addresses the diverse physical, psychological, social and spiritual needs that accompany the
dying process. The program is designed to assist patients and their families affected by a life
threatening illness when comfort rather than cure becomes the primary goal.
The Palliative Care/Hospice Program is designed to:
•
•
•
•
•
•
Reinforce the goal of care.
Focuses on what can be done.
Emphasize relief from pain and administers adequate pain medication to control systems.
Address symptoms that limit the quality of life.
Provide support in responding to questions that patients and family members may have.
Provide continued support to the family after the death of a loved one.
The Palliative Care Program is designed to include you and your family in the decision making
in regards to care provided in the hospital and at home.
THE PALLIATIVE CARE TEAM
The Palliative Care Team consists of the family and specially trained physicians, nurses, social
workers, clergy, physiotherapists, dieticians, pharmacists, and trained volunteers. This multidisciplinary health care team works in collaboration with the patient and their family members to
provide assistance and meet individual needs.
ADMISSION TO THE PROGRAM
Admission to the program is arranged through the Palliative Care Cocoordinator. Recognition of the
need for palliative care may come from the physician, health care providers, patient, family or
friends. If you have a family member in need of pain and symptom management, Palliative Care
support is available.
WHAT DOES PALLIATIVE CARE PROVIDE?
•
•
•
•
•
•
Expert medical care to help with pain and other symptoms.
Emotional support.
Spiritual support.
Trained volunteers to visit with clients.
Sympathetic listeners who can talk about and hear about dying.
Ongoing bereavement support after the death of a loved one.
Palliative Care is about dignity and respect. It is about the quality of life in the final stages.
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WHAT CAN YOU DO TO HELP?
Everyone has a right to quality care and a responsibility to advocate for it when approaching the end
of life. Here are some ways in which you can assist in your community:
•
•
•
•
You can be an advocate for effective Palliative Care.
You can volunteer your time to support the society.
You can participate in training workshops.
You can contribute your talents and provide financial assistance to assist the society in its
goals and objectives.
Source – Strait Richmond Palliative Care Society.
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CERTIFICATE OF PARTICIPATION
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Provincial Certificate of Participation
Each volunteer who completes all modules in the Provincial Hospice Palliative Care Volunteer
Training Program will receive the Provincial Certificate of Participation. Sample enclosed
following bibliography section. Template for certificate on diskette included with this manual
Instructions for Use
Insert name of volunteer and up to two signitures from the district.
Upon completion of each volunteer training program, compile a list of names of all volunteers
receiving a certificate and send list to:
Lisa Houghton
Cancer Care Nova Scotia
1278 Tower Road
Room 571, Bethune Building
Halifax, Nova Scotia
B3H 2Y9
Any questions regarding the certificate can be directed to:
Lisa Houghton
Phone: (902) 473-7375
Email: [email protected]
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BIBLIOGRAPHY AND REFERENCES
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Bibliography for the Resource Kit
Volunteer Resource Management
Association for Volunteer Administrators (2001), Universal Declaration on the Profession of
Leading and Managing Volunteers. Toronto.
Community Services Council, Volunteer Centre (1986), Working Together In Harmony:
Volunteer/Management/Union Guidelines. St. John’s, Newfoundland and Labrador.
Community Services Council, Volunteer Centre, Making the Most of Volunteer Resources
Training Program. St. John’s, Newfoundland and Labrador.
Ellis, S.J. (1996). From the Top Down: The Executive Role in Volunteer Program Success.
Revised edition. Philadelphia, PA: Energize, Inc.
International Association for Volunteer Effort (2001). Universal Declaration on Volunteering.
Netherlands: 17th IAVE World Conference.
Johnstone, G. (1999). Management of Volunteer Service in Canada: The Text. Ontario: (JTC),
Inc.
Graff, L.L (1993). By Definition: Policies for Volunteer Programs. Ontario: Volunteer Ontario.
McCurley, S. & Lynch, R. (1996). Volunteer Management: Mobilizing all the Resources of the
Community. Illinois: Heritage Arts.
Newton, K & Mills, L. (2000). Taking Care: Volunteer Standards. Nova Scotia Hospice and
Palliative Care Association.
Province of Newfoundland and Labrador, Department of Education. (2000) Volunteers a
Growing Need: Community Access Program Manual. Newfoundland and Labrador.
Rothstein, J. & Rothstein M. Caring Community: A Field Book of Hospice Palliative Care
Volunteer Service. British Columbia: British Columbia Hospice Palliative Care Association.
Vinyard, S. (1988). Evaluating Volunteer Programs and Events. Illinois: Heritage Arts.
Volunteer Canada (2001). Canadian Code for Volunteer Involvement. Ontario.
Volunteer Canada (2001). A Matter of Design: Job Design theory and application to the
Voluntary Sector. Ontario.
Volunteer Canada (2000). Taking Care: Screening for Community Support Organizations.
Ontario.
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
June 2003
438
Volunteer Canada (1998). Volunteer Management Intensive. Ontario.
Volunteer Vancouver (1990). Volunteers: How To Find Them, How To Keep Them. British
Columbia.
Hospice/Palliative Care
Canadian Hospice and Palliative Care Association (2002). A Model to Guide Hospice Palliative
Care: Based Upon National Norms of Practice. Ottawa, Ontario.
Canadian Hospice Palliative Care Association and Canadian Association for Community Care
(1998). Training Manual for Support Workers in Palliative Care. Ottawa, Ontario.
Cancer Cares Nova Scotia (2001). Report on the Palliative Care Roundtable.
Cape Breton Health Care Complex (1994) Volunteer Handbook.
Eastern Shore Palliative Care Association (n.d.). Volunteer Training Manual.
Island Hospice Association (1999). Palliative Care Manual.
Hospice Association of Ontario (2002). Visiting Volunteer Training Manual. Ontario.
Klein, A. (1998). The Courage to Laugh. New York: Penguin Putnam Inc.
Markay, K. (1980). Volunteers in Palliative Care. New York: Arno Press.
Rothstein, J & Rothstein, M. (1997). The Caring Community: A Field book for Hospice and
Palliative Care Volunteer Services. British Columbia: British Columbia Hospice and Palliative
Care Association.
Senior Care (1992). Palliative Care: Visiting Homemaker Training Program. North York,
Ontario.
Victoria Hospice Society (1995). Palliative Care for Home Support Workers and Volunteers.
Victoria, British Columbia.
Other Resources Volunteer Management
Campbell, K.N. & Ellis, S.J. (1995). (HELP) I - Don’t - Have - Enough - Time Guide to
Volunteer Management. Philadelphia, PA: Energize, Inc.
Crowe, R. (1994). Resource Kit For Interviewing Volunteers. Vancouver: Volunteer Vancouver.
Ellis, S.J. (1996). The Volunteer Recruitment (And Membership Development) Book.
Philadelphia. PA: Energize, Inc.
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
June 2003
439
Ellis, S.J. & Noyes, K.H. (1981). No Excuses: The Team Approach to Volunteer Management
Philadelphia PA: Energize, Inc.
Johnstone, G. & Waymire, J.V. (1992). What if.....A Guide To Ethical Decision Making Ontario:
(JTC) Inc.
Lee, J.F and Catagrus, J.M. (1999). What We Learned ( The Hard Way) about Supervising
Volunteers: An Action Guide for Making Your Job Easier. Philadelphia, PA: Energize, Inc.
McCurley, S. & Vinyard, S. (1998). Handling Problem Volunteers: Real Solutions. Illinois:
Heritage Arts Publishing.
McCurley, S. (1988). Volunteer Management Forms. Illinois: Heritage Arts Publishing.
Temper, C. & Kostin, G. (1993). No Surprises: Controlling Risk In Volunteer Programs.
Washington, D.C.: Nonprofit Risk Management Centre.
Volunteer Canada (2001). Volunteer Connections: Creating an accessible and inclusive
environment. Ontario.
Volunteer Canada (2001). Volunteer Connections: New strategies for involving older adults.
Ontario.
Wilson, M. (1976). The Effective Management of Volunteer Programs. Boulder, Colorado:
Volunteer Management Associates.
Journals:
Association for Volunteer Administration, The Journal of Volunteer Administration.
Canadian Administrators of Volunteer Resources, Canadian Journal of Volunteer Resources
Management.
Other Resources Palliative Care
References
Buckman, R. (1998). I Don’t Know What to Say: How to Help and Support Someone Who is
Dying. New York, NY: Vintage Books.
Buckman R. (1992) How to Break Bad News. A Guide for Health Care Professionals. The Johns
Hopkins University Press.
Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative
Care: Based Upon National Principles and Norms of Practice Ottawa, ON.
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
June 2003
440
Canadian Hospice Palliative Care Association, Canadian Association for Community Care
(1998). Training Manual for Support Workers in Palliative Care Ottawa, ON.
Circle of Care (1992) Palliative Care: Visiting Homemakers Training Program North York, ON.
Downing, G.M. (Ed.). (1998). Medical Care of the Dying (3rd ed.). Victoria B.C. Victoria
Hospice Society.
Doyle, D., Hanks G. & MacDonald, N. (Eds.) (1998). Oxford Textbook of Palliative Medicine
(2nd ed.). New York, NY: Oxford University Press.
Ferrell, B.R. & Coyle, N. (Eds.) (2001). Textbook of Palliative Nursing. New York, NY: Oxford
University Press.
Fisher, R., Ross, M.M., & MacLean, M.J. (2000). End of Life: Guide for Seniors. Toronto, ON:
Tri Co Printing Inc.
Frager G. (1999) Pediatric Palliative Care, in Palliative Medicine Secrets, Suresh K. Joishy ed.,
Hanley and Belfus Inc., Philadelphia.
Frager G. (1997) Palliative care and terminal care of children. Child and Adolescent Psychiatric
Clinics of NA, 6:4, 889-909.
Goldman, A. (1998). Care of the Dying Child. Oxford, England: Oxford University Press.
Joishy, Suresh K. (1999). Palliative Medicine Secrets, Philadelphia, PA: Hanley & Belfus, Inc.
Latimer, E. (2001) Miles to Go, Purdue Pharma, Pickering, Ontario.
Latimer, E. (1998) Easing the Hurt, Purdue Pharma, Pickering, Ontario.
Librach L. (1997) The Pain Manual: Principles and Issues in Cancer Pain Management. (Revised
edition). Pegasus Healthcare International.
McCaffery, M. & Pasero, C. (1999). Pain Clinical Manual (2nd ed.), St Louis, MO: Mosby.
Nussbaum, K. (1998). Preparing the Children: Information and Ideas for Families Facing
Terminal Illness and Death. Kodiak, AK: Gifts of Hope.
Pereira, J. & Breura, E. (2001). Alberta Palliative Care Resource, Edmonton, AB: University of
Alberta Press.
Sudbury Regional Palliative Care Association (1997) Essentials of Palliative Care: An
Interdisciplinary Approach, Sudbury, ON.
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
June 2003
441
Victoria Hospice Society, Palliative Care for Home Support Workers Course Information .
Victoria British Columbia.
Wright, L.M. & Leahey, M. (2000) Nurses and Families: A Guide to Family Assessment and
Intervention (3rd Ed), Philadelphia: F. A. Davis Company.
Worden. J.W. (1991) Grief Counseling and Grief Therapy (2nd ed), New York: Springer
Publishing.
Wolfelt, A. D. (1992) Understanding Grief: Helping Yourself Heal. Philadelphia: Accelerated
Development Inc.
Bowlby, J. (1980) Attachments and Loss: Loss, Sadness and Depression (Vol. III). New York:
Basic Books.
Fitzgerald, H. (1994) The Mourning Handbook. New York: Fireside.
Parkes, C. & Markus, A. (1998) Coping with Loss. London: BMJ Publishing.
Rando, T. (1998). Grieving: How to go on Living When Someone You Love Dies. New York:
Lexington Books.
Videos *
Casey House, with June Callwood
Dealing With Death and Dying, with Joy Ufema, R.N., M.N. Thanatologist
The Evolution of Hospice and Palliative Care, with Dame Cicely Saunders
An Early Fall
Living With Dying
My Gift: My Self - A Step - By - Step Video Guide to Becoming A Hospice Volunteer,
(7 videos), by Joanne Chitwood Nowack, R.N., Eastport, Indiana: Pacific Video Production
Saying Goodbye, Series. Titles: - A Grief Shared - Magic Lantern Communications
- A Home Alone
- A Promise Broken
- The First Snow Fall
- Thunder in My Head
Soul Pain
The Last Days of Living, National Film Board
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
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The Pitch of Grief
* This is a list of videos that were suggested or recommended by the Volunteers In Palliative
Care Initiative Project Team. In most caseS there was no information given on the source of the
video. See below for video distribution agencies where some of the videos may be available or
where you may obtain other resource videos.
Aquarius Productions Inc.
Mass. USA
www.aquarius.com
National Film Board of Canada
www.nfb.ca/nfbstore
Magic Lantern Group
USA and Canada
www.magiclanterngroup.com
Centering Corporation
Nebraska, USA
www.centering.org
Web Sites for Volunteer Resource Management
Government
Canadian Rural Partnership
www.rural.gc.ca
Voluntary Sector Initiative
www.vsi-isbc.ca
Nova Scotia Municipal Relations
www.gov.ns.ca/snsmr
Professional Associations
Association for Volunteer Administration - AVA (American)
www.avaintl.org
Canadian Administrators of Volunteer Resources - CAVR
www.cavr.org
Professional Administrators of Volunteer Resources - (PAVR-O) - Ontario
www.pavro.volunteer.ca
Volunteer Canada
www.volunteer.ca
Resources/Newsletters
Canadian Centre for Philanthropy
www.ccp.ca
Non-profits Canada
www.nonprofitscan.ca
Capacity Builders - Ontario Community
Nova Scotia Community Organizations
N.S. Provincial Hospice Palliative Care Volunteer Resource Manual
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Support Association
www.capacitybuilders.com
Network
www.nsnet.org
Charity Village
www.charityvillage.com
Points of Light Foundation (American)
www.pointsoflight.org
Coalition of National Voluntary Organizations
www.nvo-onb.ca
Volunteer BC
www.volunteerbc.bc.ca
Community Services Council &
Volunteer Centre of Newfoundland and Labrador
www.envision.ca
Volunteer Canada
www.volunteer.ca
Energize Inc. (Susan Ellis)
www.energizeinc.com
Volunteer Opportunities Exchange
www.voe-reb.org
Johnstone Training and Consulting
www.jtcinc.ca
Volunteer Today
www.volunteertoday.com
Linda Graff and Associates Inc.
www.lindagraff.ca
Web SiteS for Palliative Care
Government
Health Canada: Secretariat on Health and End of Life
www.hc-sc.gc.ca/english/care/palliative.html
Professional Associations
Canadian Home Care Association
www.cdhomecare.on.ca
British Columbia Hospice and Palliative
Care Association
www.hospicebc.org
Canadian Hospice and Palliative Care Association
www.cpca.net
Resources/Newsletters
Bereavement: A Magazine of Hope and Healing
www.bereavementmag.com
Compassion Books
www.compassionbooks.com
Centering Corporation
www.centering.org
Companion Press
www.centerforloss.com
Living Lessons
www.living-lessons.org
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