From the associate editor’s desk By Ms. Lou Andersson, RN, MA, and Dr. Cyril Danjoux, MD, DMRT, FRCPC It has always been the intention of the Rapid Response Radiotherapy Program to provide our readers with the latest information on medical and psychological care of cancer patients based on the most recent knowledge and experience of cancer care providers. Our August issue features our important partner in care – pharmacy. The insert prepared by Kim Stefaniuk, BSP, gives helpful information on medication and pharmacy services. She also adds an article on Toronto Sunnybrook’s Pharmacy Services and Toronto Sunnybrook Regional Cancer Centre’s participation in providing medication to a Third World country. You will find Dr. Berry’s article on Informed Decision Making for Palliative Therapies covers some puzzling problems we all encounter in palliative care. Also, Part One – The Transformation from Tragedy into Grace in Terminal Illness by Dr. Mary Vachon; Dr. Hayter’s Plants, Poisons and Potions: Drug Treatment for Cancer; and Dr. Rebecca Wong’s Research Corner (with Dr. May Tsao as co-author) on brain metastases are a welcome read. Enjoy! TSRCC pharmacy services By Kim Stefaniuk, BSP, Pharmacist, Toronto Sunnybrook Regional Cancer Centre The pharmacy at the Toronto Sunnybrook Regional Cancer Centre provides a range of services to meet the unique needs of cancer patients. Specially-trained technicians prepare chemotherapy safely and accurately. A small retail pharmacy fills prescriptions for oral chemotherapy and supportive care medications; also available is a selection of over-the-counter products designed especially for cancer patients. In the warm, friendly atmosphere of the new pharmacy, patients can consult with the pharmacy team to address medication-related issues. Experienced staff can help smooth the complicated drug insurance process, look after drugs for over 70 clinical trials, and help manage the many symptoms associated with cancer and its treatment. Our team of highly-trained pharmacists works closely with physicians, nurses, and other members of the health care team to ensure optimal drug therapy outcomes. Clinical pharmacists can be found in the pain clinic and the chemotherapy suite to help manage pain, symptoms, and other drug-related issues. Pharmacists are also a valuable drug information resource for questions ranging from monoclonal antibodies to herbal products. Some of our pharmacists are actively involved in teaching students and residents; they are also awardwinning authors, invited speakers, and poster presenters at local, national, and international events. TSRCC’s pharmacy is open 0830-1700 Monday to Friday. The team is keen, dedicated, eager to help, and has a reputation for artistic, musical, and culinary prowess! Pharmacy can be reached at (416) 480-4671. The Newsletter of the Rapid Response Radiotherapy Program of Toronto Sunnybrook Regional Cancer Centre Vol. 4, Issue 3, August 2002 Editor: Dr. C. Danjoux Associate Editors: Ms. L. Andersson, Dr. E. Chow, Dr. R. Wong Assistant Editor: Ms. L. Holden Consultant: Dr. J. Finkelstein Advisors: Dr. S. Berry, Dr. A. Bezjak, Dr. M. Branigan, Dr. C. Hayter, Dr. J. Kamra; Dr. L. Librach, Dr. D.A. Loblaw, Dr. E. Szumacher, Dr. M. Vachon Editorial and Financial Manager: Ms. D. Nywening Toronto Sunnybrook Regional Cancer Centre, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5 Tel: (416) 480-4998, Fax: (416) 217-1338 E-mail: [email protected] Website: http://www.tsrcc.on.ca/ RRRP.htm Produced by Pappin Communications Pembroke, Ontario www.pappin.com In this issue: TSRCC pharmacy services; The transformation from tragedy into grace in terminal illness - part one; Historical Vignette: Plants, poisons and potions: Drug treatments for cancer; TSRCC pharmacy assists Third World countries; Informed decision-making in palliative care; Research Corner. Insert - Accessing medication The transformation from tragedy into grace in terminal illness – part one By Mary L.S. Vachon, RN, PhD Kathleen Dowling Singh, PhD, a transpersonal psychologist, has worked in hospice for many years. In The Grace in Dying: How We are Transformed Spiritually as We Die (Harper San Francisco, 1998), she states that the period of dying is one which begins with a personal sense of tragedy with a terminal prognosis and culminates, after the arduous process of psychospiritual transformation, in an experience of grace with the final dissolution of personal consciousness. She speaks of death as being an experience in which “higher energies filter in”. Singh notes that wisdom traditions have acknowledged this phenomenon for millennia. In the Middle Ages, Ars Moriendi, the “Art of Dying” set forth a cartography of dying in Christian religious terms. In the East, Padmasambhava gave a precise map of the dying process in the Bardo Thodol, The Tibetan Book of the Dead, in the eighth century. Singh’s Psychospiritual Journey of the Dying Process draws on many spiritual traditions. Her model includes phases of Chaos, Surrender and Transcendence. The phases are tied to points on the Karnofsky Performance Scale. This article will describe the phase of Chaos. The next issue of Hot Spot will discuss the next two phases. Singh contrasts the travail of death with that of birth. Death “is hard work for every interrelated, interpenetrating facet of our being: physical, emotional, psychological, and spiritual. The developmental task placed before us in dying is the task of finding the courage to be in the face of a lonely death. The challenge of the dying process is the challenge of living while dying, rather than dying while living” (p. 167). Singh notes that Kübler-Ross’s five-stage theory relates only to the reaction of the “mental ego forced to confront the death of the body in which it presumes itself to reside” (p. 168). Singh’s model suggests that the stages of dying also involve psychospiritual transformation deep into transpersonal levels. “Transformation occurs through subtraction. We begin, as we heal successive dualities, as we approach deeper and deeper levels of integration, to eliminate the nonessential. As we participate in the process, we find paradoxically, that the subtraction adds, that through the exclusion of the nonessential from our attention, we create movement and we become more inclusively essential” (p. 90-91). The stages she describes are not discrete; they are whirling aspects of the self in the grip of a profound transformation. The first phase of Chaos is characterized by turbulence. continued on page 4... Historical Vignette: Plants, poisons and potions: Drug treatments for cancer By Charles Hayter, MA, MD, FRCPC, Radiation Oncologist, TSRCC Physicians have always hoped for the development of effective drug treatments for cancer. Dioscorides, a first century Roman army surgeon, wrote the first textbook of medical botany and recommended an extract of Colchicum lingulatum (colchicine) for treatment of tumours. In the nineteenth century, doctors experimented with compounds of lead and arsenic, some of which showed promise against cancer. The emergence of medical oncology, a field specializing in systemic therapies for cancer, is one of the major developments in the modern cancer system. Buoyed by the early twentieth century discoveries of chemical treatments for infectious, metabolic, and deficiency diseases, doctors envisaged effective drug treatments for cancer. These dreams began to become reality through the serendipitous observation that mustard gas used as a chemical weapon in WWI caused damage to bone marrow cells. The first promising human clinical trials of nitrogen mustard took place at Yale in the early 1940s. The development of experimental animal tumour systems allowed the testing of many compounds for anti-cancer activity, and from 1950 to 1970 many potentially useful drugs were discovered. As historians have pointed out, many of these drugs were derived from research programs with different objectives in mind – methotrexate from nutrition, cortisone from arthritis, and actinomycin-D from TB research. Subsequent trials showed that combinations of these drugs could actually cure certain forms of cancer even when metastatic – most notably, choriocarcinoma, leukemias, lymphomas, and testicular cancers. The observation that chemotherapy could cure patients with advanced cancer led to speculation that it might enhance the probability of cure in patients who had apparently localized disease, but who were at high risk for metastases. In the 1960s and 70s chemotherapy began to be used as an “adjuvant” to local treatments such as surgery or irradiation. Clinical trials in breast cancer showed that the risk of relapse and death could be significantly reduced by the use of adjuvant chemotherapy. Several useful chemotherapy agents have been developed from plants: vincristine from periwinkle (depicted in illustration), etopiside from the May-apple root, and taxol from the yew tree. Such discoveries are in keeping with the ancient medical tradition of obtaining remedies from plants that dates back to Dioscorides. TSRCC pharmacy assists Third World countries By Kim Stefaniuk, BSP, Pharmacist, Toronto Sunnybrook Regional Cancer Centre For several years now, the pharmacy staff at TSRCC have been quietly donating time, money, and medical supplies to Third World countries. In many of these countries, even basic medications are unavailable; what is available may not be easily obtained or paid for. Often people ask what to do with medications they no longer need or when a family member dies and leaves a number of partly-used prescriptions. Canadian laws prohibit reusing medications that have already gone to a patient, but medications that are in good condition, clean, properlystored, and clearly labelled can be a real gift to needy patients in disadvantaged countries. With the exception of refrigerated drugs, the pharmacy at TSRCC is happy to accept donations of these medications or unused medical supplies. Some medications have been sent to various aid groups such as Medical Ministries International. More recently, we have been sending these donations to an American physician, Dr. William Hobbs, who runs a medical outreach clinic in a remote area of Guyana, South America. Dr. Ewa Szumacher, one of TSRCC’s radiation oncologists, has visited Dr. Hobbs’ clinic and seen for herself the desperate need of these people. On a recent visit to Canada and TSRCC, Dr. Hobbs expressed his deep appreciation for the donated medical supplies. “How these people survive is a miracle,” he says. Pharmacy staff collect the medication, remove confidential patient information, and pack the medications for mailing to Dr. Hobbs. Donated clothing and school supplies are also welcome; both Kim Stefaniuk in the pharmacy and Dr. Szumacher have been mailing parcels for the outreach clinic. Dr. Hobbs cited several examples of how the donations have been used to help his patients; the packages do reach him and are immediately put to good use. Here at home, patients and their families derive comfort from knowing their medications will not be wasted, but will instead directly benefit needy people in a very poor country. For further information contact Kim Stefaniuk at (416) 480-4671. The TSRCC pharmacy staff with Dr. Bill Hobbs. Informed decision-making in palliative care By Scott Berry, BSc, MD, MHSc, FRCPC A 45-year-old woman with metastatic breast cancer presents to the bone metastases clinic with a very painful solitary vertebral metastases that has progressed despite several hormonal therapies and previous radiation to the site. Within a short time, she will be assessed by the various team members and offered advice about the relative merits of therapies that might help improve her pain. It is a rather daunting task – someone who is already faced with the stress of having an incurable illness and the distress of pain has to make important decisions with her physicians about what treatment is best for her. Patients coming to see oncologists for palliative anti-cancer therapies want us to help them feel better. As clinicians, we want to ensure that our patients can make an informed decision about their treatment. Informed decision-making about any therapy, including palliative cancer treatments, is a cornerstone of preserving a patient’s autonomy – their ability to live their life according to their own plans and desires. So, how good are we at helping people make informed decisions about palliative therapies? An Australian group has recently published some interesting results from a qualitative study they performed to try and answer this important question (Gattelari et al., JCO, 2002). Consultations with oncologists were taped and analyzed for more than 100 patients presenting for discussion of palliative therapies. The analysis revealed that most patients were well-informed about the aim of treatment and the fact that their disease was incurable. However, they found that there were significant gaps in information provided about prognosis and alternatives to anti-cancer treatment that could have impacted on a patient’s ability to make an informed decision. Empirical research about ethical issues in cancer care like this Australian study is very important. Theoretical musings about the importance of autonomy and informed decision-making are also important, but rather empty if they do not reflect what is happening in the clinic or at the bedside. This study has pointed out some potential gaps in informing patients about palliative therapies that we can consider when we deal with our own patients. This can serve as a foundation for future research to help us be even better at properly informing our patients. Research Corner By May N. Tsao, MD, FRCPC, and Rebecca Wong, MB, ChB, MSc, FRCPC “How would I benefit from whole brain radiotherapy?” a patient with brain metastases asked of her radiation oncologist. It is actually quite humbling how we have difficulty answering this question. While brain radiotherapy for patients with brain metastases is part of standard therapy, the degree of symptomatic benefit it may (or may not) provide remains elusive. Conventionally, treatment outcomes, including survival and local control, are the outcomes used to assess the effectiveness of whole brain radiotherapy. While these outcomes are important, we have come to appreciate that quality of life plays a much bigger role in evaluating the usefulness of treatment, particularly since treatment is palliative in nature. Dr. Vachon – continued from page 2... Chaos involves the five psychological phases enunciated by Kübler-Ross (On Death and Dying. New York: Macmillan, 1969): denial, anger, bargaining, depression and acceptance. In addition, it involves the deeper experiences dying persons may pass through in the course of transformation: the experience of alienation, anxiety, the despair that leads to “letting go,” and the dread of engulfment. Chaos begins with facing the threat of death, goes through a time involving a pattern of living significantly altered by physical decline, and typically comes to a close with the approach of death itself in the nearing death experience. Tumult, conflict, confusion, and emotional suffering characterize Chaos. In the early to middle phases of terminal illness, people experience great and virtually inexpressible anguish. “The will to live bounces against the painful emotions of denial, guilt, fear, depression, loneliness, apathy, and despair. The will to live crashes, over and over, into the disease process itself, engendering turmoil, suffering and confusion” (p. 176). Strong desires and emotions move toward a At the Toronto Sunnybrook Regional Cancer Centre, a study entitled “Quality of Life in Patients with Brain Metastases Treated with a Palliative Course of Radiotherapy” is now open to accrual. This is a prospective study with a sample size of 60 patients and 60 caregivers. Quality of life, using a validated quality of life scale (FACT-BR), will be assessed as well as caregiver agreement with patient quality of life scores. The primary objective of this study is to assess whether there is an improvement in quality of life for patients with brain metastases after a course of palliative radiotherapy (at one month and two months) as compared to quality of life assessments taken while on decadron and before radiation. The secondary objective is to assess whether caregivers serve as valid proxies for the assessment of a patient’s quality of life. Inclusion criteria: 1. histologic or radiographic diagnosis of brain metastases 2. treatment with decadron (12-16 mg per day) for at least 48 hours before the first quality of life assessment 3. whole brain radiotherapy (2000 cGy in five fractions daily) 4. mini-mental scores greater than or equal to 25/30 Exclusion criteria: 1. patients with a single brain metastases eligible for surgical resection 2. inability to read/write English 3. no proxy 4. contraindication for radiation It is with studies such as these, that we would come to gain a better understanding of how we are impacting on our patients’ lives, an essential step towards helping our patients live better with their cancer. For further information, please contact Dr. May Tsao at the Toronto Sunnybrook Regional Cancer Centre (416) 480-4806. Funded by the Toronto Sunnybrook Regional Cancer Research Fund. heaviness and an almost unendurable Mary Vachon, RN, PhD, is a sense of isolation. On the Karnofsky psychotherapist in private practice. Scale, Chaos could be characterized She can be reached at by scores ranging from 100 down to about 40, or even 30%. The turbulence [email protected]. of Chaos begins at different points for different people. It begins at the moment when the The newsletter of the Rapid Response idea of the reality of one’s Radiotherapy Program of Toronto Sunnybrook own rapidly approaching Regional Cancer Centre is published through mortality enters the support of: consciousness. At a level of 50 per cent, almost literally seeing our healthy Abbott Laboratories, Limited functioning diminishing by half, we begin to lose AstraZeneca our accustomed sense of who we are. We can no Aventis longer fulfill the imagined reality of who we were. We no longer have our Elekta “stance” in the world. At Karnofsky levels of 40 to GlaxoSmithKline 30 per cent, often involving incontinence “most people begin to ask Knoll Pharma Inc. themselves, Where is the ‘me’ who had all those Ortho Biotech faces, all those cherished parts to play, all those Purdue Pharma ways of navigating the world? Who am I now?” (p. 178). Theratronics - a division of MDS Nordion Accessing medication By Kim Stefaniuk, BSP, Pharmacist, TSRCC Private Insurance ODB Formulary • Third party insurance pays for drugs according to individual plan • Coverage not guaranteed; some plans follow ODB formulary and may require justification for use of agents outside the formulary • Patient can call insurer with DIN (drug identification number) to check coverage • Co-pay ranges from 0-50% of prescription cost; many have a cap on benefits • Many plans require patients to pay first then submit claim • Prescribing/reimbursement guide, sent to all Ontario physicians and pharmacies • List of quality-assured drug products reviewed for efficacy and interchangeability • Listed drug products are covered (benefits); not comprehensive • Benefits subject to small co-pay for each prescription Ontario Drug Benefit (ODB) • Drug coverage (general listing, limited use, Section 8, nutritional products) with valid health card for the following groups: • Seniors age 65 and over (usually $100 annual deductible) • Patients receiving professional services under Community Care Access Services (home care) with a drug card. Coverage only for duration of services, renewable monthly. Home care is not a drug plan by itself. • Residents of long-term care facilities or homes for special care • Ontario Works or Ontario Disability Support Program assistance • Patients enrolled in Trillium Drug Program a) General Listing • Listed products (formulary section III) require regular prescription only b) Limited Use (LU) • Drugs reimbursed only for specific clinical criteria (formulary section XII) (ie. Celebrex covered for rheumatoid arthritis, but not for antiangiogenesis) • LU prescription pads sent to physicians. Additional forms available at 1-888-234-1365 • Form must be completed in full by physician with appropriate LU code. Codes and forms are audited by ODB. • Without complete LU prescription, patient pays full cost of prescription • LU forms do not confer ODB benefits; patient must be ODB eligible • LU prescriptions provide coverage for up to one year. Abbott Laboratories Leaders in Oncology Partially funded by grants from Amgen Canada Inc. and Abbott Laboratories Non-narcotic refills may be telephoned or written on a regular prescription. c) Section 8 • Individual clinical review for drug product not on formulary or limited use (ie. filgrastim for patients treated with curative intent using myelosuppressive chemotherapy and experiencing persistent neutropenia).(Formulary section VIII) • Patients must be on ODB: Section 8 approval does not confer ODB benefits • Physician must fax letter to ODB (416) 327-7526 requesting drug product coverage with the following information: - Patient name, age, gender, date of birth, OHIP number - Name, strength, dosage form, DIN, and duration of therapy for drug product requested - Reason for use, supporting literature, prior therapy, why formulary agents not appropriate, lab data and other relevant medical information - Name, phone, fax of pharmacy where patient will get prescription - Name, address, fax, CPSO number & signature of requesting physician • Requests reviewed individually (may take several weeks); coverage not assured • If covered, physician receives authorization letter • Coverage NOT retroactive, valid only for dates indicated on letter • If denied, physician receives letter requesting more information or listing reasons for denial. Appeal is possible. • Renewals not automatic. Reapply with updated patient information by faxed letter four weeks before expiry date. • Coverage is Drug Identification Number (DIN) specific; dosage form or strength changes require new letter. Consider requesting multiple DINs for different strengths on initial letter (ie. interferon pens) • Section 8 letter is not a prescription; valid prescription is required d) Nutritional Products (NP) • Covered for ODB-eligible patients with NP form; coverage valid for one year • Covered only if NP is sole source of nutrition (po or tube) - oropharyngeal or gastrointestinal disorders: dysphagia prevents eating - maldigestion/malabsorption/gut failure where food not tolerated - elemental diet as primary treatment of diseases where therapeutic benefit demonstrated Trillium Drug Program • Confers ODB prescription drug benefits to Ontario residents (with valid health card) and members of the immediate family living with applicant • Deductible (payable quarterly) proportional to previous year’s family income • May appeal deductible if financial status changed since last year • Usually processed in four to six weeks • If deductible overpaid, Trillium will reimburse patient • Forms available in any pharmacy • Can be used with private insurance; copay can be applied to Trillium deductible Special Circumstances • Cancer Care Ontario free drug service for oral or some subcutaneous chemotherapy agents only, not supportive care. Access is via Social Work only through regional cancer centre/Princess Margaret Hospital pharmacy • Health Canada Special Access program for non-marketed drugs (613) 941-2108 • Refugees, patients without OHIP or other coverage to be assessed by social work. Community groups or ODB assistance may be possible. • Programs supported by pharmaceutical industry in collaboration with third party payors to facilitate reimbursement • Neupogen care line 1-888-706-4717 for filgrastim • Eprex Assistance Program 1-877-793-7739 for erythropoeitin • Care Line 1-800-363-3422 for interferon Supplement to Hot Spot, the newsletter of the Rapid Response Radiotherapy Program of Toronto Sunnybrook Regional Cancer Centre - August 2002 Accessing medication By Kim Stefaniuk, BSP, Pharmacist, TSRCC Abbott Laboratories Leaders in Oncology Partially funded by grants from Amgen Canada Inc. and Abbott Laboratories
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