Loss of a child to cancer – how to mitigate parents’ psychological distress? Ulrika Kreicbergs, RN, PhD Long-term consequences of losing a child Hospitalization for mental illness among parents after the death of a child. Li J. et al. N Engl J Med. 2005;352:1190-96.    Bereaved mothers and fathers have an increased risk for hospitalization for mental illness compared to non-bereaved parents Bereaved mothers are at greater risk than bereaved fathers Bereaved mothers are at greater risk the first year Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Li J.et al. Lancet 2003;361:363-367   Mothers are at risk for unnatural death throughout the follow-up of 18 yrs, with the highest risk the first 3 yrs after bereavement Fathers are at risk for unnatural death the first 3 yrs Parents who lost a child to cancer in Sweden between 1992 and 1997 Parents of 368 randomly selected children 665 bereaved parents 659 nonbereaved parents 104 not eligible 50 refused to participate 39 not reachable 561 eligible 23 not reachable 30 refused to participate 59 failed to return questionnaire 191 fathers 251 mothers 7 not stated 449 participated 80% 113 failed to return questionnaire 457 191 fathers 266 mothers participated (69%) Anxiety and Depression Epidemiological Studies measure of Depression (CES-D) Spielbergers Trait measure from the State-Trait Anxiety Inventory 50 50 45 40 40 35 35 30 Depression (above 90th percentile) 45 30 RR 1.7(1.1-2.5) RR 1.0(0.6-1.6) 25 20 15 10 5 0 4-6 yr RR 1.9(1.3-2.8) RR 1.0(0.6-1.6) 25 20 15 10 5 0 7-9 yr Contr ols Kreicbergs U. et al. Psychological Medicine 2004;34:1431-1441 4-6 yr 7-9 yr Controls Symptoms and suffering at the end of life in children with cancer. Wolfe J. et. al. N Engl J Med. 2000 Feb 3;342(5):326-33.    89 % of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea Treatment was successful only in one of three for those with pain Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care Care related stressors Experienced Affected Pain could not be relieved 46% 111/196 (57%) Difficult moment of death 32% 78/138 (57%) Negligent care of my child 46% 81/198 (41%) Insufficient contact with health care staff after my child’s death 43% 62/187 (33%) Kreicbergs U. et al. J Clin Oncol 2005; 23;(36):9164-71 Importance of communication Communication About Prognosis Between Parents and Physicians of Children With Cancer: Parent Preferences and the Impact of Prognosis Information. Mack J.,et. al. JCO 2006;24:5265-70   A majority (87%) of parents want as much information as possible Although more than a third found the information very upsetting, still they wanted even more information Pediatric Palliative Care.   Himelstein B.,et.al. NEJM 2004;350:1752-62 Dying children aware of imminent death & experience fear, loneliness and anxiety Dying children need honest answers Lack of awareness – or very short .. Emotional Intellectual •  112 parents (26%) reported short awareness 195 parents (45%) reported short awareness  57 of 249 mothers (23%) • 110 of 247 mothers (45%)  55 of 187 fathers (29%) • 85 of 186 fathers (46%) Valdimarsdottir U. et al. Lancet Oncol. 2007;8:706-14 Talk or not talk about death with the child? 300 250 200 Talk 150 Regret talking No talk 100 Regret not talking 50 0 Kreicbergs U. et al. N.Engl.J.Med. 2004;351(12):1175-86 “He liked the movie ’House of Angels’. The last day he was alive he stopped the movie when Erik was in the coffin and said he would like to have a pillow like that one” Assessment of grief “Do you think that you have worked through your grief?” “not at all,” “somewhat” / “a lot”, ”completely.” No Yes 100% 90% 80% 70% Percent 60% 50% 26% 40% 30% 20% 10% 0% no little a lot completely Kreicbergs U. et al. Clin Oncol. 2007;25:3307-12 and Lannen P. et al. J Clin Oncol. 2008 Dec 20;26(36):5870-6 Unresolved grief increases the risk of Worked through grief (no/a little) 100 Gender Fathers Mothers 80 Fathers Mothers RR, (95% CI) RR, (95% CI) Anxiety 4.9 (2.2-10.8) 3.6 (2.0-6.5) Depression 3.9 (1.6-9.6) 2.2 (1.1-4.0) Sleeping difficulties 6.7 (2.5-17.8) 1.7 (0.7-3.8) Sick-leave 2.1 (0.9-5.0) 2.1 (1.2-3.5) 60 40 20 0 4 5 6 7 8 9 Time after loss (years) Lannen P. et al. J Clin Oncol. 2008 Dec 20;26(36):5870-6 Professional support improves the grief process  Staff took initiative to counseling Fathers: RR 1.5 Mothers: RR 1.2   95% CI (1.2-1.8) 95% CI (1.1-1.4) Psychological support Fathers: RR 1.4 95% CI (1.0-.8) Mothers: RR 1.3 95% CI (1.1-1.6) Closure sessions Fathers: RR 1.3 Mothers: RR 1.4 Kreicbergs U. et al. Clin Oncol. 2007;25:3307-12 95% CI (1.0-1.8) 95% CI (1.0-1.9) What can staff do to help  Improve pain and symptom management  Be present at the child’s moment of death  Promote open and honest communication  Encourage parents to talk about death with their child  Initiate counseling for parents during the palliative phase Acknowledgements Participating parents Gunnar Steineck, MD, PhD Unnur Valdimarsdóttir, PhD Erik Onelöv, MSc, statistician Ulla-Britt Rittvall, interviewer Pamela Surkan Jan-Inge Henter, MD, PhD Olle Björk, MD, PhD Joanne Wolfe MD, MPH Patrizia Lannen The loss of a brother or sister to cancer Psychological adjustment of siblings of children with cancer: a systematic review. Alderfer MA.,et. al. Psycho-Oncology 2010;19:789-805    Siblings do not experience elevated mean rates of psychiatric disorders A significant subset experience post traumatic stress symptoms, negative emotional reactions and poor QoL Distress decreases over time since loss Nation-wide follow up of siblings 2 to9 years following the loss of a brother or sister to cancer  Increased risk of psychological morbidity  Men at risk  Less likely to have university degree Comfort from listening  To listen is to listen to what is said as well as to what is not said  To listen is to think before you respond  To listen is to understand that an answer is not always wanted  To listen well is often enough of an answer by J. Spinetta Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning? Goodenough B. et. al. Psychooncology. 2004 Nov;13(11):779-91.    Long-term bereavement and psychological outcomes for parents, as a function of the sex of the parent and the place of the child's death: home versus hospital Fathers reported significantly higher levels of depression, anxiety and stress when the child died in hospital rather than at home. In mothers place of death were not reflected in psychological outcomes but were more closely tied to symptoms of pathological grieving Location of care - death Looking Beyond Where Children Die: Determinants and Effects of Planning a Child's Location of Death. Dussel V. et. al. J Pain Symptom Manage. 2008 Jun 5.     Families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD 88 parents (63%) planned the child's LOD and 97% accomplished their plan. Parents who planned were more likely to feel very prepared for the child's end of life Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among non-home deaths Guidelines for assistance to terminally ill children with cancer – A report from the SIOP working committee. Masera G. et al. 1999;32:44-48     Team decision regarding palliative care Possibility for child- family to stay at home Keep in touch with child - family Bereavement counseling Care of terminally ill children with cancer. Nitschke R. Medical and Pediatric Oncology 2000; 34:268-270    Final Stage Conference (FSC) include children all ages Initiated by the physician together with a nurse or assistant Most families report no psychological disturbance “ To deal with this news requires a change in perception for everyone involved. This effort can succeed only if the loss is accepted as a reality and if it is recognized that an adjustment to the psychological pain of loss is possible.” How to discuss death with a dying child: can a story help? Auvrignon A. et al. Bull Acad Natl Med. 2008 Feb;192(2):393-400; discussion 401-3.   The story has been experienced as something positive and it has helped other parents to talk with their children Health care professionals should lend its full support to families who wish to engage in this dialogue with their children Talking with families when their children are dying.       Time Quite and private Families agenda Non technical language Emotionally responsive Maintaining hope - while being honest Kuttner L. Med Princ Pract 2007;16(suppl 1)16-20 Predictors: that child cared for and dying at home • • • Child aware of his or her imminent death Parents informed that the child’s illness incurable Parental awareness intellectual & emotional