Communicating about Prognosis in Families Receiving Paediatric Palliative Care Erin Gaab Ph. D Candidate Health Psychology e. gaab@auckland. ac. nz Supervisors: Prof. Glynn Owens, Prof. Rod Mac. Leod Advisors: Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. Andrew Thompson, Fiona Pienaar, Starship Paediatric Palliative Care Team
George Mark Children’s House www. georgemark. org Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Paediatric palliative care • “the active and total care of the child’s body, mind and spirit, and also involves giving support to the family” –World Health Organisation, 2008 Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Kiwi Children eligible for PPC Disease Ethnicity (%) Place of death Maori 91 (26) Cancer (%) 32 (35) Cardiac Congenital Other (%) (%) 10 (11) 24 (26) 25 (27) Home Hospital (%) 64 (70) 27 (30) European 207 (59) 81 (39) 22 (11) 48 (23) 56 (27) 148 (71) 59 (29) Pacific Islanders 32 (9) 12 (38) 3 (9) 5 (16) 12 (38) 24 (75) 8 (25) Other 18 (5) 5 (28) 2 (11) 5 (28) 6 (33) 11 (61) 7 (39) Total 348 130 (37) 37 (11) 82 (24) 99 (28) 247 (71) 101 (29) Table 1. Number of children (0– 17 yrs) likely to have required palliative care during the period 1996– 1998 by disease group, ethnicity and place of death (Jones, 2002). Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Family-Centred Approach • The death of a child is arguably the most devastating and life-defining event a caregiver may experience. http: //www. cbc. ca/gfx/images/news/photos/2009/06/19/nl-engram-banner-20090618. jpg Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Unhealthy children’s views of death • Frequent hospital visits may allow paediatric patients to build relationships with other patients and give them greater access to information about death – Bluebond-Langner, 1978 • Ward and clinic friendships may develop between families and children – Skeen & Webster, 2004 Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. www. connectedkansaskids. com
One Maori view of death • “‘The kids would come in when no-one else was there. They’d pull back the cover and look at his fingers, and touch his hands or face. . . There was no fear –it was a natural part of the way we live and are” (Schwass, 2005). – Sharon Clair of the New Zealand Nurses Organisation (when sitting with the body of her uncle) Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
PPC patients’ views of death • “‘I know I’m going to die very soon and just have to talk to somebody about it’” – Kübler-Ross, 1983, p. 21 Many people avoid raising the topic of death with children in order to protect them or because they believe children will not understand death —Bertoia, 1993, p. 1 Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Kreicbergs, 2004 • Parents were asked “whether or not they had talked about death with their child” and whether or not they regretted having that conversation. – 0/147 parents who talked about death with their child regretted it. – 69/258 parents (27 percent) who did not talk with their children about death regretted not having that conversation. Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Research Scope Paediatric Palliative Care . 1: Compare young children’s perceptions of death to the understanding their caregivers believe the children hold 2: Explore themes arising from family/ whanau interviews. 3: Give patients and siblings a voice. 4: Analyse the views which siblings of paediatric palliative care patients hold. Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Involved Organisations http: //www. starship. org. nz http: //www. heartchildren. org. nz/ http: //www. childcancer. org. nz/ Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
1: Death Understanding Comparison • • • 2009 – 2010: 10 primary schools Upper / middle-class areas in Auckland, NZ 141 children (77 boys, 66 girls) with caregivers 5, 6 or 7 years old (M = 6. 08, SD = 0. 76 years) Ethnicities: 54. 6% European, 9. 2% Māori, 5. 7% Pacific Islander, and 30. 5% other. – European category: NZ European, Pakeha, White, British, Caucasian, Dutch, Other European, South African European Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
1: Death Understanding Comparison 0. 5 Average Differences (Child - Caregiver Score): 0. 45 0. 4 0. 35 0. 3 0. 25 0. 2 0. 15 0. 1 0. 05 0 Inevitability Applicability Irreversibility Cessation Causation Personal Mortality Gaab, E. M. , Mac. Leod, R. and Owens, R. G. (2012) Caregivers’ Estimations of Their Children’s Perceptions of Death as a Biological Concept. Manuscript submitted for publication. Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
1: Death Understanding Comparison Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
2: Primary Caregiver Interviews Demographics Cancer Heart Condition Dystrophy Other Mothers Fathers Other Caregivers Living child Bereaved 3 3 1 2 1 3 1 1 1 1 http: //upload. wikimedia. org/wikipedia/commons/9 /97/Starship_Hospital_Bottom. jpg Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
2: Primary Caregiver Interviews Acknowledge Caregivers talked with young people about death to. . . Enable Relationships Teach Caregivers avoided talking about death to avoid negative changes in… Perceptions Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. Emotions
2: Primary Caregiver Interviews Not telling: Parents did not tell their children to avoid negative changes. being the bearer of bad new or telling children in the wrong way (n=7) negative emotional reactions (n=13) They wanted to protect them from. . . Avoiding negative changes in emotions blame/ regret (n=2) the unknown (to parent) (n=6) losing hope (n=7) Avoiding negative changes in perceptions Avoiding negative changes in relationships as per others' recommendatio ns (n=6) the child did not want to discuss (n=11) / an unnecessary conversation (n=9) Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. stigma about death from others / changing lifestyle (n=11) losing innocence (n=9)
2: Primary Caregiver Interviews Telling the children: Parents talked about death Unavoidable; patient already knew; elephant in the room (n=8) Family is always open and honest with children (n=14) Acknowledgem ent They wanted to prepare them by providing them with. . . to reassure children (decrease fear) (n=12) for children and their friends' questions (n=5) to break the news gradually (n=9) Teaching Guilt: do not lie or trick the child (n=4) to help understand why (n=9) In response to the children (not denied or forced) (n=13) to appreciate the less fortunate and help the family (n=8) to allow children to express their emotions (n=9) to grant pre- and postdeath wishes (n=14) hope, willpower, strength and peace of mind (n=8) Enablement the patient can handle the situation maturely (n=8) Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. the advice and support of others (n=14) to grant permission to die (n=2) to let children work through their issues themselves (n=4)
3: Patient & Sibling Ethnographies Demographics Cancer Heart Condition Dystrophy Sisters Brothers Female Patients Male Patients 3 1 1 1 2 Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. http: //www. skylight. org. nz/skylight-shop/resources-for -sale/emotional-wellbeing. aspx 2
3: Patient & Sibling Ethnographies Special treatment of patients Time with family Mortality Concerns of PPC Patients and Siblings Being understood / Understanding Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. Judgement / Discrimination
4: Sibling Interviews Demographics Cancer Heart Condition Dystrophy Other Sisters Brothers Living Sibling Bereaved 3 3 1 2 2 1 1 2 3 William-Adolphe Bouguereau - Two Sisters (1901). jpg from commons. wikim edia. org Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
4: Sibling Interviews Mortality Siblings’ Perspectives Helping Patients • “It’s better to know than being left in the dark… Say you walk up and say something wrong, … then you don’t know why everyone’s upset with you… Even young kids should be told. It affects them. ”— Bereaved Sister • “[Patient] got a lot more attention. . . she’s the one that’s sick. . . they need attention and that to get better. I didn’t mind it, actually!”— Bereaved Sister • “[It is helpful] that we can do jobs for people when they are sick and. . . Get them what they want and get them what they need. ”—Bereaved Brother Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum.
Some References • • • • • • • • • Adelman, C. (1993). Kurt Lewin and the Origins of Action Research. Educational Action Research, 1(1), 7 -24. Armstrong-Dailey, A. Z. , Sarah. (1993). Hospice care for children (3 rd ed. ). New York: Oxford University Press. Bertoia, J. (1993). Drawings from a dying child : insights into death from a Jungian perspective New York: Routledge. Bird, J. E. , & Podmore, V. N. (1990). Children’s understanding of health and illness. Psychology & Health, 4(2), 175 -185. Bluebond-Langner, M. (1978). The private worlds of dying children. Princeton, N. J. : Princeton University Press. Bluebond-Langner, M. (2000). In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child : Princeton University Press. Chen, P. W. (2007). Final Exam: A Surgeon’s reflections on mortality. New York: Random House, Inc. Child and Youth Mortality Review Committee. (2006). Third Report to the Minister of Health: Reporting mortality 2002– 2004. Wellington: Child and Youth Mortality Review Committee. Dickenson, A. R. S. , E. ; Spence, D. (2006). Within the web: the family–practitioner relationship in the context of chronic childhood illness. Journal of Child Health Care, 10(4), 309 -325. Eiser, C. , Mohay, H. , Morse, R. . (2000). The measurement of quality of life in young children. Child: Care, Health and Development, 26(5), 401 -414. Faulkner, K. W. (1997). Dealing with Death: Talking about Death with a Dying Child. The American Journal of Nursing, 97(6), 64 -69. Finlay, F. L. , M. ; Lenton, S. ; Poon, M. . (2008). Planning for the end of children's lives - the lifetime framework. Child: care, health and development, 34(4), 542– 544. Hilden, J. M. , Watterson, J. , & Chrastek, J. (2000). Tell the Children. J Clin Oncol, 18(17), 3193 -3195. Himelstein, B. P. , Hilden, J. M. , Boldt, A. M. , & Weissman, D. (2004). Pediatric Palliative Care. N Engl J Med, 350(17), 1752 -1762. Hinds, P. S. , Drew, D. , Oakes, L. 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Ethical guidelines for research with children : a review of current research ethics documentation in New Zealand Kōtuitui: New Zealand Journal of Social Sciences, 1 (2), 125 -138 PPCT, S. (2009). Child and Adolescent Palliative Care Seminar. Tamaki Campus, University of Auckland. Reilly, T. P. , Hasazi, J. E. , & Bond, L. A. (1983). Children's Conceptions of Death and Personal Mortality. J. Pediatr. Psychol. , 8(1), 21 -31. Reynolds, L. S. (2006). Family Resilience when Coping with Death: Parent and Child Perspectives. Victoria University of Wellington, Wellington. Sheetz, M. J. , & Bowman, M. -A. S. (2008). Pediatric Palliative Care: An Assessment of Physicians' Confidence in Skills, Desire for Training, and Willingness to Refer for End-of-Life Care. American Journal of Hospice and Palliative Medicine, 25(2), 100 -105. Slaughter, V. , & Griffiths, M. (2007). Death Understanding and Fear of Death in Young Children. Clinical Child Psychology and Psychiatry, 12(4), 525 -535. Spinetta, J. J. , Jankovic, M. , Eden, T. , Green, D. , Martins, G. A. , Wandzura, C. , Wilbur, J. , Masera, G. (1999). Guidelines for assistance to siblings of children with cancer: Report of the SIOP working committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology, 33(4), 395 -398. Starship Children's Health, & Starship Foundation. (2009). Starship Children's Health: Palliative Care Team. Retrieved 20 May, 2009, Steele, R. , Davies, B. , Collins, J. B. , & Cook, K. (2005). End-of-Life Care in a Children’s Hospice Program. Journal of Palliative Care, 21(1), 5 -11. Thompson, F. , Payne, S. (2000). Bereaved children’s questions to a doctor. Mortality, 5(1), 74 -96. Worswick, J. (1993). A House Called Helen: The Development of Hospice Care for Children (1 st ed. ). USA: Oxford University Press. Wollington, T. (1988). I'm still running. Winsford, Totnes Road, South Devon: J. J. Halliday. 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Some Acknowledgements • Glynn Owens • Cynthia Ward • Judy Mc. Fall • Rod Mac. Leod • Wayne Ferguson • Liz Hardley • Participating Families • Shona Harvey • Robin Dixon • Auckland School Teachers • Family Support at Heart • Linda Cameron • Andrew Thompson Children • Myra Bluebond-Langner • Joanna Stewart • George Mark Children’s House • Fiona Pienaar • Eva Moranga …And so many others • Starship Paediatric Palliative • Lorna Dyall Care Team • Jane Skeen • Gail Gillies • Mata Forbes • Claire Cartwriight • Mary Ann Powell • Heather Mc. Dowell Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. http: //blog. tmcnet. com/blog/rich-tehrani/uploads/thanks. jpg
Thank you for listening! Erin Gaab, Ph. D Student e. gaab@auckland. ac. nz Department of Psychology Tamaki Campus, University of Auckland Private Bag 92019, Auckland, New Zealand +64 9 373 7599 ext. 87818 Nam dapibus, nisi sit amet pharetra consequat, enim leo tincidunt nisi, eget sagittis mi tortor quis ipsum. Paediatric Palliative Care
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