Abstract
Paediatric palliative care seeks to optimize quality of life for children with life-limiting conditions, and their families. Ideally this philosophy should be integrated throughout the child’s disease trajectory, from diagnosis until death, and extending into bereavement. Since the concept of paediatric palliative care as a sub-specialty is relatively new, there is limited literature to guide the management of the care of dying children. Disagreements between healthcare providers and families as a child approaches end-of-life often result when a patient-centred approach and a family-centred approach lead to different conclusions about the best way to proceed. When attempting to resolve these conflicts, healthcare providers need to be mindful of the fact that the family will continue to live with the memory of this experience. Using cases created by merging actual clinical experiences, this chapter will explore the potential divergences created by a patient-centred and family-centred approach to the care of a dying child, while offering suggestions on how to resolve these conflicts.
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Notes
- 1.
Throughout this chapter, the term ‘child’ or ‘children’ will include children, infants and adolescents.
- 2.
Throughout this chapter, the term ‘parent’ will be used to denote any legal guardian of a child for the purpose of medical decision-making.
- 3.
This may not apply to all jurisdictions. In some jurisdictions the age of the patient is also taken into consideration when determining decision-making capacity.
References
American Academy of Pediatrics Committee on Bioethics. 1994. Guidelines on foregoing life-sustaining medical treatment. Pediatrics 93 (3): 532–536.
American Academy of Pediatrics Committee on Bioethics. 1996. Ethics and the care of critically ill infants and children. Pediatrics 98 (1): 149–152.
Bowman, K. W. 2000. Communication, negotiation, and mediation: Dealing with conflict in end-of-life decisions. Journal of Palliative Care 16 Suppl: S17–23.
Beale, E. A., W. F. Baile, and J. Aaron. 2005. Silence is not golden: Communicating with children dying from cancer. Journal of Clinical Oncology 23 (15): 3629–3631.
Breitbart, W. 2003. Reframing hope: Meaning-centered care for patients near the end of life. Interview by Karen S. Heller. Journal of Palliative Medicine 6 (6): 979–988.
Canadian Hospice Palliative Care Association. 2006. Pediatric hospice palliative care guiding principles and norms of practice. Ottawa.
Canadian Pediatric Society Bioethics Committee. 2004. Treatment decisions for infants, children and adolescents. Paediatrics & Child Health 9 (2): 99–103.
Cantor, N. L. 2005. The bane of surrogate decision-making: Defining the best interests of never competent persons. Journal of Legal Medicine 26 (2): 155–205.
Carnevale, F. A., E. Alexander, M. Davis, et al. 2006. Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics 117 (1): e48–60.
Carroll, K. W., C. J. Mollen, and S. Aldridge, et al. 2012. Influences on decision making identified by parents of children receiving pediatric palliative care. AJOB Primary Research 3 (1): 1–7.
Committee on Bioethics, American Academy of Pediatrics. 1995. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95 (2): 314–317.
Ditto, P. H., J. A. Druley, and K. A. Moore, et al. 1996. Fates worse than death: The role of valued life activities in health-state evaluations. Health Psychol 15 (5): 332–343.
Farsides, B., and R. J. Dunlop. 2001. Is there such a thing as a life not worth living? British Medical Journal 322 (7300): 1481–1483.
Kagawa-Singer, M., and L. J. Blackhall. 2001. Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. The Journal of the American Medical Association 286 (23): 2993–3001.
Kasman, D. L. 2004. When is medical treatment futile? A guide for students, residents, and physicians. Journal of General Internal Medicine 19 (10): 1053–1056.
Klein, D. A. 2011. Medical disparagement of the disability experience: Empirical evidence for the “Expressivist Objection”. AJOB Primary Research 2 (2): 8–20.
Kopelman, L. M. 1997.The best-interests standard as threshold, ideal, and standard of reasonableness. The Journal of Medicine And Philosophy 22 (3): 271–289.
Kreicbergs, U., U. Valdimarsdóttir, and E. Onelöv, et al. 2004. Talking about death with children who have severe malignant disease. New England Journal of Medicine 351:1175–1186.
Lyon, M. E., M. A. McCabe, and K. M. Patel, et al. 2004. What do adolescents want? An exploratory study regarding end-of-life decision-making. Journal of Adolescent Health 35:529.e1–529.e6.
Madrigal, V. N., K. W. Carroll, and K. R. Hexem, et al. 2012. Parental decision-making preferences in the pediatric intensive care unit. Critical Care Medicine 40 (10): 2876–2882.
McSherry, M., K. Kehoe, and J. M. Carroll, et al. 2007. Psychosocial and spiritual needs of children living with a life-limiting illness. Pediatric Clinics of North America 54 (5): 609–629, ix–x.
Meert, K. L., C. S. Thurston, and A. P. Sarnaik. 2000. End-of-life decision-making and satisfaction with care: Parental perspectives. Pediatric Critical Care Medicine 1 (2): 179–185.
Noyes J. 2006. Health and quality of life of ventilator-dependent children. Journal of Advanced Nursing 56 (4): 392–403.
Patrick, D. L., R. A. Pearlman, and H. E. Starks, et al. 1997. Validation of preferences for life-sustaining treatment: Implications for advance care planning. Annals of Internal Medicine 127 (7): 509–517.
Reder, E. A., and J. R. Serwint. 2009. Until the last breath: Exploring the concept of hope for parents and health care professionals during a child’s serious illness. Archives of Pediatrics & Adolescent Medicine 163 (7): 653–657.
Schattner, A., D. Rudin, and N. Jellin. 2004. Good physicians from the perspective of their patients. BMC Health Services Research 4 (1): 26.
Schnakers, C., and N. D. Zasler. 2007. Pain assessment and management in disorders of consciousness. Current opinion in neurology 20 (6): 620–626.
Schneiderman, L. J. 2011. Defining medical futility and improving medical care. Journal of Bioethical Inquiry 8 (2): 123–131.
Shields, L., J. Pratt, and J. Hunter. 2006. Family centred care: A review of qualitative studies. Journal of Clinical Nursing 15 (10): 1317–1323.
Steering Committee of the EPAC task force. 2007. IMPaCCT: Standards for paediatric palliative care in Europe. European Journal of Palliative Care 14 (3): 109–114.
The Multi-Society Task Force on PVS. 1994. Medical aspects of the persistent vegetative state (1). The New England Journal of Medicine 330 (21): 1499–1508.
UN Convention on the Rights of the Child.
Wilkinson, D. 2006. Is it in the best interests of an intellectually disabled infant to die? Journal of Medical Ethics 32 (8): 454–459.
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Newman, C., Rapoport, A., Sangha, G. (2014). Ethical Conflicts that may Arise When Caring for Dying Children. In: Zlotnik Shaul, R. (eds) Paediatric Patient and Family-Centred Care: Ethical and Legal Issues. International Library of Ethics, Law, and the New Medicine, vol 57. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0323-8_18
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