The death of a child is painful to all witnesses, but the experience varies among individuals, and differing perspectives lead to a variety of definitions for a good death. This analysis is undertaken to clarify the dimensions involved in a good death of a child with cancer and to examine them from 3 perspectives: the dying child, the child's family, and the health care providers.
American Academy of Pediatrics. (2000). American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics , 106(2, Pt. 1), 351-357.
2.
Allen, D. (2004). The right to a "good death." Nursing Older People, 16(6), 6.
3.
Andershed, B., & Ternestedt, B. (2001). Development of a theoretical framework describing relatives' involvement in palliative care . . . based on four earlier studies. Journal of Advanced Nursing, 34, 554-562.
4.
Behrman, R. E., & Field, M. J. (Eds.). (2004). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC: Institute of Medicine of the National Academies.
5.
Brody, J. (2003, December 30). Facing up to the inevitable: In search of a good death. The New York Times, p. F5.
6.
Brown, M.L., Lipscomb, J., & Snyder, C. (2001). The burden of illness of cancer: Economic cost and quality of life. Annual Review of Public Health, 22, 91-113.
7.
Carter, B.S., Howenstein, M., Gilmer, M.J., Throop, P., France, D., & Whitlock, J.A. (2004). Circumstances surrounding the deaths of hospitalized children: Opportunities for pediatric palliative care. Pediatrics, 114(3), e361-e366.
8.
Children's International Project on Palliative/Hospice Services. (2001). A call for change: Recommendations to improve the care of children living with life-threatening conditions. Retrieved September 25, 2004, from http://www.nhpco.org/files/public/ChIPPSCallforChange.pdf
9.
Clark, B.A. (2003). In search of a good death: Spiritual care is important for a good death. British Medical Journal, 327(7408), 224.
10.
Cohen, L.M., Poppel, D.M., Cohn, G.M., & Reiter, G.S. (2001). A very good death: measuring quality of dying in end-stage renal disease [see comment]. Journal of Palliative Medicine, 4, 167-172.
11.
Docherty, S.L., Miles, M.S., & Brandon, D. (2007). Searching for "The Dying Point:" Providers' experiences with palliative care in pediatric acute care. Pediatric Nursing , 33, 335-341.
12.
Emanuel, E.J., & Emanuel, L.L. (1998). The promise of a good death. Lancet, 351(Suppl. 2), S1121-S1129.
13.
Evans-Murray, A. (2004). Meeting the needs of grieving relatives. Kai Tiaki: Nursing New Zealand, 10(9), 18-20.
14.
Freyer, D.R. (2004). Care of the dying adolescent: Special considerations . Pediatrics, 113(2), 381-388.
15.
Gazelle, G. (2001). A good death: Not just an abstract concept. Journal of Clinical Oncology, 19, 917-918.
16.
Goodenough, B., Drew, D., Higgins, S., & Trethewie, S. (2004). Bereavement outcomes for parents who lose a child to cancer: Are place of death and sex of parent associated with differences in psychological functioning? Psycho-Oncology, 13, 779-791.
17.
Hart, B., Sainsbury, P., & Short, S. (1998). Whose dying? A sociological critique of the "good death." Mortality, 3, 65-77.
18.
Hattori, K., McCubbin, M.A., & Ishida, D.N. (2006). Concept analysis of good death in the Japanese community. Journal of Nursing Scholarship, 38, 165-170.
19.
Hilden, J.M., Emanuel, E.J., Fairclough, D.L., Link, M.P., Foley, K.M., Clarridge, B.C., et al. (2001). Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. Journal of Clinical Oncology , 19, 205-212.
20.
Hilden, J.M., Watterson, J., & Chrastek, J. (2003). Tell the children . . . including commentary by Anderson PM. Journal of Clinical Oncology, 21(9 Suppl.), 37S-39S.
21.
Himelstein, B.P., Hilden, J.M., Boldt, A.M., & Weissman, D. (2004). Pediatric palliative care [see comment]. New England Journal of Medicine, 350, 1752-1762.
22.
Hinds, P.S., Schum, L., Baker, N.J., & Wolfe, J. (2005). Key factors affecting dying children and their families. The Journal of Palliative Medicine, 8(Suppl. 1), S70-S78.
23.
Hopkinson, J., & Hallett, C. (2002). Good death? An exploration of newly qualified nurses' understanding of good death. International Journal of Palliative Nursing, 8, 532-539.
24.
Hynson, J.L., Gillis, J., Collins, J.J., Irving, H., & Trethewie, S.J. (2003). The dying child: How is care different?Medical Journal of Australia, 179(6 Suppl.), S20-S22.
25.
Institute of Medicine. (2007). Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press .
26.
Kimberly, M.B., Forte, A.L., Carroll, J.M., & Feudtner, C. (2005). Pediatric do-not-attempt-resuscitation orders and public schools: A national assessment of policies and laws [see comment] . American Journal of Bioethics, 5, 59-65.
27.
Kolarik, R.C., Walker, G., & Arnold, R.M. (2006). Pediatric resident education in palliative care: a needs assessment. Pediatrics, 117(6), 1949-1954.
28.
Koocher, G.P. (1986). Coping with a death from cancer. Journal of Consulting and Clinical Psychology, 54(5), 623-631.
29.
Krant, M.J. (1976). Problems of the physician in presenting that patient with the diagnosis. In J. W. Cullen, B. H. Fox, & R. N. Isom (Eds.), Cancer: The behavioral dimensions (pp. 269-274). New York: Raven Press.
30.
Kurashima, A.Y., Do Rosario Dias Latorre, M., Aparecida De Paiva Teixeira, S. , & De Camargo , B. (2005). Factors associated with location of death of children with cancer in palliative care. Palliative and Supportive Care, 3, 115-119.
31.
Landro, L. (2004, April 8). Making life's end a "good death" The Wall Street Journal, p. D3.
32.
Leichtentritt, R.D., & Rettig, K.D. (2000). The good death: Reaching an inductive understanding . Omega-Journal of Death and Dying, 41, 221-248.
33.
Luo, W., Lane, R., Stobart, K., Morrison, H., Schanzer, D., Barr, R., et al. (2002). The medical care cost of childhood and adolescent cancer in Manitoba, 1990-1995. Chronic Diseases in Canada, 23(3), 83-90.
34.
Lynch, M., & Abrahm, J. (2002). Ensuring a good death. Cancer Practice, 10(Suppl. 1), S33-S38.
35.
Mak, J.M., & Clinton, M. (1999). Promoting a good death: An agenda for outcomes research-a review of the literature. Nursing Ethics: An International Journal for Health Care Professionals, 6(2), 97-106.
36.
Masera, G., Spinetta, J.J., Jankovic, M., Ablin, A.R., D'Angio, G.J., Van Dongen-Melman, J., et al. (1999). Guidelines for assistance to terminally ill children with cancer: A report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology , 32(1), 44-48.
37.
McAliley, L.G., Hudson-Barr, D.C., Gunning, R.S., & Rowbottom, L.A. (2000). The use of advance directives with adolescents. Pediatric Nursing, 26, 471-480.
38.
McCorkle, R. (1981). A good death. Cancer Nursing, 4, 267.
39.
National Cancer Institute. (2006, September). A snapshot of pediatric cancer. Retrieved January 28, 2007, from http://planning.cancer.gov/disease/Pediatric-Snapshot.pdf
40.
National Institutes of Health. (2004). Death: Leading Causes for 1999-2001. Retrieved September 29, 2004, from www.cdc.gov/nchs/data.nvsr4999/nvsr49_11.pdf
41.
Oleske, J.M., & Czarniecki, L. (1999). Continuum of palliative care: Lessons from caring for children infected with HIV-1. Lancet, 354(9186), 1287-1291.
42.
Pector, E.A. (2004). Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. Journal of Perinatology, 24, 4-10.
43.
The Pediatric Palliative Care Act of 2003, United States House of Representatives 108 Sess. (2003).
44.
Pierson, C.M., Curtis, J.R., & Patrick, D.L. (2002). A good death: A qualitative study of patients with advanced AIDS. AIDS Care, 14, 587-598.
45.
Plotnikoff, G.A. (2000). In search of a good death. The spiritual dimension . Minnesota Medicine, 83(5), 50-51.
46.
Rallison, L., & Moules, N.J. (2004). The unspeakable nature of pediatric palliative care: Unveiling many cloaks. The Journal of Family Nursing , 10(3), 287-301.
47.
Ries, L.A. (1999). Childhood cancer mortality. In L. A. Ries, M. A. Smith, J. G. Gurney, M. Linet, T. Tamra , J. L. Young, et al. (Eds.), Cancer incidence and survival among children and adolescents: United States SEER program 1975-1995 (Vol. NIH Pub. No. 99-4649, pp. 165-169). Bethesda, MD: National Cancer Institute, SEER Program .
48.
Schwartz, C.E., Mazor, K., Rogers, J., Ma, Y., & Reed, G. (2003). Validation of a new measure of concept of a good death. Journal of Palliative Medicine, 6, 575-584.
49.
Smith, D.C., & Maher, M.F. (1993). Achieving a healthy death: The dying person's attitudinal contributions. Hospice Journal, 9, 21-32.
50.
Smith, R. (2000). A good death. An important aim for health services and for us all [see comment]. British Medical Journal, 320, 129-130.
51.
Soto, R.G., & Rosen, G.P. (2003). Pediatric death: Guidelines for the grieving anesthesiologist . Journal of Clinical Anesthesia, 15, 275-277.
52.
Steinhauser, K.E., Clipp, E.C., McNeilly, M., Christakis, N.A., McIntyre, L.M., & Tulsky, J.A. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132, 825-832.
53.
Stephenson, J. (2000). Palliative and hospice care needed for children with life-threatening conditions. JAMA, 284, 2437-2438.
54.
Syed, A.A. (2003). What is a good death? A good death follows a good life. British Medical Journal, 327, 1047.
55.
Tang, S.T. (2003). When death is imminent: Where terminally ill patients with cancer prefer to die and why. Cancer Nursing, 26, 245-251.
56.
Ternestedt, B., Andershed, B., Eriksson, M., & Johansson, I. (2002). A good death: Development of a nursing model of care. Journal of Hospice and Palliative Nursing, 4, 153-160.
57.
Thobaben, M. (2000). Beyond physical care. Helping terminally ill clients experience a "good death." Home Care Provider, 5, 202-203.
58.
Thoresen, L. (2003). A reflection on Cicely Saunders' views on a good death through the philosophy of Charles Taylor. International Journal of Palliative Nursing, 9, 19-23.
59.
Tuch, H. (2001). Personal reflection. A "good death" nonetheless . Journal of Palliative Medicine, 4, 509-510.
60.
Walter, T. (2003). Historical and cultural variants on the good death . British Medical Journal, 327, 218-220.
61.
Walters, G. (2004). Is there such a thing as a good death? Palliative Medicine, 18, 404-408.
62.
Whittemore, R. (2004). Dimensional analysis. New Haven, CT: YSN.
63.
WHO. (2004). World Health Organization definition of palliative care. Retrieved November 17, 2004, from http://www.who.int/cancer/palliative/definition/en/print.html
64.
Wolfe, J., Grier, H.E., Klar, N., Levin, S.B., Ellenbogen, J.M., & Salem-Schatz, S. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342, 326-333.