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Pediatric Supportive Care (PDQ®)

Health Professional Version
Last Modified: 02/21/2014

End of Life

Considering End-of-Life Issues
Support for End-of-Life Care
        Hospice care
        Complementary and alternative therapies
        Personal discussions
Strategies for Improving End-of-Life Care
Other Issues

Despite significant improvements in long-term, disease-free survival in children treated for cancer,[1] cancer is the leading disease-related cause of death for children in the United States.[2] For more than half of children for whom frontline treatment fails, treatment using relapse and disease recurrence clinical trials (phase I and phase II) and unrelated hematopoietic stem cell transplantation is common.[3] For children, this strategy is sometimes effective in providing prolonged remissions with patient-valued quality of life.[4] For these reasons, many children treated for cancer in the United States and around the world die in inpatient settings while receiving active cancer treatment.[5] Clinical practice and experience is the driving force in this field; unfortunately, very few empirical studies have been published to guide practice.

Considering End-of-Life Issues

Planning for a child’s death is often a very uncomfortable topic for parents, other family members, and members of the health care team. Children are not supposed to die. Although there has been a significant emphasis on better understanding the decision-making process and the care provided for children at the end of life,[6] many parents choose to continue active cancer treatment until death.

One hundred forty-one parents who had lost a child to cancer were asked whether their children benefited or suffered from treatment with no realistic expectation of success. Thirty-eight percent of the parents indicated that their children continued to receive cancer-directed therapy, even after the parents recognized that there was no realistic chance of success. Sixty-one percent of these reported that their child experienced some suffering, and 57% reported little or no benefit from the continued treatment. Despite these experiences, 57% reported that they would recommend standard chemotherapy during the end-of-life phase, and 33% would recommend experimental (phase I and phase II) treatment. Parents who felt that their child suffered at the end of life were less likely to recommend additional chemotherapy. However, even those who did not personally support using standard chemotherapy at the end of life (91%) felt that physicians should offer this as an option.[7]

Parent and physician perspectives on quality of care at the end of life do not always match. Parents of children who died from cancer reported focusing primarily on relationship issues, with higher ratings for physician care when oncologists:[8]

  • Provided clear information.
  • Communicated with care and sensitivity.
  • Communicated directly with the child when appropriate.
  • Prepared parents for the circumstances around the child’s impending death.

Oncologists based care ratings on biomedical measures such as lower ratings of pain by parents and fewer days of hospitalization.

Support for End-of-Life Care

Resources to support palliative care and end-of-life care for children treated for cancer are often quite limited. A survey of member institutions of the Children’s Oncology Group (81% response rate) found that only 58% had a pediatric palliative care team available to families,[9] although the following related services were available:

  • Pain service, 90%.
  • Hospice, 60%.
  • Psychosocial support team, 80%.
  • Bereavement program, 59%.

Complementary and alternative medicine services were available in 39% of institutions and in 95% of communities served by the institutions. Support for other family members, particularly siblings, is often missing from these programs.[5]

Hospice care

Referrals to hospice care are often limited by hospice policies that do not accept patients still receiving active chemotherapy. Twelve hundred pediatric oncologists in the Children’s Oncology Group were surveyed about hospice referral practices (67% response rate). Hospice referrals were limited by lack of access to inpatient hospice programs. However, pediatric oncologists indicated that if the hospice program accepted children still receiving chemotherapy, referrals were more likely and the children were also more likely to die at home than in hospitals.[10]

Complementary and alternative therapies

Despite broad popular interest in complementary and alternative therapies, few children are offered access to this treatment. A study of Children’s Oncology Group institutions in Canada found that complementary and alternative therapies were offered at only 18% of treating institutions, although these were available in 94% of communities. Direct referrals were only provided to 6% of families, and only 20% of institutions had developed any guidelines for the use of complementary and alternative therapies.[11] To address this issue, studies are in progress to examine the integration of complementary and alternative therapies with conventional treatment in the Children’s Oncology Group.[12]

Personal discussions

Despite the relative absence of structured palliative care and end-of-life care for children treated for cancer, personal discussions about palliation and end-of-life care between oncologists and parents nevertheless take place. A study of 140 parents whose children died of cancer found that if the primary oncologist discussed options and if home health support were available, 88% of parents planned how they wanted their child’s end-of-life care to be provided, and 97% accomplished their plan. This was associated with more home deaths (72% vs. 8% who did not plan); fewer hospital admissions (54% vs. 98%); parents feeling more prepared (37% vs. 12%) and comfortable with the process (84% vs. 40%); and, for those who died in the hospital, fewer deaths in the intensive care unit (92% vs. 33%) and with intubation (21% vs. 48%).[13]

Strategies for Improving End-of-Life Care

Care of children at the end of their lives is complex. A comprehensive summary of pediatric palliative care has highlighted the following general issues that need to be considered:[14]

  • Communication (verbal and nonverbal) with children and families should be caring, sensitive to individual and family concerns, and provided within the context of a child’s age and developmental level.

  • Palliative care should specifically include strategies for assessing and managing pain and other symptoms associated with the end of life. Medications and other supportive care interventions should be provided for pain, agitation, pruritus, nausea and vomiting, seizures, and secretions. For children for whom bleeding is a disturbing end-of-life consequence, platelet transfusions may also be appropriate.

  • The emotional and spiritual needs of families and children should be identified and addressed. Families are composed of individuals, and there are usually variations in how individual family members cope with impending death; cultural beliefs and practices may also influence this process. Being aware of factors that contribute to this variation and tailoring interventions to individual families are important aspects of end-of-life care.

  • Structured support for bereavement care should be provided. Some institutions support bereavement teams who provide families with items such as handprints of the child, photo albums, and quilts to facilitate transition at the time of the child’s death. Other institutions provide parents with information about what may occur at the time of death and common experiences of family members in the hours, days, weeks, and months following the death. Some also provide one to three sessions of bereavement support for family members after the child’s death. (Refer to the PDQ summary on Grief, Bereavement, and Coping With Loss for more information.)

  • Parents should be engaged in early discussion about advance care planning. It has been suggested that this discussion begin at the time of diagnosis for all children who have a survival prognosis lower than 50%, although others prefer to delay this discussion until the time of relapse or disease progression. Advanced care planning includes discussion about the use of standard or experimental treatments, preferred location for the child’s death, whether to involve hospice, funeral arrangements, and whether a Do Not Resuscitate (DNR) order is to be implemented in inpatient and outpatient settings. Depending on their developmental and cognitive capacities, some children who are dying benefit from being included in these advance care decisions.

Other Issues

Many aspects of end-of-life care for adults and children with cancer overlap. At the same time, specific developmental, family, and even legal issues are unique to children and require careful consideration. State laws related to withdrawal or withholding of care vary, and end-of-life care may be affected by whether a child is in the custody of biologic parents or legal guardians or is a ward of the state. Some states do not permit DNR decisions to be made for children in their care. Health care teams have a responsibility to be aware of state laws, hospital policies, and ethical standards in their community and integrate this information into end-of-life care. Ultimately, the challenge is to balance available intervention and support with unique family, child, and physician concerns in a way that optimizes quality of life for the child and family.[15] (Refer to the PDQ summary on Last Days of Life for more information.)

References
  1. Linabery AM, Ross JA: Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975-1999. Cancer 113 (9): 2575-96, 2008.  [PUBMED Abstract]

  2. Kochanek KD, Kirmeyer SE, Martin JA, et al.: Annual summary of vital statistics: 2009. Pediatrics 129 (2): 338-48, 2012.  [PUBMED Abstract]

  3. Hechler T, Blankenburg M, Friedrichsdorf SJ, et al.: Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220 (3): 166-74, 2008 May-Jun.  [PUBMED Abstract]

  4. Berg SL, Chamberlain MC: Systemic chemotherapy, intrathecal chemotherapy, and symptom management in the treatment of leptomeningeal metastasis. Curr Oncol Rep 5 (1): 29-40, 2003.  [PUBMED Abstract]

  5. Friedrichsdorf SJ, Menke A, Brun S, et al.: Status quo of palliative care in pediatric oncology-a nationwide survey in Germany. J Pain Symptom Manage 29 (2): 156-64, 2005.  [PUBMED Abstract]

  6. Field MJ, Behrman RE, eds.: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: Institute of Medicine, National Academies Press, 2003. Also available online. Last accessed October 16, 2013. 

  7. Mack JW, Joffe S, Hilden JM, et al.: Parents' views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol 26 (29): 4759-64, 2008.  [PUBMED Abstract]

  8. Mack JW, Hilden JM, Watterson J, et al.: Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23 (36): 9155-61, 2005.  [PUBMED Abstract]

  9. Johnston DL, Nagel K, Friedman DL, et al.: Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol 26 (28): 4646-50, 2008.  [PUBMED Abstract]

  10. Fowler K, Poehling K, Billheimer D, et al.: Hospice referral practices for children with cancer: a survey of pediatric oncologists. J Clin Oncol 24 (7): 1099-104, 2006.  [PUBMED Abstract]

  11. Johnston DL, Nagel K, O'Halloran C, et al.: Complementary and alternative medicine in pediatric oncology: availability and institutional policies in Canada--a report from the Children's Oncology Group. Pediatr Blood Cancer 47 (7): 955-8, 2006.  [PUBMED Abstract]

  12. O'Mara A: Complementary and alternative medicine research and cooperative groups: can it happen? J Pediatr Oncol Nurs 23 (5): 258-60, 2006 Sep-Oct.  [PUBMED Abstract]

  13. Dussel V, Kreicbergs U, Hilden JM, et al.: Looking beyond where children die: determinants and effects of planning a child's location of death. J Pain Symptom Manage 37 (1): 33-43, 2009.  [PUBMED Abstract]

  14. Himelstein BP, Hilden JM, Boldt AM, et al.: Pediatric palliative care. N Engl J Med 350 (17): 1752-62, 2004.  [PUBMED Abstract]

  15. Friedman DL, Hilden JM, Powaski K: Issues and challenges in palliative care for children with cancer. Curr Pain Headache Rep 9 (4): 249-55, 2005.  [PUBMED Abstract]