End of Life
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.
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.
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. 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.
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%).
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:
- 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.