End of Life
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:
- 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, 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.
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.