End-of-life care makes inroads in adult patients, so why do children suffer?
Study reveals disparity in pediatric palliative care
Pediatric oncology teams should take a closer look at the long tradition of protocol-based management and put greater stake in improving childrens’ quality of life during end-of-life care.
That’s the recommendation from a two-year study of children who died of cancer between 1990 and 1997 and received care at Boston’s Children’s Hospital, Dana-Farber Cancer Institute, or both.1 Parents of 103 children who died were interviewed during 1997 and 1998, and additional data were obtained from medical records review.
"This is one of the first studies to highlight the fact that palliative care is less adequate than needed in children with cancer. Without asking, we may have assumed that care was as best as could be expected, given the circumstances and given that we made such great strides in curing pediatric cancers," says Joanne Wolfe, MD, lead author of the study. Wolfe is an instructor in pediatric oncology at Harvard University, the Dana-Farber Cancer Institute, and Children’s Hospital.
Researchers found that children who die of cancer receive aggressive treatment at the end of life, but many experience pain in the last month of life because many caregivers focus on treating the disease rather than the pain. Cancer is the leading cause of non-accidental death in childhood,2 but little research has been conducted into the overall experience of children in end-of-life care or into their symptoms, the authors point out.
Parents surveyed reported that 89% of the children had suffered "a great deal" or "a lot" at the end of life from at least one symptom. More than half (57%) reported suffering significantly from at least three symptoms. The most common complaints parents reported were fatigue, pain, dyspnea, and poor appetite. Of those treated for pain, only 27% reported feeling better following treatment.
The preliminary results prompted Wolfe and colleagues at both Children’s Hospital and Dana-Farber to develop a multidisciplinary palliative care program, which she recommends for ethics committees looking to revise existing pediatric programs. (For more on the multidisciplinary palliative care program, see story, p. 27.)
The results weren’t surprising for palliative care advocates. Suzanne Mintz, co-founder and president of the National Family Caregivers Associa tion in Kensington, MD, says other studies point to the conclusion that many people die in pain.
Caring for children is a different matter
Caring for children with cancer at the end of life poses different problems than caring for adults, Wolfe and her team of researchers point out in the article. First, the provid ers’ goal of treatment is to achieve a cure. That often leads to the physicians’ inability to change their focus, even when there is little hope of a cure, they write. In fact, considerations such as toxicity of therapy, the quality of life, and growth and development usually are secondary to that goal.
A second problem is that parents and patients usually have little or no time to participate in decisions about end-of-life care or address emotions, such as anticipatory grieving, because they are reluctant to abandon treatment.
Additionally, more training and education on the part of caregivers is needed in pain management and spiritual care to improve palliative care among children. Physicians should take an active role in the child’s care, even if that involves frank discussions of death with family members.
"We did find that when the parent reported that the primary oncologist remained actively involved in the child’s end-of-life care, the child experienced less suffering from pain. This suggests that one can effectively manage symptoms when we pay close attention to them and integrate palliative care more comprehensively into the treatment plan," explains Wolfe.
The ethics committee can play an integral role in educating not only caregivers and parents on palliative care with children. Wolfe suggests ethics committees help in communicating with parents about decision making for end-of-life care issues. "Ethics committee members are trained to elicit and respect the values of patients, families, and parents. This is critical to developing an appropriate personalized, palliative care plan," says Wolfe.
References
1. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342:326-333.
2. Landis SH, Murray T, Bolden S, Wingo PA. Cancer statistics 1999. CA Cancer J Clin 1999; 49:8-31.
• Dana-Farber Cancer Institute, 44 Binney St., Boston, MA 02115. Telephone: (617) 632-3000. World Wide Web: http://www.dfci.harvard.edu.
• National Family Caregivers Association, 10400 Connecticut Ave., # 500, Kensington, MD 20895-3944. Telephone toll-free: (800) 896 3650. Fax: (301) 942 2302. E-mail: [email protected]. World Wide Web: http://www.nfcacares.org.
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