Childhood cancer and pain: Answers to questions not asked

FEATURED SEARCH: pain end of life pediatric oncology

This search finds nothing new or definitive about end-stage pain relief in pediatric oncology, sad to say. There have been no new guidelines about pediatric cancer pain for the past five years. During that period the only research reports on the topic are case studies of using ketamine or fentanyl when opioids fail. But what of the other kinds of pediatric cancer pain: The deeper pain of a future that is death, and that of the professionals responsible for seeing it through?

An essay in AMA’s Virtual Mentor provides concrete guidance for these larger issues, in the story of a medical student caught between a rock (the parents who fear telling the truth to their teenage son) and a hard place (the son who wants no more treatment). The writer is pediatric palliative care specialist Sarah Fiebert, MD, coauthor of a study on palliative care in pediatric oncology published two years ago. It found that barely half of Children’s Oncology Group centers had palliative care facilities. Several studies since then have examined the barriers to and educational needs for pediatric palliative care (some of which appear in the special issue of Virtual Mentor that includes Fiebert’s essay.)

RESULT: Nondisclosure and Emerging Autonomy in a Terminally Ill Teenager
Virtual Mentor | Jul 11, 2010

RESULT: Availability and Use of Palliative Care and End-of-Life Services for Pediatric Oncology Patients
Journal of Clinical Oncology | Oct 1, 2008

This month, researchers in Ottawa report on their experience with a new program for children with terminal illness. One-fifth had cancer. Referrals have increased over time, and a substantial proportion of children left the program alive—to die at home or in a hospice.

RESULT: A paediatric palliative care program in development: trends in referral and location of death
Archives of Disease in Childhood | Jul 15, 2010

Perhaps the hardest part in pediatric brain cancer is not the pain, observe the unflinching authors of a survey that approached parents whose children had died of brain cancer and interviewed them in detail. It’s the gradual loss of capacities, which makes the child sad. Many parents wanted their child to die at home in a familiar room, but often the support network was not available. (Who should have the duty to provide that? Is it even feasible, in this environment?)

RESULT: Palliative care of children with brain tumors: A parental perspective
Archives of Pediatrics and Adolescent Medicine | Mar 1, 2010

Often the children themselves help parents and professionals with the psychic pain, says the report of their survey. But caregivers can also help each other. Full text of this study in Supportive Oncology is available, showing that a program of writing and sharing can help pediatric oncologists to endure that pain for which they have volunteered.

RESULT: Interprofessional Training to Promote Empathy, Build Teams, and Prevent Burnout
Supportive Oncology | Sep 10, 2008

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