Feature

The untimely and unexpected nature of children's deaths makes them especially difficult for the dying person and their families. Yet, thousands of families must deal with such deaths every year: According to the Institute of Medicine at the National Academies--which has called for an increased effort to meet the needs of dying children--55,000 children died in 1999. But psychology's presence and support in such situations is limited for the most part, according to a task force created by APA's Ad Hoc Committee on End-of-Life issues in 2002 to examine the special contributions psychologists can make when a child dies.

The group's draft report, released and reviewed by boards and committees in March, notes a paucity of psychology training programs that--and caregivers who--address children's palliative care. And, although some psychologists have made significant contributions to the field, even most pediatric psychologists are not well educated or equipped in the specific ways psychologists can intervene in the end-of-life process, says task force member Elaine Meyer, PhD, of Harvard Medical School.

"There has been a national call for more and better integrated palliative care for children," Meyer says. "And there's a feeling that psychologists have been relative latecomers to the field of palliative care. The main reason we set out to do this report was to flesh out what the state of pediatric palliative care is and what psychologists can contribute."

At the end of life, critically ill children need special consideration when, for example, seeking a hospice or making difficult treatment decisions; they and their families can use psychologists' help in sorting out their emotions and motivations, Meyer says.

The report points to four child end-of-life complications in particular:

  • In most situations parents have legal authority to make decisions about medical treatments on behalf of their child.

  • Many children who die are born with rarely seen medical conditions that create substantial uncertainty in both prognosis and medical management.

  • Because of the rarity of some childhood medical conditions, seriously ill children and their families must often travel far from home for their treatment, removing them from their usual sources of support and placing great strain on family relationships and finances.

  • Parents and those delivering services to ill or injured children must consider developmental differences that affect diagnosis, prognosis, treatment demands, communication and how much a child should be involved in decisions such as whether to opt for continued chemotherapy.

"As kids get older, we want to make sure their voices are heard in decisions made about their lives," Meyer says. "A lot of people don't realize that kids can be very articulate and insightful about what matters to them."

Meyer, for example, provided therapy for a 15-year-old boy with cystic fibrosis who chose to have a lung transplant operation, even though it wasn't guaranteed to be successful and had potentially serious side effects. "He made it clear that he was at peace with his decisions, and that eased the stress on the family during his final days and following his death," she says.

But families are not always so in tune with their children. For example, parents may want to keep an impending death from a child and refuse to discuss it.

"So parents might benefit from psychologists' psychoeducation and intervention to better understand and appreciate how much the children are likely to already know," she notes. "There is a sense of peace that can be gained when you know you've made the right decisions on behalf of your child. You know they lived out their last days as they wished, you can take comfort knowing they were not in pain, and you know they knew you loved them."