Watching a child suffer from a fatal illness is undoubtedly one of the greatest agonies a parent can face. Less discussed, however, are the lengths to which a parent may be willing to go to end such pain.
An intriguing new study led by doctors at the Dana-Farber Cancer Institute in Boston aimed to explore that question through a series of interviews conducted with 141 parents whose children had died of cancer. The study reports that 19 parents said they had thought about asking a doctor to hasten their child's death and that 13 parents actually discussed it with caregivers. When asked by the study authors, an additional 34% of the parents said that in retrospect, they would have considered intentionally ending their child's life if the child had been in uncontrollable pain. "The fear of pain is the critical factor for parents with regard to hastening death," says Dr. Joanna Wolfe, one of the study's authors and the director of pediatric palliative care at Dana-Farber and Children's Hospital Boston.
The study highlights the difficulty in treating dying children. Parents find it intolerable to witness their child in pain. Yet few parents, understandably, wish to concede that their child's illness is incurable. And that reluctance, combined with an uncertain outlook for many pediatric cancers, makes it much more difficult for caregivers to map out end-of-life treatment plans for seriously ill children. "An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care," wrote the authors of a 2008 study conducted at the University of California, San Francisco, Children's Hospital, on pediatric palliative practices, but because of parents' and caregivers' hesitation to talk about such difficult questions, the authors added, "many dying children still do not receive palliative care and may suffer needlessly."
The Dana-Farber research is the first of its kind. Part of an ongoing, larger examination of pediatric palliative care, the survey asked the parents about their attitudes toward hastening the death of their children (by the time of the study, the children's deaths had occurred between one and 10 years earlier) as well as their more current reactions to two hypothetical vignettes about children with fatal cancers. One vignette involved uncontrollable pain at the end of life, while the other involved irreversible coma. In both situations, the parents became more likely to endorse hastening death as the level of the children's pain increased. The likelihood of endorsement was also affected by race, religion and socioeconomics, with white or non-religious parents being more likely to say they would consider hastening death. "Parents who identified as more religious were less likely to admit they had such thoughts [of hastening death]," says Veronica Dussel, a Dana-Farber research fellow and lead author of the study, which was published on Monday in the Archives of Pediatrics & Adolescent Medicine. "Parents with higher incomes were more likely to say they had."
The study was small, and the children of the parents who participated were treated at three hospitals (two in Boston and one in MinneapolisSt. Paul), which does not lend much statistical power to its findings. But given the considerable social stigma about euthanasia in the U.S., where only two states, Oregon and Washington, have legalized physician-assisted suicide, researchers think that the percentage of parents admitting to having thoughts about hastening death is probably lower than reality.
The results suggest that discussions about hastening death in pediatric patients occur with about the same frequency and among the same demographic groups as euthanasia deliberations by family members of adult terminal patients. But in many cases, the family may choose different approaches depending on the age of the patient. Terminally ill adults' pain, for instance, is often alleviated through morphine-induced sedation what is known as palliative sedation. Often, palliative sedation results in unconsciousness, and may also be accompanied by withdrawal of life-sustaining treatments a legal option for end-of-life pain relief. But parents of young children are much more reluctant to consider this approach. "For parents, every minute that their dying child is alert and awake is precious," says Wolfe, who cautions that the study's results reflect instances in which there was 100% certainty a child would die soon. "So while we have legal options to control pain and make sure patients are pain-free, some are not viable for parents."
The study's authors note, however, that an overwhelming number of the parents said they would consider intensive symptom management to control their children's pain. This treatment involves increasing the dosage of medications to control pain, while accepting that it may increase the risk of sedation or breathing difficulties. The authors say such alternatives may be raised with parents who are trying to determine how to treat their dying child.
In all cases, talking early on about measures to treat pain can help ease a family through a child's death. Wolfe emphasizes that discussing end-of-life options should never be seen as giving up. "Caregivers must create opportunities for parents to discuss their hopes but also their worries and fears about losing a child," she says. "For all involved, the healthiest long-term path is, Let's hope for the best but plan for the worst."