Parents of dying children may ask doctors to hasten death
■ As physicians struggle with such appeals, a new study recommends a team approach to better manage pediatric cancer patients' pain and parents' distress.
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When the time came that his child no longer could enjoy life, the father of a terminal cancer patient asked Joanne Wolfe, MD, if she could help facilitate the child's death.
She declined, explaining that she and her team would do everything possible to manage the patient's pain. After the child died, the father told Dr. Wolfe that his request came from his own suffering and the anticipation of losing his child.
"That is one person's reflection, but it is so meaningful because of the recognition that it is an extraordinarily painful experience to lose a child in this way," said Dr. Wolfe, director of pediatric palliative care at Children's Hospital Boston. "It's heart wrenching."
Dr. Wolfe co-authored a study in the March Archives of Pediatrics & Adolescent Medicine that highlights the importance of controlling dying children's pain and providing parents with emotional support.
The study found that 19 of 141 parents surveyed after their children died of cancer -- average age, 10 -- considered asking physicians to use medication to intentionally end their children's lives. Five other parents said they had explicitly asked their doctors to hasten their children's deaths. Doctors supposedly complied with the requests of three other responding parents, though the study said it is unclear whether the parents misinterpreted intensive pain symptom management as intentional life-ending overdoses.
Physicians and the rest of the palliative care team must act before parents' anguish at seeing their children in pain reaches a level of such despair that hastened death is discussed, said Dr. Wolfe, also chief of the pediatric palliative care service at the Dana-Farber Cancer Institute in Massachusetts.
"It starts a lot earlier than at the very end of a child's life," she said. "In the whole field of palliative care, the earlier you can be involved and develop trusting relationships with families and help to facilitate discussions, the better. Once you establish that kind of open communication, you have a better opportunity to prepare them to express fears about the child's experience of suffering and in advance educate them about the pain management strategies that can be very effective."
Dr. Wolfe said studies show that pediatric palliative care services that integrate teams of doctors, nurses, psychosocial clinicians and chaplains do a better job of managing dying children's pain and parents' distress than those that do not.
Many pediatric palliative care programs employ full-time chaplains to help parents who need to talk about more than just the clinical facts, said George Fitchett, PhD, a chaplain at Rush University Medical Center in Chicago.
"It is helpful for parents to know that the intense pain of helplessness is something the [care] team members understand," said Fitchett, associate professor and director of research in the Dept. of Religion, Health and Human Values at Rush University. "It's an important part of what a chaplain or a social worker does, which is to say that these feelings are not abnormal or signs of failure on their part."
The extreme anguish parents feel with regard to their children's pain is probably unique, he said.
"As a parent, you feel such responsibility for the welfare of your child and such painful helplessness when the child is gravely ill," Fitchett said. "You want to protect the child at all costs, and if you can't protect or cure them, then you want to minimize the suffering."
Parents of dying children deserve candid talk from their physicians, said Anthony L. Back, MD, whose research has focused on how to remove barriers that prevent doctors and patients from communicating about end-of-life care decisions.
Doctors should be "responding to, and asking about, [parents'] concerns and inviting more discussion and inquiry," said Dr. Back, professor of oncology at the University of Washington School of Medicine and an oncologist at the Fred Hutchinson Cancer Center, part of the Seattle Cancer Care Alliance. "It's important not to stigmatize the topic of hastened death. This is a kind of unintended consequence of medical technology, that people talk about controlling death."
Parents and other surrogate decision-makers are "terrified about suffering," he said. "Getting all the issues out on the table and helping people think through it overall ends up with the best results."