March 10, 2010 — A survey of parents who had a child die from cancer found that more than 1 of every 8 parents had considered asking about "hastening death" for their child, most commonly if the child had been in uncontrollable pain. The study also found that 1 in 10 parents reported having discussed intentionally ending their child's life.
These findings, from the first study on this topic in children, are reported in the March issue of Archives of Pediatric & Adolescent Medicine. The numbers are similar to those reported for adults with terminal cancer, the authors note, but family perspectives about hastening death in children have not been previously described.
"Our study reveals that consideration of and discussions about hastening death in children do, in fact, occur," they explain.
"Clinicians caring for a child with advanced cancer should thus be prepared to hold discussions related to hastening death considerations," they add.
The numbers might be on the low side; there is probably a bias toward underreporting, given the "taboo nature of this topic," said senior author Joanne Wolfe, MD, MPH, from the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute in Boston, Massachusetts. "We weren't surprised by these findings; they fit in with my own clinical experience," she said in an interview with Medscape Oncology.
"You can't even imagine the scenario, but these parents have gone beyond searching for a cure, leaving no stone unturned, fighting for anything that will extend life," she explained. "At the stage when they realize that there is no realistic chance for any improvement, the instinct that takes over is to protect their child and for the child not to suffer anymore."
"This came out in our results — pain and suffering were the main drivers," she added, especially when a child is in unbearable pain.
For the study, the researchers interviewed physicians and parents of children who had died from cancer between 1990 and 1999 at the Dana-Farber Cancer Institute/Children's Hospital, and at the Children's Hospitals and Clinics in Minneapolis and St. Paul, Minnesota. One parent per family was interviewed, primarily over the telephone, and 141 parents completed the survey.
The survey was a semi-structured questionnaire of 390 items, most of which were developed by the researchers specifically for this study. Parents were eligible if their child had died from cancer at least a year earlier. They were asked if they had ever considered, discussed, or actively sought hastening death for their terminally ill child.
Parents were also given 2 clinical vignettes and asked about their views on hastening death in these scenarios. Both involved a 9-year-old child with widely metastatic cancer and no realistic chance of cure, but in one the child was in uncomfortable pain and in the other the child was in an irreversible coma.
The results showed that 19 of 141 parents (13%) had considered asking about hastening dearth for their child, and 13 parents (9%) reported discussions about intentionally ending their child's life. Five parents (4%) reported having explicitly asked a clinician for medications to end a child's life, and 3 parents (2%) reported that their child's life was intentionally ended with medication (morphine in all 3 cases).
When asked for the views in retrospect, 36% of parents (1 in 3) said they would have considered hastening death for their child under certain circumstances, most commonly if the child had been in uncontrollable pain.
When responding to the clinical vignettes, 94% of parents endorsed proportionately intensive symptom management for a terminally ill child with uncontrolled excruciating pain, whereas only 54% did so for a child in an irreversible coma.
Of the 141 parents, 70 (50%) endorsed hastening death in at least 1 of the clinical vignettes. This figure (1 in 2) is similar to that found among the general public in the United States for endorsement of hastening death in adults, the authors note.
"These findings suggest that the proportion of parents who would consider hastening death may fluctuate, depending on the child's clinical condition," the authors note. They offer several hypotheses explaining the underlying factors leading to requests to hasten death.
The most important factor appears to be the role of suffering, they report, with parents considering the hastening of death as representing "an exit plan to be used when no other alternatives are recognized" and "a means to end intolerable pain."
Dr. Wolfe told Medscape Oncology that the main message from this study to clinicians who are caring for children who are dying from cancer is to be aware that these considerations do occur to parents, and that they "need to be aired and discussed."
She suggested that misunderstanding can occur, with parents thinking one thing and physicians thinking another. As a case in point, she noted the 3 cases in the study where morphine had been used — according to the parents — to hasten death. It is more likely, she believes, that physicians used morphine to alleviate pain, and she pointed out that opiates, when used appropriately, do no hasten death. "This is a popular misconception," she added, and the misconception is also found among clinicians.
In cases where parents are thinking about hastening death as a means to end intolerable pain, discussion about alternative plans could help to ease the parents' views, the authors suggest. Clinicians should discuss proportionately intensive symptom management and palliative sedation, and point out the differences between these 2 approaches, Dr. Wolfe explained.
Approached for independent comment, Nancy Keating, MD, MPH, from the Department of Health Policy at Harvard Medical School in Boston, who recently published a paper on "end-of-life discussions," said: "I think this paper underscores that there is still a lot of room for improvement in the death experience for cancer patients and their families. Parents were more likely to report considering hastening death for children who were suffering from pain, and other data suggest that pain and suffering remain far too common. Working to improve symptoms management would likely go a long way toward improving the death experience and decreasing parents' desire to hasten death."
The researchers have disclosed no relevant financial relationships.
Arch Pediatr Adolesc Med. 2010:164:231-237. Abstract
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Cite this: Parents Consider "Hastening Death" in Children With Terminal Cancer - Medscape - Mar 10, 2010.