NEWS

Incurable Childhood Cancers Pose Painful End-of-Life Issues

Mike Miller

When a cancer patient becomes terminal, end-of-life issues can be quite difficult, both for the patient and his or her family. But when that cancer patient is a child, these issues can be especially wrenching. Recent studies point to a lack of real understanding about how to treat children whose suffering may best be served by palliative care rather than aggressive curative approaches.

"While high-quality palliative care is now the expected standard of care for adult cancer patients," said Joanne Wolfe, M.D., Dana-Farber Cancer Institute, Boston, "with children, we often emphasize aggressive over palliative care."



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Dr. Joanne Wolfe

 
End-of-life issues such as a child's understanding of death, separation fears, and how a child's final days will be spent, become paramount when a terminal diagnosis is made. During these final months or days, palliative treatment of pain to prevent unnecessary suffering often involves not only pain control but control of psychological, social, and spiritual problems as well.

Quality of Life

The ultimate goal of palliative care is to achieve an acceptable quality of life for patients and their families. Palliative care for children can include touch therapy, imagery, and hypnosis, but more often includes a step regimen of analgesics that begin with non-opioid medications and other adjuvant therapies. As pain increases, these may be stepped up to include opioids and other adjuvant treatments.

To better assess the state of care for children at the end of life, Wolfe and her colleagues assembled a retrospective cohort of 103 patients who had died between 1990 and 1996 — many of them from leukemia and brain cancer. Nationwide, these two cancers account for nearly 50% of all deaths from childhood cancers. Wolfe then interviewed doctors and parents about their perspectives on the standard of care that children with cancer receive in their final months of life.

Wolfe found in her cohort that the average age at death from childhood cancers was 10.8 years and the average duration of disease was 2.7 years.

Lynn Ries, a statistician with the National Cancer Institute and the author of a recent article on childhood cancer in the NCI's SEER Pediatric Monograph, noted the difficulty in extrapolating Wolfe's study to a nationwide population. There were 2,275 cancer deaths among children in 1995, but over the past two decades childhood mortality in the United States declined dramatically, Ries said. "It is difficult to estimate the time to death in a nationwide sample because some children die very quickly, whereas other cancers may recur years later, and averaging the two estimates would be misleading," said Ries.

Wolfe interviewed the deceased children's parents whose average age was 43. She found that 75% of the children had been enrolled in clinical trials and that 36% of them had undergone bone marrow transplants for their cancers.

But her primary interest was in the type of care the children received in the last months of life. "We found that 24% used some type of complementary or alternative medicine but that, regardless of whether alternative or standard treatments were given, 95% of leukemia and lymphoma patients died of toxic complications."

Wide Gap

Most important for Wolfe were the differences between a physician's estimation of how long a child had to live, compared to that of their parents.

"Most parents lagged significantly behind the physicians in their perceptions of the duration of their [child's] final illness," Wolfe said. "Whereas physicians reported an average of close to 200 days to end of life, parents reported closer to 100 days." The timing for final illness or end-of-life was defined as the point at which there was no longer any hope of cure from the cancer.

A 1999 study by Pratap Sharan, M.D., Department of Psychiatry, Institute of Medical Education and Research, Chandigarh, India, looked at psychiatric disorders among parents of children with cancer. Sharan found that "50% of parents had psychiatric disorders, namely neurotic depression and depressed mood disorders." He noted, however, that these disorders were highly treatable.

Wolfe also found that parents had a difficult time after the death of a child, although their views changed after many months or even years had elapsed. Initially, she said, cure was most parents' major goal, but in retrospect, "they felt the lessening of suffering was more important."

In looking back, if their child had been in severe pain, 93% of parents said they would have asked for a higher dose of morphine, while only 49% of parents said they would have requested morphine for a child in a coma.

Denying Pain

According to a 1998 report on cancer pain, pain relief, and palliative care in children, older children may deny their pain for fear of more painful treatments, especially invasive procedures that appear painful to them.

The report, published by the World Health Organization in collaboration with the International Association for the Study of Pain, also notes that parents may not have asked aggressively for palliative care due to exaggerated fears of drug addiction, lack of knowledge about the way children perceive pain, and misunderstanding about how drugs work.

Additionally, a number of NCI-supported cancer pain studies show that at least a third of all cancer patients (both young and old) undergoing treatment, and fully two-thirds of people with advanced cancer, experience significant pain.

Compassionate Care

Besides her work at Harvard, Wolfe also has an appointment as a faculty scholar with the Project on Death in America, New York.

Kathleen Foley, M.D., the director of the project, said that the goal of the organization is for "education and clinical experience in providing competent, humane, and compassionate care of the dying."



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Dr. Kathleen Foley

 
Naturally assisted suicide and euthanasia are issues not unfamiliar to PIDA. So Wolfe asked, as part of her study, how many parents considered or discussed euthanasia when they were aware that death was imminent.

"Somewhat surprisingly, 16% considered the possibility and 11% actually got around to discussing the procedure," said Wolfe. "In reflecting on how their child died, 53% of parents would still choose the same rate, but 18% would have preferred a faster death."

At a recent conference sponsored by Last Acts, a national coalition to improve care and caring at the end of life, Jimmie Holland, M.D., Memorial Sloan-Kettering Cancer Center, N.Y., said that "grief is finite, and grief reaches resolution are two myths that aren't always true."

Holland urged parents to hold on to precious memories of their children and recall the big and small moments that made up their child's life.



             
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