Many Dutch Doctors Support Euthanasia for Terminally Ill Kids

The controversial study has its detractors, however

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HealthDay Reporter

WEDNESDAY, May 11, 2005 (HealthDay News) -- A child is suffering terribly from incurable cancer, and both he and his parents request a lethal injection of drugs to put an end to his pain.

According to a new survey, up to 60 percent of Dutch pediatricians say they would honor that request, were such a step legal.

In fact, a smaller but significant number of pediatricians -- up to 28 percent -- said they would be willing to resort to lethal injection in such cases even when parents did not agree with their child's wish to die.

The survey comes on the heels of the so-called "Groningen protocol," issued in March by two Dutch physicians who contend that newborns with defects that cause them severe, chronic pain should, in certain cases, be euthanized.

For some here in the United States, the growing acceptance in the Netherlands of either euthanasia or physician-assisted suicide (where doctors supply patients with the pharmaceutical means of death) is troubling. Some critics worry that a child's right to life may be overshadowed by the notion that their condition is a burden to their families and the medical system.

"There's this sense of 'We just want it to be over,' which means that these kids can be shuffled off early," said Stephen Drake, research analyst at the American anti-euthanasia group Not Dead Yet, which advocates for the rights of severely disabled individuals.

Dr. Joel Frader, a professor of pediatrics, medical humanities and bioethics at Northwestern University, Chicago, said it would be wrong to take the results of the latest Dutch study too seriously, however.

He pointed out that the pediatricians interviewed in the study based their answers on hypothetical vignettes, not real-life situations.

"I don't think these findings are very meaningful," he said. "It's a well-established notion in social science that what people say they will do in response to hypotheticals is often quite different from what they will do in actual practice."

In the study, published in the May issue of The Journal of Pediatrics, researchers led by Astrid Vrakking, of Erasmus MC, Rotterdam, posed a series of imaginary scenarios to 63 pediatricians, either specialists or general practitioners. Each vignette involved young patients suffering from painful, terminal cancers.

In one scenario, both the patient -- aged 15 or under -- and his/her parents, agreed that lethal drugs were required to help end life and suffering. In a second scenario, parents disagreed with their child's wish for euthanasia or assisted suicide. In a third scenario, parents made the request for lethal drugs on behalf of an unconscious child unable to make the decision for themselves.

In the first scenario, where both parents and conscious child are in agreement, "a total of 48 percent to 60 percent of pediatricians were willing to use lethal drugs," with acceptance rising along with the age of the patient, the researchers report.

In the second scenario, where only the child requests such action, acceptance among pediatricians fell to between 13 percent and 28 percent, based on the patient's age.

And in cases where parents made the request on behalf of an unconscious child, 37 percent to 42 percent of doctors said they would agree to initiate life-ending procedures.

At the current time, euthanasia for children aged 12 to 16 is legal in the Netherlands when the child's parents agree to his or her request. Minors aged 16 or 17 can legally request and receive euthanasia based on their decision alone, although the child's parents must be informed of that decision. Euthanasia and doctor-assisted suicide for children under 12 remains illegal in the Netherlands.

Euthanasia or physician-assisted suicide of all minors is illegal throughout the United States.

Drake said the latest findings out of the Netherlands came as "no surprise," given the recent call by two Dutch doctors to legalize the euthanasia of severely disabled newborns.

In the March 10 issue of the New England Journal of Medicine, Eduard Verhagen and Pieter Sauer of the University Medical Center, Groningen, said they were "convinced that life-ending measures can be acceptable in these cases under very strict conditions."

Unlike the hypothetical cancer patients in this latest study, "these were not terminally ill patients," Drake pointed out. "They were patients with spina bifida. That also meant that [Verhagen and Sauer] used an expansive concept for 'suffering,' because kids with the same level of involvement here in the States who are alive now wouldn't necessarily report their lives as being filled with suffering."

Drake said he also worries that end-of-life decisions made by children, even older children, may be too easily colored by the concerns of those around them.

"The literature that looks at children who have disabilities, or those who are dying, finds that they are very sensitive and aware of what their families are going through," he said.

"So, how much of a child's desire to die -- whether that child has a disability or an illness -- is based on overhearing the sighs outside the bedroom door of 'I can't take any more of this' from parents?" Drake said.

Frader, author of an accompanying editorial comment on Vrakking's study, said the team's survey probably doesn't reflect what Dutch doctors would do in real life. And he said it's an even bigger stretch to compare the mores and practices of European doctors to those of American physicians.

"I wouldn't dream of applying data, even actual behavioral data, from the Netherlands to the U.S., which is a different country morally, legally," Frader said. "It's just a whole different world."

He said that, in certain cases, children may be as mature and capable as many adults in making informed decisions about end-of-life care, including the right to die. "That's not merely age-dependent, either -- it's partly age and also partly built on life experience, including life experience with their illness," Frader explained.

In other cases, however, neurological problems, or psychological or developmental difficulties, mean children cannot be expected to make these decisions for themselves, even if they were legally allowed to do so, Frader said.

In an ideal world, Frader noted, pain relief would be so good that no child would ever have to face harrowing ordeals like those outlined in the study.

"However, I think that most people who take care of a lot of dying patients know that there are some cases that make everyone very uncomfortable, where the best pain or symptom control one can imagine is inadequate to deal with the patient's suffering," he said.

Still, Frader said the slow expansion of patient types categorized as acceptable candidates for euthanasia by Dutch authorities and physicians gives him "reason to be worried."

"The extension of euthanasia to larger and larger groups in the Netherlands has led to some worrisome practices that suggest an intolerance of disability," the Chicago ethicist said. "I think this is an area where one needs to be concerned about the undue extension of what's become a legalized process."

More information

For more on end-of-life care, head to the National Library of Medicine.

SOURCES: Stephen Drake, M.S., research analyst, Not Dead Yet, Forest Park, Ill.; Joel Frader, M.D., professor, pediatrics, medical humanities and bioethics, Feinberg School of Medicine, Northwestern University, Chicago; May 2005 The Journal of Pediatrics

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