The review of 203 Dutch patients with ALS -- commonly known as Lou Gehrig's Disease -- shows that 20 percent of them chose to end their lives with the help of their doctors, says a report in tomorrow's New England Journal of Medicine. Most chose euthanasia, in which the physician administered a fatal drug, but a few opted for assisted suicide, in which the patient carried out the act. The same study found a 10 percent incidence of assisted death among patients with terminal cancer.
The study was done to allay fears about the deliberate ending of life, which became legal in the Netherlands last month, says Dr. Leonard H. van den Berg, a neurologist at University Medical Center in Utrecht and leader of the study group. Euthanasia was illegal until then, but no Dutch physician was prosecuted for the act.
"There was a television program two years ago that gave the impression that euthanasia was being done right after the diagnosis of ALS," van den Berg says. "In my opinion, that was not true. Patients choose euthanasia only in the last stage of the disease."
But an accompanying editorial by two American psychiatric experts in the field of physician-assisted death says the numbers in the journal report are a subject for concern.
"Judging from our clinical and research experience with patients with ALS and cancer, the rates of physician-assisted deaths [reported in the study] -- 10 percent among patients with cancer and 20 percent among patients with ALS -- are unacceptably high," write Dr. Linda Ganzini of the Department of Veterans Affairs Medical Center in Portland, Ore., and Dr. Susan Block of the Dana-Farber Cancer Institute in Boston.
"I would be concerned by those statistics," adds Estelle Rogers, executive director of Death With Dignity National Center, a Washington, D.C.-based organization. "But I would be hesitant to suspect their motives without knowing more."
There are a number of ways to end life prematurely, Rogers adds. Life-support systems can be cut off, a deliberate overdose of pain-relieving drugs can be given, or the physician can simply stop treatment.
In Oregon, the only state in which physician-assisted death is legal, the law says that a patient must self-administer the life-ending drug and that the action cannot be taken until the doctor says the patient will die within six months, Rogers says. In the four years since the law became effective, almost all patients who have used it have had cancer -- 87 percent. There have been "very few ALS patients" among the other 13 percent, Rogers says.
In the Dutch study, the decision to end life was not associated with level of education, quality of medical care, level of pain or despair, van den Berg says.
"The only difference was religion," he says. "Patients who said religion was more important in their lives were less likely to die prematurely."
The Netherlands is the only country in which physician-assisted death is legal. In the United States, an attempt to legalize it in Hawaii was defeated in the state legislature earlier this year, and a referendum to allow it was voted down in Maine last year.
"Physician-assisted death may be an acceptable alternative option of last resort for a very small number of terminally ill patients," says the journal editorial. "At this point, we do not know what rates of physician-assisted deaths are appropriate. High rates would suggest that the procedure is not just being used as a humane approach to eliminating intractable suffering at the request of the patient."
The best-known American advocate of physician-assisted death, Dr. Jack Kevorkian, is serving a 10-to-25-year sentence in a Michigan prison for the death of an ALS patient. Kevorkian's lawyer, Mayer Morganroth, is appealing the sentence in both state and federal courts. His contention: The trial was unfair because, among other things, the judge wouldn't allow eyewitnesses to testify.
"A physician has the right to administer medicine which will alleviate pain and suffering, even if it causes death," Morganroth says.