NEW YORK, Sep 30 (Reuters) -- A majority of patients with the fatal neuromuscular disease amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) say they would consider assisted suicide, according to a report in the October 1st issue of The New England Journal of Medicine.
"Many (patients) would request a prescription for a lethal dose of medication well before they intended to use it," report a team of researchers in Portland, Oregon, led by Dr. Linda Ganzini of Oregon Health Sciences University. In 1994, Oregon voters approved the Oregon Death with Dignity Act, clearing the way for the legal use of physician-assisted suicide. Delayed by court challenges, the Act was finally implemented in 1997.
Despite the enormous media coverage surrounding the assisted suicide debate, the Portland researchers point out that the level of acceptance of this option among terminally ill ALS patients "has not been studied."
ALS patients face one of the most bleak prognoses of any patient group, since their incurable neurological illness triggers a gradual, irreversible paralysis ending in death -- usually within 2 to 3 years of diagnosis.
The investigators questioned 100 ALS patients as to their opinions regarding physician-assisted suicide. All of those interviewed had suffered from ALS for an average of nearly 3 years.
According to the survey, "56 patients said they would consider assisted suicide." Most of those patients (44 of 56) said they would request a prescription of a lethal dose of medication from their physician, if such assistance was legally available.
"Only one patient, however, would take the medicine immediately," the researchers point out. "Most of the patients would reserve it for future use. These findings support the notion that some seriously ill persons gain psychological comfort from knowing that taking a lethal dose of medication is an option." The authors found that patients considering assisted suicide were more likely to be male, well-educated, and non-religious, compared with patients rejecting such an option.
In a commentary, Dr. Lewis Rowland of Columbia-Presbyterian Medical Center in New York City, noted that the Oregon state law might prove useless to many late-stage ALS patients. He explained that the law allows for the use of assisted suicide using a lethal dose of oral drugs, with lethal injection being prohibited. However, "all patients with ALS who live long enough will lose the use of their hands," Rowland points out. In these cases, "someone must administer the drug," he said, "but that would be euthanasia, not assisted suicide, and we would be on the slippery slope feared by critics of physician-assisted suicide."
Rowland calls for more research into discovering the cause of ALS, which he calls "the best hope for finding effective treatment," and legislation to expand the availability of palliative care.
This week's issue of the Journal also carries an essay by Carol Poenisch of Northville, Michigan, describing the 1993 assisted suicide of her ALS-stricken mother, Merian Frederick. The suicide, using carbon monoxide gas, was carried out with the help of Dr. Jack Kevorkian.
According to her daughter, Frederick "wanted control over her life at a time when every day was a struggle to regain control over a lost function."
Poenisch describes how, after documenting that assisted suicide was Frederick's wish, and informing family members and her minister, Frederick's son drove her to Kevorkian's apartment in the middle of the night in order to "avoid turning my mother's house into a crime scene." Her son lived out of state, "and we thought it was therefore less likely that he would be prosecuted." The rest of the family went to a motel to avoid the media. At 4 AM, they learned "that everything had gone well." And at 8 AM, their mother's death was the lead story on the television news.
"Again, we had the feeling that we were criminals who hadn't committed a crime," writes Poenisch.
Of Kevorkian, she writes, "my mother really needed his help, legal or not, and we are thankful he was there."
Poenisch now believes "that many of the hardest aspects of (the suicide) would have been eliminated if the choice she made had been legal." She is a founder of Merian's Friends, a group focused on legalizing assisted suicide in the state of Michigan.
SOURCE: The New England Journal of Medicine 1998;339:967-973, 987-989, 996-998.
