The National
Spinal Cord
Injury Association

Disability in the News

Death Raises Questions About Disabled, Right To Die

(May 12, 1998 11:44 a.m. EDT http://www.nando.net) A weight-lifter and motorcycle racer in the prime of life has an accident that paralyzes him from the neck down. He is dependent on others for everything. He wants to die.

Should society allow him? Even aid him?

These are the questions medical ethicists, legal experts and the disabled are facing as they wonder if Matt Johnson, a 26-year-old man from Aptos, Calif., did the right thing in paying a visit to Dr. Jack Kevorkian.

Johnson was pronounced dead at a Michigan hospital Thursday night after Kevorkian -- Angel of Mercy to some, Dr. Death to others -- dropped his body off.

The young man had been a quadriplegic since a motorcycle accident last August. His friends said he felt like a burden to his family and talked constantly about dying. Facing the prospect of living what he felt would be an intolerable life, and lacking insurance, he enlisted help from Kevorkian.

As several states consider making doctor-assisted suicide legal after Oregon became the first state to do so last year, some wonder if only people with terminal illnesses should have the right to seek that help.

"Many people with severe, disabling chronic illnesses do suffer in many ways worse than people with terminal illnesses because there's no end in sight," said Faye Girsh, executive director of the Denver-based Hemlock Society.

But health experts and disabled advocates are troubled about expanding the right to assisted suicide to people without terminal illnesses, even though Kevorkian has helped them often.

"There is a lot of bias and misinformation about disability," said Arthur Caplan, director of the Center of Bioethics at the University of Pennsylvania. "Society may simply say, 'If you're disabled, why not use the physician-assisted suicide option?' "

Once the line is moved, it's difficult to define the limits, said Alex Capron, director of the Pacific Center for Health Policy and Ethics at the University of Southern California.

"If we're going to accept that your subjective feelings are enough to warrant the administration of something that kills you, then there will be no limit," he said.

Kevorkian has been moving the line but without much public reaction because the changes have been incremental, Capron said.

"He really is doing something radically different than the initial description of what this was and why it might be justified," he said.

While Kevorkian's early cases, starting in 1990, involved the terminally ill, he has progressed to people with multiple sclerosis, AIDS, even arthritis. His first known quadriplegic case was Roosevelt Dawson, a 21-year-old Michigan college student, in February.

"The only public service he does now is to make it clear that if we have a legalized system, it will be impossible to draw the line," Capron said.

Without universal access to health care, doctor-assisted suicide may become an option of first rather than last resort, said Caplan.

"People who have a choice today may find themselves subtly pushed or coerced tomorrow," he said. "I'm worried about people saying, 'Your care is going to cost a lot of money, Grandpa. Haven't you thought about assisted suicide?' "

The American Medical Association, which has consistently opposed assisted suicide for ethical reasons, has realized that inadequate end-of-life care may be a major factor in patients wanting to end their lives early.

On Monday it launched a two-year project to educate doctors on topics such as pain management, psychiatric needs and communication skills.

Although the pace of physical and mental recovery from a spinal cord injury such as Johnson's varies greatly, most agree that several years are needed to adjust to anew way of life.

Studies have shown that more than 85 percent of quadriplegics were satisfied with the quality of their lives, even though more than half had contemplated suicide at some point, according to Stephen Drake, an organizer for Not Dead Yet, a Chicago-based group of disabled people formed two years ago to oppose legalization of assisted suicide.

Johnson's feelings of worthlessness were as much a result of social forces as psychological ones, said Paul Longmore, director of the San Francisco State Institute on Disability.

"Here's a guy who's sort of an alpha male. He goes from being that high-status person to becoming among the most devalued people in society, a person with a major disability," he said. "This is a devastating blow to his identity, to his sense of self worth. But where does that come from? We're socialized to think of people with certain disabilities in a certain way."

The question for Longmore is what society's response should be to someone like Johnson, who wants to die.

"Should it be, 'Yeah, we'll support you in dying'? Or do we want to say, 'We want to combat that kind of prejudice'?" he said. "Typically, the reaction is, 'If I were in your situation, I'd want to die, too.' That's social sanction for him going to someone like Kevorkian."

NSCIA's Position on Assisted Suicide

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