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This article ran in The Boston Sunday Globe, September 3, 2000. It is reprinted with permission of the author.

A battle waged in Boston: right to die vs. will to live
photo: Daniel Robert and Nadina LaSpina, NDY Protesters
As the Hemlock Society hosts a summit of allied groups, the Not Dead Yet disability activists voice their fears

Photo: Tom Olin

by John B. Kelly.

John B. Kelly is a graduate student at Brandeis University and a member of the Statewide Independent Living Council. He uses a wheelchair.

Because we're all going to die, the discussion this weekend in Boston is unavoidably relevant.

Inside the Park Plaza Hotel, the US-based Hemlock Society is hosting the biennial meeting of the World Federation of Right-to-Die Societies whose mission is "promoting cooperation between organizations working for the individual's right to self-determination in dying."

Across the street, the disability activist group Not Dead Yet, cosponsored by 16 local and national organizations, is protesting what founder and president Diane Coleman, who is herself disabled, called "a wolf in sheep's clothing: the trappings of compassion, but the reality of corporate greed -- and social contempt for ill and disabled people who are seen as expendable."

In the United States, suicide is not illegal, all medical treatments may be refused, and pain-relief is available even to the point of sedation. The right-to-die movement argues, however, that suicides are often botched, refusing treatment may take too long, and pain relief is inadequate. The movement believes that only barbiturates can deliver what Faye Girsh, Hemlock's executive director, described as "a peaceful, gentle, quick, and certain death in the presence of loved ones, free of life-prolonging methods."

Although such views are challenged by medical and hospice professionals, the hot core of this weekend's debate concerns eligibility criteria, the meaning of choice, and the likelihood of abuse.

Oregon's recent law (and Maine's ballot initiative this November) limits assisted suicide to mentally competent people diagnosed as "terminally ill," a technical term signifying six months or less to live.

The federation, though, includes everyone "incurably" or "hopelessly ill," equally technical terms for diseases (and, by extension, severe disabilities) that pose no imminent threat to life. In this view, long since implemented in the Netherlands, illness and disability are seen to cause such poor quality of life that death may become the preferred option. Yet many disabled people live with these conditions and consider their lives eminently fulfilling.

Despite the Hemlock Society's oft-stated support for the Oregon model, Not Dead Yet equates its agenda with the federation's. It points to the public pledge by Dr. Richard MacDonald, Hemlock's medical director and the federation's incoming president, to qualify "all competent adults, suffering severe and enduring distress" and to Girsh's commitment to "every person with an incurable illness and unbearable suffering." When that crucial word "terminal" is left out, people with severe disabilities become instant candidates.

Girsh has also compared Dr. Jack Kevorkian to Rev. Martin Luther King Jr., while Hemlock cofounder Derek Humphrey described Kevorkian as a helper of "terminally ill persons," who "performed voluntary euthanasia in what reasonable people would consider justifiable, compassionate circumstances." Yet more than 70 percent of Kevorkian's clients, with conditions like multiple sclerosis and arthritis, were not terminal. Some were not even identifiably ill. Not Dead Yet policy analyst Stephen Drake said, "If criteria and controls are so important to the Hemlock society, why weren't they the first to press for Kevorkian's conviction?"

A conference panel on disability and assisted dying was canceled after the organizers and Not Dead Yet failed to agree on a format. The panel's moderator would have been Paul Spiers, a scientist at MIT scientist, and a Hemlock member who is a paraplegic.

Spiers agreed that some of Kevorkian's patients "were not per se terminally ill," but held that "you can't choose for other people how they apply their freedom of choice."

For Spiers, the suicide candidate must have proper counseling to determine "that what they're making is a rational, knowing, and intelligent decision."

He cited the experience under Oregon's Death With Dignity law. Rather than being motivated by factors like poverty or pain, people described as "decisive and independent" chose death for such reasons as the loss of autonomy and control of bodily functions.

The disability rights movement has long argued that when disabled people direct the assistance they receive, including in the bathroom, they retain their autonomy. Seizing on "dignity" as a coded attack on disabled people's lives, Not Dead Yet's protest flier reads, "We don't need to die to have dignity."

It is highly questionable whether motivations to commit suicide can be separated into rational and irrational categories. Such a choice will always fall within a social context. After his spinal cord injury, Christopher Reeve decided to live because his family openly wanted him. If his family had verified his initial suicidal feeling, this now successful author, speaker, and director might have chosen "rationally" to have his respirator shut off.

The Oregonian reported last year that Kay Cheney, diagnosed as terminally ill, wanted the option of suicide "in case she was in bad pain or if the indignities of losing control of her bodily functions became unbearable." After the first psychologist found her incompetent, a second assented despite concerns about a coercive family.

One day, after a colostomy bag leak, she resolved on the spot to die, but changed her mind. Would that have been a "rational" decision? Then, the afternoon she returned after being sent to a nursing home for a week, she considered her alternatives and decided to die. Her family facilitated her request that day. With adequate home care, a less burdened family, and the social acceptance of incontinence, perhaps she might have reached an opposite decision.

Humphrey considers no such alternatives in his latest book, where he suggests we "allow these people to die, if they have no alternative to a nursing-home existence and this is what they want. Their lives would conclude with dignity and self-respect, and one measure of cost containment would be in place." Indeed, "economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice."

The legalization of assisted suicide would of course allow health maintenance organizations, with their profit-driven concerns, to enter the debate. Ralph Nader declared last month, "I don't think HMOs, employing physicians and able to kill off someone who may be depressed or feels that she or he is a burden on their families . . . should take advantage of any physician-assisted statute."

Coleman foresees an explosion of abuses, as greed and conflict-of-interest lead providers to offer the cheapest treatment: suicide. "Isn't it naive to think that the health system could legalize this and then spend money on good health care?", she asked.

Spiers argues that these are problems of application that can be solved, but as a principle, "the right to choose your own death is universal." Coleman and Not Dead Yet contend that the application can only be -- indeed already has been -- a reflection of and source of more prejudice and discrimination against disabled people.

"I could imagine a society in which we could have a new dialogue about whether this could be considered as a social policy," Coleman said, "but our society is very far from that because of our health care systems, long-term care systems, and the crushing oppression of people with disabilities of all ages."

Posted Sept. 9, 2000. This article originally ran in The Boston Globe.



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