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.
