AIDS' IMPACT ON THE RIGHT-TO-DIE MOVEMENT

First published in Colorado's AIDS Newsletter, Resolute!

Not to be reprinted or reproduced without the permission of the author.

The road to the U.S. Supreme Court is paved with P.W.A.'s. In January the Court will hear the cases of Washington v. Compassion In Dying appealing from the 9th Circuit Court ruling; and from the 2nd Circuit Court of Appeals, New York v. Quill. The question at hand: "Whether the State may prohibit physicians, completely and under any set of circumstances, from providing competent, terminally ill adults with the means medically necessary to choose the exact manner and timing of their death."

Just as Kevorkian has shaped the cultural perception of this issue, so has the AIDS epidemic. One of the three doctors who challenged the New York laws is Howard Grossman whose caseload is 50% HIV. He has served on the board of directors of the Gay Men's Health Crisis, and also marked with ACT-UP. It was AIDS activist Larry Kramer who urged him to join the lawsuit.

Not only are several of the defendants in these cases PWA's and their doctors, but rational and assisted suicides have become a common part of the AIDS underground.

SEEDS OF CULTURAL CHANGE

The ingredients of cultural change were sown in an epidemic impacting young gay men. These men, as a group were affluent, well educated and activist. As gay men they hadn't the luxury of life on autopilot with a suburban wife, two kids, and a minivan. They had already been forced to confront themselves, their families, and society with their homosexuality. So now they approached being sick in a whole new way: they were pro-active. They questioned. They didn't accept authoritarian edicts. They expected their doctors to be collaborators with them whereas many of the elderly allow their doctors to be paternalistic, and tell them what to do. In fact, a now classic study of long-term survivors found that PWA's had fired at least one doctor. And the majority took it upon themselves to be educated about the virus, the immune system and the myriad of treatments out there to choose from. This attitude carried over into the dying process. Control queens want to control their own deaths as well as their lives!

In addition, these men were gaining extensive experience with dying. Some have had more than one partner die of AIDS, and been the primary caretakers. A San Francisco study published in 1991 found by that time the average PWA had lost 9 close friends. One of my clients knows 103 people who have died. Another talks of traditional Thanksgiving gatherings at a Mexian resort of forty men, now dwindled down to less than a half dozen. Another man shows me a photo of his motorcycle club with all but a few faces whited out. As of June, 1996 the CDC has reported 319,849 deaths nationwide since the onset of the epidemic, 3,352 in Colorado. For many within the AIDS community the number of personal losses has been likened to living in a war zone.

These men have an extraordinarily intimate and immediate knowledge of what it means to die, and what the process involves. They do not necessarily accept the hospice view that all pain is controllable. In fact, a recent JAMA article talks about how AIDS pain is often under treated. They also know that dying with dignity is not about pain. It is about suffering, and suffering can take many forms that compromise quality of life.

One of the defendants in the New York case was Willy Barth, a patient of Dr. Grossman. Willy was not depressed, and was not in pain. He had his family around him, and had reached a comfortable closure with them. Yet he lay bedridden with KS, crypto, and CMV for eight weeks waiting to die. He kept asking Dr. Grossman, "How much longer is it going to take?"

The Medical Director of San Francisco General's AIDS Clinic, Dr. John Stansell, has been quoted as saying, "The simple fact is that there are some patients for whom we cannot make death a tolerable process." He admitted writing prescriptions for opiates and barbiturates for several patients who were near death until admonished by his superiors for going public.

So now we have three ingredients for cultural change: (1) a large number of young, affluent, educated individuals, (2) who are assertive and proactive, (3) who have a lot of experience with death. Now add a fourth ingredient: a sense of community. The AIDS community is, in fact, a community. It has this newsletter, and a wealth of others as well. It has two slick, national magazines. It has support groups, and a plethora of professionals and agencies catering to the needs of PWA's. In addition, are empowered groups like ACT UP, Gay Men's Health Crisis and Denver's PWA Coalition. Those who are isolated haven't searched very far for resources. That same study about long term survivors, also found the people who did the best also had models for how to do it, knowing others infected and farther along than themselves. And within this community its own values and protocol developed for suicide. It became so much a part of the common experience that a movie was made about it last year: Its My Party.

THE EXTENT OF AIDS SUICIDE

It is difficult to assess the extent of hastened and aided death among the PWA population. A 1988 study in New York City found the suicide rate among PWA's 66 times higher than the general population. And a more recent study ('95) in Louisiana found the suicide rate 134.6 times higher. However, many of these deaths don't constitute a "rational" suicide. For instance, many in the New York study killed themselves within the first nine months of diagnosis. I have, in my own clinical practice, seen many men depressed and suicidal when they are asymptomatic. This is a reversible condition in contrast to the man who is close to his inevitable demise from multiple infections, who wants to control how it happens.

How many of these suicides are actually like this last scenario? An indication is how many are assisted. Most aided deaths involve loved ones or physicians when the PWA can no longer do the deed without help. In a San Francisco study of 136 couples one out of nine reported giving drugs to their ill partners to accelerate death. San Francisco is probably the epitome of the culture I am describing, and it is unlikely that 11% of all AIDS deaths (35,183) were assisted suicides. San Francisco has an extensive underground of physicians, pharmacists and activists who will help, and it is common for men to bequeath stockpiled lethal drug to others after they are gone. Randy Shilts, the late author of And the Band Played On, once said, "Gay men facing AIDS exchanged formulas for suicide as casually as housewives swap recipes for chocolate chip cookies." The San Francisco Chronicle reported one man who had attended over fifty assisted deaths. On the other hand, the hinterland is not without its underground. I have talked with a man here in Denver who claims to have attended at least a dozen. In a sample of PWA's in Vancouver, B.C. Russel Ogden found 83.3% were considering rational or assisted suicide.

If it was legalized, how many PWA's would choose assistance? The Netherlands is some indication. Although it remains a crime there, it has been an accepted practice for over twenty years. The Royal Dutch Medical Association issued guidelines for the practice of euthanasia in 1984, and they were endorsed by a government-appointed commission. Doctors who follow the guidelines are rarely prosecuted. In Amsterdam the most common cause of death among men between the ages of twenty and forty years of age is AIDS. Of those with AIDS, 26% choose physician assisted suicide.

IMPACT ON HEALTH PROFESSIONALS

As the cultural shift has occurred within the AIDS community, also impacted has been those professionals who work with them. As reported at the Eleventh International Conference on AIDS in Vancouver last summer, 35% of the AIDS physicians in San Francisco reported they would help a PWA who was adamant in his request for aid in dying. That was in 1990. By 1995 the percentage had gone up to 51%. The study found the more AIDS patients a doctor had, the more likely he was to be inclined to help.

Traditionally among psychotherapists, suicide has been viewed as a sign of mental illness, and there has been an obligation to hospitalize anyone who is an "imminent danger to himself or others". The protocol was to give them a choice: either they went on their own accord, or the therapist could impose a 72 hour hold or involuntary hospitalization. This, however, became impractical with someone who was bedridden, and close to dying anyway. It made little common sense, and the trend began to change among therapists whose client specialization was HIV related. An interim don't ask -- don't tell policy ensued, in which a client would be advised that if he was serious about taking his own life, he was not to discuss it further or the therapist would interpret his bringing it up as a desire to be prevented. This approach, as well, was undesirable as it left the client isolated without professional support for a very important decision.

In 1993 the National Association of Social Workers came out with a policy statement which condoned their clinicians "to participate or not participate in assisted suicide matters or other discussions concerning end-of-life decisions depending on their beliefs, attitudes, and value systems." It went on to say that if the professional couldn't do so, he/she had an obligation to refer the client to someone who could.

In 1996 James Werth, Ph.D. published his book, Rational Suicide? which outlined a criteria that the majority of mental health professionals could accept as indeed "rational". The criteria involves: an unremitting, hopeless condition, a decision made as a free choice, and a sound decision-making process by an individual who has been assessed as competent. This criteria was used by a psychiatrist to evaluate one of Kevorkian's patients, and is becoming the standard for such evaluations.

BACK TO THE SUPREME COURT

Dr. Werth is a principal author of the amicus (friend-of-the-court) brief submitted to the U.S. Supreme Court on behalf of the Coalition for Mental Health Professionals, which includes among others, the American Counseling Association, the Washington State Psychological Association, and the Association for Gay, Lesbian and Bisexual Issues in Counseling. Also signed on in Denver is this columnist, and Dr. Richard Martinez, a psychiatrist at the C.U. Medical Center. The brief addresses the question, whether mental competence can adequately be assessed. Can motivations for assisted suicide be differentiated between that which is rational from other clinical conditions such as depression, dementia, psychosis, or post-traumatic stress disorder? We believe the answer is "yes".

Also filing amicus briefs in favor of the respondents are the Gay Men's Health Crisis, Lambda, and the National Coalition of PWA's. Lined up on the other side of the question are prolife activists, and the conservative establishment of organizations including the American Medical Association, the American Psychiatric Association, the American Hospice Association, and not the least influential: the solicitor general representing the Clinton Administration. The President of the American Association of Homes and Services for the Aging, Sheldon Goldberg, describes this case as "the most important case the Supreme Court considers this decade. Almost any family in this country could be affected by its outcome."

On the other hand, for PWA's the impact will be much like the legalization of abortion was. Will they continue "back alley" suicides? Ramon Martinez, 26, who works for Bay Positive in San Francisco , a peer advocacy group, observes the only consequence of a decision against physician assistance: "For me, it means that because of what the Supreme Court says, I may not be able to have the people I love with me when I die."

Stay tuned: The court will hear the case in January, but is not expected to have a ruling until June.

FOR OTHER ARTICLES ON THIS SUBJECT BY THE AUTHOR:

"Dignity Dead in Committee"

"Self Deliverance as a Security Blanket"

"Fear of Dying"

"Assisted Suicide -- Gone Wrong"

FOR OTHER WEB SITES ON THIS SUBJECT:

Last messed with November 15, 2001