A life-or-death decision - the indecision of gay and lesbian rights groups on their stand on physician assisted suicide for terminally ill patients

The scene has played itself out countless painful times in sterile hospital rooms and familiar bedrooms across the country. A gay man dying of ADDS, a lesbian succumbing to cancer, both desperately wanting the struggle to end, both thinking of asking someone to help them die. These are people who when healthy fought for their privacy', for their right to love whom they wanted and for the freedom to control their own bodies. So why not fight for this same right when it comes time to die?

It's a logical question but one many gays and lesbians have avoided asking. As the Supreme Court heard arguments January 8 in a pair of cases that looked at whether terminally ill patients have the right to ask a doctor to help them kill themselves, most prominent gay rights organizations stayed out of the debate. Their absence was particularly noteworthy because in most instances gay and lesbian groups forcefully articulate that another issue about control over one's body--the right to have an abortion--clearly is a gay issue.

"We don't have an official position [on assisted suicide]," says Helen Gonzales, public policy director for the National Gay and Lesbian Task Force. In contrast, the NGLTF has staked out public views on affirmative action, welfare reform, and immigration policy. David Smith, a spokesman for the Human Rights Campaign, the nation's largest gay rights lobby, says the subject doesn't fall into the HRC's top priorities of securing AIDS funding and fighting for gay and lesbian rights. "It's not an issue we're working on," he says, adding that the HRC's board has never discussed the subject and is not likely to do so.

But if physician-assisted suicide isn't viewed as a gay issue now, it should be, say AIDS activists who have been part of 4be coalition fighting for such a right. "Self-determination is such an important thing, especially for us," says Howard Grossman, a gay New York physician with a large AIDS practice who is a plaintiff in one of the Supreme Court cases. "The right to a supportive relationship with their physician is a problem for gay men and lesbians, period."

"Having that sense of self-control is even more important as the lesbian and gay community enters its second and third generation because most of these people will not have children and many of them won't have their natural families to care for them," says A. Cornelius Baker, executive director of the National Association of People With AIDS. "If we're engaged in redefining the society in which we live--how marriage is viewed, how family is viewed--I don't think we can be absent in how death is viewed."

Catherine Hanssens, AIDS project director for Lamb da Legal Defense and Education Fund, a New York City-based gay and lesbian advocacy group, says she sees "this right as very closely related to the right of reproductive choice." Hanssens puts the issue in intensely personal. terms: "I think that anybody who has been intimately involved in caring for or watching a loved one with end-stage ADDS or end-stage cancer tends to feel strongly that this an important right to be recognized."

The right to decide when and how to die is especially important for those in the last stages of AIDS, say those closest to the issue. People with AIDS led a revolution in health care because they demanded to take an active role in their treatment. "They really brought to the forefront the importance of self-determination and autonomy [in their medical care]," Hanssens says. Besides pushing the federal government to move faster on drugs and treatments as well as pressuring pharmaceutical companies and the medical establishment to pay heed to their concerns, people with AIDS also have been in the vanguard of the assisted-suicide movement.

The two cases the high court heard--one from New York State, the other from Washington State--directly involved either people with AIDS or doctors who care for those with HIV. These advocates joined with other right-to-die groups such as the Hemlock Society, "Everybody talks about it, these end-of-life decisions"' Grossman says, noting that every AIDS patient he's worked with has discussed the issue, "extremely few people opt for any kind of assistance."

Much of the AIDS activism over physician-assisted suicide came before the encouraging developments of 1996, a year in which researchers showed that combinations of old and new drugs could suppress HIV in many people. But rather than forcing them to re ink their support for the right to assisted suicide, AIDS activists say, the good news on the drug front has only convinced them further that the right is needed. "We're really coming to terms with how many people [the new drug therapies] aren't going to help," says Gary Rose, treatment and research coordinator for the AIDS Action Council, a coalition of AIDS service organizations that filed a friend-of-the-court brief in the Supreme Court cases. Adds Baker: "For those for whom the drugs aren't working--who are proceeding rapidly downhill with this disease--they may want to make this choice, and this choice ought to be available for them."

Grossman, for one, says he has given much thought to whether the drug-treatment advances should change his position on physician-assisted suicide. He has spoken with patients who a year ago were very sick but today are much healthier because of the drug therapies. "Without exception, they said, 'If I had chosen to kill myself, then it would still have been my choice. If my life had been that bad, then I would have wanted to have that option,'" Grossman says. "With any serious illness there could be something right around the corner, and that's something to factor in when you think of killing yourself."

But as Grossman and others stress, the people affected by assisted-suicide laws are those who know they are about to die. It's a matter of ending your life days or weeks earlier than it would otherwise end, not of asking for a doctor's help in killing yourself shortly after receiving an AIDS diagnosis. However, beyond those who believe that any type of suicide is wrong, many opponents of physician-assisted suicide base their arguments on the question of boundaries: Who will decide when it's appropriate for someone to ask to end his or her life? Moreover, they argue that laws condoning suicide might encourage people with expensive conditions such as AIDS to kill themselves.

These are some of the same questions and concerns AIDS activists have confronted in their own circles. The first time Baker proposed that NAPWA endorse the right to physician-assisted suicide, which he prefers to call assisted death, the group's board said no. "Our mission is to help people survive, and I think we are no different from the many people who feel that assisted suicide is a defeat of life," Baker says. The board eventually accepted a modified proposal.

At Lambda, Hanssens says she tried to get a number of different ADDS and disability organizations to sign on to a Lambda-sponsored Supreme Court brief supporting the right to physician-assisted suicide. In the end, though, only New York City's Gay Men's Health Crisis and five individuals connected to the disability community agreed. "It's an intensely personal political issue," Hanssens says. "Getting an organization to agree and follow through on participating in this case is probably one of the harder things to ask an organization to do." Hanssens adds that she would not criticize organizations for staying out of the fight.

While AIDS groups have grappled with the issue, the debate over it hasn't even occurred in other gay and lesbian political or health organizations. For example, until The Advocate called, the Washington, D.C.-based Mautner Project for Lesbians With Cancer not only had not taken an official position on the matter but also didn't have any resources to give its volunteers when confronted with a client who asked questions about suicide. Says Mautner executive director Bev Baker: "We're there to provide support, to be good listeners."

Kathryn Kendell, executive director of the San Francisco-based National Center for Lesbian Rights, says her organization also has not taken a stand on the issue, although the center, like the HRC and the NGLTF, among other groups, has taken a policy position calling the right to abortion important in the struggle for gay rights. "With abortion there's a clear link to sexuality issues," she explains, adding that while assisted suicide is a privacy issue as well, it doesn't have a clear connection to sexuality.

Even though many gay and lesbian organizations have stayed out of the suicide debate, Rose says it's not too late. "We may see a bill in Congress this year, or we may see any one of a number of states try to pass laws forbidding physician-assisted suicide beyond what the Supreme Court does," he says, acknowledging that the questions from the justices pointed to a possible ruling that would kick the issue back to the states. "The political piece of this is just starting."

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