What I Did for Love

(Jim Van Buskirk is a FEN coordinator for Exit Guide Services and frequent contributor to FEN’s quarterly magazine.  A longtime HIV activist and AIDS survivor, the Rev. Elder Jim Mitulski is a United Church of Christ and Metropolitan Community Church minister. He is currently pastor at Peace United Church in Duluth, MN. – Jay Niver, editor)

When I joined Final Exit Network in fall 2018, and began volunteering as a regional coordinator shortly thereafter, I was completely unaware of the long history of the right-to-die movement.

Some months ago, my filmmaker friend Lauretta Molitor mentioned that she had footage from the 7th biennial conference of the World Federation of Right To Die Societies, which took place in San Francisco in April 1988. She had recently rediscovered the U-Matic tapes, but was unable to view them in their antediluvian format. All she had was the rudimentary log, which included an interview with Derek Humphry, who in 1980 co-founded the Hemlock Society and in 2004 Final Exit Network. From 1988 to 1990, he was president of the World Federation of Right to Die Societies and is currently president of the Euthanasia Research & Guidance Organization (ERGO).

When I contacted Derek, he generously offered to pay the costs of digitizing the tapes, well over $1,000. Unable to plan what to do with them until they were viewable, we waited impatiently for Bay Area Video Coalition to finish the project. After many months, Lauretta brought over the files and as we watched, we were returned to the height of the AIDS crisis and its role in the ongoing RTD debate.

Particularly poignant among the panelists was the presentation by Dr. Stephen Yarnell, a gay psychiatrist with AIDS. Having been brought to the conference from his sickbed in a wheelchair, he trenchantly argued from a personal and ethical perspective for the legalization of euthanasia. He observed that if the ballot initiative had already passed, “I think I would have been seriously discussing with my physician whether to wrap it up.”

This was a reference to the California Humane and Dignified Death Initiative, supporters of which were desperately trying to collect enough signatures to place it on the November 1988 ballot. Despite the efforts of Americans Against Human Suffering, a group founded by Robert Risley, a Los Angeles lawyer whose wife died of cancer, it never reached the voters. Then-Assemblyman Willie Brown was among those who called the idea “crazy.”

Yarnell confessed that he kept an overdose of pills at his home and had seriously considered suicide a couple of weeks ago, until he realized he couldn’t bring it off, because “I couldn’t even hold down a sip of water.” It was then that “I began to appreciate the notion of people who shoot themselves in the head.”

Another powerful interview, sensitively conducted by award-winning journalist Jeanne Carstensen, was with Randy Boyle, a gay hospice worker and Hemlock Society member, eloquently balancing his professional and personal experiences with AIDS patients. “I just think it’s real sad that the people that oppose the initiative, if they had experienced some of the suffering, seen what the AIDS virus does to people, I think maybe they would be more compassionate. I can’t understand why people would be against someone ending their own life when they’ve gone through so much pain and suffering,” he says.

Four months later, both of these handsome, articulate men were dead.

On the final tape, Derek Humphry reiterates that supporting another person’s taking of their own life is a traumatic event, requiring courage, trust, and understanding: “Offering moral support is the ultimate act of love.” He invoked the example of soldiers during WWII, who mercifully shot their dying comrades. His thoughtful words inspired me to revisit the hit song from the 1975 Broadway musical A Chorus Line, now hearing the anthem in a completely different context:

Kiss today goodbye, the sweetness and the sorrow, wish me luck, the same to you,
But I can’t regret, what I did for love, what I did for love.
Look, my eyes are dry, the gift was ours to borrow. It’s as if we always knew,
And I won’t forget what I did for love.
Gone, love is never gone, as we travel on, love’s what we’ll remember …
Kiss today goodbye and point me toward tomorrow. We did what we had to do.
Won’t forget, can’t regret, what I did for love …

My friend, the Rev. Elder Jim Mitulski, was pastor of the Metropolitan Community Church through the 1980s and ’90s. Founded by and for gay people and their friends and family members, MCC was located in San Francisco’s Castro neighborhood, the epicenter of the AIDS epidemic. It was dubbed by journalists “the church with AIDS” because so many funerals took place there. The church lost about 500 members to the disease, and Mitulski recounts that many illegal deaths took place because of the inertia and opposition to this proposed legislation:

“I learned first-hand about the importance of intentional self-deliverance, and was intimately familiar with Derek Humphry’s book Final Exit. I reviewed it for ALERT (AIDS Legislation Education Research Treatment) newsletter and it became like our bible, given the lack of other information available. I accompanied many people on their final journey, in some instances in which they themselves or their friends, families or healthcare providers provided various kinds of assistance. It is a period that has yet to be fully written about, in part because of legal issues, in part because of the stigma that surrounds the topic even all these years later.”

Recently, before Mitulski could be interviewed on the topic, the interviewer (in order to obtain Institutional Review Board approval) had to consult with an attorney for clarification on the legal status of hearing a story of assisted suicide and where the line might cross into murder. Mitulski continues:

“I went to a theologically liberal seminary, which meant we were mostly taught not to judge people and to assure people that nothing could separate them from God’s love. But we never got specific or clinical. Nothing in seminary prepared me for what I was experiencing first-hand as a pastor. There were two words we were taught about the moral and ethical implications: ‘suicide’ and ‘euthanasia.’ And we were led to believe it was something we would rarely encounter.

“But I was serving a gay church in the middle of a neighborhood that was more affected by AIDS than any other zip code in the country, and it was nearly always a terminal disease. People died painfully, usually within a year or so of diagnosis. Is it assisted suicide if a person is given extra doses of morphine or other drugs if they are within a few week of dying anyway? Legally and morally, we had no vocabulary or training for these situations.”

Because he had already learned to reinterpret the Bible, debunking it as a source of oppression and seeing it as a tool for liberation, especially in regard to homophobia, Mitulski applied the same lens in regard to alleviating suffering for those facing death with an incurable illness.

“There is nothing valorous or improving about suffering. Self-determination in the face of death is another kind of liberation.” He listened to the hospice workers and nurses who all knew what could be done if a patient desired to hasten their inevitable death. “There was at the time a gentleperson’s agreement among an informal network of nurses, doctors, and police officers, women and men who would sign off on the paperwork of any death at home when a person had AIDS, avoiding a coroner’s investigation. It was a conspiracy of love. I was often a witness, a spiritual companion, as people made their transition. They usually dressed up: leathermen in full leather regalia, a church deacon in full ecclesiastical garb. They were surrounded by a lover or by lovers and friends. Many lesbians helped gay men. Some prepared for self-deliverance by stockpiling pills, but often just the knowledge of the option was enough to sustain them, and they never used it. Here’s where I learned the truth of the Bible verses, ‘love is stronger than death’ and ‘love never ends.’

“I did address it in sermons as it was happening, assuring people who felt guilty that it was okay to help our loved ones who requested our help if we felt comfortable doing so. We even had a stained-glass window with a familiar image to Christians of a bread and a cup, signifying Holy Communion, called ‘The Last Supper’ window, contributed by someone who had arranged an intentional self-deliverance gathering with friends and family. We in the church knew the double meaning of the window.”

Someday Mitulski hopes to tell a fuller story about how gays and lesbians became pioneers in the self-deliverance movement.

As if to buttress Mitulski’s testimony, I recently heard yet another story about someone during the AIDS crisis who ended his partner’s life by smothering him with a pillow. Unfortunately, the man had not been emotionally prepared for the resulting trauma, suffering both psychological and physical symptoms for several years.

The recordings of the 1988 conference, which will be added to the Hemlock Society papers held at the University of Washington (Special Collections), provide an unexpected time capsule, highlighting what has – and has not – changed in the right-to-die movement in the intervening decades. Even the conference site, the Cathedral Hill Hotel (built as the Jack Tar Hotel in 1960) was demolished in 2013 and is now the site of a California Pacific Medical Center facility.

Flash forward nearly 30 years: The California End of Life Option Act was enacted in June 2016 to allow terminally ill adult California residents to access medical aid in dying by self-administering lethal drugs, provided specific circumstances are met. The law was signed by California Gov. Jerry Brown in October 2015, making California the fifth state to allow physicians to prescribe drugs to end the life of a terminally ill patient, often referred to as “physician-assisted suicide.” In May 2018, a state trial court ruled that the law was unconstitutionally enacted, but the following month, the law was reinstated by a state appeals court and affirmed by the California State Supreme Court.

On Oct. 5, 2021, Gov. Gavin Newsom signed SB 380 into law, to take effect in January 2022. Key improvements include: reducing the mandatory minimum 15-day waiting period between two oral requests for aid-in-dying medication to 48 hours for all eligible patients; requiring that healthcare systems and hospices put their Medical Aid in Dying (MAiD) policies on their websites; clarifying that the first oral request must be documented in a patient’s medical record, even if the physician chooses not to support the patient in the option. The nominally progressive state’s law also includes a sunset provision, meaning it will expire on Jan. 1, 2031.

Whatever progress is being made in this important arena is slow and arduous, unfortunately necessitating the continued support services of Final Exit Network.