Just last year I attended a dramatic reading of ancient texts about mortality. What fun, right? But it drew a full house of over 1,000 people to San Francisco’s ornate Castro Theatre. It also left many of us in the audience on the brink of tears. I watched with a sense of wonder both at the superb performances and at the size of the crowd. What were all these people, old, young, in-between, doing here? Thinking and talking about our mortality is not something most humans easily do. It may even be against our nature and we tend to live in denial until forced to confront it.
I’ve spent decades wrestling professionally, personally, and sometimes publicly, with issues surrounding death. I landed in San Francisco to finish my professional training as the AIDS epidemic exploded and became an urgent issue in medicine, public health, and politics. People died too young. Protests and medical meetings erupted in heated emotional outbursts. I volunteered as a board member of AIDS organizations, attended international AIDS conferences, and wrote widely on related topics while drafting local, state and national HIV policy. I co-founded an ethics journal and two networks for ethicists and others dealing with dying, and I consulted at local hospitals on difficult patient cases and deaths. I became a trained hospice caregiver. None of this was planned. I was just lucky enough to be able to help spark and harness a wealth of expertise and credibility among many compassionate physicians and others, who would mostly say “Yes, let’s try this” - over and over.
After an also-unplanned near-death experience of my own involving a wayward truck, I trained to volunteer at the Zen Hospice Project for more hands-on caregiving experience. The Project had been established prior to the AIDS era, but quickly became a central HIV care and teaching institution. I can vividly recall some of the patients I met there during my time first as a caregiver and then as a director, some from over 20 years ago. They were my teachers.
Of the many issues related to dying, “physician-assisted death,” which I saw could be both practiced and ethical, kept arising. Medical societies such as the American Medical Association and the California Medical Association quashed any efforts to legalize the practice. Politicians would understandably say, “If the doctors themselves don’t want this legalized, why should we do it?” But this stalemate seemed counterproductive and unrepresentative to me, so I conducted and published the first survey of physicians, which indicated a majority support for a legal option. I then co-authored clinical guidelines for this practice, which appeared on the front page of The New York Times in a story they titled “Guidelines for the Unthinkable.”
It remained “unthinkable” for a long time. Subsequent efforts to liberalize the law failed. The CMA even refused to debate the issue until 2015 when a new legislative proposal and internal medical advocacy forced a reconsideration, based on more survey data showing physician support and evidence from other states that physician-assisted death could be performed without feared harms. In fact, evidence showed that it even improved general end-of-life care in some aspects, that it could actually extend life by reassuring dying people they don’t have to take some sort of “preemptive strike.”
After heated debate, the CMA finally removed their opposition - by a vote of at least 3-1, which shocked many of us in the room. Things had indeed changed, and the new law was soon passed on to and then signed by then-Governor Jerry Brown, who stated: “I do not know what I would do if I were dying in prolonged and excruciating pain. But I am certain that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”
His words on the front page of the next morning’s San Francisco Chronicle again almost moved me to tears. But later that morning, when I asked a classroom of medical students what they thought of the issue and the new law, the first question was, “Why was that illegal in the first place?” This was a lesson too. Time flies, and things evolve and change, sometimes even for the better. In 2020 there will be the first-ever clinical conference on assisted dying, co-sponsored by our San Francisco Marin Medical Society. This would have been impossible, even illegal, not so long ago.
During my career, I have seen, for whatever combination of reasons— demographic, epidemiological, financial, political—that death and the way that happens is much more talked-about, as if a taboo is slowly dissolving. Sections of bookstores that used to contain only a couple titles now burst with books on every aspect of dying, death, and thereafter. Young people contribute via collaborative community projects, expansive conferences, and festivals dedicated exclusively to conversations around death and dying.
Medical professionals increasingly recognize that they tend to desire less intensive, death-denying interventions at the end of life for themselves than they’ve been trained to provide for others. The medical profession now includes more training on the care of the dying. Advance directives, allowing patients to specify how they wish to be treated, now proliferate in type and use. Progress in the legalization of alternative methods for pain management can be at least partly traced to use and potentials in patients facing mortality. Fear and policing of dependency on or addiction to approved medications at the end of life has declined dramatically. The still relatively new specialty of palliative care is one of the most heartening developments in the field. Hospice care is increasingly seen as a crucial resource. New professions such as “death doulas” have arisen. People even talk about innovative and “green” ways for their bodies to be treated after death.
In 2019, new concerns around death arise. A looming ecological meltdown forces ever more people to consider that we ourselves and countless other species face growing risk of annihilation. Our healthcare system still stinks in too many ways. Baby boomers are now entering their final years in increasing numbers. For most of us personally, death can still be scary, sad, and mysterious, and will remain so to at least some degree. What we do know is that becoming familiar with dying while we are alive can make it less frightening when we actually face it.
Virtually every religious/spiritual tradition counsels awareness of impermanence, at least of our bodies. But that’s challenging stuff. At some of our earlier gatherings about death and dying, people lamented low turnout, wondering why more didn’t come for the excellent presentations and warm camaraderie. I reminded attendees that we were at least to some degree “freaks” for even being willing to talk about this stuff. Last year I sat in a packed theatre with a thousand freaks. What’s next? Maybe this essential and inevitable fact of life is becoming a bit less isolated, hidden, denied, and feared. And that is an utterly worthwhile and valuable goal and gift.