Pandemic to Pandemic: A Career in Palliative Care

Steven Pantilat, MD

“Let me get that for you—I really appreciate you taking

care of my friend.” I was an intern on call at San Francisco General Hospital, the year was 1989, and I had just admitted another young man with Pneumocystis carinii pneumonia (PCP) to 5A, the AIDS ward. I was ordering a midnight meal in the small café to take a brief respite from the emergency room that we fondly called “the mish,” when I heard the voice behind me. As we chatted, the man shared that his friend’s older brother also had AIDS. The only two sons in a working-class family from the Midwest, they had both moved to San Francisco just a few years earlier. Their parents did not know they were gay or had AIDS. Tears welled up as I considered the tragedy unfolding in slow motion for this family. Their story was a familiar one.

I arrived in San Francisco to start medical school at UCSF in the fall of 1985, four years after the first report of a new illness that would come to be known as AIDS. As surprising as it may seem now, at the time I did not realize that so much of my training in medicine would come to be defined by my experience caring for people with AIDS or that providing that care would fundamentally define and transform my career. At the time, people with AIDS faced stigma, fear, and homophobia broadly and from health care professionals. Health insurance applications from single men in certain zip codes were inexplicably lost. Amidst it all, young people, disconnected from family that couldn’t or wouldn’t accept their lives, found community and comfort with new families made up of friends; these communities remained their steadfast support even as they were devastated by this nearly universally fatal illness.

And all the death. Early studies showed poor survival from PCP with mechanical ventilation. We had to learn how to talk with young men about agonizing choices about end of life. When family did arrive, it often made the situation worse. Many parents learned that their son was gay and dying of AIDS in one fell swoop. Partners and friends were excluded from the bedside by families that were in shock, angry, and biased. So often, the best we could do was provide compassion, caring and support. We learned to talk about goals of care, to encourage people to document surrogates, to sit at the bedside when it was all that was left to do. We survived through the camaraderie of practicing as a team of nurses, doctors, social workers, chaplains, and volunteers. We didn’t have a name for the care we were providing. We do now: palliative care. In 1995 the first effective antiretroviral drugs became available and radically changed AIDS. While AIDS is still a prevalent illness around the world and necessary research continues, for most people with access to medications, AIDS is no longer a death sentence but a chronic disease. While steeped in tragedy and grief, my time caring for people with AIDS was a career defining experience for which I am grateful. I learned how much I valued talking with patients about important decisions, negotiating and mediating difficult family discussions, encouraging patients to make the most of their time, offering hope for what could still be in face of overwhelming darkness, and comforting where there is no cure. These were the reasons I came to medicine. I found them in a place I did not expect.

It took a few years to give voice and form to these experiences. It was not until 1996 that I first heard the words palliative care, the name for the care we had been jury rigging. I realized that this was the work I loved and began moving my career to it. In 1999, we started our inpatient palliative care service at UCSF to formally provide the kind of care we had seen have such a profound impact. In 2005 we started our first outpatient palliative care clinic and, along with services across San Francisco, the Bay Area, California, and the US, have been growing ever since. Thankfully, AIDS is no longer a common diagnosis among our patients seen in palliative care and today we care for people with a range of serious illnesses including cancer, neurodegenerative diseases, chronic lung, liver, kidney, and heart disease, and many more.

“The most important thing for me is to be with my family at the end of life.” My patient had interstitial lung disease. He previously said he would want to come to the hospital to treat an infection and now was reconsidering in light of rules that severely limited visitors in the hospital. Many of our palliative care outpatients faced the same agonizing decision about whether to come to the hospital if there was any chance they would die there alone. This was March 2020 and memories of the 1980s came flooding back in the face of a new pandemic. While the Covid 19 pandemic is very different than AIDS, there are similarities. Even in the early years of the AIDS epidemic,