On a spring afternoon at the Mill Valley Library, more than fifty people filled the Creekside Room to talk about death. Leading the discussion was Dr. Dawn Gross, UCSF Palliative Medicine Physician, who also hosts the KALW radio podcast series, “Dying To Talk.”
I spoke with her on the phone the week after the workshop.
Tell me about your journey to focus on death and dying.
When I went to medical school, I did so as a scientist. I had no interest in practicing medicine. My father was an administrator for Kaiser Hospital and he told me the doctors hated him. What kind of people would hate my father? I didn’t want to be one of them.
My scientific mentors steered me toward an MD and PhD, in immunology. When I finally started seeing patients, what I learned was counterintuitive. Don’t touch patients. That made me second guess myself.
I was on a clinical rotation when I first witnessed a patient about to die, and I was ready to burst into tears. I left the room, went into the hallway, and cried. The supervising clinician found me and said, “Don’t ever do that again. And don’t think I don’t go home and cry every night.”
But later that year, I watched a doctor leap onto the exam table next to her patient and put her arm around her. Oh, I thought, you can do that?
I picked the subspecialty of bone marrow transplants, because every single patient is a new immunological puzzle. I had no med school training in bone marrow transplant, and it was a steep learning curve. I started seeing people die and I was a deer in the headlights. We knew they were going to die, but we didn’t talk about it. I remember this one young man, seeing him on rounds. When we walked out of his room, my attending said, he’s going to die. I was thinking, what did he see that I didn’t? But what stayed with me most was that we didn’t tell him that he was dying.
We didn’t talk about it as a team after he died. It didn’t occur to me that we could do that. We didn’t have the language.
Around that time, my father became terminally ill, and that shifted my orientation.
I remember my father saying to me, “why is no one asking me what I want?”
He knew he was dying, and I realized that he had started an advance care conversation with me when I was a child. One day he had taken me to work, at Kaiser in Oakland. “Dawn, I want to show you something,” he said. “When people are walking down the halls, they aren’t looking at the signs, they’re looking down at their feet. I decided we should paint lines on the floor.” We stopped where the pink and green diverged. Pink was maternity. Green was intensive care. “Dawn,” he said, “I need you to know I would never want to go down the green line. I would much rather the time and money go toward my grandchildren’s education.”
At the time, I wasn’t thinking about the end of his life. I was thinking, oh, he expects grandchildren. I felt the weight of that responsibility.
For reasons I attribute to my father, I came to learn about this new specialty, hospice and palliative care. It didn’t exist when I was in medical school.
When was that?
2008 is when hospice and palliative care became a formal specialty. So fast forward, when my father died, I stopped everything. I was in the thickness of grief, and I had no resources. I reached out to the VITAS Hospice, and met the medical director, who became my mentor. “You clearly have a hospice heart,” he told me. He took me under his wing and trained me like an old-fashioned apprentice. I saw patients with him, watched his every move.
I felt like, this is what I’ve wanted to do all along. I found my people.
I’m very much a supporter of your approach, and getting people to talk about death. But is there evidence to support that?
There is. The palliative care field is looking at this. Asking questions like, did so-and-so die in accordance with their expressed wishes? The likelihood that that will be the case is correlated with whether they had conversations prior to their death. They found that those who did had better experiences than those who didn’t.
This is also true for the surrogate decision-makers, who often wonder if they made the right choices.
(Note: This study from the Dana-Farber Cancer Institute found that cancer patients experienced less anxiety and depression when they had end-of-life conversations.)
You work with patients who are dying. How do you balance compassion/empathy for your patients with taking care of yourself, not getting too caught up in loss. I know a cancer doc and one of her challenges is getting too emotionally invested in patients.
I reject that thinking, that physician burnout is because of being too emotionally involved. Yes, I was taught to separate my emotion, put boundaries between my patients and me, but I don’t agree with that approach.
So are we making progress in terms of getting more people talking about death? On the one hand it seems like there’s so many people and groups doing amazing things. On the other hand, most of it is invisible to mainstream society.
Well, we don’t always get a full house like we did in Mill Valley. We do see, however, that a lot of people are hungry to engage in this conversation. We have to address the challenge that for many, the word death is a turn-off.
We have to look at more accessible ways to explore end-of-life. For example, there’s this group, Reimagine End of Life, that’s hosting a week of events this fall in San Francisco. Art, music, comedy, spirituality, dancing in cemeteries, plus advance care planning. There’s a culture-changing movement going on. The first gathering was here in San Francisco in 2016. It brought together the entire spectrum of ages. There’s a millennial mindset. With the arts as an entry point.
We recently led a workshop at a high school in Oakland. Death Ed. Like sex ed, but for death. When we first approached the school, I expected they might be hesitant. But the kids were engaged.
We have to reject this assumption that death is an inappropriate subject for kids. We’re not born afraid to talk about death. We’re born curious. Kids look at their pets that have died and in that moment, they want to understand what it means. It’s how we as the adults in the room respond that makes the difference.
I remember when, as a child, our cat died, and my father told us we were fortunate that our cat came home to die with us.
Death is something sacred. Something that brings us together.
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