Summer 2018

What Matters Most

Tufts alum Dawn Gross on why hard conversations about life and death are so important to have right now.

By Courtney Hollands

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End-of-life conversations can illuminate the here and now in wonderful ways, says palliative care and hospice physician Dawn Gross, a School of Medicine alum. Photo: Timothy Archibald

Dawn Gross really wants to talk to you about death—but she’s far from morbid. “As you start to have these conversations,” she said, “you realize that even if it’s in the context of imagining the end of life and how to support someone who’s dying, what you’re actually talking about is what matters most to a person while they are very much alive.” Though it’s hard to envision Gross, M96, SK96, a soulful Bay Area-based palliative care and hospice physician, doing anything else, she studied neuroscience and psychology as an undergrad and entered the Tufts M.D./Ph.D. program in the early 1990s, expecting to emerge a brain surgeon. (She even had a license plate that read BRNMD2B, or “Brain M.D. to be.”) Switching to immunology, Gross was the sole student researcher on a breakthrough that identified the precise cause of an autoimmune reaction in the arthritic joints of patients with Lyme disease.

Yet her experiences caring for hematology and bone-marrow transplant patients during an internship year at Tufts Medical Center and a fellowship at Stanford University—coupled with a period of intense reflection following her father’s death—led her to ponder big questions, and ultimately to her current career. Today the mother of three is an attending physician in the University of California San Francisco’s Division of Palliative Medicine and host of the KALW radio show “Dying to Talk,” on which she and expert guests grapple with the nuances of end-of-life conversations. On her campaign to encourage people to have these discussions early and often, Gross is writing a book and is co-creator of Death Ed, a high school course on the subject. Ahead, she talks about listening deeply, how doctors can stay attuned to patients’ wishes, and the power of magic wands.

Photo: Timothy Archibald

You started the M.D./Ph.D. program at Tufts, intending to become a scientist. What tipped the scales to medicine?

I did the first two years of medical school, went off to graduate school, and then showed up as a third-year med student with the confidence of a Ph.D. under my belt. As I was finishing the clinical years, my husband, Andy, M96, was four years ahead of me in his medical training at Tufts Medical Center. He really knew the lay of the land and started to see things I might be interested in. He also knew my immunology interests and had me come shadow him on bone-marrow transplant one day. Suddenly, I saw the science in every single patient—it was pretty cool. That’s when being a doctor and a scientist really clicked.

How did Kellie Sprague, your mentor for the bone-marrow transplant rotation you did at Tufts Medical Center, influence your career?

Kellie was the first person to make a dramatic impression on me of what a doctor could be. She was a human being—a whole human being connecting to patients. Most of our bone marrow patients stayed in the hospital for a long time. Often, because of the isolation precautions, we were really their only contact with the outside world. And so the relationships we built with patients were unexpected and changed my perspective on what it meant to be a doctor. Not only was I interested from a scientific perspective, but these very human relationships were unfolding before me.

During your fellowship at Stanford, your dad became terminally ill. Did that set you on the path to palliative care?

The first year of fellowship was the really intense clinical year. When you’re dealing with a population of really sick people, a lot of them die. We never talked about it as clinicians, ever, but it was absolutely affecting me. So I started to ask patients questions that no one else around me was asking: Why do you want to live? Why do you want chemotherapy? Why do you want a bone marrow transplant? And I wasn’t asking them because I was opposed to offering any treatments. I just needed them to really know how it could go. As I started asking these questions, it just so happened that my father became ill.

My father had been very clear from my childhood about what mattered most to him. One day while we were walking down the halls of Kaiser Hospital, where he was an administrator, he showed me how he painted color-coded lines on the floor to guide visitors. He pointed out how the pink line went to the delivery room and the green line went to the intensive-care unit. And he stopped and said: Now I need you to know something, Dawn. I would never want to go down that green line. If I were ever that sick, I need you to know that I would much rather have the time, energy, and money spent on my grandchildren’s education. What he really ingrained in me were the things he deeply valued: family, children, legacy, and education.

When he did become sick, my father was deeply conflicted—he wanted to honor my mother, his wife, and her desire to have him fight for his life. At the same time, his values never wavered—now that he had grandchildren, he knew how he wished for his time, energy, and money to be spent. He was the one who actually called his primary-care doctor and requested he be referred to hospice. He chose to receive hospice at our home on a Friday. And then it was Saturday, Sunday, and my father died. So all of that was happening at the same time I was asking patients these radical questions: My father was teaching me how to listen in ways I hadn’t been taught in med school.

How can medical school better prepare students for end-of-life conversations?

There are certain clinical rotations required to graduate med school. One of them is ob-gyn. While 50 percent of the population isn’t involved in the clinical application of ob-gyn, 100 percent of us will be touched by death. It’s the human condition and yet there isn’t a single mandated class, lecture, or rotation experience on this subject. You can imagine it two different ways: It becomes a single class thrown in with everything else, or we constantly incorporate it in everything we do. Making palliative care an integral part of curriculum signals that it’s as important as learning how to take someone’s blood pressure.

To renew your medical license, you have to demonstrate that you have enough continuing medical education credits in pain management. But there’s no CME requirement for end-of-life management. What would it be like if we all needed that? That’s a culture shift. That’s a paradigm shift. That’s a health-care system shift.

In a 2015 New York Times op-ed, you wrote the “only time doctors are left with nothing more we can do is when we fail to ask.” How can physicians stay attuned to their patients’ wishes?

Medical students and residents are taught a structure for writing medical notes. It starts with chief complaint, abbreviated as “CC.” My dream is that instead of the chief complaint, it’s “CW,” or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people. It changes their experience of how they’re cared for because now it’s aligned with what matters most to them in life, and not what’s wrong. It still ultimately addresses what’s getting in the way, which is perhaps an illness—it’s not making our training irrelevant. It’s just aligning it in a way that actually is consistent with keeping a person engaged in his or her life.

How do you view your role on a person’s health-care team?

I tell people I feel like a fairy godmother—I’m there to make people’s wishes come true. The palliative care field has been described as the Grim Reaper, the death squad, you name it. But I don’t experience it that way at all. It’s an absolute gift. I feel that I get far more out of it than I possibly can give, because I get to dwell in these incredible conversations of discovering what’s essential and then focusing on that. I’m there to highlight that we are all still very much alive. I know how to care for you and—most importantly at the very, very end of life—your family, however you define them. How do we navigate that relationship moving forward? So I’m very much about life.

What do you mean by supporting the family, however a person defines it?

I play a game called Go Wish with my patients, my colleagues, my family, total strangers. It’s a way to help people dive into this conversation very quickly. It’s a simple deck of 36 cards with single phrases on them and you ask people to talk about the cards that matter to them. And so anytime someone picks the “to have my family with me” card, I immediately ask them who they consider family; I don’t assume. So often, people say: well, you know my mom, my dad, my brother, my best friend. Or it’s much less straightforward: actually, not my mom, but my stepmom. So I never assume I have any idea what anything means, particularly a word as loaded as “family.”

Was there a time when discovering what was important to a patient surprised you?

That happens a lot because I ask a particular question: If I had a magic wand, what would you wish for? You might think people would ask to live forever, or to cure their diseases. But every single time I’ve asked it, those aren’t the answers I get. It’s always instantaneous and could be: I want to be with my family. I want to go sit in my garden. I want to go fishing. And that’s where the fairy-godmother thing really started to show up—I can make these things happen.

For one woman on her eighty-ninth birthday, I actually did bring out a wand. I asked: What do you wish for? And she said to be young again. What would you do if you were young again? She said she’d go shopping. She was happy for me to just pull out the newspaper and circle grocery-store coupons. It’s an opportunity to give people context outside out of what they think doctors want to hear and put them back into their lives—which is the only place that matters.

How can end-of-life conversations inform the here and now?

My favorite author is Antoine de Saint-Exupéry. There’s a quote in The Little Prince that my children know I want for my epitaph: “It is only with the heart that one can see rightly; what is essential is invisible to the eye.” The practice of getting at what is essential and then being able to share that with the people around you so that they can indulge you and envelop you in it—that’s a glorious life. And when you can do for that for the people around you, I don’t know what more I could hope or wish for.

Why did you start a radio show?

While I love—and will always love—having one-on-one conversations or one-on-five conversations with people and their families, I have a desire to let more people in on it. Radio is an incredibly powerful platform. Not only do you reach a lot of people, you can be in dialogue, and people can eavesdrop.

Dawn Gross embraces her youngest son, Kalel. Photo: Timothy Archibald

In one “Dying to Talk” episode, your family—husband, Andy, and your two eldest children, Josh and Isabell—joined you on-air to play Go Wish. What was that like?

That is my favorite episode, the one I’ve received the most feedback on. I had my kids each sort the Go Wish cards for my husband ahead of time, narrowing it down to what they thought were his top three cards; my husband also sorted the cards for himself. But the actual discussion and comparing of cards was live. You can hear my daughter becoming emotional. She was trying to imagine her dad not being there—who wouldn’t get emotional about that? The cool part was watching Andy listen to his children talk about him in the past tense. It changes how you think about your relationships, how you communicate, and how you view what matters. That’s why I say these are present-tense “affecting your life and your relationships right now” conversations.

You’ve played Go Wish with your kids for years. How young is too young to start talking about death?

If you observe little kids, they notice when things are not alive, and they talk about it. That’s not something that they are wired to be afraid of. Then something happens in young adulthood, where it becomes completely taboo and inappropriate to talk about. So I don’t know that there actually is too young an age. I think there are age-appropriate conversations and there’s a way to keep what’s naturally there open and developing, as opposed to getting narrower and shutdown by the time you reach adulthood, when we suddenly lose the ability to talk about death or don’t even know where to start.

Dawn Gross, wearing her winged white coat. Photo: Timothy Archibald

What do you hope high school students get out of the Death Ed course?

The schools gave us two hours for the pilot—an hour one day and an hour another day. Ultimately, we decided our objective was to help students learn to talk about death now and keep talking about it—that’s the takeaway. We wanted to play Go Wish on day two, so day one became about identifying the problem, naming the problem, and figuring out how to get healthy teenagers wanting to talk about death and the end of life.

You have wings embroidered on the back of your white coat. Why?

I like to surround myself with things that remind me of who I am, what I do, and what I love in life. I think I’ve always gravitated toward wings and the idea of being free. There’s truly something in the power of flight, and the power of wings to, in a sense, embrace and hold and even protect. When I started to do hospice work, the experience of people dying wasn’t what it had been when I was a hematologist. Dying was expected; it wasn’t a failure or something wrong. I had wings sewn into the back of my white coat to symbolize the continued presence of people I have cared for and served. I know who’s got my back. They’re all with me, guiding me.

 

Students play Go Wish in the Death Ed class Dawn Gross and Jessica Zitter led at Brightworks school in San Francisco. Photo: Timothy Archibald

Mortality 101

In designing their high-school Death Ed course, Dawn Gross and her colleague, critical and palliative care specialist Jessica Zitter, received the following advice from their advisory panel (i.e., their teenage children and their friends): make it interactive, show videos, and use candy whenever possible. With this advice in mind, the doctors developed a two-day curriculum they plan to make available to schools across the country:

DAY ONE

Create context through candy. Students receive candies and Gross and Zitter explain what each color represents: red is a parent or sibling, yellow is a pet, and so on. If a student knows someone who died, he or she puts one of that color candy in a glass jar that’s passed around the classroom. When she holds up the filled jar, students always notice the same two things, Gross said. “One is that there’s every single color in the jar, and two, there are more candies in the jar than there are people in the room.”

Photo: Timothy Archibald

Separate fantasy from fact. Because most of what passes for end-of-life education today comes from the media, Gross and Zitter show a clip from the TV drama Grey’s Anatomy when the title character is brought back to life via medical heroics. Students “know it’s not real, but they don’t know why,” Gross said. To illustrate the reality of life-and-death decisions, they then screen Extremis, an unflinching Netflix documentary. “Certainly, teens cried—but they all came back for day two,” Gross said.

DAY TWO

Consider their priorities. Students are split into groups to identify and discuss the Go Wish cards that are most important to them. They then write the statements on Post-it notes and affix them to the white board, grouping like ones together. “And they step back and look,” Gross said. “There were a couple cards that students care about universally, but mostly, they were across the board. It just shows there’s a lot to talk about and that you can talk about it.”

 

TUSM Leads the Charge

In 2016, Dr. Atul Gawande, co-chair of the Massachusetts Coalition for Serious Illness Care, approached School of Medicine Dean Harris Berman about collaborating on curriculum changes concerning end-of-life care. Berman has since met with the academic deans from the state’s medical schools to kick off the conversation about how best to train students in end-of-life discussions with patients.

In addition, the School of Medicine plans to introduce a new curriculum in the fall of 2019. Rather than a single class, a “Patient Experience” thread—encompassing end-of-life and palliative care, advanced communication, and impact of health on patients and their families—will follow students through all four years of medical school.

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