What Is Palliative Care? An Interview with Dawn Gross

Dawn Gross, MD, PhD, is a hospice physician at University of California, San Francisco (UCSF). Her background is in hematology and immunology, and she now works for the hospital’s Palliative Care Service, specializing in treating patients facing life-altering illnesses and end-of-life. We spoke with Dawn about the importance of palliative care, as well as how the health care system can make the most of this vital, often underappreciated service.

Liz: Can you tell us a bit about your background?

Dawn: I went to Tufts Medical School and did a combined MD/PhD with a focus on immunology. At the time I really thought I was going to be a scientist, not a clinician.

And then my first rotation as an intern in internal medicine was on bone marrow transplant, which I thought would be a good clinical correlate for the type of research I was doing. What I quickly realized was how much I loved being with these patients, the courage they displayed in facing fairly certain death. They were risking procedures for the possibility of being cured.

So there was something life-altering for me in that. I quickly chose to specialize in hematology and bone marrow transplant. During my fellowship at Stanford, I was really impacted by how people around me didn’t really talk about when people were dying. I referred many people to hospice, but it was Hospice with a capital H—I had no idea what it really meant, and had no exposure to it. There was no end-of-life training in my medical school or residency training or fellowship.

But I started to have more and more end-of-life conversations with people, for whatever reason. I became a bit of a black sheep in my field! And towards the end of my fellowship, my father became terminally ill with cancer, and then my mother also became ill. It was all at the same time. I felt like that was a sign for me to pause and reconsider. After my father died, I really started to reevaluate what I wanted to be doing.

I met a physician through a group called Finding Meaning in Medicine. He was the medical director for a hospice. He took me under his wing, trained me, and became my Obi Wan Kenobi. I started to work in hospice with him, and now have been doing that for over five years.

So I was grandfathered into hospice and palliative care, which is a new subspecialty. I also had become familiar with the Zen Hospice Project during my own grief and bereavement, and I eventually joined their board and have helped grow the work they do, including collaboration with UCSF. I’ve worked with UCSF on inpatient palliative care service for the last two years, and it’s been incredible.

Liz: Many people aren’t aware of what, exactly, palliative care signifies. What is your brief, comprehensive explanation when people ask you about palliative care?

Dawn: I describe it as: We are a team of people who are here to offer, first and foremost, symptom relief, whatever that symptom may be, so we can then help focus on what people who are facing a life-altering illness wish for. The illness is not necessarily life-limiting; it can be terminal, but it does not have to be. This is where education comes in.

Liz: Why is palliative care important?

Dawn: I think it is because of how medicine has developed, where we have become more and more specialized. In many ways we have become experts on pieces of people—our patients—as opposed to looking at them as a whole person.

In the hospital, you’ll have someone who knows everything about the heart, and someone else who knows everything about the kidney or the brain, and the next thing you know you’ve picked this person apart and no one’s put them back together again. That is the charge of palliative care in the hospital: to always retain that perspective.

One of the primary things palliative care does in the hospital is symptom management. We’re experts who think outside the box about how to make someone pain-free or stop someone’s severe nausea. Based on the disease trajectory and prognosis, we can also anticipate what symptoms will likely show up, be prepared and circumvent them.

We actually save hospitals a lot of money. We save them from doing expensive care that isn’t consistent with the patient’s wishes, or from keeping the patient in the hospital instead of at home where they prefer. We help focus on what the patient does want, and not waste time getting there.

Liz: Do you have any stories or experiences to share that might illuminate what palliative care does for patients?

Dawn: It’s funny: I was having lunch with a colleague, a palliative care fellow, at a little restaurant. There was a woman sitting next to us who thanked us for the work we do, and she shared how she herself was recently diagnosed with cancer, quickly following with, “It’s curable!” The fellow and I smiled and thanked her, and we both suggested to her, “When you go for your chemotherapy, please consider requesting a palliative care consult.” And she immediately said, “You didn’t hear me—it’s curable!”

This just demonstrates the lack of understanding about what we do. And that’s not just laypeople, but also clinicians. There’s literature out there that talks about how clinicians think we are the Grim Reaper, or call us hospice and don’t know the distinction. And many laypeople have never even heard of palliative care.

When we’re consulted in the hospital, patients and families will ask, “What is it you actually do?” These are the biggest stumbling moments for medical students and residents. It’s a real conundrum: What do you say that won’t scare someone? People will immediately think they’re dying, and won’t want to talk to us.

It’s amazing, though; once you start to share with people what it is we do, it’s like, who wouldn’t want this? I tell people I feel like I am a fairy godmother. My charge is to discover what people wish and to make their wishes come true. That’s what I get to do all day!

What never ceases to amaze me is what people wish for, given their circumstances. The very first time I asked that question, as a hematology fellow, I was meeting with a woman diagnosed with myeloma. She was vey depressed and withdrawn, not looking me in the eye, giving me maybe one-word responses. I couldn’t figure out how to connect. I had a moment of desperation; then literally out of nowhere, I said, “If I had a magic wand—and I’m not saying I do—what would you wish for?” My immediate reaction was that she would ask to be cured. But that’s not what she said at all. She looked me in the eye for the first time and said: “Make my anxiety go away.”

In that moment, I realized the power of that question, and the power of not knowing. To not assume I know what this person actually wanted; to be curious enough to try and ask the question and discover the answer, it suddenly became my calling. Palliative care didn’t exist at that time, but that was me practicing palliative care, in that moment. I just didn’t know it.

Liz: What is the state of palliative care in our health care system? Do you feel like changes need to be made?

Dawn: I think we only need more. I heard Tom Daschle speak about health care transformation, about trying to make our health care system more agile, more efficient, and better quality with less cost. Hospice and palliative care are actually doing that. We don’t need to reinvent the wheel here. If hospitals and health care are looking for ways to provide quality and affordable health care, turning towards hospice and palliative care will give great insight and instruction.

In the future, palliative care will not only exist in every single hospital as an inpatient consult service, but also in an outpatient setting. It certainly exists in many clinics now, but I also envision its natural extension into the patient’s home.

These are the things palliative care in particular is designed to focus on. The whole person, inside and out. To be in that person’s home and see what it’s like. These are things that matter in human beings’ existence—to be in their life, truly living. The hospital is not set up to do that. So this is where I see palliative care moving.

Liz: You mentioned that medical school didn’t necessarily prepare you for dealing with end-of-life. Do you feel like this is something that needs to be addressed more in education?

Dawn: There’s no question that education in the realm of care is desperately needed. That being said, at UCSF I see that that’s already starting to change. I can’t speak for nationwide, though it certainly seems that UCSF is not an isolated experience, that there is curriculum at the med school level in existence, but with lots of room for improvement.

It has to be hands-on. There’s only so much you can teach with a book. At UCSF we have med students and residents rotate with us on palliative care consult service. It’s the most popular rotation! Who would’ve thought? But I’m the first to tell you we are the happiest service, which is ironic for those who don’t get it.

What never ceases to amaze me is what people wish for, given their circumstances… I realized the power of that question, and the power of not knowing. To not assume I know what this person actually wanted; to be curious enough to try and ask the question and have me discover it, suddenly became my calling.

So there’s great room for clinical education; and there’s education for doctors already in practice. So much of my time is spent educating my colleagues in other subspecialties. I can say, as a hematologist, we are the worst of the worst when it comes to referring people to hospice care! We don’t know how to have these conversations.

Liz: What words of advice can you leave for our SevenPonds readers, who may be facing end-of-life?

Dawn: The first thing I would offer is to reach out. Find someone who can really listen and really be with you. This is such an intense and disorienting experience, even if you think you’ve gone through it before. Some things may be familiar; and yet each time, it will be unique. So I think it’s important to not be alone and make sure there’s someone really present for you. Often, this can be palliative care or hospice, or the primary physician who’s known you for years, or the oncologist who’s been seeing you through scary times. Or if you’re religious, whoever your religious or spiritual guide is. It doesn’t have to be someone with an MD after their name. It’s someone who can listen profoundly, and just be.

Once you find that person, I think it’s less scary and it’s less overwhelming. Realize that there are many people out there. You want to be with people who will say, “I’m here with you. I’m not going to leave.”

I would also love for people to feel empowered to get what they wish for, and to not feel like they are put into the middle of a huge medical system that they don’t know how to put the brakes on. I want them to feel they are king or queen of what’s happening, and that they really get to say what matters and not be afraid. Just know that there’s palliative care in the hospital available to help advocate and support you through, to make sure you get what you wish for.

Liz: That’s wonderful to hear. Thanks for speaking with us, Dawn!