“We work together: doctors, nurses, social workers and chaplains helping people live as well as possible for as long as possible,” said Dr. Steven Z. Pantilat, in the Netflix documentary “End Game.” As the founding director of the Palliative Care Program at the University of California-San Francisco Medical Center (UCSF), Dr. Pantilat is one of the top voices in the field of palliative care, along with one of the documentary producers, Dr. Shoshana Ungerleider.
This summer, the Cambia Health Foundation hosted a community screening of the film that follows the stories of people and families living with serious illness and their experience with the health care system. The transformative film features the work being done at UCSF and the Zen Hospice Project to help patients live well and relieve suffering through palliative care.
In this episode of HealthChangers, we bring you the panel discussion that followed the screening with Dr. Pantilat and Dr. Ungerleider, led by Cambia Health Foundation president and board chair, Peggy Maguire and Mark Ganz, Cambia President and CEO.
Leslie Constans: Welcome to the HealthChangers podcast, presented by Cambia Health Solutions, where we share real stories of health care transformation from those experiencing it, and those helping to make health care more personalized. I'm your host, Leslie.
Recently, Netflix released a new documentary “Endgame.” In this film, we meet several people dealing with serious illness, and we watch as they, their families, doctors, and caregivers grapple with how the patients want to spend what could be their final days.
Dr. Steve Pantillat: There is no right or wrong answer, here. Some families, some patients in this situation will say, "I want to be home, I want to be with my family. I don't want more treatment." And that's a very legitimate decision, and there are other people in this situation who say, "If there's a medicine that might make my symptoms a little better, might help me live a few more weeks, I would like to give it a try."
LC: In this episode of HealthChangers, we bring you highlights from a panel discussion about the documentary and about palliative care. It followed a recent screening of “End Game.” The panel included Dr. Steve Pantillat, who appears in the film. He's the Chief of the University of California San Francisco's Division of Palliative Medicine. Also on the panel, Mark Ganz, President and CEO of Cambia, and Dr. Shoshana Ungerleider, one of the film's producers, who's also a physician and the founder of the End Well Symposium, a design and innovation symposium focused on end-of-life experience. The moderator of the discussion was Peggy Maguire, President of the Cambia Health Foundation. She began the discussion with a question for Shoshana.
Peggy Maguire: I want to start with you because this film is really, truly incredible. And you have dedicated your career to palliative medicine, but also to shine a light on what it is all about and how it helps people and families transform their experience. So, can you give us a sense of what motivates you? What motivated you to create “End Well,” and then produce this film?
“The majority of people don't really know their options and that they need to advocate for themselves. I feel strongly that this is a hidden public health crisis.”
Shoshana Ungerleider: The majority of my work is actually related to palliative care and end-of-life activism and less about my clinical practice. I didn't set out to be an advocate. I had several experiences really early on in my training, so my first-year residency as an intern, I did many, many months in the ICU as we all do. And I would see the same thing over and over: I would see, very often, frail, elderly patients who were being admitted to the ICU. They had multiple, chronic medical problems, and then end-stage heart failure, widely metastatic cancer, end-stage liver disease. And they were being admitted to the ICU despite the fact that nothing that we were going to do was going to help them, or reverse their underlying condition, or turn back the clock on their age. They were dying, and I realized that many of them were spending their last moments of life suffering, hidden away from the people that they loved and it didn't sit well with me. I actually didn't realize that until much later, reflecting on it, because in the moment, it's just so busy and crazy. But I think most of them didn't choose that path.
I realized that that’s the default thing that we do in this county. No matter how old you are, no matter how sick you are, you will receive invasive, aggressive medical care by default unless you opt out really loudly. And it turns out that the majority of people don't really know their options and that they need to advocate for themselves. I feel strongly that this is a hidden public health crisis.
The big two issues that stand out for me is that we aren't training our health care professionals in how to have these difficult conversations with patients. According to a survey in JAMA in 2016, 70 percent of physicians hadn't been trained to have difficult conversations with patients, which totally blows my mind. How that plays out is that critical conversations aren't taking place along the way in order to make sure that the care people receive is care that they really want and they understand.
The second thing is that the majority of Americans don't even know what palliative care is, let alone that they need to ask for it if they want it much of the time. We all know that when people are referred early to palliative care, they often feel better and they may be even live longer. So, I founded a palliative care education fund at Sutter Health to begin training all doctors in the hospital where I work in San Francisco, in communication skills training and the fundamentals of palliative care because I felt so strongly that, no matter what field of medicine you go into, you have to have a core competence in these issues.
To get back to your question about the film, I realized that shining a light into these dark places through a film is a way to empower people to make decisions for themselves and the people they love that are in line with their goals and their values, and to really spark critical conversations about what matters most to them.
There's so much incredible work happening, and it's been going on for a long time, but it's mostly siloed. Doctors talk to doctors, hospice people talk to other hospice people, insurers speak to insurers and policymakers speak to other policymakers and nobody seems to be talking to patients. Until I realized that it's because most of us, inside and outside of health care, have internalized the idea that serious illness and death is purely a medical issue. So, we keep looking for medical solutions. But I think the end of life isn't a medical issue, it's a human issue. And I wanted to create what I think is the first platform for interdisciplinary dialogue. Networking, innovating and creating new solutions where everyone is invited to the table. And whether you're a patient, a caregiver, and an artist, a social worker, or a physician, all are welcome. I wanted to break down silos and to create new partnerships for people, to bring what we would consider the more technical experts into the conversation.
So, I founded the “End Well Symposium” (an event dedicated to human-centered design and care innovation for a better end of life experience), our inaugural event took place December 7th of last year to a sold-out house in San Francisco; we're hard at work planning for 2018. People often ask me, "What's your end goal?" And I guess my end goal is to shut down “End Well” because it's not needed anymore and to get rid of the field of palliative care because it's just the way that all medicine is practiced.
PM: I want to thank you for making this film and for inspiring these conversations, and bringing an important topic to the popular platform. It doesn't get much more popular than Netflix, and I'm sure there have been a lot of people who have been transformed by watching this film. So, thank you for making it. Now Steve, you are now a star.
SP: I think I'm formally a subject, not a star. Thank you.
PM: What was it like for you to be in the film, and then to watch it back? And how would you describe your experience with patients and families when you educate them about palliative care?
“The film shows that it is possible even in very late stage illness, you can still have good days that are meaningful to you and to your family.”
SP: The experience of being in it is a little bit like when you do a role-play or you get videotaped doing a role-play. So, at first, you're very self-conscious, but then you get lost in it. And then it's just patient care, and it's falling into the familiar of taking care of patients and talking with them, and really being present in the moment.
PM: Yeah. It was amazing to watch because it didn't seem like being in the film had any impact on your interactions with the family.
SP: That's nice to hear. Yeah, honestly, I think it's pretty incredible how quickly you get lost in it. Just to get back to your other question about watching it, I think I've seen it six or seven times now, I've had the opportunity and it's still heartbreaking. I think that's what really struck me today is just how heartbreaking it is still, to see Mitra and her family and her husband. We do it every day and you think you get immune to it, but it is just heartbreaking to see it.
PM: I'm glad you don't get immune to it.
SP: Me too.
PM: I was really struck the first time we watched it, and then about the different perspectives about what matters to her, and I loved when you said, "When we think about this, we try to think about if she were able to make this decision, what would she want?"
SP: My experience about palliative care is that about half the people seem to know what it is. They've heard the word, they have some [concept] of it, sometimes it's negative, sometimes it's positive. But when we start to talk to someone about what it is and we say, "This is about helping you live as well as possible, for as long as possible," people say, "I'll talk to you. If that's what your job is, I want to talk to you." Fundamentally, that's our job. I was thinking about Pat who says ... she's crying about her diagnosis, and she says, "But I'm doing good." With tears streaming down her face. And "I want another good day," and Mitra says the same thing, "I'm going to have a good day today. We're going to have a good night." And you look, and you think, "How is that even possible?" And they did. Her sister came and they had a good night.
That's the goal, that's my goal, is how many good days can you have, and how many can you string together, and how good can you make them? And what I like about the film is that it shows that it is possible even in very late stage illness, you can still have good days that are meaningful to you and to your family.
PM: Well, thank you. Mark, I want to ask you, not that I don't know the answer, but for everyone else: how has your passion for palliative care influenced you and fueled the work of transforming health care?
Mark Ganz: Watching this film was hard. And that brought back memories of when my dad died. Sorry. That was a while ago. That was 2004, so, amazing. Thank you. But it also brought back the much less graceful exit of my mother.
I was watching the film with Mitra and her family, and the fact that even in a hospital setting that they were given, because of you and professionals like you, they were given a graceful time, even within the walls of the hospital. And Shoshana, to your comment about how many people don't get that in hospitals, my mom, she got the default. Congestive heart failure, trips to the hospital, unnecessary tests, had nothing to do with what she was doing. About three or four weeks later, she ended up in the hospital again. We didn't know that that was going to be the last time. Her heart stopped. Unfortunately, despite the fact that she had a DNR in the file, and that she had further insisted that it be posted on the door of her room, they did a full code on her. So, fortunately, she didn't come back. She had decided it was time. Her heart stopped and she went. And I would say the imperative was the experience of my parents and what our family went through.
PM: We really appreciate your leadership and commitment to this, Mark.
MG: Can I say one more thing?
MG: I think this work, it's like a microcosm of the greater challenge we face in health care in this country. God, if we can change the game with how people experience and go through an injury, recovery from injury, illness, recovery from illness, or healing a different way where you don't recover from the illness, we can do it in this most poignant part of a person's journey. Perhaps it will turn doubters and cynics and skeptics into people of hope that we can do this across the entire span of the health care continuum. Because, good heavens, I know it can happen. And this is a great place to start. And if we solve it here, then we can do it everywhere. And that's the other piece that's very exciting.
PM: I want to thank all of you for being here today. We really appreciate your partnership and your commitment to this work, and those of you who are seeing patients and families every day, thank you for what you're doing to transform that experience. Thank you to this amazing panel. You make my heart proud, so thank you.
SP: Thank you.
MG: Peggy, thank you.
PM: Thank you, guys.
LC: I hope you enjoyed this discussion about the documentary “End Game.” The panel also addressed questions from the audience that we'd like to share.
The first question was for Dr. Pantillat. A person in the audience wanted to know how he stays passionate and committed to his work, especially when he's around so much heartbreak and loss.
SP: I think there are a few things. One, we have a team and we practice as a team. I think that's really important to the kind of care, self-care, and resiliency. So, you saw it a few times sitting around and sharing and talking together. Our social worker, Bridget, Dina, our Chaplain, we think a lot about that, about the risk of burnout in the work that we do. So, we really focus on it. Our Chaplain, Dina, has a whole program that she leads for us in self-care. Rotating off, honestly, is part of it as well. Not doing it every single day, which gives me a lot of respect for our nurse and our social worker and Chaplain, who do this day in and day out. They don't get to rotate out like the doctors do.
As heartbreaking as it is, it's not my mom. But when it's someone who reminds you of your mom or something else, then it's particularly difficult, and sometimes, you just have to take a moment out or ask someone else to step up. I think the most important part, really, is to be conscious of it and to really embrace it and be aware of it, and talk about it. That's the other thing Dina always says, "Connection is protection from burnout." And so, that connection with the team and with each other is really important. I run every morning. When I run, I always kiss my wife before I go. I just think, "If some bus comes by," which happens a lot in San Francisco, "that's going to be my last act."
I do think about those things, but I think in that way, it enriches life and makes it more tangible.
LC: The next questioner wondered how palliative care in the United States compares to palliative care in other countries.
SP: I think it depends on where you go in the world. I think, when you go to England and Ireland, Australia, they've integrated it into their health care systems. In Australia and the UK, it's part of the health care system. Canada as well. Australia has a whole national strategy in palliative care and its population-health focused. I would not say that they have enough palliative care clinicians, but it's at least part of the health care system. I would say many other parts of the world, they're behind us. I think there are lots of places where they are behind us, still; it really depends on where you go. Like a lot of things in health care, it's very local.
My other observation is that, around the world, palliative care is very cancer-focused. I would say one thing we've done well in the United States is really expand beyond cancer. And not a lot of folks in the film have cancer. If you look, for example, just at our palliative care quality network, which is 115 palliative care teams across the country, only about 30 percent of the patients that are seen, this is hospital-based palliative care, have cancer. So, I think the outreach of people with heart disease and lung disease and neurologists, and we have nephrologists, kidney doctors, and pediatricians really trying to expand the work.
“Once researchers read the definition [of palliative care] to [patients]…97 percent of them thought it was an important priority for the health care system.”
LC: The next question for the panel dealt with a common misunderstanding of the term 'palliative care'. Many people think it's synonymous with hospice care. Dr. Shoshana Ungerleider, one of the producers of the documentary, responded first, followed by Mark Ganz, President and CEO of Cambia.
SU: A lot of what I do, as a generalist in the hospital, is just talking about people's misconceptions about what palliative care is and what hospice is, and maybe what it isn't. So, sitting down and hashing through that with people because the latest statistics, I saw 76 percent of Americans aren't familiar with the term. Or, maybe they've heard it, but they aren't really sure, or they think that it's the same thing as hospice. Gosh, I know that I personally, and with my colleagues, talk a lot about language. It's such a tricky thing. There are institutions who are moving away from using the term 'palliative care' and talking more about 'supportive care'. The UCSF program is the Symptom Management Service, so they're focused on what we're doing, and that's talking about symptoms. We could probably sit here and talk for four hours about language.
PM: I think it's a major branding problem. The field has really, I think, confused the two terms and sometimes used them interchangeably. And we did a study with the Cambia Health Foundation a while ago, and we found the same information, that people didn't know what “palliative care” meant. But once researchers read a definition to them, and then I think it was 97 percent of them thought it was an important priority for the health care system. They wanted it, and they thought more conversations about it would help them. So, when is the last time 97 percent of people agreed on anything? To me, that says it's a market. We have the opportunity to rebrand and re-market, reposition palliative care to be about living and living well, with quality.
MG: Yeah, two funny stories to relate to that. The Cambia Foundation received an award from the American Academy of Hospice and Palliative Medicine. And in receiving that, I had the opportunity to address the some-3000 people who were there. And I brought up the thought, the notion, that maybe there was a branding problem with palliative care. At which point, half the room booed, in a good-natured sort of way. But it was the hospice providers that booed, because they view themselves as they're the pioneers of it, and they are rightfully proud of what they have created. They created it in a vacuum, and those who practice it really do make a difference. They're proud of that. The way I read the room is that I think they're a little bit bothered or concerned about this broader definition, because, I think, that almost feels like that's going to cheapen or misdirect or possibly take resources away from the good work they're doing. And so, I sensed a tension in the field itself, which is probably going to make it harder for the branding issue to be overcome.
On the other hand, I would say I've been struck and very excited about how much more in the broader media palliative care is being discussed as something other than purely end-of-life care. And that is very heartening to see, and I think that's one of the things that will make it less radioactive and more acceptable. And the second thing is if the health care system can avoid the trap it loves to fall into, which is to always relate something that is about an event of life and turn it into how we can save money. Because that's what turns this radioactive for broader Americans is they think that, "Oh, you're doing this so that you can save money on me." It's not about that, and anybody who tries to take it there, it's a distortion of the truth. I know it's tempting because in hospital systems, it can be like, "I want the return on investment," or, "I'm going to invest it." So, the bait is put out there.
To your point, the second story is my own sister, who lost her husband on Christmas Eve this year. He was a life long suffer of diabetes and he'd kind of gotten to that end stage, he was on dialysis. At one point, when he was in the hospital up in Seattle, I asked Randy Curtis (Co-Director, University of Washington Palliative Care Center of Excellence) if he would be so kind as to go and visit, just visit with my sister and my brother-in-law. After he did, after the visit, I talked to my sister and I said, "So, did you get to meet Randy?" And we talked about it. And my sister, who's a nurse, who's been through this, her comment to me was, "You know, I just don't think we're ready for it." Which then, immediately was like, she thought it was about preparing Bill to die. And she's a really sophisticated person from the health care system herself, so it just says how far we have to go in some respects in people understanding.
“If we talk about how to live well and really wanting to support people in their life, and how to live every day well, then people are going to hear the message [of what palliative care is].
SP: What I would add is, explaining the difference between palliative care and hospice is something I do a lot. And so, I talk about the care focused on helping you live well with serious illness. That's called palliative care, and there are many ways to deliver it, and hospice is one way to deliver it. And there are some rules that we've created in America around hospice that require prognosis and other things that were relevant maybe back in 1982 and are not that relevant anymore.
So, I think that's one thing, is to change that, and to explain the difference. Unfortunately, I think, a bit of a self-fulfilling prophecy around hospice. The median length of stay in hospice is 18 and a half days. If you get referred to hospice, half the people get referred, in 18 and a half days, are going to die. And 35 percent of people spend one week or less. So, there's a 1/3 chance, when someone tells you about hospice and you agree to it, you're going to be dead in a week. And so, it's not that hard to associate those two things, even though you can have a six-month prognosis and you can live longer than that.
I think there is a challenge in how hospice does not really speak to how people get care in America in the face of serious illness, even very advanced illness, they might continue taking oral chemotherapy or immunotherapy or take other treatments. I think there's some work to be done there to get concurrent care, which is really what we talk about.
Curative care, alongside palliative care, and I think there are great models of this. The state of California, Medicaid in California and MediCal, there is a law that says you have the right to have simultaneous palliative care and curative care. That's true for children, initially, and then it expanded to adults, and it has created new palliative care programs that didn't exist, community-based, home-based palliative care programs that didn't exist beforehand. I think there are a lot of opportunities there.
I think the other thing is really our responsibility in palliative care, which is to provide the care we say. If we go in there and we talk about death all the time, then people aren't going to know what we're really about. And if we go in there and we talk about how to live well and really wanting to support people in their life, and how to live every day well, then people are going to hear that message.
LC: The final question for the panel focused on the patients in the film. Most of them were relatively young. A person in the audience wanted to know if palliative care discussions are different when you're dealing with someone who is older, as opposed to a younger patient.
SP: What really strikes me is how much sadness and grief and loss there is, even when someone's 100 years old. That's what really strikes me, is that there's still sadness when people die. They will admit, "She had a good, long life and we can accept that as mitigating a little bit." But nonetheless, there's a lot of sadness when people die. Just really coming to appreciate how sad it is when that happens. It may be a little bit easier for them, there's this kind of tragic piece that's not quite there in the same way, but people are still really sad. They don't want their loved one to die. That's pretty universal.
LC: Thanks for tuning in for this episode of HealthChangers. If you'd like to watch the documentary “End Game,” it's available on Netflix. You can find more information on all of our episodes at cambiahealth.com. You can also follow us on Twitter @Cambia. Please subscribe to HealthChangers on iTunes or Stitcher and leave a review. Thanks for listening.