Palliative Care: The Importance of Informed End-Of-Life Choices with Dr. Shoshana Ungerleider

DSP 21 | Palliative Care

 

More and more unfortunate patients are spending their final weeks, days, and minutes of life hidden away from the people they love, and sometimes they are in significant amounts of pain. Dr. Shoshana Ungerleider, a physician and a palliative care activist, believes that a new day of medicine is coming where the end of life is not a medical issue to be solved, but rather something that all human beings should be reflecting on personally and talking about in their own lives. Struck by the number of older, more frail adults ending up in the ICU where the most aggressive, invasive care gets provided, Shoshana realized that her passion in life was making sure that her patients and their families’ end-of-life experience was in line with their goals and values. Today, Shoshana joins host Douglas Nelson in examining illness in the context of the whole picture of someone’s life and how physicians, nurses, and other providers of healthcare can come up with a plan of care that focuses on having them live their best day every day, no matter how many days they have left.

Listen to the podcast here:

Palliative Care: The Importance of Informed End-Of-Life Choices with Dr. Shoshana Ungerleider

We have a special guest, someone that I’ve been hoping to get on the podcast since we launched. Her name is Shoshana Ungerleider. She’s a physician, a board member, a speaker, a Founder and a palliative care activist. She is the Executive Producer of the Oscar-nominated documentary, End Game. We’re pleased to have her on this show. Shoshana, welcome.

Thank you so much for having me.

I felt tired reading that list of all the things that you’re involved in. Tell us how you got your plates so full and what keeps you going these days.

Sometimes when I hear it, I’m like, “Who are they talking about? That’s not me.” It’s somewhat by accident. I found myself spending a whole lot of my early 30s training in medicine. That takes 80 to 100 hours a week of your time. You’re hyper-focused. I liked that. By the end of three years of residency, I was burned out. I asked myself, “What am I most passionate about in life?” It was making sure that my patients and their families knew more about how to make sure that their end of life experience was in line with their goals and values.

I thought through how could we best rethink of medical education. All doctors and other clinicians know how to talk to their patients about the hard stuff. It turns out, we’re not teaching them how to do this stuff. How can we engage the consumers of healthcare, patients and families, really all of us in what the options are? How to best ask for what they want and deserve? It turned out that it was through philanthropy and a bunch of film projects. It fell in my lap and many other things. It’s been an interesting few years. Never in a million years would I have imagined I would end up on this path. It’s been incredible. I’ve learned so much so far.

You said you were thinking about where you get your energy, where your passion lies and having those end-of-life conversations with patients. Was there a particular moment, a particular conversation that sparked that for you?

There probably wasn’t one conversation, but it’s pretty early on in my residency. In my internal medicine residency, I was spending months and months in the ICU doing normal training. I was struck by the number of older, more frail adults who are being admitted to the hospital and ending up in our ICU where the most aggressive, invasive care provided. These were folks that had widely metastatic cancer or end-stage organ disease. They were ending up on what I realized is this default pathway. At least in the United States, you will receive aggressive, invasive care, no matter how old and sick you are. Even if it won’t help you unless you opt out loudly or have somebody there in your corner advocating that, “Mom, dad or brother didn’t want this. Let’s talk about what the other options are.”

Once I realized that that was the case, and many of these people were spending their final days, weeks and minutes of life hidden away from the people they love and sometimes in significant amounts of pain, it didn’t sit well with me. That’s not why I went into medicine. I wanted to make sure that more people and their families had information and that we started conversations far upstream. It’s months and even years upstream from what I would consider being an acute crisis so that we could best deliver care that’s in line with people’s goals, values and the care that they want. At least they understand what’s going on.

There’s often a big disconnect between what’s happening in a busy hospital and what patients and families are gathering as to what’s happening. We need to be closing that gap and educating physicians, nurses and other providers of healthcare about how to best talk about hard things like prognosis. What are the goals of care here? What does the future hold for somebody when they’re very ill or have a life-limiting illness? I was lucky to be trained by palliative care doctors who know how to do those things and use a team-based approach to caring for people. They do not just look at the medical but also the spiritual and the psychological and more of about what life is like. It’s how to look at illness in the context of the whole picture of someone’s life. It’s how to come up with a plan to care for them that focuses on having them live their best day every day, no matter how many days they have left.

I was struck by looking at what you’ve got and as part of the documentary as well. It’s the phrase, “We help people live as well as possible for as long as possible.” It sounds relatively straightforward on one reading. It’s also a profound change in what typically people expect to see from a physician in a hospital.

I wish all of the medicine would take that on as the ethos. We should be asking people what matters most to them in their lives and tailoring all care based on the answers to that question. Whether we’re talking about managing diabetes or high blood pressure in a younger person or talking about end-of-life decisions, it should be framed around what matters to people and what does a good day look like now, next week or next year. We should engage more people in that way around their own lives and their own care. The field of palliative care has taught me so much about having to think about life and death. At the end of the day, no matter how old you are, it’s about living as well as possible for as long as possible.

What gets in the way of physicians being able to provide that care across the spectrum of healthcare?

There’s often a disconnect between what’s happening in busy hospitals and what patients and families are gathering as to what’s happening. Click To Tweet

There are so many things. The big thing that stands out for me on the societal level is that we still have a huge cultural societal stigma around talking about death and dying. Before, people would die in their own homes. We didn’t have modern medicine or modern technology to care for people in hospitals. That idea didn’t even exist. Most people died on their dining room table, surrounded by family and others. Death was something that was expected and planned for. It was part of day-to-day life. That transitioned to death being hidden away in hospitals and other institutions. A lot of good things came along with that. We can save lives now. We’ve extended life expectancy.

What that’s done for having a day-to-day awareness of our own mortality, things have shifted. That’s number one. Number two is, because of that, doctors see death as a failure. We do everything we can to avoid failure in medicine. We’re not taught how to have a role in healing when cure is no longer possible. For many physicians, it’s seen as not my job. If I can’t cure this person of this illness, why would I be involved? That’s the wrong way to see it. We’re always caring for our patients, whether a cure is intense or not. At least I can speak to the US healthcare system. There are some parallels in Canada and the UK, although not directly.

We have a lot of perverse incentives in medicine. We’re paid do things to people, like surgeries, procedures. That is how the health insurance system is set up. On the flip side, we’re not reimbursed or paid to sit and talk with people. I’ve seen three-hour conversations from a palliative care provider with patients and families. It changes someone’s life dramatically, just as much as an open-heart surgery would in some respects. It’s not valued in our medical culture and therefore not taught. I love to make the comparison that most surgeons spend somewhere between six, seven, nine, ten or sometimes years training in the operating room to learn technical skills.

It’s so technical, whereas we know that 70% of doctors have not been trained in how to have difficult conversations with patients. That’s such an essential skill of any kind of doctor, not just the palliative care doctor. We’ve missed the mark in terms of medical education. That’s slowly changing. A lot of the work that we’re doing at Sutter and End Well is changing that a bit. It’d be nice to see at the highest level of graduate medical education that’d be a top priority. We have 10,000 Baby Boomers turning 65 every day in America. This issue was only going to get bigger. The time was yesterday to start thinking about this.

You’ve described some of your personal journey in training as a physician. You’ve also, through your own philanthropy, done a lot to encourage that education of postgraduate medicine. Through your work with End Well, which is a movement to change the way both the healthcare system and how individuals think about the end of life, you’re encouraging this conversation to think about it in a different way. How have you found people respond to that, both within the hospital and outside?

It’s been quite positive, surprisingly. Building something new, at least creating a media platform and a convening that was so interdisciplinary beyond the typical healthcare system, I thought people would be less receptive to it. It’s been positive. People like getting to work with entrepreneurs, venture capital, policy folks, patients and caregivers, people who are often forgotten in this conversation. It’s also designers, the media and educators. This is truly a human issue. The end of life is not a medical issue to be solved, but rather something that all human beings should be thinking about, reflecting on personally and talking about in their own lives. It’s been wonderful to see their response. We’ve grown exponentially, month over month, and we’re excited about the future.

DSP 21 | Palliative Care
Palliative Care: End-of-life decisions should be framed around what matters to people and what a good day looks like today, next week, or next year.

 

You said you’ve been warmly received or people have been very open to that. Has it been the same with your physician colleagues who are open to that idea that the end of life is something to be understood but not solved?

I think so. Maybe it’s because I live in an innovation bubble in San Francisco, but for the most part. Especially, it’s younger physicians who have come up in an era of having a little more understanding of the importance of palliative care and of talking early and often with our patients about what matters most to them. It means an advanced care planning conversation about healthcare preferences. There’s a new day of medicine coming, with people who are both clinically trained as well as more culturally savvy in terms of why this is an important conversation to be having. It’s been surprising to me as well. Many people are excited by this and energized by the fact this is not just the healthcare problems would be solved, but rather, there are more people invested in this conversation to come up with the right solution going forward.

How about patients or families of people that are encountering these end-of-life conversations in their own life? Have you had much feedback from them, either in terms of the documentary or the work you’re doing with End Well?

Most people agree that this is a very hard subject. Anybody who says it’s not is crazy. No matter if you’re talking about this stuff all day long and every day or not, it is tough stuff. There are a lot of existential questions that come up when we deal with the subject matter. The goal with the documentary film End Game and the one before it, Extremis, was to shine a light in some of these dark places. We feel like opening up this conversation or at least opening the door, even a crack, to this conversation is important. This is a topic that is largely hidden away. Most families aren’t going to sit around the dinner table and talk about it every night, and they should. This is something that, maybe once a year, people can talk about with the people that they love.

At the end of the day, we don’t know what tomorrow will bring. The more that we can be prepared in a mind space so that everybody can get the care that they want at the end of their lives is critical. Overall, the response has been wonderful. When we went to the Oscars with the film, we were stopped on the street. People recognized BJ Miller and said, “I saw your short documentary. It was so impactful for me.” That’s the feedback that we don’t always get unless you’re out in the world showing the film and talking about it. It’s been wonderful and energizing to get that feedback from people.

One of the big tenets of the work you are doing is using design thinking and design theory to change the conversation and the way healthcare is working. How have you used that design thinking? It’s a new way of thinking. Is it opening up people’s willingness to consider changing the system? Is this a new way to do things?

We have a huge cultural societal stigma around talking about death and dying. Click To Tweet

I got exposed to design thinking later on in my educational journey. It was after my medical training with you. I got to do a project with the design firm that’s worldwide but based in San Francisco. In the simplest straightforward way, it makes sense to me, at least, that when you are creating a new product, a new service or a new system, it’s keeping the end user at the center of that conversation. Whether you’re designing something for a patient, a caregiver or a clinician, you make sure that those people are at the table when coming up with those ideas and testing them. That to me is common sense. That, in a boiled down way, is one of the main tenets of design thinking. We said, “What if we are to create an entire symposium that keeps that framework at its core?” It’s why we went to designers, entrepreneurs, funders, patients, caregivers, lawyers and healthcare providers to say, “Let’s all come together, listen to some experts and see how we can collaborate and build new things together.” It’s been exciting to see what has come up in that event and thinking differently about problem-solving.

Anyone who’s reading this can probably tell what I’ve known for a number of years, which is you’re a difficult person to say no to. Your enthusiasm and drive inspire people to want to be a part of the movement that you have and, in many ways, singlehandedly launched. When you’ve encountered barriers and people that want to close the door, that don’t want this movement to move forward, how have you either worked through them or around them?

I rarely encounter people who are not interested in this. Maybe if I select for them in my life. Everybody has a story. What we’ve learned with showing this film across the country in hundreds and hundreds of venues, from the followers of End Well on social media, through our website and at our symposium is everybody is impacted by serious illness, death and dying, grief and loss and the issues around caregiving. This is part of what it means to be a human being. As challenging and heart-wrenching as it can be sometimes, this is truly, at a core, the great equalizer. When we can appeal to that side of the people or that part of people’s lives, they get it. Whether you’ve encountered it in your own family or tangentially through a close friend or extended family, it’s there. If we’re not already patients in a healthcare system, we will be at some point. This is something that is quite universal. Those issues come up in conversations. I rarely meet anybody who says, “This is not important. Why are you doing this?” Everybody gets it.

They may be trying to avoid you because they want to avoid the conversation in general. You mentioned a couple of times that End Well has grown quite a bit over the past years. Where have you found the energy, the new ideas, to keep this movement growing as quickly as it has been?

What we learned with year one when this was an experiment of bringing a diverse group of people together, both on stage and in the audience, was that we sold out three months in advance. We were shocked that there was so much interest. We said, “How can we expand this network even further and invite an even more diverse group of people to this conversation?” There isn’t anybody. When people ask me, “Who’s your audience?” My response often is, “Who isn’t the audience?” given the universal nature of the subject matter. We’ve continued to think broadly in terms of, “How can we use people’s personal narratives, their personal and professional experience, to shed light on various elements of this conversation?”

We’ve had folks like Kai-Fu Lee, one of the Founders of artificial intelligence to maybe Microsoft and Google China. He talked about his experience of being somebody who relied heavily on technology to solve problems. He realized, when he himself became seriously ill, that there was no robot or artificial intelligence code that could replace a human being and how important that is to keep involved in the conversation. We’ve had folks like the Cofounder of the Black Lives Matter Movement, Alicia Garza. Her own mother spent a lot of time in hospice before she died.

DSP 21 | Palliative Care
Palliative Care: If we’re not already patients in a healthcare system, we will be at some point.

 

Speaking about how somebody has built a movement over time, how important that is that it’s not just a hashtag. People are out there doing and experiencing to create change. We’re continuing to think broadly about what is possible in terms of this conversation. People are excited about that. We’re always looking for the unexpected, the new and different topic, as well as highlighting people that have been working in this space for decades and have moved the needle forward in terms of the policy, the healthcare systems’ design and the patient advocacy work. It takes all of us.

I love that idea of thinking as broadly as possible, bringing along as many people as possible. It’s one of the things we see with our work here at The Discovery Group with clients. The clients that are operating at that exceptional level of organizational performance have a lot of traits in common. First and foremost is a broad openness to new ideas and taking the big picture view of whatever their mission is. That big picture view allows them to respond to challenges and take advantages of new opportunities. It sounds like that’s exactly what you’re doing with End Well.

That’s what we’re trying to do at least. We’re a lean team. We operate like a startup. At this point, we’re a nonprofit. This field and this conversation are changing so rapidly in the United States and beyond that, we have to be open to new ideas and new concepts to thinking, “How can we most effectively change the world?” As somebody who’s trained in medicine, it’s been an exciting ride so far. I’m learning new things every day.

As you’re learning these new things, who do you talk to when you have a question that you’re struggling with? As the leader of this movement and the leader of End Well, who do you look to for advice?

We have a fantastic advisory board, which is a mixture of hospice and palliative care contents folks on the healthcare side, the policy side, the design side and the media front. A lot of how we’re thinking about is not only for curating and producing wonderful events every December in San Francisco, it’s also how do we disseminate that information. It’s leveraging traditional media, social media and technology platforms to make sure that all of these incredible talks get out there to the world. That’s our goal, is to foster a new conversation to affect culture change through opening up people’s minds to this conversation, even people who don’t even work in the space of healthcare and beyond.

This is part of what it means to be a human being, is to recognize our own mortality, that life will end one day, and how can we live our best day every day. Our first month of End Well is to build a website and use social media. There are many people that have helped us out along the way and that I go to for advice. Sometimes it’s my friend’s kids who are teenagers who are like, “You’ve got to use Instagram,” or, “Have you thought about using Snapchat to push out your content?” It’s every single day, learning new things and thinking differently about how to solve problems. It keeps me on my toes.

Part of what it means to be a human being is to recognize our own mortality. Click To Tweet

With that energy and the momentum behind you, you mentioned that you’re built like a startup in End Well. Do you see it as tension about wanting to stay lean and mean? The other side of that tension is becoming more of an institution or a more formal organization that may, in some ways, be more sustainable over time. How do you balance those two off of one another?

We’re at this point, reaching from growing pains around that discussion. It’s something that’s important to think about as we continue to grow and want to scale up. “Am I the right person to be running this organization?” Sometimes that’s a hard conversation even to reflect on, given that this is my baby. Our partners have grown it from something teeny tiny to something that’s more internationally known as an entity. That is attention and something that every organization should be thinking a lot about. It’s also sustainability for the future, given that we’re largely philanthropy-funded. Those things can fluctuate over time, the availability of philanthropic dollars and beyond. We are at an interesting point in our growth around that conversation. It’s important for people to be thinking about as they grow from the early stage to a larger, more established entity.

We see a lot of organizations struggling with that transition, organizations that haven’t had the same initial success that you’ve had. Those are important and difficult conversations to have about what the future of the organization might be. I want to go back to one thing that you touched on about leveraging philanthropy, being primarily funded by donor dollars. You said leveraging philanthropy to spark innovation and to change the story. Particularly people who are giving significant gifts to any organization, they want to spark innovation and change. How do you view that, both as a donor and now as a recipient as leader of End Well? 

It’s not a very hard sell in terms of doing something highly innovative. That has taken off over the last couple of years. I have had that experience that there are many small family foundations up to much larger philanthropic organizations that see the culture change as something that’s hard to wrap your brain around and to measure. You can’t argue with the facts. Our viewership on, for example, Facebook reached eleven million people with our video that went viral. Things like that in terms of the surrogate numbers that you can use to measure uptake and culture change. It can be powerful. Similarly, with the film projects, Netflix bought End Game. We have no idea how many people have seen it, where they live and how old they are.

We have no data. We’re nominated for an Academy Award, so that’s an interesting surrogate marker of impact. A lot of people, when we think about sparking innovation, want to make sure that those dollars are going to a worthwhile place and if there’s a way to measure success over time. That’s important but also hard, especially when you’re looking at something as nebulous as culture change. As a philanthropist, I’m always thinking about, “What problem are we trying to solve here? Does X amount of money get us to the next level in terms of moving the needle?” Sometimes it can be hard things to measure.

Changing the way our culture thinks about the end of life is difficult to put into a few ROI statistics at the bottom of the page. It is critical that we’re having this conversation. We’re doing it, to some large extent, through your efforts in End Well to have these conversations and to encourage these conversations around dining room tables and not just in the waiting room of intensive care units. Thank you very much for all that you’ve been doing.

DSP 21 | Palliative Care
Palliative Care: Many small family foundations and much larger philanthropic organizations see culture change as something that’s hard to wrap your brain around and measure.

 

Thank you. It’s the more that everybody is talking about this issue. This is on all of us, to be a part of this movement. I’m thrilled to be able to talk about it with you.

You’ve mentioned that the documentary is available on Netflix. For people who are reading that want to learn more about End Well, where should they look for more information?

Our website is www.EndWellProject.org. We’re on just about every social media channel like Twitter, Facebook, LinkedIn and Instagram. We’re everywhere. Our annual symposium is December 5th, based in San Francisco.

Shoshana, thank you so much for being a part of The Discovery Pod and for all the work that you do.

Thank you for having me.

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About Dr. Shoshana Ungerleider

DSP 21 | Palliative CareDr. Shoshana Ungerleider is a physician, philanthropist, and speaker. She works as an internist practicing hospital medicine at California Pacific Medical Center in San Francisco. She received her medical degree from Oregon Health & Science University in Portland, OR and completed a residency at California Pacific Medical Center where she is now on the teaching faculty and serves on the Executive Board of the Foundation Board of Trustees. She is an LP in Trucks Venture Capital Fund.

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