Changemakers: End Well Founder Shoshana Ungerleider, M.D.

Shoshana Ungerleider, M.D., is an internist at California Pacific Medical Center in San Francisco and executive producer of the Academy Award-nominated end-of-life documentaries Extremis and End Game.

Ungerleider founded End Well, an organization with the mission of creating a cultural shift to normalize discussions about the end of life with the goal of improving quality of life for patients and families in their final days. She has made it her mission to help educate clinicians and the public about the intricacies of end-of-life decision making across all walks of life.

Ungerleider recently spoke with Hospice News about what needs to change about the health care system’s approaches to end-of-life care, and how her work is helping to advance that change.

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You’ve done a great deal of work to advance the cause of end-of-life care, but you are not hospice or palliative care physician. What drew you to the end-of-life space?

I work as a general internist. I’ve done hospital medicine, and now I’m mostly doing primary care work. It was actually early on in my residency in the intensive care unit that I was really struck by the number of older, more frail adults who were ending up in the intensive care unit.

They were quite ill; they had many underlying, often chronic, medical problems. They were dealing with and then end-stage organ disease or widely metastatic cancer, and they were being intubated, hooked up to ventilators and essentially given life support, despite the fact that for a lot of them it didn’t appear to me that anything we were doing was gonna really help them. That’s not to say that none of them were helped by what we did, but it didn’t make sense that that was the default thing that we did for everybody.

I also realized that many of these folks and their loved ones didn’t have a sense of what was happening. We weren’t communicating with them about the overall prognosis, the illness trajectory, what tomorrow might look like, or what next week or next month, if there was a next month, might look like for them. I realized that they didn’t really have a say in what was going on. And in talking with a lot of them, I found out that many of them probably wouldn’t have chosen this this path for themselves if they would have known a little bit more about what was happening or had an earlier conversation with their doctor or loved ones about what trade-offs they’d be willing to make in the setting of a serious illness and what their quality of life would look like.

What opened your eyes to the importance of these conversations?

I was just really blown away by that fact that by default everybody gets aggressive invasive treatment, no matter how old they are, no matter how sick they are, and even if sometimes it may not help them. I was lucky in that in the institution where I trained, California Pacific Medical in San Francisco, I had wonderful mentorship by palliative care physicians who would come in and talk with families about what matters most to them. I realized that in health care at large those kinds of conversations aren’t happening, because we’re not training doctors and incentivizing those conversations early and often.

I think that we should be treating communication skills like any other procedure that we do in medicine. We should be giving it the time and energy and incentivizing these conversations just like we do with learning our procedures or doing a surgical intervention, because they’re just as important.

Can you tell me how End Well came about?

I started thinking about how we can train all doctors in how to have effective conversations with their patients and family members, and then how on the consumer side we can arm the patients and caregivers with the right information at the right time so that they can advocate for themselves in moments when it really matters.

I started going to lots of conferences around the country that were geared toward work in hospice and public policy, and I would run into the same people at these events, and a lot of the same subjects were covered and people talked about how for 20 to 30 years they’ve been trying to move the needle and shift both institutional culture and public perception about end-of-life care.

I realized that we were seeing the end of life as a medical issue, largely to be solved or just a policy issue to be solved. I think this is a very human issue, and we need more people involved to open up the dialogue and lower the barriers to entry to this conversation. I realized that when you bring together an interdisciplinary group of people and allow for different answers and ideas, it can be powerful and impactful. And so I said, what if we put on a conference or a gathering where we really made a concerted effort to talk about this from a human perspective, using the framework of design thinking.

Can you say more about what you mean by design thinking?

We invited diverse stakeholders to the table to talk about who the end user is, and make sure that the end user is part of the conversation. When we’re talking about developing a new product for patients or clinicians or for health systems, you have to engage those people. In 2017, we hosted the first End Well Symposium, and we invited designers and tech folks and venture capitalists and artists and educators and patients and caregivers and of course, nurses and doctors and social workers and chaplains and pubic policy folks.

We weren’t sure if anyone would show up. It was sort of this experiment, and we sold out, three months in advance. And we had hundreds of people on the waiting list to come.. It really turned this into a movement to transform the end of life into a human centered experience.

You’re well known for producing two Academy Award nominated Netflix documentaries, Extremis and End Game. Can you speak to what you saw as your mission in bringing those films to the public?

I was part of a wonderful, large team of people who did both those films. We were lucky in that the films themselves were wonderful, and the directors did a fantastic job. With Extremis, Netflix had never bought a short documentary before, and this was the one they decided to get behind, which of course was extremely helpful in terms of getting eyes on the film.

Similarly with End Game a few years later, this was a totally different team of directors and producers, but with Netflix behind it we carried it really far. I often felt as if that if people had a chance to actually see what happens in an ICU and what it looks like to be critically ill and get very aggressive, invasive treatment, they would be better equipped to make decisions for themselves and for their loved ones. It shed a light into this very kind of dark, opaque place where unless you’re a health care professional, unless you’ve been in the intensive care unit as a patient yourself, or or been there with a loved one, you really don’t have a sense of what goes on.

The health care system does a lot of inhumane things to people and a lot of suffering and pain happens there. On the flip side, of course, we save a lot of lives, and advanced medical science and technology is a good thing. But we don’t often stop and ask if everybody would benefit from the intensive care unit. I felt like this film did a really great job of showing just how difficult it is for families, for patients and providers to deal with a lot of this stuff.

I think film is a very powerful way to tell stories and to reach people who otherwise maybe wouldn’t have encountered this subject. It’s a great platform for people to be engaging with this content, because this is obviously an issue that touches everybody throughout life.

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