Living and Dying Well Through the End of Life

Thoughts on Design, Mindfulness, and Healing the Medical System in Community

By Jenara Nerenberg

Last month, I attended the second annual End Well Symposium in San Francisco–a multidisciplinary event focused on reframing end-of-life care and conversations through the lens of design, health care, language, spirit, community activism, and policy. I caught up with founder Shoshana Ungerleider just before the conference to explore these themes and the long-term outlook of how to live well through the end of life. Speakers ranged from nurses to architects to entrepreneurs and doctors, neuroscientists, philosophers, and political organizers.

Given my own work reframing interdisciplinary mental health conversations, I spotted the resonance and overlap of the importance of our words and how they shape our viewpoints and emotions about periods of our lives. And the importance of cross-disciplinary work cannot be overstated across mental health and end-of-life, because both of these cut across professional fields and the minds and inner lives we all inhabit. I was thrilled to ask Shoshana more about her vision and what lies ahead.  

Jenara Nerenberg: First, Shoshana, tell me a little more about your background and how you started the symposium.

Shoshana Ungerleider: I’m a physician by training, an internist. So I practice internal medicine in a hospital setting, meaning–clinically–I only take care of patients when they have to stay overnight in the hospital. And it was really early on in my medical training that I was struck by the number of older, more frail adults who had widely metastatic cancer, or end-stage organ failure and they were being admitted to the ICU, despite the fact that nothing we were going do was gonna turn back the clock on their age or cure their underlying, incurable disease.

I realized that they were suffering in their last days, weeks, moments of life–really hidden away from the people they loved and familiar surroundings, hooked up to all sorts of tubes and machines. I think that the thing that was the most distressing to me was that many of these folks and their families didn’t have a say in this trajectory, meaning that by default in this country you’ll get this aggressive, invasive care that we offer in the ICU, no matter how old you are, no matter how sick you are, and even if it won’t help you much of the time.

And so, in sitting and talking with many of these patients and their families, I quickly realized that, gosh, they don’t have a sense of what their prognosis is, what’s happening day-to-day in the ICU, what the future really holds for them. For many of them, what was happening was not in line with their goals and their values of how they ended their lives. And, in fact, they were often dying in these situations, and, again, really suffering.

So, when I finished my residency training, I got very interested in how we can engage patients and their families in a deeper, more human conversation about what matters most? And, how can we, on the flip side of that, make sure that all healthcare providers are trained in how to have these difficult conversations with patients? It turns out that 70% of doctors surveyed had not been really given any training in how to talk to patients about any of these difficult topics about goals of care and breaking bad news and such.

So, it’s not surprising to me, among many other factors, that we’re in this situation. I spent a lot of time going to conferences around the country, trying to learn more about where we’re at in terms of on the healthcare side, around hospital or palliative care and the policy. I would meet many of the same folks at these convenings around the country and we would all talk about how the system is very broken and that we need to make change. And it’s not only the healthcare system, but it’s a culture shift in terms of our sort of societal awareness of this conversation of mortality.

But it was always the same people coming to these events, and they were fantastic and they have been doing amazing work in the field for 20, 30, 40 years, and really have been pushing the ball up a very steep hill. But I actually think that ending well is not a medical problem. It’s not a policy issue. It’s a human issue. So, the more that we can engage diverse voices and professions in a conversation about what living well means, how to create human-centered solutions to make the end-of-life experience better, that’s where I think real change will happen.

I founded End Well to invite anyone who’s interested to join in this conversation, to try to lower the barriers to entry, to say: “Hey, tech folks; hey, design folks; people from patient advocacy and the media, and arts, and education; and, of course, policy and healthcare, let’s all come together as a community to talk about this at a very human level.” And again, we’re really focused on solutions to transform the end of life into a truly human-centered experience in the many ways that that can unfold for people. So, that’s my very long “short” answer.

Jenara Nerenberg: And what do you hope the symposium itself will accomplish? Or how is the symposium going to help bring us closer to that goal?

Shoshana Ungerleider: We are a non-profit convening and also a media platform. All of the content that we create around the symposium—it’s a TED-style event, meaning we have about 20 very short, highly curated presentations on a single stage— we spend months and months working with our speakers from diverse backgrounds to come up with the right sort of messaging and the right talk, and then we package that content throughout the year and share it out. So, not only at the symposium itself, but, of course, we’re livestreaming it, and then also building a lot of content—whether it’s video, audio, blog—around that messaging.

So we really see ourselves, hopefully, as part of this social movement to create a new conversation about mortality, so that more people are thinking about it or talking about it, and they’re planning for it. My hope, my endgame, is that we don’t have to do this work anymore. I’d love to be able to shut down the foundation because we’ve gotten to a place in our healthcare system and societally such that this is a normalized conversation. I don’t know that that’ll happen in my lifetime, but that’s sort of our goal.

We’re sort of a place where people can come together as a community, whether it’s via all of our social media channels or in person at the symposium and our other pop-up events throughout the year; where people can really connect with one another, whether they’re patients or caregivers looking for support, or they’re a product designer looking for a company to join, or they’re a funder looking for the next greatest thing, or they’re a philanthropist who cares about giving back in this space and wanting to kind of learn what was out there. That’s where we’re focusing at this point.

Jenara Nerenberg: And in this larger conversation around end-of-life care, which is clearly very interdisciplinary, what kinds of conversations are people having around mindfulness when it comes to this area?

Shoshana Ungerleider: That’s a great question. I think healthcare professionals can fall into kind of a routine, where we’re not treating people and their families as human beings, and sort of engaging in our work in a mindless way, because it’s easier to do that than kind of internalize what’s happening in front of us. So, I think that we need to be talking much more about mindfulness, being present to what is happening with these folks.

The rates of burnout among physicians, among nurses and other healthcare providers, is just astronomically high. We have so many people quitting the field of medicine. We have high rates of depression and suicide and substance abuse, and I think it’s because we’re not creating systematic protocols and invitations for a lot of these professionals to kind of focus on wellness and well-being in our personal lives. I think mindfulness can be a wonderful way of doing that.

I think being present to what is happening if you are someone with a life-limiting illness—meaning that you’re either the patient or a caregiver—is very important for many reasons.

For me, my personal meditation practice is really important to me. And I think that, for myself, living with an awareness that one day life will end allows me to live a better life.

Jenara Nerenberg: That was going to be my next question — can you say more about your personal practice of meditation?

Shoshana Ungerleider: Right now, I’m really into transcendental meditation, which is not the same thing as mindfulness meditation, but I do that twice a day. I’ve also done mindfulness-based stress reduction courses in the past, during my medical training, which I found hugely helpful.

Jenara Nerenberg: Tell me more about the future of the symposium itself—I love the way you’re incorporating design, for example, because I think people don’t make that connection. I’ve seen that in my work as well, thinking about the relationship between design and mental health. My own background is actually in public health, and people usually—when we talk about design—it’s usually in the context of something like obesity and diabetes, the physical environment, and walkable neighborhoods.

Can you flesh out how you see the link between design and end-of-life care?

Shoshana Ungerleider: I’m somebody that’s fairly new to the world of “design.” I spent some time working with IDEO a couple of years ago, doing a design challenge. That was my first kind of entire into this world of design thinking. It sort of made so much sense to me to ask yourself—when we think about solving problems, we think about who our end user is. If we’re trying to design a new system or a product or a service, keeping that end user—whether, in our case, it’s our patients or the family or caregiver—at the center of that process, I think, is really key.

One of the things that I found in my exploration before End Well was conceived was that doctors talk to other doctors much of the time, that hospice administrators talk to other hospice administrators. The policy people talk to the policy people. No one is talking to patients. No one is engaging caregivers in a meaningful way, in terms of coming up with solutions, and I think that’s a huge missed opportunity.

We were a little hesitant to use the word “design” in sort of our tagline in the work that we do, because we don’t want it to sound academic or cerebral. It’s much more about a common-sense way of problem solving. That is, as I said, keeping the end user at the center of the conversation. So, for us, it’s very important that, if we talk about solving for patient-focused issues, we have patients in the audience and patients on stage.

We created an eCaregiver Fellowship program, where we bring in folks from across the country who are in this day to day as patients or as caregivers, to really work alongside us—some of whom were on stage this year—and really allow the audience, whether it’s in person or virtually, to kind of connect on “What are the issues that these people are facing?” in a real way. So that’s sort of the design thinking background.

Courtesy of End Well

Jenara Nerenberg: What would you like the public to know about the movement or some concrete ways that people can get involved?

Shoshana Ungerleider: That’s a great question. We think that everybody should experience the end of life in a way that matches their values and their goals. Currently, that’s not happening. End Well is really hoping to serve as a resource for a group of people who want to come together and listen and learn from each other. Really, our goal is to create more of a cultural shift that supports diverse collaborations, new systems, new products, and new networks of support to make sure that everybody has an experience that is one that is in line with who they are as human beings.

I would encourage people to check out the website and see if any of our videos resonate. Check us out on social. We’ve created a Facebook group so that people can connect—not necessarily in person, but more in a virtual sense. We’ll be doing more events throughout the year in different parts of the country, so if people want to join us in person, there are definitely ways to do that.

Jenara Nerenberg: Great, wonderful, and I just have one more final question, because I think our audience will be interested. Given your interdisciplinary focus, any thoughts about spirituality and how it might be being discussed a little bit differently in this context of end-of-life, with varying notions of God, religion, afterlife? If we think about perhaps the experience in the room as someone is passing, and what a spiritual experience or environment or feeling might be like in that room as families process the transition and grieve, can you speak to that a little?

Shoshana Ungerleider: From my own personal experience, and I think the literature supports it, people facing serious illness or the end of life often look to their religion of origin or to a spiritual practice, or whatever works for them, to sort of connect or even reconnect with in that time. And I think that’s, for a lot of people, really important to be able to kind of support that either through a family structure or through a chaplaincy.

One thing I can tell you is that the field of palliative care—of which I’m obviously a huge fan—is really a wonderful way to support people and their families facing a serious illness. We focus on everything from sort of the healthcare and medical needs to kind of the spiritual needs for people, as well as psychosocial and existential issues. Unfortunately, a lot of suffering does take place in those periods of time, and I think that the more we can support people in whatever way—whether it’s through a religion, whether it’s through a spiritual practice, or none of the above—I definitely think it is our job as a healthcare system to be able to walk alongside people in this journey in whatever way makes sense for them.

I think for many people facing a life-limiting illness, trying to connect or reconnect with a sense of meaning or purpose in life can be really important.

Jenara Nerenberg is the founder of The #Reframe Conference and The Neurodiversity Project. An alum of Harvard, Berkeley, Local Food Lab, CNN, and Fast Company, she can now be found at the UC Berkeley Greater Good Science Center and Garrison Institute and at live events in San Francisco and Asia. Follow her on Twitter and Facebook or reach her directly here.

Photo courtesy of StockSnap on Pixabay.

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