Dr. Sara Johnson: You are a general internal medicine physician by training. How did you become an advocate for making end of life care a more human-centered experience?
Dr. Shoshana Ungerleidger: I feel strongly that dying is not a medical issue to be solved, but part of the human experience. Early on in my medical training, I was distressed by the number of chronically ill, frail, older adults who were spending their final moments of life hooked up to tubes and machines in the intensive care unit, cared for by complete strangers. Many of them were in pain and truly suffering. I realized that most of them did not have a say in their care because by default in this country, everyone is treated aggressively and invasively unless you opt out loudly or have someone advocating on your behalf to indicate otherwise. We aren’t trained as physicians to have open, honest conversations about prognosis and goals of care. And, we don’t utilize palliative care resources early and often for our most vulnerable patients. I realize that we not only have a stigma about seeing death as failure in medicine, but also in society. So I started End Well, a non-profit to invite diverse voices and people from different professional backgrounds to talk about solutions to make these experiences less hard. End Well was born in 2017 as a conference that explicitly invited people from technology, design, policy, media, healthcare, law and the faith communities together. From that first convening, we knew that this was an important community to continue to build and push the movement forward to make ending well a measure of living well.
Sara Johnson: What is the origin story of the End Well Foundation?
Dr. Shoshana Ungerleidger: We started as a conference and honestly weren’t sure if anyone would show up. No one had ever brought together all of these different professions to one place to talk about ending well. To our surprise, the conference sold out three months in advance, so we knew we were onto something. The following year we nearly doubled in size and sold out again and started putting our content online through short form videos. Quickly we started getting millions and millions of views organically. From there, we have continued to grow, convening communities both in person and online to provide valuable information, storytelling and inspiration to push the movement to make end of life a part of life forward.
Sara Johnson: What are the main goals of your work there now? What are your key strategic initiatives as an organization?
Dr. Shoshana Ungerleidger: End Well is a nonprofit working to transform how we as individuals and a society experience the end of life and to normalize conversations about death, dying, grief, loss and caregiving. We offer curated talks and guides on our website and through social media, and through partnerships with healthcare and Hollywood influencers.
End Well is unique in that we aim to advance a comprehensive approach to the end of life—a process of the body, mind, spirit, and community, involving science and art, sorrow and joy, and all that lies between. We come to this knowing that few of us want to talk about dying and that most people are unprepared, practically and emotionally, when they are forced to deal with these difficult parts of life.
We look for fresh perspectives and surprising ways to significantly shift the culture around the end of life and to normalize conversations about death, dying, grief and caregiving. A key initiative for 2022 is our project with Hollywood, Health & Society (HH&S), a program of the University of Southern California Annenberg Norman Lear Center that provides the entertainment industry with accurate and up-to-date information for storylines on health, safety and security. Our project explores barriers and opportunities to present stories about serious illness and dying through film and television and to find ways to bring accurate and compelling information about all things end of life to content creators. Through this, we hope to engage audiences to better understand the complexities of these topics – the pitfalls of disease, relationships and healthcare dysfunction that underlie suffering on one hand, as well as the richness of relationships, reconciliations, love and completion that can occur during illness and caregiving.
We launched a podcast in October, 2022 that will feature some of our most popular talks as well as additional commentary from me and End Well’s Executive Director, Tracy Wheeler, who has worked with every speaker since our first convening. There’s a whole audience of super busy people out there who we hope to reach through this audio-only offering.
Sara Johnson: How has the COVID-19 pandemic influenced people’s thinking on advance care planning and death and dying?
Dr. Shoshana Ungerleidger: The pandemic highlighted the struggles we as a culture have with wrapping our heads around death and dying as well as the inequities that exist at the end of life in terms of access and quality of care. Logically, one might have thought that the response to the huge surge in deaths would have been to try and make dying and the experience of survivors better. However, the politicization of COVID, the increasing public distrust towards experts and scientists, and the strains on healthcare workers have in some ways made things worse. The ray of hope is that younger generations are proving to actually be more likely to engage with their own end-of-life planning and be far more open to these conversations than baby boomers are. I hope this will translate sooner rather than later into more openness around these topics, advocacy for improvements around everything from costs to care, and a more comprehensive and compassionate approach from healthcare in response to these shifting norms and expectations.
Sara Johnson: I was engaged in a project a few years ago in which one of the main takeaways was the limited understanding of what palliative care is (e.g., how it differs from hospice care) and how important it can be. How can we more effectively disseminate the message about how critical is to increase referrals to and people’s readiness to access palliative care?
Dr. Shoshana Ungerleidger: End Well is bringing information about palliative care and hospice (along with all things related to end of life) to people through our YouTube and social media channels, our website and our convenings. On a larger scale, medical schools could do a much better job training all doctors about end of life and providing them with the basics of palliative care so they can ensure their patients receive care in line with their goals and values.
We also know that people receive a lot of their healthcare information through television so we’re working with television content creators to bring more accurate and nuanced information to their shows.
We’re also seeing a huge benefit in terms of both knowledge and delivery of palliative care services from faith-based organizations that are already deeply trusted and embedded in their communities.
Sara Johnson: In re-thinking end-of-life care, some have advocated for and investigated the impact of psychedelic medications, such as psilocybin. Is that an important component of end-of-life care?
Dr. Shoshana Ungerleidger: Research into the use of psychedelic-assisted therapy is showing very promising benefits as a palliative care tool for patients with advanced illness who suffer from anxiety and/or depression. For those with anxiety in the face of a new illness diagnosis, treatment with psychedelic medicine has provided relief from anxiety, allowing patients the capacity to engage with their medical care with more presence and purpose.
End-of-life care is often very stressful for family members and caregivers, especially for those caring for patients with anxiety. If the use of psilocybin, for instance, can improve the patient’s symptoms, the caregiving experience will be more easily managed, lead to less caregiver exhaustion and the need for placement in a facility.
The use of psilocybin may eliminate the need for “palliative sedation” as a treatment for some terminally-patients who experience refractory symptoms.
Sara Johnson: You leverage multiple forms of media in your work, including producing documentary films. How have the documentaries such as End Game, Extremis, and Robin’s Wish shifted the national dialogue on infusing more humanity into end-of-life care?
Dr. Shoshana Ungerleidger: Every few years a documentary or movie comes along that breaks through our cultural resistance to watching stories about mortality and end of life. I was so fortunate that two of the films I’ve been involved with, Extremis and End Game, were both Academy-award nominees. I was thrilled to recently learn that End Game has become an important educational film for television content creators as they seek to immerse themselves in the experience of end of life.
That said, the cultural resistance is strong and we need to keep powerful stories like these out there. Our project with Hollywood, Health & Society will highlight all that happens along the life trajectory from diagnosis through to death as well as the experience of loved ones. Certainly, much of this experience is difficult but it is also tender, beautiful, surprising and, sometimes, just plain odd. Those very specific stories are the ones that tend to stick with people and affect them deeply.
Sara Johnson: How do you use storytelling as a vehicle to convey your message? We’re storytellers —from medical professionals, caregivers, and those living with illness—who share the richness of the last phase of life, and can help any of us consider our values, get clear information about prognosis, and understand available choices for ourselves and our loved ones. At the same time, we work to influence the ways illness, dying, and death are portrayed in popular media, so more people and experiences are represented accurately, and a richer range of possibilities exists for everyone’s end of life.
Sara Johnson: The endwellproject.org website offers resources for patients, caregivers, and healthcare providers. Which resources are most widely utilized, and where are there unmet needs?
Dr. Shoshana Ungerleidger: Hands down, our videos are most widely utilized. We’ve had several of our long-form talks reach anywhere from 15,000 - 75,000 people. On social media, some of our shorter videos have reached as many as 500,000 people. Every day, we get inquiries about death doulas, pediatric palliative care, psychedelic-assisted therapies and advance care planning just to name a few. I wish we had more resources on the site to better serve people who learn about something from one of our videos and want to know more. Our goal is to build out more robust resource offerings on the site, but that takes money. Most people don’t know this, but we’re a very tiny group. There’s me, our ED who’s our only employee, some talented teams of consultants and our super dedicated Fellow.
Sara Johnson: Should assisting people in creating a meaningful end-of-life care plan or facilitating the creation of plans by loved ones be a standard component of employer health and well-being initiatives?
Dr. Shoshana Ungerleidger: Yes, absolutely end-of-life planning should be part of every workplace program. Just in terms of lost productivity, the time it takes people to sort out the practical things alone is huge. Helping employees with some guidance as to where to go for vetted advice and other resources would make a very big difference to their well-being and also to the workplace at large. If people have to sneak off to tend to the most important stuff then talking about that stuff becomes even more taboo.
Sara Johnson: What other roles can employers play in improving the end-of-life care experience and how people navigate caregiving, death, dying, and grieving?
Dr. Shoshana Ungerleidger: Offering time off for people taking care of or even just visiting with someone who is dying or to arrange and attend services as well as time after while they are grieving would be enormously beneficial. That said, in an ideal world, these benefits and resources wouldn’t be tied to employment.
Sara Johnson: Are you aware of employers who are leaders/positive role models for comprehensive advanced care planning/end-of-life care benefits/programs?
Dr. Shoshana Ungerleidger: I’ve learned that unfortunately, even with the more enlightened organizations, work-place policies change all the time.
Sara Johnson: Are there best practices we should be aware of with regard to how we elicit people’s wishes?
Dr. Shoshana Ungerleidger: I always bring it back to having end-of-life planning conversations early and often and grounding these conversations in what are a person’s goals and values for not just their care but more importantly, the quality of the life they have left to live. For some people, that’s having every possible medical intervention, for others, it’s about being at home with their cat on their lap.
Sara Johnson: Assisting individuals in clarifying their values and goals is often a central tenet of health promotion and well-being interventions. How does value and goal clarification facilitate end of life care planning?
Dr. Shoshana Ungerleidger: Healthcare providers, family members and anyone else who might have some influence on where you are and what care you’re receiving at the end of life need to know what you care about. And, if you don’t know what that is, thinking about your ending now might help you answer some fundamental questions about who you want to be along the way.
