A Doctor’s Quest to Change the End-of-Life Experience
Shoshana Ungerleider, M.D., is a physician, founder, speaker, producer and writer. In 2017, she founded the End Well Foundation. End Well is a media platform and produces an annual, interdisciplinary gathering which focuses on transforming end-of-life care to make it a human-based experience.
This year, the End Well event will be free, virtual and is called “Take 10” and features celebrities and unsung heroes. You can register here. The event is free but registration is required. Solace is a proud sponsor of Take 10.
What life experience brought you to the field of end-of-life care?
I come at this work from my personal experience as a clinician. I am a general internist and early on in my medical training, I became very interested in the importance of good communication between physicians, patients and families after seeing so many frail, older people suffer in the ICU in their last moments of life. Most of them did not have a say in their trajectory, nor did they know what was going on moment-to-moment because the health care system isn’t set up for taking a pause to have critical conversations about what matters most to people.
I’ve dedicated my career to making sure that all people receive end-of-life care that’s in line with their goals and values, and families and caregivers are supported and heard.
Did medical school prepare you to understand dying and what people need at the end of life?
Sadly, not at all. From my perspective, it starts with training for clinicians in how to have difficult conversations with patients, to get comfortable with the un-comfortable.
I trained in the late 2000s before this was part of the standard curriculum. Now, things are changing, but we are very far from where we need to be.
According to 2016 data from The John A. Hartford Foundation national survey published in the Journal of the American Geriatrics Society Association, 71% of physicians reported they had not received training in how to have these conversations. These data also showed that 46% of physicians were unsure about even what to say.
Despite widespread acknowledgement in the medical field that these conversations are vitally important, medical education has not prioritized them. We need to treat communication as a procedure that we teach, similar to how we teach residents to perform surgery.
Would you like to see fewer people in the hospital setting when they are dying?
To me, it’s less about where they are and more about how they are being supported and cared for. The goal is to provide this in ways that they truly desire and allow them to live well each day (for however long they have). For some, that’s in a hospital or another facility and for others, that’s at home.
How did End Well Begin?
I had a major “aha moment” after working with a team of designers on a project. After learning about design thinking as a framework for problem solving, I realized that what I was after was fundamentally a conversation about living, not dying.
I’ve also learned that with health care in general, and end-of-life care in particular, most people are head down working as hard as they can AND the work is largely siloed. Improving the end-of-life experience is a challenge that we simply can’t tackle from inside health care. Nor, should we.
Ending well is a human issue, not just a medical one. So, I founded End Well to explicitly invite people from all backgrounds to join together as the first cross-disciplinary platform for problem-solving to transform perception, policy and care around how our political, social, familial and personal structures can best be advanced to support a person’s goals and values at the end of their life.
End Well is annual, draws sold-out crowds, celebrity speakers and cutting-edge scientists, designers, entrepreneurs and investors. By inviting new voices to the conversation, we have been able to tap into a growing social movement that envisions the end-of-life experience to be more human-centered for everyone.
What are you most excited about with Take 10?
I’m most excited that we were able to offer this online experience for free, so anyone can join. It has long been a dream of mine to make the annual convening accessible to all, so I am thrilled we’re able to do that this year.
More than ever before, these conversations about caregiving, grief and loss, illness and death are so critical. On December 10, we will take the time to come together, to learn from others, to share our experiences, our grief, and our joy. We’re bringing together celebrities, unsung heroes, and other leading voices from around the world to engage in a new set of conversations about the beautiful, tough and messy gifts of being alive.
Solace is proud to partner with End Well and looks forward to hearing more from Shoshana Ungerleider, M.D. and others focused on creating a human-centered approach to end-of-life care at this year’s event “Take 10” online. You can register here. The event is free but registration is required.