One Doctor’s Quest to Reimagine How We ‘End Well’

Improving the End-of-Life Experience

Dr. Shoshana Ungerleider is an internal medicine physician, the host of the TED Health Podcast, and a leading voice in healthcare who regularly appears as a medical expert voice on CNN, MSNBC, and CBS News. She contributed to two Academy Award-nominated Netflix documentaries on end of life. In 2017, she founded the End Well Foundation. End Well is a media platform that produces an annual, interdisciplinary gathering that focuses on transforming end-of-life care to make it a human-based experience. We spoke to Dr. Ungerleider in 2020 to understand the changes she advocates for in the end-of-life experience.

How did improving end-of-life care become a passion for you?

“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 or knew what was happening moment-to-moment because the healthcare system isn’t set up for pausing to have critical conversations about what matters most to people.

I’ve dedicated my career to ensuring that all people receive end-of-life care that aligns with their goals and values, and families and caregivers are supported and heard.”

Did medical school help prepare you for dealing with death and end-of-life issues?

“Sadly, not at all. From my perspective, it starts with training for clinicians to have difficult conversations with patients and get comfortable with the uncomfortable.

I trained in the late 2000s before this was part of the standard curriculum. Things are changing now, but we are 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 yet to receive training to have these conversations. These data also showed that 46% of physicians needed guidance about what to say. 

Despite widespread medical knowledge that these conversations are vitally important, medical education must prioritize them. We need to treat communication as a procedure we teach, similar to how we train residents to perform surgery.”

Should fewer people die in the hospital setting? 

“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.”

What inspired you to launch EndWell?  

“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 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 's annual symposium draws sold-out crowds, celebrity speakers, and cutting-edge scientists, designers, entrepreneurs, and investors.

Helping Families Find a Peaceful Ending

Your local funeral provider is dedicated to helping families through one of life’s most challenging journeys: saying goodbye to a loved one. They work with local hospitals, hospices, veteran’s groups, and other organizations who share a passion for compassionate end-of-life care. Experienced funeral providers are available to help before, during, and after a loved one’s passing.

To read about a particularly meaningful tribute, take a look at our article here: Surfer’s Tribute Gives Lost Loved Ones a ‘Last Wave’.