Physician Explores Family’s End-of-Life Journey in New Podcast

As host of the TED Health podcast, Shoshana Ungerleider, MD, is no stranger to podcasting. But now, the internist turned the mic on herself to explore death and mortality through the lens of her own experience losing her father to pancreatic cancer. Her eight-episode show is called “Before We Go” and is available on all podcast platforms (Spotify, Apple) with new episodes each week through early December.

Ungerleider is also the president and founder of the nonprofit End Well, which among other ventures, runs an annual conference bringing together healthcare and pop culture leaders to discuss end-of-life care.

MedPage Today spoke with Ungerleider about her experience as a physician and medical journalist reporting on her own family’s story and what she learned about end-of-life care through the process. This interview has been edited for brevity and clarity.

How did “Before We Go” come to be?

Ungerleider: My father died from pancreatic cancer in the spring of 2023. In my experience as an internist and as someone who is an expert on end-of-life through my work with End Well, there were so many things that kind of shocked me along the way. Despite the fact that I had the knowledge, the expertise, and the resources to provide him with a good end-of-life experience, there were so many places that we ran into unexpected obstacles. I wanted to share my story, really, with the goal of helping other people who might be facing the same kind of journey, and how to find the balance between being a doctor and being a daughter. And so it’s sort of this narrative journey talking about my own experience, talking with renowned experts, and then really this bigger conversation about how to find meaning and purpose in the face of life’s biggest challenges.

What did you learn that you wish you knew sooner?

Ungerleider: So many things. I think most clinicians know this, but our system is just so incredibly fragmented and broken and it is so hard to get the services that you need in these moments of crisis. And even in the best of circumstances — when you know who to call and understand the system — it’s still incredibly hard. That really hit me like a ton of bricks.

I think that one interesting thing that I hadn’t anticipated was how hard it was going to be for me to be a daughter through this journey and a loved one supporting my father as opposed to his doctor, or to remain in sort of problem-solving medical care mode. I think that many of us in medicine are certainly trained to jump in — whether it’s in an acute crisis or caring for someone long-term — and sort of be the one that the family turns to for help, answers, and guidance. But there comes a point where it’s important to draw boundaries and say, “My job is to not be your doctor. I can certainly be an advocate for you, but I’m a loved one in this scenario.” It was shocking to me how hard that was for me to kind of say, “No, Dad, you need to listen to your doctors. I can’t solve this problem for you.” Especially as I also became the patient, I struggled with how to take care of my own health through that journey.

What surprised you about this experience?

Ungerleider: I changed my mind about medical aid in dying, which surprised me. I always thought that if everyone has access to high-quality palliative care and hospice services throughout their medical journey that we maybe don’t have to opt for ending one’s life. And this experience just showed me how complicated and multilayered people’s own experiences of illness can be. Again, I don’t think this is for everyone or that everyone should opt to end their own life in the face of a terminal illness, but making this option available to more people, should they want it.

My dad ultimately did not opt for it. I sort of wish that he would have, because certainly hindsight is 20/20, and he suffered so much and I feel a little responsible for some of that. We really encouraged him to get aggressive, invasive chemotherapy because we thought he might benefit from newer targeted therapies related to the BRCA mutation, and unfortunately that wasn’t the case.

Also, I was the one who was at my father’s bedside as he was actively dying. And I have seen so many people in that situation. If you end up being the person giving that last dose of medicine, there’s actually a lot of guilt that can come up around that. And again, even as a physician and somewhat of an expert in this space, I was second guessing myself, saying, “Oh my goodness, I gave him morphine and then he took his last breath. Am I responsible for his death?” And of course, the answer is no, and we know that. But it is hard, so human, to sort of ask these questions and to carry that pain and guilt around. I think we need to do a better job in hospice of explaining the philosophy of care is such that this person is dying regardless of what medicine they’re being given or anything that we do. Their illness is what’s taking them and anything that we can do to support them, to make them more comfortable and relieve symptoms along the way is such a beautiful gift.

One theme of your podcast is how little physicians learn about death and dying in their training. Can you speak to that?

Ungerleider: Things are changing slowly. There are plenty of institutions now that have much more robust training in palliative care and communication skills, even since I trained. But we need to do a better job of seeing in our role as physicians that there is an opportunity for healing, for caring for our patients through to the end of life, even when cure is not possible. And I think in medicine, just like in society, we see death as a failure — and we do everything we can to avoid failure.

I think we’re missing really important opportunities to be good clinicians, to be good humans, and to be thinking about how to talk to patients early and often about their prognosis, goals of care, and really trying to listen to them, to understand their wishes and fears and hopes, especially if time is short. It also means offering patients comprehensive palliative care at the time of a serious illness diagnosis.

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