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When I Die, Let Me Live

The first two-part episode of Lauren Kelly, MD’s podcast, “When I Die, Let Me Live,” is not always an easy listen — but that’s kind of the point. Kelly, who graduated from the Perelman School of Medicine earlier this year, aims to present the listener with firsthand stories from patients, families, and caretakers dealing with the myriad physical, mental, emotional, and moral complexities of end-of-life care.

Sometimes, it’s funny. Sometimes, it’s heartbreaking. Sometimes, it’s poignant.

When we meet the subject of the first episode, former Travelers Insurance CEO Jay Fishman, he’s discussing the monumental rarity of being diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease) — and how while many in his situation might see it as a death sentence, he sees it as something different: He’s calm. Analytic. Content to have lived the life he has lived, he refuses to let the disease define him.

“The month before the diagnosis, I thought I was one of the most fortunate, blessed people in the universe,” he says. “For me, this didn’t change that view. This was how my life was going to end. It wasn’t going to be what my life was.”

Fishman, as a member of the University of Pennsylvania Board of Trustees,  continued his support of programs to help others: He and his wife, Randi, funded a new program in Penn Medicine’s Harron Lung Center to provide specialized at-home respiratory care for patients suffering from diseases like ALS. He also facilitated funding for the Penn-run Mobile CPR Project, which  trained community members in Hartford, Connecticut, in the use of cardiopulmonary resuscitation and spread the understanding of CPR to low-income communities.

Fishman’s acceptance and positivity in the face of his diagnosis is remarkable throughout the podcast, but Kelly doesn’t linger on it for too long at any one time, opting instead to have a much more difficult discussion about the medical realities of dealing with a progressive illness like ALS: the seemingly impossible choices, the camaraderie that can develop with one’s physician, and the complexities of relationships with loved ones and caretakers in the advanced stages of illness, to name just a few.

It’s representative of the scope of Kelly’s concept for what the podcast should be.

“The podcast grew out of a strong desire to represent some of the very meaningful conversations I’ve had the privilege of taking part in over the last several years,” Kelly said. “Being in the medical field, I’ve had unique access to this world that’s full of story.”

“I’ve tried to fill each episode with the moments that are relatable, moments that validate multiple perspectives,” she added. “My goal is to encourage all of the stakeholders — patients, caregivers, providers, policymakers — to start talking differently about the end of life.”

Throughout medical school, Kelly —pursuing her residency in Primary Care Internal Medicine — found herself moved by the conversations she witnessed in which physicians guided patients through their most turbulent, difficult decisions. It was a process she learned could benefit from a deeper effort to make sure patients feel heard and understood, and so she became determined to share stories showcasing the potential of the physician/patient relationship.

Following a course at the University of Pennsylvania’s School of Social Policy and Practice that taught her to engage with larger issues through the use of media, Kelly found herself fascinated with the idea of telling stories through audio. A podcasting seminar at Penn’s Annenberg School for Communication helped give her the information and connections she needed to start forming the foundations of “When I Die, Let Me Live.”

Kelly also cited Scott Halpern, MD, PhD, MBE, deputy director of the Center for Health Incentives & Behavioral Economics (CHIBE) and Director of CHIBE’s Fostering Improvement in End-of-Life Decision Science (FIELDS) Program, as being instrumental to getting the podcast off the ground. Kelly, knowing Halpern’s work in end-of-life care research, wanted to interview him — and the meeting developed into a mentorship that led to Halpern’s FIELDS Program sponsoring the podcast.

“I was overwhelmed and honored that someone of Scott’s academic distinction wanted to support the work I was doing,” Kelly said. “I think we are seeing across the medical field a growing recognition that engaging with patient stories is crucial to the practice of patient-centered medicine.”

“There are so many treatments, so much information out there that overwhelms our patients,” she added. “It’s our job as physicians to listen closely and know our patients well, so that we can guide them through the uncertainty.”

On top of telling patient and caregiver narratives, the podcast in a way also presents the narrative of Kelly herself as she navigates the world of end-of-life care, learns how to talk with a wide array of individuals about death, and gathers further understanding about an inherently complex subject.

It can, has, and will become personal for her, sometimes deeply so — like in an upcoming episode wherein Kelly interviews her stepfather, who has Alzheimer’s disease.

“That was an incredibly emotional conversation or me, but I wanted to let others hear what it sounded like,” Kelly said. “It’s never easy to discuss these things, but it can be so fulfilling when we let ourselves go there.”

She describes these sorts of conversations as “intimate,” and without question they are. It can get uncomfortable. Listening to Fishman, his breathing aided by a machine, is at times harrowing. In the second part of the first episode, he discusses his choice to receive or forego a tracheostomy — a procedure undergone by ALS patients when their muscles no longer allow them to breathe independently, which is a choice made difficult by how limiting and cumbersome the resulting ventilation can be.

If given the option of a shorter but less limited life, versus a longer and more limited life, what would you choose? It’s a difficult choice to fathom, but Fishman and Kelly unpack his decision as calmly and resolutely as anyone could.

The result is a podcast that makes its listener confront a challenging subject in a new way, and gives credence to the notion that these conversations aren’t as inaccessible as we might fear. Kelly’s intended audience is, simply put, everyone: patients, caregivers, and even providers — because these conversations impact them as well.

“Physicians struggle with the topic of death just as much as the rest of us do,” Kelly said. “It’s my hope that, in hearing the podcast, physicians might be open to trying different approaches with their patients. I want to create a space for providers to reflect, to let themselves acknowledge their own feelings about death as it comes up in their work.”

Lauren, her fascination with storytelling, and how it has impacted her journey through medicine thus far will also be part of a feature in the upcoming summer issue of Penn Medicine Magazine.

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