How This Doctor Is Bringing Human Connection Back to End-of-Life Care

Dr. Shoshana Ungerleider

By Rimma Boshernitsan

Dr. Shoshana Ungerleider is bringing together a cross-disciplinary set of minds to reimagine what dying in America looks like today starting with palliative care in the United States. After years of seeing how the system provides less-than-desirable services to patients and their families, Ungerleider extended her career as an internist at one of the best teaching hospitals in the country to focus on awakening a global movement with the End Well Foundation.

Born just outside of Eugene, Oregon, Ungerleider never thought she would become a doctor. Majoring in science with a focus on marine biology, she very quickly realized that she preferred interacting with humans and took her career in a different direction. It was a chance internship at Duke University that sparked an interest in medicine. With the support of her mentors, she applied and completed medical school at Oregon Health & Science University in Portland.“I always knew that I wanted to be in service of other people in some way, I just didn’t know what that looked like,” Ungerleider said. “It was always very important to me. “I realized medicine was the path for me.”

Ungerleider completed her residency program at California Pacific Medical Center in San Francisco. After a rotation in the ICU, she realized that most of her patients were older, with chronic diseases and in a state that was not going to drastically improve. “Nothing that we were going to do for them was actually going to help them,” Ungerleider realized. “We were not turning back the clock on their age, we were not going to be able to cure their cancer that was widely metastatic, and we couldn’t give them a new heart.” Many of her patients were suffering and dying, hidden away from people they love, she found. And they and their families were not provided with options or a conversation about what was going on. “I realized that it’s sort of the default thing that we do in this country—no matter how old you are, no matter how sick you are, you will be admitted to an ICU, even if it won’t help you,” she said. She soon asked herself, What is the bigger picture? What is it that doctors are meant to do for patients, and are we doing that for everyone we serve?

Per a 2016 study in the Journal for American Medical Association, a peer-reviewed medical journal, 70 percent of doctors surveyed in the U.S. said they have not been trained to have difficult conversations with patients. “If communication is one of the biggest parts of the job, then how is it possible that the least amount of time is spent on exactly that,” pondered Ungerleider.

She discovered that there was a hugely under-recognized, epidemic happening in hospitals for patients to truly have human-centered care, with a lot of that being directed toward serious illness and end-of-life conversations. And, this is especially important when doctors are trained. “As physicians in training, we are often the very first people to see a patient when they come to the hospital. It’s actually possible to change the course of their treatment trajectory if physicians know how to have conversations with patients and their families based on their goals and understanding what it is that they value in their lives. Much of that doesn’t get translated into the care that they receive, and we must do something about that,” said Ungerleider.

In shifting her own conversations with patients, Ungerleider started a clinical program to train residents and medical students to have competence in palliative medicine starting with communications training. Palliative care is a field of medicine that is fairly new, a multidisciplinary, approach to medical care that is focused on quality of life for patients and their families facing terminal illnesses. Providing necessary support and comfort beyond hospice, palliative care can be used at any time during the course of an illness.

Ungerleider’s work with the hospital’s foundation inspired the inception of her own foundation, focused on bringing awareness and public engagement to the systemic change that is necessary for people to live life more fully to the very end. “I was interested in creating a shift in how society motivates people to have conversations about this topic with people they love, so that if they do end up in a situation where they are receiving medical care, the care that they get is the care that they want. I want everyone to understand their options, and how to make decisions in line with their goals and the values of how they live their lives. That, to me, is good medicine, whether we’re talking about diabetes care and high blood pressure or about the end-of-life experience,” she said. In 2014 , Ungerleider started the Ungerleider Palliative Care Education Fund to do exactly that. With the mission to further palliative care education at every level. In collaboration with the California Pacific Medical Center Foundation, the Ungerleider Fund initiated a comprehensive education program to enhance medical training around advanced illness and end of life care, physician communication and wellness for healthcare providers at Sutter Health’s California Pacific Medical Center. The foundation has financed the production of two films, both acquired by Netflix—End Game (with directors Rob Epstein and Jeffrey Friedman) and Academy-Award nominated Extremis (by director Dan Krauss) both —with the goal of educating and expanding the thinking around decision making, palliative and end-of-life care.

When asked about how her foundation became a reality, Ungerleider notes she would go to conferences around the country and meet exceptional people working in palliative care, across policy, hospice or caregiving. “They were and have been doing incredible work, yet it was always the same people. I noticed that we do a lot of ‘preaching to the choir’ in this field and don’t get outside of our traditional spheres of influence to engage other people in a conversation,” she said.

To expand the conversation beyond the medical field, in 2017, Ungerleider launched a one-day, TED-style symposium, End Well, with this very thought in mind. She asked herself, How do we create an opportunity to bring together not just those practicing palliative care but include a cross-disciplinary set of professionals working to amplify this topic through their individual work? Creating a discourse of this nature has opened up unique opportunities to bring the public and private sectors together to more deeply understand the opportunities that exist for patients.

“I feel so strongly that death and dying are not just a medical issue but a purely human issue that behooves all of us to get invested in this conversation,” Ungerleider said. ”My goal with End Well is to bring new voices into the fold, to hear from entrepreneurs who think differently about this space, to hear from patients, caregivers, artists, educators, and my fellow colleagues in medicine, too. We need to lower the barriers of entry to this conversation because we have a wide-open space to innovate new solutions: We have 10,000 baby boomers turning 65 every day in this country. It’s a looming crisis.”

As Ungerleider gears up for this year’s End Well Symposium on December 6th in San Francisco, she attributes the following elements to her success:

Listen first: “Within the first 60 seconds of meeting a patient, I can often learn more by simply listening than by talking. For patients to be engaged in their own health, they must understand their diagnosis, treatment and potential outcomes. This starts with listening to them,” she said.

Focus, focus, focus: “One of the things that my husband has instilled in me is being very goal-oriented, so I’m hyper-focused around palliative care, hospice, end-of-life—that is all that I do. My mission is to have conversations about mortality be so commonplace that I don’t need to do this work anymore, that palliative care can go away as a field because how all medicine is practiced is good medicine. That is my end goal and everything I do; I align with that goal,” she said.

Be open to opportunities: “I never imagined I’d end up running a foundation, executive producing films and starting international conferences. The opportunity to be part of the films was unexpected and it’s because I remain open and curious about how new opportunities play into advocating the work I’m doing.” Ungerleider said.

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