Storytelling in Palliative Care

Monique Schaulis, MD, MPH, FAAHPM

Dr. Jessica Nutik Zitter, MD, MPH, intensive and palliative care in Oakland, is a national advocate for transforming the way people die in America, and is the author of the newly released Extreme Measures: Finding a Better Path to the End of Life. She co-directed and produced an award-winning short documentary, "Caregiver: A Love Story," which examines the rising public health crisis of family caregiver burden through the story of a man as he cares for his wife in the last nine weeks of her life. SFMMS President Monique Schaulis, MD talked with her about her perspectives.

MS: Let's talk about storytelling and palliative medicine. You’ve done a lot of this in your films and books, most recently “Caregiver: a Love Story.” Part of what we do as palliative physicians is draw out a person’s story, and that is a necessary step in caring for patients. JZ: It's the necessary step. You can't tell compelling stories without the “little” details. I don't have data to support this but I think that people who would choose to go into palliative care are those who are inspired and energized by people's stories and the connections around the telling of those stories. That's a big part of what we do in palliative care. Even as an ICU doctor, that was a tendency that I had, which was very anathema to the world of ICU medicine for the most part, which is so technically focused.

MS: Plus, everyone in the ICU has tubes in their mouths! Often they can't talk to you. Jessica, have you ever had the feeling that extracting the story is selfish? JZ: Sometimes I feel this, but then I remember that it forms a human bond that is essential for being a good health care provider.

MS: Yes, these stories that you gather allow you to represent the patients more fully. When I read my palliative care notes, I see that I'm trying to tell the human story in the hospital chart in an attempt to help everyone know the patient better, to go beyond their diseases. I don't know if anyone wants to read the story I am writing, perhaps they might just want the recommended pain plan. But sometimes my colleagues seem drawn in by these details and it engages us all more deeply in patient care. Recently I was writing a note about a patient who told me that he actually didn't want to be intubated. Why? I asked. He told me it was because Vicente Fernandez, his favorite Mexican singer, was on a ventilator. The patient and his wife had seen this and talked about it and decided they wouldn’t want to live that way. But those were the “little” details you were talking about before which told me a lot about him. JZ: This idea that we had in training was that there was a sort of separation of the human and the science. And it was all about the science. It was like bringing the human, the religion, spiritual and the social issues in somehow cheapened our scientific efforts. I know I felt that way. And I know that it's only through the palliative care experiences I've had and through particularly my mentor chaplain Betty Clark, who says to me all the time, “Everybody has a story.” It took many years and I did have to come a little bit kicking and screaming into understanding the therapeutic experience for patients. And also for physicians and healthcare providers of connecting on a human level at the bedside. I don't think that you can do good medicine if you're not connecting in some way whether it's praying if a person wants to pray, or hearing their story, or looking at a picture of them at the bedside. That's what makes for a relationship that allows for healing. Healing includes scientific medical interventions, but it also includes acknowledging a person's story, and personhood. MS: Yes, it is making them be seen. A critical skill in palliative care. Speaking of being seen, I’d love for our readers to be able to see your film Caregiver. What’s the easiest way to see it? JZ: Checkout the website caregiveralovestory.com for screenings around the country or if you’d like to host one email caregiver@ jessicazitter.com.