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Literature and medicine at life’s end

The traditional narrative in American medicine follows a “diagnosis and cure” storyline, with the narrative breaking down or becoming extraordinarily difficult when a cure is no longer possible. Literature can help bridge the gap between medical expertise and patient experience, particularly when preparing for death. This idea was explored in a recent seminar, "Literature and Medicine at Life’s End,” sponsored by the School of Medicine’s Arts, Medicine and Humanities Program.

It's not only the patients and their family who suffer, but physicians are suffering too.

The discussion was led by Alvan Ikoku, MD, PhD, and Sunita Puri, MD. Puri, a Stanford clinical fellow in palliative medicine, read an account of her personal struggle with one particular end-of-life decision for a patient she called “Mr. Smith.” Mr. Smith’s body was so rattled with cancer that it was “hard to tell where the cancer ended and his body began.” He had been admitted to the ER, unconscious, with a dangerous pulse oxygen rate and a blood clot in his lung. There was no family to consult regarding treatment. Puri wrote about the battle between her “text book voice,” which said to treat the blood clot no matter what, and a “deeper voice,” which asked the question, “To what end?”

As Puri and Ikoku discussed, navigating the myriad end-of-life decisions made possible by today’s advanced medical technology is not something that is taught in all medical schools. Ikoku, a Mellon Fellow at the Stanford Humanities Center who has a PhD in English and Comparative Literature, explained that literature can serve to fill that missing component. Using two short stories by physician writer Richard Selzer, MD, "Mercy” and “A Question of Mercy,” Ikoku illustrated how end-of-life situations can be written and read about by physicians, and physicians in training. But there must be space and time for that type of reflection, and today’s hectic healthcare system is not conducive to such reflection.

"It is not only the patients and their family who suffer, but physicians are suffering too,” said Puri, who shared the story of treating another terminal patient at the request of his family, even though he was near death. After the patient coded and had to be intubated, Puri worried that the additional procedures would cause the patient undue pain and distress.

The audience of more than fifty medical students, clinical residents, physicians, teachers, ethicists, and community members, had read both Selzer short stories before the session, and participated in a thoughtful discussion about the lack of end-of-life conversations in American society. One attendee, a clinical resident from Ireland, noted that American culture doesn't talk about death in any meaningful way, often until it's too late. In an interesting comparison of health-care systems, Puri and Ikoku noted that the ICUs in both England and Ireland are much smaller than in the U.S., and decisions are made about the use of health care resources for “the best possible good,” instead of profit. One Palo Alto resident noted that it wasn't just the physicians who needed training in end of life discussions. “That is a big burden we put on our physicians, to have to make those decisions if we have not made it clear beforehand, or shared it with a family member. As patients we need to take responsibility for our own end-of-life treatment.”

The evening ended on a lighter note when a visitor from England said he didn’t understand why in America people were always surprised when an elderly person died. “What do you THINK is going to happen?” he asked gently.

"Literature and Medicine at Life’s End” was part of a seminar series that explores the intersection between arts, medicine, science, humanities and technology. It's sponsored by the Stanford Center for Biomedical Ethics, the Stanford Humanities Center, and the Stanford Arts Institute, and is supported by generous benefactors.

Jacqueline Genovese is assistant director of the Arts, Humanities and Medicine Program within the Stanford Center for Biomedical Ethics.

Previously: Thoughts on the arts and humanities in shaping a medical careerCommunicating with terminally ill patients: A physician’s perspectiveAsking the hardest questions: Talking with doctors while terminally ill and A conversation guide for doctors to help facilitate discussions about end-of-life care

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