What Eleanor Roosevelt’s final days can teach us about end-of-life care

Eleanor Roosevelt 1

When Eleanor Roosevelt died in 1962, she was one of the most well respected people in the world. She played an outsized role as First Lady during Franklin Delano Roosevelt’s presidency, and after his death she continued as an international figure in her own right, serving as a United Nations delegate and forceful human rights activist.

Perhaps because of her fame, when she was diagnosed with a fatal form of anemia in 1960, her physicians went to extraordinary lengths to try to prolong her life. She was subjected to an extended, humiliating period of suffering before she ultimately passed away two years later, in spite of her own requests to stop treatment.

University of Chicago Medicine bioethicist Daniel Sulmasy, MD, PhD, revisited Roosevelt’s story in a case study published last month in the American Journal of Medicine. She died at a time before end-of-life practices that we now take for granted in medicine—do not resuscitate orders, advance directives, hospice care, etc.—didn’t exist or weren’t widespread. New technology and treatments that could bring a patient back from the brink of death, like cardiopulmonary resuscitation (CPR) and mechanical ventilators, were also just beginning to be used.

Sulmasy, who is the Associate Director of the MacLean Center for Clinical Medical Ethics, said physicians hadn’t yet begun to think about the limits of this powerful new medical technology when Roosevelt died. “The mere fact that we can do something doesn’t mean that we ought to. But as the technology emerged, people hadn’t been able to get their minds around that fact,” he said.

Roosevelt was initially diagnosed with aplastic anemia, a disease in which the body doesn’t produce enough blood cells. Her physician, Dr. David Gurewitsch, gave her transfusions, which provided temporary relief but left her with severe bouts of chills, fever and bleeding. They also prescribed corticosteroids, which reactivated the latent tuberculosis in her body, making matters worse.

Despite her family’s pleas to end the suffering, Gurewitsch continued treatments. He even tried (unsuccessfully) to revive her with CPR and a shot of adrenalin directly into the heart when she finally stopped breathing on November 7, 1962. Years later, Gurewitsch admitted he had not done the right thing by ignoring Roosevelt’s pleas, but he felt that when the time came to allow to her die peacefully “his duty as a doctor prevented him.”

In his case study, Sulmasy points to a number of developments in the years since that make Roosevelt’s prolonged death seem both archaic and unnecessary. Physicians have largely turned away from using extraordinary means to prolong life for dying patients, and patients and their families now expect to participate proactively in such decisions. High-profile court cases about removing patients from life support, such as that of Karen Ann Quinlan, have brought these topics into the national conversation, and an entire field of bioethics has emerged with a strong focus on end-of-life issues.

FDR and Eleanor Roosevelt

Today, despite many more controversial questions about euthanasia and assisted suicide, Sulmasy says mainstream opinion has swung toward respecting patients’ wishes when they ask to forgo treatment.

“I think the mainstream is much better,” he said. “Despite those things happening at the periphery, the prevailing opinion is that if an Eleanor Roosevelt said today, ‘Don’t treat me,’ people would not treat her. Physicians today would say, ‘We don’t have anything more to offer that will cure you or substantially prolong your life,’ and even if she were a celebrity or VIP, they would have been more likely to respect that decision.”

And what, if any, lessons can the medical community take from Eleanor Roosevelt’s death, 52 years and a revolution in ethical thinking later?

“We have to always be vigilant, in our zeal to treat people, not to do things that will only make them worse,” Sulmasy said. “We need to pay attention to what patients say to us, because they are the ultimate people who have a say in what happens to them. We need to partner with them rather than tell them what to do.”

About Matt Wood (468 Articles)
Matt Wood is a senior science writer for the University of Chicago Medicine and editor of the Science Life blog.
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