Fifty years ago this November, when Eleanor Roosevelt's doctor told her that her very debilitating disease was tuberculosis, and potentially curable, he expected her to be thrilled. But she instead uttered "I want to die" three times.
As the Affordable Health Care Act goes into effect, much attention is being paid to end-of-life care, and with good reason. Expenditures during patients' last year of life are enormous -- totaling roughly 25 percent of all Medicare costs -- and often not very effective. Yet patients, health care providers and even insurers have a hard time saying no to such interventions.
Mrs. Roosevelt's case vividly demonstrates how crucial it is for physicians to have frank end-of-life discussions about goals of care with patients and families -- something that is still too often avoided. By challenging her physicians on this topic, she was, as usual, ahead of her time.
Mrs. Roosevelt first became ill in April 1960 when she was 75 years old. Doctors diagnosed her with aplastic anemia, a disease in which the bone marrow does not make sufficient red blood cells. Over the next two years, Roosevelt underwent frequent testing as doctors tried to figure out both the cause of her anemia and occasional fevers. Despite her illness, she remained extremely active, traveling to Israel and Europe in February 1962.
But by July 1962, she was much worse. In addition to her anemia, which required frequent blood transfusions, she had daily temperatures as high as 104 degrees. Doctors admitted Mrs. Roosevelt to New York's Columbia-Presbyterian Medical Center for one week but her symptoms persisted.
Mrs. Roosevelt's doctors wanted her to be readmitted but she refused. When she finally agreed in late September 1962, she exacted a promise from her primary doctor, David Gurewitsch: When she asked to be discharged, he would consent, regardless of her condition. Dr. Gurewitsch, a rehabilitation specialist, was also a dear personal friend of Mrs. Roosevelt.
The famous patient gamely tolerated three weeks of invasive testing. By this point, her doctors suspected that her longstanding fevers might be due to tuberculosis that had spread throughout the body, known as miliary tuberculosis, and had prescribed pills. But the results were not back.
In mid-October, Mrs. Roosevelt told Dr. Gurewitsch and her children she wanted to go home. "Patient very miserable with temperature rising," read one nursing note. Although Dr. Gurewitsch planned to honor his promise, several other Columbia physicians remained quite concerned their patient was no better and still lacked a definitive diagnosis.
Dr. Randolph Bailey was more sympathetic. "Everything has been done diagnostically that can be done," he wrote in her chart. "Mrs. Roosevelt is determined to go home and she has a right to make her own decision." So on October 18, home she went, driving through her beloved Central Park one last time.
One week later, the diagnosis of tuberculosis -- usually a treatable infection -- was confirmed. Now Dr. Gurewitsch did a 180, announcing that his patient's chance for a cure had gone up "5000 percent."
But when he told Mrs. Roosevelt the news, she reiterated her wish to die. Her children ardently agreed with her.
So Mrs. Roosevelt stayed home. She continued to take pills, but on November 4, 1962, she became comatose. Three days later the "First Lady of the World" was dead.
It turned out that Mrs. Roosevelt's tuberculosis had been drug-resistant and thus incurable. But it is unlikely that she would have cared. By late 1962, Mrs. Roosevelt had been ill for two-and-one-half years. In one of her final "My Day" newspaper columns, she used the phrase "articles of torture" to refer to her hospital testing. Even if her tuberculosis had been treatable, she had numerous other medical problems that would have still plagued her. It is unlikely she would ever have returned to the vigorous lifestyle she so enjoyed.
Hospitals remain full of elderly patients as or more ill than Eleanor Roosevelt receiving aggressive and expensive medical interventions ranging from ventilators to hemodialysis to intensive care. Even when they prolong life, they often cannot reverse terminal conditions. The ACA is a wonderful opportunity for us to reassess the true value of medical treatments. Just because someone is admitted to the hospital or has a condition that can be temporarily ameliorated does not mean that we must blindly forge ahead. There is something to be said for dying at home like Eleanor Roosevelt did -- unattached to any machines.