When Eleanor Roosevelt died on this day (7 November) in 1962, she was widely regarded as “the greatest woman in the world.” Not only was she the longest-tenured First Lady of the United States, but also a teacher, author, journalist, diplomat, and talk-show host. She became a major participant in the intense debates over civil rights, economic justice, multiculturalism, and human rights that remain central to policymaking today. As her husband’s most visible surrogate and collaborator, she became the surviving partner who carried their progressive reform agenda deep into the post-war era, helping millions of needy Americans gain a foothold in the middle class, dismantling Jim Crow laws in the South, and transforming the United States from an isolationist into an internationalist power. In spite of her celebrity, or more likely because of it, she had to endure a prolonged period of intense suffering and humiliation before dying, due in large part to her end-of-life care.
Roosevelt’s terminal agonies began in April 1960 when at 75 years of age, she consulted her personal physician, David Gurewitsch, for increasing fatigue. On detecting mild anemia and an abnormal bone marrow, he diagnosed “aplastic anemia” and warned Roosevelt that transfusions could bring temporary relief, but sooner or later, her marrow would break down completely and internal hemorrhaging would result. Roosevelt responded simply that she was “too busy to be sick.”
For a variety of arcane reasons, Roosevelt’s hematological disorder would be given a different name today – myelodysplastic disorder – and most likely treated with a bone marrow transplant. Unfortunately, in 1962 there was no effective treatment for Roosevelt’s hematologic disorder, and over the ensuing two years, Gurewitsch’s grim prognosis proved correct. Though she entered Columbia-Presbyterian Hospital in New York City repeatedly for tests and treatments, her “aplastic anemia” progressively worsened. Premarin produced only vaginal bleeding necessitating dilatation and curettage, transfusions temporary relief of her fatigue, but at the expense of severe bouts of chills and fever. Repeated courses of prednisone produced only the complications of a weakened immune system. By September 1962, deathly pale, covered with bruises and passing tarry stools, Roosevelt begged Gurewitsch in vain to let her die. She began spitting out pills or hiding them under her tongue, refused further tests and demanded to go home. Eight days after leaving the hospital, the TB bacillus was cultured from her bone marrow.
Gurewitsch was elated. The new finding, he proclaimed, had increased Roosevelt’s chances of survival “by 5000%.” Roosevelt’s family, however, was unimpressed and insisted that their mother’s suffering had gone on long enough. Undeterred, Gurewitsch doubled the dose of TB medications, gave additional transfusions, and ordered tracheal suctioning and a urinary catheter inserted.
In spite of these measures, Roosevelt’s condition continued to deteriorate. Late in the afternoon of 7 November 1962 she ceased breathing. Attempts at closed chest resuscitation with mouth-to-mouth breathing and intra-cardiac adrenalin were unsuccessful.
Years later, when reflecting upon these events, Gurewitsch opined that: “He had not done well by [Roosevelt] toward the end. She had told him that if her illness flared up again and fatally that she did not want to linger on and expected him to save her from the protracted, helpless, dragging out of suffering. But he could not do it.” He said, “When the time came, his duty as a doctor prevented him.”
The ethical standards of morally optimal care for the dying we hold dear today had not yet been articulated when Roosevelt became ill and died. Most of them were violated (albeit unknowingly) by Roosevelt’s physicians in their desperate efforts to halt the progression of her hematological disorder: that of non-maleficence (i.e., avoiding harm); by pushing prednisone after it was having no apparent therapeutic effect; that of beneficence (i.e., limiting interventions to those that are beneficial); by performing cardiopulmonary resuscitation in the absence of any reasonable prospect of a favorable outcome; and that of futility (avoiding futile interventions); by continuing transfusions, performing tracheal suctioning and (some might even argue) beginning anti-tuberculosis therapy after it was clear that Roosevelt’s condition was terminal.
Roosevelt’s physicians also unknowingly violated the principle of respect for persons, by ignoring her repeated pleas to discontinue treatment. However, physician-patient relationships were more paternalistic then, and in 1962 many, if not most, physicians likely would have done as Gurewitsch did, believing as he did that their “duty as doctors” compelled them to preserve life at all cost.
Current bioethical concepts and attitudes would dictate a different, presumably more humane, end-of-life care for Eleanor Roosevelt from that received under the direction of Dr. David Gurewitsch. While arguments can be made about whether any ethical principles are timeless, Gurewitsch’s own retrospective angst over his treatment of Roosevelt, coupled with ancient precedents proscribing futile and/or maleficent interventions, and an already growing awareness of the importance of respect for patients’ wishes in the early part of the 20th century, suggest that even by 1962 standards, Roosevelt’s end-of-life care was misguided. Nevertheless, in criticizing Gurewitsch for his failure “to save [Roosevelt] from the protracted, helpless, dragging out of suffering,” one has to wonder if and when a present-day personal physician of a patient as prominent as Roosevelt would have the fortitude to inform her that nothing more can be done to halt the progression of the disorder that is slowly carrying her to her grave. One wonders further if and when that same personal physician would have the fortitude to inform a deeply concerned public that no further treatment will be given, because in his professional opinion, his famous patient’s condition is terminal and further interventions will only prolong her suffering.
Evidence that recent changes in the bioethics of dying have had an impact on the end-of-life care of famous patients is mixed. Former President Richard Nixon and another famous former First Lady, Jacqueline Kennedy Onassis, both had living wills and died peacefully after forgoing potentially life-prolonging interventions. The deaths of Nelson Mandela and Ariel Sharon were different. Though 95 years of age and clearly over-mastered by a severe lung infection as early as June 2013, Mandela was maintained on life support in a vegetative state for another six months before finally dying in December of that year. Sharon’s dying was even more protracted, thanks to the aggressive end-of-life care provided by Israeli physicians. After a massive hemorrhagic stroke destroyed his cognitive abilities in 2006, a series of surgeries and on-going medical care kept Sharon alive until renal failure finally ended his suffering in January 2014. Thus, although bioethical concepts and attitudes regarding end-of-life care have undergone radical changes since 1962, these contrasting cases suggest that those caring for world leaders at the end of their lives today are sometimes as incapable as Roosevelt’s physicians were a half century ago in saving their patients from the protracted suffering and indignities of a lingering death.