Modern physicians may give medical advice to their family members or, in a pinch, write them a prescription for a low-risk medication. (They’re not really supposed to, but it happens.) But most would never take charge of a relative’s care, especially for a serious disease.
The American Medical Association agrees, writing in its 1993 Medical Code of Ethics that “physicians generally should not treat themselves or members of their immediate families.” “Because a clinical encounter with a family member is not a typical doctor-patient relationship,” a 1999 ethics case study advised, “physicians caring for family members may tend to ignore standard guidelines, such as respecting a patient’s right to decide about treatment, informing the patient about the risks and benefits of treatment and plausible alternatives, telling patients the truth and respecting confidentiality.”
But over a roughly 25-year span, my father, Phillip I. Lerner, acted as the primary doctor for his relatives several times. He recorded some of the details and his rationale in his journals. Reviewing these cases for a book on my dad’s career in medicine, I was perturbed and even appalled at some of his decisions. Yet, I had to ask myself: Were there lessons here for modern physicians? After all, it is hard to imagine any patients receiving more intimate care and attention than did these relatives.
My father did not set out to become the family’s doctor. It simply emanated out of the type of physician he was. Trained at a time when residents practically lived in the hospital, and were mentored by senior physicians who viewed patient care as a 24-hour, seven-day commitment, my dad had no tolerance for what he believed was inadequate or incompetent care. He spent hours during our family vacations on the phone with covering physicians and insisted that we travel only at the end of the month. It was then, after his younger colleagues had spent at least two weeks getting to know the patients on the service, that my father finally felt comfortable going away.
The first time my father intervened was in 1975, regarding the care of my maternal grandfather, Mannie, who was in his mid-70s and mildly demented. When Mannie suddenly developed ischemic bowel, in which part of his intestines were not getting blood, the only option was emergency surgery, which was risky and might not succeed. As far as I can tell, my dad unilaterally—without asking my grandmother or mother—decided that surgery would not be done and Mannie should be made comfortable. “The only thing I can say,” my dad later wrote, “is that he was failing very quickly and this had to be the best way for him and for Nana.”
This “doctor knows best” mentality embodied the paternalistic ethos that had long dominated medicine. The new bioethics movement, with its emphasis on patient autonomy, was still in its nascent stage in the mid-1970s. Yet by intervening so blatantly in the care of a family member, my dad was not only being paternalistic but also had a conflict of interest: He was acting as both a son-in-law and a doctor.
In 1982, my father’s uncle Mickey became ill. The news was grim: Pancreatic cancer that had spread to the liver. Blurring the line from the start, my dad—not Mickey’s own doctor—gave Mickey the diagnosis and prognosis. During Mickey’s final hospitalization that summer, my dad visited him every day to make sure his uncle was getting adequate palliative care. He stayed in Cleveland with Mickey instead of driving me to New York, where I was beginning medical school.
Four years later, one of his aunts, who had cancer and lived in a nursing home, was admitted to the service being run by my father. My dad argued strongly against aggressive interventions, writing that he was trying to perform “passive euthanasia.” This time, however, his colleagues called him out. The house staff, he wrote, objected to his “minimalist approach.”
In the early 1990s, my father’s cousin Donald developed metastatic prostate cancer. My dad was very involved, making suggestions and writing prescriptions—especially when his cousin was having difficulty reaching his doctors. “I suddenly find myself taking care of my cousin Donald,” he wrote.
Later, when the pain from the bony metastases had become severe, my dad believed that Donald’s primary physician was not treating his cousin’s pain aggressively enough. He called Donald’s wife to urge her to tell that doctor to “ease” Donald “out of this terrible suffering.”
But it was with my two grandmothers where my father truly became too involved, aggressively pushing for interventions that had as much to do with his being a relative as a doctor. In 1997, Pearl, his 88-year-old mother, suffered a bleed in her brain that left her comatose with no chance for recovery.
All of the physicians agreed that the prognosis was grim, but that was not enough for my father. Pearl’s worst fear, which she had often stated, “was to have a stroke and have to live a limited existence, dependent on others for her basic necessities.” For my dad, every minute she lived in a coma was a betrayal, causing her to linger in a way she had vehemently rejected.