The Good Doctor (23 page)

What made my father believe he had the authority to make these decisions? Once again, it was his immersion in the medical and emotional care of a patient over a prolonged period. During the two-plus years he cared for Jonathan, my dad often called his patient from meetings, and once, while flying to New Orleans, he even arranged for a special X-ray test to be done. There was always a contingency plan for Jonathan and his family if my father was out of town and could not easily be reached. “We became ‘friends’ in a sense,” my father reflected.

Near the end, when Jonathan was on a respirator in the intensive care unit and beginning to fade, his doctor took his hand. “He squeezed my hand in return, as he smiled at me,” my father wrote, “thanking me, I think, for being so concerned about him.”

As would be expected, my father attended Jonathan’s funeral, where his role in the case was praised by Jonathan’s father. Later that day, he paid his condolences at the family’s home, where he was able to speak to several of Jonathan’s relatives. “I was particularly touched by his sister,” my father wrote, “who embraced me with such a genuine show of affection for my role in her brother’s illness that I felt she considered me a part of their family when it came to the mourning process I too needed to resolve.” My dad was also especially pleased when he received a note from Jonathan’s parents thanking him for the “gentle way” he helped their son die.

Reading my father’s account of Jonathan’s saga was a moving experience for me. Jonathan had died as a young man—he was only five years older than I—and of a terribly frightening and devastating disease. My father had given his patient terrific medical care and emotional support. Still, I was not prepared for what happened as I went through my father’s journal entries: a photo of Jonathan, sent by his parents, dropped out. And there he was, in the flesh: a smiling, carefree man. On the back was a Post-it with a brief, typed note:

phil:
this was jonathan before he was stricken with aids.
and, it’s the way we will always remember him.

Of course, on second thought, I realized it made perfect sense. Why wouldn’t Jonathan’s parents want to send my father such a picture? And why wouldn’t my father want to have it?

Reading about Jonathan’s 1994 death made me reflect on the episode that occurred two years after, when my dad prevented CPR on the woman with arthritis. Could it be argued that in both instances, as well as with my father’s other AIDS cases, there was a medical reality that actually enabled him to know the “right” decisions? By this I do not mean that there was only one possible course of action and that only my father knew it. But had medicine, in an era of patients’ rights and splintered care, somehow become too democratized? And as a result, were patients routinely undergoing inappropriate interventions and experiencing needless suffering?

My father would have unswervingly answered yes to these questions. The theme of knowing came through constantly in his journals. Describing his reaction upon learning that Jonathan had developed an enlarged spleen and ascites, my father later wrote, “I knew that we now had to think only of keeping him comfortable.” “I know what I did was right,” he remarked after Jonathan died, “because all of my colleagues who helped me care for him—and there were many—were equally relieved that his suffering was over and the end came swiftly and peacefully.” When discussing the demented patient who had feeding and breathing tubes and whose family was waiting for a miracle, my dad made his case most forcibly. “I know in my heart,” he unabashedly declared, “when certain patients are ready to go.”

Such language could not have been more reminiscent of some of the quotes from the breast surgeons and other postwar doctors I had researched. I had termed them
arrogant
, and my father sounded much the same. Yet maybe, as my father might have suggested, his obligation in both of these cases was exactly the same: to use his medical knowledge and his knowledge of the patient to do the right thing. Perhaps, to rewrite Peabody’s old saw mentioned at the beginning of this chapter, the secret of the care of the patient was in learning as much as you could about the patient and his or her disease and dutifully using that knowledge to make the best choices for that person. The sociologist Charles Bosk has called this type of interaction the idealized fiduciary relationship between a powerful and devoted doctor and his or her patient.

In the prologue to this book, I mentioned a statement made by Columbia gastroenterologist Robert Whitlock in which he called Robert Loeb “the best damned ethicist I ever met.” When I first heard this, I rolled my eyes. After all, Loeb, with his bullying of medical students and his imperious demeanor, embodied the exact sort of misguided physician authority that the bioethics movement had challenged.

But after reading my father’s journals, I understood what Whitlock had meant. And I also knew why Saul Farber, the longtime head of medicine at New York University, rarely bothered to convene the hospital ethics committee that he chaired in the 1980s. If you practically lived in the hospital, knew the medical literature up and down, and placed the patient on a pedestal, how could you not make the most ethical decisions? Who needed ethical principles and patient-empowerment tools when the right answers were sitting there right in front of the compassionate doctor’s nose? As my father wrote, becoming so immersed in his patients’ cases and constantly interacting with their families made him “a much more aware and caring physician.” Whether or not I could conceive of practicing medicine in this manner, it certainly was a compelling, and even heady, argument.

In addition to reflecting on my father’s behavior from the perspective of a physician, I also did so as a historian. Placing his actions in historical context had been relatively easy. He had trained as a doctor at a time when paternalism by all-knowing, benevolent physicians was the norm. But what about my history? Whereas I thoroughly understood why historians and bioethicists had called into question the excesses and mistakes of my father and his peers, I had not fully historicized my own experiences. My education and training occurred during the ascendancy of patient autonomy, and many of my mentors had played major roles in promoting this concept. My beliefs, like my dad’s, had been shaped by my history. From this perspective, it made perfect sense that I was now scrutinizing them.

My father’s efforts to challenge the changing ethical norms surrounding death and dying did not stop with his arthritis patient. As of the mid-1990s, he was the de facto physician for three elderly relatives: his mother, his mother-in-law, and his aunt. Knowledge of one’s patients’ lives conveyed authority to a doctor, and my father knew these women as well as anyone he had ever treated. So when they grew increasingly ill, he took charge in a way that was, once again, simultaneously disturbing and humane.

CHAPTER SEVEN

Family Practitioner

It was not inevitable that my father would play such a major role in the care of his family members—becoming not only cousin Phillip but also Dr. Phillip. His gradual decision to do so was a function of the worrisome trends he saw in medicine: increasing bureaucratization; distancing of doctor and patient; and overreliance on technology, especially at the end of life. My dad had played auxiliary roles in the care of my grandfather Mannie and my mother in the 1970s, but both of these bouts of illness had been self-limited. However, when my aging relatives began to develop degenerative diseases and terminal cancers, my father’s inclination to become involved grew—as with his uncle Mickey, who was dying as I began medical school.

Revisiting the stories of my father’s legendary patients, both those with AIDS or other diseases, had been tricky enough. But the stories of his involvement—or over-involvement—in the care of relatives I had known for my whole life made things even more complicated. With all of the admonitions against physicians caring for their family members, was he being a good doctor? I needed to explore this question as a physician, a historian-ethicist, and, finally, a son.

Mickey, a lawyer in Cleveland, was actually only nine years older than my father, almost more of an older brother to him than an uncle. He was just fifty-nine years old when he became ill in the spring of 1982. The diagnosis was grim: pancreatic cancer that had already spread to the liver. My father had gone looking for the results of the diagnostic ultrasound, and, I learned from his journals, when he found them, he reacted to the grim news by kicking a chair in dismay. I also learned that he had been the one to tell Mickey both his diagnosis and that he was unlikely to live more than one year. My reflexive reaction to this revelation was negative—Mickey’s doctor should have told him—but I knew this was only the beginning of my father’s increasingly active role in caring for sick family members.

Mickey’s decline was rapid. Within a few months, he was already in the terminal stages of the disease, in substantial pain and barely eating. When Mickey was admitted to the Mount Sinai Hospital in July 1982, my father visited him daily. As there were no issues of infection, he was not officially a part of the team, but he believed he could help make sure that Mickey was receiving adequate palliative care. But mostly, he came as a nephew.

Even though my father was accustomed to death and dying, it was what he called “a particularly difficult death.” Most difficult was “the slow and painful (physically and psychically) deterioration of someone I truly loved.” The fact that my father, such a capable doctor, was largely helpless in the face of the cancer only made things worse. “There were days when I was so depressed, I had to force myself to go to the hospital,” he later wrote. “Nothing has ever drained me so thoroughly.” Indeed, one day toward the very end, when Mickey was heavily sedated, my dad did not go visit. He felt less depressed but “terribly guilty.”

Mickey died at four o’clock on a Friday afternoon, when my father was still at the hospital and other family members could quickly be assembled. His uncle had been “considerate, cooperative and uncomplaining to the very end,” he remarked.

For my father, the death had not come soon enough. Mickey had suffered far too much. Ironically, shortly before Mickey died, we had decided to put down our beloved family dog Lily, who had experienced months of neurological degeneration leaving her nearly unable to walk. I had not yet left for medical school, and my father and I drove together to the veterinarian. I was far too upset to participate in the process so my dad, once again the family’s doctor, took over, holding Lily in his arms as she received the fatal injection. I wonder why, my father wrote, “we could relieve the suffering of our animals with the snap of our fingers, but could not offer similar surcease, in some fashion, for our human loved ones.” As my father became more and more engrossed in the topic of medical futility and more heavily involved in the deaths of my grandmothers, he actively sought to blur this line.

During the 1980s and 1990s, as my parents’ relatives and friends aged, I often received reports on their medical conditions. This may be normal, to some degree, although my sister and I always found it rather morbid. But when it came to my father, medical updates were his lingua franca. Not surprisingly, the pages of his journals were filled with the illnesses and recoveries of people I knew very well, those I did not remember, and those I had never met. Even though the diseases they developed were mostly random, it was almost as if their illnesses provided a type of road map for their lives and, by extension, my family’s. “It is difficult to know where to start,” opened one 1987 journal entry addressed to my sister and me, “but I’d best recount the illnesses first.” Reflecting on an elderly cousin in a nursing home with dementia, he recalled a photograph of a family gathering from the 1930s in which she looked “absolutely stunning.” Her current condition was “in stark contrast to the memories and pictures of the past.” About the death of a cousin’s wife in 1985, he wrote that it “marks the beginning of a new transition, as I and my cousins enter the last stages of our lives.” “The fragility of our life on this earth,” he wrote after the unexpected death of a friend, “is periodically pointed out to us in these little events that remind us of our mortality.” In 1992, he even composed a note detailing all of the cancers on his side of the family that had been diagnosed and treated at the Mount Sinai.

This tendency to obsess about the illnesses of others only accelerated when it came to discussions of my father’s peers. The diseases that doctors developed seemed to hold some special symbolic value for my dad and other physicians of his generation. At my father’s medical school reunions, it was routine for attendees to recount their medical ailments—in great detail—to their fellow classmates. One former classmate’s tracheotomy, he wrote after a reunion, “tells a tragic tale unfolding.” When I interviewed doctors for my books and asked them about their mentors, they often shook their heads sadly and told me what diseases had caused their deaths. It was almost as if these physicians, who had trained and practiced during medicine’s golden age, when anything seemed possible, had seen themselves and their colleagues as somehow invulnerable. But they also appreciated that disease, as shown most vividly in the case of AIDS or cancer, remained a formidable adversary that deserved respect. When the doctor being discussed had died from the exact condition that he or she had researched and treated, which seemed to happen more often than expected, it was especially moving.

One journal entry, for example, described the unfortunate diagnosis of brain cancer in Harold Neu, the infectious diseases specialist who had been one of my professors at Columbia and who lived one block away from me in suburban Westchester County. “Harold,” my father wrote, “is dying of an inoperable brain tumor but carrying on to the bitter end heroically.” Remarkably, Neu actually lived for several years with his cancer, enabling my father to visit him at his home when he came to New York to see my sister and me. “Had a shock when I read of the tragic passing of Bernard Fields,” read another journal entry, “the brilliant Harvard virologist at the age of 58 from pancreatic ca.”