The Good Doctor (22 page)

This did not mean, however, that my father was not up for the challenge of preserving some quality time for his AIDS patients. Using his tried-and-true techniques for engaging patients, such as spending extra time with them and explaining their illnesses, he got them to come to follow-up appointments and cooperate with in-hospital interventions, many of which were quite invasive. This success extended to several patients who had initially demonstrated “hostile, denial-based behavior.”

Reflecting on these cases, my father explained his strategy:

I held nothing back. I made no promises but I convinced these patients that the situation was far from hopeless these days, that I was very concerned that they understood the consequences of not adhering to treatment, and that I was willing to do everything I could, including working them into research protocols at the University, to treat them and follow them on a long-term basis, so long as they understood it was a two-way responsibility.

Building on the efforts of earlier breast-cancer activists, people with AIDS took patient autonomy to new heights in the 1980s, demanding entrance into clinical trials and often knowing the scientific literature better than their physicians. In some sense, they were the embodiment of the new bioethics. My father’s interactions with his AIDS patients did not necessarily preclude such an approach, as seen by his willingness to foster experimental treatments. But as I read my dad’s words, I felt they embodied the exact type of paternalism that was in the process of being overthrown. “Trapped in a desperate situation,” he wrote, AIDS patients needed a “firm but concerned individual to take charge of their health-related problems.”

As was the case with Laura and Susan, my father developed very intense relationships with several of his AIDS patients who he followed closely for months and, in a couple of fortunate cases, years. As they finally deteriorated and neared death, he faced similar issues about when to pull back—and about who should decide.

One of my father’s first patients with AIDS was Michael, who he later described as a “slim, handsome young man, with a graceful walk and beautiful skin.” Unfortunately, Michael was a textbook example of the devastating and widespread infections that AIDS patients could get. These included the fungal infection histoplasmosis, which caused him severe pneumonias and a collapsed lung; the parasitic infection toxoplasmosis, which caused tumors in his brain; and the viral infection cytomegalovirus, which caused an infection of the retina that eventually took Michael’s vision. Admitting that infectious diseases doctors “did not yet know how to treat the opportunistic infections of AIDS too well,” my father nevertheless successfully juggled antibiotics in a way that kept Michael out of the hospital for prolonged periods.

As would be expected, my dad once again went the extra distance, visiting Michael at his home every Sunday morning. It was not an easy thing to do. One Sunday, his patient was doing well enough that my father took a day off. “I am thankful I didn’t have to go today,” he wrote, “as it drains me to do so.” He benefited greatly from the help of his Mount Sinai colleagues, especially the nurses, who he later praised in his journals. The nursing staff, he wrote, “was remarkably compassionate and not frightened by his diagnosis.”

One month later, Michael was worse. Writing early one morning, my father announced that he “could no longer, in good conscience, recommend continuing treatment.” Poor Michael was paralyzed, blind, and demented. What was in store for him was a breathing tube in his windpipe, probable kidney failure, and a very toxic drug, amphotericin B—nicknamed “amphoterrible”—and then he would die anyway. “As physicians we are pledged to treat disease,” my father wrote, “but when we have to admit that we can’t win the struggle, why must we go through the motions nonetheless?” He planned, that very afternoon, to convince Michael’s supportive and loving parents “to withdraw all of our treatments and let him go.”

But Michael was young with a strong heart. He held on for another week or so, long enough for my parents to leave for their annual sojourn to France. The end went as smoothly as it could have; my father had left explicit instructions for the covering physicians. As in the case of Susan, he regretted not being in town for Michael’s death and funeral, but it was also a blessing for him to be away. Still, sitting on my uncle’s terrace, he rebuked himself for not having pressured Michael’s parents to cut back earlier, worrying that he had taken the easy way out.

In 1989, my dad saw another AIDS patient in consultation. Hospitalized in an intensive care unit on Cleveland’s west side, the man was running a very high fever for which no specific cause had been found. He already had an excellent infectious diseases consultant, but the family wanted a second opinion and reassurance that nothing was being overlooked in the case. Unable to free up time during the week, my father did the consultation on a Saturday morning. He allotted three hours to do “a proper job.” Believing that an underlying cancer was a “good bet,” he made a few recommendations to the doctors. Later that afternoon, he reflected on the experience. Whether the patient did or did not have an infection seemed almost irrelevant: “Here is a handsome young man,” he wrote, “twenty-four years of age, with tubes coming out of his chest, on a respirator, wasted and pale, anxious and frightened, who is going to be dead soon and there is no way I or anyone else is going to prevent that inevitability.” My father did not mention meeting the family, but I suspect that if he did, he spent as much time discussing their heartache as he did talking about the medical details he had been asked to elucidate.

Meanwhile, my father was taking care of another AIDS patient at the Mount Sinai. In contrast to the situation a couple of years earlier, infectious diseases specialists had learned how to better treat the opportunistic infections associated with AIDS. So in the case of a man I will call Larry, my dad was able to keep him alive for close to three years, even deluding himself at one point that his patient might “beat the odds.” Like many such patients, Larry eventually developed Kaposi’s sarcoma, a rare and incurable cancer found predominantly in the skin and other organs of immunocompromised patients.

At first, my father did not mention the Kaposi’s to Larry. It was his usual paternalism. As there was nothing to do right away, why upset his patient, who was maintaining a stable weight and even going to the gym? All along, without denying the reality of AIDS, my father had been “trying to paint as rosy a picture as I could.” But eventually he ordered skin and lymph node biopsies, which confirmed the diagnosis of Kaposi’s. When the results came back, he told Larry that his remaining time was limited. This led to the next decision point: Should my dad and his colleagues initiate chemotherapy, which was both highly toxic and unproven in the case of Kaposi’s, to give Larry some continued hope?

In this instance, Larry—in conjunction with his parents, whom my father got to know very well—made the call: they wanted to do everything. Chemotherapy was begun. Two subsequent pneumonias were successfully treated. But by this point, it was clear that the Kaposi’s had spread to Larry’s lungs. He was dying.

It was time, my father knew, for a frank talk. Although he would have been perfectly content to merely quietly withhold resuscitation and artificial ventilation from Larry when the time came, my father knew he was dealing with a patient and family who embodied the new spirit of autonomy. So he had the exact sort of end-of-life discussion that I taught medical students and residents at Columbia to have. If it was overwhelmingly likely that resuscitation would not work and Larry would die on a ventilator in an intensive care unit, would he still choose that option? Larry not only said yes but, according to my dad, was somewhat angry at the question and concerned that the doctors were giving up on him.

In an interesting twist of fate, my father was at the Mount Sinai one Saturday night when Larry, dramatically short of breath from yet another bout of pneumonia, arrived at the hospital. Attending physicians were covering the patients so the house staff could attend an annual party in their honor. The vast majority of those working were young, having recently completed residency themselves. But in arranging coverage for the event, the residents knew if they asked my fifty-eight-year-old father, he would probably say yes. And he did.

So when it was time to choose whether to intubate Larry or let him die, it was my father, respecting his patient’s wishes, who put him on a ventilator and sent him to the intensive care unit. “It was my worst nightmare, and it came true,” he later wrote. “It was something I didn’t want to do and something that could easily be argued was wrong to do (morally and ethically), but, nonetheless, I did it.”

Larry lived for six days. Unable to talk while on the ventilator, he eventually wrote my father a note saying he did not want CPR. So when Larry continued to deteriorate, he was allowed to die, comfortable and surrounded by his loved ones.

Despite his great opposition to futile treatment and the fact that he had known Larry would not make it, my father did not regret what had happened. Larry had staged a “magnificent last stand”: he “left no stone unturned and was determined to battle this illness with everything he could muster and his determination never faltered.” My father was also pleased that he was able to spend some quality time with Larry during his last days, less as his physician than as a “concerned friend.” Larry died in the manner that he had wished.

As I tried to process in my mind all of my dad’s efforts to not prolong—and occasionally to speed—the deaths of his end-stage patients and relatives, it was reassuring to see him pause and at least contemplate other options. Even the best physicians need to adapt to changing times. Larry’s parents were pleased with what had transpired. At the funeral, they asked my father to sit with them. “I was very touched,” he wrote. After the burial, my father and his secretary, Shirley, returned to the church for lunch, where they heard many stories about Larry and “got to know him much better.” Thus began “the age-old process of healing.” My father also noted that Larry’s parents occasionally “dropped by to say hello” to him for a couple of years after their son’s death, an important step in their mourning process with which he was pleased to assist.

My father’s most intense experience with an AIDS patient was a man I’ll call Jonathan, a patient who arrived at the Mount Sinai in late 1991 in terrible shape, having already had life-threatening pneumocystis pneumonia that had decimated both of his lungs. He had essentially no CD4 cells to fight infections. My father placed Jonathan on an extremely complicated fifteen- to twenty-pill regimen, including azidothymidine (AZT), then the only effective treatment for HIV infection, and an experimental drug to prevent a lung infection common in AIDS patients. Nevertheless, about a year into Jonathan’s treatment, he had developed an “unrelenting fever” that was possibly being caused by an undiagnosed cancer. “How hard should I push?” my dad asked himself.

With the encouragement of his patient and his patient’s parents, my father pushed hard. He and his Mount Sinai colleagues, including my uncle Allan, kept Jonathan alive and mostly out of the hospital for almost two and a half years. It was, my father wrote on the day of Jonathan’s death, “an odyssey . . . an incredible and epic struggle to plug the dike each time a leak appeared.” Among the conditions my dad treated were pancreatitis, peripheral neuropathy (arm and leg numbness), severe leukopenia (low white blood cell count), and anemia. As Michael had, Jonathan developed cytomegalovirus retinitis, cerebral toxoplasmosis, and several other infections. Although my father modestly wrote that he was mostly providing “friendship and cheerful support,” he managed these conditions with his usual legerdemain, using approved and unapproved medications and improvising when earlier strategies failed. Sensing that Jonathan was holding too many of his emotions inside, my father urged him, albeit without success, to see a psychologist. But in 1994, an enlarging spleen proved to be an insurmountable problem. My father had concluded that the undiagnosed cancer causing the elevated temperatures was likely a lymphoma that was growing in Jonathan’s spleen and elsewhere. Moreover, the growing spleen was causing substantial pain, something that the patient had somehow been spared until that point. There was also new fluid in Jonathan’s abdomen, a condition known as ascites, suggesting that the cancer might have also spread there.

It was another “How hard should I push?” moment. This time, my father held back. Chemotherapy, he believed, “would be too difficult for him to tolerate,” and “lymphomas, in this setting, are notoriously resistant anyway.” When he admitted Jonathan to the hospital for the last time, the main medication the patient received was intravenous morphine for his pain. Jonathan died several days later.

How did my dad reach this decision? One thing he did not do was explicitly ask his patient’s opinion. There was a different dynamic here than there had been with Larry. All along, my father and Jonathan had discussed his reaching a point when there were no more “corners to turn.” At such a time, my dad believed, he and Jonathan had a “tacit understanding” that they would “proceed accordingly.” My father had mentioned the possibility of a lymphoma in the past, and the fact that Jonathan remained passive and asked no questions further convinced him to take charge. If one strictly applied the teachings of bioethics and patient autonomy, as I did in the classroom and on the wards, Jonathan should have been formally apprised of the findings and asked about his choices. It would not have been particularly appropriate to ask Jonathan’s parents what they wanted because he still had decision-making capacity. But my father did inform them of what he had decided, and they “agreed.”

Phil Lerner was well aware that he was again in tricky territory. “I admit that this is medical paternalism at its very extreme,” he wrote. But prolonging Jonathan’s life, with a painful, cancerous spleen that could not be treated, made no sense. “I was determined not to let him suffer physical pain on top of the mental anguish he was experiencing,” my father later wrote. In addition, Jonathan’s parents “were spared a more prolonged period of watching their son die.” My dad also penned the following: “I was able to use my skills as a physician to ease his passage, not my skills as a specialist to prolong his suffering.” In another note, he went so far as to call what he had done “close to euthanasia,” although most bioethicists would not have used that word to describe what occurred. Jonathan had died not from the morphine, which was appropriately used to control his pain, but from his underlying disease.