The Good Doctor (26 page)

But there were two major problems. First, my father’s urgent pleas for the medical staff to aggressively administer morphine—which treats some aspects of congestive heart failure but can also cause patients to stop breathing—were met with resistance. Four years earlier, he had marched down the wards of this hospital doing whatever he wanted with impunity, even physically preventing CPR. But now, everything had changed. As he later wrote, “My problem with the staff . . . was getting enough morphine into Nana to ease her passing.” Her “quick final exit” became stalled “when the staff rebelled at my pushing the dose of morphine.” On at least one occasion, it seems, the nurses lowered the rate of the morphine drip as my father was sleeping in the room. What apparently did not occur—but probably would have at my hospital, the Columbia campus of New York–Presbyterian Hospital—was someone calling for an urgent ethics consult to mediate between my father’s demands and the reluctance of Jessie’s physicians and nurses to follow his wishes.

Second, Jessie was rallying. Once again, my father had to eat his words. “As it turns out, my accuracy at predicting Nana’s passing suffered yet another setback today,” he admitted, “as she suddenly began to breathe more normally than I would have thought possible.” This time, however, even Jessie had had enough. On the afternoon of February 6, 2000, five days after she entered the hospital, she finally stopped breathing.

The graveside funeral was a small one, mostly close relatives. Having spent most of her life elsewhere, Jessie had few friends in Cleveland. My father, my sister, and I spoke; our eulogies were celebrations of her life, replete with anecdotes about her strong opinions and loose tongue. But even more so than with Pearl, who had suffered a major, irreversible medical event, I remained uncomfortable with my father’s seemingly unilateral decision to withhold certain treatments and thus speed Jessie’s death. My sister, Dana, was actually surprised that Jessie had not lived at least until the birth of her first child, Gianna, in the summer of 2000. Despite her major infirmities, Jessie had been ardently awaiting this event. It seemed to me that there was a reasonable chance that with more aggressive treatment of the heart failure, Jessie might actually have reached this goal. And even though the pre-death planning had made it easier for me to attend the funeral and mourn with my family, it struck me as inappropriate to try to time someone’s death in this manner.

So how did my father, as revealed in his writings, build a case for what he had tried to accomplish? First, he emphasized Jessie’s miserable quality of life. Even if she still derived a degree of pleasure from eating and hearing about her loved ones, she was constantly unhappy, suffering from—and complaining about—one or more of her countless worsening maladies. My father seemed to have concluded that no one that miserable could genuinely want to undergo aggressive measures that would perpetuate such a state.

Second, my dad cited the toll Jessie’s poor health was taking on my mom, whose endurance, after years of immersion in Jessie’s care, was waning, raising the possibility that she might experience some type of physical or emotional breakdown. “It was time!” he wrote. “We could have kept her going for a few more days or perhaps even a couple of weeks, but the physical costs to her and the emotional cost to R would have been horrible! Absolutely, utterly HORRIBLE.” Plus, my parents’ slavish devotion to Jessie was, my father wrote, having a negative impact on their “relations with our kids and grandchildren.” That is, my parents’ choosing to stay in Cleveland meant fewer trips to New York and missing family events, which my sister, Dana, in particular, found objectionable. After Jessie died, my father wrote: “R and I can also now
reclaim
our lives together, to travel together, to plan excursions.”

As someone working in bioethics, with its emphasis on the rights of patients, I was alarmed to see my father invoke such considerations when making decisions about how long someone was entitled to live. I have little doubt that the fantasy ethics consultant that I imagined would have told my father to back off and rebuked him for conflating the goal of making Jessie comfortable as she died with that of trying to hasten her death. The bioethicist would have worked hard to elicit Jessie’s opinion as well as that of my mother, her nearest relative and primary caregiver. The Columbia ethics committee on which I sat for twenty years had at times encountered similar cases, in which paternalistic doctors—who were sure that they knew best—tried to exclude patients and family members from life-and-death decisions. My colleagues and I nearly always rejected such actions. What made my father’s behavior especially outrageous in this instance was his highly unorthodox decision to include my mother’s emotional well-being as part of his calculus when weighing Jessie’s various therapeutic options.

But there was another way to view this complicated dynamic between a dying woman and her loving family. If Jessie had briefly regained her eyesight, hearing, and other faculties and realized what her condition was doing to her beloved daughter, would she have actually agreed with my dad? It is impossible to know, but if, as in the aphorism that “a physician’s job is to relieve often and comfort always,” it might be argued that there was no one but my father who had the medical skills, emotional insight, and familial allegiance to make the choices in question. It might also be argued, more provocatively, that the full-on embrace of patient autonomy by my generation of bioethicists precluded us from even considering that my father’s highly paternalistic actions in Jessie’s—or Pearl’s—death might have been justified. A few weeks before Jessie died, my dad had made one of his countless visits to her apartment and found her to be “less communicative,” possibly indicative of even more deterioration. As he gave her his customary kiss good-bye on her forehead, he had made her a promise: she “would not suffer at all when the time came.” Armed with as much morphine as he could round up from the resistant nursing staff, he kept his word.

Six days after Jessie’s death, my father recorded his final thoughts on what had happened and had no regrets. Once again referencing the misuse of technology that he had seen at the end of life, he was pleased to have spared Jessie any “slippery slope madness.” He added that he and his brother had done the same for Pearl two years before. Then, vividly linking the filial and professional roles he had chosen in life, he concluded with a triumphant thrust: “So both mothers were spared suffering at the ends of their lives because their ‘sons’ were doctors who ‘acted.’” One might argue that what had transpired crossed a dangerous line, but this was surely an inspiring image of what a physician—in this case, a loving physician—could achieve.

Of course, my father well knew that this type of doctor-driven paternalism was not the ultimate answer to improving medical decision-making. So when it came to my dad’s managing the medical care of the third old lady, his aunt Gertie, she was a more active participant. To some degree, this choice reflected Gertie’s personality. In contrast to Jessie, Gertie had responded to her increasing infirmities by articulating limits to future possible treatments.

By the fall of 2000, Gertie was ninety-one years old and had moved into a nursing home. My father and Allan visited her regularly, often bringing her a corned-beef sandwich, which reminded her of the good old days. I saw Gertie for the last time that December. Although extremely frail, she was thrilled to see me and Cathy, as well as Ben and Nina, whom we brought along.

By February 2001, however, Gertie was “dwindling away,” eating and drinking less. My father wrote that she was “adamant” about not returning to the hospital when she worsened. Of course, he fully concurred. Then, on March 21, coincidentally the birthday of her brother Mickey, she died. “While waiting in the dining room for lunch,” my father movingly wrote, “my Aunt Gertie put her head down on the table and left us, as peacefully and calmly as we had hoped.” It was the sort of death that almost everyone—from paternalistic physicians like my dad to people trained in autonomy-based bioethics like myself—hoped for.

Still, it was tough for my father. “Gertie’s passing will be a blessing for her,” he wrote a month before her death, “but I’ll be saddened, as she is the last living link with my father’s family and that generation.”

My dad would remain immersed in the medical illnesses of other relatives and friends, but the end-of-life care of Pearl, Jessie, and Gertie represented what he might have termed one of his final official duties as both a son and a physician. Plus, my father’s world was shaking, both figuratively and literally. His beloved Mount Sinai Hospital was in turmoil, forcing him to take early retirement. And the disease that would come to dominate the rest of his life—Parkinson’s—was beginning to rear its head.

CHAPTER EIGHT

Growing Disillusionment

My father and I practiced medicine concurrently for a dozen years, from 1986 to 1998. Unfortunately, this period—especially the later years—was my father’s least happy time as a physician. Beset by demands from insurance companies, dealing with increasing amounts of paperwork and a hospital that was suffering financially, he realized that the career he had fashioned as a consultant, teacher, and researcher was becoming much less viable. Even worse, he could not hide his frustration and contempt for what was happening, which led him to spoil his thirty-fifth medical school reunion with a rant.

I, on the other hand, was just beginning my career in the late 1980s and early 1990s, first as a house officer and then as an assistant professor. I experienced many of the same frustrations but, perhaps due to lower expectations and the enthusiasm of youth, did not wear my annoyance on my sleeve. Having so admired my father as a physician, I found it painful to see him so unhappy and, frankly, to listen to his tirades. His journals, not surprisingly, chronicle the many ways in which medicine—which had once brought him such joy—now did the opposite. Although he tried to channel his energies into specific projects, most notably what he called a manifesto on the inappropriate use of antibiotics, most of them never came to fruition.

Meanwhile, drawing on my training in history and bioethics and on what I had learned from my father during the prime of his career, I tried to practice a patient-centered form of medicine that fit within the new realities of managed care, time constraints, and the need to see medicine as a part of one’s larger life—something my father was never really able to do.

To my dad’s credit, at some point he realized that he was becoming too negative. While staying with my uncle Mark in the summer of 1987 and during several subsequent visits to France, he made a point of “smelling the roses,” acknowledging moments that he called the “perfect instants of our lives.” On at least one occasion, he reported having experienced “total and entire relaxation.” His parents had been born into poverty in Poland, and he into a working-class home in East Cleveland, yet here he was, lounging on the terrace of a villa in the south of France. My dad was a respected physician married to a wonderful woman who was his “compass,” and he was the father of two successful children. The three old ladies were doing well at that time, and Jessie, also born in Poland, was healthy enough to come to France each summer. “These are the ‘good old days’ I’ll fondly remember tomorrow,” he wrote in 1989, “and things will never be less complicated than they are just now.”

Still, he admitted, he was too often guilty of “letting the little things, the glitches and annoyances” become the “dominant facts” of his life. That my father kept journals was probably a blessing in this regard. Amid the chronicling of his relatives’ medical problems and the milestones of his children and grandchildren are repetitive, angry entries about the decline of both his revered Mount Sinai Hospital and the medical system in general. My mother, my sister, and I got earfuls of this, but his journals got even more.

Just what was bothering my father so much? Some of it was his frustration about being asked to juggle antibiotics in patients who deserved to be left alone, but there were deeper problems. One of the first about which he wrote with regularity was an issue within the medical profession itself. Having trained to be a physician who compulsively checked every laboratory value and physical finding of his patients, my dad was growing irritated at specialists and subspecialists who saw their role as diagnosing and fixing very narrow problems—such as clogged arteries or thinning bones—without, apparently, any interest in the overall medical and emotional lives of the patients who had these conditions. “I have become increasingly dismayed,” he wrote in 1984, “by the frustrations of trying to practice and promote the
proper
execution of medicine, my chosen life’s endeavor.”

In one journal entry, my father divided what he perceived as unsatisfactory physicians into three groups. First were the automatons, who were not necessarily bad doctors but who lacked passion for their work. Second were the opportunists, who expected and demanded enormous financial rewards for their efforts. The third group—by far the worst—were the “outright charlatans, a mixture of idiots, thieves, incompetents and general misfits whom our system fails to screen out of the educational process and our profession hasn’t the guts to eliminate from their protected position in the establishment.”

My father directly pointed fingers: certain orthopedists, gynecologists, and urologists were among the worst offenders. He reported seeing the same mistakes over and over “because no one is paying attention to the patient as a total organism, rather than a bone or a joint or a uterus or a kidney or a bladder.” By no means did he mean to indict all practitioners in these fields. The guilty doctors were “fortunately a minority.” But when physicians did not care about basic concepts they had learned about in medical school—fluid balance, the body’s healing processes, and the balance between disease-causing bacteria and normal flora—they became “tunnel-vision technicians.” In April 1984, my father wrote a letter full of these types of complaints to his dear friend James J. Rahal, a New York infectious diseases specialist who had also trained with Louis Weinstein. “I’m tired of these young whipper-snappers who know only how to perform ‘oscopies’ and other procedures, but haven’t the slightest idea of what practicing medicine really means,” he said. “I’m tired of the rude and stupid physicians who don’t understand the basic courtesy involved in a consultation, who think nothing of frantically asking you to drop everything to bail them out and then never get back to you after you do so.” In a reply, Rahal supportively termed the missive the “lament of a committed physician,” but he seemed to be taken aback at my father’s anger.