The Good Doctor (25 page)

I recall being somewhat surprised upon learning of this arrangement. After all, my father was an infectious diseases specialist. Although he was also an internist, it was unlikely that he kept up with recent clinical trials relating to hypertension and heart disease. In contrast, I, as a general internist, dealt with hypertensive patients on a routine basis. On a couple of occasions, I inquired about Pearl’s blood pressure and her medications. I recall thinking that if she were my patient, I would have tried for tighter control. I even made a few suggestions about how to treat her, thereby falling into the trap of getting involved in the care of my relatives. But I lived in New York and saw Pearl only on occasion. Plus, she had a history of fainting spells, a possible reason not to lower the blood pressure too much. So I decided to let the subject drop.

Pearl’s demise began with a small stroke in mid-December 1997. She was admitted not to the Mount Sinai but to University Hospital, the main hospital of Case Western Reserve. That she had experienced a stroke was particularly relevant, as it was the medical event that she most dreaded. In addition to other friends and family, her sister Shirley had suffered strokes and been incapacitated and miserable for years as a result. Pearl’s worst fear, my father wrote, “was to have a stroke and have to live a limited existence, dependent on others for her basic necessities.”

It was not clear at first how Pearl would fare. After all, the damage from some strokes is reversible, and this one appeared mild. My father and Allan were near constant presences in the hospital. My dad successfully fed her a meal of juice and Jell-O on December 20, 1997. But Pearl seemed to know that this was the end, talking quietly about Shirley and her husband, Meyer, who had died over twenty years before. And she was right. Shortly after she ate, she suffered a massive bleed in her brain, leaving her comatose. There was no chance of meaningful recovery.

This did not mean that death was imminent. But my father—with his passionate beliefs about limiting suffering at the end of life—thought it should be. Prior to the era of patient autonomy and increased scrutiny of medicine by bioethicists and lawyers, it had been common for physicians to turn up the morphine on patients with massive brain bleeds. I don’t remember the exact sequence of events after the bleed nor what my father said at the time, but I had the sense that he had somehow sped things up. He later wrote, somewhat vaguely, that he had been able “to tend to her in her final hours” and “to help her achieve the peaceful end she sought.”

Regardless of his involvement, my dad was thrilled—in his own words, “grateful and euphoric”—that Pearl’s death at the age of eighty-eight was sudden and without suffering: “I was
happy
Pearl got her wish.” He even admitted that he initially had trouble mourning her death because it had gone so well. At the funeral, he had cried only briefly, after seeing some friends from the old Eddy Road neighborhood who reminded him of Pearl “in her prime, in her top form and vibrant, happy, enthusiastic.”

In later years, I asked him point-blank what had happened in Pearl’s hospital room. He did not remember the specific details, or said he did not, but he admitted that he had guaranteed that she did not linger, making sure that she received enough aggressive medication—presumably morphine—to stop her breathing. This time, it sounded more like euthanasia.

As I had when reading about other end-of-life decisions my father had made, I felt queasy. Do people in comas suffer? In some cases, it appears that they do not. And even if Pearl was suffering, was she suffering enough to warrant such a brazen act as my father—or, at his behest, the hospital staff—may have committed? It seemed hard to justify.

Knowing Pearl as well as I did, I was aware that it was absolutely true that she valued her independence over almost anything. I did not doubt that she was petrified to spend the end of her life either partially paralyzed or bedridden. But when my father wrote that he was glad that Pearl got her wish, it was hard not to think that it was as much his wish as hers. And I was uncomfortable with the fact that he seemed more fixated on
how
she had died rather than
that
she had died. Yes, he had used his skills and power as a physician to help effect a scenario that he, as Pearl’s son, believed to be right. I have also recoiled at the prolonged deaths in intensive care units and hospital wards, and I entirely understood his position. The degree to which he had orchestrated the outcome, however, seemed wrong. After all, the cases in which physicians—well meaning or not—had overstepped their bounds were the exact ones that had fostered the growth of bioethics and the adoption of new laws and norms surrounding death and dying.

But I had to ask myself: Could a case be made? My father could argue that he knew the dying arthritis patient as well as anyone and had covered her body with his own when others had been reluctant or afraid to do the right thing. In the case of my grandmother, there was absolutely no doubt that he and his brother knew her best. With death approaching and Pearl experiencing the exact scenario she had so feared, why not move things along? Indeed, once the family members of dying patients are told by doctors that the end is imminent, it is not uncommon for them to become impatient if their loved ones linger. Such sentiments should always give us pause. After all, some relatives’ impatience may be due to something other than the desire to end the patient’s suffering; for example, they may want to ease their own burdens or obtain inheritances. But if such issues are not in play, is the desire to speed death unreasonable? Hadn’t my dad simply taken advantage of his being a physician to accomplish what other loving and grieving children wished they could do?

More subtly, beyond the obligation of not letting his mother linger with an incapacitating stroke, my father was once again motivated by his characteristic need to pay back his relatives for the sacrifices they had made in order for him to become a doctor. If he had the ability to use his medical knowledge to ease his mother’s passing, how could he not do it? It was actually his brother, Allan, who conveyed this idea in print, placing an entry into one of my father’s journals as Pearl was dying. In it, Allan juxtaposed the nature of her death with what she had meant to him, my father, and the entire family: “My mother is dying her way. She came from a spirit that saved us from the Holocaust by getting us to this country.” That is, honoring how Pearl wanted to die was a way of validating the courageous choices she had made during her life.

These same emotions came through in the eulogies that my father and uncle gave for Pearl. She was buried on Cleveland’s west side, next to Meyer, near his parents, and surrounded by members of the Jewish social club that had provided cohesion and friendship during her early years in Cleveland. My father was especially pleased that she had an Orthodox funeral and was buried in a traditional shroud, which he knew she would have liked. When religion provided linkages with his family’s past, my dad could tolerate, even celebrate, it.

After Pearl’s death, my father’s and mother’s attention naturally shifted back to Jessie. If Pearl had represented a success of modern medicine, living almost ninety mostly healthy years, Jessie embodied the often deleterious consequences of living a long life. By this point, her myriad ailments made it almost impossible for her to leave home, where she now had twenty-four-hour supervision. Either the live-in aide or my mom, who spent enormous amounts of time at Jessie’s apartment, had to take her to the bathroom, dress her, and make sure that she ate.

In fact, just before Pearl’s death, it had again seemed as if Jessie was about to die. This time, she had developed pneumonia. As had been the case with Pearl, my father had gradually taken over Jessie’s medical care from her presumably competent doctors, obviating difficult visits to their offices but raising the same complicated ethical issues. On December 15, 1997, he wrote that “today is probably going to be Jessie’s last day.” Two days before she had become “confused, upset and terribly agitated.” Then she had developed enormous fatigue, sleeping most of the time. My parents, on vigil at Jessie’s apartment, had gotten her to eat and drink only a little bit. “I anticipate that without any further improvement in her oral intake,” my father wrote in a clinical tone, “that this story is about to conclude.”

In anticipation of Jessie’s death, he had notified both me and my sister. He also went to the hospital to obtain a death certificate form as well as medication to treat her agitation if necessary. This last maneuver was another reminder of a bygone era. The idea of a physician taking controlled substances from a hospital to use elsewhere would be ludicrous today.

But my father had been wrong. Providing yet another cautionary tale about the folly of caring for one’s family members, Jessie once again foiled his considerable prognostic skills. She had woken up the next morning, announced that she was hungry, and eaten a huge breakfast. Within a few days, she was back close to her baseline. She had a staggering number of problems but was not going anywhere. I vividly remember marveling at this turn of events at the time and speaking with her on the phone after her recovery. Was Nana indestructible?

Over the next couple of years, I would see Jessie roughly every four to six months, when I went to Cleveland by myself or with Cathy, Ben, and Nina. The kids, especially Ben, were quite upset at her deterioration. As Jessie could barely see or hear them, she relied on her tactile sense, loving to sit next to them and stroke their hair. Even more remarkable were our phone calls, which required me to practically scream to be heard. Here was a ninety-year-old woman, nearly deaf, blind, weary, and fragile, but she remained utterly sharp, keeping track of the family’s doings and, to a lesser extent, world events. My parents briefly contemplated not telling her that Pearl had died, but they realized that she would probably figure it out anyway. Jessie just soldiered on and on.

To what degree was she suffering? At one point, my father termed her life a “most unhappy existence.” It was certainly one that he himself did not see as worth living. Yet despite being “emotionally quite unhappy” at all of her medical woes, Jessie never indicated in any manner that she was ready to give up or that she wanted to die. Her tenacity, we suspected, stemmed in large part from her continued desire to try, from her apartment couch, to provide profuse advice to the rest of us about how to live our lives. Her involvement was excessive, to be sure, but it was also inspiring that she still cared so very much.

My father was extremely concerned with the effect that Jessie’s ongoing infirmity was having on my mother, who spent large amounts of time at the apartment and took each new medical or psychological downturn very hard. “Ronnie is at the end of her patience, emotionally and even physically, and I fear for her well-being during this continuing ordeal,” he remarked in 1996. “She is her nurse and her only link with the outside world.” Even after they hired a full-time aide to help Jessie, my parents were reluctant to spend much time away. Although my sister and I insisted that they go on a special vacation for their fortieth wedding anniversary, in November 1998, they just stayed in Cleveland. In his journal entry for that day, my father wrote that “Jessie’s condition throttles Ronnie’s and my lives, as we cannot shed the responsibility for her care and comfort.” This was their choice, but they were not without some regret. “We must make a greater effort to try and live a more normal life divorced as much as possible from the inevitable deterioration of our elderly parents and aunt,” my dad wrote in 1996. But they never did.

As my father contemplated what would eventually happen to Jessie, his touchstone was again the 1996 case of the patient with severe arthritis and vascular disease. There were, of course, substantial differences—most notably, that Jessie was not yet end stage and was not hospitalized. He noted that were Jessie to be hospitalized, she would surely have a do-not-resuscitate order, unlike the earlier patient. But he wanted to keep her out of the hospital entirely. “The question really comes down to whether or not I can orchestrate and carry out her dying at home,” my dad wrote. “Once she goes into the hospital, I lose my ability to impact the
total
decision-making process.”

Jessie made it until February 2000, more than two years after Pearl’s death. At that point, she was ninety-three years old. What happened first was worsening shortness of breath and agitation. My father, sticking to his plan, initially tried to manage her symptoms in the apartment by giving her sedatives. Fortunately, he quickly realized that he was in over his head. By this point, my father had left the Mount Sinai and had no admitting privileges, even if he had wanted to be on record as his mother-in-law’s doctor. He called Jessie’s old internist, who agreed to admit her, although this doctor was going on vacation the next day.

Once the admission testing was done, her medical condition became clearer. Apparently she had suffered one or more heart attacks and had gone into congestive heart failure. The fluid in her lungs was making her short of breath.

I remember having a series of uncomfortable phone calls with my father at this point. Again, he seemed to be too involved, running the case instead of relying on the judgment of Jessie’s actual doctors. But I, too, was drawn to the medical details. From where I stood, it seemed as if Jessie had a treatable condition. Mind you, I did not mean anything invasive. But I speculated that giving her diuretics and other pills to treat her heart failure would be reasonable and might be a way for her to go back home.

My father, however, was pushing hard in the other direction, desperately seeking to avoid “meaningless treatments that wouldn’t change the ultimate outcome.” He saw her deteriorating heart function as the final straw, thinking that it should be viewed not as reversible but as a mechanism for easing Jessie into death. This thinking reminded me of the designation of pneumonia as the old man’s friend in the days before antibiotics. Everyone had to die of something, both then and now, and, in this case, my dad thought Jessie’s heart should be the cause. I knew this decision was based on his thoughtful assessment of both Jessie’s medical condition and its effects on those around her, although I did not understand it exactly until I later read his journal entries. Plus, I was five hundred miles away and not involved in my grandmother’s day-to-day care. I essentially deferred to my father, although I remained upset at the situation. Indeed, my dad was so intent on orchestrating Jessie’s death that he had booked a funeral home for later in the week and was urging my sister, me, and other relatives to clear our calendars.