The Good Doctor (31 page)

My first image of my father sitting in the common room at the nursing home amid the other severely ill residents will always be lodged in my mind. He was in a wheelchair, sleeping, with his head hanging down. Many of the others looked the same. I vividly remembered similar assemblages of the infirm from my days volunteering at the Montefiore Home as a teenager. Then, my father was the supremely confident and able medical director, rushing around the building, caring for and reassuring such patients. Now he was one of them.

In some ways, Menorah Park staff members went out of their way to acknowledge who he was. They always called him Dr. Lerner and, at times, alluded to his expertise surrounding medical issues that arose at the nursing home. But in other ways, my mother felt, his status as a physician—a former leading light in the community—was insufficiently recognized. For example, it was hard to reach the nursing-home physician with questions. As there was not a neurologist on the staff, my mother had to track down the home’s psychiatrist when she had questions about my father’s Parkinson’s medications. As a result, I found myself the frequent recipient of phone calls from my mom, asking for my opinion not only about his pills but also about his rashes, a new cough, or his bowels. Having now been drawn into the care of a sick relative myself, I found it harder to criticize my father for doing so.

My mother’s frustrations extended beyond what went on at Menorah Park. She felt that my father’s private neurologist was insufficiently attentive to him; he had told her that he could make recommendations only if my father could somehow get to his office. She also felt aggrieved at some of her own doctors. She was experiencing health problems herself and believed that, as in the old days, a physician’s wife deserved a little extra attention. On a few occasions, staff members, rather than the doctors, called to give her the results of tests. Although I was able to help her interpret this information, she was offended that the doctors themselves had not phoned. After all of that professional courtesy my father had provided over the years, it was the least that these physicians could do. But as my dad knew better than anyone, that old-school type of medical practice was rapidly disappearing.

I tried to visit Cleveland as much as possible, but my family and job were in New York. Even though she was no longer his primary caretaker, my mother became a fixture in the nursing home, watching out for not only my father but the other residents. She knew my father had a gradually debilitating disease but remained engrossed in his day-to-day symptoms. During a particularly good stretch, she might call to say that my father was getting better. On a bad day, she would announce that he had taken a major turn for the worse.

As a doctor, I knew these were the ups and downs of Parkinson’s, and, from five hundred miles away, I gently reminded her of this fact. She knew it too, of course, but it was understandably hard for her not to read too much into small things. Like other caring spouses, my mother fixated on minor issues in an attempt to retain some degree of control over such a disturbing situation. On several occasions, she asked my opinion about obviously nonsensical things that my father had said about his medical condition. When I asked her why she gave them any credence, she told me that she was so accustomed to my father being an authority on the family’s health that it was hard for her not to still believe him. Fortunately, my uncle Allan was also a frequent presence at Menorah Park, keeping a close eye on his brother and the various medical issues that emerged.

One additional task remained. Now that my dad was in a nursing home, my mom and I needed to know what to do when his medical condition deteriorated. Would he go to a hospital? And, if he did, were there limits on what we would ask the doctors to do? I knew my father’s mental condition was not great, but he did have moments of lucidity. It seemed logical to ask him what he would or would not want.

I knew what answer I wanted to hear, especially after reading my father’s journals. I knew that he had devoted much of the later years of his career fiercely defending the right of people in situations like his to die with dignity, avoiding endless courses of antibiotics and other heroic technological efforts. I also knew that he had gone farther in certain cases, even speeding the dying process.

We had discussed this issue at length as recently as 2005, when the tragic Terri Schiavo case was finally coming to a close. Schiavo was a young woman who had suffered a cardiac arrest and massive brain damage in 1990, likely due to complications of bulimia. Schiavo’s parents objected when, in 1998, her husband and legal guardian, Michael Schiavo, asked that doctors remove Terri’s feeding tube and let her die. Robert and Mary Schindler believed that their daughter responded to them and might still improve, despite the fact that a CT scan of Terri’s head showed minimal remaining brain tissue. After dozens of court hearings, Schiavo died on March 31, 2005, after her tube was finally permanently removed. My father, not surprisingly, had railed against the Schindlers and the pro-life activists and politicians who had rallied to their cause. Terri Schiavo’s cardiac arrest had surely been a tragedy, but what her loved ones had done to her for fifteen years was, in his view, far more tragic.

Another piece of information was a document that I had found among my father’s writings. Penned in February 2007, it was entitled “Epitaph,” although he had had trouble spelling the word. He was, he wrote, in the “terminal phase of Parkinson’s disease,” losing the ability to both ambulate and control his bodily functions. His memory was “rapidly failing” him. After thanking my mother, his children, his grandchildren, his brother, his cousins, and his colleagues for all the blessings he had received throughout his life, he wrote that he was “taking steps to ease my passage.” This was, of course, incredibly dangerous territory to begin with, and his growing inability to record coherent thoughts made it hard to understand what he wanted.

One thing was for sure. “Ronnie,” he wrote, “doesn’t deserve to struggle with me anymore.” But how she would avoid this was not clear. At one point, for example, he wrote that he foresaw a “home hospice situation.” But he also alluded to some type of suicide or euthanasia, noting that some in his situation “have taken drugs.”

With all that I had learned, I wanted my father to passionately declare that his current condition—largely immobile, usually lethargic, and often confused—was unsatisfactory. But when I asked whether he would be willing to go to the hospital if he got sick, he said yes. And he even said that he would be willing to go on a ventilator.

“Sometimes they can really help,” he told me, much to my disappointment. “It depends on what the infection is.” He did say, in response to my prompts, that he would not want heroic treatment if it was clear that it would not work.

Then I asked if my dad if he was content with his current life, living in a nursing home with physical and mental limitations.

The man who had dreaded ever winding up like this answered, “Yes.”

In retrospect, I might have raised these questions earlier in my dad’s illness, when he was more mentally sharp, but, like my father and mother, I was to some degree in denial. So I had to use the information that I had.

What I had learned was especially compelling for two reasons. First, there is a common conundrum in bioethics in which patients who have fiercely favored a particular course of action over a prolonged period suddenly change their minds—often at a time of crisis. Just what were doctors supposed to do in this type of scenario? What were such patients’ “true” wishes? What was my father’s true wish? Even though I had hoped his beliefs would remain consistent, I knew that certain ethicists had convincingly argued that precommitment to a certain end-of-life strategy should not be inviolate. When experiencing something they had never previously encountered, people had the right to change their minds. So did my dad? My father’s about-face was worrisome for another reason: it made me question the validity of his own assumptions about the inappropriateness of aggressive treatment for his severely ill patients and relatives.

Second, as I asked my father these questions, trying to figure out the right thing to do, I was—reluctantly, to be sure—becoming his doctor. Although I was glad to give friends and family members occasional medical advice and steer them toward my most trusted colleagues, I had carefully avoided replicating my father’s decision to become actively involved in the care of relatives. But here I had no choice. Certainly no one at the nursing home was stepping up to the plate, aside from a nurse who had informed my mother about a hospice program. Now, along with my mom and sister, I was going to have to decide my father’s medical fate. I suspected that he had felt a similar sense of obligation when confronted with relatives whose health was deteriorating.

Having been thrust into this role, and despite the valid objections to precommitment, I felt quite certain about what course of action was best. I believed to some degree that my father was happier in his current state than he would have anticipated. He was not in pain and still ate with gusto. He knew who we were and, at times, could engage in coherent discussions. But he spent most of the time either sleeping or drowsy, lacking the stamina to keep up a conversation. His quality of life was severely diminished. Ultimately, I concluded that it was impossible to advocate such specific choices so fervently in one’s lifetime without them being a part of one’s permanent makeup—even if they could no longer be articulated. My mother, sister, and uncle concurred with this assessment.

One of the many famous quotations that my father interspersed among his journal entries was one by the eighteenth-century English physician and intellectual Thomas Fuller about what constituted a good doctor. “When he can keep life no longer in,” Fuller wrote, “he makes a fair and easy passage for it to go out.”

I would be that good doctor. We put my father into Menorah Park’s hospice program. Antibiotic pills at the nursing home were okay, but there would be no trips to the hospital, let alone ventilators or intensive care units, even if there was a hope that he could recover from a particular illness.

In October 2012, we all went to Cleveland to celebrate my father’s eightieth birthday. I could not help but contrast this event with his own mother’s eightieth birthday, twenty-three years before. On that day, dozens of relatives had attended the festivities at a country club. Pearl was in great physical and mental shape and had a wonderful time.

My father, in contrast, was going downhill. He could not really engage in meaningful discussions anymore. There were glimmers of his old self, as when he shooed me away, hugged my seventeen-year-old daughter, Nina, and tried to share with her some grandfatherly wisdom.

A couple of weeks later, I got a text from my sister.
Mom says Dad is not doing well
, it said.

At that moment, I was actually at a rescue shelter in the Bronx. It was a few days after Hurricane Sandy had ravaged the New York area, during the time that Bellevue was closed. I was tending to patients from a residential home who had been displaced by the storm.

I stepped outside and called the nursing home. The nurse told me that Allan was at the bedside.

“It’s not good,” he told me. Apparently there was a virus going around the nursing home. My father must have caught it and had possibly developed pneumonia. When his breathing became labored, the hospice team had given him morphine for comfort.

“He’s not responsive,” my uncle said. Six hours later, my father died.

The doctor in me knew this was for the best. His day-to-day existence had been terrible. We had all just visited and had the chance to say good-bye with many kisses, hugs, and loving words.

Yet I was not just a doctor but also a doctor’s son. I thought to myself:
How could my father be felled by a nosocomial infection, the type of thing he routinely used to swat away as an infectious diseases expert?
It was the exact sort of story that my father and his colleagues had shared at medical meetings, recounting the sad, and at times ironic, fates of their brethren who had died of the exact diseases they had once conquered.

Finally, I was not just a doctor’s son, but a son. As long as he was still capable of acts of warmth, especially to my children, how could we let him go? Despite her overall sadness and frustration with the situation, my mother had told me of occasional moments when my father was like his old self. When my uncle said my father was unresponsive, part of me had wanted to fly immediately to Cleveland and try to save him.

But when all was said and done, I thought of my father’s patient Susan, who he somehow kept alive for years despite her leukemia and severe infections. He was upset at having been in France when she died but realized it may have been for the best. He was too involved in too many ways. Maybe the same was true for me.

We all flew into Cleveland, my family and my sister’s family. There was no funeral and no shivah. He had told me dozens of times that these religious rituals were meaningless for him, and we honored his wishes. We instead held a non-shivah shivah at Allan’s house, enabling family, friends, and my dad’s colleagues to pay their respects. So many people present had relied on medical advice from my father over the years that it seemed illogical that they were still alive and he was not. Fortunately, I got to hear lots of wonderful stories about my dad as both a physician and a man. One relative gently grabbed me by the shoulders and insisted that I understand how he left no stone unturned in his devotion to her dying husband. “He practically lived at our house at the end,” she told me.

But in a world dominated by the Internet, it is fitting that perhaps the best tribute could be found online, at a legacy site on which mourners can post comments. My favorite was from someone I had never met—a man in Texas—who wrote: “I was one of Dr. Lerner’s last patients before he retired. His efforts, skill, devotion and tenacity are the reason that I am still alive today. Dr. Lerner never gave up on me and he saved my life. Not a day goes by that I do not think of him at some point.”