The Good Doctor (21 page)

The actual details of Laura’s illness are less important than my father’s intense involvement in the case. He did literature searches in areas far afield from his own specialty, encountering new diseases that had not been identified when he was in medical school. He contacted pathologists and other physicians at the New England Medical Center, Memorial Sloan-Kettering Cancer Center, the Cleveland Clinic, and other hospitals, asking them to review Laura’s slides and her case to try to make a firm diagnosis. But most of all, he spent almost five years orchestrating Laura’s care, initiating experimental treatments, trying to alleviate her pain and suffering, and giving her full access to himself, day or night. “This young lady is a very special person,” he explained to the author of a book on the spleen to whom he wrote for advice, “and I would like to leave no stone unturned or potential lead unexplored in order to resolve her problem.”

Throughout the early years of Laura’s illness, her main complaint was headaches. Expert after expert could find neither a cause for her symptoms nor a particularly effective treatment. When one neurologist suggested that her headaches might be psychological in origin, given the stress of her condition, my father was uncomfortable. “[Laura] has been an exemplary patient,” he wrote, “who has never exaggerated or over-emphasized any of her very significant complaints, and I must therefore give her the benefit of the doubt in this search for the cause of her headaches.”

The inability to alleviate her headaches through traditional means led him to initiate a series of experimental therapies. What was most notable about this effort was that the proposed solutions were based on deduction, a series of hypotheses constructed by my father and other doctors grounded in the existing literature and their years of clinical experience and then applied to Laura’s specific case. For example, when Laura was found to have an increased blood volume and too much of a particular protein, she received plasmapheresis, a process in which her blood was removed, treated, and replaced. The headaches improved for a while.

Later, Laura began an immunosuppressive drug, Cytoxan, given to her in the hope that it would suppress her overactive immune system. In this instance, my father took the interesting step of crafting a consent form for Laura to sign. In the late 1970s, consent forms for medical procedures, which had previously been obtained only before operations and sounded more like indemnity forms designed to get hospitals off the hook for bad outcomes, were becoming more commonplace. As patients began playing more active roles in their care, it made sense to formally document their willingness to undergo specific treatments, particularly those that were unproven or risky. Using immunosuppression for Laura’s ill-defined condition was both. My dad knew that pure paternalism—in which the kind, all-knowing doctor kept the patient blissfully ignorant—was no longer acceptable.

The consent form underscored how intensely engaged my father was in Laura’s case. It was a two-page single-spaced document that explained what the doctors had concluded about her condition and the risks and benefits of trying immunosuppression. “There is no specific drug for turning off the overactivity of my lymphocytes and there is no consensus of opinion as to the best drug for this purpose,” the form read. “Dr. Lerner has selected Cytoxan based on its benefits in a totally unrelated but probably immunologic disorder called Wegener’s granulomatosis.” Both Laura and her husband signed the form.

Owing to the complicated nature of Laura’s illness, she saw numerous doctors. My father always sent them notes as to his whereabouts and how he could be reached to discuss her case. These included his office numbers, our home number, and our contact information when we were on vacation. He also arranged an elaborate coverage system for Laura when he was away, particularly when she was not doing well.

Unfortunately, roughly five years after her initial presentation, Laura developed leukemia. My father and his colleagues had always feared that her disease would eventually evolve into a malignancy, which Laura knew. At this point, standard chemotherapy was begun, but the prognosis was poor. Moreover, Laura was in a great deal of pain. My dad’s notes indicate that he himself administered narcotic injections to alleviate her symptoms.

Eventually, Laura required admission to the hospital. Her leukemia had not responded to the treatment, and her bone marrow was full of abnormal cells. At this point, she developed infiltrates on her chest X-ray that looked like some type of pneumonia. Because the problem was an infection, what to do was my father’s call. And he struggled mightily. Even if he could diagnose the infection and successfully treat it, all that was left was widespread cancer, which meant “severe, unrelenting, desperate bone pain, requiring morphine and stronger.” While sitting in the doctors’ lounge, he penned a note in one of his journals: “Pain or life? I really don’t know at this moment.”

My father also acknowledged some misgivings with his extreme involvement in Laura’s case. “I’m too close, too involved,” he wrote. “She’s like a relative, really. We’ve lived through this illness of hers together.”

Ultimately, my father held off on prescribing antibiotics. But it turned out not to matter. Shortly after he wrote his note, Laura rapidly deteriorated and died. Somewhat surprisingly, I did not find any subsequent journal entries summarizing his experiences with Laura other than one brief note indicating that he had attended her funeral.

In hindsight, thirty years later, what could I conclude from Laura’s case? For one thing, it was highly atypical. The inability of top doctors from across the country to reach a diagnosis was exceptional. In addition, no matter how devoted a doctor my father was, he could not have given this much time and energy to all of his cases. Finally, Laura was obviously a particularly motivated patient and an impressive person.

But what struck me most was my father’s total immersion in not only her disease but her quest to get well. That is, as long as Laura was game, he was willing to explore every single option and provide every last bit of support that he could. Moreover, he did so by blurring conventional understandings of medical specialties and medication options, crafting a unique plan of treatment culled from his vast clinical knowledge and that of his peers. It is impossible to know the exact impact of my father’s ministrations on Laura’s survival, but I would like to think she knew that she was receiving all the expertise and comfort that was humanly available to her.

As Laura was dying, my dad was involved in a similar case, that of an older woman with leukemia whom I will call Susan. As with Laura, the patient’s primary illness was not infectious in nature, but my father had been called in for periodic consults. Once the leukemia worsened and the infections became more frequent, he became engrossed. The dynamic with Susan differed from what he had with Laura. While Laura had been a trouper, Susan was frustrated and angry with her disease, which she survived for more than nine years. And my father became the receptacle for her vitriol. “She screams and carries on when the going gets tough,” he wrote, “knowing that I understand and will never reproach her, never abandon her,
whatever!
” He even encouraged her to use him in this manner, suspecting that once she was drained, she became more rational, placid, and cooperative regarding treatment decisions. My dad suspected that his medical expertise had prolonged her life but was even surer that he had helped her mental suffering by letting her know that he “was
always
available, even for the most trivial of problems or questions.” Susan was well aware that such a doctor-patient relationship was highly atypical. At one point, she remarked to my father that it was more like a parent-child interaction, even though she was considerably older than he was. Ever the paternalist, he did not seem to mind.

In Susan’s case, there was an additional tie between doctor and patient. Susan had been one of my sister Dana’s high-school teachers. In the summer of 1984, near the final stages of Susan’s illness, Dana and my mother visited Susan at her apartment. Subsequently, my father noted in a journal entry, Dana and Susan exchanged “touching” letters. This story proved that the apple does not fall far from the tree—my sister later became a psychotherapist—but it also reminded me of a gesture I had heard about that surely belonged to an earlier era: physicians who brought their families on rounds in the hospital to meet their favorite patients.

Today, these types of personal encounters happen very rarely. I recall being involved in a discussion once about whether it was appropriate for physicians to hang pictures of their families in their offices. Doing so, some thought, was not good for maintaining professional boundaries; patients might ask intrusive questions. Of course, with Susan, the fact that my sister was her former pupil made such a visit more logical. But even if this had not been the case, would it have been so bad? Susan had never married and had no children. For over nine years, she was in constant communication with my father, who probably would have discussed his family with her even if she had not known Dana. Introducing everybody might have made perfect sense. Susan, he wrote, “has crossed over—she is no longer just my patient.” As with Laura, she had become not only a friend but a dear friend.

What was also apparent in cases like Susan’s was just how much influence my father had at the end of such patients’ lives. Just as he had debated whether or not to treat Laura’s last infection, he anticipated a similar circumstance arising with Susan. “I truly find,” he wrote, “that I am literally in the position of determining when (and often how) a patient will die.”

My father was profoundly ambivalent about such a task. Although he had an excellent sense of what a particular antibiotic could achieve in a particular situation and was willing to make hard choices, it was burdensome to be the one so often making such life-and-death decisions. So when Susan died, during my parents’ annual vacation to France, my dad acknowledged that it may have been for the best that he was not at home. He did, however, regret missing the funeral.

As would be expected, my father’s most intense patient interactions during these years usually involved chronically ill patients who had experienced recurrent infections over a prolonged period. But, as he did in his early years as a consultant, he continued to step in not only as a specialist but also as a caring doctor sensing a patient in need. One day in 1989, for example, he sat down and held the hand of a fifty-six-year-old man with cancer to give him “the reassuring words he desperately needs to carry on.” My father explained that he “mustn’t give up hope yet,” as his upcoming chemotherapy was likely to help him. As someone who teaches the doctor-patient relationship, I wish my students could have been flies on the wall that day, watching a full professor and infectious diseases consultant taking time out of his busy day to offer a hand and an ear to a frightened cancer patient.

Not all of my father’s patients in this era had terminal illnesses, although it almost seems like it from reading his journals. Occasionally, he included entries on patients who had recovered after infections. As usual, his scientific knowledge coupled with his insights into his patients helped him display keen clinical judgment. One such patient was a young woman with Crohn’s disease, a type of chronic inflammation of the intestines. My dad had met her when an abscess in her pelvis spread to her brain, causing the formation of six smaller abscesses there, as well as the development of meningitis. She was extremely ill. The treatment for abscesses is to drain them and then give antibiotics, and that is what was done for the patient’s pelvic infection. But my father decided not to have the neurosurgeons drain the brain abscesses, instead treating them with medication alone.

The basis of his decision? Fortunately, my father kept in one of his folders the scientific literature he had consulted during this case. Most heavily highlighted was an article entitled “Successful Treatment of Multiple Brain Abscesses with Antibiotics Alone,” published in the
Reviews of Infectious Diseases
in 1985. There were only seven cases described in the article and they had been reviewed retrospectively, making it the exact sort of study that was falling out of favor in an era of sophisticated randomized controlled trials. But as an author of detailed clinical review articles, my father relied on them. The 1985 piece was apparently enough to convince him that it was reasonable to send the neurosurgeon away. My dad’s treatment proved correct. The patient received several weeks of antimicrobials in the hospital and then was discharged.

But even this relatively brief encounter caused a lasting bond between doctor and patient. Several months later, ominously, the fluid in the pelvis returned. The fear was that it was another abscess that might again spread elsewhere in the body. Another drainage procedure was planned using an ultrasound machine for guidance. My father had made time to go to the ultrasound suite, although he was not involved in doing the drainage. He wanted to watch the procedure for medical purposes and to provide emotional support to his patient. What happened next, my father wrote, was a “minor miracle”: the fluid collection seen earlier in the week had disappeared. “Ecstatic,” he kissed the patient on her forehead, hugged her mother, and told her story throughout the hospital all day.

As my dad dealt with these challenging cases, he also began to confront a new disease that was baffling and devastating. The AIDS epidemic that I first encountered in New York in the mid-1980s arrived in Cleveland at the end of the decade. As was true for his infectious diseases counterparts across the country, my father found that this awful disease gave him the opportunity to be a master physician, making difficult diagnoses as well as nuanced and elegant decisions about which antimicrobial agents to use. But even though these efforts resulted in some temporary successes, he knew that the vast majority of AIDS patients were fated to go downhill—and often very quickly. “I find these cases most painful,” he noted, “because it’s now an inevitable course we observe with only some little hope for slowing things down.” An untreatable infectious disease that killed previously healthy young people within weeks or months, my father wrote in 1991, was a “frightening throwback” to a time “when there was nothing to do but watch death come in the door and take over the remaining months.” How helpless and frustrated those doctors must have felt, he added, having only symptomatic treatments at their disposal. Not surprisingly, AIDS became a test case for my dad’s support of medical futility. “Personally,” he wrote, “I feel that heroic treatment of end-stage AIDS is morally wrong.”