The Good Doctor (18 page)

I knew from my own research that only a small minority of doctors from this era had raised objections or declined to participate in research on captive populations. For instance, two of them had refused to inject cancer cells into the elderly patients at Brooklyn’s Jewish Chronic Disease Hospital and had even made their concerns known to the press. But my father had gone along. My initial outrage gradually turned to mild disappointment. I reasoned that my dad was not a very political person and had surely been focused on doing good science. Plus, compared to some of the other egregious ethical violations taking place, injection of probably harmless antimicrobials was less terrible. And other revered physicians had participated in similar experiments. Paul Beeson, for example, had performed X-rays and invasive catheterizations on patients without obtaining consent.

Yet one of the reasons my father and his peers participated in such research raised another ethical concern. Funding for much of the work done in Weinstein’s laboratory came from the drug giant Eli Lilly, based in Indianapolis, Indiana. Lilly, a major manufacturer of antibiotics, was glad to fund research into the efficacy of their drugs performed by well-known and highly respected investigators like Louis Weinstein.

My father maintained close ties with Lilly once he moved to Cleveland. He often brought home interesting gifts that he received from Lilly’s and other drug companies’ representatives—often attractive women—given to him in exchange for his listening to information about their newest antibiotics. Although my dad prided himself on not prescribing new, expensive medications when earlier versions would do the trick, bioethicists would eventually conclude that such interactions represented a conflict of interest. More disturbing was the fact that Lilly had provided him with somewhere between five thousand and ten thousand dollars for a 1983 trip to China in exchange for his mentioning Lilly antibiotics in all his lectures. This type of arrangement would come under exceedingly close scrutiny by the late 1990s, especially when data revealed that such arrangements influenced doctors’ prescribing practices even when they claimed they remained objective.

Speaking of conflict of interest, I confronted another questionable activity of my father’s: his decision to serve as the actual or de facto doctor for a number of our family members. This issue was not a traditional topic in bioethics, but it raised important questions about the proper boundaries of the doctor-patient relationship. The American Medical Association was concerned enough to write in its 1993 Medical Code of Ethics that “physicians generally should not treat themselves or members of their immediate families.” Among the objections raised were that doctors who cared for relatives could not be objective and that such patients would feel too intimidated to ever reject the advice of their in-family physician. “Because a clinical encounter with a family member is not a typical doctor-patient relationship,” a 1999 ethics case study advised, “physicians caring for family members may tend to ignore standard guidelines, such as respecting a patient’s right to decide about treatment, informing the patient about the risks and benefits of treatment and plausible alternatives, telling patients the truth and respecting confidentiality.”

At some point, I asked my father about the illness and death of my maternal grandfather, Mannie, in 1975. I vaguely remembered him saying before Mannie died that he should not be dialyzed for his kidney failure, and now, as a practicing physician, I wanted more details. My dad reminded me that Mannie had experienced a series of small strokes, which was probably the reason for his mental deterioration. Mannie had been admitted to the hospital for abdominal pain and a surgeon had made the presumptive diagnosis of dead intestine. The only treatment would have been emergency surgery in an attempt to remove the affected tissue, and my grandfather’s surviving that surgery was surely a long shot, given his age and concurrent illnesses. Hemodialysis to treat my grandfather’s failing kidneys was also possible but did not make much sense unless his intestinal problem was fixed.

When I inquired further about the decision to forgo surgery and dialysis and instead make Mannie comfortable, it seemed clear that my father had made the choice by himself. Given the poor overall prognosis and his expertise, it was certainly a reasonable option. And doctors made many such unilateral decisions in the 1970s. But as someone studying bioethics, I felt uneasy with both my father’s paternalism and his conflict of interest as the son-in-law of the patient. These concerns were validated years later when I read about Mannie’s death in a series of journal entries. “The only thing I can say,” my dad wrote in September 1975, “is that he was failing very quickly and this had to be the best way for him and for Nana [my grandmother Jessie].” Mannie, he added, had been “so very uncomfortable the last year of his life.”

Was it possible that Mannie’s quality of life, while unacceptable to my father, was actually tolerable from Mannie’s perspective? To the best of my recollection, he was still very interactive and mobile, with a healthy appetite. Maybe Jessie, his primary caretaker, actually had an idea of what Mannie would have wanted in such a situation. Even if not, what if she was not yet ready to let go? And did my mother, his daughter, have any say in the matter? The journals contain no mention of my dad discussing options with Mannie, Jessie, or my mom.

Ten years later, he was at it again. In June 1986, his aunt Libba, who lived in a nursing home, was hospitalized at the Mount Sinai with cancer. He made the decision that surgery and other aggressive therapy would be inappropriate. In this instance, my father was not simply giving advice to other doctors; he was the actual attending physician in charge of her care. It was a true conflict of interest. The bind he had gotten himself into was clear from a contemporaneous journal entry: “I’m trying not to prolong her life,” he wrote, “but it is difficult to do so.” Elsewhere, he wrote: “Have Aunt Libba in the hospital, trying to perform ‘passive euthanasia.’” The house staff actually objected to his “minimalist approach” to his aunt’s treatment.

Fast-forward to 1993. I can’t recall if my father and I discussed his cousin Donald, who was dying from prostate cancer at that time. But his journal entries again revealed his inclination to influence the care of his dying relatives, even if it meant inserting himself into discussions between his family members and their physicians. In this case, my dad worried that Donald’s pain and suffering were not being adequately treated.

It might be argued that in these cases, my father was merely serving as an intermediary, helping his relatives ensure that their loved ones received competent medical care that was both personal and efficient. But his concerns about the appropriateness of certain interventions—most notably the use of antibiotics and CPR, feeding tubes and intensive care—went far beyond offering logistical solutions. Rather, my father believed that many well-meaning physicians and hospitals had lost sight of the basic human gesture of allowing a person to die in peace, free from suffering. It was his job, he thought, to encourage—even insist—that they do so.

It might not seem logical, at first glance, to expect an infectious diseases consultant to become such a fierce advocate of the concept that came to be called medical futility. After all, physicians generally called in infectious-disease experts to cure infections and help patients recover. Early in his career, my dad saw this as his role. “When I was younger, it was easier to treat sick people,” he later reflected. “If they survived the infection I was called to manage, fine. If not, I didn’t give it a second thought, since I’d done
my
best and other factors . . . were responsible for the outcome.”

But over time, things changed. In the hospital setting, my father was often called to consult on extremely sick patients, many of whom had spent weeks or months there, had acquired especially complicated infections, and had little or no chance of recovery. Some of these individuals had long since ceased to live at home but bounced back and forth between nursing homes and the hospital. The problem, my father believed, was that too many of his colleagues did not take the time to “lay the groundwork” for patients and their families to make thoughtful decisions about end-of-life care. Patients and families were also to blame, extending the principle of autonomy to “ridiculous extremes.” “I can no longer separate what I do,” he wrote, “from the totality of the patient’s problems—the illness, the agony, the torture of a slow, but almost always, inevitable death, with the final months, weeks, days spent in the cold, artificial confines of the hospital, one of the most unpleasant situations I can imagine for such a purpose.” To participate in such cases, he added, was “inhuman and morally wrong” as well as “professionally bankrupt.”

As a result, my father increasingly viewed requests for antibiotic advice in such patients as misguided and instead asked
whether
such infections should be treated. Infection, he knew, was often the “final straw in the deterioration of so many of the body’s vital organs and functions.” Failing organs “encourage the growth of bacteria.” In such terminal cases, even though a particular drug was available to treat a particular bacterium, that did not necessarily mean it should be used or given. Once my dad began to question the use of antibiotics in such cases, he also expressed reservations about other, even more aggressive interventions that were being undertaken.

It was no coincidence that my father’s concerns about inappropriate end-of-life care became so passionate and angry in the early 1990s. Although the field of bioethics was two decades old and some of medicine’s major transgressions—such as human experimentation without the subjects’ consent—had been addressed, it was not until the late 1980s that doctors were forced to cede control of death and dying within hospitals. The first battleground had been in New York State in 1984, when a man discovered that physicians had let his hospitalized grandfather die of congestive heart failure instead of attempting to resuscitate him. It turned out that despite all of the new emphasis on patient autonomy, doctors had managed to retain control of the final chapter of life. Once revealed, however, this approach was no longer acceptable. In 1988, the New York state legislature passed the country’s first do-not-resuscitate law. Other states quickly followed. Although the laws differed, the basic premise was the same: the patient or, in the case of incapacity, the family got to choose whether or not CPR was to be performed. More important, the default option was to resuscitate, regardless of the patient’s condition.

As someone who was studying bioethics and would soon be teaching it, I believed that DNR laws were logical correctives to the often suffocating paternalism that had deprived dying patients of power for years. But as early as 1990, a backlash to the new autonomy emerged when Lawrence J. Schneiderman, Nancy S. Jecker, and Albert Jonsen published a paper entitled “Medical Futility: Its Meaning and Ethical Implications” in the June 15 issue of the
Annals of Internal Medicine
. The authors argued that, despite the wishes of patients and families, physicians were not obligated to provide futile care—such as CPR—that would not meaningfully improve patients’ medical conditions. It was the doctors’ equivalent of a Take Back the Night march, although, interestingly, of the three authors, only Schneiderman was a physician. Jonsen was my theologian mentor during my Seattle fellowship, and Jecker was a philosopher also on the faculty of the Department of Medical History and Ethics at the University of Washington.

The Schneiderman piece caused a great deal of controversy, and the
Annals
took the unusual step of publishing a second article in which the original authors detailed their critics’ objections and then responded to them. Here were three highly respected bioethicists advocating that the decision-making authority just taken away from physicians be restored to them—albeit in carefully chosen situations. For my part, although I had the utmost respect for the authors and thought the article was well argued, I worried that their notion of medical futility opened the door for physicians to once again insert their own value judgments into patient care. In other words, it was better to discuss the concept of futile care with patients and families than to overrule them. Ultimately, this sort of reasoning won the day and the impact of the nascent futility movement proved to be limited.

As the
Annals
was one of the dozen or so medical journals that my father read, he saw the Schneiderman article when it was published. He quickly became a supporter of the concept of medical futility, even contemplating whether he should devote his energies to becoming an activist in the field. The rampant misuse of technology was at times “criminal,” he wrote. “I’ve participated in the horrible and cruel prolongation of a biologic life, of a person whose disease process is totally irreversible—irretrievably so—but sustainable by inappropriate technology.” Not surprisingly, he was also highly disappointed in
Cruzan v. Missouri Department of Health
, a 1990 case in which the US Supreme Court upheld a Missouri law stating that, before the ventilator of a patient in a persistent vegetative state was discontinued, individual states could compel the family to produce “clear and convincing evidence” that the patient would not have wanted to be kept alive by medical technology.

My father’s journals detail the exact sort of seemingly futile cases that he encountered. For example, one elderly demented patient had both a feeding tube and a tracheostomy, a hole in his windpipe that was connected to a ventilator and enabled him to breathe. Although the patient was “never going to get better or leave a hospital-type setting,” according to my dad, “his family will not accept that reality and continues to pray for a miracle, which will not be forthcoming.” In other instances, doctors were the culprits, as in the case of a woman who had an “absolutely rampaging lymphoma” and was “obviously terminal and slipping rapidly.” Still, her hematologist was actively transfusing her with platelets, cell fragments that prevent bleeding. In reality, my father wrote, a brain hemorrhage due to her low platelet count “would have been the most merciful thing that could have happened to her and her family, to minimize her conscious suffering and their pain at her awareness of dying.”