Patient as Gift

“Sit down,” Mr. R demanded. “I've got something to say to you.” I shot the medical student a querying glance as we simultaneously sunk into our chairs. He continued, “You don't know me, and I got some things to tell you.” I thought I knew Mr. R, and I certainly had some idea of what he was all about. But then he called to me. In his summoning, Mr. R arrested all my preconceived ideas about him. And as the medical student and I began to understand him better, we wanted to know more. We began to engage him more deeply. In the subsequent days, caring for him somehow felt easier, akin to the care one gives a distraught friend rather than a difficult patient.     

The Stress Test

I felt good about myself, driving to the free medical clinic that evening. A full professor at a medical school, leaving my warm home on a cold night after a day at the hospital, seeing patients in clinic in the morning and teaching second‐year students medical ethics in the afternoon (autonomy was the theme; we'd covered beneficence and maleficence earlier in the week). Once a month, patients with cardiac problems come to the clinic, and this was the night. Two students presented the patient, a middle‐aged woman with chest pain. Their presentation was disjointed, in part because of their inexperience, in part because she spoke no English and her story was obtained with the help of a translator. Her eyes rarely met mine; she kept glancing at the translator. I auscultated her heart and lungs, letting the students listen through my stethoscope. What to do now? Had she been a patient that morning back in my clinic, I would have thought to myself, “I can't get a good history; why not do a stress test?” I thought, for what seemed like an eternity: If I send her for a stress test, that will deplete the funds needed for other patients. How important is this test? Is it really necessary? If I send her for a stress test, will someone with a suspicious mass on their chest x‐ray not be able to get a CT scan because no money is left?     

Home

“Where's Dr. Tunzi?” Flor bellowed from the waiting room. “Is he here today?” Tattooed and built like a short middle linebacker, Flor is one of my favorite people. Despite schizophrenia, hepatitis C, and diabetes, she lives up to her name with a colorful and sunny personality. She and her partner, Nancy (a bipolar breast‐cancer survivor with chronic pain due to severe osteoarthritis of the hip), have been my patients for about fifteen years, since I first met them at the small homeless clinic I help staff. I was away one day last year when Flor and Nancy came in. It would be an understatement to say that it wasted everybody's time. But “team care” and “patient‐centered medical home” are the buzzwords of the day.     

On Being Fired: When Patients or Their Parents Fire Their Physician

Wait, what? I've been fired?” I repeated, in the middle of morning rounds in the neonatal intensive care unit. Finally, the nurse who was taking care of our patient, Angela, responded, “Her parents fired you last night. They've already called Patient Relations. They want a new doctor.” My heart sank. Only days into my block of service time as the attending physician in the NICU and I was fired, axed, canned, rejected by a family. How could this have happened? On my first day of service, I had introduced myself to Angela's parents, and I had then met with them daily to review results and the plan and to answer their questions. I thought we had connected well. I thought I had done everything right. I thought they trusted me to care for their daughter.     

Dr. Douchebag: a tale of the emergency department

“I'm not afraid of dying,” he says, despite his plea on arrival. “Listen up, douchebag. Are you calling my cousin or what?” The emergency department might be the only sphere of human exchange where one party—patients (and sometimes family)—are permitted to insult, threaten, and even spit at the very people on whom they depend for help, while the offended parties—physicians, nurses, and other health care providers—must not only tolerate the abuse, but treat their tormentors. Does the ED's collective duty to greater numbers of patients demand a revised ethos of tough love for extreme cases of misbehavior? Can we ask these patients to leave without legal recourse after extending genuine, compassionate efforts to participate in their care—barring evidence of a medical explanation for their toxic comportment or a mental illness that puts them at risk of harming themselves or others?     

Physician,Patient, Parent: Where Exactly Is the Line?

I have Crohn's disease. This essay is about how my experiences with this disease have shaped my perceptions of boundaries in medicine, particularly around the issue of self‐disclosure. I became a pediatrician first, then a parent, and now a patient, and with each new role, I have become increasingly confused on where boundaries regarding self‐disclosures in medicine lie. I'd like to make the case for more of a reframing and a blurring of personal and professional boundaries regarding physicians’ disclosures about their own health. Although historically thought of as a way to strengthen the physician‐patient relationship and therefore encouraged, physician disclosure has recently become more controversial, and boundary discussions that include it seem to increasingly begin from the edict, “Don't do it.” But why not capitalize on the shared experience of physicians and patients? It offers an opportunity to deepen our therapeutic relationship with our patients, to build trust, to help understanding, and maybe even to improve patient outcomes.     

Why Won’t My Patient Act Like a Jerk?

I’m avoiding Mr. G’s room. I shouldn’t have read the emergency room notes from the other hospital, where this middle‐aged man raised a stink about the wait. What type of person calls the triage nurse a bitch? From the timestamps on the electronic medical record notes, he stormed from that ER and drove his abdominal pain, vomiting, diarrhea, and discontent directly across town to us. I’m reminded of this oft‐quoted aphorism from Sir William Osler: “The good physician treats the disease; the great physician treats the patient who has the disease.” It’s cited by medical educators as an invocation to never forget the humanistic heart at the center of clinical care. But what if the patient is a jerk? That I haven’t met Mr. G, only read briefly about him, doesn’t stop these ugly feelings from surfacing.     

Reasonable Persons,Autonomous Persons,and Lady Hale: Determining a Standard for Risk Disclosure

Among various kinds of disclosures typically required in research as well as in clinical scenarios, risk information figures prominently. A key question is, what kinds of risk information would the reasonable person want to know? I will argue, however, that the reasonable person construct is and always has been incapable of settling this very question. After parsing the nebulous if not “contentless” character of the reasonable person, I will explain how Western courts have actually adjudicated cases of “negligent nondisclosure,” that is, cases in which patient-plaintiffs allege that their informed consent rights were violated by the failure of their health providers to inform them of reasonably foreseeable risks that subsequently materialized. To support my argument, I will scrutinize the landmark decision by the United Kingdom's Supreme Court in Montgomery v. Lanarkshire Health Board and, in particular, Justice Brenda Hale's concurrence.     

Of Drowning Children and Doubtful Analogies

In this issue of the Hastings Center Report, James Sabin and his colleagues ask what responsibility investigators in a learning health organization have to patients when research—particularly research of which patients might be unaware—illuminates problematic aspects of the patients' care. Sabin and his colleagues were confronted by this question in the midst of designing a randomized controlled trial that sought to determine if an educational intervention targeted at patients with atrial fibrillation and their clinicians reduces underuse of oral anticoagulants. Worried about harm that might befall patients in the control group and fearing that they would be negligent bystanders if they knew these patients were at risk and did nothing, the investigators adopted a “workaround.” But the “workaround,” I suggest, was not a solution to the negligent bystander problem. Nor was it a solution to the problem as I would alternatively frame it—how to address instances of suboptimal patient care identified through research within learning health organizations.     

Empty Spaces

“I'm Jewish, you know, and my mother said, ‘Always trust the rabbis.’” I never heard Mr. Weisman's refrain from his own lips. I never heard him say any words all. By the time I met him he was in a vegetative state, a man on the precipice of invisibility—white hair, thin pale limbs, melting into sheets of the same color. When I think about Mr. Weisman, I see empty spaces—the absence of his voice, the too‐large bed for his shrinking frame, the always‐empty chair by his bedside, and most of all, the myriad gaps in his life story. He was what in hospitals is often called a “patient alone”: someone who lacks decisional capacity and has no surrogate to make medical decisions for him. Mr. Weisman's aloneness prompted his primary team to consult our bioethics service in order to formulate goals of care for him, including the possibility of hospice care.     

Show Code

“Let's get one thing straight: there is no such thing as a show code,” my attending asserted, pausing for effect. “You either try to resuscitate, or you don't. None of this halfway junk.” He spoke so loudly that the two off‐service consultants huddled at computers at the end of the unit looked up… We did four rounds of compressions and pushed epinephrine twice. It was not a long code. We did good, strong compressions and coded this man in earnest until the end. Toward the final round, though, as I stepped up to do compressions, my attending looked at me in a deep way. It was a look in between willing me as some object under his command and revealing to me everything that lay within his brash, confident surface but could not be spoken.     

Competence in Plain English

Like many other bioethicists, I often give talks on clinical topics that may touch on the patient's right of autonomy with regard to medical treatment and, from there, may move to questions about whether said patient has the capacity to exercise said right. When I get to that subject, I might ask, “Is this person competent to refuse treatment?” A stunned silence falls over the room, until finally a hand shoots up. “‘Competent’ is a legal term,” I am instructed. “Don't you mean to ask whether he has the capacity to make decisions for himself?” The tone suggests that I'm being helped to make a very important distinction. But it's not a very important distinction; and it's misleading to boot.     

Whatever Happened to Human Experimentation?

Several years ago, the University of Minnesota hosted a lecture by Alan Milstein, a Philadelphia attorney specializing in clinical trial litigation. Milstein, who does not mince words, insisted on calling research studies “experiments.” “Don't call it a study,” Milstein said. “Don't call it a clinical trial. Call it what it is. It's an experiment.” Milstein's comments made me wonder: when was the last time I heard an ongoing research study described as a “human experiment”? The phrase is now almost always associated with abuses. Asking a prospective subject to sign up for a medical experiment would probably get roughly the same response as asking him or her to sign up for a police interrogation. It wasn't always this way. In the early days of American bioethics, scholars used the word “experimentation” in the same neutral way that they later began to use “research study” and “clinical trial.”     

Glossed Over

I open the glossy cover of my alma mater's alumni magazine. Images of new frontiers in medicine abound—state‐of‐the‐art research buildings and the latest in high‐tech hospital innovations. Nestled among the articles on cutting edge medicine is a feel‐good story about medical students. The article profiles volunteer medical students and their uninsured patients with chronic health conditions. At one site, they are touted as providing “the only medical care.” Indeed. I think back to my medical student days and cringe.     

The art of presenting – Failures,fonts and the future

Many of you, like me, will have given countless presentations throughout your career and to wide and varied audiences. I too, like many of you, have never been formally taught how to present, if that is such a thing. So, I got to thinking: in any case, who are “expert presenter” teachers? Some people have it and some people do not – right? In this short piece, I explore what it is to present, how this evolves, and try to pin down the why rather than the how and give you a little insight into my haphazard journey along this process.     

The Doctor‐Patient Relationship (When You're Neither)

Despite what I wrote in my medical school applications, my relationship with medicine wasn't always the torrid love affair I made it out to be. Organic chemistry wasn't really my favorite class (or my second favorite, or my third). My heart didn't actually skip a beat as I waited for protein isolates to complete their snail‐paced race across an agarose gel. And while I certainly enjoyed the surgeries I scrubbed into as an undergraduate, even they lost their charm during the fifth hour of standing at attention, hands glued to my chest, petrified I would break the sterile field or pass out from starvation. For me, a career in medicine was a leap of faith. I had to trust that those flashes of meaningful human interaction I experienced early on would increase in frequency and intensity over the course of my career. Fortunately, I have not been disappointed thus far.     

Dying during Covid-19

I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, “You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her.” Madeleine, who was twenty-four years old, was dying of end-stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment—in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid-19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients’ and families’ experiences at the end of life during a pandemic.     

Yields and Rabbit Holes: Medical Students’ Typologies of Sufficient Knowledge

ABSTRACT

Given the vastness of bioscientific knowledge and regular changes in evidence and protocol, how do individual clinicians make decisions about what to know and what to ignore? In this article I identify a process termed “sufficient knowledge:” the prioritizing of medical knowledge perceived as most important, while ignoring information that is not deemed essential or applicable. Drawing on 14 months of ethnographic fieldwork at an allopathic medical school in the American Midwest, I describe three typologies of sufficient knowledge that medical students devised to distinguish what to know and what to ignore or deemphasize: high yield knowledge, low yield knowledge and “rabbit holes.” I aim here to contribute to a growing topical and theoretical discussion of ignorance by social scientists, especially to generate a more balanced picture of physician training and practice beyond depictions of knowledge and expertise.     

Pursued by happiness and beaten senseless. Prozac and the American dream

Since the publication of Listening to Prozac there have been many debates about how and why Prozac and other similar drugs are prescribed. The articles that follow take up debates about what conditions such drugs can and should address, questions about authenticity in using drugs for psychic well‐being, and concerns about what means we morally endorse in projects of self‐creation. The contributions from Carl Elliott, Peter Kramer, James Edwards, and David Healy derive from a project supported by the Social Sciences and Humanities Research Council of Canada, “Enhancement Technologies and Human Identity.” Psychiatry, like the Prozac it prescribes, aims to enhance the patient's internal psychic well‐being. Yet what ails many may be not an internal state like depression or anxiety, but alienation. And the experts of the self to whom we turn cannot “cure” our collective form of life in which alienation takes root.     

From the Foundation Up

In 2019, The Hastings Center will celebrate its fiftieth anniversary. It is more than a bit staggering to think how far we have come since 1969. When I floated the idea of a center on bioethics to my friend and neighbor, psychiatrist Willard Gaylin, at a Christmas party in 1968—even before the word “bioethics” was used—I had only the fuzziest idea of where that would take us. Neither Will nor I had run anything, nor did we know how to raise money to support an organization. We would and did learn how, but much of what we did in those early years was made up on the fly. We not only had to invent an organization but no less to invent a field of research and education on issues still little noticed by the public or academics. Out of curiosity, I recently googled “bioethics.” I was astonished at what I found and by the sheer quantity of what is going on.