field notes

I'm snowed in at The Hastings Center, looking out the window at the Hudson, and I'm thinking a lot about words. At a recent lunchtime talk, the term “eugenics” came up. The implication was that if something is “eugenics,” then it's wrong—end of story. But as somebody pointed out, that kind of rhetoric is too easy. It becomes a stand‐in for an ethical argument and allows us to skip the actual thinking. Why is eugenics bad? What kind of eugenics are we even talking about? Surely the Nazi model is not the only game in town; is there a sense in which simple mate choice could be a form of eugenics? I won't attempt to answer these questions here. My point is only that we should remember to ask them. Something similar occurs in science and medicine. All too often, suggestive phrases are used instead of step‐by‐step reasoning.     

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.     

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.”     

The e-patient and medical students

The recent publicity around the tragic case of Bronte Doyne has highlighted a pressing need in healthcare delivery: the need for doctors to know that their patients, “e-patients,” know medicine. In turn, this requires our medical students to be trained in how best to utilise the potential of e-patients in healthcare delivery.

“I can't begin to tell you how it feels to have to tell an oncologist they are wrong, it's a young person's cancer. I had to, I'm fed up of trusting them.” – Bronte Doyne (Vize 2015)     

You Can't Always Get (or Give) What You Want: Preferences and Their Limits

People who lack decision‐making capacity may be able to communicate preferences, which can and should inform surrogate decision‐making on their behalf. It is unclear whether making a further distinction about “capacity for preferences,” as Jason Wasserman and Mark Navin propose in this issue of the Hastings Center Report , would improve the process of surrogate decision‐making. Anyone who is regularly involved in surrogate decision‐making or who has worked to articulate decision‐making standards and processes can think of cases in which a patient's voice was ignored or his or her preferences and ability to communicate them overlooked. However, we can also think of cases in which it was unclear whether information provided by a patient, recently or in the past, should have been characterized as a preference relevant to a medical decision that the patient lacked the capacity to make. We should also recognize that clear preferences of a patient who lacks decision‐making capacity may conflict with the limits of another person or of a family's resources such that these preferences cannot guide a surrogate's decision. This patient will not get what he wants. A situation in which preferences are known and make sense but cannot be applied in a feasible way demonstrates the limits of the medical decision‐making framework concerning care that is not covered by medical insurance.     

The Intimate Responsibility of Surrogate Decision‐Making

Daniel Brudney's clear‐headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the (competent) patient has a right to decide because she is presumed to know her own interests better than anyone else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision‐making, it's intimacy, not knowledge, that does the heavy moral lifting.     

What's in a Number?

“I'm a six,” Freddy Lowell says after a thoughtful pause. Seven milligrams of Dilaudid, a potent narcotic pain reliever, is already being pushed into a port in his chest by a visibly busy nurse. She registers his pain score with a grunt. She will be back in two hours to ask for an updated number. At some point during this time, his pain will creep back, so strong it will render him mute. When the nurse next inquires, he will respond with seven fingers, his face buried in his pillow. The Numerical Rating Scale has been a mainstay of clinical care since the late 1990s, when pain came to be referred to as the “fifth vital sign” alongside temperature, blood pressure, heart rate, and respiratory rate. But while the first four are measured with precise objectivity, pain is nuanced, complex, and personal, so much so that Freddy will quickly chastise anyone who tries to empathize with his plight. “Nobody knows what it's like,” he says decisively.     

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?     

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.     

Passion, activity, and "the care of the self"

To ask whether we should use Prozac or other technologies as “enhancement” is perhaps to ask the wrong question, one that belongs to a life of what Heidegger discerned as technological ordering (die Technik). We might better ask a question belonging to a life of receptivity (Gelassenheit): Can or should we—some of us—live differently than we do?     

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.     

Rationing Care through Collaboration and Shared Values

Although “rationing” continues to be a dirty word for the public in health policy discourse, Nir Eyal and colleagues handle the concept exactly right in their article in this issue of the Hastings Center Report. They correctly characterize rationing as an ethical requirement, not a moral abomination. They identify the key health policy question as how rationing can best be done, not whether it should be done at all. They make a cogent defense of what they call “rationing through inconvenience” as a justifiable allocational technique. And they wisely call for research on the effectiveness and fairness of this approach and other methods of rationing. I fully agree with their approach to rationing and with their argument that the process they provocatively label “rationing through inconvenience” should not be rejected out of hand. But I believe they have underestimated two ways in which the practical impacts of rationing through inconvenience limit its potential usefulness: the asymmetry of its effect on patients and physicians and the way in which it reduces the capacity of health systems to learn from experience.     

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.     

Changing the Question

Jack, who is seventy‐five years old, is in the hospital with a terminal condition that has undermined his cognitive faculties. He has left no advance directive and has never had a conversation in which he made his treatment wishes remotely clear. Yet now, a treatment decision must be made, and in modern American medicine, the treatment decision for Jack is supposed to be made by a surrogate decision‐maker, who is supposed to use a decision‐making standard known as “substituted judgment.” According to the substituted judgment standard, Jack’s surrogate decision‐maker, his wife, is supposed to decide on his treatment by determining what Jack would do if he did have decisional capacity. That is, she is supposed to answer the question, what would the patient choose? I will argue that this is the wrong question to ask because when the question has a determinate answer, that answer is sometimes not sufficiently connected to the value that is supposed to make the question morally salient, and because sometimes, perhaps often, there is no determinate answer to the question of what the patient would choose. Jointly, these two problems suggest the need for a different question.     

The Promise and Perils of Open Medical Data

Not long ago I visited the Personal Genome Project's website. The PGP describes its mission as “creating public genome, health, and trait data.” In the “Participant Profiles” section, I found several entries that disclosed the names of individuals along with their date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, medical procedures, and more. Other profiles did not feature names but provided all of the other details. I had no special access to this information. It is available to absolutely anyone with Internet access. The PGP is part of a trend known as “open data.” Many government and private entities have launched initiatives to compile very large data resources (also known as “big data”) and to make them available to the public. President Obama himself has endorsed open data by issuing a May 2013 executive order directing that, to the extent permitted by law, the federal government must release its data to the public in forms that make it easy to locate, access, and use.     

The Clue

As I stood outside of Carlos's room, I felt caught on the horns of a dilemma. It seemed impossible to truly “be there” for Carlos without sacrificing my other intern duties. This tension pervaded much of my residency training, as I often found myself spending more time completing chart notes, answering pages, and giving sign out than I did at the bedside with my patients. I knew I had a duty to “do my job”—I could not let my team down. But what about my duty to Carlos, a duty to act on my intuition and try to “get to the bottom” of his illness, if that was even possible? And what about my thirteen other patients? Wasn't I was their doctor as well? I have spent countless hours studying the ethical frameworks for medical rationing. And yet no framework could have told me how to weigh my intuition in that crucial moment of decision‐making, or when it was okay to leave a few notes unfinished in order to have the time to talk with Carlos. Suddenly, I knew what I had to do.      

On Legalizing Physician‐Assisted Death for Dementia

Last November, soon after Colorado became the latest state to authorize physician‐assisted suicide, National Public Radio's The Diane Rehm Show devoted a segment to legalization of “physician assistance in dying,” a label that refers to both physician‐assisted suicide and voluntary active euthanasia. Although the segment initially focused on PAD in the context of terminal illness in general, it wasn't long before PAD's potential application to dementia patients came up. A caller said that her mother had Alzheimer's disease and was being cared for at great expense. Suspecting that she will suffer the same fate, the caller reported that she had included in her will “my specific request that if I should be diagnosed, and it is legal to do so, I would like to opt out of a life and many years of suffering.” A few countries, such as the Netherlands and Belgium, already allow PAD for dementia in certain circumstances. It wouldn't be surprising to see a U.S. legalization effort in the coming years.     

Holding the Tension

My colleagues and I had been asked by a member of a clinical team to help sort through the ethics of stopping a life‐sustaining intervention for a very ill child. We had already talked with the parents, the physicians, and the folks from nursing, social work, and chaplaincy. Terms like “suffering,” “cruel,” “compassion,” and “moral distress” had been uttered, as had terms like “inappropriate,” “unethical,” “neglectful,” and “risk‐management.” The group had now stuffed all of these polarizing thoughts and feelings into this cramped room with only one door. And everyone was looking at me. What skill, competency, or inner capacity must one possess to hold and manage such tension?     

The Problem of Clinical Deception and Why We Cannot Begin in the Middle

In this brief commentary, I offer an appreciative yet critical analysis of Abram Brummett and Erica Salter's article, “Mapping the Moral Terrain of Clinical Deception.” I challenge the authors to clarify their choice of the term “deception” (as opposed to “lying” or “dishonesty”), and I explain how these different terms may affect one's moral analysis. I also draw attention to the authors’ claim that veracity is the ethical default of clinicians. I argue that their failure to defend this claim renders their framework more limited in its usefulness than they seem to acknowledge. While their framework does an excellent job of identifying morally salient features of clinical deception, it cannot be used to measure the strength of justification for an act of deception apart from a normative conception of truthfulness.     

The Disposable Author: How Pharmaceutical Marketing Is Embraced within Medicine's Scholarly Literature

The best studies on the relationship between pharmaceutical corporations and medicine have recognized that it is an ambiguous one. Yet most scholarship has pursued a simpler, more saleable narrative in which pharma is a scheming villain and medicine its maidenly victim. In this article, I argue that such crude moral framing blunts understanding of the murky realities of medicine's relationship with pharma and, in consequence, holds back reform. My goal is to put matters right in respect to one critical area of scholarly interest, the medical journal publication. Pharma relies on peer advocacy to sell its wares to prescribing doctors. This is an arrangement in which clinicians’ qualified colleagues, including “key opinion leaders,” are recruited by pharmaceutical corporations and marketing agencies to deliver commercially expedient content to their professional fellows. Precisely how this practice works in the setting of publications is not well understood because ethicists studying the problem have made too much of the narrative of corporate villainy and medical victimhood. Accordingly, criticism of industry publications has been preoccupied with the crudely dishonest practices of ghostwriting, ghost authorship, and “ghost management,” vices condemned as “dirty little secrets” perpetrated from “behind the scenes” with the connivance of academic “shills” or “guest authors,” in contempt of standards set by the International Committee of Medical Journal Editors. This account is appealing, and yet it is wrong or, at the very least, seriously incomplete, with only limited relevance to the actualities of contemporary industry practices. In truth, many commercial publications are not developed in secret but fashioned within a culture of open collaboration, where academic authors make substantial, independent contributions; pharmaceutical companies are showcased rather than hidden; and medicine's editorial standards assist rather than impede the workings of commerce.