OCTOBER 25, 2019
THE FIELD OF BIOETHICS was born from a bold proposition. After the abuses of medical authority that accompanied many 20th-century tragedies, from the Holocaust to the Tuskegee Syphilis Study, its philosophers argued for principles of bodily integrity — for bodies as worthy of respect and existing apart from “doctor’s orders.”
And yet, bioethics as a discipline can seem curiously disembodied, as if it speaks more for its institutional review board than for actual patients. In a typical piece of bioethics prose, the author floats as a kind of omniscient narrator between provider and patient, commenting upon the mechanisms of care without caring to get involved. No wonder public health advocates like Paul Farmer and Nicole Gastineau Campos have critiqued the field as a kind of “quandary ethics” — useful enough for resolving disputes inside developed institutions, but estranged from most of the world’s strife.
By contrast, in his new book In Pain, bioethicist Travis Rieder puts his own suffering at the center of his philosophical endeavor. He recounts how his career as a Johns Hopkins professor was derailed by a horrific motorcycle accident, which in turn led to a dangerous dependence on opioids. Using this story first to build an argument about physicians’ obligations to patients, he then explores the implications of that argument for addiction, pain management, and the broader opioid crisis.
At first, I was skeptical of the conceit: at a time when opioid addiction is destroying communities and driving down national life expectancy, the tagline “bioethicist gets hooked on pills and articulates new ethical guidelines” seems a little navel-gazey, even solipsistic. Like Farmer and Gastineau Campos, in my own work as a health-care consultant and researcher, I’ve often found bioethics to be an awfully narrow orifice through which to squeeze injustice and bodily suffering. There’s simply too much “quandary,” as it were, to fit into its frameworks.
But Rieder’s use of his own experience as a basis for his writing enables a broader approach, expanding the circle of empathy beyond the clinic, and inviting us all to reconsider our relationship with pain — our own as well as that of others. It’s a book that anyone who cares for people in pain should consider reading.
Before his accident, Rieder tells us, he was a man too busy to get hurt. He had just started a new post at the Johns Hopkins Berman Institute of Bioethics in Baltimore. He and his partner were also trying to figure out how to balance their careers with the recent birth of a child. That all changed on May 23, 2015, when Rieder’s motorcycle was side-swiped by a van, smashing his foot in a way that literally tore flesh from bone. His doctors weren’t sure he could keep his foot and doubted he would ever walk again; one of them called his injury “a salvage situation.”
Defiant about his prognosis, he was determined to beat the odds. As his doctors duly described the various contingencies his many surgeries involved, he wasn’t hearing “these warnings as warnings.” Rather, he writes: “I was hearing a stepwise instruction book.” After the surgeries, “I would be back to being myself,” he imagined.
In some ways, he was right. Rieder’s surgeries were great technical successes, and by the time he wrote his book a couple of years later, he was walking without crutches. Along the way, however, he was transformed by pain.
Given the way trauma clouds the mind, Rieder has recalled the details of his suffering to a remarkable degree. He describes his shame in showing his partner the full extent of his trauma; his desperation in trying to communicate each need to a new nurse; his yearning for death as a reprieve from suffering; the burdensome minutiae of tracking treatments and costs amid the fragmentation of modern American medicine; and, eventually, the small victories of physical therapy and a new identity as a trauma survivor.
But unique to this narrative is Rieder’s use of the philosophy and history of clinical pain as a counterpoint to his story. Early on, Rieder learns to navigate the “pain scale,” the one to 10 ranking nurses and physicians use to communicate with patients. (Many a hospital whiteboard now pairs the numbers with emoji-like faces in various degrees of agony.) Like most patients, Rieder initially finds the scale absurd but over time realizes its use. As the bioethicist in him explains, pain is confounding for modern medicine because it is a subjective experience in a system dominated by objective indicators. As silly as it may seem, the pain scale is a reasonable compromise. Though some clinicians have tried to use pain as a “fifth vital sign” in treatment, Rieder explains why, in practice, this is unworkable. Pain’s subjectivity, and its distorting effect on our thoughts, means it will always complicate relations with providers and caregivers, even before taking into account factors like opioids and addiction. Waking up after one of his surgeries to a terrible pain not in his foot but in his arm, Rieder’s mind races through an array of possibilities, including the terrifying prospect that his medical team has committed “wrong site surgery” — the stuff of “quandary ethics” nightmares. While struggling to persuade his caretakers that this new pain exists, he is treated like a child, patronizingly reminded that the operation was on his foot. Eventually, one of the nurses realizes that during the nine hours of surgery, his arm had been left dangling in a way that hyperextended it. “It happens,” she concludes. And Rieder remembers: “I would have been furious if I’d had the energy for it.” It could be the motto for patients everywhere.
The key problems posed by Rieder’s pain are relational, and for these, he provides a vocabulary many other patients might not possess. For example, he identifies the failure of physicians to take his post-op pain seriously as a form of “epistemic injustice” suffered by many other patients. But as Rieder’s more quotidian recovery stretches before him, the most relevant question he (and his family) must address is: “Whose responsibility was I?” The real problem in Rieder’s story isn’t his injury or cure, but his relationship to his doctors and the chief pain management tool in their arsenal: opioids.
Initially, the drugs seem to function as intended. But just as his prognosis improves, one of his doctors informs him that he is still on an unsafe level of opioids, with a risk of overdose and addiction. At the same time, his body’s tolerance for the drugs is increasing, making it more difficult for him to reduce the amount he is taking. One doctor is judgmental, while another nonchalantly advises that he can wait to go off the meds until an undefined point in the future — “when he is ready.” As Rieder later discovers, there are extensive clinical guidelines for tapering down opioid treatment, but only a fraction of the many doctors empowered to prescribe opioids know about them.
Once he is back home, an inpatient pain center no longer takes his call. A search of methadone clinics and addiction centers yields nothing, since these are reserved for patients in more dire straits. Even his clinicians acknowledge that Rieder has fallen “in the cracks” of the American health-care system. As many a critic has observed, these cracks contain multitudes.
At this point, I found myself anxiously flipping ahead to find out if Rieder became addicted to heroin, as many opioid dependents do. The answer is no. In fact, he never uses the drugs other than as prescribed. Yet, he still experiences all the humiliations of the downward spiral of addiction: insomnia; inability to care for his family or even just watch an episode of serious television; nausea and vomiting in the bathroom interspersed with hours on the couch trying to sleep; hours in a therapeutic hot tub trying not to feel anything. It’s not much of a life, so it comes as no surprise that Rieder experienced suicidal ideation. And all this occurred within the bounds of a “normal” clinical experience.
Rieder alternates episodes of his story with expository chapters on pain and opioids. At times, he turns himself into a sort of universal patient:
I represented one of the medical community’s most distressing dilemmas: a patient in obvious severe pain but begging for medication that is killing tens of thousands of people a year. The fact that different doctors, in different moments, treated me in radically different ways is completely unsurprising. Because no amount of public hand-wringing or blunt policy tools is going to make it clear what to do with patients like me. We’re a problem, and there’s no obvious solution.
Over the next several years, Rieder recovers, getting off the pills and out of his surgical boot. His colleagues encourage him to tell his story. So at professional conferences he begins framing his experience as a case study, using it to articulate a new ethical principle: “A physician who prescribes a medication with predictable and harmful side effects is obligated to work to mitigate those side effects, or at least to ensure that the patient has access to someone who will work to mitigate those side effects.”
It’s a good idea as far as it goes. The trouble is that most physicians and care providers would say this is a principle they already follow. This suggests, as Rieder implies elsewhere, that the real problem isn’t moral but epistemic — providers don’t perceive the pain to which they are directly and indirectly connected. They themselves cannot measure it. This is reflected in the greater insistence of Rieder’s colleagues that he share his narrative than his argument. Health-care providers need to understand that such patient experiences are real, even if they aren’t as readable as an MRI.
But I would argue that an even more important aspect of Rieder’s book is the framework he develops for understanding the needs of everyone in pain. In 2015, as an “innovator in residence” at USC, I conducted research for the development of a new department of nursing at the Suzanne Dworak-Peck School of Social Work. My goal was to gain new insights into the way care providers can respond more effectively to social determinants of health: factors like poverty and racism, which are extrinsic to the clinic but nevertheless drive morbidity and mortality. The concept is encapsulated in the observation that, in the United States, the ZIP Code where one is born has a greater effect on one’s lifetime health than one’s genes.
By the end of the study, my informants had made it clear that real progress would require providers to draw upon a still broader coalition of stakeholders than even currently indicated by calls for interdisciplinary teams. They would need a new approach to patients, communities, and systems that would allow them to make progress against social determinants. I nicknamed this approach “relational competence,” taking inspiration from the principle of “cultural competence” that was then in vogue in social work.
These days, cultural competence is déclassé. Calls for “cultural humility” have taken its place, with advocates pointing out that no one can be “competent” in someone else’s culture; instead, histories of racism and oppression should incline us toward an attitude of humbly learning from the Other. This is a welcome shift, and it makes sense to adapt it to health care. Rieder shows us how. By situating his own humiliation at the center of his project, he models a “relational humility” that all of us who presume to take on the care of others could learn from.
After articulating his new bioethical principle, the last third of Rieder’s book is, perhaps appropriately enough, built around relationships, not rational arguments. Each relationship enables him to explore a different aspect of our national pain crisis: the decimation of small towns by OxyContin abuse, the failure of policymakers to adopt a harm reduction approach to addiction, and racist biases toward drug abuse. There are better books on all these subjects, and Rieder cites them. The impact of his book, however, is not in the knowledge it provides, but in the way in which he relates to it.
He is at his best when he recognizes his own privilege as an educated white professional, a recognition heighted by his encounter with an African-American woman who attended one of the first events at which he spoke publicly about his struggles. “Why do you think we’re just now talking about opioids so much?” she asked him. “You’d think we’d just discovered drugs in this country.” At first, he gives an answer that might impress a public health class, but he can tell she is dissatisfied. After a short exchange, they get to the heart of it. “It’s because white kids started dying,” she tells him. “I’ve had an opioid epidemic in my community for as long as I can remember, but we don’t talk about that one. It’s a crisis now that white kids in West Virginia die from OxyContin instead of black kids in the city dying from heroin.”
As Rieder explains, the epistemic injustice he faced as a patient is experienced far more profoundly by people who must suffer through racism and other forms of structural oppression: “When I became a pain patient, I — perhaps for the first time in my life — became part of a group that is stigmatized and marginalized. […] I, now, a pain patient, was part of a group whose testimony is taken to be unreliable.” This is the crux of the matter. He became an unreliable narrator of his own body. But others have it worse: “Suspicion is not distributed evenly,” he writes, describing the multiple layers of injustice experienced by pain patients who are not male, middle class, and white. Care providers are both less likely to acknowledge the pain of nonwhite patients and more likely to suspect them of drug-seeking behaviors. Rieder’s episode of diminished status (and so of purported unreliability) helps him inhabit, however partially, this injustice rather than merely observing it.
Rieder also addresses less culturally charged relationships in the last part of the book: for instance, opioids in the context of his mother’s double knee replacement, or in an ascetic friend’s decision to minimize their use when undergoing surgery. He hangs out with military doctors who are exploring alternate treatments like acupuncture and articulating a new philosophy of pain in collaboration with soldiers. In these last pages, he even shows empathy for Mike Pence, of all people. Rieder lived for six years in Indiana when Pence was governor. Under his watch in 2015, the endemic opioid abuse in rural Scott County metastasized into an HIV epidemic from needle sharing. Like many conservatives, Pence opposed the type of needle exchange programs that might have prevented this. But when the HIV problem mushroomed, he ultimately gave his tortured consent to an exchange program. Even as he announced the plan in March 2015, Pence intoned: “I do not support needle exchange as anti-drug policy.”
Many authors (including this one) would be unable to describe Pence’s actions without resorting to morally outraged prose. But Rieder uses Pence and his ilk to develop a grammar of assent that might gradually lead to more ambitious harm reduction policies. As public health advocates know, the most logical strategy is providing not only safe injection sites for drug addicts, but a safe supply of drugs for addicts to take until they get clean (heroin is often laced with fentanyl and other even more dangerous substances). This is clearly a stretch for the Mike Pences of the world, but Rieder suggests they can get there. In short, Rieder provides us with a bioethics that is not passively analytical, but peacefully agitative.
Perhaps “relational humility” is too highfalutin a phrase for what people used to call “there but for the grace of God go I.” But as Pence demonstrates, in the United States today the self-described “godly” rarely go there. By the end of his book, Rieder has argued that the opioid crisis might give us a chance to regain that kind of grace. More Americans are abusing opioids than ever before; more Americans are dying from overdoses than ever before; researchers have estimated that more than 100 million Americans may be suffering from some form of chronic pain. It’s easy to say that every crisis can also be viewed as an opportunity, but Rieder’s suffering affords him the authority to argue that the opioid crisis may well be Americans’ best chance to expand our circles of empathy to finally include everybody.