By Ann Neumann
“There is no such thing possible as an ethical philosophy dogmatically made up in advance.”
—from the first line of William James’s “The Moral Philospher and the Moral Life,” an address to the Yale Philosophy Club and published in the International Journal of Ethics, April 1891.
In the title story of Jacob Appel’s Miracles and Conundrums of the Secondary Planets, Red Ziggy runs a diner that is across the street from an abortion clinic. He deftly negotiates his clientele – fiery activists for and against abortion – through breakfast and lunch services. Against his better judgment, Ziggy falls for an anti-abortion activist, perhaps because of her persistence and passion.
Miracles and Conundrums is a collection of eight stories whose characters confront ethical quandaries of the medical kind. In “Phoebe with Impending Frost,” a single mother, Phoebe Marboe, is grieving and caring for her young daughter who is dying of cancer. Marboe’s neighbor, who, in his own grief, spends his days ripping invasive plants out of his expansive property, gives her a fatal poison that she considers using to end her daughter’s pain, or perhaps her own. In “The Resurrection Bakeoff,” a young couple struggle with a cancer diagnosis as an “epidemic” of resurrections—the deceased are returning to life, surprising loved ones who may or may not want them back—threatens to change the way they consider death. “What if death isn’t permanent?” they ask with trepidation.
As a medical doctor (as well as a lawyer, bioethicist, and medical historian) Appel imbues these stories with an expert knowledge of the ethical debates surrounding each of the life-and-death situations his characters encounter. But Miracles and Conundrums also stands alongside a rich literary tradition: the physician writer. The work of literature has always been to reflect the world back to us, to explain the joys and vagaries of life, and to interrogate the numinous. What does it mean when doctors take up literary work alongside research and treatment?
The English poet John Keats was a doctor. So was the German poet and essayist Friedrich von Schiller. Mikhail Bulgakov, Anton Chekhov, Oliver Wendall Holmes, W. Somerset Maugham, Albert Schweitzer, William Carlos Williams, Stanislaw Lem, and Sherwin Nuland were all doctors. So are Michael Crichton, Khaled Hosseini, Alexander McCall Smith, Oliver Sacks, Siddhartha Mukherjee, Danielle Ofri, Atul Gawande, and Abraham Verghese. I could go on. It’s fair to say that without physician writers the literary canon would be altogether different.
What then makes some physicians such good storytellers? Their professional lives are spent in the midst of the sharp details that make up life: the premature labor pains in the middle of the night, the twisted knee in the middle of soccer season, the failing eyesight, the calcium deficiencies, the faulty hearts and kidneys, the successful hip replacement, the fatal cancers. “All the elements of a story are readily available to any doctor: plot, protagonist, antagonist, setting, dialogue, and theme. Physicians witness struggle—disease, death, and suffering—all the time. They have a rich pipeline of poignant images, unforgettable language, colorful characters, and vexing irony in any single day,” wrote Tony Miksanek in 2009 at the Literature Arts and Medicine Blog, published by the NYU School of Medicine.
But doctors don’t just encounter lots of good material (their patients). They also have to craft narratives (their patients’ stories) out of these observations in order to make accurate medical diagnoses. How long has a she had pain in her lower back? Where and when does it occur? Could it be a sign of cancer, grief, a pulled muscle, or simple fatigue? Is her insomnia another symptom of a larger problem or is it caused by the back pain? By piecing together physical observation with the patient’s stories, doctors must match them up to the patient’s history and medical case histories. Doctors make a narrative out of the missing pieces. The body, then, is a dramatic story, rife with telling details both specific and universal. What to include and what to leave out isn’t simply the craft of editing; it’s an ethical and informed decision-making process that can determine the future of the patient’s life. Storymaking, then, has grave consequences, particularly in the medical setting.
“A life story doesn’t just say what happened,” wrote Julie Beck in a recent article about the power of storytelling, “it says why it was important, what it means for who the person is, for who they’ll become, and for what happens next.” When that person is a patient, the narrative becomes the joint project of both her and her doctor. The accuracy of that narrative determines nothing less than how she lives or when she dies. The practice of discerning illness—of crafting the right narrative—and making accurate prognoses is an ethical act that must weigh the value of life. It must be grounded in a foundational understanding of what our responsibilities are to each other.
Medicine has always relied on storytelling as its greatest diagnostic tool. But last century, changes in medicine strained the doctor-patient relationship. Doctors looked for a source of moral authority to help navigate new technological developments and found old dogmas unhelpful. The field of ethics was having its own problems: traditional inquiries and infighting had bogged it down and threatened to make it irrelevant. At the same time, legacy religions had begun to lose their influence on politics, law, and society at large. Out of medicine’s crisis of conscience and ethicists lull into irrelevance came a new field of study, bioethics. The story of the rise of bioethics is in many ways the story of the triumph of narrative.
The 1960s and 70s were a period of unprecedented development in medicine. New technologies like respirators and defibrillators were changing how we died and putting families and doctors into situations no one had experienced before. Cases like that of Karen Ann Quinlan confounded doctors. She was a young woman whose car crash left her unconscious and severely brain-damaged. Only machines kept her heart and lungs working. After years of hoping for their daughter’s recovery, the Quinlans finally accepted her state and asked that their daughter’s machines be removed. This was new territory for the courts, which were asked to define life in the face of this new medical diagnosis. Both the Quinlans and the courts looked to Catholic teaching for ethical direction.
Citing Pope Pius XII, the judge ruled in 1976 that Quinlan’s tube could be removed. The decision favored her parents’ request, one that they deemed in keeping with their Catholic faith, but it was immediately condemned by various religious entities, including conservative bishops within the Church. Quinlan did not die until1985.
The Quinlan case was not the only one to cause medicine some serious ethical soul searching in the 1960s and 70s. Research experiments like the Tuskegee Syphilis study, where mostly poor, black sharecroppers were studied from 1942 until 1972 but not informed of their illness, outraged doctors and citizens alike. As well, the rights movements of that era required that doctors move away from the paternalistic practice of making decisions for patients, particularly women and minorities, without their being informed or giving consent.
The field of medicine was glaringly ill-equipped to wrestle with these ethical challenges. In the first half of the 20th century, ethical thought had stagnated, mired in two dead-end courses: “metaethics,” a sort of disciplinary naval-gazing; or controversial indecision, a disciplinary disagreement over how to discern right from wrong.
In 1982 ethicist Stephen Toulmin published a seminal article called “How Medicine Saved the Life of Ethics,” that described this stagnation. According to Toulmin, the discipline of ethics had two primary problems that were preventing it from any practical advancement. Ethics in the early to middle 1900s concerned itself with “questions of so-called metaethics,” how to classify issues and judgments as moral or not. Rather than “take sides on substantive ethical
questions,” ethicists chose to examine their field from within. Others in the field, who were applying ethical thought to worldly issues embraced strict dogmatic lines of practice. They “appealed either to a code of universal rules or to the authority of a religious system or teacher,” writes Toulmin. A group influenced by psychology and anthropology rejected this unwavering adherence to a strict set of rules and pointed, instead, to human diversity and the challenges of making universal judgments in a world so full of difference. They became known, pejoratively, as subjectivists or relativists. Toulmin writes that these two approaches to ethics—a focus on the principals of ethics, not its application; and an entrenched schism between those who abided a “universal and unconditional character of moral principles,” and those who did not—held the discipline of ethics at a standstill that threatened irrelevance.
A handful of ethicists, like Toulmin, who were willing to step outside their discipline’s entrenched arguments, took up the challenges medicine was facing. Bioethics—“the bastard child of philosophy and, truth be told, of theology as well,” according to bioethicist Arthur Caplan—took up medicine’s ethical challenges. Toulmin writes that this new application of ethics to medical cases allowed ethicists to work like physicians, “who have reflected deeply about the nature of clinical judgment in medicine.” He reminds us that, “in traditional case study morality, as in medical practice, the first indispensable step is to assemble a rich enough ‘case history.’” Or, we might say: with the help of the patient’s stories and medical history, create a narrative. “Until that has been done, the wise physician will suspend judgment. If he is too quick to let theoretical considerations influence his clinical analysis, they may prejudice the collection of a full and accurate case record and so distract him from what later turn out to have been crucial clues.”
Bioethics “was a field whose timing was impeccable—new problems and challenges emerged one after another in rapid succession fueled by technological advances creating a demand for somebody, anybody, to provide thoughtful input into their management,” Arthur Caplan wrote in “Done Good,” an article for the Journal of Medical Ethics in 2014. Ethicists put the stagnancy of their field behind them and confronted new ethical challenges by focusing on the needs of a medical field in flux. Bioethicists asked that long-standing theoretical, theological, and philosophical principles be weighed alongside the context of a patient’s life and case; the needs of the patient, their family and their community were considered. Personal stories and medical narratives were again as important in decision-making as traditional medical principles. “The practical decisions in ethics can never be made by appeal to ‘self-evident principles’ alone and rest rather on a clinical appreciation of the significant details characteristic of particular cases,” Toulmin wrote.
Toulmin’s claim that “medicine saved the life of ethics” has been resoundingly praised since its appearance in 1982. But it is not without detractors who find his analysis a little too simplistic. Others charge that Toulmin’s pronouncement came far too soon to be definitive. Bioethics has grown from a few academic centers in the US, like the Hastings Institute and the Kennedy Center, to become an essential force in law, medical practice, research and policy making in only a few short decades. But it is still a shifting and pulsing discipline.
Reading Toulmin, I was tempted to reverse the fields in his article’s title to ask the question, Can ethics save the life of medicine? There can be no doubt that medicine needs saving. Increasingly impersonal and troubled with ethical blind spots, medical practice today attends individual needs less than it rushes patients through a diagnostic gauntlet. Futile care, the overtreatment of patients regardless of their predicted longevity or quality of life, is crippling the humane and financial aspects of the field. The rush of daily appointments leaves little time for conversation with patients. Discussions about quality of life (or plans for death) are seldom had and physicians often aren’t trained for them. Profit-driven motives have skewed doctors’ accurate collection and analysis of patients’ case histories. As a result, doctors face crippling challenges when diagnosing patients they don’t know—in windows of fifteen minutes at a time. How do you construct a patient narrative out of nothing? And what has the field of medicine done to reach those who can’t afford health care or preventative medicine? Danielle Ofri has written, “I can’t tell you exactly when it happened, but sometime in the past two decades, the practice of medicine was insidiously morphed into the delivery of health care.” The difference between “practice of medicine” and “delivery of health care” is nothing short of a crisis in patient health.
It turns out that my query—Can ethics save the life of medicine? — is not original. In a videotaped memorial at the University of Chicago’s MacLean Center that honored the work of Toulmin, who died in 2009, a former colleague of Toulmin’s asked, “Did Ethics Really Save the Life of Medicine?” The jury, he admitted, is still very much out. And yet, there is a chance that re-centering medical practice around patient narratives could reverse medicine’s current impersonal course. New developments in medical practice and instruction hint that such a change may be taking place. Movements inside and outside the discipline of medicine have refocused on the doctor-patient relationship by encouraging longer appointment times and more attention to patient narratives. “Slow medicine,” like slow food, has caught on as a way to humanize patients, to allow their stories to better direct doctors toward good decision-making.
Rita Charon founded one of the first Narrative Medicine program in the country at Columbia University in 2000 (the masters program was established in 2009). The Columbia program overview reads, “The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice.” There are now a growing number of narrative medicine programs across the country that draw on various disciplines and aim to return patient narratives to the center of medical practice.
Because Narrative Medicine focuses on the doctor-patient relationship, it can often neglect iniquities in the broader medical system. It doesn’t address problematic structural conditions, like the pressures of profit, the inadequate number of practicing doctors, the number of patients doctors see in a given day, and the great number of citizens who never have the benefit of prevention or care. Nonetheless, it’s a hopeful new area of study and one that enhances medical education in crucial ways.
While the slow and narrative medicine movements are most likely a reaction to medicine’s current speed and hyper-clinicalized nature, not the rise of bioethics, they emphasize the role of patients’ quality of life and narrative. What bioethics, as it’s developed over the past few decades, has shown is that it has the breadth and influence to go beyond the doctor-patient relationship to address larger systemic plagues within the medical field, like access to health care, the use of experimental medications, and the equitable distribution of scarce resources, treatments, and drugs. With the ear of public policy makers, media at large, and medical schools, bioethicists have placed themselves in a position to tackle the gross disparities and injustices that characterize the contemporary health care narrative.
“To live on a day-to-day basis is insufficient for human beings; we need to transcend, transport, escape; we need meaning, understanding, and explanation; we need to see over-all patterns in our lives,” wrote Oliver Sacks in the New Yorker in 2012. Sacks, perhaps the greatest physician writer of our era, who has recently been diagnosed with terminal cancer, was opening an article about the use of mind-altering drugs (and so much more), but his point that we need to step back in order to see the patterns in our lives has very much to do with creating our own narratives, whether through conversation, storytelling (storymaking!) or reflection.
This is what is so exciting about the public’s consumption of the work of physician writers, whether it be essays by doctors like Sacks, fiction by bioethicists like Jacob Appel, or general media articles by bioethicists like Arthur Caplan. “Bioethics gained social legitimacy by not following the British analytical philosophy tradition into the ivory tower, but, rather, the Socratic tradition of engaging the public in the ‘marketplace,’” Caplan wrote in “Done Good.” After the early decades of the 20th century, when ethics and the practice of medicine institutionalized themselves, dogmatically pulling away from public discourse, medicine’s advancements and changing landscape have dragged it back. Atul Gawande, Oliver Sacks, Siddhartha Mukherjee, and other writers from the medical profession are regulars on bestseller lists, engaging millions of readers with writing that tackles the larger ethical issues we face today—and from every philosophical, theological and ethical angle. The future of patient care can only benefit.
Past “The Patient Body” columns:
Ann Neumann is a contributing editor at The Revealer and Guernica magazine and a visiting scholar at The Center for Religion and Media, NYU. Neumann‘s book, The Good Death, will be published by Beacon Press in February 2016.