How the Human Face of Medicine is Too Often Missing
Arthur Kleinman Locates Where Love Meets Health Care
An elderly white-haired woman, her beauty still apparent in her fine features, came into the Stanford Hospital clinic. I remember how she turned red with shame as she revealed to me that she had acquired syphilis during World War I from a sexual encounter with a soldier who had recently returned from the battlefield in France. The only treatment available in the days before penicillin was Salvarsan, an arsenic compound that had had terrible side effects on her body.
The liver damage she suffered had turned her skin yellow. With her discolored skin, her fear that the disease would affect her brain, and because she mistakenly feared she could still pass syphilis on to others, this woman had never again allowed herself to have a sexual relationship. She kept her highly stigmatized condition a secret. Determined that she could never marry or have children, she even distanced herself from her own family, who she believed would have rejected her if they discovered her situation.
My responsibility had only been to take her medical history and present it to the attending physician, a red-faced Friar Tuck-like figure who winked conspiratorially at me and said that I had just heard a bit of medical history about the downside of the first “magic bullet” chemotherapy.
But I still felt the humiliation and regret in that woman’s tragic life story. So each week when she returned for treatments for her liver and neurological problems, she and I would talk in great detail about her past, the losses she had experienced, and her belief that the secret she had kept so devotedly had itself, more than the physical damage, ruined her life. I came to understand that our sessions meant something more to her than the various symptomatic treatments did. She told me that I was the first person to hear her full story. I learned to hear the hurt behind her words, and to recognize her heroism for what she had had to bear.
I was coming to understand how the ability to enter in and work through ordinary experience itself opened a window on life and its meanings. And how the tone of a conversation, if one worked hard enough to hear it, could be part of care. When I explained to her that it was our final session, because I was rotating to another clinical specialty, she cried and whispered that our sessions had helped her to feel alive and both physically and “spiritually” better. I had discovered that meanings could heal—without being tutored or even realizing that what I was doing itself was a form of therapy.
The initial patient-doctor interaction, the physical examination, the follow‑up visits to deal with laboratory findings, differential diagnoses, and treatment—all can be carried out in such a way as to be therapeutic. And it is the patient as much as the doctor who makes the relationship work. That lesson has lasted and been proved true over the entire course of my career.
It was also during this period of my medical training that I began to see, through my patients, how poverty grinds down lives until they break. The fact that I was born to wealth and raised without ever concerning myself about the cost of living didn’t mean that I was ignorant about poverty in the abstract. I had read enough about the Dust Bowl and heard enough about the Great Depression to know how much poverty mattered. My turn to the left in college, fueled in part by reading revolutionary socialists, gave me the theoretical understanding of, and passion for, social justice. But that understanding didn’t become concrete until I witnessed the effect of poverty on my patients’ lives, their social suffering.
In the pediatric clinic at the Santa Clara Valley County Hospital, I met migrant Mexican American farmworker mothers and their malnourished children, and felt the outrage well up inside me. In such a rich part of such a rich country, how could there be children whose parents couldn’t afford food, including some of the very foods they harvested for the tables of middle-class Americans?
The pediatricians prescribed medications for the parasites and infections that resulted from the children’s ravaged immune systems and their constant exposure to polluted water and high doses of pesticides. But what they needed to prescribe—and what they knew but were prohibited from doing by professional and institutional policy—was food and a less dangerous work environment.
In the emergency room, I spoke with elderly men who had been left behind by working-class families who had moved to other parts of the country in search of opportunity. These men were emaciated, often living on less than a dollar a day. They were unable to afford dental care, so their mouths were like ruins. Medicare and Medicaid were still years away at the time, so the men couldn’t pay for even the most basic health care. They presented with all the classic chronic conditions of poverty: tuberculosis, infected skin wounds that had become large abscesses, and even untreated cancers, including one memorable case of a huge ulcerating tumor of the face that was no longer treatable.
As terrible as their physical conditions were, it was their shattered spirits that hit me hardest. I remember one elderly gentleman who couldn’t or wouldn’t look me in the eye. He mumbled that he was ashamed of his failing health, and recounted how he had poured what little money he had down his throat in the form of cheap wine. He believed that he was “not worthy”—I can still hear the words—of being treated like a decent human being. It turned out he was only in his late forties, even though he looked thirty years older.
A Spanish-speaking farmworker complained of pain in his spine, while explaining that he had to work in the fields with a hoe that was too short to allow him to stand straight as he worked and relieve the pain from bending his back all day. He came into the clinic seeking an affordable pain medication. Stupidly, I asked the interpreter to find out why the man didn’t quit his job and find some other kind of work. The interpreter just looked at me without speaking, eye to eye, until the resounding silence forced me to apologize.
These experiences stayed with me. I was discovering that the social face of medicine mattered just as much as any clinical know-how I gained. The clinical years of medical school fostered in me both a rising awareness of human suffering and an appreciation of the inadequacy of medical responses to the seemingly unlimited varieties of that suffering.
The summer after my second year of medical school, I rotated through a rehabilitation medicine service at New York University’s well-known Rusk Institute, where I could observe adolescents and young adults with spinal cord injuries undergoing rehabilitation. I was struck that for many of these patients, progress was in the hands of the physical therapists, more so than with the physicians, who often had little to offer in the way of medical treatment. The therapists coached patients with extremely limited movement to maximize what functions they still possessed.
I learned that often, even a very small improvement in function can represent the difference between getting around and doing things independently, or giving up and retreating into complete incapacity and despair. These remarkable physical therapists plotted the parameters of success into the training programs so that even minimal change became a real achievement. They pushed, they supported, they cheered, even in the face of setbacks or failure. They entered their patients’ private space and dwelled there, encouraging and remotivating those who had lost hope, moving patients out of a demoralized state of inactivity into the active, if greatly difficult, work of coping.The caregiver must strive to get inside the place where the care recipient exists, no matter how desolate and hopeless that place feels.
Years later I was assigned to lead a group therapy session for a dozen teens and young adults who had been rendered paraplegic or quadriplegic by accidents. They were all early in their experience of disability and had not had access to the kind of high-level rehabilitation services I had observed at Rusk. These patients were uniformly demoralized; still, I tried to coax them out of their negativity, naively attempting to persuade them that in time they would make peace with their disability and that neither depression nor suicide were reasonable options.
Of course, they would have none of it, each one in turn declaring that indeed suicide was the only option, since they could not regain a normal body. It is with some shame that I recall their outrage, how they angrily let me know that I could never know, never understand their situation, because I did not share it. The lesson was harsh. I had foolishly tried to impose an idea of care from the outside, rather than connecting with the inner emotional lives of the recipients of care by just being there with them in their tough daily experience and struggling through the work with them.
The moral as well as the practical wisdom is that caregiving must be driven by the deepest needs of those cared for, care recipients—their pain, their anguish, their fears. The caregiver must strive to get inside the place where the care recipient exists, no matter how desolate and hopeless that place feels. Patients need to know that they will not be left alone or behind, and that you, the caregiver, are also willing to reveal your own vulnerability. It means thinking of hope as a work in progress, built and rebuilt through constant tinkering with the therapeutic regimen as the caregiver joins and also endures in the care recipient’s struggle.
At the same time as I was learning the importance of making personal and emotional contact with patients, my early visits to patients’ homes helped me feel my way forward among the material and personal things that make each person’s experience of illness and care unique.
The first such visit was to the home of a young woman who was addicted to barbiturates. I first met her in a hospital clinic, where she was dismissed as “drug seeking” and noncompliant—a potentially difficult patient, who seemed to have little insight into her condition. My colleagues at the clinic regarded her as unreliable and uninterested in remedying her situation. The professor of preventive medicine thought I should follow up with her at home because she had such a poor record of keeping hospital appointments.
I drove to a miserable part of East Palo Alto that I hadn’t even known existed, where this woman had a small apartment in a broken-down two-story building. I was surprised to see three small children living there with her. I’m not sure what I expected to find, but the apartment was clean and clearly well kept, and the children were nicely dressed and running around happily in constant play. The patient welcomed me warmly, and spoke easily and openly.
Very quickly, the circumstances of her life became clear: she was a hardworking cleaner in the local middle school, and she also worked on the weekend cleaning houses on the wealthy side of town. Twice divorced, she had her small children enrolled in preschool and second grade. Virtually every waking moment of her life was devoted to work or to the apparently loving care of her children. Her barbiturate dependency resulted from problems sleeping. Rather than a difficult and demanding patient, the friendly woman I encountered in her home impressed me as a model of a self-reliant individual facing a challenging financial reality who saw the proper care of her children as her sole priority.
I was shocked by the discrepancy between the way she was seen in the clinic and the way I saw her at home. Ever since, I have remained suspicious of clinical evaluations of individuals and families labeled as burdens on the health care system, unless those assessments include home visits. Too often, those descriptions represent the biases, frustrations, and blindness of clinicians to the context of their patients’ human condition.
The vast majority of American medical schools today fail to provide students with adequate opportunity to observe or participate in home health care. (In the past, there were a small number, like Stanford, that did so as an elective.) Yet it is in their own homes that we see how people actually live, how they handle their illnesses or those of others, and why they might pose “problems” for health care agencies. Leiden University in the Netherlands,
Rather than delivering traditional medical care, the students spend a week washing, cleaning, cooking, as well as performing such basic care activities as bathing, dressing, feeding, and ambulating the sick person. The goal is for the students to learn firsthand how illness is experienced and treated in the family and network, and what it feels like to join the efforts. I spoke to a number of Leiden’s former students when I was invited to give a school-wide lecture there. The consensus was that this experience grounds students in family care so firmly that they are much better prepared to undertake primary care activities and much more likely to ask salient questions about family, means, caregiving, and needs.
Of course, some students inevitably find the experience distasteful and discover they are not suited to this intensity of human connection and care, but better they learn that as students, with time to change direction, than as working doctors who are uncomfortable with clinical intimacy and the realities of the patient’s world and needs.
From The Soul of Care by Arthur Kleinman, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright (C) 2019 by Arthur Kleinman.