An Essay

Distinction between illness (as patients experience it) and disease (as physicians diagnose, treat, and understand it).

The usefulness of this conceptual divide began to seem inadequate to me, just as I was becoming dismayed by the way it was being applied in medical education and practice. Meant to enrich the living art of medical care, the distinction and the philosophy it reflected had instead been co-opted and compartmentalized as a discrete element of a rote medical science.

Back in the early 1970s, at a time of rapid growth of high technology, reductionism, and bureaucracy in medicine, there had been rising anxiety that clinicians weren't treating patients as individuals whose lives and disorders had a richly human background and social context. I began writing articles and books, drawing on my work as a consultation–liaison psychiatrist and cross-cultural researcher, on how physicians' narrow focus on diagnosis and treatment led them to miss or intentionally exclude the centrality of the patient's experience. I argued that the patient and family's anxious and burdensome experience of illness and the clinician's intense quest in diagnosing and treating disease were two substantially different kinds of things.1 The former was a struggle to bear, interpret, and respond to symptoms; the latter, the application of a particular medical system's classification of disease entities and enactment of prototypical treatment interventions. Calling for renewed attention to patients' lived experience of symptoms, I emphasized the illness–disease distinction and proposed that by eliciting lay explanatory models through eight questions, clinicians could understand illness experiences and so provide care as well as cure.2

Those questions — beginning with “What do you call your problem?,” “What do you think is its cause?,” “How does it affect your body?,” and “What do you most fear about it and the treatment?” — were meant to open conversations by bringing patients' illness narratives into the patient–doctor relationship, converting a rather one-sided interaction into a richer, more egalitarian one. Patients' and physicians' distinctive explanatory models reflected cultural orientations of the society, the profession, and the institution that authorized a certain kind of clinical reality, which would shape the patient's treatment and the evaluation of outcomes.

This clinical method became widely taught, especially as a model for delivering effective, culturally informed care to ethnic and immigrant minority groups.3 But by the 1990s, it became clear that the illness–disease distinction was being used in a way that undermined exactly the sort of understanding it was meant to foster. Eliciting the explanatory model had become a conversation stopper, a mechanical task that assumed that dynamic meanings could be fixed as a single, unchanging, material thing in the patient's record. On clinical rounds, trainees presenting cases treated the patient's explanatory model as one more concrete parameter, like the CBC or electrolytes. What was meant to humanize care by providing room for lay voices and practices appeared instead to be reducing complex lives to limiting, biased stereotypes. I hadn't reckoned with people's capacity to routinize and objectify others' suffering and fears in the quest to render their tasks manageable.

To make matters worse, certain aficionados fetishized illness narratives per se as symbols and stories, divorcing meaning from the economic, emotional, and relational context of the lived experience of suffering, rather than using storytelling to make experience available for reflection and communication. Moreover, the method seemed to assume that culture was relevant only to laypersons, not professionals, and it got caught up in a cultural-competence movement that reified esoteric cultural beliefs and ethnic stereotypes.3 That had not been my point. The way illness was being separated from disease also risked splitting physiology from the inner self and interpersonal relations — an untenable division, under the integrative biosocial framework I wanted to advance.

When my wife became ill, her experience of illness and mine of caring for her added further complexity to my understanding: it clarified for me the moral processes central to caregiving.4,5 Real things were at stake for us. What mattered most — work, family, our lives together, our fears and aspirations — became central to the giving and receiving of care. And caregiving, I learned, was about not only triage and tinkering with medication, but also being taken up in the mundane, burdensome, yet meaning-infused practices of assisting with activities of daily living — bathing, toileting, feeding, ambulating — as much as protecting, supporting, and just being there. Mundane practices created and sustained meaning, not the other way around. The things at stake were powerfully emotional and moral. Not just ours alone, they influenced our clinical relationships. In turn, we recognized that what mattered most to clinicians — in emotional and moral, not just cognitive, terms — was not necessarily the same as what mattered to us. Those contrasting stakes came to define our journey and that of the clinicians we encountered. If they'd been better equipped to bridge this divide, I think our difficult journey would have been eased.

Nor was our moral experience of illness and caregiving at all adequately mapped by ethicists' concerns with high-level principles or the ideal virtues of the practitioner. It was a messy mix of emotions, values, and relationships that was in conflict both within and without. Illness and caregiving as moral experience turned on processes of reciprocal exchange. Patient and caregiver reciprocated affirmation, acknowledgment, emotion, and presence (i.e., lives animated by meaning) as much as they exchanged information.4,5

Looking at medicine this way reinforced my belief that the structure and demands of medical schools and hospitals create obstacles to caregiving. How to revivify caregiving in medicine became the issue. Teaching about illness experiences remains important. Yet the moral–emotional core of those experiences deserves greater primacy — as does the social suffering that affects everyone, but especially marginalized people already injured by poverty, isolation, and other forms of structural violence.

Another orienting issue is the lived relationship between patient (and family) and clinician. Here the anthropological model of exchange based in reciprocity can counterbalance the market model's infiltration into even the most intimate parts of health care. The anthropological perspective suggests that care resembles gift exchange between individuals whose relationship to each other really matters. Stories and meanings are exchanged, but also the raw experience of responsibility and emotional sensibility. Over time, caregiving changes the moral life of both caregiver and care receiver. Ultimately, caregiving is about doing good for others, and doing good in the world, as naive as it may sound, is what medicine is really about. That's what draws people to its practice, even if it's also about technology, biomedical science, and markets. That moral core of medicine may seem abstract, until you see health professionals passionately struggling to be useful, compassionate, responsive, and responsible while working with the indifference of bureaucratic rules, the cold counting and costing of institutional audits, and hard-to-balance personal demands on their time and concern.

Modern medical practice's greatest challenge may be finding a way to keep caregiving central to health care. That way will turn on structural and economic developments, technologies, and therapeutic models, but also on the importance that professionals ascribe to patients' deep experience and to such enduring moral practices of caring as the laying on of hands, the expression of kindness, the enactment of decency, and the commitment to presence — being there for those who need them. This is the embodied wisdom medical students need to learn and we all must remember. It is the lesson for the art of living and the art of medical practice that emerges from my 40 years of rethinking and reliving this subject.

Arthur Kleinman, M.D.

N Engl J Med 2013; 368:1376-1377April 11, 2013DOI: 10.1056/NEJMp1300678