Illness as a Moral Experience

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.

New England Journal of Medicine 2013; 368: 1376-1377