Caregiving is understood by economists as a “burden,” by clinical psychologists as a “coping process,” by health-services researchers in terms of health-care costs and by physicians as a matter of clinical competency. But, for many people, caregiving is a foundational component of moral experience. It is a practice of acknowledgement, empathic imagination, witnessing, responsibility, solidarity and the most concrete forms of assistance. It is this moral aspect that makes caregivers, and at times even care-receivers, feel more “present” — and thus more fully human.
But, aside from skilled nursing, rehabilitation efforts by occupational and physical therapists, and the practical assistance of social workers and home health aides, caregiving, especially for victims of health catastrophes and end-stage conditions, has relatively little to do with the contemporary practice of medicine.
To illustrate this point, I draw on my personal experience as the caregiver for my wife, who suffers from a severe neurodegenerative disorder that has impaired her memory and motor functions, restricting her independence. I wake her up in the morning, assist her in toileting, bathing and dressing, make us breakfast and help her feed herself. I assist her in walking, placing her in a chair and getting into our car. I am with her nearly all the time to protect her from injuring herself, because she can neither see nor navigate safely on the street or in our own home.
It is disturbing to witness the deterioration of a once elegant, intellectually lively and highly independent companion of more than four decades. But our emotional reactions, from frustration and anger to sadness, have been cushioned and sublimated by our work, the long rhythm of our days together, and, above all, by the support of family and close friends. That concern and responsibility for us is as much a part of caregiving as all the mundane practices I have listed, and amounts to moral solidarity with our struggle.
I give you this personal sketch because it is the best I can do to illustrate what caregiving entails, and why it is so crucial to everyone’s life — and to the human condition more generally. Caregiving, as illustrated by our case, includes what happens when hope and consolation are abandoned, when theodicy ends and when all there is to do is to be present with the sufferer, sharing his or her suffering by simply — and usually silently — being there.
In medical schools, however, the curriculum in both the basic science and clinical apprenticeship years places the greatest emphasis on understanding the biology of disease processes and high-technology treatments. The illness experience gets less and less pedagogic attention as the student progresses from classroom to inpatient ward and clinic.
In the broader system of healthcare, students can readily discern that medicine largely leaves the practical and emotional tasks of caregiving to nurses, social workers and the patient and his or her network of support. The structure of service delivery and the funding of health services work to discourage professionals from the art of caregiving, and can, in fact, undermine the practitioner’s efforts.
The result is moral impoverishment of the practice of medicine. For medical anthropologists, people everywhere live in the flow of interpersonal interactions in local worlds — social networks, families, institutions and communities. That is to say, experience, viewed as the flow of words, movements and emotions between us, is not only local, but also inherently moral, because living our lives is about animating and enacting values.
For patients and families faced with health catastrophes and serious chronic medical conditions, the experience of suffering is not just a personal one, but is strongly influenced by cultural and historical changes in the processes that contribute to moral life being distinctive in different eras and societies.
Faced with a threat of pain, disfigurement, loss of function and serious disability, individuals and families reframe the experience of suffering within their local moral world by remaking meanings, emotions and values via ethical, religious and aesthetic activities.
Doctors are no different from laypersons in drawing on personal and cultural resources — involving imagination, responsibility, sensibility, insight and communication — to accomplish their caregiving.
And what they engage in is an amalgam of ethical, aesthetic, religious, and practical action. The physician’s art — now so circumscribed by bureaucratic, political and economic forces — turns on both the professionalization of these inherently human resources and the impact of their routine use on the doctor’ own moral life.
To prepare for a career of caregiving, medical students and young doctors clearly require something besides scientific and technological training. Indeed, current professional education can even be seen as enabling the physician as a technical expert, while disabling him or her as a caregiver.
To overcome this trend, we must incorporate the humanities into medical training as a means of rekindling and deepening those human experiences of imagination and commitment that are essential for caregiving, and resisting the bureaucratization of values and emotional responses that causes failure in the physician’s art.
In essence, the practitioner must come to feel that the art of caregiving is as much at stake as the science and technology of diagnosis and treatment.
In my view, what is needed is reform of the very culture of contemporary biomedicine.
We must train students and practitioners in critical self-reflection on that which limits their caregiving; in strategies and techniques aimed at opening a space for the moral acts of caregiving; and in the most concrete and practical acts of assistance, so that they never forget what caregiving actually means.
Arthur Kleinman is a professor of medical anthropology at Harvard University.
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