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opinion

Neal Cresswell

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 acknowledgment, 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, Joan Kleinman, 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.

I read the newspaper and books to her, explain stories on the TV and select music for her to listen to, and make telephone calls for her to our children and grandchildren. I prepare lunch and dinner and help her eat; and I do all the things required to get her ready to go to bed at night.

Of course, our children, my mother, my brother and others call and help when they can, and several times a week we are assisted by a professional home health-care helper who does the washing, cooks several meals and spends the daytime hours with her.

Joan herself does as much as she is able to do. She rarely complains and, except for an occasional agitation that is beyond her control, she struggles to enjoy life and usually succeeds in doing so. In this and several even more crucial ways she is her own caregiver. She keeps up her part in our conversations, emotional exchanges and moral relationship.

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, the support of family and close friends. That concern and responsibility for us are as much a part of caregiving as all the mundane practices I have listed, and amount to moral solidarity with our struggle.

I give 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.

THEORY AND REALITY

What is the status of caregiving for health catastrophes and other serious conditions in medicine today? While medical educators say it is still central to what it means to be a physician and point to courses and practitioners who teach the art of caregiving to students, the on-the-ground reality is much more uncertain and fragile.

Most physicians, apart from primary-care providers, do little in the way of hands-on caregiving. Hospice doctors are caregivers; physicians who routinely deal with the end of life, such as oncologists and cardiologists and nephrologists and gerontologists, are surrounded by caregiving opportunities, yet few take part in its nitty-gritty - leaving the practical assistance and emotional tasks to nurses, social workers and the patient and his or her network of support.

In medical school, the curriculum in both basic science and the clinical-apprenticeship years places the greatest emphasis on understanding 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 health care, students can all too readily discern that medicine largely leaves caregiving to others. Those others include nurses, whose professional science has made caregiving a central element of knowledge production and training.

This knowledge is largely unavailable to young physicians and medical students. Its association with a lower-status profession may even confer upon it something of a stigmatized status. Notably, caregiving still has a strong gender bias; most caregivers are women. Historically and cross-culturally, this is even more impressively true. What is particularly true of our time and especially in my own society is that 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. Part of the mistrust of doctors is the growing sense that they seem uninterested in caregiving.

The late, great physician-educator Walsh McDermott of Cornell University once proposed that the caregiving and technological roles of the doctor might be separated, and the former dropped from medicine as a burdensome and poorly cultivated anachronism - probably saying this tongue-in-cheek to stimulate discussion of how to strengthen caregiving in the curriculum.

If we honestly look at today's medicine, we must come away with an accumulating sense that caregiving is at best inadequately taught and supported among students and physicians, and at worst is a hollow skill that has been emptied of content, commitment and competence. It is a vestigial component of medical training and practice, which occupies a position in the profession as marginal as clinical experience has in the age of "evidence-based" practice.

Physicians should ask themselves what serious effort has been made in determining and operationalizing the knowledge needed to provide good care? What time has been allotted for acquiring this skill in medical school and residency training? For example, do students get placed in the homes of victims of health catastrophes, so that they actually experience caregiving? What has been done to evaluate future doctors' skills in this respect? How often is assessment of caregiving skills taken as seriously as assessment of basic science and clinical knowledge? Has medicine turned its back on the medical art and the thousands of years of humanistic approaches to medical practice?

The current state of affairs is a 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 among 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.

WHERE CAREGIVING BEGINS

What is caregiving for physicians and what is the knowledge base from which it is to be practised and taught?

Boiling down a variety of studies of the frail elderly, dementia and terminal conditions, for example, we can say that caregiving begins with the clinical ethical act of acknowledging the situation of the sufferer, affirming his or her efforts and those of family and friends to respond to pain and impairment, and demonstrating emotional and moral solidarity with those efforts.

It moves on to involve the physician in pain management, symptom relief, treatment of other "intercurrent" diseases (such as depressive disorder) that may arise during the first disease, and judicious management of the use of pertinent technology and control of unnecessary or futile interventions. It includes working within a network of advisers (legal, financial, religious), other health professionals (such as physical therapists, occupational therapists, nurses, social workers and home health-care assistants), and family and network caregivers.

It often involves advising on appropriate use of hospital and home health-care technology. And it means spending real time with patients, empathically listening to their illness narratives, eliciting and responding to their explanatory models, and engaging the psychosocial coping processes involved in enduring or ending life.

Managing the process of dying and being a presence at death and assisting, insofar as it is wanted, with bereavement are also part of caregiving. These involve moral, affective and meaning-making activities that we have learned much more about in recent years. Included here too is self-management of the physician's own emotional and moral responses, which may at times require attention to his or her own ethical, religious and aesthetic needs.

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's own moral life.

ENABLING THE PHYSICIAN

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 professor of medical anthropology at Harvard University and author of What Really Matters: Living a Moral Life Amidst Uncertainty.

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