The Lost Art of Caring

I began to read “The Lost Art of Caring” on an airplane. Having left my quadriplegic, brain-damaged husband at home with a home care attendant, I was on my way to rural upstate New York to take my mother, who had been recently diagnosed with advanced colon cancer, to the doctor for a follow-up visit. If caring has really been lost, I thought, a fair amount of it seems to have turned up in my corner. At the doctor’s office, the Iraqi-American surgeon spoke gently and directly to my older Jewish mother, answered my questions forthrightly, and promised both of us that he was always available if we needed him. Again, I wondered: Is the art of caring really lost? Or has it just been overshadowed by probably more-numerous and certainly more-memorable examples of indifference, insensitivity, and callousness? The editors state that they chose the term “caring” rather than “care” or “caregiving” to “focus on the humane and palliative aspects of health care that contribute to the individual’s quality of life.” They define the elements of caring as “compassion, listening, empathy, counseling, support, and giving of time and oneself.” Although this distinction sounds appealing at first, it soon loses conceptual rigor; even the various authors use the term in different ways. “Caring” in health care rarely exists independently of “care” or “caregiving.” Even the most inconsequential interaction between a healthcare professional or paraprofessional and a patient or family member conveys a “caring” or “uncaring” attitude. Cluff and Binstock believe that caring has been so devalued and marginalized in the practice and politics of health care that it can justifiably be called “lost,” and they have assembled a diverse collection of essays to make their case. They divide the contributions, all by distinguished authors, into three sections: caring and the population in need of it, the provision of caring, and assessments of caring. Looking at the contents in another framework, the essays can loosely be divided into two types, corresponding to the professional backgrounds of the editors. Leighton E. Cluff is a physician and former president of the Robert Wood Johnson Foundation. One group of essays—notably those by Daniel Callahan, Eric J. Cassell, Joel D. Howell, and Mathy Mezey and Claire Fagin—eloquently mourn the loss of the traditional physician-patient or nurse-patient relationship. Robert H. Binstock is a political scientist and professor of aging, health, and society at Case Western Reserve University. The second group of essays—for example, by Robyn I. Stone, Linda K. George, and Binstock— describe the panoply of bureaucracies, programs, and politics that have imposed technocratic values of efficiency, predictability, and frugality on the human interactions between people in need of caring and their carers. In addition, the book contains a helpful background essay by A. E. Benjamin and Leighton Cluff on the demography of people with chronic illness and disabilities and a valuable essay by the late Alvan R. Feinstein on ways to evaluate the success of caring. The subtitle of the book is “A Challenge to Health Professionals, Families, Communities, and Society.” Although several authors mention in passing that families provide most of the caring (and, they might have pointed out, the caregiving as well) for disabled and chronically ill people, only one chapter takes up families’ challenges directly. This chapter, by Burton V. Reifler and Nancy J. Cox, focuses on a special population of people with severe and persistent mental illness. In this group they include people with Alzheimer’s disease and dementia, a questionable linkage, given the many differences in the populations and needs for care. Family caregivers of the seriously mentally ill endure or are rewarded with “endless caring,” and the authors make their needs clear. Nevertheless, making one part of the family caregiving spectrum stand for the whole leaves out much of the story. Stone’s chapter on homeand community-based care begins with “the bold truth that home care and family care are not synonymous with caring.” She clearly understands some of the problems faced by family caregivers, yet one might conclude from this chapter that family caregivers are, albeit unintentionally, poor substitutes for paid carers. In fact, the editors’ summary states, “As Robyn Stone notes . . . family care is . . . often filled with conflict and tension, even under the best of circumstances. . . . Elder abuse and neglect by a family caregiver is far from uncommon.” True enough, although the same might be said From the Families and Health Care Project, United Hospital Fund, New York, New York.