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BOOK REVIEW |
Professor Emeritus of Epidemiology and Biostatistics Case Western Reserve University School of Medicine Cleveland OH 44106
A Few Months to Live: Different Paths to Life's End, by Jana Staton, Roger Shuy, and Ira Byock. Georgetown University Press, Washington, DC, 2001, 341 pp., $70.00 (cloth), $26.95 (paper).
Dying at Home: A Family Guide for Caregiving, by Andrea Sankar. Johns Hopkins University Press, Baltimore, MD, 2000, 298 pp., $45.00 (cloth), $16.95 (paper).
Men as Caregivers: Theory, Research, and Service Implications, edited by Betty J. Kramer and Edward H. Thompson, Jr. Springer Publishing Company, New York, 2002, 408 pp., $56.95 (cloth).
Those of us who are elderly, chronically ill, or dying, when we come to need care, usually prefer to receive it in our own homes, provided by familiar people. Because this is not always possible, we continue to need nursing homes, which furnish what may often be an inferior alternative. But, for the great majority of chronically ill and disabled persons—75–80% by most estimates—family or friends, with very limited public assistance, provide continuing care in the United States today. Total reported expenditures for home health care in 2001 were $33.2 billion, or 2.3% of all health care spending, which amounted to a third of what was spent on nursing home care and only 6.1% of expenditures for hospital care (Levit et al., 2003). Private expenditures for home care—those that have come to the attention of reporting agencies—amounted to only a quarter of the payments from public sources, but, because few out-of-pocket expenses are reimbursable, this is undoubtedly an underestimate.
The public part of the cost of long-term care is perceived as a rising burden on state and federal governments, but the lion's share is actually borne by informal caregivers. According to the book by Staton, Shuy, and Byock reviewed in this essay, informal family caregiving is estimated to be worth $196 billion annually, greater than the costs of formal home care and nursing home care combined (p. xiii). But the cost cannot be counted in dollars alone. Virtually unseen by politicians and the public, men and women who are caregivers often sacrifice not only income, but time, jobs, career opportunities, individual interests and, sometimes, their own mental health to carry out what they accept as a personal responsibility. Such costly acts of mercy can also bring rewards, including a sense of closure, social approval, and, especially, true personal and spiritual satisfaction.
Three new books cast light on this growing but neglected issue: One of them deals with the practicalities of managing a terminal illness at home, one with the important but largely unrecognized contribution of men as caregivers, and one with the actual experiences of people who have died at home and their caregivers in a semi-rural western community.
Dying at Home: A Family Guide for Caregiving, by Andrea Sankar, is an excellent book. It is a much-needed handbook, both for individuals who choose to end their lives in this way and for those who must give up a great deal to make death at home possible for their loved ones. It is a single-authored volume by a medical anthropologist and gerontologist. Sankar gives evidence of intimate acquaintance with her subject, acquired as director of the Medical Anthropology Program at Wayne State University, by having worked as member of a home care team while she was a graduate student, by conducting research interviews with dying people and their families, and through personal experiences in her own family. Her warm and supportive nature shines through, in sensitive writing, and in the reassuring thoroughness with which she covers all the important questions that can make a lone caregiver anxious and unsure.
The titles of some of the chapters convey the spirit of the book: "Taking the Patient Home to Die"; "Strangers in the Home: The Use of Formal Support"; "The Well-Being of the Caregiver"; "Demystifying Death"; and "After Death." The text is supplemented by six appendices—a long one on "Tasks and Problems of Caregiving" and the rest on practical topics such as additional resources, pain medications, HIV, and the model Dignified Death Act of Michigan. Nothing is too trivial or too embarrassing to discuss. Spiritual support, sexuality, hospice, and bereavement counseling are all accepted as natural parts of the experience.
Sankar serves, like Dante's Virgil, as an expert guide to those who choose their path away from the land of the living. In the words of a loving wife who recently saw her husband through a difficult terminal illness, this is "a tender and practical book." It deserves a place on the bookshelf and in the kit bag of every professional and nonprofessional caregiver, along with a similar volume, The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses and Memory Loss in Later Life (Mace & Rabins, 1999), which has for years been recognized as an essential publication for caregivers.
Men as Caregivers: Theory, Research, and Service Implications focuses attention on an aspect of long-term care that is frequently overlooked. This is a co-edited, loosely coordinated collection of scholarly chapters of varying quality. The editors are Betty J. Kramer, an associate professor of social work at the University of Wisconsin–Madison and Edward H. Thompson, Jr., professor of sociology at Holy Cross College. The 24 authors are predominantly sociologists and social work experts, but also include 3 nurses (although there are no physicians among the authors).
Two introductory chapters by the editors set the tone. The first, by Kramer, presents data showing that the involvement of men in providing care is not only important, but increasingly so. Men now provide about 30% of care (41–53% in cases of AIDS), Strong demographic trends, such as smaller and more divided families and more women working, will continue to put the burden of care more frequently on men. As many as a third of elderly men are engaged in caregiving. In the second chapter, Thompson asks the question, "What's unique about men's caregiving?" He addresses stereotypes by observing that caring, compassion, empathy, and sensitivity are not traits specific to women. Men, however, are more likely to take a task-oriented approach, to be better managers, to experience less distress (although women are more likely to complain!), and to find time for themselves, achieving a different balance between "caring for" and "caring about."
The chapter on methodological issues, by a psychologist and a psychiatrist, finds only 19 relevant studies in 8 years prior to publication, and the authors appropriately call for more and better research, particularly longitudinal studies. Six chapters present new empirical evidence, mainly in the form of interviews, using relatively small samples and qualitative data. These include studies of AIDS victims and their caregivers (two chapters), husband-son pairs, brother-sibling pairs, fathers of adult mentally retarded children, and parents of schizophrenic children. The AIDS chapters are among the most informative in the book.
Several chapters, though not the most rewarding, are devoted to theoretical speculation and review of the literature. Unfortunately, the writing in these and some other chapters tends to be marred by sociological and psychological jargon ("gendered," "bifurcated spheres," and the like) that makes them difficult reading for those not accustomed to it.
On the whole, this book alerts those involved in long-term care to important changes in the structure and process of the task, and one can readily agree with the plea for more and better research.
Important aspects of male participation in this growing field, however, are not mentioned. For instance, consider the background of large changes in employment in a society increasingly characterized by service rather than manufacturing jobs. How significant is it that more men are entering nursing at the same time that many more women are becoming doctors? How many men function now as "house husbands," and are they more likely to become caregivers? What is the economic effect of the sacrifices that caregivers of both genders are making? What are the implications for public policy? Should we be considering federal subsidies for caregivers in place of more expensive support of the less desirable nursing home alternative that now threatens to break state budgets?
A Few Months to Live: Different Paths to Life's End is a detailed study of the final days of nine individuals and the current and subsequent experiences of their friends and families. The interviews reported here are from a pilot study for The Missoula Demonstration Project. This is planned as a long-term (15–20 years), community-based series of sequential cross-sectional studies using qualitative ethnographic methods, aimed at understanding end-of-life issues. The community under study is Missoula County, a semi-rural part of western Montana, and all three of the authors are connected with Montana. Dr. Staton is a psychologist, educational researcher, and family therapist who works for the state. Dr. Shuy is a sociolinguist and distinguished research professor emeritus at Georgetown University, now resident in Montana. And Dr. Byock is a physician and research professor in philosophy and practical ethics at the University of Montana.
A Few Months to Live has several strengths. It is that rare bird, a longitudinal study that covers the bereavement period as well as the process of dying. The nine subjects in the study were very different from one another and each is thoroughly characterized in terms of situation, personality, lifestyle, and other human qualities. Six were women, with ages ranging from late 30s to late 80s, and all were of working- or middle-class backgrounds. Their terminal illnesses were cancer, pulmonary or cardiovascular disease and, in one case, "old age."
Some aspects of the study are unique. Western Montana, its scenery, its people and its animals dominate much of what takes place. For some of the individuals the environment presented problems of transportation or isolation, while, for a few, the mountains were the most cherished part of life and the most difficult to leave through death. Two of the subjects had Native American blood, and for one in particular this heritage was an important source of strength and support.
In all cases the interviewers explored the question of spirituality, whether it was central to the experience or not. The availability of hospice services was taken for granted, and, when it occurred, the moment of "being declared hospice" was understood to signal a change from sickness to approaching death. A few deaths took place in Hospice House (a special kind of institutional setting) rather than at home, and most of the subjects seemed to be acquainted with the concept of hospice.
There are weaknesses in this study. The methods are not thoroughly described; in particular, sample selection, the interviewing process, and data analysis are only sketchily portrayed. Instead of presenting each case in detail, the authors made a decision to break up the rich interview material into chapters on general topics such as communication, attitudes, activities, personal growth, meaning and spirituality, and memorials. Each chapter is plentifully illustrated by quotations from the interviews, which are the liveliest feature of the book. Unfortunately one consequence of this style of organization is a choppiness that interrupts the individual narratives and results in repetition of anecdotes.
The authors, as ethnographers, identify a "subculture of dying." To be sure, they cite some universal characteristics of the experience of gradual dying, including "a shrinking social network," a need for support, a narrowing of perception, loss of mobility and control, and often, though not always, a turning to "communion with a larger whole." But the conclusion that these experiences constitute a true subculture is not convincing, at least to me, coming from a medical background. What stands out instead is diversity. Can we accept that two people such as a 46-year-old woman who turned warmly to her Native American relatives and customs as she was dying and an 80-year-old Caucasian retired plumber who never went to church and who avoided speaking of dying can be characterized as sharing the same subculture? Nonetheless, this book is valuable for the convincing detail it gives about the experience of death for some real and recognizable people in what is, for most of us, an unfamiliar setting.
What else can we learn from these books? For one thing, all three look upon hospice care, which did not exist in the United States before 1971, as a usual, even essential part of modern care of the dying. Many of those who campaigned for establishing and, ultimately, for government support of hospice services were not professionals but ordinary citizens who felt the need of a kind of care at the end of life that hospitals and nursing homes were failing to provide. Thus the worldwide hospice movement, which has developed remarkably quickly, can be seen as an expression of the same fundamental urges to take care of one's own, to minimize institutional care, and to seek help when resources of energy and spirit begin to fail that have motivated the men and women described in these publications.
Finally, just as hospice is achieving acceptance as something akin to a social right, perhaps we can look forward to the day when public support will also be provided for the legions of citizens who now quietly provide home care for their loved ones, often at great personal expense and with meager public support.
References
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