Sharon R. Kaufman

Illness, biography, and the interpretation of self following a stroke

Abstract Drawing on case material from interviews with a 65-year-old woman who had suffered a stroke, this article explores the concept of biography as both knowledge of the self and as an expression of part of the self that needs attention following serious illness. Using a phenomenological approach, the kinds of bio-graphical work that individuals define and face as they recover from major illness are elucidated. The goal is to explore the consequences of a stroke for biographical issues that emerge in later life.

The social construction of frailty: An anthropological perspective

Abstract This article proposes to broaden the discussion of frailty beyond instrumental definitions by exploring its socio-cultural sources and dimensions in American culture. It is based on an ongoing study of increased dependence among community-living elderly over the age of 80. The primary research goal was to investigate ways in which frailty is defined, framed, and understood by older persons, their family members, and their health care providers in the context of a multidisciplinary geriatric assessment service. I argue that frailty is socially produced in response to cultural discourses about surveillance and individualism. I suggest that frailty be conceived as an adaptational process that emerges and is fully articulated during the health care encounter.

Stroke: Health care on the periphery

A study of decision-making among health providers who work with stroke patients provided information concerning stroke rehabilitation ideology and practice. Data collected from 32 professionals on the meaning of rehabilitation in relation to stroke revealed that stroke rehabilitation is considered to be on the periphery of American health care. Three factors contribute to the peripheral status of stroke rehabilitation: the health care system devalues rehabilitation; stroke rehabilitation differs from acute care medicine; and stroke is viewed as a geriatric problem.

Aging Disaster: Mortality, Vulnerability, and Long-Term Recovery Among Katrina Survivors

Data from this multiyear qualitative study of the effects of Hurricane Katrina and flooding in New Orleans suggest differences in how the elderly cope with disaster. At the time of the disaster, the elderly of New Orleans were at greater risk than other groups, and more elderly died than any other group during the storm and in the first year after. Those who did survive beyond the first year report coping with the long-term disaster aftermath better than the generation below them, experiencing heightened stresses, and feeling as if they are “aging” faster than they should. We offer insight on how we might define and characterize disasters, and illustrate that long-term catastrophes “age” in specific ways.

“Is There Life on Dialysis?”: Time and Aging in a Clinically Sustained Existence

ABSTRACT Increasingly, in the United States, lives are being extended at ever-older ages through the implementation of routine medical procedures such as renal dialysis. This paper discusses the lives and experiences of a number of individuals 70 years of age and older at two dialysis units in California. It considers what kind of life it is that is being sustained and prolonged in these units, the meanings of the time gained through (and lost to) dialysis for older people, and the relationship of “normal” life outside the units to an exceptional state on the inside that some patients see as not-quite-life. Highlighting the unique dimensions of gerontological time on chronic life support, the article offers a phenomenology of the end of life as that end is drawn out, deferred by technological means, and effaced by the ethos and experiential course of dialysis treatment. ANN JULIENNE RUSS is a medical anthropologist and member of the research faculty at the University of California, San Francisco. Her research has focused on end-of-life care and communication among clinicians, patients, and their families in hospice and high-tech medical environments. Her publications have appeared in Cultural Anthropology and Culture, Medicine and Psychiatry. JANET K. SHIM is assistant adjunct professor at the University of California, San Francisco. Her research in medical sociology has focused on issues at the intersections of health inequalities, biomedical science and technologies, and race, gender, and aging. Her publications have appeared in Sociology of Health and Illness, American Sociological Review, and Social Studies of Science. SHARON R. KAUFMAN is professor of medical anthropology at the University of California, San Francisco. Her recent research explores life extension, technologies of dying, and subjectification in an aging society. She is the author, most recently, of … And a Time to Die: How American Hospitals Shape the End of Life (Scribner, 2005).

Family involvement in end-of-life hospital care

OBJECTIVES: To examine whether the end‐of‐life treatment provided to hospitalized patients differed for those who had a family member present at death and those who did not.

CONSTRUCTION AND PRACTICE OF MEDICAL RESPONSIBILITY: DILEMMAS AND NARRATIVES FROM GERIATRICS

A narrative approach is employed in this article about dilemmasand physician reasoning in geriatric medicine in order toexplore the moral-medical worlds of urban American physicians.Reconstructed dilemmas, in the form of stories told by 51doctors, are analyzed as cultural documents of both clinical-moralknowledge and practice and the physician as moral actor. Discussionfocuses on ways in which responsibility is constituted and enactedthrough a particular language of clinical action. This analysisopens the subject of bioethics to a range of infrequently discussedissues that physicians cite as deeply troubling and contributesto a broadening of anthropological approaches useful in the studyof bioethics.

“Just Because We Can Doesn’t Mean We Should”: views of nurses on deactivation of pacemakers and implantable cardioverter-defibrillators

PurposeThis study aims to identify nurses’ concerns about the clinical, ethical, and legal aspects of deactivating cardiovascular implantable electronic devices (CIEDs).MethodsWe used focus groups to discuss decision making in CIED management.ResultsFourteen nurses described the informed consent process as overly focused on procedures, with inadequate coverage of living with a device (e.g., infection risks and device shocks). Elderly patients were especially vulnerable to physician or family pressure about CIED implantation. Nurses believed that initial advance care planning discussions were infrequent and rarely revisited when health status changed. Many patients did not know that CIEDs could be deactivated; it was often addressed reactively (i.e., after multiple shocks) or when patients became too ill to participate in decision making. Nurses generally were supportive of CIED deactivation when it was requested by a well-informed patient. However, nurses distinguished between withholding versus withdrawing treatment (i.e., turning off CIEDs vs. declining implantation). Although most patients viewed their device as lifesaving, others perceived them as a “ticking time bomb.”ConclusionsNurses identified concerns about CIED decision making from implantation through end-of-life care and device deactivation and suggested avenues for improving patient care including early and regular advance care planning.

Making Longevity in an Aging Society: Linking Ethical Sensibility and Medicare Spending

An aging society, a growing array of life-extending medical interventions, Medicare policy, and an ethic of individual decision making together contribute to the deepening societal tension in the United States between controlling health care costs and enabling health consumer use of life-sustaining technologies. The activities that constitute longevity making, like so many other sociomedical practices, comprise a site for the governing of life and the emergence of new forms of ethical comportment and social participation. Those activities—including the necessity of treating risk, the difficulty of saying “no” to evidence-based interventions, and the responsibility of choosing among clinical options—also lie at the heart of debates about health care rationing and reform. Cardiac procedures, organ transplantation, and cancer treatments are three examples of medicines success in extending life and are emblematic of the existential and societal quandaries that result. A perspective from medical anthropology shows the ways in which the making of life is linked to health care spending and the ongoing debates about age-based rationing.

Generation and ethnic identity: a typological analysis.

Data bearing on cognitive acculturation, ethnic behavior, and values were gathered from three generations of Mexican and Japanese Americans. Two dimensions of ethnic behavior were identified and named: Anglo Face and Traditional Orientation. Although subcultures and generations differed in value orientation, the values data did not contribute to the identification of ethnic identity types. Typological analysis using Anglo Face, Traditional Orientation, and Acculturative Balance Scale scores identified six types of ethnic identity, two for each generation. Immigrants differ mainly on whether or not they retain Traditional Orientation; later generations differ mainly on Anglo Face. Although there are large differences between generations in Acculturative Balance, the two types within each generation do not differ.