"Losing My Self": A Poet's Ironies and a Daughter's Reflections on Dementia.

What can we learn about the experience of dementia and about ways of being human when a poet describes her forgetting? My mother, the poet Shirley Kaufman, died in 2016 at the age of 93. She had dementia for many years. By her mid-80s, many of her poems probed the experience of forgetting, including questions about the nature of self, memory, and thought, and the location of the past and the future. Her experience of forgetting revealed in her ninth and last collection, the widely acclaimed Ezekiel's Wheels (2009), serves as my entry point for an exploration of the self as it becomes dislocated in time yet remains attuned to and consciously aware of that dislocation. That dual quality of my mother's experience is the central, ironic tension explored in this essay. An intimate ethnography, this essay connects my mother's late-life poetry with my own experience, both as a daughter who watched her mother's state of mind unfold and as an anthropologist with extensive experience studying aging, late-life identity, illness, and the culture of medicine. Through the insights of my mother's poetic language I show how dementia can expose ironic features of selfhood, communication, and life itself that are worth our discernment. My hope is that my analysis may focus our gaze on the inherent tension in this form of life and teach us something new about identity, memory, and what is shared among us, those with and without the condition we call dementia.

"Just Because We Can Doesn't Mean We Should": views of nurses on deactivation of pacemakers and implantable cardioverter-defibrillators.

PURPOSE: This study aims to identify nurses' concerns about the clinical, ethical, and legal aspects of deactivating cardiovascular implantable electronic devices (CIEDs). METHODS: We used focus groups to discuss decision making in CIED management. RESULTS: Fourteen 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." CONCLUSIONS: Nurses 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.

Medicare, ethics, and reflexive longevity: governing time and treatment in an aging society.

The clinical activities that constitute longevity making in the United States are perhaps the quintessential example of a dynamic modern temporality, characterized by the quest for risk reduction, the powerful progress narratives of science and medicine, and the personal responsibility of calculating the worth of more time in relation to medical options and age. This article explores how medicine materializes and problematizes time through a discussion of ethicality-in this case, the form of governance in which scientific evidence, Medicare policy and clinical knowledge and practice organize first, what becomes "thinkable" as the best medicine, and second, how that kind of understanding shapes a telos of living. Using liver disease and liver transplantation in the United States as my example, I explore the influence of Medicare coverage decisions on treatments, clinical standards, and ethical necessity. Reflexive longevity-a relentless future-thinking about life itself-is one feature of this ethicality.

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.

Toward a phenomenology of boundaries in medicine: chronic illness experience in the case of stroke.

In this article I explore the ambiguous nature of the boundaries of authority and responsibility in medicine by discussing two dimensions of patients' response to long-term ramifications of stroke. A phenomenological examination of the chronic illness experience is employed to identify how and the extent to which medicine's power both responds to and affects the individual sufferer. Rather than interpret the illness process as a dichotomy between medical control and patient autonomy, this article presents some assumptions about the boundaries of medical authority that are held by patients and practitioners alike. I suggest that dilemmas that patients face following a stroke are responses to medicine's limits and scope as well as reflections of medicine's goals and values. I argue that phenomenological studies of existential responses to illness are necessary in order to understand cultural sources of unmet expectations resulting from chronic conditions.

Ironic technology: Old age and the implantable cardioverter defibrillator in US health care.

We take the example of cardiac devices, specifically the implantable cardioverter defibrillator, or ICD, to explore the complex cultural role of technology in medicine today. We focus on persons age 80 and above, for whom ICD use is growing in the U.S. We highlight an ironic feature of this device. While it postpones death and 'saves' life by thwarting a lethal heart rhythm, it also prolongs living in a state of dying from heart failure. In that regard the ICD is simultaneously a technology of life extension and dying. We explore that irony among the oldest age group -- those whose considerations of medical interventions are framed by changing societal assumptions of what constitutes premature death, the appropriate time for death and medicine's goals in an aging society. Background to the rapidly growing use of this device among the elderly is the 'technological imperative' in medicine, bolstered today by the value given to evidence-based studies. We show how evidence contributes to standards of care and to the expansion of Medicare reimbursement criteria. Together, those factors shape the ethical necessity of physicians offering and patients accepting the ICD in late life. Two ethnographic examples document the ways in which those factors are lived in treatment discussions and in expectations about death and longevity.

Making longevity in an aging society: linking Medicare policy and the new ethical field.

Life-extending interventions for older persons are changing medical knowledge and societal expectations about longevity. Today's consciousness about growing older is partly shaped by a new form of ethics, constituted by and enabled through the routines and institutions that comprise ordinary clinical care. Unlike bioethics, whose emphasis is on clinical decision-making in individual situations, this new form of ethics is exceptionally diffuse and can be characterized as an ethical field. It is located in and shaped by health-care policies, standard technologies, and clinical evidence, and it emerges in what patients and families come to need and want. Three developments illustrate this ethical field at work: the changing nature of disease, especially the ascent of risk awareness and risk-based strategies for life extension; the role of technology in reshaping the ends of medicine; and the role of Medicare policy in creating need and ethical necessity. Medicare's expanding criteria for payment coverage of liver transplantation and implantable cardiac devices illustrate the pervasive logic of this new form of ethics. The powerful connection between the technological imperative and its ethical necessity is rarely mentioned in Medicare reform debates.

Time, clinic technologies, and the making of reflexive longevity: the cultural work of time left in an ageing society.

Developments in clinical intervention are having a profound impact on health and health behaviours in late life and on ideas about longevity and the appropriate time for death. The fact that the timing of death is even considered to be a controllable event is a relatively new cultural phenomenon. The activities that make up life extension, like other medical practices scrutinised by social scientists, constitute a site for the emergence of new forms of subjectivity. For older adults the clinical encounter forces a calculation about how much time left is wanted in relation to age. The twin dimensions of the transformation of time highlighted in this article - the control over the timing of death and the creation of time left - both contribute to and are a widespread effect of biomedicalisation in affluent sectors of society. Through three stories this paper begins to map the cultural work that the concept, time left, does, the socio-medical ways in which that notion is talked about, organised and calculated in the American clinic today. It asks, what kind of subject emerges when longevity, imbued with the technological, becomes a reflexive practice and an object of intervention and apparent choice?

Time, Clinic Technologies, and the Making of Reflexive Longevity: The cultural work of 'time left' in an aging society.

Developments in clinical intervention are having a profound impact on health and health behaviors in late life and on ideas about longevity and the appropriate time for death. The fact that the timing of death is even considered to be a controllable event is a relatively new cultural phenomenon. The activities that make up life extension, like other medical practices scrutinized by social scientists, constitute a site for the emergence of new forms of subjectivity. For older adults the clinical encounter forces a calculation about how much 'time left' is wanted in relation to age. The twin dimensions of the transformation of time highlighted in this essay -- the control over the timing of death and the creation of 'time left' -- both contribute to and are a widespread effect of biomedicalization in affluent sectors of society. Through three stories this essay begins to map the cultural work that the concept, 'time left,' does, the socio-medical ways in which that notion is talked about, organized and calculated in the American clinic today. It asks, what kind of subject emerges when longevity, imbued with the technological, becomes a reflexive practice and an object of intervention and apparent choice?

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 medicine's 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.

The value of "life at any cost": talk about stopping kidney dialysis.

With the trend toward an older, sicker dialysis population in the USA, discussions of ethical issues surrounding dialysis have shifted from concerns about access to and availability of the therapy, to growing unease about non-initiation and treatment discontinuation. Recent studies report treatment withdrawal as the leading cause of death among elderly dialysis patients. Yet, the actual activities that move patients toward stopping treatment often remain obscure, even to clinicians and patients themselves. This paper explores that paradox, drawing on anthropological research among patients over age 70, their families, and clinicians in two California renal dialysis units. It concludes that many older patients sacrifice a sense of choice about dialysis in the present to maintain "choice" as both value and possibility for the future. Even so, patients desire more information and communication, provided earlier in their illness, about prognosis, how long they can expect to be on dialysis, and what the impact of the treatment will be on their daily lives. That, with time, there is a transition to be made from dialysis as "treatment" to end of life care could be better explained and managed to alleviate patients' confusion and unneeded isolation.

Clinical life: expectation and the double edge of medical promise.

This article introduces the concept of clinical life to capture a form of life produced in the pursuit and wake of medically achieved longevity. Relying on the retrospective accounts of 28 individuals over age 70 who have undergone cardiac bypass surgery, angioplasty or a stent procedure, as well as interviews with their families and with clinicians, we examine three features of clinical life. First, patients do not distinguish between clinical possibility and clinical promise, and thus assume that life can and will be improved by medical intervention in late life. Rather than anticipating a range of potential treatment outcomes, patients therefore expect the best-case scenario: that medical procedures will reverse aging, disease and the march of time. Second, patients then assess the value of their post-procedure lives in accordance with that expectation. Norms regarding what life 'should be like' at particular ages are continually recalibrated to the horizon of what is clinically possible. And third, the price of living longer entails a double-edged relationship with the clinic--it generates opportunities for bodily restoration and increased self-worth but also creates ambivalence about the value of life. This latter feature of clinical life is rarely publicly acknowledged in an environment that emphasizes medical promise.