[Show abstract][Hide abstract] ABSTRACT: Few patients decline therapy of a cardiovascular implantable electronic device (CIED), and little is known about the characteristics or reasoning of those who do. Our objective was to describe the reasons why patients decline CIED implantation using qualitative methods.
Pacing and Clinical Electrophysiology 06/2014; · 1.75 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This study aims to identify nurses' concerns about the clinical, ethical, and legal aspects of deactivating cardiovascular implantable electronic devices (CIEDs).
We used focus groups to discuss decision making in CIED management.
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."
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.
[Show abstract][Hide abstract] ABSTRACT: 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.
Medical Anthropology Quarterly 06/2011; 25(2):209-31. · 1.30 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Medical Anthropology 05/2011; 30(3):247-70. · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Social Science [?] Medicine 01/2011; 72(1):6-14. · 2.56 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Beginning in the 1980s in the United States, a growing number of parents of children diagnosed with autism and other problems related to neurodevelopment began to suspect that their children's conditions were caused by, or somehow related to, vaccinations. By the early 21st century, the idea that something about childhood vaccinations are the cause, may be the cause, or may be one contributing factor in the apparently rising numbers of children with neurodevelopmental problems had spread widely. This article traces parent anxiety about a connection between autism and vaccines. It illustrates the ways in which a large number of parents think about potential risks of vaccines and make decisions about immunizing their children. It focuses on their doubt and responsibilities, and shows how they negotiate their relationship to medical expertise and the ethics of citizenship. Overall, this article explores the rise of autism into public awareness—as a mutable object of knowledge, a protean disease category, and an exemplar of the condition of uncertainty today—to show the limits of risk assessment as a way of managing life. [risk assessment, subjectivity, ethic of care, technologies of doubt]
[Show abstract][Hide abstract] ABSTRACT: 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?
Sociology of Health & Illness 02/2010; 32(2):225-37. · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Perspectives in Biology and Medicine 01/2010; 53(3):407-24. · 0.54 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Medical Anthropology 10/2009; 28(4):317-25. · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The treatment imperative, say the authors, refers to the almost inexorable momentum towards intervention that is experienced by physicians, patients, and family members alike.
PLoS Medicine 04/2008; 5(3):e7. · 14.00 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Social Science [?] Medicine 07/2007; 64(11):2236-47. · 2.56 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Health 05/2007; 11(2):245-64. · 2.10 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This qualitative, ethnographic study explores the character and extent of medical choice for life-extending procedures on older adults. It examines the sociomedical features of treatment that shape health care provider understandings of the nature of choice, and it illustrates the effects of treatment patterns on patients' perspectives of their options for life extension.
By using participant observation in outpatient clinics and face-to-face interviews, we spoke with a convenience sample of 38 health professionals and 132 patients aged 70 or older who had undergone life-extending medical procedures. We asked providers and patients open-ended questions about their understandings of medical choice for cardiac procedures, dialysis, and kidney transplant.
Neither patients nor health professionals made choices about the start or continuation of life-extending interventions that were uninformed by the routine pathways of treatment; the pressures of the technological imperative; or the growing normalization, ease, and safety of treating ever older patients. We found a difference among cardiac, dialysis, and transplant procedures regarding the locus of responsibility for maintaining and extending life.
Provider and patient practices together reveal how the standard use of medical procedures at ever older ages trumps patient-initiated decision making.
The Journals of Gerontology Series B Psychological Sciences and Social Sciences 08/2006; 61(4):S175-84. · 2.85 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: With increasing frequency, the oldest members of US society are undergoing medical interventions aimed at prolonging life. Using cardiac care as a case study, this paper explores how a discourse of risk infuses and legitimates high-tech clinical treatments in late life. In particular, we examine how the diminishing risks associated with biomedical procedures produce a sense of medical possibility regarding life extension, and push the definition of "old age" into a receding future. Simultaneously, physicians, patients and families come to understand the management and reduction of future cardiac risks to be germane for individuals even near the end of life. Driven by the logic and language of risk, decisions to intervene are experienced as incremental and largely unremarkable, and the pursuit of an open-ended future via biomedical means is perceived as an ethical imperative, trumping deliberation or discussion of the utility of intervention and the ultimate ends being pursued. For practitioners and patients alike, the engagement of risk, the preservation of hope it facilitates and the routinisation of intervention it produces all contribute to the emerging mandate to treat at ever-older ages.
Sociology of Health & Illness 06/2006; 28(4):479-502. · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The number of kidneys transplanted to people over age 70, both from living and cadaver donors, has increased steadily in the past two decades in the United States. Live kidney donation, on the rise for all age groups, opens up new dimensions of intergenerational relationship and medical responsibility when the transfer of organs is from younger to older people. There is little public knowledge or discussion of this phenomenon, in which the site of ethical judgment and activism about longevity and mortality is one's regard for the body of another and the substance of the body itself is ground for moral consideration about how kinship is "done." The clinic, patient, and patient's family together shape a bond between biological identity and human worth, a demand for an old age marked by somatic pliability and renewability, and a claim of responsibility that merges the "right to live" and "making live." Live kidney transplantation joins genetic, reproductive, and pharmacological forms of social participation as one more technique linking ethics to intervention and the understanding of the arc of human life to clinical opportunity and consumption. Significant in this example is the medicocultural scripting of transplant choice that becomes a high-stakes obligation in which the long-term impacts on generational relations cannot be foreseen.
American Ethnologist 03/2006; 33(1):81-99. · 1.41 Impact Factor
[Show abstract][Hide abstract] 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.
Medical Anthropology 10/2005; 24(4):297-324. · 1.88 Impact Factor