How the legalization of assisted dying is changing our
lives. Over the past five years, medical aid-in-dying
(also known as assisted suicide) has expanded rapidly in the United
States and is now ...legally available to one in five Americans. This
growing social and political movement heralds the possibility of a
new era of choice in dying. Yet very little is publicly known about
how medical aid-in-dying laws affect ordinary citizens once they
are put into practice. Sociological studies of new health policies
have repeatedly demonstrated that the realities often fall short of
advocacy visions, raising questions about how much choice and
control aid-in-dying actually affords. Scripting Death
chronicles two years of ethnographic research documenting the
implementation of Vermont's 2013 Patient Choice and Control at End
of Life Act. Author Mara Buchbinder weaves together stories
collected from patients, caregivers, health care providers,
activists, and legislators to illustrate how they navigate
aid-in-dying as a new medical frontier in the aftermath of
legalization. Scripting Death explains how medical
aid-in-dying works, what motivates people to pursue it, and
ultimately, why upholding the "right to die" is very different from
ensuring access to this life-ending procedure. This unprecedented,
in-depth account uses the case of assisted death as an entry point
into ongoing cultural conversations about the changing landscape of
death and dying in the United States.
All in your head Buchbinder, Mara
2015., 20150605, 2015, 2015-06-05
eBook
Although pain is a universal human experience, many view the pain of others as private, resistant to language, and, therefore, essentially unknowable. And, yet, despite the obvious limits to ...comprehending another's internal state, language is all that we have to translate pain from the solitary and unknowable to a phenomenon richly described in literature, medicine, and everyday life. Without denying the private dimensions of pain,All in Your Headoffers an entirely fresh perspective that considers how pain may be configured, managed, explained, and even experienced in deeply relational ways.Drawing on ethnographic fieldwork in a pediatric pain clinic in California, Mara Buchbinder explores how clinicians, adolescent patients, and their families make sense of puzzling symptoms and work to alleviate pain. Through careful attention to the language of pain-including narratives, conversations, models, and metaphors-and detailed analysis of how young pain sufferers make meaning through interactions with others, her book reveals that however private pain may be, making sense of it is profoundly social.
The power of suggestion Buchbinder, Mara
Medicine Anthropology Theory,
04/2019, Letnik:
6, Številka:
1
Journal Article
Recenzirano
Odprti dostop
This article examines an ethical controversy that has received relatively little attention in public debates about the legalization of medical aid-in-dying (AID): should physicians inform patients ...that they have the option of hastening death? Drawing on ethnographic research about the implementation of AID in Vermont, I argue that how we understand the moral stakes of this debate depends on divergent views regarding language use in social interactions. Some stakeholders in this debate view a physician’s words as powerful enough to damage the patient-physician relationship or to influence a patient to hasten her death, while others believe that merely informing patients about AID cannot move them to act against their own values and preferences. I illustrate how these divergent perspectives are tied to competing language ideologies regarding clinical disclosure, which I call ‘disclosure ideologies’. My analysis of these two disclosure ideologies surrounding AID highlights disclosure practices in medicine as a rich site for medical anthropological theorizing on linguistic performativity and the social power of clinical language.
Most incarcerations for people living with HIV (PLWH) occur in jails, yet studies of HIV care during jail incarceration are limited. As part of a larger study to explore the ethical considerations in ...extending public health HIV surveillance to jail settings, we conducted semi-structured interviews with twenty-three PLWH with more than 300 distinct jail incarcerations post HIV diagnosis in 21 unique North Carolina jails. Interviews included questions about HIV disclosure in jail, the type of HIV care received in jail, and overall experiences with HIV care in jail. We report on participants' experiences and perspectives in four domains: access to HIV care in jail; impact of jail incarceration on continuity of HIV care; privacy and stigma; and satisfaction with HIV care in jail. Although most participants received HIV medications and saw providers while in jail, almost half reported that their greatest challenge in regard to HIV care was obtaining their HIV medications in the face of limited jail resources or policies that made access to medications difficult. Findings from this study suggest that jail leadership should review internal policies regarding HIV medications to ensure that PLWH can receive them quickly upon entry into jail. Findings also suggest that more external resources are needed, for example from state and local health departments, so that jails can provide timely HIV medications for PLWH incarcerated in their facilities.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Much of the literature on aid-in-dying (AID) has drawn heavily on rights-based ethical and legal frameworks that emphasize patients' rights of self-determination in end-of-life decision-making. Less ...attention has focused on how terminally ill people actually experience such putative rights once they are legally authorized. This analytic essay draws on findings from the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation of AID in Vermont (2015-2017). First, I show that terminally ill people can face a range of barriers to accessing AID in permissive jurisdictions, and that access to AID is mediated by various inequalities endemic to US health care, as well as some that are unique to AID. I then build on these findings to examine the utility of the concept of justice for public health scholarship on AID. By integrating empirical, ethical, and policy analysis, I reframe rights-based frameworks that emphasize the role of individual choice and decision-making at the end of life. In doing so, I draw attention to health care justice as a neglected issue in public health perspectives on AID.
Physicians who participate in abortion and medically assisted death in the United States work at the margins of institutionalized medicine. What motivates them to engage in such “dirty work”? This ...article uses ethnographic materials from two recent projects to analyze physicians’ roles as gatekeepers to contested medical services. Abortion and medically assisted death share many similarities: They are both deeply stigmatized practices that are heavily restricted in many U.S. jurisdictions, and which many physicians are reluctant to participate in for moral, religious, or professional reasons. They both also confer medicine with the power to govern life and death decisions through the apparatus of state law. However, state laws operate quite differently on physicians in these two cases, with different outcomes. This comparative analysis demonstrates how dirty work in medicine enrolls the agency and subjectivity of physicians in distinctive ways that may be eclipsed by totalizing biopolitical frameworks. abortion, medical aid in dying, physicians, agency, biopolitics, United States
This article draws on ethnographic research on the implementation of Vermont's 2013 medical aid‐in‐dying (AID) law to explore a fundamental paradox: While public discourse characterizes AID as a ...mechanism for achieving an individually controlled autonomous death, the medico–legal framework that organizes it enlists social support and cultivates dependencies. Therefore, while patients pursuing AID may avoid certain types of dependency—such as those involved in bodily care—the process requires them to affirm and strengthen other bureaucratic, material, and affective forms. By tracing the social phenomenology of several AID deaths, I illustrate how AID results in distinctive forms of sociality and dependency that require terminally ill people and caregivers to embrace a collaborative stance toward choreographing death. I argue that assisted dying offers an opportunity to resist dominant U.S. cultural narratives that view dependency in purely negative terms and reimagine the relationships between disability, dependency, and care at the end of life.
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