Tag: health services

Bioethics Blogs

Improving End-of-Life Care for African-Americans through Advance Care Planning in Partnership with Faith Communities

Leslie McNolty

The Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected — particularly the preference to die at home in hospice care. 

We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases. 

Barriers and Opportunities

Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

From Harry Potter to Jesus – A transfigurative conference report by Laura Perler

 

Credit: Transcultural Studies, University of St. Gallen

Conference report on the anniversary conference: ‘Transfigurationen: Medizin macht Gesellschaft macht Medizin’, 17-18 February 2017, organised by the working group Medical Anthropology Switzerland of the Swiss Anthropological Association (SEG), Wiener Dialoge der Medizinanthropologie (Vienna Dialogues on Medical Anthropology) and the Work Group Medical Anthropology of the German Anthropological Association (GAA).

As medical anthropologists, we expect to learn about diverse places and people, and topics ranging from birth to death. We might not, however, anticipate hearing repeatedly about Harry Potter and Jesus. Both were named by multiple panellists at the tri-national conference on ‘Transfigurations’ in Basel as key figures in their quest to grasp the conference’s topic. Transfigurations?! Is it the kind of magical transformation from rat to tea cup as described in JK Rowling’s novels, or does it reference the pivotal moment when Jesus was transfigured and became radiant in glory upon a mountain? If it be either of these, what is the connection to medical anthropology? Transfigurations?! Is it just an intellectual phantasm of the conference organisers, bored by transformations and figurations, and inspired by the widely used trans– prefix? Transfigurations?! Or is it in the end just another word for assemblages? Read this conference report and you might be inspired by the diverse interpretations and applications of the term, and perhaps even feel yourself transfigured by transfigurations…

 

Panels

The first panel, ‘Therapeutic landscapes: Pharmaceuticals, commodification and epistemologies’, was chaired by Angelika Wolf (Freie Universität Berlin). Stephan Kloos (Austrian Academy of Sciences) began with his talk on the transfigurations of traditional Asiatic medicine.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – April 2017 by Danya Glabau

Critical Public Health

On difference and doubt as tools for critical engagement with public health

Catherine M. Will

This paper argues that critical public health should reengage with public health as practice by drawing on versions of Science and Technology Studies (STS) that ‘de-centre the human’ and by seeking alternative forms of critique to work inspired by Foucault. Based on close reading of work by Annemarie Mol, John Law, Vicky Singleton and others, I demonstrate that these authors pursue a conversation with Foucault but suggest new approaches to studying contemporary public health work in different settings. Proposing that we ‘doubt’ both the unity of public health and its effects, I argue that this version of STS opens up a space to recognise multiplicity; to avoid idealising what is being criticised; and to celebrate or care for public health practices as part of critique. Finally I oppose the view that considering technologies, materials and microbes leads to micro-level analysis or political neutrality, and suggest that it allows us to reframe studies of public health to account for inequalities and to draw attention to weak or retreating states, active markets and the entangled relations of humans and non-humans across the world.

 

Biopolitical precarity in the permeable body: the social lives of people, viruses and their medicines

Elizabeth Mills

This article is based on multi-sited ethnography that traced a dynamic network of actors (activists, policy-makers, health care systems, pharmaceutical companies) and actants (viruses and medicines) that shaped South African women’s access to, and embodiment of, antiretroviral therapies (ARVs).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Global Health Policy: Trump and the Reinstatement of the Global Gag Rule

By: Jorge Luis Rivera-Agosto

On January 23, 2017, President Trump signed a Presidential Memorandum reinstating the so-called Mexico City Policy. The Memorandum conditions U.S. global health and family planning assistance to a strict rule that precludes foreign non-governmental organizations (also known as “NGOs”) from promoting or performing abortion as a method of family planning. Also known as the “global gag rule,” this policy represents a blow specifically to women’s health worldwide. Thanks to this new action, it will become harder, like in past years when it was in effect, to have resources to support family planning and reproductive health services, such as “family counseling, contraceptive commodities, condoms, and reproductive cancer screenings.” Even though the U.S. government won’t retract from the Memoranda until this Administration ceases, global efforts should be made to ameliorate the negative effects the new policy will cause.

The Mexico City Policy was first enacted by President Reagan in 1984 – and at the time, it represented an expansion of existing legislative restrictions of the use of U.S. funds for abortions internationally. It was then rescinded by President Clinton in 1991; reinstated by President Bush in 2001; rescinded by President Obama in 2009; and reinstated and expanded by President Trump in 2017. The policy requires foreign NGOs “to certify that they will not perform or actively promote abortion as a method of family planning, using funds from any source (including non-U.S. funds), as a condition for receiving U.S. government global family planning assistance and any other U.S. global health assistance.” The reason given to enact such policy was that the U.S.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals–March 2017, Part II by Julia Kowalski

This is Part II of March’s article round-up. You can find part I here.

In addition to the articles below, Theory, Culture and Society features an interview with Michel Foucault from 1983.

New Genetics and Society

Everything and nothing: regulating embryo research in Canada

Alana Cattapan & Dave Snow

This article examines how medical and scientific professionals experience and engage with the governance of embryo research in Canada. Drawing on the history of embryo regulation in Canada and the findings of a survey conducted with lab directors in Canadian fertility clinics, we identify a disjuncture between the rules established by legislation, regulations, and research ethics guidelines and the real-life experiences of professionals in the field. This disjuncture, we argue, is the result of both the absence of implementation mechanisms that would give substance to the governing framework, as well as an inability on the part of medical and scientific professionals to engage in robust self-regulation. Overall, we demonstrate that in an ethically charged and highly technical area of policy-making like embryonic research, clarity about the roles and responsibilities of government and professionals in policy-making and implementation is critical to effective governance.

Not just about “the science”: science education and attitudes to genetically modified foods among women in Australia

Heather J. Bray & Rachel A. Ankeny

Previous studies investigating attitudes to genetically modified (GM) foods suggest a correlation between negative attitudes and low levels of science education, both of which are associated with women. In a qualitative focus group study of Australian women with diverse levels of education, we found attitudes to GM foods were part of a complex process of making “good” food decisions, which included other factors such as locally produced, fresh/natural, healthy and nutritious, and convenient.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Why Addiction Narratives Matter

By Katie Givens Kime
Image courtesy of
Merrimack Repertory Theatre.

“My Higher Power is: Science!” proclaims Sean, a newly recovered alcoholic. “Sean” is the lead character in a comedic play, “The White Chip,” which premiered last year at Merrimac Repertory Theatre outside of Boston, Massachusetts. Written by Sean Daniels, the play dramatizes Daniels’ own near demise from alcoholism, and his experience of recovery. Neuroethics is writ large as the play tells the story of how critically important various addiction etiologies can be for those struggling with alcoholism, or addiction of any sort. In Sean’s case, the etiology is the brain disease model of addiction (BDMA) in a notable combination with the “Higher Power” understanding of 12-step programs, which he credits with saving his life. Behind the curious twists of the play, questions linger: which model of addiction should be presented to those in recovery, when so much conflict exists amongst addiction researchers, clinicians, and recovery care providers? At what point does an effective (potentially life-saving) narrative of addiction etiology supersede the obligation to provide all sides of the controversial matter of addiction modeling?

When Sean “hits bottom,” he has destroyed his career, his marriage, his health, and nearly lost his life while driving drunk. He enters a rehabilitation facility, but struggles with the suggestion that he find a “Higher Power.” Such a practice is reflective of the metaphysical claim central to Alcoholics Anonymous, and every other 12-step program: surrender to a Higher Power of the addict’s understanding, and is perhaps the most significant distinguishing feature separating 12-step methods from other recovery pathways.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

What Does It Mean to Be a Just Institution?

[Cross-posted from the Public Health Post Blog, where it originally appeared on March 17, 2017.]  By Lauren Taylor   The Trump administration is prompting many of us in health services to ask new questions about if, and how, to draw lines … Continue reading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Ethics & Society Newsfeed: March 10, 2017

Image via

Politics

White House Slammed by Federal Ethics Chief for Not Disciplining Kellyanne Conway
U.S. government’s official ethics watchdog blasted White House for not taking disciplinary action against senior counselor Kellyanne Conway for promoting Ivanka Trump’s products on TV

Trump’s Ethics Order Seen as Boost for Shadow Lobbying
President Trump’s speech to the joint session of Congress on Tuesday explains executive order to ban lobbying for five years for officials who leave office – addresses the ethics of “draining the swamp”

George W. Bush’s ethics lawyer says Jeff Sessions’ denial of Russia talks ‘a good way to go to jail’
Alleged ethics violations Jeff Sessions may have made when he claimed under oath that he “did not have communications with the Russians”

ACLU lawyer files ethics complaint against Sessions over Russia testimony: report
An American Civil Liberties Union (ACLU) lawyer, Christopher Anders, formally filed an ethics complaint against Attorney General Jeff Sessions over his testimony to the Senate Judiciary Committee denying any contact with Russian officials

Trump’s team nixed ethics course for White House staff
White House staff has received no ethics training under the Trump transition team and now presidency

Medical Ethics

House Republicans would let employers demand workers’ genetic test results
Bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars; employers see that genetic and other health information

Prisoners with serious mental health problems face urgent treatment delays
Prisoners in the UK are supposed to receive mental health services after being referred to such a unit within 14 days and new official numbers have indicated that regulations are not being followed

New pregnancy testing technique needs limits say ethics body
Press release from the Nuffield Council on Bioethics explores the ethics of Non-Invasive Prenatal Testing (NIPT) and explains why they are calling for a moratorium on the use of the new technology

Ethical Implications of User Perceptions of Wearable Devices
Wearable devices can save time at medical appointments and may even save lives – ethical implications of having large amounts of personal information stored in devices that are shared with third parties

When Evidence Says No, But Doctors Say Yes
Medical costs increasing and patient benefits are declining  – ethical conundrum of why medical professionals continue to prescribe unnecessary treatment, and calls for responsible regulation

States Wrestle With Legalizing Payments For Gestational Surrogates
Legislators proposed a bill that would regulate gestational surrogacy — potentially adding legal oversight to fertility clinics that facilitate these pregnancies

Environmental Ethics

EPA environmental justice leader resigns, amid White House plans to dismantle program
Key environmental justice leader at the Environmental Protection Agency has resigned, saying recent budget proposal to defund work would harm the people who most rely on the EPA

Why Won’t American Business Push for Action on Climate?

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Ethics & Society Newsfeed: March 10, 2017

Image via

Politics

White House Slammed by Federal Ethics Chief for Not Disciplining Kellyanne Conway
U.S. government’s official ethics watchdog blasted White House for not taking disciplinary action against senior counselor Kellyanne Conway for promoting Ivanka Trump’s products on TV

Trump’s Ethics Order Seen as Boost for Shadow Lobbying
President Trump’s speech to the joint session of Congress on Tuesday explains executive order to ban lobbying for five years for officials who leave office – addresses the ethics of “draining the swamp”

George W. Bush’s ethics lawyer says Jeff Sessions’ denial of Russia talks ‘a good way to go to jail’
Alleged ethics violations Jeff Sessions may have made when he claimed under oath that he “did not have communications with the Russians”

ACLU lawyer files ethics complaint against Sessions over Russia testimony: report
An American Civil Liberties Union (ACLU) lawyer, Christopher Anders, formally filed an ethics complaint against Attorney General Jeff Sessions over his testimony to the Senate Judiciary Committee denying any contact with Russian officials

Trump’s team nixed ethics course for White House staff
White House staff has received no ethics training under the Trump transition team and now presidency

Medical Ethics

House Republicans would let employers demand workers’ genetic test results
Bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars; employers see that genetic and other health information

Prisoners with serious mental health problems face urgent treatment delays
Prisoners in the UK are supposed to receive mental health services after being referred to such a unit within 14 days and new official numbers have indicated that regulations are not being followed

New pregnancy testing technique needs limits say ethics body
Press release from the Nuffield Council on Bioethics explores the ethics of Non-Invasive Prenatal Testing (NIPT) and explains why they are calling for a moratorium on the use of the new technology

Ethical Implications of User Perceptions of Wearable Devices
Wearable devices can save time at medical appointments and may even save lives – ethical implications of having large amounts of personal information stored in devices that are shared with third parties

When Evidence Says No, But Doctors Say Yes
Medical costs increasing and patient benefits are declining  – ethical conundrum of why medical professionals continue to prescribe unnecessary treatment, and calls for responsible regulation

States Wrestle With Legalizing Payments For Gestational Surrogates
Legislators proposed a bill that would regulate gestational surrogacy — potentially adding legal oversight to fertility clinics that facilitate these pregnancies

Environmental Ethics

EPA environmental justice leader resigns, amid White House plans to dismantle program
Key environmental justice leader at the Environmental Protection Agency has resigned, saying recent budget proposal to defund work would harm the people who most rely on the EPA

Why Won’t American Business Push for Action on Climate?

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals: February 2017 by Christine Sargent

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.