Tag: caring

Bioethics Blogs

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

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 – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

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 News

An ‘Army Of People’ Helps Houston Cancer Patients Get Treatment

September 1, 2017

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As rains pounded Houston on Sunday, Dr. Karen Lu took to Twitter and conveyed both alarm and reassurance: “Roads around @MDAndersonNews impassable. Our on-site ride out team is caring for patients and we are all safe.

Lu is a professor of gynecologic oncology and interim chief medical officer at the University of Texas MD Anderson Cancer Center, a top cancer hospital and research center. Earlier that morning, the hospital had sent a high-water vehicle — a box truck — to Lu’s neighborhood, and she walked eight blocks through flooded streets to meet it.

The storm forced the hospital to close to outpatients. Surgeries, chemotherapy and radiation treatment and other appointments were put on hold for the 13,000 people MD Anderson sees each week.

Inside the hospital, doctors, nurses, technicians and facilities and food service staff were keeping things running for more than 500 inpatients and their families.

Lu spoke to Morning Edition host Mary Louise Kelly as the hospital was shifting into recovery mode Thursday.

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NPR: Shots

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 – July 2017 by Danya Glabau

American Quarterly

Regina Kunzel

Among the central themes of the eclectic field of mad studies is a critique of psychiatric authority. Activists and academics, from a range of positions and perspectives, have questioned psychiatry’s normalizing impulses and have privileged mad-identified knowledges over expert ones. One of the most successful assaults on psychiatric authority was launched by gay activists in the 1960s and early 1970s, resulting in the removal of homosexuality from the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973. But if that event marked an inspirational victory against psychiatric power, it was also, as Robert McRuer notes, “a distancing from disability.”1Revisiting this history through analytic lenses offered by disability and mad studies defamiliarizes familiar historical narratives and unsettles the critique of psychiatric authority, especially when countered by claims to health.

 

Conflicts over the value, meaning, and efficacy of vaccination as a preventive practice suggest that vaccination resistance stages disagreement within modern biological citizenship. This paper explores how immunity circulates in both vaccination controversy and biopolitical philosophies. Two positions—one characterized by somatic individualism, flexible bodies, reflexive approaches to knowledge, and the idea of the immune system as “the essential relation the body has with its vulnerability,” and another characterized by the immunitary paradigm, biosecurity, trust in expert systems, and vaccination—emerge. Understanding that oppositional relation can reframe public understanding of vaccine skepticism and public health responses to it.

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

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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

Press Release – “The Worst Outcome” Prof Dominic Wilkinson

This afternoon the long-running, deeply tragic and emotionally fraught legal dispute over treatment of Charlie Gard reached its sad and sadly inevitable conclusion. Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him.

This is the worst possible outcome for Charlie’s family. They have had to accept the devastating news that their beloved son cannot recover and that their hopes for an experimental treatment cannot be realised.

There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground. Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.

We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.

We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm. It would also mean that futile and harmful treatment is not prolonged by a protracted legal process.

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

When a doctor calls a patient a racial slur, who is hurt?

by Keisha Ray, Ph.D.

Last week Lexi Carter, a black woman from Tennessee had an experience that so many other black people have had, a racially charged visit with a doctor. When Carter walked into her doctor’s office, Dr. James Turner greeted her with “Hi Aunt Jemima.” During the visit, he proceeded to call her Aunt Jemima more than once. Carter’s encounter with Dr. Turner is problematic for many reasons: 1. The term “Aunt Jemima,” which is the name of a popular syrup and pancake mix whose packaging depicts the face of a black woman, has a long history of racism dating back to the late 1800s; 2. Dr. Turner made these remarks in front a physician assistant trainee and a student who are still learning about the field of medicine; 3. After admitting to making the remark, Dr. Turner said that the term “was not intended to show disrespect for Ms. Carter,” calling it a “misspoken blunder.”

Aunt Jemima is a reflection of the “mammy” archetype that can be found in films, television shows, and literature (e.g. Calpurnia in “To Kill a Mocking bird” or Mammie in “Gone with the Wind”). The archetype depicts a larger black woman who is usually wearing an apron over a tattered dress, her hair is usually tied up with a scarf of some sort (typical of black slaves who tied their hair up to help protect from lice). The mammie character is also typically responsible for caring for the homes and children of white slave owners (i.e. house slaves), and who speaks using vernacular typical of uneducated black slaves, a vernacular that is usually mocked for being simple and unrefined unlike that of the vernacular of white people.

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

Trump is Gross: Taking Political Taste (and Distaste) Seriously

by Shelley Park 

ABSTRACT. This paper advances the somewhat unphilosophical thesis that “Trump is gross” to draw attention to the need to take matters of taste seriously in politics. I begin by exploring the slipperiness of distinctions between aesthetics, epistemology, and ethics, subsequently suggesting that we may need to pivot toward the aesthetic to understand and respond to the historical moment we inhabit. More specifically, I suggest that, in order to understand how Donald Trump was elected President of the United States and in order to stem the damage that preceded this and will ensue from it, we need to understand the power of political taste (and distaste, including disgust) as both a force of resistance and as a force of normalization.

My 5-year-old granddaughter refers to foods, clothes, and people she does not like as “supergross.” It is a verbiage that I have found myself adopting for talking about many things Trumpian, including the man himself. The gaudy, gold-plated everything in Trump Towers; his ill-fitting suits; his poorly executed fake tan and comb-over; his red baseball cap emblazoned with “Make America Great Again;” his creepy way of talking about women (including his own daughters); his racist vitriol about Blacks, Muslims and Mexicans; his blatant over-the-top narcissism; his uncontrolled tantrums; his ridiculous tweets; his outlandish claims; his awkward hand gestures and handshakes; the disquieting ease with which he is seduced by flattery; his embarrassing disregard for facts; his tortured use of language; his rudeness toward other world leaders; the obsequious manner in which other Republicans are treating the man they despised mere months ago; the servility of many Democrats in the face of a military–industrial coup.

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

Medical Decision-Making In the Tragic Life of Charlie Gard

by Craig Klugman, Ph.D.

On Friday, Charlie Gard is scheduled to have his life support discontinued. Charlie Gard is an 11-month-old baby born with RRM2B encephalomyopathic mitochondrial DNA depletion syndrome—a rare genetic disorder with no cure. Those with the mutation live at most into early childhood with a multitude of life threatening conditions (lactic acidosis, ammonia build up, heart abnormalities). Charlie suffers from seizures, cannot independently breathe. He is also blind and deaf. Great Ormond Street Hospital (London) and Charlie’s doctors believe there is nothing more medically that can be done to benefit him and requested to remove his life sustaining treatment. Connie Yates and Chris Gard, his parents, believe that there is a chance of a miraculous cure in an experimental nucleoside treatment in the United States, even though the technique has never been tried for this condition. In the words of the unnamed U.S. specialist, nucleoside treatment would provide a “small hope” for helping

The case has gone through the British courts and the European Court of Human Rights, all of which agreed with the hospital. They declared that prolonging Charlie’s life would be “inhumane and unreasonable.” The courts believed that the experimental treatment in the US would be futile and could cause Charlie much suffering. The European Court ruled on July 4 that life support can be removed on Friday.

Under British law, when parents and physicians disagree on treatment, the courts normally intervene and are the final decision-makers. Unlike in the US, the highest value is the best interest (benefit) to the child rather than parental rights to make decisions for their child.

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 – June 2017, part one by Aaron Seaman

Anthropology and Aging (open access)

The Social Context of Collective Physical Training among Chinese Elderly: An Anthropological Case Study in a Park in Beijing

Yeori Park

This study analyzes the social context in China where the elderly participate in collective physical training, a cultural activity specific to the country. For this study, senior citizens aged 60 or above who participated in collective physical training in a park in Beijing were observed for five months. Research results found that collective physical training enables formation of social networks providing mutual caring and support. On the other hand, the participants conform to the self-disciplined modern discourse to survive in the post-Mao society. They do collective physical training due to their social conditions, such as the poorly established welfare system for the aged, severance pay that is too low to cover medical expenses. Although the participants seem to autonomously choose collective physical training based on their own preferences, the context of Chinese society, including hidden government intentions, leads the elderly to participate in training activities.

Social Contract on Elderly Caregiving in Contemporary Chile

Carola Salazar

This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.

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.