Tag: rights

Bioethics Blogs

Politics of Pain: Investigating the Ethics of Palliative Care as a Global Human Right

by Alix Masters

Within the last decade, strides have been made in the field of global health policy to extend the reaches of palliative care universally.  In 2014, the World Health Organization formally declared palliative care a global human right.[1] This development in global health policy is a positive one when we consider the medical politics of pain relief across racial difference.  Both in the United States and abroad, there is a long medical history of discriminatory practices against certain groups of people with regard to pain management—including withholding necessary pain medication altogether.  Therefore, in many ways the declaration of palliative care as a human right is a necessary step in ensuring all peoples, regardless of identity, have their pain taken seriously by the medical establishment and have their comfort made a medical priority.  When we consider how different cultures negotiate beliefs around death and pain relief, however, the issue of palliative care as a universal human right becomes more complex.  For example, countries with strong histories of Buddhist thought and culture have traditionally opposed the ideology of palliative care.[26]  In Buddhism, suffering is considered an inextricable part of life and masking this suffering through medical intervention is looked down upon.[2]  For example, Vietnam, a country with a culture strongly imbued with Eastern Buddhist values, has a long history of rejecting palliative care and pain medications in general.[26]  Due to this, the World Health Organization’ declaration that palliative care is a universal human right could also be understood as a Western organization blatantly ignoring Buddhist cultural traditions.  While the declaration of palliative care as a human right is important progress in many ways, it is also important that Western medicine not impose our values globally without consideration for the complex histories and belief systems of diverse cultures.

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

Beauty’s Knowledge: Hawthorne’s Moral Fable “Rappaccini’s Daughter” by Leo Coleman

Nathaniel Hawthorne’s story “Rappaccini’s Daughter” is a nineteenth-century moral fable that sets the fruits of experimental knowledge against obligations to humanity, and stages a dramatic encounter between these two apparent goods. In many ways, the moral it offers seems familiar, and could be recognized by anyone with even a passing familiarity with contemporary bioethical debates. It features a mad scientist’s garden, a gorgeous but poisonous plant of his creation, and a lovely daughter who tends to his terrible plants, and who is—like the plant—both attractive and potentially infectious. The daughter receives the attentions of a naïve medical student, and she falls in love with him, but their fate is shadowed by the actions of not one but two bad scientist father-figures who experiment upon the younger characters and try to shape their (biological) destinies without their knowledge. But Hawthorne’s story does not simply anticipate, in an antique and allegorical way, contemporary defenses of human dignity and nature’s inviolability. Nor does it merely rehearse, with its private garden and unknowingly experimented-upon subjects, a Lockean notion of our own inevitable and natural possession of our bodies and the fruits of our lives and labor.

Hawthorne’s story puts the experimental subject at the center of its moral allegory, suffering both hopes and fears provoked by her own mutability, her own biological plasticity. That is, his titular character is no innocent pawn in the hands of the great scientist: she is an artificial being—grafted and forced—and deeply morally and biologically transformed from the very beginning; but because of this she is also able to reflect on her relations with others and her environment, and to mark (in this case, tragically) a new ethical frontier.

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

“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

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

Honors for Racist Scientists

September 7, 2017

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Historians like to say that everything has a history. Yet the natural sciences remain somewhat removed from academic debates over what to do with monuments tied to dark chapters in American history.

That’s changing, though.

In a twist to discussions about campus memorials linked to slavery and racism, the natural sciences are facing new questions about monuments tied to eugenics and to individuals who denied basic rights to those nonwhite people on whom they did research.

In one example, scientists and other academics lit up social media Wednesday in a response to an editorial in Nature called “Removing Statues of Historical Figures Risks Whitewashing History.” Some critics objected to the term “whitewashing” itself, saying that leaving memorials to eugenicists and other problematic figures unchallenged is the real whitewashing.

… Read More

Image: By ESO/M. Kornmesser (photo displayed on the magazine cover) – https://www.eso.org/public/images/ann16056a/ (photo displayed on the magazine cover), CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=50998461

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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

In Survey, Docs Say Unneeded Medical Care Is Common

September 7, 2017

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A national survey of more than 2,000 doctors across multiple specialties finds that physicians believe overtreatment is common and primarily perpetuated by fear of malpractice, as well as patient demand and some profit motives.

A report on the findings, published today in PLOS ONE, highlights physicians’ perspectives on unnecessary health care practices and the potential causes and solutions.

“Unnecessary medical care is a leading driver of the higher health insurance premiums affecting every American,” says Martin Makary, professor of surgery and health policy at the Johns Hopkins University School of Medicine and the paper’s senior author.

… Read More

Image: via Flickr AttributionShare Alike Some rights reserved by weiss_paarz_photos

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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

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 News

Nature Eds: Removing Statues of Historical Figures Risks Whitewashing History

September 6, 2017

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The statues of explorer Christopher Columbus and gynaecologist J. Marion Sims stand at nearly opposite corners of New York City’s Central Park, but for how much longer? Both monuments have been dragged into a nationwide debate about memor­ials to historical figures who have questionable records on human rights. The arguments are long-standing, but were thrown onto the world’s front pages last month when protests against the removal of a statue of Confederate General Robert E. Lee in Charlottesville, Virginia, produced racially charged violence.

Last week, the Central Park Sims statue — one of many that stand in numerous US cities — was vandalized. The word ‘racist’ was spray-painted alongside his list of achievements, which include life-saving techniques he developed to help women recover from traumatic births. Yet many protest about the lionization of this ‘father of modern gynaecology’ because he performed his experiments on female slaves.

… Read More

Image: By Infrogmation of New Orleans – Infrogmation of New Orleans, 19 May, 2017.Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=59320889

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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

Surrogacy opposed by leading English feminist. In Asia to find poor women who allowed themselves to be inseminated to provide children

Julie Bindel is an English lesbian feminist born in 1962, who British newspaper the “Independent” included on its 2010 list of the 101 most influential gay and lesbian people in Great Britain. Although she has not been an activist for same-sex marriage (because she believes that the State should not regulate these marriages), she says that she is indignant that some women are considered worthless or inferior. It is therefore clear to her that the surrogacy industry damages women and children, and she says that it should not be legalized in any country. She also warns that it can never be justified under the cover of “altruistic” cases, which are a mere trick to legitimize a million dollar business. She had been in India (see her statment *) and Cambodia visiting India’s surrogacy clinics to find out about the situation of poor women who allowed themselves to be inseminated and impregnated to provide children to “rich white Westerners”. She is now collaborating with the international platform “Stop Surrogacy Now” (surrogacy international campaign to avoid it), and together with other activists has visited Spain to ask that the country maintain its laws that do not recognize any type of gestational surrogacy (See HERE ).

  • I decided to visit four clinics in Gujarat, one of India’s most religious states – known as the country’s surrogacy capital – posing as a woman interested in hiring a surrogate and egg donor to gain access to those providing the services. I wanted to be able to speak from experience about the human rights abuses that result from the practice, and to become more involved in the international campaign to abolish it (The Guardian).

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

‘Being a burden’: a illegitimate ground for assisted dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Court of Appeal. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives ones private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include are intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time, and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers.

A recent systematic review of the literature concluded that 19-65% of terminally ill patients felt that they were a burden to others.  The 2016 Report relating to the Oregon Death with Dignity Act  concluded that 48.9% of patients whose lives were ended under the Act cited seeking an assisted death cited ‘being a burden’ as one of their concerns.

Concern about being a burden should not be a criterion to which any law relating to assisted dying should be permitted to have regard.

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

Happy Labor Day

As we enjoy the unofficial end of summer on this Labor Day, it’s good to remember those who do their difficult jobs well with little fanfare and in some cases, with some risk involved. One recent example is the case of Alex Wubbles, a Utah nurse who was arrested in July for simply following the basics of patient care when she stopped a police officer from taking blood from an unconscious patient without any warrant or consent.

If you have seen the troubling body-cam video of the incident, you can see the nurse calmly explain to the officer why she could not allow him to draw blood from the patient. During the confrontation, she spoke to her supervisor on the phone, who was able to confirm the correctness of her actions. Even this did not stop the officer from dramatically taking her into custody.

Clearly, this was an extraordinary occasion. However, we mustn’t miss an important point: Alex Wubbles put her patient’s rights first. By demonstrating patient-centered care, she valued the patient as a human being. This is medical care (and, by extension, bioethics) at its best. Even in the best of times, being a patient in the hospital can be a wearying and disorienting experience—all of the professionals coming in and out of the room, the strange sounding terminology, accompanied by the uneasy feeling that no one is listening to you. In the midst of it all, it is important to remember that the rights of the most vulnerable are as important as those of the most powerful.

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.