Tag: life

Bioethics Blogs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

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

‘A bit of a compromise’: Coming to terms with an emergency caesarean section by Terena Koster

During the midwife-hosted antenatal class Cath attended in a private hospital in Cape Town, South Africa, where she would eventually give birth, pregnant women were encouraged to name the kind of birth they wanted. They were presented with three options: “natural all the way with no medication”, “natural but open to medication”, or “elective caesarean”. The ‘choice’ women were expected to make featured as an important point of concern in their antenatal care and in their preparations for birth.

Hannah, a participant in the class, recalls a particularly striking moment when the midwife went around the room and pointed at each of the participants and asked, “Who is your gynae”. She went on to predict diverse birth outcomes, irrespective of participants’ stated intentions to birth vaginally. For Hannah this was an “eye opening” experience. A first time mother, she was now invited into a highly politicised birthing environment. Hannah had been uncertain about what kind of birth she wanted, but at 8 months pregnant she had decided on a ‘natural’ birth as opposed to a ‘caesarean’, with the caveat that in the event that an emergency caesarean section was a likely outcome, she would proactively opt for an elective caesarean.

At 39 weeks and near the end of her pregnancy, she found herself sitting opposite her obstetrician who told her there was “a real threat of the umbilical cord wrapping around [the baby’s] neck as she … drop[s] down,” adding that because the baby was “so big” there was “a high likelihood of [Hannah] tearing”. For the first time, the obstetrician instructed her to make a birthing decision: to continue trying for a vaginal birth or to opt for an elective caesarean section.

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

Press Release – “Vale Charlie” Prof Julian Savulescu

Vale Charlie

At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

 

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds. There were also the means to control and minimise Charlie’s suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.

 

Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.

 

4 months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.

 

No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie’s interests at heart, and Connie and Chris, but most of all Charlie.

It has also raised other issues.

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

Choosing to Die – Phyllis Shacter on VSED

Check out this broadcast on Wednesday July 26 on Good Grief with Cheryl Jones.


Phyllis Shacter’s husband made a series of radical choices about how his life would end. When he received two life limiting diagnoses within six weeks of each other, Alzheimers and cancer, he refused cancer treatment and employed natural methods instead. He planned and participated in his own funeral and followed what he believed was best for him, choosing to stop eating and drinking before he was unable to consciously decide how his life would end.


Throughout all of these experiences and decisions, he had a supporter and advocate in his wife Phyllis. Understanding the choices he was making, she stood as a pillar to his right to end life in the way that was right for him. He left her with a mission; by sharing his story, she would contribute to the conversation on end of life options. Powered by her love of him and the peace and beauty he felt at the end of his life, she speaks powerfully for taking our lives in our own hands and fully exploring what is best for each of us.

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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

Cholera Is Slaughtering Yemen and We’re Letting It Happen

July 21, 2017

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But the Haitian debacle, in which United Nations Peacekeepers carried the Vibrio cholerae in their bodies from Nepal, passing the bacteria into local streams to spawn a massive epidemic that continues today, spread in a nation shattered by natural disaster. There is nothing “natural” about the carnage of Yemen: This is war, waged from 10,000 feet by Saudi bombers that have damaged or destroyed every hospital, clinic, water treatment plant, pumping station, and sewer system from Sanaa to Ibb.

According to the World Health Organization (WHO), 14.5 million Yemenis no longer have access to clean water: Cholera is a water-borne disease. UN officials reckon 17 million Yemenis are “one step away from famine,” civil war rages across the land, the region is locked in a climate change-compounded record drought, and the country’s Arab neighbors feed the flames with steady flows of arms and carpet-bombing campaigns.

Every day the WHO issues a new, always grimmer data set, estimating the toll cholera is taking. Inside the country, humanitarian groups and Yemeni medical personnel stack ailing men, women, and children three and four to a bed, hooking each one up to life-sparing hydration IV drips, even as the sound of gunfire and bombings resonate outside meager facilities.

… Read More

Image: By yeowatzup from Katlenburg-Lindau, Germany – San’a, Yemen, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=24520831

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Climate Policy in the Age of Trump

by Mathias Frisch

ABSTRACT. The Trump administration is in the process of undoing what were the two central planks of President Obama’s climate policy: First, Trump has called for a review of how the social cost of carbon is calculated in used in analyses of regulatory rule making and, second, Trump has announced that the United States is withdrawing from the Paris Agreement. In this paper I examine some of the conservative critics’ objections to the first plank: calculations of the social cost of carbon in climate cost benefit analyses. I argue that while some of these criticisms are justified, the criticisms end up strengthening arguments for the importance of the second plank: the urgent need for an ambitious climate policy, in accord with the Paris Agreement, as precaution against exposing others to the risk of catastrophic harms.

1. INTRODUCTION

As the record-breaking heat of 2016 continues into 2017, making it likely that 2017 will be the second hottest year on record just behind the El Niño year 2016, and as Arctic heat waves pushing the sea ice extent to record lows are mirrored by large scale sheets of meltwater and even rain in Antarctica—the Trump administration is taking dramatic steps to undo the Obama administration’s climate legacy.

In its final years, the Obama administration pursued two principal strategies toward climate policy. First, by signing the Paris Accord it committed the U.S. to contribute to global efforts to hold “the increase in the global average temperature to well below 2°C above pre-industrial levels and to pursue efforts to limit the temperature increase to 1.5°C above pre-industrial levels” (United Nations Framework Convention on Climate Change 2017, Article 2a).

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

Refugees, Narratives, or How To Do Bad Things with Words

By Anna Gotlib

ABSTRACT. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine some of this election’s cruelest, most violent, and most racist rhetoric, reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future. To that end, I problematize the representations and treatment of refugees within the United States from three distinct groups: European Jewish refugees of the Second World War; the Eastern Bloc refugees of the mid- and late twentieth century; and the current Syrian, largely Muslim refugees. I begin by defining the concepts of homelessness and moral luck. Second, I examine the three varying histories of refugee policies in the context of these two notions. Finally, I conclude with a combination of despair and hope: First, I offer a few observations about the role of language in the recent presidential election; second, I propose alternatives to the resulting linguistic and political violence by extending Hilde Lindemann’s notion of “holding” into sociopolitical contexts.

“How odd I can have all this inside me and to you it’s just words.”
― David Foster Wallace, The Pale King

I.  Introduction

The American election of 2016 was, in its vitriol, polarization, and outcome, unlike any in recent memory. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine and confront the fact that some of this election cycle’s cruelest, most violent, and most racist rhetoric was reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future.

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.