Tag: death

Bioethics Blogs

Heads Up: Time to Say Goodbye to Football

by Craig Klugman, Ph.D.

Suppose a prescribed drug caused brain damage in 99.1% of people who took it. Would you take the drug? How long before that drug was pulled from the marketplace and the lawsuits against the manufacturer began? What if that drug made the company $7.2 billion per year? What if those who took the drug became celebrities for a brief period of time? Would you consider taking it then? Most rational people would refrain from the medication and the FDA would remove it from the market.

If you substitute the word “football” for “drug,” then you know the results of a new study in

JAMA, which definitively proves that football is bad for one’s health. In the study of 111 brains of former NFL players donated to the researchers, 110 (that’s 99.1% of the sample) showed evidence of chronic traumatic encephalopathy (CTE). Researchers examined a total of 202 donated brains. Ninety-one brains came from non-NFL players including those who played in pre-high school; high school; college, semi-pro, and Canadian Football League. Of those brains 66 showed evidence of CTE (72.5%). The percent of players with CFL increases with the level of football play (which is a substitute for number of years in the sport and number of likely concussions).

Level of PlayPercent of Brains Showing CTE
Pre-High School0%
High School21%
College91%
Semi-Pro64%
CFL88%
NFL99%
*Maez, Daneshvar, Kiernan 2017

The severity of the brain’s CTE was correlated with the level of play as well. One hundred percent of high school player’s brains had mild CTE and 86% of professional players had severe CTE.

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

Jump-Starting Hard Conversations As The End Nears

July 25, 2017

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Bannon had difficult end-of-life-care conversations with his parents, both in their mid-80s, before his mother’s diagnosis. During those  discussions, held at Bannon’s urging, his parents decided how far they wanted doctors to go to keep them alive should they become too sick to communicate. Bannon then documented their wishes.

“That helped so much, because you knew at least one thing was going to be taken care of,” said Bannon, 65, of San Francisco, whose mother survived and lives with Bannon’s father in Wethersfield, Conn.

Most Americans avoid end-of-life decisions, although some people may be more likely to make them if a doctor or social worker starts the discussion. In California, the state’s attorney general’s office offers an end-of-life planning checklist on its website. In the past few years, other websites have encouraged those conversations, with their own suggestions on how to get started.

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KHN

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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

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

Charlie Gard, Baby Doe and the Wisdom of Bill Bartholome

The family of Charlie Gard

The Charlie Gard case in the UK has captured international attention regarding the best interest of an 11-month old child with terminal illness whose parents and medical providers in London can’t agree on the best course of treatment and care.

The apparently irreconcilable disagreements between the parents and his care providers have extended from weeks into months and, according to the English news source The Telegraph on Wednesday, July 19, the impasse may likely continue. Reportedly, Mr. Justice Francis, the High Court judge managing the case, confirmed that they are “due to hold further hearings later this month,” following the much-awaited American neurologist’s examination of Charlie that took place earlier this week.

Should Charlie’s parents be granted permission, allowing him to receive the experimental treatment they seek on his behalf, or is what they seek not in Charlie’s best interest due to the severity of his illness and the uncertainty surrounding the benefit of the experimental treatment?
These difficult and highly emotional cases are not without precedent. An historical perspective may be helpful in exploring the ethical dimensions of how best to proceed in situations like these.

What follows is a reflection by Myra Christopher on the Center for Practical Bioethics’ work in developing Healthcare Treatment Decision Making for Minors, including infants, that is now more than two decades old.

– – – – – – – – – – –

“Don’t forget about children” was Bill Bartholome’s response when I asked, shortly before his death in 1999, how we could honor him.

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 News

First case of deceased donor uterine transplantation. It is a relevant medical and social issue

Being able to resolve the reproductive problems suffered by women who have no uterus – whether due to an organic cause or functional abnormality of the uterus – is unquestionably a major medical and social issue.

The two possible solutions to this problem are uterus transplantation or surrogacy, the latter solution presenting objective ethical difficulties.

Uterus transplants to date have been performed using living donors, with unpredictable outcomes. Now, the first case of deceased donor uterine transplantation performed in the United States has been published. The recipient of the uterus was a woman with Mayer-Rokitansky-Kuster-Hauser syndrome, that is, she had no uterus.

The journal Fertility and Sterility has disseminated a video describing the essential steps in this transplantation process, particularly as regards selection of a suitable donor with no history of infertility or uterine malformations. The death of the donor should be determined by presentation of brain death but not cardiac death. The authors concluded that: “Uterine transplantation, although currently experimental, has gained the potential to become the first true treatment for uterine factor infertility. This procedure can become a promising option for the approximately 1.5 million women worldwide for whom pregnancy is not possible because of the absence of the uterus or presence of a nonfunctional uterus. Deceased donor uterine transplantation will further serve to broaden accessibility for this treatment.”

Ethical approach

For our part, as the organ donor is a deceased person with brain death (see true definition of this death HERE), we see no ethical issue for this practice; on the contrary, it seems an encouraging medical prospect to resolve the reproductive problem of women who have no uterus or whose uterus is not functionally useful, although the risk-benefit balance must always be taken into account, especially as regards the surgical act.

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

Wong v. Glendale Adventist – Family Alleges Clinicians Deceived Them into Following Advance Directive

An interesting appeal is being briefed before the California Court of Appeal second district.


In 2011, Cecilia Hoh entered Glendale Adventist Medical Center complaining of a swollen foot. Plaintiff family members allege that they authorized the withdrawal of treatment, because GAMC falsely told them that Hoh had fatal lung cancer.


The plaintiffs alleged that they responsibly followed Hoh’s advance directive which stated “If I should have an incurable and irreversible condition that has been diagnosed by two physicians and that will result in my death within a relatively short time . . . I direct my attending physician . . . to withhold or withdraw treatment . . . .”


The lawsuit alleges that a false diagnosis caused them to make a bad decision. Since Hoh’s condition was neither incurable nor irreversible, her advance directive was not relevant.

An interesting appeal is being briefed before the California Court of Appeal second district.


In 2011, Cecilia Hoh entered Glendale Adventist Medical Center complaining of a swollen foot. Plaintiff family members allege that they authorized the withdrawal of treatment, because GAMC falsely told them that Hoh had fatal lung cancer.


The plaintiffs alleged that they responsibly followed Hoh’s advance directive which stated “If I should have an incurable and irreversible condition that has been diagnosed by two physicians and that will result in my death within a relatively short time . . . I direct my attending physician . . . to withhold or withdraw treatment . . . .”


The lawsuit alleges that a false diagnosis caused them to make a bad decision.

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

More about Charlie Gard

Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA).   By all means read it.

Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article.  He says the case is about “the best interest of the patient, financial interest, and scientific validity.”  On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients.  This caution seems wise.  As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases.  I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness.  My thought process runs through the checkpoints.  First, the patient’s wishes are paramount.  In this case, the patient cannot express wishes and may not be able to form them.  In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes.  Here, the parents are available to speak for the patient.  It would be only in the absence of a decision surrogate that “the best interests of the patient,” as judged by the physicians or the courts, would control.  Apparently British law grants rather more primacy to third parties, other than the patient and any surrogate decision-maker.  Under the rubric I’m used to, the parent’s wishes would control.  Here, the British authorities argue, they do not.

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

Trust, Communities, and the Standing to Hold Accountable

by Thomas Wilk 

ABSTRACT. During the 2016 US Presidential campaign and in the aftermath of the election of Donald Trump, many of us have tried to hold friends, family, and acquaintances accountable for their support of a candidate and campaign that we judged to be racist, xenophobic, sexist, transphobic, ableist, and authoritarian. Even when our friends and family avowed, for example, anti-racist norms, our attempts to hold them to those norms were often met with rejections of our standing to do so: What gives you the right to call me out for my vote? In this paper, I argue for the regrettable conclusion that these challenges to our standing to hold are, in at least some cases, justified on the grounds that the targets of our holdings have little evidence that we would allow ourselves to be reciprocally held accountable. As such, recognizing our standing to hold them accountable would be a threat to their agency. I conclude by arguing that we now ought to engage in a project of rebuilding the kinds of communities in which the mutual trust that is foundational to our moral practices can be rebuilt.

 

INTRODUCTION

Who are you to tell me what I should do? What gives you the right to order me around? How dare you call me a racist!? Many of us have heard these refrains over the course of the 2016 US Presidential campaign and since the election of Donald Trump. We try talk to Trump supporters—family, former classmates, hometown friends, and online acquaintances—about the racism, xenophobia, sexism, transphobia, ableism, and authoritarianism that some of us have judged to be endemic to his campaign and nascent administration.

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.