Tag: pain

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 It is expected that life support will be withdrawn in the days ahead.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

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

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.

Bioethics News

Latinos Left Out Of Clinical Trials … And Possible Cures

July 19, 2017

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Two decades ago, Luis Antonio Cabrera received devastating news: He likely had only three months to live.

The Puerto Rican truck driver, then 50, had attributed his growing leg pain to spending so many hours on the road. The real culprit was a malignant tumor in his left kidney that was pressing on nerves from his lower spine.

His initial treatment involved removing the organ, a complex surgery that, by itself, proved insufficient, as the cancerous cells had already spread to his lungs. Therefore, his primary care physician in Puerto Rico contacted doctors at the National Institutes of Health (NIH), in Bethesda, Md., and managed to enroll Cabrera in a medical study to test an innovative therapy: transplanting blood stem cells to destroy the cancer cells.

Today, at 70, Cabrera, a father of five and grandparent who moved to West Virginia with his wife to be closer to NIH, feels strong and healthy. “I come to do tests every six months — I’m like a patient at large,” he said.

… Read More

Image: Paula Andalo/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 News

Charlie Gard: Judge Allows Parents of Terminally Ill Infant to Consult American Doctor

A London High Court judge has ruled that terminally ill infant Charlie Gard can be examined by a doctor from the United States, amidst his parents’ battle to pursue experimental therapy abroad instead of the terminated life support prescribed by his British doctors. The 11-month-old infant was born with mitochondrial DNA depletion syndrome, a rare genetic condition that causes muscular degeneration, respiratory failure and motor skill decline. Most children with the disease fail to live past early childhood; Charlie’s doctors have stated that it will eventually cause his death.

In Britain, courts rather than parents dictate children’s best interests in the face of opposing medical advice. Though Charlie’s doctors at Great Ormond Street Hospital were granted court permission in April to remove the infant from life support, Charlie’s parents’ lawyers have since been advocating for the right to maintain life support and pursue alternative therapy despite his doctors’ insistence on the low likelihood of the proposed therapy’s effectiveness, and the high likelihood of lifelong pain with the disease.

The high-profile case has attracted the attention of President Trump, Pope Francis, and anti-abortion groups, all of whom have vocalized their support for Charlie’s parents interests. Several notable medical authorities and colleges have expressed their support for the hospital’s consensus or condemned the politicization of the case. 

Following the judge’s novel permission, a New York-Presbyterian Hospital/Columbia University Medical Center neurologist will evaluate the potential effectiveness of a nucleoside therapy that has successfully prolonged the lifespan of similarly ill patients, though such patients’ conditions have owed to a mutation distinct from Charlie’s.

The case pivots on several bioethical questions that are particularly acute in the context of terminal illness. Where should the law draw the line between parental authority and medical authority? Whose preferences speak for a voiceless patient?

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

Burke and Wills: Why We Might All Fear the Judgment in Charlie Gard

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

Donald’s wife, Melanie, is shattered. But she goes on the internet to see if anything can be done. She knows this is what Donald would want. She finds a world expert at a world class centre in Boston who has trialled a new treatment, X, on ten patients and has obtained significant results in one of them. She calls the expert and he tells her there is some chance of some improvement in her husband but it is low.

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

Pharmaceutical Company Removes Opioid Opana from Market Due to Addictiveness

Pharmaceutical company Endo has declared that it will be retracting its opioid Opana ER, a potent and addictive pain medication, from the market in light of a June 2017 FDA withdrawal request. Citing the drug’s “public health consequences of abuse,” the FDA appeal historically marked the first time the administration has cited drug abuse concerns in a drug withdrawal request. In a July 6th company news release about the pull, Endo reiterated its confidence in the “safety, efficacy, and favorable benefit-risk profile” of Opana when “taken as prescribed,” but stated that it will be voluntarily complying with the FDA request.

According to the Centers for Disease Control and Prevention, the US is confronting a sweeping opioid overdose epidemic that killed over 33 000 people in 2015 alone. The drug withdrawal could signify greater attention to the responsibilities of pharmaceutical companies in the face of bioethical challenges such as drug addiction and abuse.

Endo noted that it “has taken significant steps over the years to combat misuse and abuse,” which involved altering the Opana formula in 2012. It also changed the pills’ form into one more difficult for addicts to crush into a powder, which consumers can do to initiate a stronger high. Yet, data has indicated that many consumers alternatively inject the drug to achieve similar effects. Opana is considered twice as potent as the oft abused opioid OxyContin.

Like other opioids, Opana binds to the areas of the brain that manage pain and emotions. The medication combats pain by intensifying dopamine levels in such areas, and initiates strong euphoric feelings and pain relief that the brain becomes increasingly accustomed to over time.

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

My Sister’s Keeper: An Assessment of Living Organ Donation among Minors

by Alex Fleming

The 2009 film My Sister’s Keeper, based on Jodi Picoult’s 2004 New York Times bestselling novel which bears the same name, is among other things, a controversial story about a young girl (Anna Fitzgerald) who sues her own parents in order to obtain legal rights to the use of her body. For as long as she can remember, Anna has unwillingly been providing blood and bone marrow to her older and critically ill sister, Kate. As the story unfolds, tension within the family arises as the 13 year-old Anna Fitzgerald becomes fully aware of her reason for existence, so to speak, which is to prevent the death of her older sister by providing a regular supply of blood and bone marrow, which she has done regularly for several years. Later on, as Kate’s condition worsens and her renal function begins to fail, the parents naturally turn to Anna to provide what could be a life-saving kidney transplant for her older sister. The climax of the story begins as Anna confidently and heroically refuses. The story raises a slew of bioethical issues which are beyond the scope of this essay; however, the story sheds light on a topic worthy of discussion: living organ donation among minors.

As the supply of organs suitable for transplantation decreases and the demand for them increases, the question of living organ donation among those yet of age has become a question of greater concern, primarily among those who point to the various ethical implications which such a procedure creates.

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

Never Let an Ill Child Go to Waste

The Charlie Gard saga is one about which I’ve been reluctant to say anything, not least because plenty of other people have said plenty elsewhere.  Sometimes they add heat, and sometimes they add light.

Beneath everything, the story is fairly simple: a small child is terribly ill; it is agreed by medical opinion that continued treatment is not only not in his best interests but would cause him positive harm; the courts have determined that the withdrawal of treatment is warranted.  One sympathises with his parents’ fight to keep treatment going – but it does not follow from that that their opinions should be determinative.  Indeed, the courts having decided that Charlie’s treatment should not be withdrawn immediately in order to allow his parents more time with him risks making the case about them, rather than about him.  If treatment is not medically warranted and actually is harmful, there may be something worrisome about continuing it anyway for the sake of his parents.  Their distress is not going to lessened by prolonging the child’s treatment, and even if it were, it is not the proper focus here.

So that’s my hot take on the story itself.  I don’t think it’s anything too radical.  Yet the coverage of the case has been, in places, something of a trainwreck.  Take, for example, this piece from the Chicago Tribune (with thanks to Charles Erin for the pointer).  It’s fascinating for just how much it manages to get wrong, and how mawkish it is, and for what it does with the story to such unpleasant ends.

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.