Tag: suffering

Bioethics News

Hard Lessons: Learning From The Charlie Gard Case

July 25, 2017

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 It is expected that life support will be withdrawn in the days ahead.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

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 It is expected that life support will be withdrawn in the days ahead.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

ASBH Lifetime Achievement Awards & Cornerstone Awards – Bioethics and Medical Humanities

Lifetime Achievement Awards

ASBH announces two Lifetime Achievement Awards for longstanding achievement by an individual in bioethics and/or the medical humanities. Both recipients will make remarks at the 2017 ASBH Members’ Meeting and Award Presentations, Friday, October 30, 3:45 pm in Kansas City, MO.

Myra Christopher is recognized as the first leader of the Center for Practical Bioethics (CPB), an applied, real-world bioethics organization emphasizing ethics and action informed by thoughtful reflection, guided by academic discipline. Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.

Steven Miles, MD is honored for three and a half decades of research and education. He has published 6 books and over 160 articles and chapters on a breathtaking array of issues, an extraordinary contribution to bioethics scholarship. His career is also distinguished by the impact of his work beyond academia and his devotion to the reform needed to alleviate suffering, especially in contexts affecting the most vulnerable members of our global society.

Cornerstone Awards

ASBH announces two Cornerstone Awards for enduring contributions by an institution to the fields of bioethics and/or the medical humanities. These awards will be presented at the 2017 ASBH Members’ Meeting and Award Presentations.

For over 25 years, The ANA Center for Ethics and Human Rights has advocated for social justice and the protection of human rights and tirelessly provided ethical guidance, both theoretical and practical, at the state, national, and international levels.

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

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

Don’t Feed the Trolls: Bold Climate Action in a New, Golden Age of Denialism

by Marcus Hedahl and Travis N. Rieder

ABSTRACT. In trying to motivate climate action, many of those concerned about altering the status quo focus on trying to convince climate deniers of the error of their ways. In the wake of the  2016 Election, one might believe that now, more than ever, it is tremendously important to convince those who deny the reality of climate science of the well-established facts. We argue, however, that the time has come to revisit this line of reasoning.  With a significant majority of voters supporting taxing or regulating greenhouse gases, those who want to spur climate action ought to focus instead on getting a critical mass of climate believers to be appropriately alarmed. Doing so, we contend, may prove more useful in creating the political will necessary to spur bold climate action than would engaging directly with climate deniers.

Less than a month after the 2016 presidential election, incoming White House Chief of Staff Reince Priebus stated that climate change denialism would be the “default position” of the Trump administration (Meyjes 2016). In March 2017, Scott Pruit, President Trump’s choice to lead the Environmental Protection Agency, expressed his belief—contrary to the estabilished scientific consensus—that carbon dioxide was not one of the primary contributors of climate change (Davenport 2107). Given this existence of climate denialism at the highest reaches of U.S. government, one might believe that, now more than ever, it is tremendously important to convince those who deny the reality of climate science of the well-established facts.[1] Surely, with truth on our side, we must trumpet the evidence, making deniers our primary target and acceptance of the truth of climate change our primary goal.

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

Revising the Ethical Framework for Deep Brain Stimulation for Treatment-Resistant Depression

By Somnath Das

Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 

Despite the prevalence of therapeutics for treating depression, approximately 20% of patients fail to respond to multiple treatments such as antidepressants, cognitive-behavioral therapy, and electroconvulsive therapy (Fava, 2003). Zeroing on an effective treatment of “Treatment-Resistant Depression” (TRD) has been the focus of physicians and scientists. Dr. Helen Mayberg’s groundbreaking paper on Deep Brain Stimulation (DBS) demonstrates that electrical modulation an area of the brain called subgenual cingulate resulted in a “sustained remission of depression in four of six (TRD) patients” These patients experienced feelings that were described as “lifting a void,” or “a sudden calmness.” (Mayberg et al. 2005). The importance of this treatment lies in the fact participants who received DBS for TRD (DBS-TRD) often have no other treatment avenues, and thus Mayberg’s findings paved the way for DBS to have great treatment potential for severely disabling depression. 

Image courtesy of Wikimedia Commons
Because DBS involves the implantation of electrodes into the brain, Dr. Mayberg and other DBS researchers faced intense scrutiny following publication of their initial findings regarding the ethics of using what to some seems like a dramatic intervention for TRD.

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

Speculation, Certainty and the Diagnostic Illusory: The Tricorder and the Deathless Man by Thierry Jutel

In the paragraphs which follow, we will be discussing the ways in which two pieces of speculative fiction, the science fiction film Star Trek IV: The Voyage Home, and the novel The Tiger’s Wife use diagnostic and prognostic certainty as part of their creative narratives. In both cases, the confidence vested in the diagnosis and its outcome is contrasted to the “diagnostic illusory” of contemporary medicine.

Even while diagnosis is medicine’s primary classification tool, it is far less circumscribed than diagnostic taxonomies suggest, as well as the power afforded those who diagnose. Even very material conditions have porous boundaries (Jutel 2013) which muddy the waters in a system that is based on tidy categories. Sarah Nettleton and her colleagues have developed the term “diagnostic illusory” to describe how medicine invests in generalisation as a way of understanding disease. In the diagnostic illusory, for the cases that resists classification, or perturb a diagnostic category, one turns to ever-more sophisticated forms of technology, with the belief that it’s just a matter of time before the explanation will become clear, and the diagnosis justified. Nettleton and her colleagues raise the idea of “illusory” to highlight the “ambiguities and nuanced complexities associated with the biomedical imperative to name and classify” (Nettleton, Kitzinger, and Kitzinger 2014).

In this short essay, we will explore how two speculative texts represent diagnosis, highlighting through their respectively futuristic and supernatural approaches the yearnings of contemporary medicine, and the society it serves, for diagnostic certainty.

 

Star Trek IV: The Voyage Home and the Tricorder

In the science fiction epic Star Trek IV: The Voyage Home (Nimoy 1986), the Starship Enterprise and its crew have come back to planet earth in 1986 to save the humpback whale from extinction and by extension, to save planet earth from destruction 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 News

CHARLIE GARD: 37 European deputies stand against the European Court of Human Rights decision

In an open letter, 37 Eurodeputies support Charlie Gard and his parents and demand the respect of the right to live (see original letter signed at Strasbourg and titled, Charlie Gard must be given right to life, human dignity)

After the decision of the British Courts and of the European Court of Human Rights, the support provided by parenteral respiratory, nutrition and hydration assistance to Charlie Gard, the 10-months-old baby suffering from mitochondrial encephalopathy, can be suspended. This will lead to the certain death of the child. 37 European deputies[1]  have signed an open letter to express their “concern about the scandalous outcome of Charlie’s case, which violates the most fundamental European values, in particular, the right to live, the right to human dignity and to personal integrity”. In this case, they denounce “the approval of the successive courts to interrupt his supportive care, including nutrition and hydration”, ending with the European Court of Human Rights (ECHR), last recourse for Charlie Gard’s parents.

The European signatory deputies condemn a shameful behaviour which violates “the values of our civilised society” when a country “does not act in the best interest of its people”. They have committed themselves to oppose such practices with a firm “no”. (Genethiques informs you)

Eurodeputies stand against European Court of Human Rights names,

[1] The signatory deputies: Miroslav Mikolášik MEP, Luigi Morgano MEP, Laurentiu Rebega MEP, Laima Andrikiene MEP, Elisabetta Gardini MEP, Ivan Štefanec MEP, Lara Comi MEP, Marijana Petir MEP, Lorenzo Fontana MEP, Nicola Caputo MEP, Tunne Kelam MEP, Marek Jurek MEP, Beatrix von Storch MEP, Franc Bogovič MEP, Patricija Šulin MEP, Pavel Svoboda MEP, György Hölvenyi MEP, Michal Boni MEP, Jan Olbrycht MEP, Zbigniew Kuzmiuk MEP, Jadwiga Wiśniewska MEP, Thomas Mann MEP, Annie Schreijer-Pierik MEP, Daniela Aiuto MEP, Alojz Peterle MEP, Branislav Škripek MEP, Enrico Gasbarra MEP, Anna Záborská MEP, Arne Gericke MEP, Steven Woolfe MEP, Mylene Troszczynski MEP, Lars Adaktusson MEP, Remo Sernagiotto MEP, József Nagy MEP, Pál Csáky MEP Marek Plura MEP, Robert Jaroslaw Iwaszkiewicz MEP.

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: 37 European deputies stand against the European Court of Human Rights decision

In an open letter, 37 Eurodeputies support Charlie Gard and his parents and demand the respect of the right to live (see original letter signed at Strasbourg and titled, Charlie Gard must be given right to life, human dignity)

After the decision of the British Courts and of the European Court of Human Rights, the support provided by parenteral respiratory, nutrition and hydration assistance to Charlie Gard, the 10-months-old baby suffering from mitochondrial encephalopathy, can be suspended. This will lead to the certain death of the child. 37 European deputies[1]  have signed an open letter to express their “concern about the scandalous outcome of Charlie’s case, which violates the most fundamental European values, in particular, the right to live, the right to human dignity and to personal integrity”. In this case, they denounce “the approval of the successive courts to interrupt his supportive care, including nutrition and hydration”, ending with the European Court of Human Rights (ECHR), last recourse for Charlie Gard’s parents.

The European signatory deputies condemn a shameful behaviour which violates “the values of our civilised society” when a country “does not act in the best interest of its people”. They have committed themselves to oppose such practices with a firm “no”. (Genethiques informs you)

Eurodeputies stand against European Court of Human Rights names,

[1] The signatory deputies: Miroslav Mikolášik MEP, Luigi Morgano MEP, Laurentiu Rebega MEP, Laima Andrikiene MEP, Elisabetta Gardini MEP, Ivan Štefanec MEP, Lara Comi MEP, Marijana Petir MEP, Lorenzo Fontana MEP, Nicola Caputo MEP, Tunne Kelam MEP, Marek Jurek MEP, Beatrix von Storch MEP, Franc Bogovič MEP, Patricija Šulin MEP, Pavel Svoboda MEP, György Hölvenyi MEP, Michal Boni MEP, Jan Olbrycht MEP, Zbigniew Kuzmiuk MEP, Jadwiga Wiśniewska MEP, Thomas Mann MEP, Annie Schreijer-Pierik MEP, Daniela Aiuto MEP, Alojz Peterle MEP, Branislav Škripek MEP, Enrico Gasbarra MEP, Anna Záborská MEP, Arne Gericke MEP, Steven Woolfe MEP, Mylene Troszczynski MEP, Lars Adaktusson MEP, Remo Sernagiotto MEP, József Nagy MEP, Pál Csáky MEP Marek Plura MEP, Robert Jaroslaw Iwaszkiewicz MEP.

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.