Tag: due process

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 It is expected that life support will be withdrawn in the days ahead.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 – Balancing Due Process and Patient Best Interest

In January 2017, clinicians at Great Ormond Street Hospital determined that continued life-sustaining medical treatment for Charlie Gard was not in his best interest.


Nevertheless, those clinicians continued administering that treatment for months as three levels of courts considered the issue.  Between April and June, the clinicians’ judgment was repeatedly confirmed by the UK High Court, the UK Court of Appeal, and the UK Supreme Court.

Now, the case is before the European Court of Human Rights.  Yesterday, the UK Supreme Court struggled with granting yet an additional stay pending the outcome of the ECHR proceedings.

This is not at all uncommon.  Many litigated medical futility conflicts preserve the status quo of life-sustaining treatment pending final resolution.  That regularly means that even dead patients (like Aden Hailu) are sustained for six months or longer pending adjudication.  This is a key reason that courts often recommend adjudication by ethics committees and other more nimble and responsive tribunals.

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

Unbefriended and Unrepresented: Better Medical Decision Making for Incapacitated Patients Without Healthcare Surrogates

How should we make medical decisions for incapacitated patients who have no available legally-authorized surrogate decision maker? Because these patients lack decision making capacity, they cannot authorize treatment themselves. Because they lack a surrogate, nobody else can authorize treatment either. Clinicians and researchers have referred to these individuals as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. Clinicians and researchers have also described them as “unimaginably helpless,” “highly vulnerable,” and as the “most vulnerable,” because “no one cares deeply if they live or die.”

The persistent challenges involved in obtaining consent for medical treatment on behalf of these individuals is an immense problem in ethics and patients’ rights. Some commentators describe caring for the unbefriended as “one of the most difficult problems in medical decision making.” Others call it the “single greatest category of problems” encountered in bioethics consultations.

Appropriately, this problem is getting more attention. Major policy reports from both legal and medical associations have focused on decision making for the unbefriended. Perhaps most notably, the elite mainstream media has repeatedly covered the problem of the unbefriended in the United States. Decision-making for the unbefriended has also been the primary topic of recent day-long or multi-day conferences, both themed, subject-specific conferences, and individual sessions at several national and regional professional association meetings.

Finally, the problem of the unbefriended has received increasing attention not only in the meeting halls of conferences, but also in the pages of academic literature. New articles have been printed in law journals, medical journals, nursing journals, long-term care journals, and bioethics journals.

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

Unbefriended and Unrepresented: Better Medical Decision Making for Incapacitated Patients Without Healthcare Surrogates

How should we make medical decisions for incapacitated patients who have no available legally-authorized surrogate decision maker? Because these patients lack decision making capacity, they cannot authorize treatment themselves. Because they lack a surrogate, nobody else can authorize treatment either. Clinicians and researchers have referred to these individuals as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. Clinicians and researchers have also described them as “unimaginably helpless,” “highly vulnerable,” and as the “most vulnerable,” because “no one cares deeply if they live or die.”

The persistent challenges involved in obtaining consent for medical treatment on behalf of these individuals is an immense problem in ethics and patients’ rights. Some commentators describe caring for the unbefriended as “one of the most difficult problems in medical decision making.” Others call it the “single greatest category of problems” encountered in bioethics consultations.

Appropriately, this problem is getting more attention. Major policy reports from both legal and medical associations have focused on decision making for the unbefriended. Perhaps most notably, the elite mainstream media has repeatedly covered the problem of the unbefriended in the United States. Decision-making for the unbefriended has also been the primary topic of recent day-long or multi-day conferences, both themed, subject-specific conferences, and individual sessions at several national and regional professional association meetings.

Finally, the problem of the unbefriended has received increasing attention not only in the meeting halls of conferences, but also in the pages of academic literature. New articles have been printed in law journals, medical journals, nursing journals, long-term care journals, and bioethics journals.

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

Drop the Kleenex and Put Your Hands Up

February 09, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

Drop the Kleenex and Put Your Hands Up

For the past week, mainstream, alternative, and social media outlets here in the United States and abroad have been consumed with discussion and debate about the legality and morality of President Trump’s recent travel ban. However, the so-called Muslim travel ban is not the only set of potentially controversial restrictions put into place recently.

Unbeknownst to most, the federal government is also planning to expand greatly the power of the US Centers for Disease Control and Prevention (CDC) to detain people who are suspected of carrying a dangerous communicable illness. Also known as quarantine – a term that comes from the Italian word for forty, in honor of the practice in Early Renaissance Venice to make trading vessels remain anchored offshore for 40 days before entering the port – the detention, isolation and even forcible treatment of those potentially exposed to a infectious disease like tuberculosis or Ebola is one of the most powerful and one of the most contentious tools in the public health arsenal.

The authority of local, state, and federal officials to do this comes from the parens patriae powers of the state. Latin for “parent of the nation, parens patriae refers to the legal doctrine that the government has a responsibility to protect those who cannot care for themselves. This includes, for example, the power of the state to intervene against an abusive or negligent parent.

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

Drop the Kleenex and Put Your Hands Up February 9, 2017 Unbeknownst to most, the federal gov…

February 09, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

Drop the Kleenex and Put Your Hands Up

For the past week, mainstream, alternative, and social media outlets here in the United States and abroad have been consumed with discussion and debate about the legality and morality of President Trump’s recent travel ban. However, the so-called Muslim travel ban is not the only set of potentially controversial restrictions put into place recently.

Unbeknownst to most, the federal government is also planning to expand greatly the power of the US Centers for Disease Control and Prevention (CDC) to detain people who are suspected of carrying a dangerous communicable illness. Also known as quarantine – a term that comes from the Italian word for forty, in honor of the practice in Early Renaissance Venice to make trading vessels remain anchored offshore for 40 days before entering the port – the detention, isolation and even forcible treatment of those potentially exposed to a infectious disease like tuberculosis or Ebola is one of the most powerful and one of the most contentious tools in the public health arsenal.

The authority of local, state, and federal officials to do this comes from the parens patriae powers of the state. Latin for “parent of the nation, parens patriae refers to the legal doctrine that the government has a responsibility to protect those who cannot care for themselves. This includes, for example, the power of the state to intervene against an abusive or negligent parent.

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

Procedural Due Process and Intramural Hospital Dispute Resolution Mechanisms: The Texas Advance Directives Act

Check out my newly-published analysis of end-of-life treatment conflicts:  “Procedural Due Process and Intramural Hospital Dispute Resolution Mechanisms: The Texas Advance Directives Act.”  


10 SAINT LOUIS UNIVERSITY JOURNAL OF HEALTH LAW & POLICY 93-158 (2017).


Increasingly, clinicians and commentators have been calling for the establishment of special adjudicatory dispute resolution mechanisms to resolve intractable medical futility disputes. As a leading model to follow, policymakers both around the United States and around the world have been looking to the conflict resolution provisions in the 1999 Texas Advance Directives Act (TADA).


In this article, I provide a complete and thorough review of the purpose, history, and operation of TADA. I conclude that TADA is a commendable attempt to balance the competing goals of efficiency and fairness in the resolution of these time-sensitive, life-and-death conflicts. But TADA is too lopsided. It is far more efficient than it is fair. TADA should be amended to better comport with fundamental notions of procedural due 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

In the Journals: February 2017 by Christine Sargent

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self.

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

Neil Gorsuch for the Supreme Court: His Bioethical Perspectives

By: Ashwini Nagappan

Neil Gorsuch was announced as President Trump’s nominee for the Supreme Court on 31st January 2017, leading many to examine his stance on prevailing controversial issues, such as end-of-life care and abortion. Answers may be found in his 2006 book, ‘The Future of Assisted Suicide and Euthanasia’, which showcases his opinion against euthanasia and the right to die. Whilst he is religious, his book relies not on theological arguments but well-substantiated, academic and philosophical principals to support his position. Should he be confirmed, many in the field will watch his progress with interest.

As he approaches the debate from his DPhil, Gorsuch claims, “all human beings are intrinsically valuable and the intentional taking of human life by private persons is always wrong.” Currently, the AMA allows physicians to withhold treatment and let patients die, but does not allow any direct intervention that would kill the patient, which is a system Gorsuch agrees with. But, there is a moral significance that differentiates both intentional acts of killing and letting die. When death is the lesser of two evils, perhaps it is permissible to provide a treatment that would reduce their pain, but still lead to their death. It may be more humane to quickly kill someone than put them through a slow, painful death.

Further, Gorsuch argues that institutionalizing a right to die might make people worse off. By giving patients this choice, they are deprived of not having a choice to make. They are now obliged to make a decision that once was not even existent.

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 social scientist’s guide to the Final Rule

On 18 January 2017, sixteen federal agencies announced revisions to the Federal Policy for the Protection of Human Subjects. As I noted earlier, this marks a huge victory for historians, who have spent the last 20 years working to end the inappropriate interference of IRBs with oral history research.

In addition, the final rule includes several provisions of note to scholars in the humanities and social sciences. Here are some of them; I don’t claim it is a complete list.

No biospecimens overhaul; less controversy

The final rule “does not adopt the proposal to require that research involving nonidentified biospecimens be subject to the Common Rule, and that consent would need to be obtained in order to conduct such research.” This was the target of the greatest criticism from groups like the National Academies of Sciences, Engineering, and Medicine and SACHRP. So while this change has little direct bearing on the work of social scientists and scholars in the humanities, it will likely reduce the controversy surrounding the regulatory reform as a whole.

The abandonment of the biospecimens proposal could also reduce opposition to reform by conservatives. The House Freedom Caucus opposed a new Common Rule on the grounds that it would cost $13.334 billion over 10 years. This figure seems to have been drawn from the NPRM’s quantified costs of $13.342 billion (using a 3 percent discount rate), and ignored the NPRM’s quantified benefits of $2.6 billion. If all the Freedom Caucus cares about is money, it may like the final rule a lot more.

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.