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07/14/2018

Parental Rights, Best Interests and Significant Harms: A Comparative Perspective on Medical Decision-Making on Behalf of Children

CALL FOR CONTRIBUTIONS - Parental Rights, Best Interests and Significant Harms: A Comparative Perspective on Medical Decision-Making on Behalf of Children

This collection has been inspired by the decision of the Court of Appeal in Great Ormond Street Hospital v Yates [2017] (the “Charlie Gard case”) and the case of Alfie Evans (Alder Hey Children’s NHS Foundation Trust v Evans and James [2018] EWHC 308 (Fam)). 

In these cases, the English courts affirmed the best interests test as both the basis for judicial intervention in parental decision-making in medical matters and the test to be applied in deciding on applications. However, alternative thresholds for intervention and different balances can be made in weighing up the rights and interests of the child, the parent’s rights and responsibilities and the role of medical  professionals and the courts. 

The collection seeks to bring together analyses from a range of jurisdictions across Europe, North and South America, Africa and Asia. In so doing, we can better appreciate the competing values that inform this debate. Our goal is to produce a volume that will be valuable to scholars across jurisdictions to inform their own local debate on how best to navigate such cases, but also to foster inter-jurisdictional debate on the issues. We are committed in producing the volume to promoting a truly comparative collection by including jurisdictions that take different approaches, but also by contextualizing both the differences and similarities by drawing out the cultural and social values that inform the approach in different countries.

The collection focuses specifically on how the law should regulate decisions about children in the context of medical care, particularly the point at which the courts may intervene in a dispute between medical professionals and parents.
Key questions in this are:
· What is the appropriate threshold for judicial intervention?
· What test should be applied by the courts to determine how a dispute should be resolved?
· What values do and should inform decisions?
· What is the normative basis for the threshold?
· To what extent should the law be in line with public views on these questions?
· How do cultural, social and religious forces shape the law’s approach on these questions?
· To what extent should this be the case?

The editors wish to produce a volume that addresses these questions both from distinct jurisdictional perspectives and via comparison between jurisdictions, a volume that coheres around these questions, rather than one that simply comprises a series of chapters, one about each jurisdiction selected.

The editors welcome suggestions for contributions from scholars from South America, Latin America, Africa, Middle
East and Asia.

The collection will be edited by Dr Imogen Goold, Professor Jonathan Herring and Ms Cressida Auckland (all based at
the University of Oxford, Faculty of Law) and will be published by Hart. Please contact Dr Imogen Goold (imogen.goold@law.ox.ac.uk) if you would like to discuss a potential contribution.

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This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

07/13/2018

Electronic Access to POLST Documentation Through HIE

Although the use of POLST forms is becoming more common, the development of POLST registries (either paper-based or electronic) is still relatively new.  The National Coordinator for Health Information Technology has issued a report that identifi...

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07/13/2018

Raiding the CRISPR

A couple of gene-editing news items from this week’s science literature: First, Nature reports that a group in my “back yard,” at the University of California San Diego, has tested gene editing using the CRISPR approach in mice.  Recall that CRISPR is an acronym for a particular molecular mechanism, first discovered in bacteria, that is …

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This entry was posted in Genetics, Health Care, Stem Cells and tagged , , , . Posted by Jon Holmlund. Bookmark the permalink.

07/12/2018

New Jewish Health Care Directive

Rabbi Jason Weiner, senior rabbi and director of the Spiritual Care Department at Cedars-Sinai Medical Center, has developed a new Jewish advance directive

Instead of simply listing which medical interventions one does or does not want, the Cedars-Sinai Jewish Advance Directive aims to capture the totality of a person’s values and preferences to be applied in various unforeseen circumstances. It gives patients an opportunity to describe their values. It tells clinicians who their patients are, what is important to them, and what is not important to them.

The Cedars-Sinai Jewish Advance Directive provides a range of options. For example, individuals can appoint their own rabbi or a Jewish institution to assist with decision-making; patients also can indicate whether they want to donate their organs. The document is drawn up in a manner that is acceptable by the strictest interpretations of Jewish law while, at the same time, not obligating patients to follow Jewish law if that is not their wish.

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This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

07/11/2018

Secret Twin Experiments & Bioethics.net 15 seconds of fame

by Craig Klugman, Ph.D.

On the advice of a family friend, I went to see the new documentary, Three Identical Strangers. All that I knew going into the story was that it was about a set of triplets, separated at birth who discover each other later in life. The first part of the film is about how they learned of each other. One ended up going to a small college where a second twin had been a student the previous year. A good friend was floored by the resemblance, especially when he learned that both men had the same birthdate and were adopted from the same agency.…

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07/11/2018

Risk and reproductive freedom

A recent article in The Atlantic titled “The Overlooked Emotions of Sperm Donation” discusses concerns about the emotional problems and conflicts that can occur in families that turn to sperm donation is a way of creating a child amid infertility. The article focuses mostly on heterosexual couples dealing with male infertility who have used sperm …

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This entry was posted in Health Care and tagged , . Posted by Steve Phillips. Bookmark the permalink.

07/11/2018

Nurse Accused of Fatally Poisoning Elderly Patient Says End-of-Life Care Was Tough

Japanese police are investigating 31-year-old nurse Ayumi Kuboki for murdering two patients. Sozo Nishikawa and Nobuo Yamaki died at the Yokohama Hajime Hospital in Yokohama in September 2016 after being administered a high concentration of the d...

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07/10/2018

Death Education in Schools

Physicians in Queensland, Australia are calling for death education to be taught in the classroom in a bid to demystify the processes of ageing and dying.

Among other things, AMA Queensland Chair of General Practice Dr Richard Kidd says that people should be creating Advance Care Plans as early as adolescence. Young people will also need to know how to make a will. “Including these sorts of issues or death education in science, legal studies, health and other school subjects will help build this understanding.”

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07/09/2018

Arguments Against Advance VSED for Severe Dementia

In this video from a recent Harvard Law conference Rebecca Dresser argues against advance directives for dementia.   "Beyond Disadvantage: Disability, Law, and Bioethics" Panel 2: Disability in the Beginning and the End of Life from Petrie-...

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07/08/2018

End of Life and Autonomy: The Case for Relational Nudges in End-of-Life Decision-Making Law and Policy

Megan S. Wright, JD, PhD, has been a Postdoctoral Associate in Medical Ethics at Weill Cornell Medical College and a Research Fellow at the Solomon Center for Health Law and Policy at Yale Law School. She will be at Penn State in the fall. Her new article in the Maryland Law Review is "End of Life and Autonomy: The Case for Relational Nudges in End-of-Life Decision-Making Law and Policy."

Autonomy is a central principle in many areas of health law. In the case of end-of-life decision-making law and policy, however, the principle of autonomy requires revision. On the whole, law conceptualizes autonomy at the end of life as an individual making private, personal decisions based solely on their interests and values, and independent of others. But ordinary people understand autonomous decisionmaking at the end of life differently, in a way that acknowledges the importance of their interpersonal relationships.

Social science research has documented that strengthening relationships with others, sharing responsibility in the decisionmaking process with healthcare providers, and taking care to not burden loved ones become important when confronting death and making decisions at the end of life. The divergence in how law and most people conceptualize autonomy becomes particularly consequential when people do not have decision-making capacity when an end-of-life decision must be made, and have not adequately planned in advance for loss of capacity. Failures of rationality explain this all too common situation: a fear and avoidance of death makes people less likely to plan for it, and even when they do plan, they are unable to anticipate every possible end-of-life scenario and their preferences for each scenario. 

In such cases, the law provides default processes and standards for end-of-life decisionmaking, which constitute a best guess of a surrogate decision-making process that will effectuate the principle of autonomy. However, in this default decision scheme, relational concerns are often accorded a different weight empirical studies. For example, state statutes may direct an incapacitated person’s surrogate to make end-of-life decisions in the context of the patient’s religious or moral beliefs but not explicitly instruct surrogates to consider the patient’s relationality. Thus, decisions made at the end of life may not accord with people’s values, preferences, and interests. Paradoxically, therefore, the current defaults in end-of-life law may impede, rather than promote, autonomy. 

In order to address this unintended consequence and make consistent the purpose and intended outcome of end-of-life decisionmaking law and policy, which is respect for autonomy, this Article argues for changes to accommodate the relational nature of autonomy at the end of life. Drawing on the law and behavioral economics literature about choice architecture, I argue that relational “nudges” should be built into end-of-life decision-making law and policy. 

The proposed nudges are meant to combat failures of rationality, promote a relational autonomy, and reduce negative externalities in end-of-life decisionmaking. These nudges would be designed to affect an individual’s end-of-life decisions prior to loss of capacity; a surrogate’s healthcare decisions in the absence of advance directives; and healthcare providers’ shared decisions with the patient or surrogate. 

While this necessitates changing some defaults, more consequentially, the nudges at the policy level would also change the way information and choices are presented to decisionmakers, such as patients and physicians, to prime the decisionmaker to decide, in part, based on relationality. These changes may increase the likelihood that end-of-life decisions are made in accordance with most persons’ stated preferences—namely that these decisions are shared with and made in consideration of others.

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