Tag: wills

Bioethics News

Few Americans Plan For End-of-Life Decisions, Even If They Are Sick

Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term.

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

Many Still Sidestep End-Of-Life Care Planning, Study Finds

For the analysis, published in the July issue of Health Affairs, researchers reviewed 150 studies published from 2011 to 2016 that reported on the proportion of adults who completed advance directives, focusing on living wills and health care power-of-attorney documents

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

The ethics of treatment for Charlie Gard: resources for students/media

by Dominic Wilkinson and Julian Savulescu

 

The case of Charlie Gard continues to attract intense public attention. It raises a number of challenging and important ethical questions.

The 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, but agree on 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.

We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available.

 

Legal material on the case

Blogs

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, Briggs and Wills: Why we should not fear the judgment in Charlie Gard

In a blog post today, Julian Savulescu argues that in a parallel adult version of the highly controversial Charlie Gard case, a UK court might thwart an unconscious patient’s previously expressed desire for self-funded experimental medical treatment. He finds the Gard decision deeply disturbing and suggests that we all have reason to fear the Charlie Gard judgment.

I respectfully beg to differ.

Julian’s thought experiment of the billionaire ‘Donald Wills’ is not analogous to the real Charlie Gard case, his analysis of the UK legal approach to best interests cases for adults is potentially mistaken, his fear is misplaced.

Wills and Gard

Thought experiments are an important tool in philosophy and medical ethics. They enable us to analyse our intuitive responses to ethical questions. Comparing parallel cases – for example as James Rachels did in his now famous 1975 paper ‘Active and Passive Euthanasia’ – can helpfully identify factors that are relevant to ethical analysis, as well as factors that aren’t relevant. However, like scientific experiments, thought experiments need to be carefully designed. Otherwise they can mislead.

Julian imagines a wealthy adult patient, Donald Wills, who has a rare mitochondrial illness very similar to Charlie Gard. While Wills’ wife has identified a potential treatment and requested that he be transferred overseas for an experimental treatment, the imaginary court, in a decision parallel to the Gard case, finds that this treatment would not be in Donald’s best interests. The judge denies the request and Donald’s treatment is withdrawn.

However, in a divergence from the Gard case, Julian tells us that Wills

“wishes to live as long as possible.

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 Blogs

A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone

Check out this free webinar by Linda J. Camp on June 12: “A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone.”  


Talking about the last life chapters isn’t easy for anyone, but it is especially difficult for “solos;” older adults who lack the traditional family support structure.  When crafting wills, trusts, Powers of Attorney and Advance Care Directives, members of this group struggle with who to designate as a surrogate. Solos “with capacity,” are a largely invisible but growing group.  Come hear about and discuss the foundational work on this issue that is underway in Minnesota.


Objectives:

  • Gain awareness and understanding of the diverse personal circumstances and diverse perspectives of solo older adults
  • Explore the unique issues, needs, gaps, and barriers faced by solos in planning for late-life
  • Learn about replicable work in Minnesota directed toward implementing practical solutions for solos
  • Discuss opportunities to contribute to current research

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 Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone

Check out this free webinar by Linda J. Camp on June 12: “A Backup Plan for Solo Seniors: Health Care Decision Making for People Aging Alone.”  


Talking about the last life chapters isn’t easy for anyone, but it is especially difficult for “solos;” older adults who lack the traditional family support structure.  When crafting wills, trusts, Powers of Attorney and Advance Care Directives, members of this group struggle with who to designate as a surrogate. Solos “with capacity,” are a largely invisible but growing group.  Come hear about and discuss the foundational work on this issue that is underway in Minnesota.


Objectives:

  • Gain awareness and understanding of the diverse personal circumstances and diverse perspectives of solo older adults
  • Explore the unique issues, needs, gaps, and barriers faced by solos in planning for late-life
  • Learn about replicable work in Minnesota directed toward implementing practical solutions for solos
  • Discuss opportunities to contribute to current research

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

Changing the Paradigm of Advance Directives to Avoid Prolonged Dementia

by Norman L. Cantor In the early days of living wills — the 1970’s and 1980’s – a major objective was to avoid being maintained on burdensome medical machinery in a highly debilitated status at the end stage of a … Continue reading

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

What is Feminist Neuroethics About?

By Ben Wills

Ben Wills studied Cognitive Science at Vassar College, where his thesis examined cognitive neuroscience research on the self. He is currently a legal assistant at a Portland, Oregon law firm, where he continues to hone his interests at the intersections of brain, law, and society.
As the boundaries of what may be considered “neuroethics” extend with the development of new kinds of technologies and the evolving interests of scholars, its branches encounter substantial structures of adjacent scholarship. “Feminist neuroethics” is a multidimensional construct and a name that can be afforded both to approaches that fall within the bounds of mainstream neuroethics and metatheoretical challenges to the scope and lines of debate within neuroethics. While acknowledging that scholarship at the intersections of academic feminism/gender studies, feminist science studies, ethics, and neuroscience is much more substantial and diverse than I’m considering here, my modest aim in this post is to highlight how the label “feminist neuroethics” has been used to look at what scholars consider important for neuroethics. In so doing we can see what scholars in these fields see as worth highlighting when identifying their work as such.

The phrase “feminist neuroethics” is young, first used (to my knowledge) in peer-reviewed literature by philosopher Peggy DesAutels in her 2010 article on “Sex differences and neuroethics,” published in Philosophical Psychology (though see Chalfin, Murphy, & Karkazis, 2008 for a close antecedent). She writes that, having found herself considering the ethics of neuroscience, the neuroscience of ethics, and sex/gender differences, her “overlapping approach could neatly be summarized as feminist neuroethics” (p.

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.