Charlie Gard’s parents make emergency appeal to European judges

The Guardian, 9 June 2017
Author: Owen Bowcott
“Established human rights law dictates that the rights of a child should take precedence over the rights of their parent, Hale stressed in her decision. “The child’s interests must prevail,” she said. Lawyers for the child’s guardian appointed by the court have argued against sending Charlie to the US, saying that the proposed treatment would be futile.”
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The Voluntary Nature of Decision-Making in Addiction: Static Metaphysical Views Versus Epistemologically Dynamic Views

Bioethics, 31: 349–359. 2017. doi:10.1111/bioe.12356
Authors: Racine, E. and Rousseau-Lesage, S.
“The degree of autonomy present in the choices made by individuals with an addiction, notably in the context of research, is unclear and debated. Some have argued that addiction, as it is commonly understood, prevents people from having sufficient decision-making capacity or self-control to engage in choices involving substances to which they have an addiction. Others have criticized this position for being too radical and have counter-argued in favour of the full autonomy of people with an addiction. Aligning ourselves with middle-ground positions between these two extremes, we flesh out an account of voluntary action that makes room for finer-grained analyses than the proposed all-or-nothing stances, which rely on a rather static metaphysical understanding of the nature of the voluntariness of action.”
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Debate Reponse: Charlie Gard, Interests and Justice – an alternative view

JME Blog, 26 April 2017
Author: Dominic Wilkinson
“The sad and difficult case of Charlie Gard, which featured in the media last week, is the latest in a series of High Court and Family court cases when parents and doctors have disagreed about medical treatment for a child. Doctors regard the treatment as “futile” or “potentially inappropriate”. Parents, in contrast, want treatment to continue, perhaps in the hope that the child’s condition will improve. In the Charlie Gard case, the judge, Justice Francis, rejected Charlie’s parents’ request for him to travel to the US for an experimental medical treatment. He ruled that life-sustaining treatment could be withdrawn, and Charlie allowed to die.”
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Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

JME Blog, 26 April 2017
Author: Julian Savulescu
“A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering. His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.”
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Is decision-making capacity an “essentially contested” concept in pediatrics?

Med Health Care and Philos (2017). doi:10.1007/s11019-017-9768-z
Authors: Eva De Clercq, Katharina Ruhe, Michel Rost, Bernice Elger
“Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit and critically reflect upon the current definitions of decision-making capacity.”
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Presumed consent: licenses and limits inferred from the case of geriatric hip fractures

BMC Medical Ethics 2017 18:17
Authors: Joseph Bernstein, Drake LeBrun, Duncan MacCourt, Jaimo Ahn
“Hip fractures are common and serious injuries in the geriatric population. Obtaining informed consent for surgery in geriatric patients can be difficult due to the high prevalence of comorbid cognitive impairment. Given that virtually all patients with hip fractures eventually undergo surgery, and given that delays in surgery are associated with increased mortality, we argue that there are select instances in which it may be ethically permissible, and indeed clinically preferable, to initiate surgical treatment in cognitively impaired patients under the doctrine of presumed consent.”
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Decision-making on behalf of people living with dementia: how do surrogate decision-makers

J Med Ethics 2017;43:35-40
Authors: Deirdre Fetherstonhaugh, Linda McAuliffe, Michael Bauer, Chris Shanley
“For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.”
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Perceived coercion to enter treatment among involuntarily and voluntarily admitted patients with substance use disorders

BMC Health Services Research 2016 16:656
Authors: Anne Opsal, Øistein Kristensen, John Kåre Vederhus, Thomas Clausen
“Perceived coercion is a sense of pressure related to the experience of being referred to treatment. The sense of pressure arises from the patient’s internal perception of coercion. The sources of coercion may be the legal system, the family, the health system, or self-criticism (internal sources). Here, we studied patients diagnosed with substance use disorders that were involuntarily admitted to hospital, pursuant to a social services act. We sought to determine whether these patients perceived coercion differently than patients that were admitted voluntarily.”
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