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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-0818L</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Clinical Decision-Making/ethics; patient advocacy; patient transfer/ethics; withholding treatment
Creator
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Ross LF
Description
An account of the resource
Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States. Copyright © 2020 by the American Academy of Pediatrics
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-0818L</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Clinical Decision-Making/ethics
December 2020 List
Patient Advocacy
patient transfer/ethics
Pediatrics
Ross LF
Withholding Treatment
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2013-3608D" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3608D</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Relational autonomy: moving beyond the limits of isolated individualism
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Adolescent Psychology; Personal Autonomy; Physician-Patient Relations; Pediatrics; Parents; Withholding Treatment; Professional-Family Relations; Communication; Child Psychology; Palliative Care; Psychological; Models
Creator
An entity primarily responsible for making the resource
Walter JK; Ross LF
Description
An account of the resource
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical practice. Reliance on an individualistic conception such as the "in-control agent" model prioritizes self-sufficiency in decision-making and highlights a decision-maker's capacity to have reason transcend one's emotional experience. An alternative model of autonomy, relational autonomy, highlights the social context within which all individuals exist and acknowledges the emotional and embodied aspects of decision-makers. These 2 conceptions of autonomy lead to different interpretations of several aspects of ethical decision-making. The in-control agent model believes patients or surrogates should avoid both the influence of others and emotional persuasion in decision-making. As a result, providers have a limited role to play and are expected to provide medical expertise but not interfere with the individual's decision-making process. In contrast, a relational autonomy approach acknowledges the central role of others in decision-making, including clinicians, who have a responsibility to engage patients' and surrogates' emotional experiences and offer clear guidance when patients are confronting serious illness. In the pediatric setting, in which decision-making is complicated by having a surrogate decision-maker in addition to a patient, these conceptions of autonomy also may influence expectations about the role that adolescents can play in decision-making.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3608D" target="_blank" rel="noreferrer">10.1542/peds.2013-3608D</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2014
Adolescent
Adolescent Psychology
Backlog
Child
Child Psychology
Communication
Female
Humans
Journal Article
Male
Models
Palliative Care
Parents
Pediatrics
Personal Autonomy
Physician-patient Relations
Professional-family Relations
Psychological
Ross LF
Walter JK
Withholding Treatment