1
40
5
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Text
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<a href="http://doi.org/10.1016/S0140-6736(14)60110-0" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(14)60110-0</a>
Dublin Core
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Title
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Self-requested euthanasia for children in Belgium
Publisher
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Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Young Adult; Palliative Care; Mental Competency; Personal Autonomy; Euthanasia; Choice Behavior; Minors; Europe; Belgium; Patient Rights; quality of life; adolescent; decision making; Active; Voluntary; Wedge Argument
Creator
An entity primarily responsible for making the resource
Dan B; Fonteyne C; de Cléty Stéphan Clément
Description
An account of the resource
In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been incorporated into national legislation in the past 20 years. The Belgian Act on Patients' Rights was promulgated in 2002. In the same year, the Belgian Act on Palliative Care was adopted, which grants access to palliative care that focuses on improving quality of ...
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(14)60110-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)60110-0</a>
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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
The nature or genre of the resource
Journal Article
2014
Active
Adolescent
Backlog
Belgium
Choice Behavior
Dan B
de Cléty Stéphan Clément
Decision Making
Europe
Euthanasia
Fonteyne C
Humans
Journal Article
Lancet
Mental Competency
Minors
Palliative Care
Patient Rights
Personal Autonomy
Quality Of Life
Voluntary
Wedge Argument
Young Adult
-
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/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-148</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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Ethical considerations in end-of-life care and research
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Mental Competency; Reproducibility of Results; Research; Ethics; quality of life; Palliative Care/ethics; Psychological; Stress; Multi-site Ethics; Decision Making/ethics; Empirical Research; Human Experimentation/ethics; Research Subjects; Terminal Care/ethics; Beneficence
Creator
An entity primarily responsible for making the resource
Casarett D
Description
An account of the resource
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-148</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
The nature or genre of the resource
Journal Article
2005
Backlog
Beneficence
Casarett D
Decision Making/ethics
Empirical Research
Ethics
Human Experimentation/ethics
Humans
Journal Article
Journal of Palliative Medicine
Mental Competency
Multi-site Ethics
Palliative Care/ethics
Psychological
Quality Of Life
Reproducibility of Results
Research
Research Subjects
Stress
Terminal Care/ethics
-
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/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.ccm.0000084805.15352.01</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
A name given to the resource
Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; infant; Male; United States; Mental Competency; Adult; Data Collection; Attitude of Health Personnel; Middle Aged; Professional-Family Relations; Euthanasia; Religion and Medicine; Legal Guardians; Morals; Intensive Care; Hospitals; Ethics; Teaching; Medical; decision making; Newborn; ICU Decision Making; Passive
Creator
An entity primarily responsible for making the resource
Hardart GE; Truog RD
Description
An account of the resource
OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical decision making. We sought to determine how physicians view the role of family interests in surrogate medical decision making. DESIGN: Cross-sectional mail survey. SETTING: Remote study.PATIENTS: Surveyed were neonatologists, pediatric intensivists, and medical intensivists affiliated with American medical schools. MEASUREMENTS AND MAIN RESULTS: A total of 327 (55%) of 596 surveys were returned; 35% of respondents were pediatric intensivists, 39% were neonatologists, and 26% were medical intensivists. The majority of respondents believed that family interests should be considered in decisions for incompetent patients, even if those interests are not necessarily important interests of the patient. Less than 10% preferred the traditional model in which the physician-patient relationship is exclusive and family interests are excluded. Medical intensivists, and those who described themselves as more religious, more opposed to healthcare rationing, and more protective of patients, tended to prefer patient-centered surrogate decision-making models. Physicians who treat children, especially neonatologists, were more accepting of family-centered surrogate decision-making models than were physicians who exclusively treat adults. CONCLUSIONS: A majority of the academic intensivists in our study believed that family interests should play an important role in medical decision making for incompetent patients. Our findings suggest that the traditional view of the physician-patient relationship may represent an overly simplistic model for medical decision making.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">10.1097/01.ccm.0000084805.15352.01</a>
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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
The nature or genre of the resource
Journal Article
2003
Adult
Attitude Of Health Personnel
Backlog
Child
Critical Care Medicine
Cross-sectional Studies
Data Collection
Decision Making
Ethics
Euthanasia
Female
Hardart GE
Hospitals
Humans
ICU Decision Making
Infant
Intensive Care
Journal Article
Legal Guardians
Male
Medical
Mental Competency
Middle Aged
Morals
Newborn
Passive
Professional-family Relations
Religion and Medicine
Teaching
Truog RD
United States
-
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/10.1136/jme.2002.000166" target="_blank" rel="noreferrer">http://doi.org/10.1136/jme.2002.000166</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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Research ethics committees and paternalism
Publisher
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Journal Of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Mental Competency; Paternalism; Risk Assessment; Research; Informed Consent; Moral Obligations; Altruism; Ethics Committees; Biomedical and Behavioral Research
Creator
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Edwards SJ; Kirchin S; Huxtable R
Description
An account of the resource
In this paper the authors argue that research ethics committees (RECs) should not be paternalistic by rejecting research that poses risk to people competent to decide for themselves. However it is important they help to ensure valid consent is sought from potential recruits and protect vulnerable people who cannot look after their own best interests. The authors first describe the tragic deaths of Jesse Gelsinger and Ellen Roche. They then discuss the following claims to support their case: (1) competent individuals are epistemologically and ethically in the best position to say which risks are reasonable for them, so RECs should be no more restrictive than the "normal" constraints on people taking risks with themselves; (2) RECs do not judge individual competence (that is for researchers and psychiatrists); (3) individual liberty is mostly limited by what serves the public interest, and RECs do not determine public interest; (4) RECs may have a paternalistic role in preventing exploitation of competent people vulnerable to the use of incentives, and in protecting the interests of incompetent people; however, (5) the moral and political authority of RECs has not been established in this respect.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/jme.2002.000166" target="_blank" rel="noreferrer">10.1136/jme.2002.000166</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
The nature or genre of the resource
Journal Article
2004
Altruism
Backlog
Biomedical and Behavioral Research
Edwards SJ
Ethics Committees
Humans
Huxtable R
Informed Consent
Journal Article
Journal of Medical Ethics
Kirchin S
Mental Competency
Moral Obligations
Paternalism
Research
Risk Assessment
-
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
November 2017 List
Notes
<p>1098-4275<br />Sisk, Bryan A<br />DuBois, James<br />Kodish, Eric<br />Wolfe, Joanne<br />Feudtner, Chris<br />Journal Article<br />United States<br />Pediatrics. 2017 Jun;139(6). pii: e20170234. doi: 10.1542/peds.2017-0234. Epub 2017 May 12.</p>
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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Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Decision Making; Dissent And Disputes; Parental Consent; Parent-child Relations; Pediatricians; Physician's Role; Adolescent; Child; Consensus; Female; Humans; Male; Mental Competency; Models Psychological
Creator
An entity primarily responsible for making the resource
Sisk BA; DuBois J; Kodish E; Wolfe J; Feudtner C
Description
An account of the resource
From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician's role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child's preference in decision-making so long as the child's decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.
Identifier
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10.1542/peds.2017-0234
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).
2017
Adolescent
Child
Consensus
Decision Making
Dissent And Disputes
DuBois J
Female
Feudtner C
Humans
Kodish E
Male
Mental Competency
Models Psychological
November 2017 List
Parent-child Relations
Parental Consent
Pediatricians
Pediatrics
Physician's Role
Sisk BA
Wolfe J