1
40
16
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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
A name given to the resource
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1080/08880018.2020.1759738" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/08880018.2020.1759738</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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Characteristics of parental decision-making for children with advanced cancer who are offered enrollment in early-phase clinical trials: A systematic review
Publisher
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Pediatric Hematology and Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
informed consent; decision-making; communication; pediatric oncology; phase I trial
Creator
An entity primarily responsible for making the resource
Le Rouzic M A; Claudot F
Description
An account of the resource
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child's previous cancer experience. It is highly impacted by the quality of physicians' communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians' training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial. Copyright © 2020, © 2020 Taylor & Francis Group, LLC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/08880018.2020.1759738" target="_blank" rel="noreferrer noopener">10.1080/08880018.2020.1759738</a>
Rights
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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
Claudot F
Communication
Decision-making
Informed Consent
Le Rouzic M A
Oncology 2020 List
Pediatric Hematology And Oncology
Pediatric Oncology
phase I trial
-
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
October 2019 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
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203</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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The experiences of bereaved family caregivers with advance care planning for children with medical complexity
Publisher
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Paediatrics and Child Health (Canada)
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; male; genetic transcription; clinical article; health care personnel; advance care planning; conference abstract; caregiver; human tissue; consultation; perception; semi structured interview; content analysis; conversation; informed consent; personal experience
Creator
An entity primarily responsible for making the resource
Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J
Description
An account of the resource
BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as "the process of discussing life-sustaining treatments and establishing long-term care goals." Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver's views. Bereaved caregivers have the unique ability to reflect upon ACP through their child's whole disease course and end of life experience. OBJECTIVE(S): To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child's death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers' experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULT(S): 13 bereaved caregivers of CMC completed 12 interviews ranging from 40-80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver's feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION(S): Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.
Rights
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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).
2019
Advance Care Planning
Amin R
Caregiver
Child
Clinical Article
Cohen E
conference abstract
Consultation
Content Analysis
Conversation
Death
Female
genetic transcription
Health Care Personnel
Hellman J
Human
Human Tissue
Informed Consent
Lord S
Male
Moore C
Netten K
October 2019 List
Orkin J
Paediatrics and Child Health (Canada)
Perception
Personal Experience
Rappaport A
Semi Structured Interview
-
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/10.1080/07481180601152443" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481180601152443</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
Using drugs to end life without an explicit request of the patient
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Netherlands; Intention; Informed Consent; Ethics; Suicide; Medical; Belgium; Denmark; adolescent; 80 and over; decision making; Switzerland; Assisted/ethics/legislation & jurisprudence/psychology; Euthanasia/ethics/legislation & jurisprudence/psychology; Mental Competency/legislation & jurisprudence; Patient Participation/legislation & jurisprudence/psychology; Physician's Practice Patterns/ethics; Terminal Care/ethics/legislation & jurisprudence/psychology
Creator
An entity primarily responsible for making the resource
Rietjens JA; Bilsen J; Fischer S; van der Heide A; van der Maas PJ; Miccinessi G; Norup M; Onwuteaka-Philipsen BD; Vrakking AM; van der Wal G
Description
An account of the resource
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07481180601152443" target="_blank" rel="noreferrer">10.1080/07481180601152443</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
2007
80 And Over
Adolescent
Adult
Aged
Assisted/ethics/legislation & jurisprudence/psychology
Backlog
Belgium
Bilsen J
Death studies
Decision Making
Denmark
Ethics
Euthanasia/ethics/legislation & jurisprudence/psychology
Female
Fischer S
Humans
Informed Consent
Intention
Journal Article
Male
Medical
Mental Competency/legislation & jurisprudence
Miccinessi G
Middle Aged
Netherlands
Norup M
Onwuteaka-Philipsen BD
Patient Participation/legislation & jurisprudence/psychology
Physician's Practice Patterns/ethics
Questionnaires
Rietjens JA
Suicide
Switzerland
Terminal Care/ethics/legislation & jurisprudence/psychology
van der Heide A
van der Maas PJ
van der Wal G
Vrakking AM
-
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.2006.0139" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2006.0139</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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Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; Risk Assessment; Fluid Therapy; Informed Consent; International Cooperation; Parenteral Nutrition; Practice Guidelines; Neoplasms; Palliative Care/standards; Pain/drug therapy; Attitude to Death/ethnology; Terminal Care/standards; Hypnotics and Sedatives/administration & dosage/classification/therapeutic use
Creator
An entity primarily responsible for making the resource
de Graeff A; Dean M
Description
An account of the resource
PURPOSE: Palliative sedation therapy (PST) is a controversial issue. There is a need for internationally accepted definitions and standards. METHODS: A systematic review of the literature was performed by an international panel of 29 palliative care experts. Draft papers were written on various topics concerning PST. This paper is a summary of the individual papers, written after two meetings and extensive e-mail discussions. RESULTS: PST is defined as the use of specific sedative medications to relieve intolerable suffering from refractory symptoms by a reduction in patient consciousness, using appropriate drugs carefully titrated to the cessation of symptoms. The initial dose of sedatives should usually be small enough to maintain the patients' ability to communicate periodically. The team looking after the patient should have enough expertise and experience to judge the symptom as refractory. Advice from palliative care specialists is strongly recommended before initiating PST. In the case of continuous and deep PST, the disease should be irreversible and advanced, with death expected within hours to days. Midazolam should be considered first-line choice. The decision whether or not to withhold or withdraw hydration should be discussed separately. Hydration should be offered only if it is considered likely that the benefit will outweigh the harm. PST is distinct from euthanasia because (1) it has the intent to provide symptom relief, (2) it is a proportionate intervention, and (3) the death of the patient is not a criterion for success. PST and its outcome should be carefully monitored and documented. CONCLUSION: When other treatments fail to relieve suffering in the imminently dying patient, PST is a valid palliative care option.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2006.0139" target="_blank" rel="noreferrer">10.1089/jpm.2006.0139</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
2007
Attitude To Death/ethnology
Backlog
de Graeff A
Dean M
Fluid Therapy
Humans
Hypnotics and Sedatives/administration & dosage/classification/therapeutic use
Informed Consent
International Cooperation
Journal Article
Journal of Palliative Medicine
Neoplasms
Pain/drug Therapy
Palliative Care/standards
Parenteral Nutrition
Practice Guidelines
Risk Assessment
Terminal Care/standards
-
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/CCM.0b013e3181cbaff4" target="_blank" rel="noreferrer">http://doi.org/10.1097/CCM.0b013e3181cbaff4</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
Clinical research ethics for critically ill patients: a pandemic proposal
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Critical Illness; Research; Informed Consent; Disease Outbreaks; Ethics; Ethics Committees; Human; H1N1 Subtype; Influenza; Influenza A Virus
Creator
An entity primarily responsible for making the resource
Cook D; Burns K; Finfer S; Kissoon N; Bhagwanjee S; Annane D; Sprung CL; Fowler R; Latronico N; Marshall J
Description
An account of the resource
Pandemic H1N1 influenza is projected to be unprecedented in its scope, causing acute critical illness among thousands of young otherwise healthy adults, who will need advanced life support. Rigorous, relevant, timely, and ethical clinical and health services research is crucial to improve their care and outcomes. Studies designed and conducted during a pandemic should be held to the same high methodologic and implementation standards as during other times. However, unique challenges arise with the need to conduct investigations as efficiently as possible, focused on the optimal outcome for the individual patient, while balancing the need for maximal societal benefit. We believe that clinical critical care research during a pandemic must be approached differently from research undertaken under nonemergent circumstances. We propose recommendations to clinical investigators and research ethics committees regarding clinical and health services research on pandemic-related critical illness. We also propose strategies such as expedited and centralized research ethics committee reviews and alternate consent models.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/CCM.0b013e3181cbaff4" target="_blank" rel="noreferrer">10.1097/CCM.0b013e3181cbaff4</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
2010
Annane D
Backlog
Bhagwanjee S
Burns K
Cook D
Critical Care Medicine
Critical Illness
Disease Outbreaks
Ethics
Ethics Committees
Finfer S
Fowler R
H1N1 Subtype
Human
Humans
Influenza
Influenza A Virus
Informed Consent
Journal Article
Kissoon N
Latronico N
Marshall J
Research
Sprung CL
-
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/10.1186/1471-2288-8-15" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2288-8-15</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
The impact of consent on observational research: a comparison of outcomes from consenters and non consenters to an observational study
Publisher
An entity responsible for making the resource available
Bmc Medical Research Methodology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Female; Humans; Questionnaires; Socioeconomic Factors; Medical Records; Informed Consent; Neoplasm Staging; Observation/methods; Breast Neoplasms/pathology/therapy
Creator
An entity primarily responsible for making the resource
Macleod U; Watt GC
Description
An account of the resource
BACKGROUND: Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an assessment of the probabilities of public benefit and individual harm. METHODS: In the late 1990s, we carried out an observational study which compared the care given to affluent and deprived women with breast cancer. Patient consent was not required at that time for review of medical records, but was obtained later in the process prior to participation in the questionnaire study. We have re-analysed our original results to compare the whole sample with those who later provided consent. RESULTS: Two important findings emerged from the re-analysis of our data which if presented initially would have resulted in insufficient and inaccurate reporting. Firstly, the reduced dataset contains no information about women presenting with locally advanced or metastatic cancer and we would have been unable to demonstrate one of our initial key findings: namely a larger number of such women in the deprived group. Secondly, our re-analysis of the consented women shows that significantly more women from deprived areas (51 v 31%, p = 0.018) received radiotherapy compared to women from more affluent areas. Previously published data from the entire sample demonstrated no difference in radiotherapy treatment between the affluent and deprived groups. CONCLUSION: The risk benefit assessment made regarding the use of medical records without consent should include the benefits of obtaining research evidence based on 100% of the population and the possibility of inappropriate or insufficient findings if research is confined to consented populations.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2288-8-15" target="_blank" rel="noreferrer">10.1186/1471-2288-8-15</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
2008
Backlog
Bmc Medical Research Methodology
Breast Neoplasms/pathology/therapy
Female
Humans
Informed Consent
Journal Article
Macleod U
Medical Records
Neoplasm Staging
Observation/methods
Questionnaires
Socioeconomic Factors
Watt GC
-
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/10.1016/j.spen.2004.03.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.spen.2004.03.012</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
Ethical issues in pediatric critical care neurology
Publisher
An entity responsible for making the resource available
Seminars In Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Humans; Pediatrics; Medical Futility; Research; Informed Consent; Ethics; Medical; Professional Patient Relationship; Death and Euthanasia; ICU Decision Making; Biomedical and Behavioral Research; Critical Care/ethics; Health Care and Public Health; Intensive Care Units/ethics; Jurisprudence; Neurology/ethics
Creator
An entity primarily responsible for making the resource
Shevell M
Description
An account of the resource
Ethical issues in the critical care unit frequently arise in children with neurological problems. These ethical issues frequently challenge our medical management of such cases and can be quite problematic. This article reviews key ethical issues that may arise including informed consent, futility, justice/rationing, clinical research conduct and the severely compromised patient who is in either a permanent vegetative or minimally conscious state.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.spen.2004.03.012" target="_blank" rel="noreferrer">10.1016/j.spen.2004.03.012</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
Backlog
Biomedical and Behavioral Research
Child
Critical Care/ethics
Death and Euthanasia
Ethics
Health Care and Public Health
Humans
ICU Decision Making
Informed Consent
Intensive Care Units/ethics
Journal Article
Jurisprudence
Medical
Medical Futility
Neurology/ethics
Pediatrics
Professional Patient Relationship
Research
Seminars In Pediatric Neurology
Shevell M
-
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
A name given to the resource
Research ethics committees and paternalism
Publisher
An entity responsible for making the resource available
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
An entity primarily responsible for making the resource
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
Backlog
URL Address
<a href="http://doi.org/10.1016/0895-4356(89)90085-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/0895-4356(89)90085-1</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
Effects of framing and level of probability on patients' preferences for cancer chemotherapy
Publisher
An entity responsible for making the resource available
Journal Of Clinical Epidemiology
Date
A point or period of time associated with an event in the lifecycle of the resource
1989
Subject
The topic of the resource
Female; Humans; Male; Adult; Attitude to Health; Prognosis; Aged; Middle Aged; Patient Participation; Health Status; Probability; Informed Consent; adolescent; Non-U.S. Gov't; Research Support; Neoplasms/drug therapy/mortality/psychology; Random Allocation
Creator
An entity primarily responsible for making the resource
O'Connor AM
Description
An account of the resource
Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose of this study was to examine the influence of level and framing of probability on preferences for cancer treatment alternatives in which tradeoffs between quantity and quality of life are made. 129 healthy volunteers and 154 cancer patients indicated their preferences for a toxic treatment over a non-toxic treatment at varying survival probabilities. Subjects responded to questions in one of three randomly assigned conditions: (1) a positive frame in which the probability of survival was given; (2) a negative frame in which the probability of dying was given; and (3) a mixed frame in which the probability of surviving and dying were both given. The cancer patients' preferences for the more effective toxic treatment was significantly stronger than the healthy volunteers. Both groups were significantly influenced by the level of probability that was presented. Preferences for the toxic treatment were weaker when the chance of survival dropped below 50%. This weakening preference below 50% survival was enhanced for subjects who responded in the negative frame. A negative frame or probability level below 0.5 would seem to stimulate a "dying mode" type of value system in which quality of life becomes more salient in decision making than quantity of life. The implications in eliciting informed consent from patients are discussed.
1989
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/0895-4356(89)90085-1" target="_blank" rel="noreferrer">10.1016/0895-4356(89)90085-1</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
1989
Adolescent
Adult
Aged
Attitude To Health
Backlog
Female
Health Status
Humans
Informed Consent
Journal Article
Journal Of Clinical Epidemiology
Male
Middle Aged
Neoplasms/drug therapy/mortality/psychology
Non-U.S. Gov't
O'Connor AM
Patient Participation
Probability
Prognosis
Random Allocation
Research Support
-
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.12.2.72" target="_blank" rel="noreferrer">http://doi.org/10.1136/jme.12.2.72</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
Informed dissent: the views of some mothers of severely mentally handicapped young adults
Publisher
An entity responsible for making the resource available
Journal Of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
1986
Subject
The topic of the resource
Female; Humans; infant; Adult; Middle Aged; Euthanasia; Disabled Persons; Informed Consent; Patient Compliance; Empirical Approach; Mental Health Therapies; Death and Euthanasia; Mothers/psychology; Newborn; Genetics and Reproduction; Passive; Value of Life; Abortion; Congenital Abnormalities/therapy; Induced
Creator
An entity primarily responsible for making the resource
Simms M
Description
An account of the resource
Much of the discussion since the Arthur case has centred round the rights of handicapped infants to medical treatment. Little has centred round the question of how far one person can rightly be required to sacrifice her life for another, when she has not been consulted beforehand. This may be due to the fact that most of the discussants are men, while nearly all the carers are women. This small study attempts to redress this balance by asking mothers who have cared for 20 years, whether they felt it was worthwhile.; KIE: As part of a larger study by a British regional health authority, 15 mothers of severely mentally handicapped young adults from varying socioeconomic areas were asked for their views on selective abortion and treatment of severely handicapped newborns. Ten of the 15 women wished with hindsight that they could have had an abortion, and 12 thought such infants should be allowed to die. Simms concludes that the views of those who have cared devotedly for their severely mentally handicapped children deserve more consideration. Davis, herself disabled and an activist for the handicapped, asserts that human rights devolve to every individual at fertilization and cannot be apportioned according to perceived "worth." She suggests that parents who are unable to cope with a handicapped child should consider offering the baby for adoption as an alternative to "killing" the child.
1986
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/jme.12.2.72" target="_blank" rel="noreferrer">10.1136/jme.12.2.72</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
1986
Abortion
Adult
Backlog
Congenital Abnormalities/therapy
Death and Euthanasia
Disabled Persons
Empirical Approach
Euthanasia
Female
Genetics and Reproduction
Humans
Induced
Infant
Informed Consent
Journal Article
Journal of Medical Ethics
Mental Health Therapies
Middle Aged
Mothers/psychology
Newborn
Passive
Patient Compliance
Simms M
Value of Life
-
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/10.1016/s0140-6736(99)90253-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0140-6736(99)90253-2</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
Research in children: ethical and scientific aspects
Publisher
An entity responsible for making the resource available
Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Child; infant; Parental Consent; Risk Assessment; Research; Informed Consent; Risk; Medical; Newborn; Ethics Committees; Human; Developing Countries; Pediatrics; Clinical Trials/st [Standards]; Ethics; Research/st [Standards]; Nontherapeutic Human Experimentation
Creator
An entity primarily responsible for making the resource
Smyth RL; Weindling AM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0140-6736(99)90253-2" target="_blank" rel="noreferrer">10.1016/s0140-6736(99)90253-2</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
Description
An account of the resource
1999
1999
Backlog
Child
Clinical Trials/st [Standards]
Developing Countries
Ethics
Ethics Committees
Human
Infant
Informed Consent
Journal Article
Lancet
Medical
Newborn
Nontherapeutic Human Experimentation
Parental Consent
Pediatrics
Research
Research/st [Standards]
Risk
Risk Assessment
Smyth RL
Weindling AM
-
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/10.1016/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0738-3991(98)00125-6</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
The attitude of young adults with chronic disease or handicaps towards enforced treatment and euthanasia
Publisher
An entity responsible for making the resource available
Patient Education And Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Female; Humans; Male; Adolescent Psychology; Attitude to Health; Medical Futility; Prognosis; Questionnaires; Attitude to Death; Physician's Role; Informed Consent; Israel; Case-Control Studies; quality of life; adolescent; decision making; Family/psychology; Treatment Refusal/psychology; Chronic Disease/psychology; Disabled Persons/psychology; Euthanasia/psychology; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Brook U
Description
An account of the resource
One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison group included 120 healthy high school pupils of the same age group. A total of 42.6% of the chronic patients thought that enforced treatment was justified even if the patient didn't understand its importance and didn't want treatment (in comparison with 23.3% of the healthy pupils who felt the same way). Of the chronic patients, 54.4% thought that euthanasia was justified in consenting terminal patients (in comparison with 74.2% of the healthy pupils who felt the same way; P < 0.01). This may be explained by the feeling of total dependency of chronic patients upon medication and treatment. On the other hand, they may be opposed to euthanasia because of their own personal hope that a cure would be found for their severe and chronic condition. Both groups studied believed that physicians should always consider the subjective suffering of the patient and his family, as well as the short and long term prognosis when deciding about therapy.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">10.1016/s0738-3991(98)00125-6</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
1999
Adolescent
Adolescent Psychology
Attitude To Death
Attitude To Health
Backlog
Brook U
Case-Control Studies
Chronic Disease/psychology
Decision Making
Disabled Persons/psychology
Euthanasia/psychology
Family/psychology
Female
Humans
Informed Consent
Israel
Journal Article
Male
Medical Futility
Patient Education and Counseling
Physician's Role
Prognosis
Quality Of Life
Questionnaires
Terminal Care/psychology
Treatment Refusal/psychology
-
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/10.1097/00003246-200102000-00002" target="_blank" rel="noreferrer">http://doi.org/10.1097/00003246-200102000-00002</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
Variability among institutional review boards' decisions within the context of a multicenter trial
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Humans; United States; decision making; Questionnaires; Respiration; Informed Consent; Organizational Policy; Empirical Approach; Biomedical and Behavioral Research; Multi-site Ethics; Educational Status; Respiratory Distress Syndrome; Organizational; Randomized Controlled Trials as Topic/standards; Research/standards; Professional Staff Committees/organization & administration; National Institutes of Health (U.S.); Artificial/methods; Adult/therapy; Clinical Protocols/standards; Multicenter Studies as Topic/standards; Tidal Volume
Creator
An entity primarily responsible for making the resource
Silverman H; Hull SC; Sugarman J
Description
An account of the resource
BACKGROUND: Institutional review boards (IRBs) are given discretion to interpret and apply the federal regulations governing the protection of human subjects in research. OBJECTIVE: To determine the extent of the variability among different IRBs on their approved research practices and informed consent forms within the context of a multicenter trial that used a common protocol. DESIGN: Descriptive analysis of survey information and informed consent forms. SETTING AND PARTICIPANTS: Sixteen IRBs from the institutions participating in a multicenter trial comparing lower vs. traditional tidal volume ventilation in patients with acute lung injury. MEASUREMENTS: Analysis of survey information on IRBs' approved research practices. Analysis of informed consent forms for the presence and the adequacy of description of each basic element of informed consent specified in the federal regulations. Reading levels of informed consent forms. MAIN RESULTS: Surveys and IRB-approved consent forms were obtained from all of the contacted IRBs (n = 16). Variability was observed among several of the research practices; one IRB waived the requirement for informed consent, five IRBs permitted telephone consent, and three IRBs allowed prisoners to be enrolled. Three consent forms contained all of the basic elements of informed consent outlined in the federal regulations, and 13 forms had varying numbers of these elements absent (six forms without one element, four without two, one without three, and two without four). Reading levels of the consent forms ranged from grades 8.2 to 13.4 (mean +/- sd was 11.6 +/- 1.2 grade level). CONCLUSIONS: Within a multicenter trial, IRBs reviewing a common protocol varied in several of their approved research practices and in the extent to which the basic elements of informed consent were included in their consent forms.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00003246-200102000-00002" target="_blank" rel="noreferrer">10.1097/00003246-200102000-00002</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
2001
Adult/therapy
Artificial/methods
Backlog
Biomedical and Behavioral Research
Clinical Protocols/standards
Critical Care Medicine
Decision Making
Educational Status
Empirical Approach
Hull SC
Humans
Informed Consent
Journal Article
Multi-site Ethics
Multicenter Studies as Topic/standards
National Institutes of Health (U.S.)
Organizational
Organizational Policy
Professional Staff Committees/organization & administration
Questionnaires
Randomized Controlled Trials as Topic/standards
Research/standards
Respiration
Respiratory Distress Syndrome
Silverman H
Sugarman J
Tidal Volume
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/10.1177/0272989x9501500208" target="_blank" rel="noreferrer">http://doi.org/10.1177/0272989x9501500208</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
Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment?
Publisher
An entity responsible for making the resource available
Medical Decision Making
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Treatment Outcome; Patient Acceptance of Health Care; Informed Consent; Non-U.S. Gov't; Research Support; decision making; Statistical; Data Interpretation; Primary Prevention; Patient Education; Antilipemic Agents/therapeutic use; Hyperlipidemia/complications/drug therapy/psychology
Creator
An entity primarily responsible for making the resource
Hux JE; Naylor CD
Description
An account of the resource
Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same data affected the willingness of 100 outpatients to take what were implied to be three different lipid-lowering drugs. Side-effects were declared negligible and costs insured. Subjects make a "yes-no" decision about taking such a medication, and graded the decision on a certainty scale. Advised of a relative risk reduction--"34% reduction in heart attacks"--88% of the patients assented to therapy. All other formats elicited significantly more refusals (p < 0.0001): for absolute risk difference--"1.4% fewer patients had heart attacks"--42% assented; for inverted absolute risk--"treat 71 persons for 5 years to prevent one heart attack"--only 31% accepted treatment. When the data were extrapolated to disease-free survival--"average gain of 15 weeks"--40% consented. Similar responses were obtained for descriptions of an antihypertensive drug: 89% assented to therapy when given relative risk reduction but only 46% when given absolute risk reduction. The subjects were confident in both acceptance and refusal: 93% of the decisions were rated "somewhat certain" to "completely certain." The authors conclude that patients' views of medical therapy are shaped by the formats in which potential benefits are presented. Multiple complementary formats may be most appropriate. The results imply that many patients may decline treatment if briefed on the likelihood or extent of benefit.
1995
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0272989x9501500208" target="_blank" rel="noreferrer">10.1177/0272989x9501500208</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
1995
Adult
Aged
Antilipemic Agents/therapeutic use
Backlog
Data Interpretation
Decision Making
Female
Humans
Hux JE
Hyperlipidemia/complications/drug therapy/psychology
Informed Consent
Journal Article
Male
Medical Decision Making
Middle Aged
Naylor CD
Non-U.S. Gov't
Patient Acceptance of Health Care
Patient Education
Primary Prevention
Questionnaires
Research Support
statistical
Treatment Outcome
-
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
February 2018 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
February 2018 List
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer">http://doi.org/</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
Children's Nurses' experiences in delivering bereavement care to children and families with life limiting conditions in the Irish context
Publisher
An entity responsible for making the resource available
Bmc Pregnancy And Childbirth
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bereavement support; nurse; bereavement; Child; genetic transcription; hospice care; Human; Informed Consent; Ireland; Only Child; Palliative therapy; research ethics; semi structured interview; Terminal Care
Creator
An entity primarily responsible for making the resource
Power S; Kelly-Horrigan M
Description
An account of the resource
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and frequently caring for the child and family. This relationship is essential within the delivery of bereavement care. However, there is a dearth of information on nurses' emic perspective and experiences within this area. The aim of this study was to gain a deeper understanding of the experiences of children's nurses' (RCN) in delivering bereavement care to children and their families with life limiting conditions, and what meaning they ascribe to their experience. In addition, the aim was to explore what impact provision of bereavement care had on RCN's as service providers, and what their needs were in the provision of effective, supportive, quality driven bereavement care to this population. Using a phenomenological design guided by Heideggerian approach underpinned by Ricoeur's analytical framework, seven semistructured interviews were conducted with RCN's with experience of delivering children's palliative care and bereavement care in Ireland. Interviews were taped and transcribed verbatim. Three themes were identified; 'being communicative and collaborative', 'being challenged' and 'being familiar'. These themes encompassed nurses' experiences with both families and healthcare professionals, highlighting the benefits for RCN involvement in the delivery of bereavement care to promote overall best outcomes. The findings support the role of RCN's in the delivery of bereavement care to children and families with life limiting conditions. It highlights the need for RCN's to be educated, up-skilled, supported, and included within the interdisciplinary team to deliver bereavement care. Ethical approval for the study was granted by LauraLynn Research Ethics Committee (2016). Written informed consent was obtained by all study participants.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer"></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).
2017
Bereavement
Bereavement Support
Bmc Pregnancy And Childbirth
Child
February 2018 List
genetic transcription
Hospice Care
Human
Informed Consent
Ireland
Kelly-Horrigan M
Nurse
Only Child
Palliative Therapy
Power S
research ethics
Semi Structured Interview
Terminal Care
-
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
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905</a>
Notes
<p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171905. Date of Publication: September 2017</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
A name given to the resource
Guidance on forgoing life-sustaining medical treatment
Publisher
An entity responsible for making the resource available
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
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Creator
An entity primarily responsible for making the resource
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Description
An account of the resource
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Identifier
An unambiguous reference to the resource within a given context
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</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).
2017
Apparent Life Threatening Event/th [therapy]
Article
Awareness
Boss RD
Caregiver
Carter BS
Child Abuse
Child Care
Christian CW
Clinical Decision Making
Comatose Patient
Consensus
Consultation
Critical Illness/th [therapy]
Davies D
Death
Death By Neurologic Criteria
Dell ML
Developmental Disorder/th [therapy]
Diekema DS
Disease Burden
Disease Course
Elster N
Ethical Decision Making
Extremely Low Gestational Age
Family Decision Making
Family Stress
Feudtner C
Flaherty EG
Fortson BL
Foster Care
Gavril AR
Gestational Age
Goal Attainment
Guinn-Jones M
Hauer JM
Health Belief
High Risk Population
Human
Humphrey LM
Hurley TP
Hydration
Idzerda SM
Imaizumi S
Imminent Death
Informed Consent
Intensive Care
Interpersonal Communication
Katz AL
Klick J
Klipstein S
Laskey A
Laventhal N
Legal Aspect
Legano LA
Leventhal JM
Life-sustaining Medical Treatment
Linebarger JS
Lord B
MacAuley RC
MacMillan H
Medical Ethics
Medical Expert
Medical Information
Medical Procedures
Medical Specialist
Medically Administered Nutrition And Hydration
Moon MR
Neglect
Neurologic Disease/di [diagnosis]
November 2017 List
Nutrition
Okun AL
Opel DJ
Oxygenation
Pain/th [therapy]
Palliative Therapy
Parker S
Patient Care Planning
Pediatrician
Pediatrics
Practice Guideline
Priority Journal
Prognosis
Quality Of Life
Resuscitation
Rivera F
shared decision making
Social Support
Spiritual Care
Statter MB
Stedt E
Survival
Teamwork
Terminal Care
Tissue Perfusion
Uncertain Prognosis
Weise KL