1
40
13
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Title
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March 2021 List
Text
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March 2021 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000002189" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000002189</a>
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Title
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Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Humans; Surveys and Questionnaires; Infant Newborn; Canada; Cross-Sectional Studies; Morals; Intensive Care Units Neonatal; Stress Psychological/diagnosis/epidemiology
Creator
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Dryden-Palmer K; Moore G; McNeil C; Larson CP; Tomlinson G; Roumeliotis N; Janvier A; Parshuram CS
Description
An account of the resource
OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral Distress Scale-Revised and by self-rating. Depersonalization was assessed on the subscale of the Maslach Burnout Inventory. Respondents reported their attendance at each of six hospital supports that may serve to mitigate moral distress in frontline staff. Analyses compared outcomes across respondent characteristics and hierarchical linear regression evaluated individual, ICU, hospital, and regional effects. SETTING: Eligible ICUs were PICUs and level-3 neonatal ICUs in Canada. SUBJECTS: Eligible participants had worked in the participating ICU for more than 3 months. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We identified 54 eligible ICUs from 31 hospitals. Forty-nine Canadian neonatal ICUs and PICUs (91%) contributed 2,852 complete responses for a 45.2% response rate. Most respondents were nurses (64.9%) or from a neonatal ICU (66.5%). The median and interquartile range Moral Distress Scale-Revised were 79 (52-113); 997 respondents (34.2%) had Moral Distress Scale-Revised scores greater than or equal to 100, and 234 respondents (8.3%) strongly agreed that work caused them significant moral distress. Nurses had a median (interquartile range) Moral Distress Scale-Revised score of 85 (57-121), 19 points higher than physicians and 8 points higher than respiratory therapists (p < 0.0001). Moral Distress Scale-Revised scores increased from 53 (35-79) for those working in ICU less than 1 year to 83 (54-120) in those working in ICU more than 30 years (p < 0.0001); 22.5% reported high degrees of depersonalization, which was associated with moral distress (p < 0.0001). Variability in Moral Distress Scale-Revised scores was explained by individual-level (92%), hospital-level (5%), and ICU-level effects (1%). Frequency of participation in potentially mitigating hospital supports had small effects (< 10 points) on mean Moral Distress Scale-Revised scores. CONCLUSIONS: Moral distress is common in clinicians working in ICUs for children. Addressing moral distress will require interventions tailored to individuals in higher-risk groups.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000002189" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002189</a>
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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
Canada
Child
Cross-sectional Studies
Dryden-Palmer K
Humans
Infant Newborn
Intensive Care Units Neonatal
Janvier A
Larson CP
March 2021 List
McNeil C
Moore G
Morals
Parshuram CS
Pediatric Critical Care Medicine
Roumeliotis N
Stress Psychological/diagnosis/epidemiology
Surveys And Questionnaires
Tomlinson G
-
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/10.1177/1367493506060209" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493506060209</a>
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Title
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The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France
Publisher
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Journal Of Child Health Care
Date
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2006
Subject
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Child; Humans; Intensive Care Units; Grief; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Clinical Competence; Qualitative Research; Morals; Hospitals; Nursing Methodology Research; Pediatric; Adaptation; Psychological; decision making; infant; Parents/education/psychology; ICU Decision Making; social support; Physician's Role/psychology; Hospitalized/psychology; Intensive Care/psychology; Guilt; Life Support Care/psychology; Attitude to Health/ethnology; Parental Consent/psychology; Paris
Creator
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Carnevale FA; Canoui P; Hubert P; Farrell C; Leclerc F; Doussau A; Seguin MJ; Lacroix J
Description
An account of the resource
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information
(2) physicians should be responsible for life-support decisions
Identifier
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<a href="http://doi.org/10.1177/1367493506060209" target="_blank" rel="noreferrer">10.1177/1367493506060209</a>
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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).
Type
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Journal Article
2006
Adaptation
Attitude to Health/ethnology
Backlog
Canoui P
Carnevale FA
Child
Clinical Competence
Communication
Decision Making
Doussau A
Farrell C
Grief
Guilt
Health Services Needs And Demand
Hospitalized/psychology
Hospitals
Hubert P
Humans
ICU Decision Making
Infant
Intensive Care Units
Intensive Care/psychology
Journal Article
Journal Of Child Health Care
Lacroix J
Leclerc F
Life Support Care/psychology
Morals
Nursing Methodology Research
Parental Consent/psychology
Parents/education/psychology
Paris
Pediatric
Physician's Role/psychology
Professional-family Relations
Psychological
Qualitative Research
Questionnaires
Seguin MJ
Social Support
-
Dublin Core
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Title
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September 2018 List
Text
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Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1007/s11019-017-9754-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11019-017-9754-5</a>
Dublin Core
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Title
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Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Publisher
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Medicine, Health Care & Philosophy
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Health Personnel/es [Ethics]; Health Personnel/px [Psychology]; Intensive Care Units; Parents/px [Psychology]; Withholding Treatment/es [Ethics]; Decision Making/es [Ethics]; France; Humans; Infant; Interviews as Topic; Morals; Neonatal/es [Ethics]; Newborn
Creator
An entity primarily responsible for making the resource
Fournier V; Belghiti E; Brunet L; Spranzi M
Description
An account of the resource
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby's appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant's death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices-that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby's death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby's comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby's death.
Identifier
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<a href="http://doi.org/10.1007/s11019-017-9754-5" target="_blank" rel="noreferrer noopener">10.1007/s11019-017-9754-5</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
2017
Belghiti E
Brunet L
Decision Making/es [Ethics]
Fournier V
France
Health Personnel/es [Ethics]
Health Personnel/px [psychology]
Humans
Infant
Intensive Care Units
Interviews As Topic
Medicine, Health Care & Philosophy
Morals
Neonatal/es [Ethics]
Newborn
October 2018 List
Parents/px [psychology]
September 2018 List
Spranzi M
Withholding Treatment/es [ethics]
-
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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March 2023 List
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).
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
March List 2023
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
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Title
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Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria
Publisher
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Journal of Clinical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative Care; Quality of Life; Child; Healthcare Disparities; Human; Morals; Palliative Care; Referral and Consultation
Creator
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Gouda SR; Hoehn KS
Description
An account of the resource
Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, fraught with healthcare providers' biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers' biases and disparities that exist within pediatric palliative care.<ovid:br/><ovid:br/> Copyright 2022 The Journal of Clinical Ethics. All rights reserved.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
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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).
2022
Child
Gouda SR
Healthcare Disparities
Hoehn KS
Human
March List 2023
Morals
Palliative Care
Quality Of Life
Referral And Consultation
The Journal Of Clinical Ethics
-
Text
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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>
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Title
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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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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
-
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.semperi.2021.151525" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.semperi.2021.151525</a>
Dublin Core
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Title
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Moral equivalence theory in neonatology
Publisher
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Seminars in Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Humans; Decision Making; Infant, Newborn; Withholding Treatment; Morals; Neonatology
Creator
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Lin M; Vitcov GG; Cummings CL
Description
An account of the resource
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rationale behind ET, and provide an analysis of how ET relates to literature that describes neonatal mode of death and healthcare professional and parent attitudes towards end-of-life care. While ET may serve as an ethical tool to optimize resource allocation in theory, its clinical utility is limited given the complexity of end-of-life care decisions.
Identifier
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<a href="http://doi.org/10.1016/j.semperi.2021.151525" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151525</a>
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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).
2022
August 2022 List
Cummings CL
Decision Making
Humans
Infant, Newborn
Lin M
Morals
Neonatology
Seminars in Perinatology
Vitcov GG
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
April 2016 List
Dublin Core
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Title
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Ethical Issues In Neonatal Intensive Care Units.
Publisher
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Journal Of Maternal, Fetal And Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Attitude Of Health Personnel; Child; Europe; Euthanasia Passive/ethics; Humans; Infant Newborn; Intensive Care Neonatal/ethics; Italy; Morals; Parents; Withholding Treatment/ethics
Creator
An entity primarily responsible for making the resource
Liu J; Chen X; Wang XL
Description
An account of the resource
Recent progress in neonatal care have significantly improved the prognosis and chances of survival of critically ill or extremely preterm neonates and have modified the limits of viability. However, in some circumstances, when the child's death can only be briefly postponed at the price of severe suffering, or when survival is associated with severe disabilities and an intolerable life for the child and his/her parents, the application of the full armamentarium of modern neonatal intensive care may not be appropriate. In such circumstances the limitation of intensive treatments (withholding or withdrawing) and shift towards palliative care, can represent a more humane and reasonable alternative. This article examines and discusses the ethical principles underlying such difficult decisions, the most frequent situations in which these decisions may be considered, the role of parents in the decisional process, and the opinions and behaviours of neonatologists of several European neonatal intensive units as reported by the EURONIC study.
Identifier
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DOI: 10.4415/ANN_11_03_06
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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).
2016
Adult
April 2016 List
Attitude Of Health Personnel
Chen X
Child
Europe
Euthanasia Passive/ethics
Humans
Infant Newborn
Intensive Care Neonatal/ethics
Italy
Journal of Maternal, Fetal and Neonatal Medicine
Liu J
Morals
Parents
Wang XL
Withholding Treatment/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/10.1016/s0022-3476(88)80262-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0022-3476(88)80262-2</a>
Dublin Core
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Title
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Withholding nutrition from seriously ill newborn infants: a parent's perspective
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
1988
Subject
The topic of the resource
Humans; infant; Male; Adult; Parents; Withholding Treatment; Euthanasia; Age Factors; Patient Selection; Morals; Enteral Nutrition; Death and Euthanasia; Newborn; Euthanasia; Brain Diseases; Diseases; Jurisprudence; Passive
Creator
An entity primarily responsible for making the resource
Miraie ED
Identifier
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<a href="http://doi.org/10.1016/s0022-3476(88)80262-2" target="_blank" rel="noreferrer">10.1016/s0022-3476(88)80262-2</a>
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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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
1988
1988
Adult
Age Factors
Backlog
Brain Diseases
Death and Euthanasia
Diseases
Enteral Nutrition
Euthanasia
Humans
Infant
Journal Article
Jurisprudence
Male
Miraie ED
Morals
Newborn
Parents
Passive
Patient Selection
The Journal Of Pediatrics
Withholding Treatment
-
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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April 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
April 2019 List
URL Address
<a href="http://doi.org/10.1007/s11673-018-9847-8" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1007/s11673-018-9847-8</a>
Dublin Core
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Title
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Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
Publisher
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Journal of bioethical inquiry
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Neonatology; Humans; Burnout Professional; Attitude of Health Personnel; Patient Participation; Morals; Stress Psychological; Decision-making; Decision Making/ethics; Clinical ethics; End-of-life issues; Patient Care/ethics; Physicians/ethics/psychology; Professional-professional relationship
Creator
An entity primarily responsible for making the resource
Prentice TM; Gillam L
Description
An account of the resource
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be "constrained" in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11673-018-9847-8" target="_blank" rel="noreferrer noopener">10.1007/s11673-018-9847-8</a>
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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).
2018
April 2017 List
Attitude Of Health Personnel
Burnout Professional
Clinical Ethics
Decision Making/ethics
Decision-making
End-Of-Life Issues
Gillam L
Humans
Journal of bioethical inquiry
Morals
Neonatology
Patient Care/ethics
Patient Participation
Physicians/ethics/psychology
Prentice TM
Professional-professional relationship
Stress Psychological
-
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
September 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
October 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-313539</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
Always a burden? Healthcare providers' perspectives on moral distress
Publisher
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Archives of Disease in Childhood Fetal & Neonatal Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Humans; Intensive Care Units; Stress; Attitude of Health Personnel; Female; Male; Adult; Qualitative Research; Intensive Care; Terminal Care/es [Ethics]; Terminal Care/px [Psychology]; Morals; Job Satisfaction; Psychological; Neonatal; Burnout; Terminal Care; Health Personnel/px [Psychology]; Professional/px [Psychology]; Neonatal/sn [Statistics & Numerical Data]; Neonatal/es [Ethics]; Burnout; Intensive Care; Stress; Neonatal/px [Psychology]; Professional; Professional/et [Etiology]; Professional/pc [Prevention & Control]; Psychological/et [Etiology]; Psychological/pc [Prevention & Control]
Creator
An entity primarily responsible for making the resource
Prentice TM; Gillam L; Davis PG; Janvier A
Description
An account of the resource
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. DESIGN: An anonymous questionnaire was distributed to medical and nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical and one perinatal-seeking their understanding of the term and their experience of it. Open-ended questions were analysed using qualitative methodology. RESULTS: A total of 345 healthcare providers from two NICUs participated (80% response rate): 286 nurses and 59 medical providers. Moral distress was correctly identified as constrained moral judgement resulting in distress by 93% of participants. However, in practice the term moral distress was also used as an umbrella term to articulate different forms of distress. Moral distress was experienced by 72% of providers at least once a month. Yet despite the negative sequelae of moral distress, few (8% medical, 21% nursing providers) thought that moral distress should be eliminated from the NICU. Open-ended responses revealed that while interventions were desired to decrease the negative impacts of moral distress, moral distress was also viewed as an essential component of the caring profession that prompts robust discussion and acts as an impetus for medical decision-making. CONCLUSIONS: Moral distress remains prevalent within NICUs. While the harmful aspects of moral distress need to be mitigated, moral distress may have a positive role in advocating for and promoting the interests of the neonatal population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313539</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.
2018
Adult
Archives of Disease in Childhood Fetal & Neonatal Edition
Attitude Of Health Personnel
Burnout
Davis PG
Female
Gillam L
Health Personnel/px [psychology]
Humans
Intensive Care
Intensive Care Units
Janvier A
Job Satisfaction
Male
Morals
Neonatal
Neonatal/es [Ethics]
Neonatal/px [Psychology]
Neonatal/sn [Statistics & Numerical Data]
October 2018 List
Prentice TM
Professional
Professional/et [Etiology]
Professional/pc [Prevention & Control]
Professional/px [Psychology]
Psychological
Psychological/et [etiology]
Psychological/pc [Prevention & Control]
Qualitative Research
September 2018 List
Stress
Terminal Care
Terminal Care/es [ethics]
Terminal Care/px [psychology]
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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/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">http://doi.org/10.7326/0003-4819-132-5-200003070-00012</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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Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.
Publisher
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Annals Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Humans; Male; United States; Consensus; Treatment Refusal; Aged; Intention; Fluid Therapy; Morals; Food; Suicide; Non-U.S. Gov't; Professional Patient Relationship; Research Support; patient care team; Death and Euthanasia; Psychological; Stress; Ethics; Assisted; Hypnotics and Sedatives/administration & dosage; Double Effect; Palliative Care/legislation & jurisprudence/methods
Creator
An entity primarily responsible for making the resource
Quill TE; Byock IR; Panel ACP-ASIMEnd-of-Life Care Consensus
Description
An account of the resource
When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">10.7326/0003-4819-132-5-200003070-00012</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
2000
Aged
Annals Of Internal Medicine
Assisted
Backlog
Byock IR
Consensus
Death and Euthanasia
Double Effect
Ethics
Fluid Therapy
Food
Humans
Hypnotics and Sedatives/administration & dosage
Intention
Journal Article
Male
Morals
Non-U.S. Gov't
Palliative Care/legislation & jurisprudence/methods
Panel ACP-ASIMEnd-of-Life Care Consensus
Patient Care Team
Professional Patient Relationship
Psychological
Quill TE
Research Support
Stress
Suicide
Treatment Refusal
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/10.1007/s11019-012-9444-2" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11019-012-9444-2</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
Continuous sedation until death: moral justifications of physicians and nurses--a content analysis of opinion pieces
Publisher
An entity responsible for making the resource available
Medicine, Health Care And Philosophy
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Humans; Palliative Care; Terminal Care; Deep Sedation; Physicians; Morals; Terminology as Topic; Ethics; Conscious Sedation; Nursing
Creator
An entity primarily responsible for making the resource
Rys S; Mortier F; Deliens L; Deschepper R; Battin MP; Bilsen J
Description
An account of the resource
Continuous sedation until death (CSD), the act of reducing or removing the consciousness of an incurably ill patient until death, often provokes medical-ethical discussions in the opinion sections of medical and nursing journals. A content analysis of opinion pieces in medical and nursing literature was conducted to examine how clinicians define and describe CSD, and how they justify this practice morally. Most publications were written by physicians and published in palliative or general medicine journals. Terminal Sedation and Palliative Sedation are the most frequently used terms to describe CSD. Seventeen definitions with varying content were identified. CSD was found to be morally justified in 73% of the publications using justifications such as Last Resort, Doctrine of Double Effect, Sanctity of Life, Autonomy, and Proportionality. The debate over CSD in the opinion sections of medical and nursing journals lacks uniform terms and definitions, and is profoundly marked by 'charged language', aiming at realizing agreement in attitude towards CSD. Not all of the moral justifications found are equally straightforward. To enable a more effective debate, the terms, definitions and justifications for CSD need to be further clarified.
2013-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11019-012-9444-2" target="_blank" rel="noreferrer">10.1007/s11019-012-9444-2</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
2013
Backlog
Battin MP
Bilsen J
Conscious Sedation
Deep Sedation
Deliens L
Deschepper R
Ethics
Humans
Journal Article
Medicine, Health Care And Philosophy
Morals
Mortier F
Nursing
Palliative Care
Physicians
Rys S
Terminal Care
Terminology as Topic
-
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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2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0288938</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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Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh
Publisher
An entity responsible for making the resource available
PLoS One
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Hospitals Pediatric; Palliative Care; Infant; Bangladesh; Palliative Care; Morals; Hospitals Pediatric; Anthropology Cultural
Creator
An entity primarily responsible for making the resource
Yantzi R; Hadiuzzaman M; Sen Gupta PK; Lamrous A; Richardson K; Pringle J; Schwartz L; Hossain P; Kizito D; Burza S
Description
An account of the resource
INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation. METHODS: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software. RESULTS: The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff's views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God's role in determining the child's outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied. CONCLUSION: When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family's needs and preferences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0288938</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).
2023
2023 SE5 - Low Resource Setting
Anthropology Cultural
Bangladesh
Burza S
Child
Hadiuzzaman M
Hospitals Pediatric
Hossain P
Humans
Infant
Kizito D
Lamrous A
Morals
Palliative Care
PLoS One
Pringle J
Richardson K
Schwartz L
Sen Gupta PK
Yantzi R