Certainty and mortality prediction in critically ill children.
Child; Humans; Intensive Care Units; Medical Staff; Hospital Mortality; Prognosis; Prospective Studies; Clinical Competence; Longitudinal Studies; Risk Assessment; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; Hospital; Health Care and Public Health; Critical Illness/mortality
OBJECTIVES: The objective of this study is to investigate the relationship between a physician's subjective mortality prediction and the level of confidence with which that mortality prediction is made. DESIGN AND PARTICIPANTS: The study is a prospective cohort of patients less than 18 years of age admitted to a tertiary Paediatric Intensive Care Unit (ICU) at a University Children's Hospital with a minimum length of ICU stay of 10 h. Paediatric ICU attending physicians and fellows provided mortality risk predictions and the level of confidence associated with these predictions on consecutive patients at the time of multidisciplinary rounds within 24 hours of admission to the paediatric ICU. Median confidence levels were compared across different ranges of mortality risk predictions. RESULTS: Data were collected on 642 of 713 eligible patients (36 deaths, 5.6%). Mortality predictions greater than 5% and less than 95% were made with significantly less confidence than those predictions 95%. Experience was associated with greater confidence in prognostication. CONCLUSIONS: We conclude that a physician's subjective mortality prediction may be dependent on the level of confidence in the prognosis; that is, a physician less confident in his or her prognosis is more likely to state an intermediate survival prediction. Measuring the level of confidence associated with mortality risk predictions (or any prognostic assessment) may therefore be important because different levels of confidence may translate into differences in a physician's therapeutic plans and their assessment of the patient's future.
2004
Marcin JP; Pretzlaff RK; Pollack MM; Patel KM; Ruttimann UE
Journal Of Medical Ethics
2004
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).
Journal Article
<a href="http://doi.org/10.1136/jme.2002.001537" target="_blank" rel="noreferrer">10.1136/jme.2002.001537</a>
Characteristics of deaths occurring in hospitalised children: changing trends
ICU Decision Making
BACKGROUND: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life‐limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. OBJECTIVES: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. METHODS: Routine administrative data from one large tertiary‐level UK children's hospital was examined over a 7‐year period (1997–2004) for children aged 0–18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases‐10 codes) were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test (non‐parametric variables), χ(2) test (proportions) and Cochran–Armitage test (linear trends). RESULTS: Of the 1127 deaths occurring in hospital over the 7‐year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in‐hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0–23.25 days) on a hospital ward before being admitted to an ICU where they died. CONCLUSIONS: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.
2007-05
Ramnarayan P; Craig F; Petros A; Pierce C
Journal Of Medical Ethics
2007
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).
Journal Article
<a href="http://doi.org/10.1136/jme.2005.015768" target="_blank" rel="noreferrer">10.1136/jme.2005.015768</a>
Considering medical assistance in dying for minors: the complexities of children's voices
children; death; euthanasia; law
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.
Singh H K; Macdonald M E; Carnevale F A
Journal of Medical Ethics
2020
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<a href="http://doi.org/10.1136/medethics-2019-105762" target="_blank" rel="noreferrer noopener">10.1136/medethics-2019-105762</a>
Coordinating the norms and values of medical research, medical practice and patient worlds-the ethics of evidence based medicine in orphaned fields of medicine
Delivery of Health Care; Humans; Personal Autonomy; Attitude to Health; Clinical Competence; Ethics; Medical; Analytical Approach; Models; Theoretical; Health Care and Public Health; Social Responsibility; Allied Health Occupations/ethics; Cognitive Therapy/ethics; Evidence-Based Medicine/ethics; Integrated/ethics; Interprofessional Relations/ethics; Logic; Patient Care Team/ethics; Physical Therapy Modalities/ethics; Social Justice/ethics
Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical professionals had better make sure their competency is state of the art medical science. What goes for the ethics of clinical trials goes for the ethics of medicine as a whole: anything that is scientifically doubtful is, other things being equal, ethically unacceptable. This particularly applies to so called orphaned fields of medicine, those areas where medical research is weak and diverse, where financial incentives are lacking, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital based medicine. Examples of such orphaned fields are physiotherapy, psychotherapy, medical psychology, and occupational health, which investigate complex syndromes such as RSI, whiplash, chronic low back pain, and chronic fatigue syndrome. It appears that the primary ethical problem in this context is the lack of attention to the orphaned fields. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that, in order to do justice to the interplay of heterogeneous factors that is so typical of the orphaned fields, other ethical models than justice are required. We propose the coordination model as a window through which to view the important ethical issues which relate to the communication and interaction of scientists, health care workers, and patients.
2004
Vos R; Willems D; Houtepen R
Journal Of Medical Ethics
2004
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).
Journal Article
<a href="http://doi.org/10.1136/jme.2003.007153" target="_blank" rel="noreferrer">10.1136/jme.2003.007153</a>
Cultural explanations and clinical ethics: active euthanasia in neonatology
Female; Humans; infant; Male; Euthanasia; Attitude; Islam; Congenital Abnormalities; Newborn; Active; Students; Hinduism
The authors have undertaken a study to explore the views in non-Western cultures about ending the lives of newborns with genetic defects. This study consists of including active euthanasia alongside withdrawal and withholding of treatment as potential methods used. Apart from radicalising the support for active euthanasia in certain instances of neonatal diagnoses, is another interesting point that views of children and death are shaped by religion and culture and are especially highly charged with culturally specific symbolism/s. Furthermore, this is augmented in the context of non-Western cultures—further polarising the positivist ethics of Western scientific medicine from the cultures that affect only those who are members of ‘other’ societies. From this starting point, the authors shift the focus from clinical explanations of the causation and prognosis of the genetic defects and enter a dialogue with cultural narratives. Consequently, their argument is, broadly, a reassessment of medical practice as a contextualisation of a particular culture/s rather than indifferent or independent from cultural forces or influences.
2014-03
Ahmad A
Journal Of Medical Ethics
2014
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Journal Article
<a href="http://doi.org/10.1136/medethics-2013-101328" target="_blank" rel="noreferrer">10.1136/medethics-2013-101328</a>
End-of-life decision making in Taiwan: healthcare practice is rooted in local culture and laws that should be adjusted to patients' best interests
Female; Humans; Male; Terminal Care; decision making; Attitude of Health Personnel; Medical Staff; Attitude to Death; Resuscitation Orders; Neonatology; Nursing Staff; Hospital
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.
2013-06
Tang Siew Tzuh
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2012-100760" target="_blank" rel="noreferrer">10.1136/medethics-2012-100760</a>
Ethical concerns regarding guidelines for the conduct of clinical research on children
Medical; PedPal Lit; Child Comparative StudyEthics; Research Great BritainGuidelines Helsinki Declaration Humans Informed Consent Pediatrics Societies
In this article we examine ethical aspects of the involvement of children in clinical research, specifically those who are incapable of giving informed consent to participate. The topic is, of course, not a new one in medical ethics but there are some tensions in current guidelines that, in our view, need to be made explicit and which need to be responded to by the relevant official bodies. In particular, we focus on tensions between the World Medical Association Declaration of Helsinki, and the guidance offered by the British Medical Association, the Royal College of Paediatrics and Child Health (formerly the British Paediatric Association), and the Council for International Organizations of Medical Sciences. We conclude with a call for these organisations to make their guidance explicit in relation to the World Medical Association Declaration.
2005
Edwards SD; McNamee MJ
Journal Of Medical Ethics
2005
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Journal Article
<a href="http://doi.org/10.1136/jme.2004.009555" target="_blank" rel="noreferrer">10.1136/jme.2004.009555</a>
In What Circumstances Will A Neonatologist Decide A Patient Is Not A Resuscitation Candidate?
Futility; Intensive Care; Social Issues; Social Sciences; Biomedical; Ethics Medical; Slow Code; Uncertainty; Neonatologists; Practice; Decision Making; Analysis; Do-not-resuscitate Orders; Decision Making; Intensive Care; Pediatrics; Ethics; Pulmonary Arteries; Ostomy; Palliative Care; Medical Prognosis
End-of-life Care; Foetal Viability; Neonatology; Newborns And Minors; Palliative Care
Objective The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit.
Study design An anonymous survey regarding the permissibility of unilateral DNAR orders for three clinical vignettes was sent to members of the American Academy of Pediatrics Section of Perinatal Medicine.
Results There were 490 out of a possible 3000 respondents (16%). A majority (76%) responded that a unilateral DNAR decision would be permissible in cases for which survival was felt to be impossible. A minority (25%) responded ‘yes’ when asked if a unilateral DNAR order would be permissible based solely on neurological prognosis.
Conclusions A majority of neonatologists believed unilateral DNAR decisions are ethically permissible if survival is felt to be impossible, but not permissible based solely on poor neurological prognosis. This has significant implications for clinical care.
Peter Daniel Murray; Denise Esserman; Mark Randolph Mercurio
Journal Of Medical Ethics
2016
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).
doi:10.1136/medethics-2015-102941
Informed dissent: the views of some mothers of severely mentally handicapped young adults
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
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
Simms M
Journal Of Medical Ethics
1986
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Journal Article
<a href="http://doi.org/10.1136/jme.12.2.72" target="_blank" rel="noreferrer">10.1136/jme.12.2.72</a>
Initiating technology dependence to sustain a child's life: a systematic review of reasons
children; decision-making; life sustaining treatment; Quality of life; Technology dependence; applied and professional ethics
BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions. METHODS: Medline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence. RESULTS: 53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care. CONCLUSIONS: There is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside 'end-of-life' care. This review provides a sound basis for empirical research into the important influences on a child's potential technology dependence.
Alexander D; Quirke MB; Berry J; Eustace-Cook J; Leroy P; Masterson K; Healy M; Brenner M
Journal of Medical Ethics
2021
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<a href="http://doi.org/10.1136/medethics-2020-107099" target="_blank" rel="noreferrer noopener">10.1136/medethics-2020-107099</a>
Medical Assistance in Dying at a paediatric hospital
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.
DeMichelis C; Zlotnik SR; Rapoport A
Journal of Medical Ethics
2018
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<a href="http://doi.org/10.1136/medethics-2018-104896" target="_blank" rel="noreferrer noopener">10.1136/medethics-2018-104896</a>
Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit
child; terminal care; article; human; palliative therapy; medical decision making; pediatrics; clinical article; school child; physician; pediatric intensive care unit; intensive care; medical ethics; adolescent; drug therapy; ethical dilemma; clinician; special situation for pharmacovigilance
Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.
Kingsley J; Clark J; Lewis-Newby M; Dudzinski DM; Diekema D
Journal of Medical Ethics
2023
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<a href="http://doi.org/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener">10.1136/jme-2023-108912</a>
On the difficulty of neurosurgical end of life decisions
Adolescent Adult Aged Aged; PedPal Lit; 80 and over Brain Injuries/surgery/therapy Child Child; Preschool Decision Making Ethics Consultation Female Humans Intracranial Hemorrhages/surgery/therapy Male Middle Aged Neurosurgical Procedures/ethics Patient Care Team Prognosis Prospective Studies Withholding Treatment/ethics
OBJECTIVE: To analyse the process of end of life decisions in a neurosurgical environment. METHODS: All 113 neurosurgical patients, who were subject to so called end of life decisions within a one year period were prospectively enrolled in a computerised data bank. Decision pathways according to patient and physician related parameters were assessed. RESULTS: Leading primary diagnoses of the patients were traumatic brain injury and intracranial haemorrhage. Forty-five patients had undergone an emergency neurosurgical operation prior to end of life decision, N = 69 were conservatively treated, which included intracranial pressure recording, or they were not offered neurosurgical care because of futile prognosis. N = 111 died after a median of two (zero to nine) days. Two, in whom the end of life decisions were revised, survived. Clear decisions to terminate further treatment were made by a senior staff member on call being informed by the senior resident on call (27.4%), difficult decisions on the basis of extensive round discussions (71.7%), and very difficult decision by an interdisciplinary ethical consult (0.9%). Decisions were further substantiated by electrophysiological examinations in N = 59. CONCLUSION: End of life decisions are to be considered standard situations for neurosurgeons. These decisions may reach a high rate of "positive" prediction, if substantiated by electrophysiological examinations as well as on the grounds of clinical experience and respect for the assumed will of the patient. The fact that patients may survive following revision of an end of life decision underlines the necessity for repeated reassessment of these decisions. Ethical training for neurosurgeons is to be encouraged.
2006
Schaller C; Kessler M
Journal Of Medical Ethics
2006
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Journal Article
<a href="http://doi.org/10.1136/jme.2005.011767" target="_blank" rel="noreferrer">10.1136/jme.2005.011767</a>
Opinions Of Paediatricians Who Teach Neonatal Resuscitation About Resuscitation Practices On Extremely Preterm Infants In The Delivery Room.
Management; Viability; Decision Making; Attitudes; Born; Ethics; Social Issues; Health; Social Sciences; Biomedical; Obstetricians; Ethics Medical; Care And Treatment; Ethical Aspects; Practice Guidelines (medicine); Cpr (first Aid); Methods; Infant
Clinical Ethics; Decision-making; End Of Life; Neonatology; Perinatal Mortality
Abstract
Objective To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23–26 weeks.
Methods Cross-sectional study with an internationally validated electronic questionnaire (December 2011–September 2013) sent to the instructors of the Neonatal Resuscitation Program of the Brazilian Society of Paediatrics on parental counselling practices, medical limits for resuscitation of extremely preterm infants and medical considerations for decision-making in this group of infants. The analysis was descriptive.
Results Among 685 instructors, 560 (82%) agreed to participate. Only 5%–13% reported having opportunity for antenatal counselling parents: if called, 22% reported discussing with the family about the possibility not to resuscitate in the DR; 63% about the possibility of death in the DR and 89% about the possibility of death in the neonatal unit. If the parents did not agree with the advice of the paediatrician, 30%–50% of the respondents would follow the procedures they advised regardless of the opinion of the parents. The higher the gestational age, the lower is the percentage of paediatricians who believed that parents should participate in decision-making. Only 9% participants reported the existence of written guidelines at their hospital on initiation of resuscitation in the DR at limits of viability, but 80% paediatricians reported using some criteria for limiting resuscitation in the DR.
Conclusion The picture obtained in this study of Brazilian paediatricians indicates that resuscitation of extremely preterm infants is permeated by ambivalence and contradictions.
Ruth Guinsburg
Journal Of Medical Ethics
2016
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doi:10.1136/medethics-2015-103173
Research ethics committees and paternalism
Humans; Mental Competency; Paternalism; Risk Assessment; Research; Informed Consent; Moral Obligations; Altruism; Ethics Committees; Biomedical and Behavioral Research
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
Edwards SJ; Kirchin S; Huxtable R
Journal Of Medical Ethics
2004
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Journal Article
<a href="http://doi.org/10.1136/jme.2002.000166" target="_blank" rel="noreferrer">10.1136/jme.2002.000166</a>
Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?
Child; Humans; retrospective studies; Intensive Care Units; Terminal Care; Medical Futility; Withholding Treatment; Professional-Family Relations; Culture; Conflict (Psychology); Religion and Psychology; Pediatric
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.
2013-09
Brierley J; Linthicum J; Petros A
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100104" target="_blank" rel="noreferrer">10.1136/medethics-2011-100104</a>
The acceptability among young Hindus and Muslims of actively ending the lives of newborns with genetic defects
2014-03
Kamble S; Ahmed R; Sorum PC; Mullet E
Journal Of Medical Ethics
2014
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Journal Article
<a href="http://doi.org/10.1136/medethics-2012-100934" target="_blank" rel="noreferrer">10.1136/medethics-2012-100934</a>
The age limit for euthanasia requests in the Netherlands: a Delphi study among paediatric experts
Humans; Child; Consensus; Netherlands; Delphi Technique; Minors; Euthanasia
Background The Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia. Objective Gain insight in paediatric experts’ views about which criteria are important to assess capacity, from what age minors can meet those criteria, what an assessment procedure should look like and what role parents should have. Methods A Delphi study with 16 experts (paediatricians, paediatric nurses and paediatric psychologists) who work in Children Comfort Teams in Dutch academic hospitals. The questionnaire contained statements concerning criteria for capacity and procedural criteria. Consensus was defined as ≥80% agreement. Results The experts agreed that five criteria for capacity, found in a previous literature study, are all important. They agreed that some children between ages 9 and 11 could meet all the criteria. Consensus was reached for the statements that the entire medical team should be involved in the decision making and that a second independent expert must assess the case. Experts agreed that the parents’ opinion is relevant and should always be taken into account, but it need not be decisive. Conclusion This study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further.
de Keijzer SC; Widdershoven G; Verhagen AAE; Pasman HR
Journal of Medical Ethics
2023
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<a href="http://doi.org/10.1136/jme-2022-108448" target="_blank" rel="noreferrer noopener">10.1136/jme-2022-108448</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
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).
Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
The role of doctors' religious faith and ethnicity in taking ethically controversial decisions during end-of-life care
Spirituality
BACKGROUND AND AIMS: The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares ethnicity and religious faith in the medical and general UK populations, and reports on their associations with ethically controversial decisions taken when providing care to dying patients. METHOD: A postal survey of 3733 UK medical practitioners, of whom 2923 reported on the care of their last patient who died. FINDINGS: Specialists in care of the elderly were somewhat more likely to be Hindu or Muslim than other doctors; palliative care specialists were somewhat more likely to be Christian, religious and 'white' than others. Ethnicity was largely unrelated to rates of reporting ethically controversial decisions. Independently of speciality, doctors who described themselves as non-religious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life, and to have discussed these decisions with patients judged to have the capacity to participate in discussions. Speciality was independently related to wide variations in the reporting of decisions taken with some intent to end life, with doctors in 'other hospital' specialities being almost 10 times as likely to report this when compared with palliative medicine specialists, regardless of religious faith. CONCLUSIONS: Greater acknowledgement of the relationship of doctors' values with clinical decision-making is advocated.
2010
Seale C
Journal Of Medical Ethics
2010
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).
Journal Article
<a href="http://doi.org/10.1136/jme.2010.036194" target="_blank" rel="noreferrer">10.1136/jme.2010.036194</a>
Whose information is it anyway? Informing a 12-year-old patient of her terminal prognosis
PedPal Lit; 3; Age Factors Attitude of Health Personnel Attitude to Health Child Cohort Studies Communication Barriers Curriculum; as they pass through a modern medical curriculum. DESIGN: A cohort study of students entering Glasgow University's new medical curriculum in October 1996. METHODS: Students' responses obtained before year 1 and at the end of years 1; Disclosure Female Humans Leukemia/psychology Parents/psychology Paternalism Personal Autonomy Physician-Patient Relations/ethics Prognosis Research Support; few students chose the consensus answer before year 1 and there was no significant movement towards consensus at any point during the course. In defence of their decision to withhold information; Medical/psychologyTerminally Ill%X OBJECTIVE: To examine students' attitudes and potential behaviour towards informing a 12-year-old patient of her terminal prognosis in a situation in which her parents do not wish her to be told; Non-U.S. Gov't Students
2005
Goldie J; Schwartz L; Morrison J
Journal Of Medical Ethics
2005
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).
Journal Article
<a href="http://doi.org/10.1136/jme.2004.009886" target="_blank" rel="noreferrer">10.1136/jme.2004.009886</a>
Worth living or worth dying? The views of the general public about allowing disabled children to die
Allocation of Health Care Resources; Clinical Ethics; End-of-life; Ethics; Quality/Value of Life/Personhood
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed. METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making. RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment. CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
Brick C; Kahane G; Wilkinson D; Caviola L; Savulescu J
Journal of Medical Ethics
2019
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).
<a href="http://doi.org/10.1136/medethics-2019-105639" target="_blank" rel="noreferrer noopener">10.1136/medethics-2019-105639</a>