The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care
children; euthanasia; youth; attitudes toward death and dying; silence
In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.
Campbell S; Moola FJ; Gibson JL; Petch J; Denburg A
Omega
2022
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/10.1177/00302228211067034" target="_blank" rel="noreferrer noopener">10.1177/00302228211067034</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
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-2013-101328" target="_blank" rel="noreferrer">10.1136/medethics-2013-101328</a>
Organ donation after euthanasia in children: Belgian and Dutch perspectives
Child; child; article; human; palliative therapy; Only Child; ethics; intensive care; euthanasia; organ donor; pediatric surgery
Organ donation after euthanasia has been performed more than 70 times in Belgium and the Netherlands combined (personal communication, Jan Bollen, 2018). These two countries allow for euthanasia in minors as well, while Luxembourg, Colombia and Canada only allow adults to undergo euthanasia. A Dutch guideline on organ donation after euthanasia focuses on mentally competent adults, with a predominance of neurodegenerative diseases.1 The question arises whether organ donation after euthanasia should be possible in children and adolescents, and what are the legal, medical and ethical conditions for the combined procedure.
Bollen JAM; Ten Hoopen R; Van Der Hoeven MAHBM; Shaw D; Brierley J; Ysebaert D; Van Heurn LWE; Van Mook WNKA
Archives of Disease in Childhood
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/archdischild-2018-315560" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315560</a>
Physician-assisted Dying For Children Is Conceivable For Most Dutch Paediatricians, Irrespective Of The Patient's Age Or Competence To Decide
Dutch Euthanasia Law; Euthanasia; Life Expectancy; Physician-assisted Dying; Suffering; Terminally Ill Children
Aim: Paediatricians caring for severely ill children may receive requests for physician-assisted dying (PAD). Dutch euthanasia law only applies to patients over 12 who make well-considered requests. These limitations have been widely debated, but little is known about paediatricians' positions on PAD. We explored the situations in which paediatricians found PAD conceivable and described the roles of the patient and parents, the patient's age and their life expectancy.Methods: We sent a questionnaire to a national sample of 276 Dutch paediatricians and carried out semi-structured interviews with eight paediatricians.Results: The response rate was 62%. Most paediatricians said performing PAD on request was conceivable (81%), conceivability was independent of the patient's age and whether the patient or parent(s) requested it. The paediatricians interviewed felt a duty to relieve suffering, irrespective of the patient's age or competency to decide. When this was not possible through palliative care, PAD was seen as an option for all patients who were suffering unbearably, although some paediatricians saw parental agreement and reduced life expectancy as prerequisites.Conclusion: Most Dutch paediatricians felt PAD was conceivable, even under the age of 12 if requested by the parents. They seemed driven by a sense of duty to relieve suffering.
Bolt Eva Elizabeth; Flens Eva Quirien; Pasman HRoeline Willemijn; Willems Dick; Onwuteaka-Philipsen Bregje Dorien
Acta Paediatrica
2017
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).
10.1111/apa.13620
Limitations in the approach health caregivers can take in end-of-life care decisions
Euthanasia; health care provider; Krabbe; Sandhoff
BACKGROUND: In the terminal stages of neuro-metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely. CASES: A 2.5-year-old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17-month-old male Krabbe patient (diagnosed at 5 months of age) were admitted to the hospital with hypernatraemic dehydration and bronchopneumonia, respectively, within 10 days of each other. Both patients developed respiratory arrest short after admission and were supported with mechanical ventilation. Both families gave written consent to end life support, but their wishes could not be accepted according to Turkish law. CONCLUSIONS: Specialists are expected to communicate well with families and give continuous care while respecting the opinions of patients' families on the timing of the withdrawal of life support. However, ethical and legal regulations on the conduct of health care professionals in these circumstances are unclear in Turkey and should be developed rapidly.
2014-07
Bülbül S; Sürücü M; Karavaizoğlu C; Eke M
Child: Care, Health And Development
2014
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/10.1111/cch.12171" target="_blank" rel="noreferrer">10.1111/cch.12171</a>
Why Palliative Care For Children Is Preferable To Euthanasia
End Of Life; Ethics; Euthanasia; Palliative Care; Pediatrics
Beneficence; Child; Child Welfare/ethnology; Europe; Euthanasia/ethics; Humans; Palliative Care/ethics; Pediatrics/standards; Terminal Care/ethics
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
Carter Brian S
The American Journal Of Hospice & Palliative Care
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).
10.1177/1049909114542648
Creation of a neonatal end-of-life palliative care protocol
Humans; infant; United States; Questionnaires; Professional-Family Relations; Euthanasia; Clinical Protocols; Delphi Technique; Counseling; Internet; Tissue and Organ Procurement; Non-U.S. Gov't; Research Support; Newborn; empathy; Palliative Care/standards; social support; Terminal Care/standards; Culture; Family/ethnology/psychology; Neonatology/standards; Passive/psychology; Ventilator Weaning
OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological support. STUDY DESIGN: Using Internet e-mail, a Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build a consensus document. Institutional review was granted and respondents gave consent. Recruitment was conducted at medical, ethics, nursing, and multidisciplinary organization meetings. Synthesis of 16 palliative care/end-of-life protocols developed by regional, institutional, and parent organizations was included. Participants from 93 locations in the US and 4 abroad gave feedback to 13 questions derived from clinical experience and the literature. The data underwent four rounds of analysis with 95% retention of the 101 participants over an 18-month period. RESULTS/CONCLUSION: Specific consensus-based recommendations are presented with a description of palliative care; categories of candidates; planning and education needed to begin palliative care services; relationships between community and tertiary centers; components of optimally supported neonatal death; family care, including cultural, spiritual, and practical needs; ventilator withdrawal, including pain and symptom management; recommendations when death does not occur after cessation of life-extending interventions; family follow-up care; and necessary ongoing staff support.
2002
Catlin A; Carter B
Journal Of Perinatology
2002
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/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">10.1038/sj.jp.7210687</a>
Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey
Female; Humans; Male; Prevalence; Questionnaires; Aged; Middle Aged; Euthanasia; Age Factors; Sex Factors; Time Factors; Suicide; 80 and over; cause of death; Active; Neoplasms/therapy; Terminal Care/statistics & numerical data; Assisted/legislation & jurisprudence/statistics & numerical data; Home Care Services/statistics & numerical data; Belgium/epidemiology; Euthanasia/legislation & jurisprudence/statistics & numerical data; Voluntary/statistics & numerical data
BACKGROUND: Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an explicit request from the patient, in Flanders, Belgium, where euthanasia is legal. METHODS: We mailed a questionnaire regarding the use of life-ending drugs with or without explicit patient request to physicians who certified a representative sample (n = 6927) of death certificates of patients who died in Flanders between June and November 2007. RESULTS: The response rate was 58.4%. Overall, 208 deaths involving the use of life-ending drugs were reported: 142 (weighted prevalence 2.0%) were with an explicit patient request (euthanasia or assisted suicide) and 66 (weighted prevalence 1.8%) were without an explicit request. Euthanasia and assisted suicide mostly involved patients less than 80 years of age, those with cancer and those dying at home. Use of life-ending drugs without an explicit request mostly involved patients 80 years of older, those with a disease other than cancer and those in hospital. Of the deaths without an explicit request, the decision was not discussed with the patient in 77.9% of cases. Compared with assisted deaths with the patient's explicit request, those without an explicit request were more likely to have a shorter length of treatment of the terminal illness, to have cure as a goal of treatment in the last week, to have a shorter estimated time by which life was shortened and to involve the administration of opioids. INTERPRETATION: Physician-assisted deaths with an explicit patient request (euthanasia and assisted suicide) and without an explicit request occurred in different patient groups and under different circumstances. Cases without an explicit request often involved patients whose diseases had unpredictable end-of-life trajectories. Although opioids were used in most of these cases, misconceptions seem to persist about their actual life-shortening effects.
2010
Chambaere K; Bilsen J; Cohen J; Onwuteaka-Philipsen BD; Mortier F; Deliens L
Canadian Medical Association Journal
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/10.1503/cmaj.091876" target="_blank" rel="noreferrer">10.1503/cmaj.091876</a>
Withdrawing artificial feeding from children with brain damage
Child; Humans; Withholding Treatment; Treatment Refusal; Euthanasia; Enteral Nutrition; Ethics; Medical; Preschool; Death and Euthanasia; Brain Diseases; Brain Damage; Chronic; Passive; Persistent Vegetative State
1995
Cranford R
Bmj (clinical Research Ed.)
1995
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/bmj.311.7003.464" target="_blank" rel="noreferrer">10.1136/bmj.311.7003.464</a>
Self-requested euthanasia for children in Belgium
Humans; Young Adult; Palliative Care; Mental Competency; Personal Autonomy; Euthanasia; Choice Behavior; Minors; Europe; Belgium; Patient Rights; quality of life; adolescent; decision making; Active; Voluntary; Wedge Argument
In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been incorporated into national legislation in the past 20 years. The Belgian Act on Patients' Rights was promulgated in 2002. In the same year, the Belgian Act on Palliative Care was adopted, which grants access to palliative care that focuses on improving quality of ...
2014-02
Dan B; Fonteyne C; de Cléty Stéphan Clément
Lancet
2014
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/10.1016/S0140-6736(14)60110-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)60110-0</a>
Medical assistance in dying: A paediatric perspective
infant; Canada; newborn; law; life; responsibility; medical care; euthanasia; health care quality; pediatrician; pediatrics; human; article; child; consultation; juvenile; protein unfolding
The Supreme Court decision in Carter v. Canada (2015) has led to changes to the Canadian Criminal Code, such that physician-assisted death is now a legal option for consenting adult patients who have a 'grievous and irremediable medical condition' that causes 'enduring' and 'intolerable' suffering. In June 2016, Bill C-14 was enacted, allowing medical assistance in dying (MAID) for an eligible adult whose death is 'reasonably foreseeable'. An independent report on the status of 'mature minors' (who are currently excluded under federal legislation), with focus on their potential eligibility for MAID, was required by the 2016 Act and is expected to be presented to Parliament by December 2018. Ensuring that newborns, children and youth receive the highest possible standard of care as they are dying is a privilege and a responsibility for physicians and allied professionals. Bringing a thoughtful, respectful and personal approach to every end-of-life situation is an essential and evolving duty of care, and the process should meet each patient's (and family's) unique social, cultural and spiritual needs. This statement describes the current Canadian legal and medical context of MAID and articulates a paediatric perspective that has emerged from - and been informed by - the broad, structured consultation process unfolding in Canada and elsewhere. Although 'mature minors' are the only youth currently mandated for further legislative consideration in Canada, the need to examine requests for and attitudes around MAID for minors of all ages remains compelling for two main reasons: . Canadian health care professionals are increasingly being approached by the parents of 'never-competent' infants and children, including those too young to make a reasoned decision, and by youth themselves, to discuss MAID-related issues. Results from a Canadian Paediatric Surveillance Program (CPSP) survey, discussed below, indicate that parents raise such questions with paediatricians more often than do minors. . The discussion of MAID policy in Canada has been framed as much by the issue and context of suffering as by considerations of autonomy. While current legislation clearly prohibits MAID for incapable persons at the request of any other person, it is possible that parents may request MAID on behalf of their dying child.
Davies D
Paediatrics & Child Health
2018
<a href="http://doi.org/10.1093/pch/pxx181" target="_blank" rel="noreferrer noopener">10.1093/pch/pxx181</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
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/jme-2022-108448" target="_blank" rel="noreferrer noopener">10.1136/jme-2022-108448</a>
Forgoing life-sustaining treatments in children: a comparison between Northern and Southern European pediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; decision making; Adult; Hospital Mortality; Prospective Studies; Euthanasia; Patient Participation; Europe; Pediatric; adolescent; Preschool; Empirical Approach; Death and Euthanasia; infant; Newborn; ICU Decision Making; Parents/psychology; Organizational; Passive/psychology
OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine pediatric intensive care units: 12 from northern Europe and 27 from southern Europe. PATIENTS: All consecutive deaths were recorded over a 4-month period. Group 1 and group 2 included patients who died in northern and southern pediatric intensive care units, respectively. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three hundred fifty children were enrolled, 68 in group 1 and 282 in group 2. The decision to forgo life-sustaining treatment was made in 116 children (group 1, n = 32; group 2, n = 84). In both groups, the decision was discussed by caregivers during a formal meeting. The decision to forgo life-sustaining treatment was more often made in northern countries than in southern ones (47% vs. 30%, p =.02). Parents were informed of this decision in 95% of cases in group 1 vs. 68% in group 2 (p =.01). In both groups, the final decision was made by the medical staff. Parents' contributions to the decision-making process did not differ between the two groups according to the practitioners' opinion. The decision was documented in the medical charts in 100% of the cases in group 1 and in 51% of the cases in group 2 (p =.0001). CONCLUSIONS: The decision-making process appears to be similar between northern and southern European countries. The respective contributions of the parents and the medical staff in the final decision itself seem to be identical between northern and southern countries. However, in northern European countries, the level of parents' information about the decision-making process appears higher and the decision is more often documented in the medical chart.
2004
Devictor DJ; Nguyen DT
Pediatric Critical Care Medicine
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/10.1097/01.PCC.0000123553.22405.E3" target="_blank" rel="noreferrer">10.1097/01.PCC.0000123553.22405.E3</a>
Care for dying patients.
Humans; Palliative Care; Advance Directives; Physician-Patient Relations; Family; Euthanasia; Communication; Physicians; decision making; advance care planning; DNAR; Withholding Treatment; Terminal Care; Passive
1997
Emanuel EJ
Lancet
1997
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/10.1016/s0140-6736(05)62952-2" target="_blank" rel="noreferrer">10.1016/s0140-6736(05)62952-2</a>
The double effect of pain medication: separating myth from reality
Humans; Analgesics; Intention; Double Effect Principle; Suicide; Death and Euthanasia; Euthanasia; Palliative Care/ethics; Pain/drug therapy; Opioid/adverse effects/therapeutic use; Assisted; Refusal to Treat; Respiratory Insufficiency/chemically induced
The principle of double effect is used to justify the administration of medication to relieve pain even though it may lead to the unintended, although foreseen, consequence of hastening death by causing respiratory depression. Although a review of the medical literature reveals that the risk of respiratory depression from opioid analgesic is more myth than fact and that there is little evidence that the use of medication to control pain hastens death, the belief in the double effect of pain medication remains widespread. Applying the principle of double effect to end-of-life issues perpetuates this myth and results in the undertreatment of physical suffering at the end of life. The concept of double effect of opioids also has been used in support of legalization of physician-assisted suicide and euthanasia.
1998
Fohr SA
Journal Of Palliative Medicine
1998
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/10.1089/jpm.1998.1.315" target="_blank" rel="noreferrer">10.1089/jpm.1998.1.315</a>
Forgoing life support across borders: who decides and why?
Child; Humans; Intensive Care Units; decision making; Adult; Euthanasia; Pediatric; Empirical Approach; Death and Euthanasia; Family/psychology; ICU Decision Making; Organizational; Intensive Care/ethics/psychology; Passive/ethics/psychology; Patient Participation/psychology
2004
Frader JE
Pediatric Critical Care Medicine
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/10.1097/01.pcc.0000124017.90899.c5" target="_blank" rel="noreferrer">10.1097/01.pcc.0000124017.90899.c5</a>
Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children?
adolescent; Child; Humans; Terminally Ill; referral and consultation; Euthanasia; Health Services Needs and Demand; Belgium; Freedom
2014-06
Friedel M
International Journal Of Palliative Nursing
2014
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/10.12968/ijpn.2014.20.6.265" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.6.265</a>
Rethinking the role of tube feeding in patients with advanced dementia
Humans; United States; Medical Futility; Withholding Treatment; Euthanasia; Religion and Medicine; Risk Assessment; Medical; Mental Health Therapies; Professional Patient Relationship; Death and Euthanasia; decision making; Pneumonia; Psychological; Stress; Legislation; Passive; Empirical Research; Alzheimer Disease/therapy; Aspiration/prevention & control; Dementia/therapy; Enteral Nutrition/adverse effects/standards; 'Physical'; Restraint
2000
Gillick MR
The New England Journal Of Medicine
2000
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/10.1056/nejm200001203420312" target="_blank" rel="noreferrer">10.1056/nejm200001203420312</a>
Identifying futility in a paediatric critical care setting: a prospective observational study
Child; Female; Humans; Male; Intensive Care Units; Medical Futility; Prognosis; Prospective Studies; Euthanasia; Severity of Illness Index; Hospitals; Teaching; quality of life; Preschool; Empirical Approach; Death and Euthanasia; infant; ICU Decision Making; Pediatric/organization & administration; Patient Admission/statistics & numerical data; London; Health Care and Public Health; Critical Illness/classification; Cost Control; Passive/statistics & numerical data
AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care unit of a North London teaching hospital over a nine month period. Three previously defined criteria for futility were used: (1) imminent demise futility (those with a mortality risk greater than 90% using the Paediatric Risk of Mortality (PRISM II) score); (2) lethal condition futility (those with conditions incompatible with long term survival); and (3) qualitative futility (those with unacceptable quality of life and high morbidity). RESULTS: A total of 662 children accounting for 3409 patient bed days were studied. Thirty four patients fulfilled at least one of the criteria for futility, and used a total of 104 bed days (3%). Only 33 (0.9%) bed days were used by patients with mortality risk greater than 90%, 60 (1.8%) by patients with poor long term prognosis, and 16 (0.5%) by those with poor quality of life. Nineteen of 34 patients died; withdrawal of treatment was the mode of death in 15 (79%). CONCLUSIONS: Cost containment initiatives focusing on futility in the paediatric intensive care unit setting are unlikely to be successful as only relatively small amounts of resources were used in providing futile care. Paediatricians are recognising futility early and may have taken ethically appropriate measures to limit care that is futile.
2001
Goh AY; Mok Q
Archives Of Disease In Childhood
2001
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/adc.84.3.265" target="_blank" rel="noreferrer">10.1136/adc.84.3.265</a>
Rights of the child: to die?
Child; Humans; Terminally Ill; Euthanasia; Child Advocacy; Europe; Patient Rights
The legal position of the child as a vulnerable individual requires us as a society to treat them with special consideration in regard to the sanctity of life. In UK law, euthanasia is currently illegal, although there are some moves afoot to have this changed for those who have reached majority (18 years of age in the UK).
2014-04
Gormley-Fleming Liz; Campbell A
British Journal Of Nursing
2014
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/10.12968/bjon.2014.23.6.302" target="_blank" rel="noreferrer">10.12968/bjon.2014.23.6.302</a>
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
Attitude Of Health Personnel;decision Making;perinatal Care;terminal Care/psychology; Abortion; Adult; Aged; Attitude To Death; Euthanasia; Female; Fetal Diseases; Humans; Induced/psychology; Infant; Male; Mexico; Middle Aged; Newborn; Nurses/psychology; Palliative Care/psychology; Passive/psychology; Perinatal Death; Physicians/psychology; Pregnancy; Religion; Social Workers/psychology; Young Adult
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.
Grether P; Lisker R; Loria A; Alvarez-del-Rio A
Salud Publica De Mexico
2015
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="https://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">26679311</a>
Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands
Female; Humans; Male; Adult; Data Collection; Aged; Middle Aged; Euthanasia; Netherlands; Suicide; 80 and over; Empirical Approach; Death and Euthanasia; Active; Random Allocation; Euthanasia/statistics & numerical data; Empirical Research; Assisted/statistics & numerical data
BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS: In 114 cases, the physician's intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS: There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patient's inability to take the medication or because of problems with the completion of physician-assisted suicide.
2000
Groenewoud JH; van der Heide A; Onwuteaka-Philipsen BD; Willems DL; van der Maas PJ; van der Wal G
The New England Journal Of Medicine
2000
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/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">10.1056/NEJM200002243420805</a>
Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients
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
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
Hardart GE; Truog RD
Critical Care Medicine
2003
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/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">10.1097/01.ccm.0000084805.15352.01</a>
Consensus guidelines on analgesia and sedation in dying intensive care unit patients
Humans; Intensive Care Units; Terminally Ill; Consensus; Euthanasia; Suicide; Stress; Empirical Approach; Death and Euthanasia; Practice Guidelines; Pain/drug therapy; Active; Hypnotics and Sedatives/therapeutic use; Assisted; Terminal Care/standards; Psychological/drug therapy; Analgesics/therapeutic use; Palliative Care/methods/standards
BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. METHODS: Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). RESULTS: After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. CONCLUSION: Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.
2002
Hawryluck LA; Harvey WR; Lemieux-Charles L; Singer PA
Bmc Medical Ethics
2002
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/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">10.1186/1472-6939-3-3</a>
The role of nurses in physician-assisted deaths in Belgium
Female; Humans; Male; Young Adult; Adult; Data Collection; Logistic Models; Questionnaires; Middle Aged; Euthanasia; Nurse's Role; Confidence Intervals; Odds Ratio; Suicide; Belgium; decision making; Active; home care services; Assisted/statistics & numerical data; Voluntary/statistics & numerical data; Active/statistics & numerical data; Terminal Care/methods/statistics & numerical data
BACKGROUND: Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request (euthanasia) or without an explicit request. We also examined factors associated with these deaths. METHODS: In 2007, we surveyed 1678 nurses who, in an earlier survey, had reported caring for one or more patients who received a potential life-ending decision within the year before the survey. Eligible nurses were surveyed about their most recent case. RESULTS: The response rate was 76%. Overall, 128 nurses reported having cared for a patient who received euthanasia and 120 for a patient who received life-ending drugs without his or her explicit request. Respectively, 64% (75/117) and 69% (81/118) of these nurses were involved in the physician's decision-making process. More often this entailed an exchange of information on the patient's condition or the patient's or relatives' wishes (45% [34/117] and 51% [41/118]) than sharing in the decision-making (24% [18/117] and 31% [25/118]). The life-ending drugs were administered by the nurse in 12% of the cases of euthanasia, as compared with 45% of the cases of assisted death without an explicit request. In both types of assisted death, the nurses acted on the physician's orders but mostly in the physician's absence. Factors significantly associated with a nurse administering the life-ending drugs included being a male nurse working in a hospital (odds ratio [OR] 40.07, 95% confidence interval [CI] 7.37-217.79) and the patient being over 80 years old (OR 5.57, 95% CI 1.98-15.70). INTERPRETATION: By administering the life-ending drugs in some of the cases of euthanasia, and in almost half of the cases without an explicit request from the patient, the nurses in our study operated beyond the legal margins of their profession.
2010
Inghelbrecht E; Bilsen J; Mortier F; Deliens L
Canadian Medical Association Journal
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/10.1503/cmaj.091881" target="_blank" rel="noreferrer">10.1503/cmaj.091881</a>
Attitudes toward limitation of support in a pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Medical Futility; Prospective Studies; Euthanasia; Ethics; Medical; quality of life; Pediatric; patient care team; Caregivers/psychology; ICU Decision Making; Resuscitation Orders/psychology; Passive/psychology; Life Support Care/psychology
OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits were collected over time. DESIGN: Prospective survey of caregiver opinions. SETTING: PICU in an academic tertiary care children's hospital. SUBJECTS: A total of 68 intensive care nurses, 11 physicians attending in the PICU, 10 critical care and anesthesia fellows, and 24 anesthesia and pediatric residents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During a 6-month period, 503 patients were admitted to the PICU. Within this time period, 52.4% of all deaths were preceded by limitation of support, with 100% of noncardiac surgical deaths preceded by limitation of medical interventions. At least one caregiver wished to limit care for 63 of these patients (12.5%). When caregivers wished to limit support they most frequently wished to limit invasive modes of support such as cardiopulmonary resuscitation (94%) and hemodialysis (83%). The ethical rationales identified most often for wishing to limit support were burden vs. benefit (88%) and qualitative futility (83%). Preadmission quality of life was cited less frequently (50%). Caregivers were less likely to limit care on the basis of quality of life. Nurses and physicians in the PICU were very similar to each other in the types of support they thought should be limited and their ethical rationales. CONCLUSIONS: When making decisions about whether or not to limit care for a patient, caregivers were more likely to rely on the perceived benefit to the patient than preadmission quality of life.
2000
Keenan HT; Diekema DS; O'Rourke PP; Cummings P; Woodrum DE
Critical Care Medicine
2000
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/10.1097/00003246-200005000-00055" target="_blank" rel="noreferrer">10.1097/00003246-200005000-00055</a>
Euthanasia for children and young people?
adolescent; Child; Humans; Young Adult; Great Britain; Euthanasia; Europe
In February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering 'constant and unbearable pain', and whose parents and health professionals agree with the decision. The child also has to be interviewed by a psychologist or psychiatrist to ascertain and certify their 'capacity of discernment'.
2014-05
Kelly D
International Journal Of Palliative Nursing
2014
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/10.12968/ijpn.2014.20.5.211" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.5.211</a>
Death by request in the Netherlands: facts, the legal context and effects on physicians, patients and families
Humans; Attitude of Health Personnel; Euthanasia; Netherlands; Religion and Medicine; Suicide; Active; Attitude to Death; Euthanasia; Physicians/px [Psychology]; Suicide; Assisted/es [Ethics]; Assisted/lj [Legislation & Jurisprudence]; Assisted/px [Psychology]; Ethical Review/lj [Legislation & Jurisprudence]; Physician Assisted Dying PAD; Voluntary/es [Ethics]; Voluntary/lj [Legislation & Jurisprudence]; Voluntary/px [Psychology]
2010
Kimsma GK
Medicine, Health Care And Philosophy
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/10.1007/s11019-010-9265-0" target="_blank" rel="noreferrer">10.1007/s11019-010-9265-0</a>
Termination of nutrition and hydration in a child with vegetative state
Female; Humans; Parents; Withholding Treatment; Euthanasia; Dissent and Disputes; Group Processes; Enteral Nutrition; Death and Euthanasia; decision making; infant; Brain Diseases; Child Abuse Amendments 1984; Clinical; Coma/etiology/therapy; Connecticut; Ethics Committees; Federal Government; Government Agencies; Government Regulation; Hartford Hospital (CT); Passive/legislation & jurisprudence; Right to Die/legislation & jurisprudence; Status Epilepticus/complications
A child in a vegetative state may present difficult decisions for physicians and families regarding the course of treatment. We report a case of a child who entered a prolonged vegetative state following status epilepticus. The child's parents requested termination of artificial means of nutrition and hydration. That request culminated in a complex legal intervention by multiple state agencies and attracted local media attention. This article presents the details of the case and discusses the medical and legal complexities encountered. The diagnosis and prognosis of the persistent vegetative state in children have recently been defined. Decision making in these circumstances should be based on adequate, careful clinical evaluation of the medical facts. Hospital ethics committees can provide an independent forum in which the diverse viewpoints in a case may be examined. Decision making should optimally be accomplished between families and caretakers.
1994
Leicher CR; DiMario FJ
Archives Of Pediatrics & Adolescent Medicine
1994
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/10.1001/archpedi.1994.02170010089021" target="_blank" rel="noreferrer">10.1001/archpedi.1994.02170010089021</a>
Physician-hastened Death In Young Children: Getting To Underlying Assumptions.
Ethics; Euthanasia; Infants; Physician-assisted Death; Suffering; Worldview
Significant changes are occurring in Canada's health care system regarding physician-hastened death (PHD). In the Netherlands, where the Groningen Protocol is in place, euthanasia in now legal for infants and children. The present article considers whether PHD should be applied to young children in Canada and how these paediatric cases differ from adult cases. The discussion analyzes and critiques the underlying assumptions necessary to believe that PHD is good. The role of worldviews in the deliberation of any moral question and the importance of recognizing personal bias are highlighted. The authors present common issues regarding PHD, including suffering, parental autonomy and future quality of life, and examine the basic assumptions on which these arguments are made. Finally, they conclude that the assumptions required are incorrect and that PHD should not be allowed in the case of children. Instead, policies should continue to strive for the protection and promotion of health in all children.
Liao L; Chan D
Journal Of Paediatrics And Child Health
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).
PMCID: PMC4934156
Must patients always be given food and water?
Humans; United States; Withholding Treatment; Social Values; Euthanasia; Risk Assessment; Moral Obligations; Ethics; Parenteral Nutrition; Medical; Death and Euthanasia; Analytical Approach; RDF Project; Passive; Life Support Care/legislation & jurisprudence; Malpractice/legislation & jurisprudence; Philosophical Approach
KIE: The widespread consensus that withholding certain life-sustaining treatments, especially those entailing substantial suffering, is sometimes in a patient's best interest conflicts with our basic instincts when the treatments are food and water. Lynn and Childress examine the medical aspects of various nutritional options and the moral obligations pertinent to decision making. They conclude that, in certain limited cases, malnutrition and dehydration need not be corrected and that nutrition and hydration are not distinguishable morally from other life-sustaining treatments that may on occasion be withheld or withdrawn.
1983
Lynn J; Childress JF
The Hastings Center Report
1983
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/10.2307/3560572" target="_blank" rel="noreferrer">10.2307/3560572</a>
How children die in hospital.
Child; Humans; Death; Palliative Care; symptoms; Euthanasia; Communication; Death; Resuscitation Orders; Longitudinal Studies; Critical Care; Children; Children; Preschool; infant; DNAR; Human; Pediatric intensive care unit; Passive; Hospital Mortality; Infant Mortality; Canuck Place 15 year chart review; dying; Infants; Pediatric intensive care unit
A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236 infants and children who died after hospital admission in Edmonton, Canada between January 1996 and June 1998 met entry criteria. Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days following an acute event were included. Unanticipated deaths were excluded. Eighty-three percent of children died in intensive care settings (64/77), and 78 % (60/77) were intubated prior to their death. Symptoms were recorded in narrative progress notes. Five of 77 (6%) charts contained specific pain assessment and treatment records. Opioid analgesia was provided in 84 % of all cases (65/77). Six (8 %) patients had do not resuscitate (DNNR) orders preceding final hospital admission and 56/71 (79%) remaining patients had documented discussion resulting in DNR decision during final hospital admission. Median time from DNR to death was < 1 day. Mode of death was withdrawal of therapy in 33/77 (43 %), no cardiopulmonary resuscitation (CPR) in 26/77 (34 %), andfailed CPR in 13/77 (17%). Five children were declared brain dead. In only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making regarding end-of-life issues in this pediatric population was deferred very close to the time of death, and only after no remaining curative therapy was available. Acuity of care was very high prior to death. Children are rarely told that they are dying.
2000
McCallum DE; Byrne P; Bruera E
Journal Of Pain And Symptom Management
2000
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/10.1016/s0885-3924(00)00212-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00212-8</a>
Withholding nutrition from seriously ill newborn infants: a parent's perspective
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
1988
Miraie ED
The Journal Of Pediatrics
1988
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/10.1016/s0022-3476(88)80262-2" target="_blank" rel="noreferrer">10.1016/s0022-3476(88)80262-2</a>
Judging the quality of mercy: drawing a line between palliation and euthanasia
Child; Humans; Pediatrics; Euthanasia; Ethics; Suicide; Medical; Palliative Care; Assisted; Passive; 20th Century; History
Clinicians frequently worry that medications used to treat pain and suffering at the end of life might also hasten death. Intentionally hastening death, or euthanasia, is neither legal nor ethically appropriate in children. In this article, we explore some of the historical and legal background regarding appropriate end-of-life care and outline what distinguishes it from euthanasia. Good principles include clarity of goals and assessments, titration of medications to effect, and open communication. When used appropriately, medications to treat symptoms should rarely hasten death significantly. Medications and interventions that are not justifiable are also discussed, as are the implications of palliative sedation and withholding fluids or nutrition. It is imperative that clinicians know how to justify and use such medications to adequately treat suffering at the end of life within a relevant clinical and legal framework.
2014-02
Morrison WE; Kang TI
Pediatrics
2014
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/10.1542/peds.2013-3608F" target="_blank" rel="noreferrer">10.1542/peds.2013-3608F</a>
Physician-assisted suicide--Oregon and beyond
Humans; United States; Great Britain; Euthanasia; Oregon; Suicide; Death and Euthanasia; Active; Terminal Care/standards; Assisted/legislation & jurisprudence/statistics & numerical data; Gonzales v. Oregon; Legal Approach; Supreme Court Decisions; Terminally Ill/legislation & jurisprudence/psychology; Voluntary/legislation & jurisprudence
2005
Okie S
The New England Journal Of Medicine
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/10.1056/NEJMp058004" target="_blank" rel="noreferrer">10.1056/NEJMp058004</a>
Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity
Female; Humans; Male; Intensive Care Units; Prevalence; Logistic Models; Questionnaires; Prospective Studies; Euthanasia; Multivariate Analysis; Ethics; Medical; decision making; Family/psychology; Nonparametric; Statistics; Life Support Care/utilization; Passive; Critical Illness/therapy; Anxiety/epidemiology/etiology; Depressive Disorder/epidemiology/etiology; France/epidemiology
OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the ethics of involving family members in decision-making, particularly about end-of-life issues. DESIGN: Prospective multicenter study. SETTING: Forty-three French intensive care units (37 adult and six pediatric); each unit included 15 patients admitted for longer than 2 days. PATIENTS: Six hundred thirty-seven patients and 920 family members. INTERVENTIONS: Intensive care unit characteristics and data on the patient and family members were collected. Family members completed the Hospital Anxiety and Depression Scale to allow evaluation of the prevalence and potential factors associated with symptoms of anxiety and depression. MEASUREMENTS AND MAIN RESULTS: Of 920 Hospital Anxiety and Depression Scale questionnaires that were completed by family members, all items were completed in 836 questionnaires, which formed the basis for this study. The prevalence of symptoms of anxiety and depression in family members was 69.1% and 35.4%, respectively. Symptoms of anxiety or depression were present in 72.7% of family members and 84% of spouses. Factors associated with symptoms of anxiety in a multivariate model included patient-related factors (absence of chronic disease), family-related factors (spouse, female gender, desire for professional psychological help, help being received by general practitioner), and caregiver-related factors (absence of regular physician and nurse meetings, absence of a room used only for meetings with family members). The multivariate model also identified three groups of factors associated with symptoms of depression: patient-related (age), family-related (spouse, female gender, not of French descent), and caregiver-related (no waiting room, perceived contradictions in the information provided by caregivers). CONCLUSIONS: More than two-thirds of family members visiting patients in the intensive care unit suffer from symptoms of anxiety or depression. Involvement of anxious or depressed family members in end-of-life decisions should be carefully discussed.
2001
Pochard F; Azoulay E; Chevret S; Lemaire F; Hubert P; Canoui P; Grassin M; Zittoun R; LeGall JR; Dhainaut JF; Schlemmer B; Group French FAMIREA
Critical Care Medicine
2001
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/10.1097/00003246-200110000-00007" target="_blank" rel="noreferrer">10.1097/00003246-200110000-00007</a>
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Pediatrics
2009
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/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</a>
The use of drugs with a life-shortening effect in end-of-life care in neonates and infants
Analgesics Opioid; Euthanasia; Muscle Relaxants Central; Potassium Chloride; Practice Patterns Physicians'; Terminal Care; 0 (analgesics Opioid); 0 (muscle Relaxants Central); 660yq98i10 (potassium Chloride); Belgium; Decision Making; Drug Utilization; Humans; Infant; Infant Newborn; Intention; Pain/dt [drug Therapy]; Terminal Care/es [ethics]
OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (<1 year), in a 1-year period (between 1 August 1999 and 31 July 2000) in Flanders, Belgium, the attending physician could be identified and was sent an anonymous questionnaire. The questionnaires relating to deaths directly preceded by the administration of drugs were reviewed by a multi-disciplinary panel. RESULTS: The response rate was 86.6% (253/292). In 57 cases (22.5%), drugs were administered directly before death. In 17/57 cases, the physician explicitly intended to hasten death. In 16/17 cases information about the drug(s) was available: opioids were administered in 14, a muscle relaxant in 5 and potassium chloride in 3 cases. In 13 cases where the lethal effect could be evaluated, the panel judged that the drugs were effective in hastening death in 10 cases. In most cases the estimated life-shortening was <24 h. In 40/57 cases the physician administered drugs to alleviate pain and/or symptoms, taking into account a possible life-shortening effect without explicitly intending it. Opioids were administered in all 30 cases where information about the drug(s) was supplied. In 13 cases the lethal effect could be evaluated, and in 6 cases the panel judged that the drugs had hastened death. CONCLUSIONS: When life-shortening was explicitly intended, (dosages of) drugs were likely to be lethal. Drugs administered also clearly hastened death in some cases where life-shortening was not explicitly intended.
Provoost V; Cools F; Bilsen J; Ramet J; Deconinck P; Vander Stichele R; Vande Velde A; Van Herreweghe I; Mortier F; Vandenplas Y; Deliens L
Intensive Care Medicine
2006
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/10.1007/s00134-005-2863-2" target="_blank" rel="noreferrer">10.1007/s00134-005-2863-2</a>
Medical end-of-life decisions in neonates and infants in Flanders
Euthanasia; Non-U.S. Gov't; PedPal Lit; decision making; Withholding Treatment/statistics & numerical data; 48.9-64.0). Lethal drugs were administered in 15 cases among 117 early neonatal deaths and in two cases among 77 later deaths (13%vs 3%; 70.1-85.5) of the 121 physicians thought that their professional duty sometimes includes the prevention of unnecessary suffering by hastening death and 69 (58%; 95% CI 70.4-82.4) of the 253 deaths studied; Active/psychology/statistics & numerical data Female Humans Infant Infant; and such a decision was made in 14 3 cases (57%; Attitude of Health Personnel Belgium; Newborn Male Pain/therapy Palliative Care/statistics & numerical data Physicians/; p=0.018). The attitude study showed that 95 (79%; psychology Questionnaires Research Support
2005
Provoost V; Cools F; Mortier F; Bilsen J; Ramet J; Vandenplas Y; Deliens L
Lancet
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/10.1016/s0140-6736(05)61028-8" target="_blank" rel="noreferrer">10.1016/s0140-6736(05)61028-8</a>
Variability in physician opinion on limiting pediatric life support
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Medical Staff; Prognosis; Questionnaires; Euthanasia; Fellowships and Scholarships; Regression Analysis; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Pediatrics/statistics & numerical data; ICU Decision Making; Neoplasms/therapy; Terminal Care/psychology; Passive/psychology; Intensive Care/psychology; Hospital/psychology/statistics & numerical data; Medical Oncology/statistics & numerical data
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about withdrawal and limitation of life support in chronically ill patients. In these scenarios, the patient's primary caregiver was the pediatric oncologist. To evaluate the influence of subspecialty training, we compared the attitudes of the pediatric intensivists and the oncologists using scenarios describing critically ill oncology patients. DESIGN: Cross-sectional survey. Each physician was randomly assigned 4 of 8 potential case scenarios. SETTING: A total of 29 American pediatric ICUs. PARTICIPANTS: Pediatric intensive care and oncology attendings and fellows. INTERVENTION: Systematic manipulation of patient characteristics in two hypothetical case scenarios describing 6-year-old female oncology patients presenting to the ICU after the institution of mechanical ventilator support for acute respiratory failure. Cases 1 through 4 described a patient who, before admission, had a 99% projected 1-year probability of survival from her underlying cancer and suffered from severe neurologic disabilities. Cases 5 through 8 described a patient who was neurologically normal before admission and had a /=10% of respondents chose full aggressive management as the most appropriate level of care, whereas another >/=10% chose comfort measures only when viewing the same scenario. The most significant respondent factors affecting choices were professional status (attending vs fellow) and the self-rated importance of functional neurologic status. The majority of respondents (83%) believed that the intensive care and the oncology staff were usually in agreement at their institution about the level of intervention to recommend to the parents. (ABSTRACT TRUNCATED)
1999
Randolph AG; Zollo MB; Egger MJ; Guyatt GH; Nelson RM; Stidham GL
Pediatrics
1999
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/10.1542/peds.103.4.e46" target="_blank" rel="noreferrer">10.1542/peds.103.4.e46</a>