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>
The Groningen protocol--euthanasia in severely ill newborns
Humans; infant; Prognosis; Netherlands; Death and Euthanasia; Practice Guidelines; Newborn; Euthanasia/ethics/legislation & jurisprudence; Intensive Care/ethics/legislation & jurisprudence; Third-Party Consent/legislation & jurisprudence
2005
Verhagen E; Sauer PJ
The New England Journal Of Medicine
2005
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Journal Article
<a href="http://doi.org/10.1056/NEJMp058026" target="_blank" rel="noreferrer">10.1056/NEJMp058026</a>
Ensuring that difficult decisions are honored--even in school settings
Child; Humans; United States; Adult; Parents; Choice Behavior; Minors; adolescent; Death and Euthanasia; decision making; Chronic disease; ICU Decision Making; Students; Cardiopulmonary Resuscitation/contraindications; Disabled Children/legislation & jurisprudence; Emergency Medical Services/ethics/legislation & jurisprudence/standards; Resuscitation Orders/ethics/legislation & jurisprudence; School Health Services/ethics/legislation & jurisprudence/standards; Schools/ethics/legislation & jurisprudence/standards; State Government
2005
Levetown M
The American Journal Of Bioethics
2005
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Journal Article
<a href="http://doi.org/10.1080/152651690927926" target="_blank" rel="noreferrer">10.1080/152651690927926</a>
The costs of nonbeneficial treatment in the intensive care setting
Female; Humans; Male; United States; Patient Discharge; Adult; Medical Futility; Middle Aged; Length of Stay; Dissent and Disputes; Survival Analysis; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Health Care and Public Health; Hospital Costs/statistics & numerical data; Ethics Consultation/utilization; Intensive Care Units/economics/ethics; Intensive Care/economics/ethics/utilization; Life Support Care/economics/ethics/utilization
Ethics consultations have been shown to reduce the use of "nonbeneficial treatments," defined as life-sustaining treatments delivered to patients who ultimately did not survive to hospital discharge, when treatment conflicts occurred in the adult intensive care unit (ICU). In this paper we estimated the costs of nonbeneficial treatment using the results from a randomized trial of ethics consultations. We found that ethics consultations were associated with reductions in hospital days and treatment costs among patients who did not survive to hospital discharge. We conclude that consultations resolved conflicts that would have inappropriately prolonged nonbeneficial or unwanted treatments in the ICU instead of focusing on more appropriate comfort care.
2005
Gilmer T; Schneiderman LJ; Teetzel H; Blustein J; Briggs K; Cohn F; Cranford R; Dugan D; Kamatsu G; Young E
Health Affairs
2005
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Journal Article
<a href="http://doi.org/10.1377/hlthaff.24.4.961" target="_blank" rel="noreferrer">10.1377/hlthaff.24.4.961</a>
Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?
Female; Humans; Male; United States; Terminal Care; Adult; Prospective Studies; Aged; Middle Aged; Attitude to Death; Communication; Death; Speech; Stress; adolescent; 80 and over; Empirical Approach; Non-U.S. Gov't; Research Support; bereavement; Caregivers/psychology; Death and Euthanasia; Interviews; Psychological/etiology/psychology; Terminally Ill/psychology
BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and bereavement is stressful and/or helpful. METHODS: Patients from 6 sites in the United States who were estimated to have 6 months or less to live were interviewed in person and reinterviewed 2 to 6 months later. Their caregivers were interviewed separately. At the end of the interviews, patients and caregivers were asked how stressful and how helpful the interview had been. Of 1131 eligible patients, 988 (87.4%) were interviewed, and of 915 eligible caregivers, 893 (97.6%) were interviewed. RESULTS: At the end of the first interview, 1.9% of the patients reported having experienced a great deal of stress, 7.1% some stress, and 88.7% little or no stress from the interview. Among the caregivers, 1.5% reported a great deal of stress, 8.4% some stress, and 89.7% little or no stress. Slightly more stress was reported to have been caused by the reinterview. Overall, 16.9% of the patients reported the initial interview as very helpful, 29.6% as somewhat helpful, and 49.6% as offering little or no help. Among the caregivers, 19.1% reported the initial interview as very helpful, 34.3% as somewhat helpful, and 44.9% as offering little or no help. The reported helpfulness of the second interview was slightly less. Patients experiencing pain (odds ratio [OR], 1.26; 95% confidence interval [CI], 1.02-1.56), more personal meaning in dying (OR, 3.05; 95% CI, 2.02-4.59), and less ease with talking about the end of life (OR, 1.32; 95% CI, 1.09-1.60) were significantly more likely to report stress. Patients who were from an ethnic minority (OR, 1.85; 95% CI, 1.31-2.63), anxious about the end of their life (OR, 1.39; 95% CI 1.16-1.67), more spiritual (OR, 1.30; 95% CI, 1.06-1.61), and serene (OR, 1.25; 95% CI, 1.08-1.45) were significantly more likely to report the interview helpful. There was no relationship between stress and helpfulness. CONCLUSIONS: Terminally ill patients and their caregivers can discuss death, dying, and bereavement in a structured interview with minimal stress and report that the interview was helpful. Institutional review boards should not preemptively restrict surveys with terminally ill patients without reliable evidence that they will be stressful or otherwise harmful.
2004
Emanuel EJ; Fairclough DL; Wolfe P; Emanuel LL
Archives Of Internal Medicine
2004
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Journal Article
<a href="http://doi.org/10.1001/archinte.164.18.1999" target="_blank" rel="noreferrer">10.1001/archinte.164.18.1999</a>
Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death
Female; Humans; Male; Hospital Mortality; Prospective Studies; Aged; Middle Aged; Comorbidity; Resuscitation Orders; Severity of Illness Index; Survival Analysis; Risk Factors; Hospitals; Analysis of Variance; Predictive Value of Tests; Proportional Hazards Models; Teaching; 80 and over; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Intensive Care Units/statistics & numerical data; APACHE; Critical Care/statistics & numerical data; Life Support Care/statistics & numerical data; Paris/epidemiology; Withholding Treatment/statistics & numerical data
OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute medical disorders, other factors may influence the likelihood of DFLSTs. The objectives of this study were to describe the factors and mortality associated with DFLSTs and to evaluate the potential independent impact of DFLSTs on hospital mortality. DESIGN AND SETTING: Prospective multicenter 2-year study in six ICUs in France. PATIENTS: The 1,698 patients admitted to the participating ICUs during the study period, including 295 (17.4%) with DFLSTs. MEASUREMENTS AND RESULTS: The impact of DFLSTs on hospital mortality was evaluated using a model that incorporates changes in daily logistic organ dysfunction scores during the first ICU week. Univariate predictors of death included demographic factors (age, gender), comorbidities, reasons for ICU admission, severity scores at ICU admission, and DFLSTs. In a stepwise Cox model five variables independently predicted mortality: good chronic health status (hazard ratio, 0.479), SAPS II score higher than 39 (2.05), chronic liver disease (1.463), daily logistic organ dysfunction score (1.357 per point), and DFLSTs (1.887). CONCLUSIONS: DFLSTs remain independently associated with death after adjusting on comorbidities and severity at ICU admission and within the first ICU week. This highlights the need for further clarifying the many determinants of DFLSTs and for routinely collecting DFLSTs in studies with survival as the outcome variable of interest.
2003
Azoulay E; Pochard F; Garrouste-Orgeas M; Moreau D; Montesino L; Adrie C; deLassence A; Cohen Y; Timsit JF; Outcomerea Study Group
Intensive Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1007/s00134-003-1989-3" target="_blank" rel="noreferrer">10.1007/s00134-003-1989-3</a>
For purposes of research, palliative care patients should not be considered a vulnerable population
Humans; Guidelines as Topic; Patient Advocacy; Terminology as Topic; Ethics; Medical; Death and Euthanasia; Biomedical and Behavioral Research; Multi-site Ethics; Neoplasms/therapy; Biomedical Research/ethics; Palliative Care/ethics/trends; Prejudice; Vulnerable Populations
2004
Berry SR
Clinical Oncology
2004
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Journal Article
<a href="http://doi.org/10.1016/j.clon.2004.02.003" target="_blank" rel="noreferrer">10.1016/j.clon.2004.02.003</a>
Ethical issues in pediatric critical care neurology
Child; Humans; Pediatrics; Medical Futility; Research; Informed Consent; Ethics; Medical; Professional Patient Relationship; Death and Euthanasia; ICU Decision Making; Biomedical and Behavioral Research; Critical Care/ethics; Health Care and Public Health; Intensive Care Units/ethics; Jurisprudence; Neurology/ethics
Ethical issues in the critical care unit frequently arise in children with neurological problems. These ethical issues frequently challenge our medical management of such cases and can be quite problematic. This article reviews key ethical issues that may arise including informed consent, futility, justice/rationing, clinical research conduct and the severely compromised patient who is in either a permanent vegetative or minimally conscious state.
2004
Shevell M
Seminars In Pediatric Neurology
2004
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Journal Article
<a href="http://doi.org/10.1016/j.spen.2004.03.012" target="_blank" rel="noreferrer">10.1016/j.spen.2004.03.012</a>
A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.
Child; Female; Humans; Male; Data Collection; Questionnaires; Attitude to Death; Pilot Projects; Attitude; Longitudinal Studies; Sweden; Research; Ethics; Empirical Approach; bereavement; Death and Euthanasia; Interviews; Parents/psychology; Biomedical and Behavioral Research
A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was approved. 95% of parents found the pilot study valuable; thus, we were allowed to proceed with the main study, which consisted of 129 questions about the child's care and death and five about the parents' perceptions of the study. 423 (99%) parents found the investigation valuable, 285 (68%) were positively affected, and 123 (28%) were negatively affected (10 [2%] of whom, very much). Although the numerical data cannot be directly translated to ethical conclusions, they can provide guidance for future ethical decisions.
2004
Kreicbergs U; Valdimarsdottir U; Steineck G; Henter JI
Lancet
2004
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Journal Article
<a href="http://doi.org/10.1016/S0140-6736(04)16939-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(04)16939-0</a>
Asking parents unaskable questions
Child; Humans; Data Collection; Interviews as Topic; Questionnaires; Attitude to Death; Sweden; Research; Ethics; bereavement; Death and Euthanasia; Parents/psychology; Biomedical and Behavioral Research
2004
Burnell RH; O'Keefe M
Lancet
2004
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Journal Article
<a href="http://doi.org/10.1016/S0140-6736(04)16950-X" target="_blank" rel="noreferrer">10.1016/S0140-6736(04)16950-X</a>
Ethical challenges of palliative care research
Humans; Research; Ethics; Death and Euthanasia; Palliative Care/ethics; Biomedical and Behavioral Research
2003
Casarett DJ; Knebel A; Helmers K
Journal Of Pain And Symptom Management
2003
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(03)00058-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(03)00058-7</a>
Managing end-of-life care: comparing the experiences of terminally Ill patients in managed care and fee for service
Female; Humans; Male; Physician-Patient Relations; Adult; Aged; Middle Aged; Health Services Accessibility; Outcome Assessment (Health Care); adolescent; 80 and over; Empirical Approach; Non-U.S. Gov't; Professional Patient Relationship; Research Support; Caregivers/psychology; Death and Euthanasia; Comparative Study; Health Services/utilization; Health Care and Public Health; Fee-for-Service Plans; Managed Care Programs; Terminal Care/economics
There have been no published empirical studies comparing the experiences of terminally ill patients in managed care organizations (MCOs) and those in fee for service (FFS). This investigation represents the first empirical study to systematically compare substantive outcomes between populations of terminally ill patients enrolled in MCO and FFS healthcare delivery systems. The investigators interviewed 988 patients whose physicians judged them to be terminally ill and 893 of their caregivers. Outcomes assessments were made in six domains: patient-physician relationship; access to care and use of health care; prevalence of symptoms; and planning for end-of-life care, care needs, and economic burdens. Overall, the two populations of terminally ill patients were found to have comparable outcomes, but several significant differences were present. MCO patients were more likely than their FFS counterparts to use an inconvenient hospital (P =.02), spend more than 10% of their income on medical care (P =.02), and have been bedridden more than 50% of the time during the last 4 weeks of life (P =.03). Caregivers of MCO patients were as likely as the caregivers of FFS patients to report a substantial caregiving burden (P =.59). Despite concerns about the threats of MCOs to the physician-patient relationship, few differences in the quality of the relationship between the two cohorts were found. Finally, terminally ill patients in MCOs did not show better experiences than those in FFS on any outcome measure. Additional research is required to explore how MCOs may improve upon the care available to dying patients.
2002
Slutsman J; Emanuel LL; Fairclough D; Bottorff D; Emanuel EJ
Journal Of The American Geriatrics Society
2002
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Journal Article
<a href="http://doi.org/10.1046/j.1532-5415.2002.50622.x" target="_blank" rel="noreferrer">10.1046/j.1532-5415.2002.50622.x</a>
Opening the black box: physicians' inner responses to patients' requests for physician-assisted death
Humans; Attitude of Health Personnel; Physicians; Oregon; Suicide; Death and Euthanasia; Physician Assisted Dying PAD; Assisted
2004-06
Quill TE
Journal Of Palliative Medicine
2004
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Journal Article
<a href="http://doi.org/10.1089/1096621041349554" target="_blank" rel="noreferrer">10.1089/1096621041349554</a>
Parental perspectives on end-of-life care in the pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Terminal Care; Adult; Withholding Treatment; Prognosis; Questionnaires; Boston; Pain; Quality of Health Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Parents/psychology
OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.
2002
Meyer EC; Burns JP; Griffith JL; Truog RD
Critical Care Medicine
2002
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Journal Article
<a href="http://doi.org/10.1097/00003246-200201000-00032" target="_blank" rel="noreferrer">10.1097/00003246-200201000-00032</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
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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>
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
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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>
A systematic review of physicians' survival predictions in terminally ill cancer patients.
Humans; Terminally Ill; Survival Analysis; Longitudinal Studies; Reproducibility of Results; Analysis of Variance; Regression Analysis; Empirical Approach; Death and Euthanasia; decision making; Charting the Territory; Neoplasms/mortality; Clinical Competence/standards; Physicians/standards
OBJECTIVE: To systematically review the accuracy of physicians' clinical predictions of survival in terminally ill cancer patients. DATA SOURCES: Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand searching. STUDY SELECTION: Studies were included if a physician's temporal clinical prediction of survival (CPS) and the actual survival (AS) for terminally ill cancer patients were available for statistical analysis. Study quality was assessed by using a critical appraisal tool produced by the local health authority. DATA SYNTHESIS: Raw data were pooled and analysed with regression and other multivariate techniques. RESULTS: 17 published studies were identified; 12 met the inclusion criteria, and 8 were evaluable, providing 1563 individual prediction-survival dyads. CPS was generally overoptimistic (median CPS 42 days, median AS 29 days); it was correct to within one week in 25% of cases and overestimated survival by at least four weeks in 27%. The longer the CPS the greater the variability in AS. Although agreement between CPS and AS was poor (weighted kappa 0.36), the two were highly significantly associated after log transformation (Spearman rank correlation 0.60, P < 0.001). Consideration of performance status, symptoms, and use of steroids improved the accuracy of the CPS, although the additional value was small. Heterogeneity of the studies' results precluded a comprehensive meta-analysis. CONCLUSIONS: Although clinicians consistently overestimate survival, their predictions are highly correlated with actual survival; the predictions have discriminatory ability even if they are miscalibrated. Clinicians caring for patients with terminal cancer need to be aware of their tendency to overestimate survival, as it may affect patients' prospects for achieving a good death. Accurate prognostication models incorporating clinical prediction of survival are needed.
2003
Glare P; Virik K; Jones M; Hudson M; Eychmuller S; Simes J; Christakis NA
Bmj (clinical Research Ed.)
2003
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Journal Article
<a href="http://doi.org/10.1136/bmj.327.7408.195" target="_blank" rel="noreferrer">10.1136/bmj.327.7408.195</a>
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
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Journal Article
<a href="http://doi.org/10.1136/jme.2002.001537" target="_blank" rel="noreferrer">10.1136/jme.2002.001537</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
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Journal Article
<a href="http://doi.org/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">10.1186/1472-6939-3-3</a>
Care of the dying adolescent: special considerations
Humans; United States; Adolescent Psychology; Personal Autonomy; Physician-Patient Relations; Death and Euthanasia; decision making; Terminally Ill/legislation & jurisprudence/psychology; Mental Competency/legislation & jurisprudence; Terminal Care/ethics/legislation & jurisprudence/psychology; Adolescent/legislation & jurisprudence; Advance Directives/legislation & jurisprudence; Palliative Care/ethics/legislation & jurisprudence; Parental Consent/ethics/legislation & jurisprudence
More than 3000 adolescents in the United States die annually from the effects of chronic illness. Providing appropriate end-of-life care for these patients is particularly challenging because of several developmental, ethical, and legal considerations relevant to this age group. Developmental issues relate to the ways in which life-threatening illness alters the normal physical and psychological changes associated with adolescence, including attainment of independence, social skills, peer acceptance, and a healthy self-image. Ethical and legal issues arise from the fact that many terminally ill adolescents <18 years of age lack ordinary legal authority to make binding medical decisions (including discontinuation of their treatment), yet they meet functional criteria for having the competence to do so. In such situations, a broad medical, ethical, and legal consensus supports giving decisional authority to the minor patient. Even when full decisional authority is not appropriate, strong moral arguments exist for taking serious account of the young adolescent's treatment preferences. In supporting the dying adolescent, an atmosphere promoting excellent communication and sound decision-making should be fostered as early as possible during preterminal care and maintained thereafter. Once palliative-care strategies become the clinical focus, psychosocial support sensitive to the adolescent's developmental stage must be provided. Using these principles, clinicians can play a crucial role in helping the adolescent, in the face of death, to experience richness of life and the dignity of self-determination.
2004
Freyer DR
Pediatrics
2004
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Journal Article
<a href="http://doi.org/10.1542/peds.113.2.381" target="_blank" rel="noreferrer">10.1542/peds.113.2.381</a>
Pediatric Palliative Care
Child; Humans; Grief; Religion; Death and Euthanasia; Terminally Ill/psychology; hospice care; Pediatrics/methods; Palliative Care/ethics/methods/psychology
Each year in the United States, approximately 50,000 children die and 500,000 children cope with life-threatening conditions. Worldwide these numbers are in the millions.1,2 Such children and their families require comprehensive, compassionate, and developmentally appropriate palliative care. Palliative care is a philosophy of care that evolved from the hospice philosophy to meet the gaps in care for seriously ill and dying patients. The aims of pediatric palliative care should best intersect with the aims of curing and healing, and this approach should be instituted when diagnosis, intervention, and treatment are not limited to a disease process, but rather become . . .
2004-04
Himelstein BP; Hilden JM; Boldt AM; Weissman DE
New England Journal Of Medicine
2004
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Journal Article
<a href="http://doi.org/10.1056/NEJMra030334" target="_blank" rel="noreferrer">10.1056/NEJMra030334</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>
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>
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
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Journal Article
<a href="http://doi.org/10.2307/3560572" target="_blank" rel="noreferrer">10.2307/3560572</a>
Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family
Humans; Consensus; Withholding Treatment; Communication; Life Support Care; Physician's Role; Nurse's Role; Professional-Patient Relations; Disclosure; Empirical Approach; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Interviews; decision making; Family/psychology; Practice Guidelines
BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision making about withdrawing life-sustaining treatments, we investigated which physician and nurse behaviors families find supportive and which behaviors increase the family's burden. METHODS: We conducted intensive 1- to 2-hour-long individual interviews using a semistructured interview protocol with 32 family members of patients without advance directives whose deaths followed a stay in the intensive care unit and withdrawal of treatment. We analyzed more than 700 pages of verbatim interview data using content analysis techniques and achieved more than 90% interrater agreement on data codes. RESULTS: Themes emerged as families identified selected physician and nursing behaviors as helpful: encouraging advanced planning, timely communication, clarification of families' roles, facilitating family consensus, and accommodating family's grief. Behaviors that made families feel excluded or increased their burden included postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision making on one person, withdrawing from the family, and defining death as a failure. CONCLUSIONS: Study findings provide an increased understanding of the unmet needs of families and serve to guide physicians and nurses in reducing actions that increase families' burdens as they participate in treatment withdrawal decisions.
1995
Tilden VP; Tolle SW; Garland MJ; Nelson CA
Archives Of Internal Medicine
1995
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Journal Article
<a href="http://doi.org/10.1001/archinte.1995.00430060097012" target="_blank" rel="noreferrer">10.1001/archinte.1995.00430060097012</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
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Journal Article
<a href="http://doi.org/10.1001/archpedi.1994.02170010089021" target="_blank" rel="noreferrer">10.1001/archpedi.1994.02170010089021</a>
Comfort care for terminally ill patients. The appropriate use of nutrition and hydration
Female; Humans; Male; Withholding Treatment; Prospective Studies; Aged; Middle Aged; New York; Risk Assessment; Fluid Therapy; Parenteral Nutrition; quality of life; 80 and over; Empirical Approach; Death and Euthanasia; Hunger; Nursing Homes/standards; Nutrition; NY); Palliative Care/psychology; Psychological; St. John's Home (Rochester; Stress; Terminal Care/methods/psychology/standards; Thirst; Xerostomia/therapy
OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. DESIGN--Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. SETTING--Ten-bed comfort care unit in a 471-bed long-term care facility. PARTICIPANTS--Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. MAIN OUTCOME MEASURES--Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. RESULTS--Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. CONCLUSIONS--In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.
1994
McCann RM; Hall WJ; Groth-Juncker A
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.1994.03520160047041" target="_blank" rel="noreferrer">10.1001/jama.1994.03520160047041</a>
Limitations and withdrawals of medical intervention in pediatric critical care
Child; Female; Humans; Male; Survival Rate; United States; Intensive Care Units; Withholding Treatment; Hospital Mortality; Resuscitation Orders; Patient Selection; Analysis of Variance; Outcome and Process Assessment (Health Care); Preschool; Empirical Approach; Death and Euthanasia; infant; ICU Decision Making; Intervention; Interventions; Life Support Care/utilization; Pediatric/standards/statistics & numerical data
OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and withdrawal of care. DESIGN--Consecutive patients admitted between December 1989 and January 1992. SETTING--A total of 16 PICUs randomly selected to represent variability in size, teaching status, and presence or absence of a pediatric intensivist and unit coordination. MAIN OUTCOME MEASURES--Profiles of children undergoing restrictions of medical interventions including the influence of chronic disease, the justifications for restrictions, and description of implementation practices. PATIENTS--All pediatric admissions undergoing restrictions (n = 119) drawn from 5415 consecutive PICU admissions. RESULTS--A total of 94 (79%) of the restriction patients died during the PICU course, representing 38% of all deaths. A total of 73 restrictions (61%) resulted from acute disease, most involving the central nervous system or respiratory system. Restrictions were evenly divided between DNR (39%), additional limitations of medical intervention beyond DNR (27%), and withdrawals of medical intervention (34%). Survival decreased with increasing levels of restriction from 35% of DNR patients to 9% of patients with additional limitations and 2% of withdrawal patients. Imminent death was cited as the justification for restrictions in 70% of cases, no relational potential was cited in 22%, and excessive burden was cited in 8%. CONCLUSIONS--Restrictions of medical intervention were used in all PICUs surveyed. Although severe chronic disease was common among restriction patients, acute disease was the predominant event precipitating placement of restrictions. Imminent death, not quality of life or excessive burden, was the most common justification.
1994
Levetown M; Pollack MM; Cuerdon TT; Ruttimann UE; Glover JJ
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.272.16.1271" target="_blank" rel="noreferrer">10.1001/jama.272.16.1271</a>
Learning to care for people with chronic illness facing the end of life
United States; Health Services Accessibility; Health Services Research; Quality of Health Care; Professional Patient Relationship; Death and Euthanasia; Palliative Care/economics/standards/trends; Policy Making; RDF Project; Terminal Care/economics/standards/trends
2000
Lynn J
Jama
2000
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Journal Article
<a href="http://doi.org/10.1001/jama.284.19.2508" target="_blank" rel="noreferrer">10.1001/jama.284.19.2508</a>
Terminal nutrition: framing the debate for the withdrawal of nutritional support in terminally ill patients
Humans; United States; Medical Futility; Ethics; Medical; Death and Euthanasia; Enteral Nutrition/adverse effects; Fasting/physiology/psychology; Parenteral Nutrition/adverse effects; Terminal Care/methods/standards
Nutrition and hydration have long been considered to be life-sustaining therapies that are associated with comfort and relief of suffering. This belief is largely based on our own experiences with the sensations of thirst and hunger, which have led physicians to question whether withdrawing or withholding nutritional support from a dying patient can be morally or ethically justified. When considered in light of the available evidence, the underlying premise of this question must be reevaluated. The evidence suggests an alternative formulation, namely, that unrequested nutritional support provided by either the enteral or parenteral route to a terminally ill patient may be both medically and ethically indefensible because it may increase suffering without improving outcome.
2000
Winter SM
The American Journal Of Medicine
2000
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Journal Article
<a href="http://doi.org/10.1016/s0002-9343(00)00609-4" target="_blank" rel="noreferrer">10.1016/s0002-9343(00)00609-4</a>
Euthanasia in Europe
Humans; Netherlands; Paternalism; Belgium; Empirical Approach; Death and Euthanasia; Psychological; Stress; Euthanasia/statistics & numerical data
2001
Bernheim JL
Lancet
2001
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Journal Article
<a href="http://doi.org/10.1016/s0140-6736(00)04244-6" target="_blank" rel="noreferrer">10.1016/s0140-6736(00)04244-6</a>
Are special ethical guidelines needed for palliative care research?
Humans; Guidelines as Topic; Research; Ethics; Medical; Death and Euthanasia; Palliative Care/standards; Biomedical and Behavioral Research; Multi-site Ethics
Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in research may make many providers uncomfortable. In short, there seems to be something ethically unique, and uniquely challenging, about palliative care research. This paper considers 4 arguments for this unique status: 1) dying patients are especially vulnerable; 2) adequate informed consent may be difficult to obtain; 3) balancing research and clinical roles is particularly difficult; and 4) the risks and benefits of palliative research are difficult to assess. We conclude that the first three of these arguments are weak, and that special guidelines are not needed. We suggest, however, that the fourth argument may have some merit, and should be the focus of discussion among investigators, providers, and patients.
2000
Casarett DJ; Karlawish J
Journal Of Pain And Symptom Management
2000
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(00)00164-0" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00164-0</a>
The importance of 'knowing the patient': community nurses' constructions of quality in providing palliative care
Humans; England; Questionnaires; Quality of Health Care; Nurse-Patient Relations; Community Health Nursing; Empirical Approach; Death and Euthanasia; Palliative Care/standards; Health care reform
This paper reports findings from a study conducted in one community health care trust where 62 members of the district nursing team (grades B-H) were interviewed. An adaptation of the critical incident technique was used to determine factors which contributed or detracted from high quality care for a number of key areas including palliative care. The centrality of knowing the patient and his/her family emerged as an essential antecedent to the provision of high quality palliative care. Factors enabling the formation of positive relationships were given prominence in descriptions of ideal care. Strategies used to achieve this included establishing early contact with the patient and family, ensuring continuity of care, spending time with the patient and providing more than the physical aspects of care. The characteristics described by the community nurses are similar to those advocated in 'new nursing' which identifies the uniqueness of patient needs, and where the nurse-patient relationship is objectified as the vehicle through which therapeutic nursing can be delivered. The link with 'new nursing' emerges at an interesting time for community nurses. The past decade has seen many changes in the way that community nursing services are configured. The work of the district nursing service has been redefined, making the ideals of new nursing, for example holism, less achievable than they were a decade ago. This study reiterates the view that palliative care is one aspect of district nursing work that is universally valued as it lends itself to being an exemplar of excellence in terms of the potential for realizing the ideals of nursing practice. This is of increasing importance in the context of changes that militate against this ideal.
2000
Luker KA; Austin L; Caress A; Hallett CE
Journal Of Advanced Nursing
2000
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Journal Article
<a href="http://doi.org/10.1046/j.1365-2648.2000.01364.x" target="_blank" rel="noreferrer">10.1046/j.1365-2648.2000.01364.x</a>
Guidelines for an acceptable euthanasia procedure
Female; Humans; Adult; Practice Guidelines as Topic; Aged; Middle Aged; Netherlands; Physician's Role; Right to Die; Suicide; Death and Euthanasia; Assisted/psychology; Euthanasia/legislation & jurisprudence/psychology; Female/psychology/therapy; Genital Neoplasms
The Netherlands is one of the very few countries that has guidelines for the practice of euthanasia. Each year there are about 9700 explicit requests for euthanasia or physician-assisted suicide (EAS), of which approximately 3600 patients are agreed upon in The Netherlands. Other countries have criticized the Dutch policy concerning EAS. First of all, it has been suggested that palliative care in The Netherlands is not adequate and that euthanasia is often requested by patients with depression. Additionally, part of the criticism is based on the regulation of the euthanasia procedure in The Netherlands. This chapter describes the guidelines for the procedure for euthanasia in The Netherlands, and focuses on some of the practical problems and issues of euthanasia. Also, the current situation concerning euthanasia and physician-assisted suicide in The Netherlands is summarized and described.
2001
Swarte NB; Heintz AP
Best Practice & Research: Clinical Obstetrics & Gynaecology
2001
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Journal Article
<a href="http://doi.org/10.1053/beog.2000.0171" target="_blank" rel="noreferrer">10.1053/beog.2000.0171</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
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Journal Article
<a href="http://doi.org/10.1056/nejm200001203420312" target="_blank" rel="noreferrer">10.1056/nejm200001203420312</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
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Journal Article
<a href="http://doi.org/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">10.1056/NEJM200002243420805</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
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Journal Article
<a href="http://doi.org/10.1089/jpm.1998.1.315" target="_blank" rel="noreferrer">10.1089/jpm.1998.1.315</a>
End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines
Female; Humans; Male; Terminal Care; Practice Guidelines as Topic; Professional-Family Relations; adolescent; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; social support; Neoplasms/nursing/psychology/therapy
Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations from professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs include a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Settings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and that setting plus a children's hospital in Australia and one in Hong Kong (Study 3). Study samples included 39 guardians and 21 healthcare providers (Study 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 parents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all interview data. Four nurses independently coded each interview; interrater reliability per code ranged from 68% to 100% across studies. The most frequently reported influencing factors were "information on the health and disease status of the patient," "all curative options having been attempted," "trusting the healthcare team," and "feeling support from the healthcare provider." The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life decision making in a structured manner that can be formally evaluated and individualized to meet patient and family needs.
2001
Hinds PS; Oakes L; Furman W; Quargnenti A; Olson MS; Foppiano P; Srivastava DK
Cancer Nursing
2001
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Journal Article
<a href="http://doi.org/10.1097/00002820-200104000-00007" target="_blank" rel="noreferrer">10.1097/00002820-200104000-00007</a>
Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit
Child; Cross-Sectional Studies; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Prognosis; Questionnaires; Euthanasia; Life Support Care; Activities of Daily Living; Linear Models; Nursing Staff; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Family/psychology; ICU Decision Making; Intervention; Interventions; Passive; Hospital/psychology
OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU. SUBJECTS: All physicians and nurses caring for oncology or cardiology ICU patients. INTERVENTIONS: Seven patient characteristics were systematically presented in 16 theoretical case scenarios. MEASUREMENTS AND MAIN RESULTS: Individual linear regression models were constructed for each participant by calculating the importance caregivers placed on seven patient characteristics when deciding about starting intravenous vasopressors, performing chest compressions, and withdrawing life support. We compared the numerical and descriptive (very low, low, moderate, high) probability of survival. We surveyed 86 caregivers and 56 (65%) responded. The most important factors influencing decisions were family preferences (76% of decisions), followed by probability of survival (50%), and functional status (47%). There was marked variability among respondents in 38 (79%)/48 of the questions; 20% to 50% of caregivers chose opposing directions of patient management when they were asked to indicate the likelihood that they would perform a specific life-support intervention. The same term was never used by all respondents to describe the probability of survival for a scenario. CONCLUSION: Critically ill children and their families could face markedly different attitudes about the restriction of life-support interventions, depending on which nurses and physicians are involved in their care.
1997
Randolph AG; Zollo MB; Wigton RS; Yeh TS
Critical Care Medicine
1997
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Journal Article
<a href="http://doi.org/10.1097/00003246-199703000-00011" target="_blank" rel="noreferrer">10.1097/00003246-199703000-00011</a>
Withdrawing mechanical ventilation in children
Child; Humans; Respiration; Death and Euthanasia; ICU Decision Making; Artificial; Ventilator Weaning
2000
Frader JE
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200008000-00093" target="_blank" rel="noreferrer">10.1097/00003246-200008000-00093</a>