Issues of patient consent: a study of paediatric high-dependency care
Child; Humans; Intensive Care Units; Great Britain; Professional Patient Relationship; Ethics Committees; ICU Decision Making; Biomedical and Behavioral Research; Pediatric/legislation & jurisprudence; Access to Information/legislation & jurisprudence; Child Advocacy/legislation & jurisprudence; Computer Security/legislation & jurisprudence; Confidentiality/legislation & jurisprudence; Data Collection/legislation & jurisprudence; Health Services Research/legislation & jurisprudence; Informed Consent/legislation & jurisprudence; Nursing Research/legislation & jurisprudence; Patient Identification Systems/legislation & jurisprudence; Patient Rights/legislation & jurisprudence; Presumed Consent/legislation & jurisprudence; Research/legislation & jurisprudence
This article reports on the issues relating to obtaining informed, signed consent for a study of paediatric high-dependency care and provides practical guidance on confidentiality for health service researchers. Consent and confidentiality are not new concepts but recent changes to the legislation and guidance offered from nursing and medical regulatory bodies have caused concerns and confusion for researchers with respect to both issues. Balancing health service research and the development of services against the requirements of patients for confidentiality is essential yet challenging. This was a time consuming, costly exercise. Resource implications may ultimately mean that studies which are of benefit to patients in relation to the delivery of their care may not be undertaken. Health professionals need to be continually updated and made aware of the legislation and confidentiality requirements for health service research involving the collection of patient-identifiable details.
2005
Rushforth K; McKinney PA
British Journal Of Nursing
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/10.12968/bjon.2005.14.9.18079" target="_blank" rel="noreferrer">10.12968/bjon.2005.14.9.18079</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
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/j.spen.2004.03.012" target="_blank" rel="noreferrer">10.1016/j.spen.2004.03.012</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
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/10.1046/j.1532-5415.2002.50622.x" target="_blank" rel="noreferrer">10.1046/j.1532-5415.2002.50622.x</a>
Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents
Child; Female; Humans; Male; Physician-Patient Relations; Critical Illness; Professional-Family Relations; Communication; adolescent; Empirical Approach; Professional Patient Relationship; Chronic disease; Parent caregivers; Neoplasms/psychology/therapy
OBJECTIVES: To examine young people's and parents' accounts of communication about cancer in childhood. DESIGN: Semistructured interviews analysed using the constant comparative method. SETTING: Paediatric oncology unit. PARTICIPANTS: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour. RESULTS: Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors. CONCLUSIONS: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.
2003
Young B; Dixon-Woods M; Windridge KC; Heney D
Bmj (clinical Research Ed.)
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/10.1136/bmj.326.7384.305" target="_blank" rel="noreferrer">10.1136/bmj.326.7384.305</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
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/jme.2002.001537" target="_blank" rel="noreferrer">10.1136/jme.2002.001537</a>
The consultant and the patient-physician relationship. A trilateral deliberative model
Humans; United States; Physician-Patient Relations; Family; Communication; Physicians; Physician's Role; Interprofessional Relations; Continuity of Patient Care; Primary Health Care; Professional Patient Relationship; Psychological; Analytical Approach; Models; referral and consultation
1994
Emanuel LL; Richter J
Archives Of Internal 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/archinte.1994.00420160016003" target="_blank" rel="noreferrer">10.1001/archinte.1994.00420160016003</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
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/archinte.1995.00430060097012" target="_blank" rel="noreferrer">10.1001/archinte.1995.00430060097012</a>
Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial
Female; Humans; Male; Physician-Patient Relations; Truth Disclosure; California; Analysis of Variance; Disclosure; Regression Analysis; adolescent; Empirical Approach; Professional Patient Relationship; Adolescent Transitions; Adolescent Health Services/utilization; Confidentiality
CONTEXT: Adolescents' concerns about privacy in clinical settings decrease their willingness to seek health care for sensitive problems and may inhibit their communication with physicians. OBJECTIVE: To investigate the influence of physicians' assurances of confidentiality on adolescents' willingness to disclose information and seek future health care. DESIGN: Randomized controlled trial. SETTING: Three suburban public high schools in California. PARTICIPANTS: The 562 participating adolescents represented 92% of students in mandatory classes. INTERVENTION: After random assignment to 1 of 3 groups, the adolescents listened to a standardized audiotape depiction of an office visit during which they heard a physician who assured unconditional confidentiality, a physician who assured conditional confidentiality, or a physician who did not mention confidentiality. MAIN OUTCOME MEASURES: Adolescents' willingness to disclose general information, willingness to disclose information about sensitive topics, intended honesty, and likelihood of return visits to the physician depicted in the scenario were assessed by anonymous written questionnaire. RESULTS: Assurances of confidentiality increased the number of adolescents willing to disclose sensitive information about sexuality, substance use, and mental health from 39% (68/175) to 46.5% (178/383) (beta=.10, P=.02) and increased the number willing to seek future health care from 53% (93/175) to 67% (259/386) (beta=.17, P
1997
Ford CA; Millstein SG; Halpern-Felsher BL; Irwin CE
Jama
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/10.1001/jama.1997.03550120089044" target="_blank" rel="noreferrer">10.1001/jama.1997.03550120089044</a>
Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students
Female; Humans; Male; Questionnaires; Massachusetts; Health Behavior; Emergency Service; Practice; adolescent; Hospital/utilization; Empirical Approach; Professional Patient Relationship; Attitudes; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Health Knowledge; Adolescent Health Services/utilization; Confidentiality; Community Health Centers/utilization; Physicians' Offices/utilization; School Health Services/utilization; Students
OBJECTIVE--To assess adolescent knowledge, perceptions, and attitudes about health care confidentiality. DESIGN--Anonymous self-report survey with 64 items addressing confidentiality issues in health care. SETTING--Rural, suburban, and urban high schools in central Massachusetts. PARTICIPANTS--Students in ninth through 12th grades from three schools. RESULTS--A total of 1295 students (87%) completed the survey: 58% had health concerns that they wished to keep private from their parents, and 69% from friends and classmates; 25% reported that they would forgo health care in some situations if their parents might find out. There were differences in response by gender, race, and school. About one third were aware of a right to confidentiality for specific health issues. Of those with a regular source of care, 86% would go to their regular physician for a physical illness, while only 57% would go there for questions about pregnancy, the acquired immunodeficiency syndrome, or substance abuse that they wished to keep private. Sixty-eight percent had concerns about the privacy of a school health center. CONCLUSIONS--A majority of adolescents have concerns they wish to keep confidential and a striking percentage report they would not seek health services because of these concerns. Interventions to address confidentiality issues are thus crucial to effective adolescent health care.
1993
Cheng TL; Savageau JA; Sattler AL; DeWitt TG
Jama
1993
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/jama.269.11.1404" target="_blank" rel="noreferrer">10.1001/jama.269.11.1404</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
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/jama.284.19.2508" target="_blank" rel="noreferrer">10.1001/jama.284.19.2508</a>
Ethical issues in the pediatric intensive care unit
Child; Humans; United States; Parental Consent; Pediatrics; Withholding Treatment; Social Values; Intensive Care; Minors; Tissue and Organ Procurement; Ethics; Uncertainty; Medical; adolescent; Preschool; Professional Patient Relationship; infant; ICU Decision Making; Critical Illness/psychology; Judicial Role; Value of Life
Advanced technology and better scientific understanding of mechanisms of disease now permit intensive care personnel to extend life beyond what some patients and families consider reasonable, leading, in part, to the "patients' rights" movement and the articulation of legal and moral guidelines for foregoing life support. In the case of pediatrics, commentaries on a few of the topics that have arisen most frequently or have provided the greatest challenge in the authors' experience are provided.
1994
Frader JE; Thompson A
Pediatric Clinics Of North America
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/10.1016/s0031-3955(16)38879-4" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)38879-4</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>
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
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/10.1097/00002820-200104000-00007" 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
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/10.1097/00003246-199703000-00011" target="_blank" rel="noreferrer">10.1097/00003246-199703000-00011</a>
Forgoing life-sustaining treatments: how the decision is made in French pediatric intensive care units
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Prospective Studies; Professional-Family Relations; Life Support Care; Pediatric; adolescent; Preschool; Empirical Approach; Professional Patient Relationship; patient care team; Death and Euthanasia; decision making; infant; Practice Guidelines; Newborn; ICU Decision Making; France
OBJECTIVES: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed a prospective study to help the experts. This study documents how children die in French PICUs and how the decision to limit life support is made. DESIGN: A multicenter, prospective, cross-sectional study. SETTING: Thirty-three multidisciplinary PICUs in university hospitals. PATIENTS: All consecutive deaths were recorded over a 4-month period. Children who died after a medical decision to forgo life-sustaining treatment were included in group 1 and children who died from other causes were included in group 1. MAIN RESULTS: A total of 264 consecutive children died, 40.1% from group 1 and 59.8% from group 2. Patients of both groups were primarily admitted for acute respiratory failure (group 1, 50.8%; group 2, 52.6%). Neurologic emergencies were more frequent in patients in group 1, whereas patients with cardiovascular failures were more frequent in group 2. When there was a question of whether to pursue life-sustaining treatment, the parents' opinions were recorded in 72.1% of cases. A specific meeting was called to make this decision in 80.1% of cases. This meeting involved the medical staff in all cases. Parents were aware of the meeting in 10.7% of cases. The conclusion of the meeting was reported to the parents in 18.7% of cases and documented in the patient's medical record in 16% of cases. Experts who were not members of the PICU staff were invited to give their opinion in 62.2% of cases. CONCLUSIONS: The decision to forgo life-sustaining treatment is frequently made for children dying in French PICUs. Guidelines must be available to help the medical staff reach this decision. Knowledge of the decision-making process in French PICUs provides the experts with information needed to elaborate such recommendations.
2001
Devictor DJ; Nguyen DT; Groupe Francophone de Reanimationet d'Urgences Pediatriques
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/10.1097/00003246-200107000-00010" target="_blank" rel="noreferrer">10.1097/00003246-200107000-00010</a>
The future of the doctor-payer-patient relationship
Humans; Physician-Patient Relations; Philosophy; Ethics; Forecasting; Medical; Non-U.S. Gov't; Professional Patient Relationship; Research Support; Chronic Disease/therapy; Health Care and Public Health; Social Change; Managed Care Programs; Acute Disease/therapy; Commodification
1998
Cassell EJ
Journal Of The American Geriatrics Society
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/10.1111/j.1532-5415.1998.tb01046.x" target="_blank" rel="noreferrer">10.1111/j.1532-5415.1998.tb01046.x</a>
Issues in Islamic biomedical ethics: a primer for the pediatrician
Child; Female; Humans; Male; Adult; Attitude to Death; Religion and Medicine; Cultural Characteristics; Bioethics; adolescent; Professional Patient Relationship; United States/epidemiology; Jurisprudence; Parenting/psychology; Bioethics and Professional Ethics; Child Development/classification; Child Rearing; Human Rights/standards; Islam/psychology; Religious Approach
The United States is becoming increasingly pluralistic. Pediatricians must become familiar with the factors that affect the emotional, physical, and spiritual health of their patients that are outside the kin of the traditionally dominant value system. Although many articles have addressed the cultural and ethnic factors, very few have considered the impact of religion. Islam, as the largest and fastest-growing religion in the world, has adherent throughout the world, including the United States, with 50% of US Muslims being indigenous converts. Islam presents a complete moral, ethical, and medical framework that, while it sometimes concurs, at times diverges or even conflicts with the US secular ethical framework. This article introduces the pediatrician to the Islamic principles of ethics within the field of pediatric care and child-rearing. It demonstrates how these principles may impact outpatient and inpatient care. Special attention is also given to adolescent and end-of-life issues.
2001
Hedayat KM; Pirzadeh R
Pediatrics
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/10.1542/peds.108.4.965" target="_blank" rel="noreferrer">10.1542/peds.108.4.965</a>
Recognizing suffering
Humans; Social Values; Esthetics; Personhood; Professional Patient Relationship; Psychological; Stress; Patients/psychology; Disease/psychology; Virtues
Implies that the profession of medicine must pursue the relief of suffering. Definition of suffering; Wholeness, person, and self-identity; Purpose; Knowing the suffering of others; Knowledge of others as individuals; Aesthetics.
1991
Cassell EJ
The Hastings Center Report
1991
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/10.2307/3563319" target="_blank" rel="noreferrer">10.2307/3563319</a>
Clinical incoherence about persons: the problem of the persistent vegetative state
Humans; Attitude of Health Personnel; Social Values; Attitude to Death; Tissue and Organ Procurement; Uncertainty; Professional Patient Relationship; Death and Euthanasia; decision making; Physicians/psychology; Persistent Vegetative State
1996
Cassell EJ
Annals Of Internal Medicine
1996
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/10.7326/0003-4819-125-2-199607150-00014" target="_blank" rel="noreferrer">10.7326/0003-4819-125-2-199607150-00014</a>
Diagnosing suffering: a perspective
Humans; Physician-Patient Relations; Clinical Competence; Professional Patient Relationship; Death and Euthanasia; Terminally Ill/psychology; Psychological; Stress; Pain/diagnosis/therapy
The alleviation of suffering is crucial in all of medicine, especially in the care of the dying. Suffering cannot be treated unless it is recognized and diagnosed. Suffering involves some symptom or process that threatens the patient because of fear, the meaning of the symptom, and concerns about the future. The meanings and the fear are personal and individual, so that even if two patients have the same symptoms, their suffering would be different. The complex techniques and methods that physicians usually use to make a diagnosis, however, are aimed at the body rather than the person. The diagnosis of suffering is therefore often missed, even in severe illness and even when it stares physicians in the face. A high index of suspicion must be maintained in the presence of serious disease, and patients must be directly questioned. Concerns over the discomfort of listening to patients' severe distress are usually more than offset by the gratification that follows the intervention. Often, questioning and attentive listening, which take little time, are in themselves ameliorative. The information on which the assessment of suffering is based is subjective; this may pose difficulties for physicians, who tend to value objective findings more highly and see a conflict between the two kinds of information. Recent advances in understanding how physicians increase the utility of information and make inferences allow one to reliably use the subjective information on which the diagnosis and treatment of suffering depend. Knowing patients as individual persons well enough to understand the origin of their suffering and ultimately its best treatment requires methods of empathic attentiveness and nondiscursive thinking that can be learned and taught. The relief of suffering depends on physicians acquiring these skills.
1999
Cassell EJ
Annals Of Internal Medicine
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/10.7326/0003-4819-131-7-199910050-00009" target="_blank" rel="noreferrer">10.7326/0003-4819-131-7-199910050-00009</a>
Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.
Humans; Male; United States; Consensus; Treatment Refusal; Aged; Intention; Fluid Therapy; Morals; Food; Suicide; Non-U.S. Gov't; Professional Patient Relationship; Research Support; patient care team; Death and Euthanasia; Psychological; Stress; Ethics; Assisted; Hypnotics and Sedatives/administration & dosage; Double Effect; Palliative Care/legislation & jurisprudence/methods
When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.
2000
Quill TE; Byock IR; Panel ACP-ASIMEnd-of-Life Care Consensus
Annals Of Internal 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/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">10.7326/0003-4819-132-5-200003070-00012</a>
Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care
Child; Female; Humans; Male; Palliative Care; Terminally Ill; Adult; Data Collection; Prognosis; Attitude to Death; Regression Analysis; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Parents/psychology; Oncology at EOL; Physicians/psychology; Neoplasms/mortality/therapy
Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.Objectives To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.Design, Setting, and Participants Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.Main Outcome Measure Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.Results Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P = .04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).Conclusion Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.
2000-11
Wolfe J; Klar N; Grier HE; et al
Jama
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/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">10.1001/jama.284.19.2469</a>
Symptoms and Suffering at the End of Life in Children with Cancer
Child; Humans; Terminal Care; Health Care Surveys; Parents; Withholding Treatment; Logistic Models; Questionnaires; Physicians; Boston; Longitudinal Studies; Quality of Health Care; quality of life; Empirical Approach; Non-U.S. Gov't; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Psychological; Stress; Clodronate; Neoplasms/complications/therapy; Oncology at EOL; Pain/etiology/therapy; Anorexia/etiology/therapy; home care services; Children's Hospital (Boston); Constipation/etiology/therapy; Dana-Farber Cancer Institute (Boston); Diarrhea/etiology/therapy; Dyspnea/etiology/therapy; Fatigue/etiology/therapy; Palliative Care/standards/statistics & numerical data
Cancer is the leading cause of nonaccidental death in childhood.1 There has, however, been little evaluation of the overall experience at the end of life of children who are dying of cancer or of their symptoms other than pain.2,3 A number of studies have demonstrated that among adults, the quality of care at the end of life is suboptimal.4–8 For example, one study of elderly patients found that there was considerable suffering at the end of life, with up to 25 percent of patients experiencing moderate-to-severe pain in the last three days of life.7 It is not known . . .
2000-02
Wolfe J; Grier Holcombe E; Klar Neil; Levin SB; Ellenbogen JM; Salem-Schatz S; Emanuel EJ; Weeks Jane C
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/NEJM200002033420506" target="_blank" rel="noreferrer">10.1056/NEJM200002033420506</a>
Effects of offering advance directives on medical treatments and costs
Humans; Personal Autonomy; Withholding Treatment; Prospective Studies; California; Hospitals; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; DNAR Outcomes; Resource Allocation; Health Care and Public Health; Veterans; University; Advance Directives/ec [Economics]; Advance Directives/psychology; California Durable Power of Attorney for Health Care; Control Groups; Cost Control/methods; Life Support Care/utilization; Life Support Care/economics; Patient Satisfaction/statistics & numerical data; Risk Assessment
Objective: To examine the effects of advance directives on medical treatments and on patient satisfaction and well-being and to determine whether the enhancement of patient autonomy through advance directives provides a more ethically feasible approach to cost control than does the imposition of limits through rationing.; Design: Randomized, controlled trial.; Setting: University and Veterans Affairs medical center.; Patients: Two hundred and four patients with life-threatening illnesses, 100 of whom died after enrollment in the study.; Intervention: Patients randomly assigned to the experimental group were offered the California Durable Power of Attorney (a typical proxy-instruction directive), and patients assigned to the control group were not offered the advance directive. Hospital admissions were monitored to assure that a summary of the document was present in the active medical record at each hospitalization.; Measurements: Cognitive function, patient satisfaction, psychological well-being, health locus of control, sense of coherence, health-related quality of life, receipt of medical treatments, and medical treatment charges.; Results: No significant differences were found between advance-directive and control groups regarding psychosocial variables, health outcome variables, and medical treatments or charges. Patients offered an advance directive had an average hospital stay of 40.8 days (95% CI, 32.2 to 49.4 days), compared with an average of 33.1 days (95% CI, 26.0 to 40.2 days) for controls. Patients offered an advance directive were charged an average of $19,502 (95% CI, $13,030 to $25,974) for medical treatments in the last month of life compared with $19,700 (95% CI, $13,704 to $25,696) for controls.; Conclusions: Despite claims that public demand for longer life accounts for rising medical costs, most surveys suggest that patients are calling for less, not more, of the expensive, high-technology treatment often used in terminal phases of illness. Executing the California Durable Power of Attorney for Health Care and having a summary copy placed in the patient's medical record had no significant positive or negative effect on a patient's well-being, health status, medical treatments, or medical treatment charges.;
1992-10
Schneiderman LJ; Kronick R; Kaplan RM; Anderson JP; Langer RD
Annals Of Internal Medicine
1992
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