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Medical ethics education: a professor of religion investigates.

A study was carried out in a large teaching hospital to ascertain the current view of members of ten ward teams in regard to certain problems in the field of medical ethics. The investigator accompanied each team on their morning rounds and sat in on their discussions. At the end of each week he interviewed the faculty member, residents, intern, and medical students who comprised that team. Responses to these fifty open-ended interviews were grouped into categories that seemed natural to the data. These were tabulated and commented upon. The conclusions drawn were that there is an urgent need for ethical discourse in medical education, but that there are certain built-in difficulties in bringing this about in a significant way. Focus of attention upon critical incidents that come up in the normal cycle of ward rounds appeared to be the optimum approach to take.

Bioethical Issues↗

Ethical considerations surrounding first time procedures: a study and analysis of patient attitudes toward spinal taps by students.

A patient is not always told when a student is performing a procedure for the first time. Withholding this information is a form of deception. It is justified on paternalistic grounds (it is in the patient's interest not to know), or on public policy grounds (given the choice, patients would refuse, thus compromising the training of future physicians). Using the spinal tap procedure (lumbar puncture) as a paradigm, 173 patients were surveyed to determine how they felt about first time procedures by medical students, interns, and residents. The patients indicated that they would be willing to be the subject for a student's (52%), intern's (62%), or resident's (66%) first spinal tap. This paper reassesses the ethics of consent for first time procedures based on responses to this survey.

Adult↗

Guidelines for disclosing genetic information to family members: from development to use.

This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.

Canada↗

What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing.

Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.

Adaptation, Psychological↗

Disclosure of serostatus by HIV infected youth: the experience of the REACH study. Reaching for Excellence in Adolescent Care and Health.

PURPOSE: To describe disclosure of HIV serostatus by infected youth to parents and sexual partners and to examine the association of disclosure with subject characteristics. METHODS: Baseline data on 317 HIV infected adolescents in national 15 site study were examined. Data sources included direct and computer-assisted interview, laboratory studies, and chart reviews. Examination of parental disclosure was restricted to subjects without parental permission requirements. Concordance in parental disclosure/support used McNemar's test. Associations between disclosure to parent(s) and subject characteristics were examined using logistic regression analysis. Repeated measure analysis was used for sexual partner disclosure. RESULTS: Subjects of both genders more often disclosed their HIV infection status to mothers than to their fathers (77% vs. 47%, p < .001). With disclosure, perceived support from either parent was high. In multivariate analyses, factors associated with maternal disclosure were length of time since diagnosis (OR = 1.43; 95% CI: 1.06-1.92), and Hispanic ethnicity (OR = .37; 95% CI: .15-.95). No factors were significantly associated with paternal disclosure in multivariate analysis, although length of time since diagnosis showed a trend (OR = 1.31; 95% CI: 1.00-1.74). Factors associated with disclosure to sexual partners were partner's HIV+ status (OR = 2.09; 95% CI: 1.11-3.93) and "main partner" status (OR = 3.17; 95% CI: 1.84-5.46). CONCLUSIONS: Although subjects were more likely to reveal their status to their mothers, parental support was perceived as high after disclosure to either parent. Since "time since diagnosis" was associated with parental disclosure, support systems are necessary for youth until such a disclosure can occur.

Adolescent↗

Disclosure of developmental disability: a study of paediatricians' practices.

OBJECTIVE: To investigate paediatricians' practices in disclosure of disability and the influences on their practices, including attitude to people with disabilities. METHODOLOGY: Interviews were conducted with 26 paediatricians regarding their disclosure practices and their experience, training, contact with children with significant disabilities and influences on practices. Anonymous self-report questionnaires to the same group of practitioners relating to attitude to disability were also employed. RESULTS: Paediatricians' practices in the disclosure process scored relatively low on an index based upon recommended practices. No significant relationships were found between index scores and the experience or training of the paediatrician or the amount of contact of the paediatrician with children with disabilities. However, more experienced paediatricians were found to be more likely to mention the practice of informing both parents together and the presence of a support person at the time of disclosure. Paediatricians having more contact with children with disabilities were more likely to mention that they would disclose disability in a child as soon as possible. The major modifying influences on disclosure practices were reported to be the intelligence of the parents and their emotional state of at the time of disclosure. Time was the most frequently reported constraint upon disclosure practices. CONCLUSIONS: The low 'disclosure practice index' scores in this study are not necessarily an indication that practices are poor, as there are challenges to the validity of the advocated practices. There were few significant associations found between the practices of paediatricians in disclosure and their experience, training, contact with children with disabilities and attitude to people with disabilities.

Australia↗

Parents' disclosure of HIV to their children.

OBJECTIVE: Parents' disclosure of their HIV serostatus to all of their children is described over time and the impact of disclosure is examined for their adolescent children. DESIGN A representative cohort of parents living with HIV (n = 301) and their adolescent children (n = 395) was recruited and assessed repeatedly over 5 years. METHODS: Disclosures by parents living with HIV of their HIV status to their children were examined in three ways: (i) trends in disclosure over 5 years to all children; (ii) factors associated with parental disclosure; and (iii) the impact of disclosure on adolescent children (not younger children). RESULTS: Parents were more likely to disclose to older (75%) than to younger children (40%). Mothers were more likely to disclose earlier than fathers and they disclosed more often to their daughters than to their sons. Parents were more likely to disclose over time to children of all ages; disclosure did not vary according to parents' ethnicity, socio-economic status, self-esteem, or mental health symptoms. Disclosure was significantly more common among parents with poor health, more stressful life events, larger social networks, and those who perceived their children experiencing more HIV-related stigma. Over time, poor health status and a self-destructive coping style were associated with higher rates of disclosure. Parental disclosure was significantly associated with more problem behaviors and negative family life events among their adolescent children. CONCLUSION: Parental disclosure of HIV status is similar to disclosures by parents with other illnesses. Clinicians must assist patients to make individual decisions regarding disclosure.

Adaptation, Psychological↗

An empirically derived taxonomy of factors affecting physicians' willingness to disclose medical errors.

BACKGROUND: Physician disclosure of medical errors to institutions, patients, and colleagues is important for patient safety, patient care, and professional education. However, the variables that may facilitate or impede disclosure are diverse and lack conceptual organization. OBJECTIVE: To develop an empirically derived, comprehensive taxonomy of factors that affects voluntary disclosure of errors by physicians. DESIGN: A mixed-methods study using qualitative data collection (structured literature search and exploratory focus groups), quantitative data transformation (sorting and hierarchical cluster analysis), and validation procedures (confirmatory focus groups and expert review). RESULTS: Full-text review of 316 articles identified 91 impeding or facilitating factors affecting physicians' willingness to disclose errors. Exploratory focus groups identified an additional 27 factors. Sorting and hierarchical cluster analysis organized factors into 8 domains. Confirmatory focus groups and expert review relocated 6 factors, removed 2 factors, and modified 4 domain names. The final taxonomy contained 4 domains of facilitating factors (responsibility to patient, responsibility to self, responsibility to profession, responsibility to community), and 4 domains of impeding factors (attitudinal barriers, uncertainties, helplessness, fears and anxieties). CONCLUSIONS: A taxonomy of facilitating and impeding factors provides a conceptual framework for a complex field of variables that affects physicians' willingness to disclose errors to institutions, patients, and colleagues. This taxonomy can be used to guide the design of studies to measure the impact of different factors on disclosure, to assist in the design of error-reporting systems, and to inform educational interventions to promote the disclosure of errors to patients.

Attitude of Health Personnel↗

Disclosure of information to adult cancer patients: issues and update.

Clinicians are regularly faced with decisions regarding disclosure of information to cancer patients. Many of these decisions constitute a dilemma between the physician's paternalistic concern for the patient and the patient's right to know as much as possible. This paper reviews changes in the attitudes of physicians over the last several decades, elaborates on the problems that confront the clinician in the process of disclosure, and reviews the available data concerning the documented impact on the patient from receiving or not receiving information. The arguments both supporting and challenging the paternalistic view are discussed, and the necessity for viewing the disclosure of clinical information as a clinical process is offered.

Attitude of Health Personnel↗

Long-term ventilation for patients with Duchenne muscular dystrophy : physicians' beliefs and practices.

STUDY OBJECTIVES: Although long-term ventilation (LTV) has been shown to extend the lives of individuals with Duchenne muscular dystrophy (DMD), initiating LTV is still considered controversial. The purpose of the study was to describe the LTV-related attitudes and practices of Canadian physicians who follow up patients with DMD. DESIGN: The study consisted of a mail questionnaire supplemented by face-to-face interviews. PARTICIPANTS: Forty-five physicians who follow up patients with DMD through Canadian neuromuscular clinics. MEASUREMENTS: A mail questionnaire of 66 closed-ended questions related to practice and attitudes was completed by all respondents. Qualitative semistructured interviews were conducted with six volunteer physicians, and were audiotaped and transcribed. RESULTS: The results indicated that 25.0% of physicians do not discuss LTV with all of their DMD patients. The most frequently cited reason for advising against LTV was poor patient quality of life (52.6%). Three themes emerged from the qualitative data: mentioning and discussing LTV are discrete events with different purposes, nighttime and full-time LTV decisions are approached differently, and physicians modify their discussions to influence outcome. CONCLUSIONS: The study demonstrated considerable agreement among the physicians regarding disclosure practices. Concerns are raised by the number of physicians who do not disclose to all patients and families and the role of quality-of-life judgments in decision making. It is suggested that because of their subjective nature, quality-of-life judgments should not be made without the participation of the patient and family, and that an initial disclosure is the minimum requirement of informed consent/decision making.

Attitude of Health Personnel↗

Association of maternal psychological functioning to pathology in child sexual abuse victims.

The purpose of this study was to assess the psychological impact of disclosure of sexual abuse on child victims and their mothers and evaluate whether there was an association between maternal distress and report of child behavioral and psychological problems. Data on child psychological and behavioral problems and maternal psychological functioning were collected at the time of disclosure of sexual abuse and 9 months later for 49 subjects. The study showed the heterogeneity and severity of problems among victims and their mothers at baseline. These problems persisted almost a year later. Maternal distress was strongly correlated with the mothers' assessments of child functioning and was less strongly associated with the children's own assessments of their status. Because the mothers in this study reported high levels of persistent distress for themselves and their children, comprehensive intervention with the family may be an efficient route to child recovery after disclosure of sexual abuse.

Adolescent↗

Ethical guidelines for the evaluation of living organ donors.

Transplantation is an effective, life-prolonging treatment for organ failure. Demand has steadily increased over the past decade, creating a shortage in the supply of organs. In addition, the number of deceased organ donors has reached a plateau. Living-donor transplantation is increasingly an option, influenced by favourable clinical outcomes and increased waiting times at most transplant centres across North America. Living-donor kidney transplants have exceeded deceased-donor transplant rates at some centres. Organ donations from living donors have challenged transplant programs to develop a framework for determining donor acceptability. After a multidisciplinary consensus-building process of discussion and debate, the Multi-Organ Transplant Program of the University Health Network in Toronto has developed ethical guidelines for these procedures. These proposed guidelines address ethical concerns related to selection criteria and procedures, voluntariness, informed consent and disclosure of risks and benefits to both donor and recipient.

Ethics, Clinical↗