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Informed consent--a survey of doctors' practices in South Africa.

OBJECTIVE: To examine doctors' practices with regard to informed consent. DESIGN: Cross-sectional, descriptive survey. PARTICIPANTS AND SETTING: All full-time consultants and registrars in the Departments of Medicine, Obstetrics and Gynaecology, Paediatrics and Child Health, Paediatric Surgery and Surgery at the University of Cape Town were included. The overall response rate was 63% (160/254). MEASUREMENT: Data were collected by means of self-administered, semi-structured questionnaires. RESULTS: Most doctors (79%) felt it was their responsibility to ensure that patients and parents were fully informed about diagnostic and therapeutic interventions. Many (62%) supported a patient-centred standard for determining the type and amount of information to disclose. Doctors disclose most of the legally required information except for information about alternative forms of treatment and remote serious risks. They almost never provide information on medical costs. The most common reasons for not obtaining informed consent were the doctors' tendency to 'tell' patients/parents what they intend doing and their belief that patients/parents expect doctors to know what is medically best for them. Language, inadequate communication skills and lack of time were, surprisingly, seldom viewed as obstacles to the obtaining of informed consent. Findings were independent of discipline (medical or surgical) and doctors' status (consultant or registrar). Doctors who treat children were significantly less likely to obtain consent for certain interventions. CONCLUSION: Doctors meet many, but not all, of the legal requirements for informed consent. The findings question whether informed consent as envisioned by the law exists in reality. Cross-cultural research is needed to clarify patients' and parents' expectations of informed consent.

Comprehension↗

Gag rules and trade secrets in managed care contracts. Ethical and legal concerns.

Gag rules-clauses in managed care contracts that prevent physicians from disclosing information that the plan may find disparaging, but that could relate directly to the patient's health-have recently been the subject of ethical condemnation and legislative prohibition. Another serious problem in managed care contracts, trade secrets, or guidelines and quality assurance mechanisms that are imposed on physicians while their origins are shrouded in proprietary secrecy, have by contrast received little attention. Responses to these ethical challenges to the physician's integrity must involve individual physicians, managed care organizations, professional organizations, and public policymakers.

American Medical Association↗

Disclosing a diagnosis of dementia: a systematic review.

BACKGROUND: The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed. OBJECTIVE: To review empirical data regarding diagnostic disclosure in dementia. METHODS: Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis. RESULTS: Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers. CONCLUSIONS: Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure.

Attitude of Health Personnel↗

The disclosure dilemma for gay men and lesbians: "coming out" at work.

This study examined disclosing sexual orientation at work for 220 gay men and 159 lesbians. Self-acceptance, the centrality of one's identity, how "out" one is to friends and family, employer policies, and perceived employer gay-supportiveness were associated with disclosure behaviors at work for gay/lesbian employees. Disclosing at work and working for an organization perceived to be more gay supportive was related to higher job satisfaction and lower job anxiety. Reactions of coworkers to gay or lesbian workers mediated the relationship between disclosure and gay/lesbian workers' job attitudes. Implications and solutions for management are discussed.

Adult↗

Barriers to disclosure to children with HIV.

Research suggests that it is healthy for children with chronic illness to discuss their illness, but clinical experience and research indicate that this seldom occurs. The purpose of this study was to identify barriers which prevent primary caregivers from discussing HIV/AIDS with children, and ways in which medical and community services could facilitate this process. Focus groups were performed with seventeen primary caregivers of children with HIV seen for care at Chris Hani Baragwanath Hospital in Soweto, South Africa in 2001. The study revealed that primary caregivers of children with HIV typically do not disclose HIV status to their children, despite the fact that these children often ask questions about their illness. For reasons including stigma, lack of knowledge and skills, and emotional unpreparedness, primary caregivers feel uncomfortable discussing HIV and illness with children. Health care and social service providers could facilitate disclosure of illness to children with HIV.

Adolescent↗

"Keep a low profile": pesticide residue, additives, and freon use in Australian tobacco manufacturing.

OBJECTIVES: To review the Australian tobacco industry's knowledge of pesticide residue on Australian tobacco and its policies and practices on resisting calls by tobacco control advocates that consumers should be informed about pesticide residue as well as additives. METHODS: Review of previously internal industry documents relevant to pesticides and additives in Australian tobacco located from the Master Settlement Agreement websites. RESULTS: Between 1972 and 1994 Philip Morris Australia was aware that its leaf samples were often contaminated with pesticide residue, sometimes including organochlorine levels described by PM's European laboratories as being "extremely high". Consumers were not advised of the contamination nor products withdrawn. From 1981, the industry also resisted calls to declare fully the extent of use and long term safety data on all additives used in their products. They developed standard public responses that were evasive and misleading and, in 2000, implemented voluntary additive disclosure which allowed the companies to continue to avoid disclosure of any ingredient they deemed to be a trade secret. There was extensive use of ozone depleting freon in Australian tobacco manufacturing. Again, the industry kept this information away from consumers. CONCLUSIONS: Australian smokers are unable to make informed decisions about smoking because pesticide and additive disclosure remains voluntary. The Australian government should regulate tobacco to require full disclosure including information on the likely health consequences of inhaling pesticide and additive pyrolysis products.

Australia↗

The impact of polygraphy on admissions of victims and offenses in adult sexual offenders.

Sexual offenders are extremely reluctant to disclose their offending histories for a variety of psychosocial and legal reasons. The polygraph has shown promise as a intervention for eliciting admissions of past sexual offending behaviors. For 60 adult male sexual offender (35 inmates and 25 parolees), the number of victims and offenses were recorded from the Presentence Investigative Report, Sexual History Disclosure form, and 2 consecutive polygraph examination reports. Dramatic increases in the number of admitted victims and offenses were found for inmates, but not for parolees, across each source. However, there was a substantial decline in the number of victim and offense admissions by the second polygraph examination for both groups, even though 80% of the examination results reveled deception about sexual offending behaviors. Standardized use of sanctions and privileges for deceptive and nondeceptive polygraph results, respectively, are proposed as a way of eliciting full disclosure of offending histories for these offenders.

Adult↗

Patients' perceptions on informed consent and the quality of information disclosure in clinical trials.

In a survey on 26 clinical trials we studied how patients experience and evaluate the information disclosure on the clinical trial they are enrolled in and which factors influence patients' perceptions of information disclosure. Our objective was to obtain more insight thereby in how informed consent is applied in the daily practice of clinical trials. Interviews were held with 198 adult patients and 32 trial-clinicians. Instead of focusing on patient comprehension of the information disclosed we analyzed patient perceptions of informed consent. Patients proved to be quite satisfied with the oral and written information disclosure. Patients' perceptions of the manner and content of information disclosure are influenced by more general attitudes towards medical care, research and institutions. Patients' trust in medical experiments, belief in the integrity of physicians and interest in medical affairs have an impact on the way patients perceive information disclosure. To improve the quality of the informed consent procedure, we propose a patient motivation classification (PMC) to enable trial-clinicians to gain more insight into patient motivation. Relevant factors found in our data have been used as criteria for classification. An informed decision making checklist (IDC) is suggested for patients as a general outline for patient education, covering relevant socio-psychological factors of enrollment.

Attitude to Health↗

Ethical issues raised by managed care.

Health care costs have risen steadily for many years as a result of an inflationary reimbursement system, technologic advances, an aging population, and increasing patient expectations. The growth of managed care organizations (MCOs) has accelerated rapidly in recent years as an attempt to control costs. Because MCOs are involved with medicine, a moral enterprise, they enter the ethical arena. In this report several of the ethical issues raised by the attempted union of potentially conflicting systems are explored. The discussion focuses on four sets of relationships: physician-patient, physician-physician, patient-MCO and medicine-MCO as systems. Some remedies for dealing with the conflicts raised are offered.

Disclosure↗