Facilitating participatory decision-making: what happens in real-world community practice?

BACKGROUND: Participatory decision-making (PDM), a widely held ideal, depends on physician facilitation of patient participation. However, little is known about how PDM facilitation is actualized in outpatient primary care. OBJECTIVES: The objective of this study was to describe the prevalence of physician facilitation of PDM in community family practices and associated physician, patient, and visit characteristics. RESEARCH DESIGN: This was a cross-sectional observational study. SUBJECTS: The study included 3,453 patients seen by 138 family physicians in 84 community practices. MAIN OUTCOME MEASURES: Research nurses directly observed PDM facilitation in consecutive adult outpatient visits. The association between PDM facilitation and patient, physician, and visit characteristics was assessed with multilevel multivariable regression. RESULTS: PDM facilitation occurred during 25% of observed patient visits. Rates varied considerably among physicians, from 0% to 79% of visits. Patient satisfaction was not associated with PDM facilitation. In multivariable analyses, employed physicians, chronic illness visits, longer visit duration, and visits involving referral were independently associated with PDM facilitation. Visits in which greater time was spent planning treatment and conducting health education were also more likely to involve facilitation of PDM. CONCLUSIONS: Community family physicians facilitate PDM at highly variable rates but focus it on patients with the greatest medical needs and most complex levels of decision making. This selective approach appears to meet patient expectations, because PDM facilitation and patient satisfaction are not associated. If patient participation is to be more widely incorporated into outpatient primary care, it must be addressed within the complexity and multiple demands of community practice.

Enhancing cognition in the intellectually intact.

As science learns more about how the brain works, and fails to work, the possibility for developing "cognition enhancers" becomes more plausible. And the demand for drugs that can help us think faster, remember more, and focus more keenly has already been demonstrated by the market success of drugs like Ritalin, which tames the attention span, and Prozac, which ups the competitive edge. The new drug Aricept, which improves memory, most likely will join them. Whether such drugs are good for individuals, or for society, is an open question, one that demands far more public discussion.

The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective.

OBJECTIVE: Primary caregivers should be aware of recent progress in the genetics of Alzheimer disease (AD) and of the clinical and ethical considerations raised regarding the introduction of genetic testing for purposes of disease prediction and susceptibility (risk) analysis in asymptomatic individuals and diagnosis in patients who present clinically with dementia. This statement addresses arguments for and against clinical genetic testing. PARTICIPANTS: The 20 participants were selected by the investigators (S.G.P., T.H.M., A.B.Z., and P.J.W.) to achieve balance in the areas of genetics, counseling, ethics, and public policy, and to include leadership from related consensus projects. The consensus group met twice in closed meetings and carried on extensive correspondence over 2 years (1995-1997). The project was supported by the National Human Genome Research Institute of the National Institutes of Health. EVIDENCE: All 4 involved chromosomes were discussed in group meetings against a background of information from several focus group sessions with AD-affected families. The focus groups comprised volunteers identified by the Cleveland Area Chapter of the Alzheimer's Disease and Related Disorders Association and represented a variety of ethnic populations. CONSENSUS PROCESS: The first draft was written in April 1996 by the principal investigator (S.G.P.) after the consensus group had met twice. The draft was mailed to all consensus group members 3 times over 6 months for extensive response and redrafting by the principal investigator until all members were satisfied. CONCLUSIONS: Except for autosomal dominant early-onset families, genetic testing in asymptomatic individuals is unwarranted. Use of APOE genetic testing as a diagnostic adjunct in patients already presenting with dementia may prove useful but it remains under investigation. The premature introduction of genetic testing and possible adverse consequences are to be avoided.

Money-back guarantees for IVF: an ethical critique.

Author contends that the moral arguments supporting money-back guarantees on infertility services are flawed because such services damage the physician-patient relationship and threaten the meaning of parenthood.

Performance-enhancing drugs, fair competition, and Olympic sport.

Drug control has become an important component of Olympic sport. At the Atlanta Centennial Olympic Games, urine samples will be tested for prohibited substances, including stimulants, narcotics, anabolic agents, diuretics, peptides, and glycoprotein hormones as well as prohibited methods of enhancing performance, including blood doping and pharmacological, chemical, and physical manipulation of the urine. Drug testing programs must address short-acting stimulants, beta-blockers, and diuretics; training drugs such as anabolic steroids; and drugs affecting the detectability of other drugs. Programs include short- or no-notice testing during training periods, testing at qualifying competitions, and testing at the Olympic Games. Procedures and disposition that occur when a prohibited substance is found in an athlete competing in an Olympic sport are discussed. An analysis of the ethics of the use of performance-enhancing drugs in sports and of drug control in terms of fair competition and the impact of enhancement technologies of the meaning of sports also is presented.

The Human Genome Project: ethical and social implications.

This article explores some of the potential moral and social ramifications of the Human Genome Project. Research on the human genome is generating important ethical and social questions of at least three distinct kinds. First, what genetic information should be generated, and who should control its dissemination and use? Improved diagnostic techniques such as presymptomatic testing, carrier screening, and prenatal screening can provide information that poses significant ethical problems for individuals, employers and insurance companies, and the medical and counseling professions. Second, what genetic procedures should be employed? The burgeoning ability to manipulate human genotypes and phenotypes through procedures such as gene therapy and enzyme therapy are leading to difficult questions about which manipulations should be permitted and which should be prohibited. Third, how will this new information change lives? Increasing claims about the relationship of genetics to ethically and politically significant traits and behaviors are challenging human self-understanding and the capacity of social institutions to respond adequately.

Assessing genetic technologies. Two ethical issues.

Assessment of the impact of genetic technologies requires an understanding of the ethical issues that such technologies raise, which in turn requires an understanding of the social context of genetics. This article discusses 10 factors that characterize the social context of contemporary genetics, and considers two presumptions that usually are unquestioned--first, that more choice is always better; second, that what can be improved should be improved. Recent experience with genetic screening and testing to increase reproductive choice indicates that it is sometimes an ambiguous good. Prenatal testing, which has been guided by an ideology of nondirective counseling, will become increasingly problematic as the menu of possible genetic tests grows longer, because nondirectiveness offers no way to distinguish between significant disease and parental whim. In the realm of reproduction, more choice may also come to mean increasing parental responsibility to have genetically "healthy" offspring. Technologies intended to improve health outcomes may also be used for non-health-related goals--such as to increase athletic performance or to capitalize on social prejudices. Genetic technologies increasingly will challenge the troubled distinction between therapy and enhancement.

Ethics, genetic prediction, and heart disease.

As we identify genes predictive of diseases such as heart disease, stroke, or cancer, we may unwittingly deprive individuals and families at risk of such diseases from access to health care. This is a problem in distributive justice. Commercial health insurance is built along lines similar to other forms of commercial insurance in which the notion of "actuarial fairness" plays a key role. Actuarial fairness contends that parties seeking insurance ought to pay according to their respective risks of filing a claim. Underwriting is the process by which insurers estimate the likelihood that an applicant would be making a claim. The human genome project has brought the latent ethical problems in commercial health insurance to the surface. In the scenario feared by insurers, predictive genetic tests will filter into general medical practice. Individuals who learn that they are at increased risk of such disease are more likely to purchase insurance. Such behavior is known as "adverse selection" by the insurance industry. Individual companies, in an effort to avoid adverse selection, may seek genetic information about their prospective customers, and other companies may follow suit. Such a scenario has led to the establishment of a national Task Force on Genetic Information and Insurance under the aegis of the human genome project. The Task Force seeks to clarify the empirical and moral components of the controversy. Key questions include the social purpose of health insurance, whether adverse selection is a genuine concern in the context of genetic testing, and the appropriateness of risk underwriting for access to health care.(ABSTRACT TRUNCATED AT 250 WORDS)

Moral reasoning in social context.

Scholarly thinking about morality has been deeply affected by the confrontation with practical moral problems epitomized by bioethics. Attention to social context is increasingly seen as vital to sound moral reasoning. The dominant model in bioethics assumes that moral reasoning proceeds downward, from fundamental principles to specific cases. This top-down model, deductivism, is flawed both as a description of moral reasoning, and as a prescription for how moral reasoning should be done. In recent years, another model known as casuistry and based on case-centered moral reasoning has emerged to challenge deductivism. Casuistry suggests new lines of empirical and conceptual research into the history of moral disputes and the practice of moral reasoning and debate.