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Biomedical subjects

Paul S Appelbaum

Publications and source records attributed to Paul S Appelbaum.

At least 37 records · Page 2Linked to original sources

Against the grain? A reasoned argument for not closing a state hospital.

In the face of the Massachusetts Governor's attempts to close one of the state's four remaining state hospitals, Massachusetts legislators overrode the Governor's veto of funding for the hospital, but required the state's Mental Health Authority to author a study of the implications of further loss of public sector inpatient beds. The Center for Mental Health Services Research of the University of Massachusetts Medical School conducted its own study concluding that maintaining a longer-term inpatient capacity in the public sector in central Massachusetts was both necessary and accrued a significant number of benefits. This article can serve as a model for the reasoned position that a state hospital in 21st century psychiatry can be looked at as a multiservice center that fulfills a key role in a public sector, integrated system of treatment, care, training and research.

Bed Occupancy↗

The capacity to vote of persons with Alzheimer's disease.

OBJECTIVE: The right to vote can be abrogated when persons become incompetent to cast a ballot. This applies particularly to people with Alzheimer's disease, who at some point will lose capacity. A 2001 federal court decision offered the first clear criteria ("Doe voting capacity standard") for determining voting competence, focused on understanding the nature and effect of voting and on the ability to choose. This article explores how persons with Alzheimer's disease perform on these criteria. METHOD: The Doe standard was operationalized in a brief questionnaire, along with measures of appreciation and reasoning about voting choices. Performance was assessed in 33 patients attending an Alzheimer's disease clinic and was related to dementia severity and demographic characteristics. RESULTS: The interview questions were scored with high reliability. Performance on the Doe questions, along with appreciation and reasoning, correlated strongly with Mini-Mental State Examination (MMSE) scores. Patients with very mild to mild Alzheimer's disease generally retained adequate ability to vote, and most persons with severe Alzheimer's disease did not. Performance was highly variable among persons with moderate Alzheimer's disease. The desire to vote was a poor predictor of voting capacity. CONCLUSIONS: The capacity to vote, as embodied in the Doe voting capacity standard, can be measured simply and reliably. Structured assessment is particularly likely to be useful for people with moderate Alzheimer's disease, whose performance cannot be predicted from MMSE scores alone. This approach can ensure retention of voting rights by capable persons and exclusion of clearly impaired persons from the voting booth.

Aged↗

Use of leverage to improve adherence to psychiatric treatment in the community.

OBJECTIVES: A variety of tools are being used as leverage to improve adherence to psychiatric treatment in the community. This study is the first to obtain data on the frequency with which these tools are used in the public mental health system. Patients' lifetime experience of four specific forms of leverage-money (representative payee or money handler), housing, criminal justice, and outpatient commitment-was assessed. Logistic regression was used to examine associations between clinical and demographic characteristics and receipt of different types of leverage. METHODS: Ninety-minute interviews were conducted with approximately 200 adult outpatients at each of five sites in five states in different regions of the United States. RESULTS: The percentage of patients who experienced at least one form of leverage varied from 44 to 59 percent across sites. A fairly consistent picture emerged in which leverage was used significantly more frequently for younger patients and those with more severe, disabling, and longer lasting psychopathology; a pattern of multiple hospital readmissions; and intensive outpatient service use. Use of money as leverage ranged from 7 to 19 percent of patients; outpatient commitment, 12 to 20 percent; criminal sanction, 15 to 30 percent; and housing, 23 to 40 percent. CONCLUSIONS: Debates on current policy emphasize only one form of leverage, outpatient commitment, which is much too narrow a focus. Attempts to leverage treatment adherence are ubiquitous in serving traditional public-sector patients. Research on the outcomes associated with the use of leverage is critical to understanding the effectiveness of the psychiatric treatment system.

Adult↗

Mental health training for law enforcement professionals.

The purpose of this pilot study was to determine topics of interest and preferred modalities of training for police officers in their work with persons with mental illness. Police officers across Massachusetts attending in-service mental health training were asked to rate the importance of potential mental health topics and the effectiveness of potential training modalities on a Likert-type scale. Additional data collected included the officer's experience, level of education, motivation for attendance, previous attendance of post-academy mental health training, and preferences for length, frequency, training site, and trainer qualifications. A t test was used to determine if there were significant differences (p < .05) between those who volunteered and those who were mandated to attend the training. Repeated-measures ANOVAs were used to determine if there were significant differences (p < .05) between mental health topics and lecture formats and to determine the effect of education and experience on the results. Although all topics suggested were rated, primarily, as fairly important, the topics of Dangerousness, Suicide by Cop, Decreasing Suicide Risk, Mental Health Law, and Your Potential Liability for Bad Outcomes were given the highest ratings. Role-playing was rated significantly lower than other training modalities, while Videos and Small Group Discussion had the highest mean scores. Level of prior education had no significant effect on the ratings, but officers with more experience rated the importance of mental illness as a training topic significantly higher than officers with less experience. This survey suggests that police officers are interested in learning more about working with persons with mental illness and view it as an important aspect of the job.

Adult↗

Addressing the ethical, legal, and social issues raised by voting by persons with dementia.

This article addresses an emerging policy problem in the United States participation in the electoral process by citizens with dementia. At present, health care professionals, family caregivers, and long-term care staff lack adequate guidance to decide whether individuals with dementia should be precluded from or assisted in casting a ballot. Voting by persons with dementia raises a series of important questions about the autonomy of individuals with dementia, the integrity of the electoral process, and the prevention of fraud. Three subsidiary issues warrant special attention: development of a method to assess capacity to vote; identification of appropriate kinds of assistance to enable persons with cognitive impairment to vote; and formulation of uniform and workable policies for voting in long-term care settings. In some instances, extrapolation from existing policies and research permits reasonable recommendations to guide policy and practice. However, in other instances, additional research is necessary.

Civil Rights↗

Correlates of treatment-related decision-making capacity among middle-aged and older patients with schizophrenia.

BACKGROUND: Antipsychotic medications constitute the backbone of treatment for schizophrenia. Current guidelines require clinicians to obtain patients' informed consent for treatment, but few empirical studies of the capacity of patients with schizophrenia for meaningful consent in this context exist. This issue may be particularly relevant for middle-aged and older patients, as the cognitive changes associated with normal aging may have an adverse impact on decision-making processes. We examined the range, stability, and correlates of treatment-related decisional capacity in this patient population. METHODS: Participants included 59 middle-aged and older patients with schizophrenia or schizoaffective disorder and 38 normal comparison subjects. Baseline measures included the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), psychopathology rating scales, and the Mattis Dementia Rating Scale. Patients also completed a neuropsychological test battery. The MacCAT-T was readministered to patients at a 1-month follow-up. RESULTS: Relative to the comparison subjects, the patients had worse understanding of disclosed material; however, a wide range of performance was observed among patients. Variability in MacCAT-T performance was not predicted by demographic characteristics; there were no significant correlations between psychopathology ratings and MacCAT-T scores. Cognitive test scores were often significant correlates of capacity, particularly in terms of understanding and reasoning. The MacCAT-T scores were stable during the 1-month follow-up. CONCLUSIONS: Overall, middle-aged and older outpatients with schizophrenia had worse understanding of disclosed information than did normal comparison subjects, but such group comparisons obscure remarkable heterogeneity among patients. Differences in capacity appeared more related to cognitive functions than to severity of psychopathology. Such information about barriers to capacity may help in developing more effective methods of providing informed consent.

Aged↗

Therapeutic misconception and the appreciation of risks in clinical trials.

Studies repeatedly have shown that clinical research subjects have trouble appreciating the implications for their clinical care of participating in a clinical trial. When this failure is based on a lack of appreciation of the impact on individualized clinical care of elements of the research design, it has been called the "therapeutic misconception". Failure to distinguish the consequences of research participation from receiving ordinary treatment may seriously undermine the informed consent of research subjects. This article reports results concerning appreciation of the risks of trial participation from intensive interviews with 155 subjects from 40 different clinical trials at two different medical centers in the USA. Working from transcripts of the interviews, every statement of a risk or disadvantage of trial participation was identified and coded into one of 5 different categories. Totally, 23.9% of subjects reported no risks or disadvantages in spite of being explicitly asked about them. Another 2.6% reported only incidental disadvantages such as having to drive a long way to get to the experimental site. In all 14.2% reported only disadvantages associated with the standard treatment (usually side effects). Another 45.8% told the interviewer about disadvantages and risks associated with the experimental intervention (usually side effects). Only 13.5% could report any risks or disadvantages resulting from the research design itself, such as randomization, placebos, double-blind designs and restrictive protocols. The results of this research suggest that subjects often sign consents to participate in clinical trials with only the most modest appreciation of the risks and disadvantages of participation.

Academic Medical Centers↗

Ethical issues in psychiatric genetics.

As knowledge grows regarding the genetic bases of psychiatric disorders, a variety of ethical issues will need to be confronted. Current evidence suggests that the etiology of most psychiatric disorders rests on a combination of multiple genes and environmental factors. As tests for the genes involved become more easily available, pressures will arise to use them for prenatal testing, screening of children and adults, selection of potential adoptees, and pre-marital screening. Common problems that will need to be addressed include popular misunderstanding of the consequences of possessing an affected allele, impact of knowledge of one's genetic make-up on one's sense of self, and the discriminatory use of genetic information to deny persons access to insurance and employment. Although most states have some legislation aimed at preventing discrimination, the laws' coverage is spotty and federal rules are lacking. Physicians may find that newly available genetic information creates new duties for them, including warning third parties who may share the patient's genetic endowment. And genetics research itself has raised questions about when to disclose information to subjects and their family members about the genes that are being studied, and how to define the subjects of the research when information is collected about family members other than the proband. Knowledge of these dilemmas is a first step to resolving them, something that the medical profession will need to attend to in the near-term. Neglect will lead others to set the rules that will control medical practice, including the practice of psychiatry, in the new world of genetic medicine.

Adoption↗

Proxy and surrogate consent in geriatric neuropsychiatric research: update and recommendations.

OBJECTIVE: The ethics of involving decisionally incapable adults in research will continue to grow in importance as more research is conducted to address the problems of decisionally impaired persons, especially elderly persons. The authors provide an updated discussion, critique, and recommendations regarding the need for clear legal and regulatory policy on this issue. METHOD: The authors summarize and build on discussions of a workshop on proxy and surrogate consent in geriatric neuropsychiatric research sponsored by the Aging Research Consortium of the National Institute of Mental Health. They incorporate the views of various stakeholders present at the workshop as well as review recent federal and state initiatives, recent empirical research and media reports, and various commission reports and relevant regulations. RESULTS: Despite a wave of initiatives in the late 1990s to clarify policy, surrogate consent for research continues to be a murky legal area and incapable subjects in the United States still lack clear regulatory protection. There is evidence that conservative risk management strategies by institutional review boards and their institutions may severely restrict research with decisionally impaired subjects. A passive approach to this problem may no longer be feasible. A recent federal advisory report on human research protections and legislative initiatives in some states could begin to provide a blueprint for future policy making. Interim recommendations for various stakeholders are given. CONCLUSIONS: It is imperative that the scientific community, patients and their advocates, and policy makers at all levels establish a constructive dialogue to clarify ethical and legal standards in the area of proxy and surrogate consent for research.

Adult↗