Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying.

BACKGROUND: In May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts.This study aims to explore how the experts presenting evidence to the Commission on Assisted Dying conceptualised mental capacity for patients requesting assisted suicide and examine these concepts particularly in relation to the principles of the Mental Capacity Act 2005. METHODS: This study was a secondary qualitative analysis of 36 transcripts of oral evidence and 12 pieces of written evidence submitted by invited experts to the Commission on Assisted Dying using a framework approach. RESULTS: There was agreement on the importance of mental capacity as a central safeguard in proposed assisted dying legislation. Concepts of mental capacity, however, were inconsistent. There was a tendency towards a conceptual and clinical shift toward a presumption of incapacity. This appeared to be based on the belief that assisted suicide should only be open to those with a high degree of mental capacity to make the decision.The 'boundaries' around the definition of mental capacity appeared to be on a continuum between a circumscribed legal 'cognitive' definition of capacity (in which most applicants would be found to have capacity unless significantly cognitively impaired) and a more inclusive definition which would take into account wider concepts such as autonomy, rationality, voluntariness and decision specific factors such as motivation for decision making. CONCLUSION: Ideas presented to the Commission on Assisted Dying about mental capacity as it relates to assisted suicide were inconsistent and in a number of cases at variance with the principles of the Mental Capacity Act 2005. Further work needs to be done to establish a consensus as to what constitutes capacity for this decision and whether current legal frameworks are able to support clinicians in determining capacity for this group.

[Assessment of legal capacity and testamentary capacity]. / Begutachtung der Geschäfts- und Testierfähigkeit.

The assessment of legal capacity and testamentary capacity require thorough knowledge of the legal framework and the relevant case law. This paper explains the concept of the legal capacity to contract and the concept of testamentary capacity with respect to German civil law. The relevance of major mental disorders for the assessment of legal capacity and testamentary capacity is discussed.

The checkered history of American psychiatric epidemiology.

CONTEXT: American psychiatry has been fascinated with statistics ever since the specialty was created in the early nineteenth century. Initially, psychiatrists hoped that statistics would reveal the benefits of institutional care. Nevertheless, their fascination with statistics was far removed from the growing importance of epidemiology generally. The impetus to create an epidemiology of mental disorders came from the emerging social sciences, whose members were concerned with developing a scientific understanding of individual and social behavior and applying it to a series of pressing social problems. Beginning in the 1920s, the interest of psychiatric epidemiologists shifted to the ways that social environments contributed to the development of mental disorders. This emphasis dramatically changed after 1980 when the policy focus of psychiatric epidemiology became the early identification and prevention of mental illness in individuals. METHODS: This article reviews the major developments in psychiatric epidemiology over the past century and a half. FINDINGS: The lack of an adequate classification system for mental illness has precluded the field of psychiatric epidemiology from providing causal understandings that could contribute to more adequate policies to remediate psychiatric disorders. Because of this gap, the policy influence of psychiatric epidemiology has stemmed more from institutional and ideological concerns than from knowledge about the causes of mental disorders. CONCLUSION: Most of the problems that have bedeviled psychiatric epidemiology since its inception remain unresolved. In particular, until epidemiologists develop adequate methods to measure mental illnesses in community populations, the policy contributions of this field will not be fully realized.

An evaluation of the factor structure of the Instrumental Activities of Daily Living Involvement and Capacity scales of the Minimum Data Set for Home Care for elderly Chinese Community dwellers in Hong Kong.

The objective of this study was to evaluate the factor structure of the Instrumental Activities of Daily Living (IADL) Involvement and Capacity scales of the Chinese version of the Minimum Data Set-Home Care (MDS-HC) in a sample of Chinese older adults living in Hong Kong (n=3,523). The results of confirmatory factor analyses supported the one-factor model for both IADL Involvement and IADL Capacity scales. Evidence indicated that both scales had good internal consistency (.88) and were reliable and valid in assessing IADL among elderly Chinese community dwellers.

[Socio-medical aspects of mental disorders : Definition, epidemiology, context and assessment of capacity]. / Sozialmedizinische Aspekte bei psychischen Erkrankungen : Definition, Epidemiologie, Kontextbedingungen und Leistungsbeurteilung.

Social medicine is an interdisciplinary field of medicine which analyses and describes the interactions between illness, individual, society, and organisational structures of the health care system, including prevention, treatment and rehabilitation. Part of social medicine is epidemiology, including analytic epidemiology. The goal is to monitor the prevalence and spectrum of illnesses in the general population or subpopulations and to study possible risks of illness. The question is which environmental or contextual factors influence the prevalence and course of illnesses. Another area of social medicine is to evaluate patients and decide who needs social support. Important topics are inability to work, need for early retirement and pension, or disability. In this context it is important to make a distinction between functions, capacities, context and participation. There is a second paper on social medicine which covers modes of care and treatment in social medicine.

[Forensic-psychiatric criteria for evaluating the capacity to take decisions freely and consciously and to express one's will]. / Psychiatryczno-sadowe kryteria oceny zdolnosci do swiadomego albo swobodnego powziecia decyzji i wyrazenia woli.

The report presents the current views on the development, course, as well as mechanisms underlying some disorders in the sphere of motivational processes, and especially in the sphere of will expression, aspirations and actions. The authors also analyze various aspects of the effect that is exerted by such disorders on such mental and psychosomatic functions that determine the validity of will declaration. The report emphasizes the necessity for separate evaluation of the ability to consciously or freely express will and reach decisions. Another important issue discussed in the paper is the prerequisite of including the effect of a given specific legal situation and factors other than psychopathological that can modify motivation, behavior and actions undertaken by the evaluated person.

[Mental state and the criminal responsibility--legal regulations and medical criteria in Poland and other countries]. / Stan psychiczny a odpowiedzialnosc karna--regulacje prawne i kryteria medyczne w Polsce oraz innych panstwach.

In contemporary civilized legal systems, sanity is a prerequisite for criminal responsibility of the perpetrator. Thus, insanity resulting from certain psychiatric and psychological disorders is a circumstance excluding the guilt. General assumptions of insanity criteria are close and similar in legal systems of the majority of countries; however, certain essential differences appear in details of their interpretation and acceptance. These differences in particular appear among systems of continental European states as opposed to these, in which the judiciary system is derived from the English law. The paper presents and discusses in detail the legal and medical considerations of insanity defense in Poland, as well as outlines the legal foundations of this issue in other countries of Europe, North America and Australia.

Who is informed and who uninformed? Addressing the legal barriers to progress in dementia research and care.

Conduct of research is an essential tool for the evaluation and improvement of health services. In Israel, research on persons with dementia is very limited, with the largest portion of such research involving a few surveys and examining risk factors for dementia. Very few studies describe clinical research, and those that do either include participants at early stages of dementia, or rely completely on caregivers' perceptions and experiences, often without reference to any individual with dementia. This dearth of research is due, to a substantial extent, to Ministry of Health regulations which do not permit family proxy consent for research involving persons with dementia. Alternative models for regulation of consent for research exist in other countries, including the U.S., and these allow for proxy consent under certain conditions. This paper presents such a model and its underlying ethical principles. It contends that the current state of affairs, which stands in the way of clinical research concerning persons with advanced dementia, is contrary to the interests of such persons, their caregivers, and Israeli society. Therefore, this paper calls for a change in the present regulations and/or law in the cause of advancing knowledge and improving care for persons with dementia.

Developing a self-rating measure of patient competence in the context of oncology: a multi-center study.

OBJECTIVE: Concepts of patient competence (PC) are being increasingly used, but seldom clearly defined in the context of shared medical treatment decision making and coping with cancer. The meaning of such concepts should therefore be clarified, and measures developed that permit the assessment of different facets of this patient characteristic. Consequently, this study attempted to contribute to the definition and measurement of PC. METHODS: Employing literature reviews and qualitative interviews, we developed a working definition of PC in the context of cancer from which we designed a self-rating measure of this patient characteristic that was then tested for validity and reliability in a sample of N=536 patients with cancer. RESULTS: Using factor analyses, we developed five problem- and three emotion-focused subscales that measure distinct facets of PC with satisfactory reliability. Additional analyses provide preliminary evidence of the instruments' validity. CONCLUSIONS: This study represents an essential first step in developing a reliable self-rating measure of PC in the context of cancer. Although further refinement of this measure is clearly required, it provides a preliminary methodological basis for empirically investigating the determinants and potential health effects of PC.

Assessing decisional capacity for clinical research or treatment: a review of instruments.

OBJECTIVE: The need to evaluate decisional capacity among patients in treatment settings as well as subjects in clinical research settings has increasingly gained attention. Decisional capacity is generally conceptualized to include not only an understanding of disclosed information but also an appreciation of its significance, the ability to use the information in reasoning, and the ability to express a clear choice. The authors critically reviewed existing measures of decisional capacity for research and treatment. METHOD: Electronic medical and legal databases were searched for articles published from 1980 to 2004 describing structured assessments of adults' capacity to consent to clinical treatment or research protocols. The authors identified 23 decisional capacity assessment instruments and evaluated each in terms of format, content, administration features, and psychometric properties. RESULTS: Six instruments focused solely on understanding of disclosed information, and 11 tested for understanding, appreciation, reasoning, and expression of a choice. The instruments varied substantially in format, degree of standardization of disclosures, flexibility of item content, and scoring procedures. Reliability and validity also varied widely. All instruments have limitations, ranging from lack of supporting psychometric data to lack of generalizability across contexts. CONCLUSIONS: Of the instruments reviewed, the MacArthur Competence Assessment Tools for Clinical Research and for Treatment have the most empirical support, although other instruments may be equally or better suited to certain situations. Contextual factors are important but understudied. Capacity assessment tools should undergo further empirically based development and refinement as well as testing with a variety of populations.

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.

Concerned about client decision-making capacity? Considerations for practice.

Many more people are reaching old age than ever before, and older people are increasingly living longer. As the nation experiences this unprecedented growth of older Americans, geriatric case managers are likely to encounter many clients at very advanced ages. Concomitantly, practitioners will confront elders with questionable decision-making capacity, as dementia and other cognitive impairments are more common among the older age groups. These clients pose potential safety and well-being concerns and may be vulnerable to exploitation, neglect, and abuse in their homes. Case managers' responses to such client scenarios may range from little involvement, by acquiescing to the client's right to make autonomous decisions, to resorting to legal action, which may lead to a substantial loss of rights for the elder. This article provides considerations for practice with elders presenting with questionable decision-making capacity and precarious living situations. The distinction between capacity and competency is presented and factors affecting decision making are discussed. Ethical aspects are addressed and the process of assessing capacity is reviewed to enhance case managers' practices in this area.

Assessing the competence of persons with Alzheimer's disease in providing informed consent for participation in research.

OBJECTIVE: The capacity of persons with Alzheimer's disease or other neuropsychiatric disorders for giving consent to participate in research has come under increasing scrutiny. While instruments for measuring abilities related to capacity have been developed, how they should be used to categorize subjects as capable or incapable is not clear. A criterion validation study was carried out to help address this question. METHOD: The authors measured the ability of 37 subjects with mild-to-moderate Alzheimer's disease and 15 elderly comparison subjects to provide consent for participation in a hypothetical clinical trial. Using the judgment of three experts as the criterion standard, the authors performed a receiver operator characteristic analysis for the capacity ability measures from the MacArthur Competence Assessment Tool-Clinical Research VERSION: The results were compared with categorizations of capacity status that were based on normative values. RESULTS: While most comparison subjects scored perfectly on all measures of the competence assessment tool, the majority of the group with Alzheimer's disease showed significant decision-making impairment. Thresholds based on normative values resulted in 84% (N=31) of the Alzheimer's disease subjects being rated as incapable on at least one ability; thresholds based on expert judgment resulted in 62% (N=23) failing to meet cutoff scores on at least one ability. CONCLUSIONS: Even relatively mild Alzheimer's disease significantly impairs consent-giving capacity. But differentiating capable from incapable subjects remains an issue despite the aid of standardized tools. More research is needed to understand the relationship between subject factors (performance on ability measures) and categorical judgments about their capacity.

Capacity to consent to treatment: empirical comparison of three instruments in older adults with and without dementia.

PURPOSE: The purpose of this study was to compare adults with and without dementia on capacities to consent to treatment as assessed by three instruments. DESIGN AND METHODS: Eighty-eight older adults with mild to moderate dementia were compared with 88 matched controls on four indices of legal competency to consent to medical treatment as assessed with three capacity instruments. RESULTS: Mean performance of adults with dementia on a legal standard of understanding treatment information was impaired relative to controls on all instruments, and it was also impaired for an appreciation standard on one instrument and a reasoning standard on two instruments. However, in categorical ratings, most adults with dementia were within the normal range on all decisional capacities. Legal standards were operationalized differently across the three instruments for the capacities of appreciation and reasoning. IMPLICATIONS: Most adults with mild dementia can participate in medical decision making as defined by legal standards, although memory impairments may limit demonstration of understanding of diagnostic and treatment information. In dementia, assessments of reasoning about treatment options should focus on whether a person can describe salient reasons for a specific choice, whereas assessments of appreciation of the meaning of diagnostic and treatment information should focus on whether a person can describe the implications of various choices for future states. More research is needed to establish the reliability and validity of assessment tools and of capacity constructs.

Competence to consent to research among long-stay inpatients with chronic schizophrenia.

OBJECTIVE: Questions have been posed about the competence of persons with serious mental illness to consent to participate in clinical research. This study compared competence-related abilities of hospitalized persons with schizophrenia with those of a comparison sample of persons from the community who had never had a psychiatric hospitalization. METHODS: The study participants were administered the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), a structured instrument designed to aid in the assessment of competence to consent to clinical research. The scores of 27 persons who met DSM-IV criteria for schizophrenia who were long-stay patients on a state hospital research ward were compared with those of 24 individuals from the community who were of similar age, gender, race, and socioeconomic status. RESULTS: Significant differences were found between the patients and the community sample on three measures of competence-related abilities: understanding, reasoning, and appreciation. Degree of psychopathology and cognitive functioning were significantly negatively correlated with understanding and appreciation among the patients with schizophrenia. Length of hospitalization was significantly negatively correlated with all measures of decision-making capacities. CONCLUSIONS: The generally poor performance of the long-stay patients with chronic schizophrenia highlights the difficulties this group is likely to encounter in providing consent to research. However, variation across the sample points to the need for individualized assessment and for validated techniques for facilitating decision making in the face of decisional impairments.

Competence to consent to voluntary psychiatric hospitalization: a test of a standard proposed by APA. American Psychiatric Association.

OBJECTIVE: In the wake of the U.S. Supreme Court's 1990 decision in Zinermon v. Burch, renewed attention has been given to capacities patients must have to be considered competent to consent to voluntary hospitalization. An American Psychiatric Association (APA) task force suggested that strong policy interests support the establishment of a low threshold for competence in this situation. The study examined whether, as previous research suggested, patients would have difficulty meeting even this lenient standard. METHODS: One hundred voluntarily hospitalized psychiatric patients were read two brief paragraphs, one explaining the purposes of psychiatric hospitalization and and the other explaining policies for discharge. The paragraphs' readability measured about eighth-grade level. After each paragraph, participants were read two sets of questions, one testing recall of the presented information and the other testing recognition of the information in a true-false format. The scores of patients grouped by selected demographic and clinical variables were compared. RESULTS AND CONCLUSIONS: The vast majority of patients were able to comprehend the information that the APA task force suggested was relevant to their decision. However, a subgroup of patients who were initially admitted involuntarily had significantly poorer performance and may constitute a group who need special educational efforts focused on the consequences of voluntary admission.

Assessing dimensions of competency to stand trial: construct validation of the ECST-R.

Four decades of forensic research have left unanswered a fundamental issue regarding the best conceptualization of competency to stand trial vis-à-vis the Dusky standard. The current study investigated three competing models (discrete abilities, domains, and cognitive complexity) on combined data (N = 411) from six forensic and correctional samples. Using the Evaluation of Competency to Stand Trial-Revised (ECST-R), items representative of the Dusky prongs were used to test the three models via maximum-likelihood confirmatory factor analyses (CFA). Of the three, only the discrete abilities model evidenced a good fit, indicating that competency to stand trial should consider separately each defendant's factual understanding of the proceedings, rational understanding of the proceedings, and ability to consult with counsel. ECST-R competency scales, based on the current CFA, have excellent alphas (.83 to .89) and interrater reliabilities (.97 to .98).

Legal and psychological implications in the assessment of sexual consent in the cognitively impaired population.

The question of competency to consent to sexual activity in the cognitively impaired population continues to be a difficult assessment issue. Problems center on inconsistent legal and clinical criteria, current inadequate methods of psychological assessment, and the need to promote basic human rights, while protecting people from harm. The purpose of this study was twofold. First, the problems inherent in the psychological assessment of competency to consent to sexual activity are discussed with an emphasis on problems defining consent competency. Second, the utility of a neuropsychological test battery in assisting with the assessment of the ability to consent to sexual activity was examined. Findings indicated that executive measures of neuropsychological assessment were primarily associated with competency to consent to sexual activity. It is important that these neuropsychological measures were more accurate in categorizing competent and noncompetent individuals than methods currently in use. This suggests that sexual consent assessments in the forensic arena should include neuropsychological testing and that current methods are insufficient.

Restoration of competency to stand trial: a training program for persons with mental retardation.

This article describes the development and use of a formal training tool for restoration of competency in clients with mental retardation who are incompetent to stand trial. The program was developed at Eleanor Slater Hospital within the Rhode Island Department of Mental Health, Retardation and Hospitals. This article describes the development of The Slater Method, the training tool format, the procedure for use of the Slater Method, and the duration of treatment to restore competency to stand trial in clients with mental retardation. Although the developmentally disabled population is not limited to persons with mental retardation, we have used the phrase mental retardation instead of developmentally disabled because the judicial system more commonly uses mental retardation.

A clinical study of competency to consent to treatment in pediatrics.

A 19-item competency questionnaire for pediatric patients (CQ-Peds) was used to evaluate competency to consent to treatment in pediatric outpatients and inpatients at two university hospitals. Sixty-nine consecutive English-speaking pediatric outpatients were studied at Hospital A, and 23 consecutive English-speaking pediatric inpatients were studied at Hospital B. Demographic data were statistically analyzed using the chi-square test, and there were no significant differences between the competent and incompetent groups (using CQ-Peds scores and cutoffs). CQ-Peds scores correlated highly with age (r = .947, p < .003; Outpatient Hospital A). Using the Child Behavior Checklist (CBCL) and the Pediatric Symptom Checklist (PSC) as a screen for psychopathology, the presence of psychiatric disturbance, per se, did not correlate with low CQ-Peds scores, nor was there a statistical difference between children from Spanish-speaking households and those from English-speaking households (Inpatient Hospital B). Overall, the children scored well on the CQ-Peds and demonstrated a good appreciation for their illnesses and treatment. The CQ-Peds score correlated highly with the that on the Wechsler Intelligence Scale for Children Revised Edition (WISC-R) vocabulary, comprehension, and similarities subtests and also with the Wide-Range Achievement Test-III (WRAT-III) reading assessment score (Inpatient Hospital B).