Competence to Consent and Its Relationship With Cognitive Function in Patients With Schizophrenia

Competence to Consent and Its Relationship With Cognitive Function in Patients With Schizophrenia
Norio Sugawara, Norio Yasui-Furukori, Tomiki Sumiyoshi
Frontiers of Psychiatry, 12 April 2019
Abstract
Decisional capacity to consent is an emerging ethical and legal concept, and is closely related to self-determination of patients facing important medical decisions or research participations. Recently, the MacArthur Competence Assessment Tool (MacCAT), a semi-structured interview consisting of four dimensions (Understanding, Appreciation, Reasoning, and Expression of a Choice), was developed to assess the decisional capacity. Decision-making capacity in a group of patients with schizophrenia, as measured by the MacCAT, has been shown to be impaired in comparison with healthy control people. However, this does not necessarily mean the presence of impaired decisional capacity in all cases. Considering the real-world practice of obtaining informed consent from patients with schizophrenia, it is important to evaluate the relationship between psychopathological features and decisional capacity of the illness. Negative symptoms of schizophrenia have been demonstrated to be related to the ability to understand information relevant to the decision, reason rationally, and appreciate a situation and its consequences. On the other hand, positive symptoms, such as delusions and hallucinations have been an inconsistent correlate of poor capacity. Furthermore, some studies indicate that impairment of cognitive function, a core symptom of schizophrenia, could be more largely associated with decisional capacity than positive and negative symptoms. Therefore, it is reasonable to assume cognitive enhancement would enlarge the capacity to consent and promote autonomy in medical treatment and research participation in patients with schizophrenia. Further studies are warranted to elucidate this and related issues.

Editor’s note: More information regarding the MacArthur Competence Assessment Tool (MacCAT) noted in the abstract is available here.

US State Regulation of Decisions for Pregnant Women Without Decisional Capacity

US State Regulation of Decisions for Pregnant Women Without Decisional Capacity
Research Letter
Erin S. DeMartino, Beau P. Sperry, Cavan K. Doyle, Julie Chor, Daniel B. Kramer, David M. Dudzinski, Paul S. Mueller
JAMA, 23 April 2019; 321(16) pp. 1629-1631
All US states have laws addressing decision making for individuals who cannot make their own medical decisions, including provisions for advance directives and processes authorizing relatives or interested persons to direct care as surrogate decision makers, although variation among state laws is increasingly recognized. However, the prevalence and content of state statutes and official advance directive documents addressing “treatment decisions for divisionally incapacitated pregnant women” is unknown.

Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome

Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome
Anne C. Wheeler, Amanda Wylie, Melissa Raspa, Adrienne Villagomez, Kylee Miller, Anne Edwards, Margaret DeRamus, Paul S. Appelbaum, Donald B. Bailey Jr.
Journal of Autism and Developmental Disorders, 1 March 2019; pp 1–23
Abstract
Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants were 152 adolescents and adults (80 males, 72 females) with FXS who completed a measure of decisional capacity and a comprehensive battery of neurocognitive and psychiatric measures. Females outperformed males on all aspects of decisional capacity. The ability to understand aspects of the clinical trial had the strongest association with the ability to appreciate and reason about the decision. Scaffolding improved understanding, suggesting researchers can take steps to improve decisional capacity and the informed consent process.

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

Who is informed and who uninformed? Addressing the legal barriers to progress in dementia research and care
Jiska Cohen-Mansfield
Israel Journal of Health Policy Research, 20 February 2019; 8(17)
Abstract
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.