Impact of Opera on Resilience and Thriving in Serious Mental Illness: Pilot Evaluation of The Center Cannot Hold Part 2 and Resilience Workshop.

There are few studies of impacts of arts on recovery in schizphrenia, on audience mood and social connection. We developed a pilot evaluation of opera performances in a university setting on Elyn Saks' journey from psychosis, teaching law and falling in love, coupled with pre-opera workshop on approaches to resilience. Using surveys, primary outcomes were pre and post affect (PANAS-X positive, negative; visual "affect grid" touchscreen for affective valence and arousal) and social connectedness with secondary outcomes of increasing understanding, reducing stigma and willingness to socialize or serve persons with mental illness. Of 107 live and 117 online attendees, 64 completed pre, 24 post, and 22 both surveys. Respondent characteristics were similar for those with pre and pre and post surveys: average age mid 50's, half female, 10% sexual minority, half White/Caucasian, 13% Hispanic/Latino, 11% Black/African American and 20% Asian; of 22 with pre and post, 9 (41%) were providers. There were significant post-pre increases in positive affect (PANAS-X) and arousal (visual grid) and social connectedness (Cohen's d = 0.82 to 1.24, each p < .001); and willingness to socialize with someone with schizophrenia (d = 0.68, p = .011). In this pilot evaluation of opera in a university auditorium, despite small sample sizes, there were significant post-pre increases in audience positive affect and social connection, which could reflect selection (those with positive response completing surveys) or may suggest that arts events promote well-being and connection, issues for future larger studies.

Reproductive psychiatric advance directives: promoting autonomy for perinatal people with serious mental illness diagnoses.

People with serious mental illness (SMI) diagnoses who become pregnant are particularly vulnerable to symptom recurrence and resulting potential lack of decision-making capacity (Taylor et al. J Psychiatr Res 104:100-107, 2018; Bagadia et al. Int J Soc Psychiatry 66:792-798, 2020). In these situations, prenatal and behavioral health providers have little legally viable guidance on what medical and/or psychiatric care the patient desires (Aneja and Arora Indian J Med Ethics V:133-139, 2020). We created a "Reproductive Psychiatric Advance Directive (PAD)," grounded in Reproductive Justice principles, that promotes patient autonomy by proactively articulating perinatal medical and psychiatric care preferences. We conducted a medical and legal literature review using two sets of terms related to (1) PADs and (2) reproductive health. We convened an expert working group of legal, medical, psychiatric, peer, and advocacy leaders and community-based organizations to develop a Reproductive PAD. Our literature review yielded no results about Reproductive PADs. We created de novo a Reproductive PAD template with sections on medical and psychiatric history, informed consent for critical medical and psychiatric care, family planning and custody preferences, and optional sections on abortion and on electroconvulsive therapy. The Reproductive PAD provides a possible legal mechanism for people of childbearing age with SMI diagnoses to articulate their medical and psychiatric care choices around reproduction and pregnancy. Future research should evaluate the Reproductive PAD as an effective tool for protecting patient autonomy during pregnancy and postpartum and guiding medical and psychiatric providers.

Impact of Opera on Mental Health Stigma: Pilot of Provider/Community Workshop.

BACKGROUND: Arts can influence mental health stigma, but little is known about impact of operas. We examined effects of a two-opera workshop on complicated grief and schizophrenia. METHODS: Pre-post audience surveys with post-workshop discussion. The primary outcome was a 4-item measure of willingness to engage with persons with grief or schizophrenia. Secondary outcomes were perceptions of art affecting stigma and stigma mediators. Of 47 participants, 33 had pre-post surveys for both operas. RESULTS: There was a significant pre-post opera increase in audience willingness to engage with persons with grief or schizophrenia (p < .001). Perceptions of impact on mediators such as empathy, were significantly greater for the opera on schizophrenia relative to grief (p < .001).. CONCLUSION: The pre- to post increase in audience willingness to engage with affected persons (primary) with greater impact on secondary mediators for the schizophrenia opera and post-discussion suggest that operas may be a forum for addressing mental health stigma and promoting empathy.

The Least Diverse Profession: Comment on Blanck, Hyseni, and Altunkol Wise's National Study of Diversity and Inclusion in the Legal Profession.

Diversity and Inclusion in the American Legal Profession: Discrimination and Bias Reported by Lawyers with Disabilities and Lawyers Who Identify as LGBTQ+ ("Blanck et al.") is an incredibly careful, thoughtful, and powerful article, and may and should lead to changes in the stigma, bias, and discrimination landscape in the legal profession.1.

Approaches to neuromodulation for schizophrenia.

Based on the success of deep brain stimulation (DBS) for treating movement disorders, there is growing interest in using DBS to treat schizophrenia (SZ). We review the unmet needs of patients with SZ and the scientific rationale behind the DBS targets proposed in the literature in order to guide future development of DBS to treat this vulnerable patient population. SZ remains a devastating disorder despite treatment. Relapse, untreated psychosis, intolerable side effects and the lack of effective treatment for negative and cognitive symptoms contribute to poor outcome. Novel therapeutic interventions are needed to treat SZ and DBS is emerging as a potential intervention. Convergent genetic, pharmacological and neuroimaging evidence implicating neuropathology associated with psychosis is consistent with SZ being a circuit disorder amenable to striatal modulation with DBS. Many of the DBS targets proposed in the literature may modulate striatal dysregulation. Additional targets are considered for treating tardive dyskinesia and negative and cognitive symptoms. A need is identified for the concurrent development of neurophysiological biomarkers relevant to SZ pathology in order to inform DBS targeting. Finally, we discuss the current clinical trials of DBS for SZ, and their ethical considerations. We conclude that patients with severe symptoms despite treatment must have the capacity to consent for a DBS clinical trial in which risks can be estimated, but benefit is not known. In addition, psychiatric populations should have access to the potential benefits of neurosurgical advances.

Ethical, Legal, and Clinical Considerations when Disclosing a High-Risk Syndrome for Psychosis.

There are complex considerations when planning to disclose an attenuated psychosis syndrome (APS) diagnosis. In this review, we evaluate ethical, legal, and clinical perspectives as well as caveats related to full, non- and partial disclosure strategies, discuss societal implications, and provide clinical suggestions. Each of the disclosure strategies is associated with benefits as well as costs/considerations. Full disclosure promotes autonomy, allows for the clearest psychoeducation about additional risk factors, helps to clarify and/or correct previous diagnoses/treatments, facilitates early intervention and bolsters communication between providers but there are important considerations involving heritability, comorbidity, culture, and stigma. Non-disclosure advances nonmaleficence by limiting stigma and stress (which may inadvertently exacerbate the condition), and confusion (related to the rapidly evolving diagnosis) in a sensitive developmental period but is complicated by varying patient preferences and the possibility that, as new treatments without adverse effects become available, the risk with false positives no longer justifies the accompanying loss of autonomy. Partial disclosure balances ethical considerations by focusing on symptoms instead of labels, but evidence that laypersons may interpret this information as a pseudo-diagnosis and that symptoms alone also contribute to stigma limits the efficacy of this approach. In addition, there are notable societal considerations relating to disclosure involving conservatorship, the reach of insurance companies, and discrimination. We advocate a hybrid approach to disclosure and recommend future research aimed at understanding the effects of stigma on clinical course and a renewed focus on those help-seeking cases that do not transition but remain clinically relevant.

Postsurgical morbidity and mortality favorably informs deep brain stimulation for new indications including schizophrenia and schizoaffective disorder.

Background: Deep brain stimulation (DBS) shows promise for new indications like treatment-refractory schizophrenia in early clinical trials. In the first DBS clinical trial for treatment refractory schizophrenia, despite promising results in treating psychosis, one of the eight subjects experienced both a symptomatic hemorrhage and an infection requiring device removal. Now, ethical concerns about higher surgical risk in schizophrenia/schizoaffective disorder (SZ/SAD) are impacting clinical trial progress. However, insufficient cases preclude conclusions regarding DBS risk in SZ/SAD. Therefore, we directly compare adverse surgical outcomes for all surgical procedures between SZ/SAD and Parkinson's disease (PD) cases to infer relative surgical risk relevant to gauging DBS risks in subjects with SZ/SAD. Design: In the primary analysis, we used browser-based statistical analysis software, TriNetX Live (trinetx.com TriNetX LLC, Cambridge, MA), for Measures of Association using the Z-test. Postsurgical morbidity and mortality after matching for ethnicity, over 39 risk factors, and 19 CPT 1003143 coded surgical procedures from over 35,000 electronic medical records, over 19 years, from 48 United States health care organizations (HCOs) through the TriNetX Research Network™. TriNetXis a global, federated, web-based health research network providing access and statistical analysis of aggregate counts of deidentified EMR data. Diagnoses were based on ICD-10 codes. In the final analysis, logistic regression was used to determine relative frequencies of outcomes among 21 diagnostic groups/cohorts being treated with or considered for DBS and 3 control cohorts. Results: Postsurgical mortality was 1.01-4.11% lower in SZ/SAD compared to the matched PD cohort at 1 month and 1 year after any surgery, while morbidity was 1.91-2.73% higher and associated with postsurgical noncompliance with medical treatment. Hemorrhages and infections were not increased. Across the 21 cohorts compared, PD and SZ/SAD were among eight cohorts with fewer surgeries, nine cohorts with higher postsurgical morbidity, and fifteen cohorts within the control-group range for 1-month postsurgical mortality. Conclusions: Given that the subjects with SZ or SAD, along with most other diagnostic groups examined, had lower postsurgical mortality than PD subjects, it is reasonable to apply existing ethical and clinical guidelines to identify appropriate surgical candidates for inclusion of these patient populations in DBS clinical trials.

Are we ready for a name change for schizophrenia? A survey of multiple stakeholders.

About one in 100 people worldwide are diagnosed with schizophrenia. Many people advocate for a name change for the condition, pointing to the stigma and discrimination associated with the term "schizophrenia", as well as to how the name poorly characterizes features of the illness. The purpose of this project was to collect opinions from a broad, diverse sample of stakeholders about possible name changes for schizophrenia. The project represented a partnership between researchers, clinicians, and those with lived experience with psychosis. The group developed a survey to assess opinions about the need for change in the name schizophrenia as well as potential alternate names. We accumulated 1190 responses from a broad array of community stakeholders, including those with lived experience of mental illness, family members, clinicians, researchers, government officials, and the general public. Findings indicated that the majority of respondents (74.1%) favored a name change for schizophrenia. Most (71.4%) found the name stigmatizing. Of the proposed alternate names, those with the most support included "Altered Perception Syndrome", "Psychosis Spectrum Syndrome", and "Neuro-Emotional Integration Disorder". Survey findings provide strong support for renaming schizophrenia. Most expressed hope that a name change will reduce stigma and discrimination.

Avoidance of accelerated aging in schizophrenia?: Clinical and biological characterization of an exceptionally high functioning individual.

OBJECTIVE: To determine the clinical and biological characteristics of an exceptionally high functioning index person (IP) with schizophrenia in her mid-50s, which may represent compensatory mechanisms, and potentially, avoidance of the accelerated aging typically associated with schizophrenia. METHOD: IP, 11 other women with schizophrenia, and 11 non-psychiatric comparison (NC) women were assessed with standard ratings of psychopathology, neurocognitive function, decisional capacity, and functional brain imaging. IP was also compared to a sample of demographically similar NCs (N=45) and persons with schizophrenia (N=42) on a set of blood-based biomarkers of aging related to metabolic function, oxidative stress, and inflammation. RESULTS: IP's scores on working memory, and levels of brain activation during an affective face matching task in the left fusiform, right lingual, and left precentral gyri, exceeded NCs. IP was similar to NCs in severity of negative symptoms, most neurocognitive functions, decisional capacity, and brain activation in the left inferior occipital gyrus during a selective stopping task. IP's levels on 11 of 14 metabolic and inflammatory biomarkers of aging were better than NCs and the schizophrenia group. CONCLUSION: Although speculative, results suggest a possible model in which superior working memory permits a person to be aware of the potentially psychotic nature of a thought or perception, and adjust response accordingly. Compensatory overactivity of brain regions during affective processing may also reflect heightened meta-awareness in emotional situations. Biomarker levels raise the possibility that IP partially avoided the accelerated biological aging associated with schizophrenia.

Supported Decision Making in Serious Mental Illness.

OBJECTIVE: Making decisions is central to the exercise of control over one's well-being. Many individuals with serious mental illness (SMI) experience limitations in their decision-making capacity. These individuals have often been placed under legal guardianship and substitute decision makers have been appointed to make decisions on their behalf. More recently, supported decision making (SDM) has emerged as a possible alternative in some cases. SDM involves recruitment of trusted supports to enhance an individual's capacity in the decision-making process, enabling him or her to retain autonomy in life decisions. This overview examines issues associated with decision-making capacity in SMI, frameworks of substitute decision making and SDM, and emerging empirical research on SDM. METHOD: This is an overview of the medical and legal literature on decision making capacity and supported decision making for persons with SMI. RESULTS: Many but not all individuals with SMI exhibit decrements in decision-making capacity and skill, in part due to cognitive impairment. There are no published data on rates of substitute decision making/guardianship or SDM for SMI. Only three empirical studies have explored SDM in this population. These studies suggest that SDM is viewed as an acceptable and potentially superior alternative to substitute decision making for patients and their caretakers. CONCLUSIONS: SDM is a promising alternative to substitute decision making for persons with SMI. Further empirical research is needed to clarify candidates for SDM, decisions in need of support, selection of supporters, guidelines for the SDM process, integration of SDM with emerging technological platforms, and outcomes of SDM. Recommendations for implementation of and research on SDM for SMI are provided.

Prevalence and correlates of adequate performance on a measure of abilities related to decisional capacity: differences among three standards for the MacCAT-CR in patients with schizophrenia.

Despite the availability of structured decision-making capacity assessment tools, insufficient guidance exists for applying their results. Investigators often use cutpoints on these instruments to identify potential subjects in need of further assessment or education. Yet, information is lacking regarding the effects of different cutpoints on the proportion and characteristics of individuals categorized as possessing adequate or impaired decisional abilities for consent to research. To demonstrate the potential impact of different standards, we informed 91 individuals, aged 50 or older with a diagnosis of schizophrenia or schizoaffective disorder, about a hypothetical clinical trial, and assessed their decisional abilities with the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). Three published MacCAT-CR-based standards were applied to participants' scores to examine the rates and correlates of categorical determinations of adequate performance. The three standards ranged in stringency: the most stringent incorporated cutpoints on all three of the major MacCAT-CR subscales (Understanding, Appreciation, and Reasoning); the other two standards required threshold performance only on the Understanding subscale. The most stringent standard resulted in a 57% rate of impaired performance; the intermediate standard, 19%; and the least stringent standard, 8%. Nearly half of the participants (n=45) were classified as having performed adequately by the least stringent standard yet inadequately by the most stringent. The majority of these 45 were impaired on the Appreciation subscale (n=9), Reasoning (n=15), or both (n=18). Cognitive functioning was correlated with performance status for the more stringent standards. These findings underscore the need for refinement of capacity assessment procedures and for improvements in the use of capacity assessment tools for screening purposes and to assist in categorical capacity determinations.

How Occupationally High-Achieving Individuals With a Diagnosis of Schizophrenia Manage Their Symptoms.

OBJECTIVE: The study objective was to elucidate coping strategies utilized by individuals recovered from schizophrenia. METHODS: This qualitative study enrolled individuals with schizophrenia who had reached a level of recovery defined by their occupational status. Diagnosis of schizophrenia was confirmed with the Structured Clinical Interview for DSM-IV. Current symptoms were objectively rated by a clinician. Surveys gathered information on demographic characteristics, occupation, salary, psychiatric history, treatment, and functioning. Audio-recorded person-centered qualitative interviews gathered accounts of coping strategies. Transcripts were summarized and coded with a hybrid deductive-inductive approach. RESULTS: Twenty individuals were interviewed, including ten men. The average age was 40 years. Sixty percent of participants were either currently in a master's-level program or had completed a master's or doctoral degree. Eight categories of coping strategies were identified: avoidance behavior, utilizing supportive others, taking medications, enacting cognitive strategies, controlling the environment, engaging spirituality, focus on well-being, and being employed or continuing their education. Some strategies were used preventively to keep symptoms from occurring; others were used to lessen the impact of symptoms. Strategies were flexibly utilized and combined depending on the context. CONCLUSIONS: Use of strategies in a preventive fashion, the effectiveness of the identified strategies, and the comfort individuals expressed with using several different strategies supported these individuals in achieving their occupational goals. The findings contribute to an overall shift in attitudes about recovery from schizophrenia and highlight the importance of learning from people with lived experience about how to support recovery.

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.

Meta-consent in research on decisional capacity: a "Catch-22"?

Empirical studies of ethical issues, which have increased in number and scope in recent years, may themselves raise both practical and ethical issues. One example of such an issue is the question of who may be legitimately enrolled in studies of decision-making capacity; must all participants in studies of consent capacity have capacity to consent? This question may pose a "Catch-22": For example, if some of the participants in a study of consent capacity are deemed by a particular standard to be incapable of consent. In weighing the risks and benefits of studies of consent capacity, how should reviewers consider the context of actual versus hypothetical trials for which the participant's consent is being sought? Here, we explore these "meta-consent" issues by describing the dimensions of the issue and potential solutions, centering around the concept of "active assent" (requiring expressed understanding of the purpose of the study and its voluntary nature, as well as expression of a choice to participate).

Involuntary outpatient commitment.

This article offers a novel approach to outpatient commitment (OPC). After distinguishing 4 varieties of OPC, the article shows how 3 are easy to justify, whereas "preventive outpatient commitment" (POC) requires more careful scrutiny. The article argues that, as a general matter, POC is not justified, except for on a "one free shot" basis. The hope is that patients will come to appreciate the benefits of treatment in the community and will become voluntarily compliant; after one free shot, they are in a much better position to decide. The consequences of noncompliance are also explored.