Received: 28 May 2020 Accepted: 2 July 2020 DOI: 10.1002/hsr2.179 &C?JRFѥ1AGCLACѥ0CNMPRQ RESEARCH ARTICLE The capacity of schizophrenia and bipolar disorder individuals to make autonomous decisions about pharmacological treatments for their illness in real life: A scoping review Enric Vincens Pons1 | Luis Salvador-Carulla2 | Alfredo Calcedo-Barba3 | 4 5 6 7 Silvia Paz | Thomas Messer | Bruno Paccardi | Scott L. Zeller 1 Department of Psychiatry, Parc Sanitari Sant Joan de Déu, Sant Boi de Llobregat, Barcelona, Abstract Spain Background and aim: Having decision making capacity is central to the exercise of 2 Centre for Mental Health Research, Research autonomy in mental health care. The objective of this scoping review is to summarize School of Population Health, College of Health and Medicine, Australian National University, the evidence on the capacity of people with schizophrenia or bipolar disorder to Canberra, Australia make decisions about their treatment in real life to support medical practice. 3 Department of Psychiatry, Hospital Gregorio Marañón, Medical School at the Universidad Methods: Systematic search of observational studies on the assessment of capacity Complutense de Madrid, Madrid, Spain of patients with schizophrenia, psychosis, or bipolar disorder to make healthcare and 4 SmartWriting4U, Benicassim, Spain treatment-related decisions, conducted in any clinical setting published up to January 5 Department of Psychiatry, Danuviusklinik, Pfaffenhofen, Germany 31, 2020 was performed. Free text searches and medical subject headings in English 6 Psychiatric Unit, Santa Chiara University were combined in PubMed, Scopus, CINAHL, and PsycInfo. Publications were Hospital, University of Pisa, Pisa, Italy selected as per inclusion and exclusion criteria. The Newcastle-Ottawa Scale for 7 Department of Psychiatry, University of observational studies was used to assess the quality of publications. California, California, USA Results: Thirty publications were reviewed. According to the Newcastle-Ottawa Correspondence Scale criteria, the publications reviewed were good quality. Findings showed that Alfredo Calcedo-Barba, Department of Psychiatry Hospital Gregorio Marañón, Doctor more than 70% of schizophrenia and schizoaffective disorder outpatients understood Esquerdo 46, 28007 Madrid, Spain. treatment options at the point of making decisions about their illness and healthcare. Email: calcedo@ucm.es Patients treated voluntarily had considerably better scores for decisional capacity than those treated involuntarily. The burden of psychiatric symptoms could compro- mise decisional capacity temporarily. Decision-making capacity improved over time from admission to discharge from hospital, and with treatment among psychiatry inpatients. Schizophrenia and bipolar disorder patients could be as competent as non- psychiatric individuals in making decisions about their treatments in everyday life. Conclusions: This scoping review provides a body of evidence for healthcare profes- sionals in need of assessing the capacity of schizophrenia and bipolar disorder patients for autonomously decide about their treatments. Decisional capacity judge- ments should consider variations in capacity over time and be based on the type of decision to be made, the severity of symptoms, and the specific phase of the mental disorder. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2020 The Authors. Health Science Reports published by Wiley Periodicals LLC. Health Sci Rep. 2020;00:e179. wileyonlinelibrary.com/journal/hsr2 1 of 13 https://doi.org/10.1002/hsr2.179 2 of 13 &C?JRFѥ1AGCLACѥ0CNMPRQ PONS ET AL. KEYWORDS autonomy, bipolar disorder, capacity, schizophrenia, scoping review, treatment decision making 1 | I N T RO DU CT I O N Assessing individuals' capacity to consent to or refuse treatment is a demanding task for psychiatrists, psychologists, and other Respect for autonomy is a key principle in biomedical ethics. It is, healthcare professionals, particularly when dealing with unre- however, a particularly vulnerable principle in everyday mental health presented patients.16 It requires the assessment of the individual's 1 care practice. In medical practice, autonomy is usually expressed as ability to understand their medical situation and its consequences, to the right of competent adults to make informed decisions about their form and communicate a choice about the proposed care options, and own medical care; it denotes self-government.2 Autonomy is strongly to process the information in order to reach a rational decision. The associated with the idea that patients should be allowed and enabled evaluation may happen in episodes of acute care during a crisis and it to make their own decisions about treatments they receive for their must find a balance between promoting and restoring the patient's diseases, and to make these decisions with purpose, substantial health, providing good care and assuming responsibility, while at the understanding, and freedom from controlling influences.3 same time respecting the patient's integrity, his/her right to self- A range of factors such as interactions with health-care providers determination and information, and protecting human rights.8 Profes- and symptom management challenge patient autonomy across a vari- sional judgement on these issues is required, but to date the values, ety of diseases.45 Preserving independence and privacy and dealing beliefs and previous experiences of patients with mental illness have successfully with threats to self-identity may enhance patients' auton- not been explicitly included in structured evaluations in real medical omous decision making. Policies across the world require that, where practice.17 possible, equal weight be given to the wishes, feelings, beliefs, and The aim of the present review is to assess the scope of the litera- values of patients who have decision-making capacity and of patients ture on the capacity of people with schizophrenia or bipolar disorder who are deemed to lack it.6 Psychiatry has led major improvements in to make decisions about treatments in the management of their dis- patient empowerment as part of the development of person-centered ease in real life. Building up evidence on the capacity of people with 7 care and recovery. However, paternalistic attitudes could prevail schizophrenia and bipolar disorder to make decisions about their ill- despite an awareness of patients' right to autonomy and the practi- ness is a first step on the way to a fuller consideration of their auton- tioners' duty of reciprocity that requires to build up trust with the omy in usual medical practice. patient and to involve him or her in the planning and implementation of care.8 It is important to distinguish between the concepts of capacity 2 | METHODS and competency. Capacity describes a person's ability to a make a par- ticular decision, whereas competency is a global assessment and a A systematic search of the literature was conducted observing the 9 legal determination made by a judge in court. In a medical context, Preferred Reporting Items for Systematic reviews and Meta-Analyses capacity refers to the ability to use information about an illness and extension for Scoping Reviews (PRISMA-ScR) Checklist18 to achieve proposed treatment options to make a choice that is congruent with the aim of the review. Free text searches and medical subject head- one's own values and preferences10; it is the determining element that ings were combined to identify articles published in English and inde- establishes the role of patient choices in medical decisions. Histori- xed in PubMed, Scopus, the Cumulative Index to Nursing and Allied cally, patients with severe mental illnesses have been regarded as hav- Health Literature (CINAHL) and PsycInfo since the date of their index- ing impaired capacity for making functional decisions with respect to ation up to January 31, 2020. The search strategy is summarized in their health, and their agency has been largely disregarded in diagnosis Appendix S1. Lists of references in the key papers retrieved were fur- 11 and management. Persons with schizophrenia, for instance, describe ther checked to identify other relevant articles. a sense of being considered incapable and unmotivated to exercise Inclusion criteria were any observational, real world study on their autonomy by their care givers, despite the knowledge that being schizophrenia, schizophrenic disorder, bipolar disorder, or psychosis trusted in their abilities and being offered freedom to make their own individuals reporting a qualitative and/or quantitative assessment decisions might help them to respond successfully to a series of situa- of patients' capacity to make treatment related decisions, including tions in daily life.12 Among bipolar disorder patients, medication to consent and to make advance directives, and to express prefer- schedules and a better understanding of illness and of treatment com- ences for their psychiatric medications. Publications referring to plications would foster better treatment decision-making and adher- multiple mental illnesses were included if the largest proportion of 13 ence. In both cases, the assessment of capacity is critical for the participants in the study were schizophrenia, bipolar disorder, or agreement with the therapists in shared contracts14 and with the psychosis patients. The inclusion and exclusion criteria are shown case-manager in joint care planning.15 in Table 1. PONS ET AL. &C?JRFѥ1AGCLACѥ0CNMPRQ 3 of 13 Potentially relevant abstracts were assessed by two expert represent a high risk of bias. The Newcastle Ottawa Scale is one of reviewers Full text copies were requested of all papers initially consid- the most used worldwide, above all for observational studies.47 ered suitable for inclusion in the review. Publications which were deemed pertinent after mutual agreement were reviewed and data were extracted. A third reviewer was involved in the selection process 3 | RE SU LT S to resolve any disagreements. Data extraction was carried out by one researcher. A data extraction form that covered author, year of publi- Searches identified a total of 268 hits. After reading titles and cation, country, study design, research tool, study objective, popula- abstracts and removing irrelevant and duplicates, 49 potentially rele- tion and setting was designed and applied to summarize the key vant papers were retained. Of these, 19 were excluded after assessing characteristics of publications (Table 2). the full texts and 30 publications were finally reviewed for data The appraisal of publications was based on the Newcastle Ottawa extraction (Figure 1). Scale for observational studies, developed to assess their quality and Most studies (23 out of 30) were carried out in European coun- risk of bias (Table 3).47 The Newcastle Ottawa Scale evaluates three tries and assessed healthcare and treatment decisional capacity in the quality parameters (selection, comparability, and outcome) divided inpatients setting (24 out of 30 studies). Semistructured interviews across eight specific items. Each item on the scale is scored either 0 or based on the MacArthur Competence Assessment Tool for Treatment 1, except for comparability, which can be adapted to the specific topic (MacCAT-T) was the most frequently used method for assessing of interest and may score up to 2 points. Thus, the maximum score for capacity (Table 2). each study is 9: studies with scores below five are considered to After assessing the characteristics and the nature of the evidence that emerged, publications were grouped into six main conceptual themes, as follows: (a) Insight as a determinant of decisional capacity; TABLE 1 Selection criteria (b) Cognitive performance, and appreciation, as additional determi- nants of decisional capacity; (c) Treatment related decision-making Inclusion criteria Exclusion criteria capacity maintenance despite partial impairments; (d) Retaining treat- Topics • Animal, in vitro, or other types ment related decision-making capacity while in hospital; (e) Involun- of pre-clinical study • Capacity to make decisions • Studies on dementia, Down tary admission, or involuntary treatment, as drivers of decisional about treatment/s syndrome, attention deficit- capacity impairments; (6) Regaining treatment related decision-making • Capacity to consent to hyperactivity disorders, autism capacity after impairments. treatment spectrum disorders, learning-, • Capacity to make advance sleep-, eating-hoarding-, directives regarding gambling- personality- or treatment of diseaseDisease dissociative- disorders, 3.1 | Insight is a key determinant of capacity to • Studies of decision making in consent to treatment and to decide about treatment • Schizophrenia, presence of tumours of the alternatives in patients with schizophrenia and related schizoaffective disorders, central nervous system; on bipolar disorder, cognitive deficits that occur in disorders psychosisType of study the context of progressive chronic diseases (eg, multiple The studies conducted by Capdevielle et al23 and Raffard et al42 coin- • Observational, real world sclerosis, cardiovascular, cidently showed that insight (awareness of the disease) was a good evidence studies on respiratory, infection diseases) decisional capacity • Newborn, infant, child, or indicator of capacity for deciding about treatments in outpatients with • Qualitative and/or adolescent studies schizophrenia.2342 After studying 60 schizophrenic outpatients, nega- quantitative assessment of • Intellectual, developmental, tive correlations were found between the dimension “understanding” decisional/preferences and learning disability studies of the MacCAT-T and the negative and the total Positive and Nega- elicitation capacityLanguage • Validation tool studies of publication • Clinical practice guidelines tive Syndrome Scale (PANSS) scores, and between the “appreciation,” • Studies on professionals' and “reasoning,” and “expressing a choice” MacCAT-T dimensions and the • EnglishSetting carers' decision making Scale to Assess Unawareness of Mental Disorder (SUMD) dimensions. • Any setting (inpatient, • Studies on health- and social- These findings imply that less symptomatic patients as well as those outpatient, forensic) care services provision with a higher level of comprehension of the mental disorder and its planning • Studies on consent to research consequences would have greater decisional capacity. An important • Studies on interventions to correlation between the competence to consent to treatment and improve decision making insight was reported in this population.23 Raffard et al42 explored the capacity in mental disorder relationship between capacity to consent to medication and cognitive patients • Studies on shared decision biases in 60 schizophrenia outpatients treated with antipsychotics for making 1 month and found similar correlations. The authors of both publica- • Literature reviews tions shared the conclusion that higher levels of insight were associ- • Conceptual model studies ated with a greater appreciation of both the benefits and the risks of 4 of 13 &C?JRFѥ1AGCLACѥ0CNMPRQ PONS ET AL. T A B L E 2 Summary of studies reviewed on schizophrenia and bipolar disorder patients' capacity to make decisions about treatments and to consent to treatment Author (year) Country Design Research tool Objective Population: diagnosis, n Setting Bilanakis Greece Cross-sectional, semi- MacCAT-T Treatment decision-making Schizophrenia, 21 Inpatients et al19 structured interviews BPRS capacity Internal medicine, 78 within 72 hours of admission Boettger Switzerland Cross-sectional, Descriptive Assessment of decisional All patients, 336 Inpatients et al20 and United retrospective, review of statistics capacity across a wide Psychosis: stable, on States consultations for spectrum of medical and antipsychotic medication, decisional capacity psychiatric disorders. 22.6% assessment Cognitive disorders: delirium and dementia, 42.6% Substance abuse disorder (active substance abuse prior to hospitalization: alcohol, opiates, and benzodiazepines; detoxification, and stable/ dormant substance abuse: methadone maintenance), 41.3% Others Brown United Cohort, retrospective Mental Evaluation of the frequency Schizophrenia, 547 Inpatients et al21 Kingdom assessment of case Capacity Act mental capacity is Schizoaffective and other registreis 2005 criteria assessed in psychiatric psychotic disorders 268 inpatients, whether the Bipolar disorder, 232 criteria for determining Others capacity set out in the Mental Capacity Act 2005 are used in practice, and whether this has increased with the introduction of the Mental Capacity Act 2005 Cairns United Cross-sectional, semi- MacCAT-T Prevalence of psychiatric Psychiatric patients, 112 Inpatients et al22 Kingdom structured interviews BPRS inpatients who lack (schizophrenia, 37; 9 days of admission BPCS capacity to make schizoaffective disorder, MMSE decisions about current 11; other psychotic SAI–E treatment disorder, 14) Capdevielle France Cross-sectional, semi- MacCAT-T Competence to consent to Schizophrenia, 60 Outpatients et al23 structured interviews SUMD treatment PANSS Curley Ireland Cross-sectional, semi- MacCAT-T Mental capacity for Psychiatry (schizophrenia or Inpatients et al24 structured interviews treatment decisions, a related disorder and relationship between affective disorders) mental capacity patients, 251 (categorical) and various demographics and clinical variables Curley Ireland Cross-sectional MacCAT-T Mental capacity for Psychiatry (schizophrenia or Inpatients et al25 treatment decisions, linear a related disorder and relationship between affective disorders) linear (as opposed to patients, 215 categorical) mental capacity and age. Curley Ireland Cross-sectional MacCAT-T Mental capacity for Psychiatry (schizophrenia or Inpatients et al26 treatment decisions, a related disorder and comparison of affective disorders) assessments of mental patients, 215 capacity based on legal PONS ET AL. &C?JRFѥ1AGCLACѥ0CNMPRQ 5 of 13 TABLE 2 (Continued) Author (year) Country Design Research tool Objective Population: diagnosis, n Setting criteria with assessments based on clinical criteria Dornan Ireland Cohort, prospective, time MacCAT-T Changes of mental capacity Schizophrenia patients, 37 Inpatients et al27 one and time two to make treatment structured interviews decisions over time Fernandez Ireland Cohort, prospective, MacCAT-T Capacity to consent to Psychosis, 56 Inpatients et al28 baseline, time one PANSS treatment on admission, (6 weeks) and time two at 6- and 12-weeks (12 weeks) structured following treatment. interview Ganzini United Cross sectional, Descriptive Examination of the Schizophrenia, 84 Inpatients et al29 Satates retrospective review of statistics characteristics of electronic medical records Veterans with and data warehouse schizophrenia admitted for nonpsychiatric hospitalization 30 Australia Cross-sectional, MacCAT-T Competence to give Acute psychosis, 110 Inpatients semistructured interviews PANSS informed consent to (schizophrenia, 64; treatment schizoaffective disorder, 25; bipolar disorder, 21) Kennedy31 Ireland Cross-sectional, structured MacCAT-T Determination of whether Psychosis, 88 Inpatients interviews MacCAT-FP giving extra information PANSS impairs the mental GAF capacity to make decisions about treatment. Mandarelli Italy Cross-sectional, consecutive MacCAT-T Differences in capacity to Involuntary/voluntary Inpatients et al32 series, semi-structured 24-item BPRS consent to psychiatric hospitalized acute mental interviews MMSE treatment disorder patients, 30 RCPM (schizophrenia/ schizoaffective disorder, 18; bipolar disorder, 7; obsessive compulsive disorder, 1; psychotic disorder not otherwise specified, 3; brief psychotic disorder, 1) 33 Italy Cross-sectional, consecutive MacCAT-T Decision-making capacity to Schizophrenia spectrum Inpatients series, semi-structured 24-item BPRS consent to psychiatric disorder patients, 65 interviews MMSE treatment Bipolar disorder patients, 47 Maxmin United Cross-sectional, consecutive MacCAT-T Prevalence and predictors of Dementia, 40 Inpatients and Kingdom series, semistructured mental capacity to make Depression, 37 Cooper34 interviews treatment and admission Psychotic disorder, 9 decisions in older Mania, 10 psychiatric inpatients Other, 3 Nystazaky Greece Retrospective, cross- MacCAT-T Decision making capacity on Schizophrenia and Outpatients (2018) sectional, correlational, BPRS treatment with long acting schizoaffective disorder, semi-structured injectable antipsychotic 65 interviews. medication Owen United Cross-sectional descriptive, MacCAT-T Prevalence of mental Acute psychiatric patients, Inpatients et al35 Kingdom semi-structured capacity to make 350 interviews decisions on treatment (schizophrenia, 25%; schizoaffective disorder, 6%; psychotic episode, 22%; BPD, 12%) Owen United Cross-sectional, consecutive MacCAT-T Associations of mental Acute psychiatric patients, Inpatients et al36 Kingdom series, semi-structured SAI-E capacity for treatment 200 (Continues) 6 of 13 &C?JRFѥ1AGCLACѥ0CNMPRQ PONS ET AL. TABLE 2 (Continued) Author (year) Country Design Research tool Objective Population: diagnosis, n Setting interviews (Secondary decision making with analysis) variables clinicians are more familiar with, especially insight. Owen United Cross-sectional, consecutive MacCAT-T Individuals' views on Acute psychiatric patients, Inpatients et al37 Kingdom series, semi-structured treatment decisions after 115 interviews (Secondary regaining capacity analysis) Owen United Cross-sectional consecutive MacCAT-T Associations of regaining Acute psychiatric patients, Inpatients et al38 Kingdom series, semi-structured Mental capacity to make 115 interviews capacity act treatmentdecisions (subanalysis of schizophrenia following inpatient and schizoaffective psychiatric treatment disorder patients) Owen United Secondary analysis of two MacCAT-T Comparison of decision- Acute psychiatric patients, Inpatients et al39 Kingdom cross-sectional studies, making capacity for 125 semi-structured treatment Acute medical patients interviews (nonpsychiatric), 164 Palmer United States Cross-sectional, MacCAT-T Treatment decision-making Psychosis patients, 16 (11 Outpatients et al40 semistructured interviews HCAT capacity schizophrenia, 3 PANSS schizoaffectivedisorder, 1 BPRS bipolar disorder, 1 DRS psychosis, not specified) Controls (healthy individuals), 40 (middle-aged and older patients) Palmer United States Cross-sectional, semi- MacCAT-T Range, stability, and Schizophrenia and Outpatients et al41 structured interviews correlates of treatment- schizoaffective disorders, related decisional capacity 59 with aging (schizophrenia, 49; schizoaffective disorder, 10) Controls (healthy individuals), 38 (middle-aged and older patients) Raffard France Cross-sectional, MacCAT-T Relationship between Schizophrenia patients, 60 Outpatients et al42 semistructured interviews BCIS capacity to consent to medication and cognitive biases Rutledge Ireland Cross-sectional, MacCAT-T Determination of whether Psychosis, 102 Inpatients et al43 semistructured interviews MacCAT-FP tests of fitness to plead PANSS and capacity to consent GAF are independent of each other and independent of mental state and global function in psychosis Skipworth Australia Cross-sectional MacCAT-T Assessment of the capacity Psychosis (forensic), 109 Outpatients et al44 to consent in forensic and patients at different inpatients stages of recovery and consideration of the implications of respecting their competent treatment decisions Spencer United Cross-sectional, semi- MacCAT-T Differences between Schizophrenia and related Inpatients et al Kingdom structured interviews MacCAT-CR decision-making capacity psychoses patients, 84 (2018) for treatment and research PONS ET AL. &C?JRFѥ1AGCLACѥ0CNMPRQ 7 of 13 TABLE 2 (Continued) Author (year) Country Design Research tool Objective Population: diagnosis, n Setting Vollmann Germany Cross-sectional, MacCAT-T Investigation of the Dementia, 31 Inpatients et al45 semistructured interviews competence of patients Depression, 35 with dementia, depression Schizophrenia, 43 and schizophrenia to make treatment decisions. Wong China Semi-structured interviews MacCAT-T Decision-making abilities Schizophrenia patients, 81 Inpatients et al46 regarding maintenance treatment following hospital discharge after a psychotic relapse Abbreviations: BPCS, Burlington psychological and counselling services; BPRS, Brief Psychiatric Rating Scale; DRS, Depression Rating Scale; GAF, global assessment of functioning; HCAT, Hopkins competency assessment test; MacCAT-CR, MacArthur Competence Assessment Tool for Clinical Research; MacCAT-FP, MacArthur Competence Assessment Tool for Fitness to Plead; MacCAT-T, MacArthur Competence Assessment Tool for Treatment; MMSE, Mini-Mental State Examination; PANSS, Positive and Negative Syndrome Scale; RCPM, Raven's Coloured Progressive Matrices; SAI-E, sexual arousability inventory-expanded; SUMD, scale to assess unawareness of mental disorder. treatment, with a larger ability to make comparisons with alternative was related to more severe cognitive dysfunction, conceptual disorga- treatments and to express a choice between recommended treat- nization, and poor attention. Noticeable, the authors found that deci- ments irrespective of the level of understanding. Furthermore, higher sional capacity was independent of the psychotic disorder being levels of objectivity, reflectiveness and openness to others' feedback diagnosed.30 were related to a greater ability to compare the prescribed treatment Findings from other studies further substantiated the notion of with alternatives, to discuss the consequences of treatment alterna- adequate cognitive performance for preserving healthcare decision- tives, and to evaluate their impact on everyday life.2342 making capacity. It was documented that cognitive disorders (delirium, dementia) affected the ability to make healthcare decisions the most (54.1%) compared to other psychiatric comorbidities and interfered 3.2 | Cognitive performance, and appreciation, more commonly with decisional capacity than psychotic disorders further determines decisional capacity in psychotic (25%).20 Among the patients able to express a choice about treat- disorder patients ments in the psychiatric hospital where psychotic and severe affective disorders predominated (37%), the ability to appreciate the relevance Palmer et al41 examined whether the cognitive changes associated of the information (appreciation) was a reliable indicator of their deci- with normal aging had a negative impact on decision-making pro- sion-making capacity.39 Vollman et al45 also found that schizophrenia cesses in patients with psychotic disorders and without dementia. It patients generally appreciated the treatment benefit despite a turned out that schizophrenia or schizoaffective disorder patients reduced appreciation of the mental disorder, and were more often were as good as non-schizophrenia individuals in reasoning and classified as impaired by the MacCAT-T subscales than by clinical expressing of a choice, even when age was added as a covariate. Also, assessment (53.5% vs 18.4%) depending on the cut-offs applied for the patients' level of decisional capacity was stable during the establishing incompetence.45 1-month follow-up. Schizophrenia patients scored lower only on understanding treatment-related disclosures, but with high interper- sonal variability. Thus, patients' level of capacity was not associated 3.3 | Treatment related decision-making capacity with age, or with the severity of the psychopathology, but it was is preserved despite partial impairments while in the strongly associated with cognitive test performance.41 Similarly, other community or in hospital studies reported that as many as 52.5% and 38.4% of older psychiatric inpatients had capacity to make admission and treatment related deci- Nystazaki et al (2018) found that more than 70% of 65 outpatients sions, respectively, and that capacity was associated with not having diagnosed with schizophrenia and schizoaffective disorder understood dementia, and with higher levels of insight and cognition.34 the relevance of the information related to the use of long acting Howe et al30 investigated the association between the capacity injectable antipsychotic medications. However, understanding of the to give consent to treatment, specific symptomatology, and diagnosis information on their medical condition was relatively poor (as in 110 patients with acute schizophrenia, schizoaffective disorder and assessed with the MacCAT-T subscales). Despite such partial impair- bipolar disorder admitted into hospital, all at an early stage of treat- ments, the authors concluded that none of the patients completely ment for acute psychosis. Lacking capacity to consent to treatment lacked decision-making capacity. Very much in line with these 8 of 13 &C?JRFѥ1AGCLACѥ0CNMPRQ PONS ET AL. T A B L E 3 Newcastle-Ottawa Scale: Author (year) Selection Comparability Outcome Total (maximum score 9*) summary of the quality of the studies Bilanakis et al19 *** ** ** ******* (7) reviewed on decisional capacity Boettger et al20 *** ** *** ********(8) regarding treatments and consent to Brown et al21 *** ** *** ********(8) treatment in schizophrenia or bipolar disorder persons (cohort studies) Cairns et al22 ** ** *** ******* (7) 23 Capdevielle et al ** ** ** ******(6) Curley et al24 ** * ** ****(5) 25 Curley et al ** * ** ****(5) Curley et al26 ** * ** ****(5) 27 Dornan et al *** * *** *******(7) Fernandez et al28 *** * ** ******(6) 29 Ganzini et al *** - ** ****(5) Howe et al30 *** * * *****(5) Kennedy et al (2009) *** - *** ******(6) Mandarelli et al32 *** ** ** *******(7) 33 Mandarelli et al ** ** ** ******(6) Maxmin and Cooper34 *** * *** *******(7) **Nystazaky (2018) *** ** *** ********(8) Owen et al35 ** * *** ******(6) 36 Owen et al ** * ** *****(5) Owen et al37 *** ** *** ********(8) Owen et al38 *** * ** ******(6) Owen et al39 *** ** *** ********(8) Palmer et al40 ** * *** ******(6) Palmer et al41 ** ** *** *******(7) 42 Raffard et al *** ** *** ********(8) Rutledge et al43 *** - *** ******(6) Skipworth et al 44 *** — *** ******(6) Spencer et al (2018) *** ** *** ********(8) Vollmann et al45 *** ** *** ********(8) Wong et al46 *** ** *** ********(8) Note: A study can be awarded a maximum of one star for each numbered item within the selection (five items) and outcome (two items) categories. A maximum of two stars can be given for comparability. findings, Skipworth et al44 reported that the majority of forensic lead to a decline in the patients' ability to make a choice. Up to patients (67.6% of a sample of 109) had treatment related capacity 15% of psychotic patients may become unable to decide about both in hospital and in community settings, and very few of those treatment options, particularly those with low or intermediate deci- 44 patients with capacity refused psychiatric treatment. Earlier, Palmer sional capacity scores.31 40 et al had demonstrated that understanding improved significantly over time and with repeated presentations of the information in a smaller population of schizophrenia and schizoaffective disorder 3.4 | Schizophrenia and bipolar disorder patients 40 42 patients while Raffard et al suggested that cognitive therapy, retain capacity for treatment related decision making by enhancing patients' self-reflectiveness and considering alterna- after hospital admission tive explanations, could lead to better capacity to consent to treat- ment in schizophrenia.42 On the other hand, Kennedy et al31 Spencer et al (2018) found that 31% (95% CI: 21%-43%) of 84 unwell found that the amount of information to be disclosed to psychosis psychiatric inpatients admitted for the assessment and/or treatment patients' needs to be balanced. Giving too much extra information of schizophrenia and related psychoses had capacity to make deci- when obtaining consent for treatment for a psychotic illness may sions about treatments, although different symptoms, such as PONS ET AL. &C?JRFѥ1AGCLACѥ0CNMPRQ 9 of 13 F I G U R E 1 Flow diagram of the literature selection process delusions and hallucinations had different effects on decision-making applied to assess mental capacity following the Ireland's Assisted abilities. Ganzini et al29 reported that 42% of veterans with schizo- Decision-Making (Capacity) Act 2015 closely correlated. Thus, phrenia admitted for nonpsychiatric hospitalizations, such as infection, patients who lacked mental capacity according to the legislation cardiac disease or altered mental status that required assessing the scored significantly lower on all subscales of the MacCAT-T than psychotropic medication lacked decision-making capacity mostly sec- patients who had mental capacity.26 ondary to delirium; 58% of these patients retained decision-making capacity while in hospital.29 Cairns et al22 studied the capacity to make treatment decisions 3.5 | Involuntary admission, or involuntary soon after admission to hospital in a total of 112 schizophrenia, treatment, compromises decisional capacity in schizoaffective disorder, and other psychotic disorder patients. More schizophrenia and bipolar disorder patients than half (56.2%) remained capable of making treatment-related deci- sions, and decisional capacity was mostly present (90.5%) among Mandarelli et al32 compared the capacity ratings of patients treated 19 those who had been voluntarily admitted. Bilanakis et al found that voluntarily and involuntarily in a psychiatric acute care unit to consent the capacity for decision making was compromised during the first to psychiatric treatment. Patients treated voluntarily scored consider- 72 hours of admission in 21 patients with schizophrenia of whom ably better than those treated involuntarily in all MacCAT-T subscales 62% had been involuntarily admitted into a psychiatric ward in a gen- and were more able than those admitted involuntarily to understand, eral hospital. In both studies, decisional capacity was related to posi- appreciate, and reason about their own clinical condition, the risks, tive and negative psychiatric symptomatology while the phase of the and benefits of treatment, and to express a clear treatment choice.32 disorder (mania, hypomania, delusional) temporarily and variably A subsequent study by the same authors found that 22% (n = 29) of 2219 impaired decisional capacity. 131 patients with an acute psychotic episode involuntarily hospital- Likewise, a study conducted in Ireland which included both volun- ized and treated also had high treatment decision-making capacity, tarily and involuntarily admitted individuals with any mental disorder defined as scoring above 75% of the maxima in all four MacCAT-T found that 1.9% of participants lacked mental capacity for treatment subscales.33 Likewise, a study by Brown et al21 reported that 67.1% decisions; 50.7% had partial mental capacity; and 47.4% had full men- (95% CI: 63.1-71.0) of schizophrenia; 60.8% (95% CI: 54.9-66.7) of tal capacity.24 With respect to the ability to understand information schizoaffective/other psychotic and 69.0% (95% CI: 63.0-75.0) of about diagnosis and treatment, 10.7% of participants lacked this abil- bipolar disorder patients were assessed to lack capacity at psychiatric ity; 38.6% had partial ability; and 50.7% had full ability. Greater men- admission according to the Mental Capacity Act 2005 criteria. About tal capacity was significantly associated with voluntary admission 30% to 40% of these patients remained capable of decision making. status, Irish ethnicity, being in employment and of younger age. The Incapacity was more frequent among those admitted involuntarily.21 authors also found that voluntary admission status, being employed, Similarly, Rutledge et al43 reported that compulsory detained patients having a primary diagnosis other than schizophrenia or a related disor- with psychosis and incapable of making a treatment choice scored sig- der, and younger age accounted together for only 44.4% of the vari- nificantly worse in all rating scales, including the MacCAT-T, ance in mental capacity implying that other unexplored factors MacCAT-FP, PANSS, and the Global Assessment of Functioning contributed to decisional capacity.25 The clinical and legal criteria (GAF).43 10 of 13 &C?JRFѥ1AGCLACѥ0CNMPRQ PONS ET AL. 3.6 | Schizophrenia and bipolar disorder patients 4 | DI SCU SSION regain capacity for treatment related decision making after impairments while in hospital This review provides data on the capacity of schizophrenia and bipolar disorder patients for making autonomous decisions regarding the In the United Kingdom, Owen and collaborators conducted a series treatment of their disease. The proportion of participants in the stud- of studies to assess decision-making capacity in psychiatric inpa- ies reviewed who had capacity for making appropriate treatment deci- tients admitted to acute psychiatric wards. They found that the sions went beyond 70% among outpatients as indicated by their capacity to make treatment related decisions was compromised in competent understanding of treatment options, and decisional capac- up to 60% (95% CI: 55%-65%) in people admitted involuntarily ity was satisfactorily regained following treatment among hospital suggesting that 40% of these patients retained decisional capacity inpatients. Similar to patients with a nonpsychiatric condition like dia- 35 despite the stressful situation they were experiencing. Maniac betes, obesity or old age, schizophrenia and bipolar disorder persons episodes among bipolar disorder patients and the burden of psy- in the community were able to take part in assessments in a way that chopathological symptoms overall were strongly associated with reflected their own choices.48 Elements such as cognitive capacity, incapacity.36 Among those labeled as incapable at admission, 83% physical functioning, and level of education all contribute to decision- regained capacity to make treatment decisions after 1 month of making performance among psychiatric and nonpsychiatric patients, treatment37 and were able to retrospectively approve the decisions even after adjusting for diagnosis49.5051 These findings support the 38 made by psychiatrists on their behalf while impaired. Insight was overriding principle that schizophrenia or bipolar disorder patients found to be the best discriminator of the status of capacity among must be assumed to have capacity unless established otherwise, and 353638 psychotic inpatients. that they should not to be treated as unable to make a decision unless Dornan et al27 were also interested in quantifying the relationship all practicable steps to help them to do so have been taken without of decisional capacity to time. They used competence assessment success.52 tools, and rating scales for symptoms and global function in 37 inpa- More than 30% of inpatients with severe symptoms and long- tients, all with psychosis in a secure psychiatric hospital. Patients were standing disease was able to make treatment decisions soon after interviewed twice a mean of 323 days apart (median 176 days; range hospital admission in the publications reviewed. Although in the 17-1221 days). The number judged by treating psychiatrists to lack moment of admission, capacity impairments could limit autonomous capacity either to make a treatment choice or to plead in court fell critical decisions such as voluntary or involuntary admission or from 35% to 8% demonstrating that there was an improvement in changes in the treatment plan, by the time of hospital discharge, the capacity scores with time. There also was a strong relationship majority of schizophrenia or bipolar disorder patients had recovered between the clinicians' assessment of capacity and structured rating decision-making capacity. In this sense, there is evidence that sub- scales.27 stantiates the notion that even symptomatic bipolar disorder or 28 In 56 patients with psychosis, Fernandez et al studied their schizophrenia patients can be capable of distinguishing, describing, capacity to consent to treatment after involuntary hospital admission and evaluating their own health states.5354 and at 6- and 12-weeks following treatment. At the time of admission, The review also shows that, in mental health research, the capac- 62.5% had decisional capacity and 37.5% of participants lacked it; this ity for decision making is usually assessed according to the four tradi- latter figure dropped to 17.9% at 6 weeks and to 5.4% at 12 weeks of tional criteria of understanding, appreciation, reasoning, and treatment, showing that decision-making capacity improved over expressing a choice9 and that each of these elements contributes in 12 weeks of treatment.28 different ways to the person's decisional capacity. The effects of Wong et al46 interviewed 81 schizophrenia patients before their impairments in schizophrenia and bipolar disorder on patients' deci- discharge from hospital after a psychotic relapse to examine their sion-making and functional capacity may vary in intensity depending decisions on whether to take maintenance treatment. The authors on the individual, the phase of the illness, the prevailing psychotic found that 79% of participants had scores above 4 on understanding, symptoms, cognitive function, the moment in time, and the type of 74.1% above 6 on reasoning and 82.7% above 3 on the appreciation decision to be made.55 subscales of the MacCAT-T, indicating that most patients had the abil- The understanding of the disease- and treatment-related informa- ity to make decisions with regard to following the treatment rec- tion is commonly impaired in schizophrenia and bipolar disorder ommended at discharge from hospital.46 patients, but this does not mean that these individuals are incapable of making their own decisions or that they are unable to adequately perform treatment-related tasks.56 3.7 | Quality appraisal of publications The level of understanding can be easily improved by adopting measures such as repeating and redisclosing the missed information According to the Newcastle-Ottawa Scale criteria for assessing the or using enhanced information procedures.57 Research into functional methodological quality of studies, most of the publications reviewed capacity shows that schizophrenia patients can normally manage med- obtained five to eight stars out of nine and were therefore judged to ications and keep prescription refills over time.58 These findings rein- 47 be of high quality. force the notion that capacity is a complex, dynamic, and PONS ET AL. &C?JRFѥ1AGCLACѥ0CNMPRQ 11 of 13 multifactorial neurocognitive concept that should be properly conducted in individuals while in the community. Despite the assessed and re-assessed by the clinician familiar with the patient or greater burden of illness in the studied populations, the evidence with the nature of the disease. They also show that, when present, shows that schizophrenia and bipolar disorder individuals most the loss of the capacity for decision making is temporary and the abil- often have capacity to make decisions about their medical treat- ity recovers over time in the vast majority of patients with schizophre- ment, and that the proportion of individuals with no treatment nia or bipolar disorder.59 Therefore, capacity assessments should decisional capacity is actually very small. Therefore, the majority of primarily be undertaken not to judge whether people are capable or patients with schizophrenia or bipolar disorder are capable of treat- not to decide autonomously, but rather to assess what kind of support ment related decision making and should be involved in decisions people with decision-making impairments need in order to be about the care of their health. involved in decision making, and thus to promote their autonomy.60 The psychiatrist's clinical judgment is fundamental in assessing FUNDING the decision-making capacity of mentally disordered patients21 .22 Ferrer funded the development of the study and the writing of the The currently available scales are very limited and are poorly suited manuscript with an unrestricted grant. for evaluating this capacity. In this context, a specific assessment of capacity should be conducted together with the standard routine CONFLIC T OF INT ER E ST medical and psychopathological evaluation in any patient in a crisis The authors declare that they have no conflict of interest. episode and when preparing a shared contract or a joint care plan. Healthcare practitioners should remember that the limitation of AUTHOR CONTRIBU TIONS capacity is temporary, and a reassessment should therefore be per- Conceptualization: Alfredo Calcedo-Barba, Enric Vincens Pons, formed within a reasonable period of time. Silvia Paz The limitations of the review are related to the type of the studies Formal Analysis: Alfredo Calcedo-Barba, Enric Vincens Pons, Luis included and the fact that only publications in English existing in four Salvador-Carulla, Bruno Paccardi, Silvia Paz electronic sources were accepted. Although the review is comprehen- Funding Acquisition: Alfredo Calcedo-Barba, Enric Vincens Pons sive, relevant studies published in other languages and indexed in Writing – review and editing: Silvia Paz, Alfredo Calcedo-Barba, Enric other databases may have not been identified. Furthermore, papers Vincens Pons, Luis Salvador-Carulla, Bruno Paccardi, Thomas Messer, on interventions for improving decisional capacity were excluded Scott L. Zeller which can miss some potential eligible studies that might report the Writing – original draft: Silvia Paz capacity of schizophrenia or bipolar disorder individuals before the All authors read and approved the final manuscript. intervention. Most reviewed research was conducted in small Alfredo Calcedo-Barba had full access to all of the data in this populations from individual services making results less representative study and takes complete responsibility for the integrity of the data of all patterns of care at regional or country level. The internal consis- and the accuracy of the data analysis. tency of the studies may be low due to their observational nature, although they are highly reflective of everyday medical practice with a TR AN SPAR ENC Y STATEMENT high external validity. Alfredo Calcedo-Barba affirms that this manuscriptis an honest, accu- Overall, common methods and more robust designs are needed rate, and transparent account of the study being reported; that no to advance knowledge in this highly relevant topic. Future studies important aspects of the study have been omitted; and that any dis- should account for generalisability and allow international compari- crepancies from the study as planned (and, if relevant, registered) sons taking into account differing requirements of capacity for differ- have been explained. ent healthcare decisions, such as crisis management, hospitalisation, containment, and long-term treatment plans. Also, cultural variations, DATA AVAILABILITY STAT EMEN T the disparity across mental health conditions and diversity among The data that support the findings of this study are available from the legal frameworks should be considered in future research. Similarly, corresponding author upon reasonable request. more research is needed in relation to the assessment of patients' capacity in the emergency room, the comparative analysis of the psy- OR CID chometric properties and usability of screening questionnaires for the Silvia Paz https://orcid.org/0000-0001-5354-1087 assessment of capacity in different contexts and for different pur- poses, and guidelines for the assessment of capacity in severe mental RE FE RE NCE S disorders beyond the extended use of MacCAT-T. and in medical 1. Entwistle VA, Carter SM, Cribb A, McCaffery K. Supporting patient conditions.61 autonomy: the importance of clinician-patient relationships. 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