What Is the Capacity of Individuals with Schizophrenia and Bipolar Disorder to Make Healthcare Decisions? An Exploratory Study of the Views of Patients, Psychiatrists, and Family Caregivers—A Survey on Decisional Capacity in Mental Health

Abstract

Background: Research on the decisional capacity of schizophrenia and bipolar disorder patients mostly reflects the hospital context. Aim: To describe the views of patients, psychiatrists, and caregivers on the capacity of individuals with schizophrenia and bipolar disorder to make everyday decisions on their care related to their illness. Methods: A survey was conducted among schizophrenia and bipolar disorder patients, psychiatrists, and caregivers (June 2019 to January 2020; seven countries). A questionnaire was emailed to members of the Global Alliance of Mental Illness of Advocacy Network—Europe (GAMIAN; patients) and the European Federation of Families of People with Mental Illness (EUFAMI; caregivers) and to psychiatrists who voluntarily agreed to participate. Questions referred to patients’ involvement and capacity for healthcare decision making, and to barriers to and opportunities for autonomous decision making. Frequency, agreement, and importance were rated on Likert scales. Descriptive statistics were conducted. Results: 21 schizophrenia or bipolar disorder patients (52.3% female; mean age (years) ± SD: 50.71 ± 12.02), 11 psychiatrists (18.2% female), and 15 caregivers (86.6% female; 100% family related) participated in the survey. In total, 86% of patients felt frequently involved in decisions about everyday care and medications, and 91% of psychiatrists and 40% of caregivers perceived the same; 38% of patients felt frequently involved in decisions about the use of acute symptom medications, and 57% on care planning, and 55% and 82% of psychiatrists, and 40% and 53% of caregivers, respectively, believed the same; and 86% of patients, 91% of psychiatrists, and 47% of caregivers agreed on the capacity of schizophrenia or bipolar disorder patients to value the implications of taking medicines to prevent acute psychotic crises. Poor understanding and training are barriers, while advocacy and increasing interest in patients’ needs are opportunities for increasing autonomous decision making. Conclusions: Stakeholders concur that schizophrenia and bipolar disorder patients have the capacity to make everyday decisions around their care related to their illness, including acute symptom management. Barriers and opportunities exist to foster autonomous decisions among mental illness individuals.