“I Don’t Want a ‘Program’” A Case-Based Approach to Ethical Issues in First-Episode Psychosis Services
Syd Russell Leed, Yveton Isnor, Saipriya Iyer, Michael Ryan, Drew Madore
Cambridge Health Alliance, Recovery in Shared Experiences (RISE) First Episode Psychosis Program, Cambridge, MA
Background: People experiencing a first episode of psychosis (FEP) are vulnerable to ethical issues in clinical care and research, but FEP is an under-researched area of bioethics with significant implications for patients’ rights.
Methods: The authors draw on existing ethics literature, clinical experience in a coordinated specialty care program within a safety net hospital, and their diverse professional backgrounds. They describe four categories of ethical issues in FEP care using anonymized scenarios.
Areas of exploration: Noncoercive methods in treatment. Systems of psychosis treatments often include some degree of coercion, from involuntary hospitalization to lack of access to psychosocial interventions chosen freely by the patient. Example scenario: a patient’s psychiatric advance directive is not recognized by his treaters. Cultural responsiveness. Biomedical models localize psychosis to the individual. Insistence on a single explanatory frame can alienate patients, delay appropriate care, and weaken team engagement with patients’ community members. Example scenario: a recent immigrant is misdiagnosed with schizophrenia after expressing culturally-normative beliefs. Patient privacy and family involvement. Family engagement is important to FEP programming and, ideally, can be a healing experience for families and communities. However, it also raises issues of patient autonomy and provider nonmaleficence. Example scenario: a patient discloses their parents are physically abusive. Patient-centered outcomes measurement. FEP program evaluation typically prioritizes standardized measurements of individual symptom burden. There is limited research on qualitative outcomes that may be important to affected communities, such as post-traumatic growth and self-determination. Example scenario: a study on the prevalence of disruptive behaviors in an FEP population does not evaluate participants’ perspectives on conflict.
Conclusions: The authors identify four core areas of potential future bioethics research and evaluation: coercive methods in treatment, cultural responsiveness, patient privacy and family involvement, and outcomes measurement. These areas are guided by professional values of autonomy, nonmaleficence, beneficence, and justice.