Challenges to Ethically Managing Parkinson Disease: An Interview Study of Patient Perspectives

This study investigated the current ethical issues in relation to recognizing and managing Parkinson disease (PD) from the patient’s perspective.

Methods: Twelve patients living with PD who were from the medical school’s Patients as Educators program were recruited. Semistructured interviews were conducted to record patient experiences in order to identify potential ethical issues in relation to recognizing and managing PD. Thematic analysis was applied to the interview transcripts.

Results: Four key themes emerged from the interviews. These were information giving, coping, identity, and future medical treatment. These data indicate variable experiences in relation to communication between patient and health-care professional, better support for both planning end-of-life decisions and in coping with the disease’s impacts on their identity. Patients with PD also struggle with access to support services and support for main carer.

Implications: To ensure ethical practice in supporting patients with PD, these emerging themes need further investigation; and management guidelines relevant to PD must be informed by research in this area to ensure ethical care of patients with PD, their carers, and families.