Serious Illness Conversation in the Care of Atypical Parkinsonian Disorders: A Practical Guide for Neurology...

Compared to Parkinson's disease, atypical parkinsonian disorders (APD) are characterized by a more rapidly progressive course, often leading to profound disability. Effective communication between clinicians, patients, and care partners is essential to support patient-centered care and shared decision-making. However, most neurologists lack formal training in serious illness conversations (SIC).

To develop a practical SIC guide tailored to the needs of individuals with APD.

Members of the CurePSP Centers of Care Palliative Care Working Group, in collaboration with a SIC education expert (TC), developed a SIC guide for APD. A literature review was conducted, followed by online consensus-building rounds.

Applying core communication principles-such as active listening, pausing, naming and validating emotions, assessing understanding, and reframing-can foster alignment between clinicians, patients, and their care partners. Navigating the balance between maintaining hope and providing realistic, anticipatory guidance remains challenging but best achieved by honest, compassionate dialogue. Four practical guides were developed, addressing common and often challenging scenarios: delivering an APD diagnosis, eliciting patient goals in the context of changing clinical status, addressing safety concerns, and discussing quality of life and end-of-life considerations.

Patients and their care partners living with APD benefit greatly from individualized guidance, and honest, empathic communication is a vital part of patient-centered care. While existing SIC frameworks offer valuable foundations, further research is needed to optimize their adaptation for APD-identifying best timing, specific frameworks, relevant outcome measures, and education strategies to build team-wide competency.