Maya Katz, Assistant Professor of Neurology at the UCSF Movement Disorders and Neuromodulation Center, led a works-in-progress session on her research about the Parkinson’s disease (PD) “mortality myth” and the benefits of incorporating palliative care into PD management. Joined by social workers, neurologists, and palliative care specialists, we voiced our perspectives on misconceptions about PD mortality and best practices for end-of-life conversations.
The PD “mortality myth” refers to the misleading, yet ubiquitous characterization of PD as a chronic disease that does not effect life expectancy, rather than as a terminal, neurodegenerative illness. We recognized the unfortunate perpetuation of this myth within cultural and clinical settings alike, manifesting in inaccurate news media coverage and inadequate end-of-life planning for PD patients. Cause-of-death statistics show that that PD side-effects, such as aspiration pneumonia and sudden falls, account for the majority of PD deaths. We then discussed the myth’s positive-feedback-loop quality, its influence on the production of information that further supports its validity. Informed by anecdotes of frustrated caregivers and the disproportionately high rate of PD hospital deaths, we advocated for palliative care strategies as a means of reducing caregiver burden and improving patient quality of life. Additionally, we called for a patient-centered approach to diagnosis delivery, as well as ongoing conversations about prognosis that address disease heterogeneity, cognitive decline, and potential comorbidities.