PARKINSON DISEASE AT THE END OF LIFE: CAREGIVER PERSPECTIVES

Abstract

Mortality associated with Parkinson disease (PD) is two to five times that of age- and sex-matched controls, and PD is 14 among the leading 15 causes of death in the United States.1-3 Most PD texts from the last decade contain no information on the final months of life with PD.4-6 Quality end-of-life care for patients with PD is impeded by scant information about the prevalence and severity of disabling psychological and physical symptoms and decision making about goals of care. ### Methods. We interviewed 47 family caregivers of patients with idiopathic PD evaluated at the Oregon Health and Science University and Portland Veterans Affairs Medical Center, who died from 6 to 53 months before the interview. Caregivers rated patient physical and psychological symptoms in severity, frequency, and degree to which the symptom bothered or distressed the patient in the final month of life, reported the use of health care proxies and health care services, overall goals of medical care, and degree to which patients’ wishes were respected. …