Nursing home and end-of-life care in Parkinson disease

Objective: To examine long-term care facility (LTCF or nursing home) use and end-of-life care for individuals with Parkinson disease (PD). Methods: In this nationwide retrospective cohort study, we compared LTCF and hospice utilization among Medicare beneficiaries diagnosed with PD by demographic, clinical, and physician characteristics. We also examined the impact of outpatient neurologist care for institutionalized patients with PD on end-of-life care. Results: We identified 469,055 individuals with PD who received Medicare benefits in 2002. Nearly 25% (more than 100,000 in total) resided in an LTCF. Women with PD had greater odds of nursing facility residence (adjusted odds ratio [AOR] 1.34, 95% confidence interval [CI] 1.30-1.38) compared with men. Black individuals with PD were 34% more likely than white individuals to reside in an LTCF (AOR 1.34, 95% CI 1.30-1.38), contrary to the race patterns typically observed for LTCF use. Hip fracture (AOR 2.10, 95% CI 2.04-2.15) and dementia (AOR 4.06, 95% CI 4.00-4.12) were the strongest clinical predictors of LTCF placement. Only 33% (n 38,334) of nursing home residents with PD had outpatient neurologist care. Eighty-four percent (n 80,877) of LTCF residents with PD died by December 31, 2005. Hospice utilization varied little by race and sex. LTCF residents who had outpatient neurologist care were twice as likely to utilize hospice services before death (AOR 2.35, 95% CI 2.24-2.47). Conclusions and relevance: A large proportion of the Medicare PD population resides in an LTCF. There is substantial unmet need for palliative care in the PD population. Increased efforts to provide specialist care to dependent individuals with PD may improve end-of-life care.