Objective:

Based on the growing prevalence of Parkinson’s disease (PD) and the importance of aligning end-of-life (EoL) care with patient preferences, we aimed to determine attitudes toward EoL care among persons with PD using the 27-item Attitudes of Older People to End-of-Life Issues (AOELI) questionnaire. 

Background:

PD is currently the 14th leading cause of death in the United States (US). In the EoL period, the majority of persons with PD in the US are hospitalized with high rates of intensive care, in-hospital death, and low rates of discharge to hospice care. Although these outcomes are considered markers of inappropriate EoL care quality and are often incongruent with patient care preferences, little is known about the influence of sex on attitudes toward hospice care.

Design/Methods:

Persons with PD aged 41-89 years completed the AOELI questionnaire after routine clinic visits at a movement disorders center. Questions were scored using a 5-point Likert scale. Preferred care was based on the selection of a 4 (agree) or 5 (strongly agree) in response to 3 questions on home, hospice, or hospital-based care. Individual responses were compared between men and women using Chi-square analyses. 

Results:

A total of 200 participants (110 men, 90 women, 54 non-White participants) completed the AOELI questionnaire. When asked about care preferences in the event of a serious illness with no hope of recovery, all participants preferred home care (76%) and hospice care (77%) to hospital-based care (17% and 14%, respectively). Women were also more likely than men (59% vs. 39%) to prefer hospice over routine home care (X2=8.72, p=.01). 

Conclusions:

While most persons with PD prefer to avoid hospitalization in the EoL period, hospice care preferences differ between men and women. These data suggest that aggressive EoL care is likely undesirable and current EoL care practices should be individualized.