The Attitudes of Progressive Neurological Disease Patients and Their Family Members to End of Life Care: A Cross-Sectional Study

The objective was to identify the attitudes of progressive neurological disease (PND) patients and their family members regarding end-of-life care, and their worries about dying. The sample included 327 participants. The Attitudes of Patients with PND to End-of-Life Care questionnaire was used to collect the data. Statistically significant differences in the assessment of attitudes towards end-of-life care between patients and family members were identified (p < 0.001). Family members more frequently favored patients being kept alive at any cost; patients more commonly wished to have their end of life under control. Respondents most frequently deferred to doctors when it came to decisions on treatment to keep patients alive. However, both patients and family members wanted patients to be able to decide on their treatment by leaving a written record of their previously stated wishes. The demands of patients and their families regarding end-of-life care should be documented in individual care plans.

Automated summary

The study identified differences in attitudes towards end-of-life care between patients with progressive neurological diseases and their family members. Family members tended to favor keeping patients alive at any cost, while patients preferred to have control over their end-of-life. Doctors were the most frequently consulted decision-makers, and both patients and family members desired written records to guide treatment decisions.