Assessing capacity to participate in discussions of advance directives in nursing homes: findings from a study of the Patient Self Determination Act

Abstract

Objective: To better understand the implementation of the Patient Self-Determination Act (PSDA) in long-term care, with a focus on the informing process as it affects advance directives.

Design: Retrospective cohort study of nursing home admissions, using medical record reviews, and a companion qualitative survey using key informant interviews.

Setting: Eleven nursing homes in Connecticut.

Participants: A total of 600 residents randomly selected from six randomly chosen nursing homes and 19 key informants selected from five purposely sampled nursing homes in Connecticut.

Measures: Institutional compliance with the PSDA requirement to provide written information about advance directives at admission and aspects of the informing process, including to whom the information is given.

Results: Compliance with the PSDA requirement to provide information at admission is high (90.7 of admissions in the post-PSDA cohort received information within 1 week of admission). However, in nearly 70% of admissions in which information was provided, someone other than the residents received the information. Staff often cited the resident's cognitive impairment as a reason for excluding residents from this informing process. However, even among those residents judged to be alert and oriented at admission, someone other than the resident received the information 47.7% of the time.

Conclusions: Substantial numbers of residents may be inappropriately excluded from participating in discussions because of difficulties in determining decisional capacity to discuss future treatment wishes. The research highlights the difficulties of enhancing resident participation and autonomy in long-term care through procedural regulations such as the PSDA. More reliable methods of determining resident decisional capacity are needed to integrate the full intent of the PSDA into clinical practice in long-term care.