Nursing home residents with cognitive impairment can participate in advance care planning: A qualitative study

Abstract

Aims: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges. Design: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a “whole‐ward” approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central. Methods: From observed and audio‐recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines. Results: Residents actively relayed their preferences regarding healthcare and end‐of‐life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident‐focused. However, involving residents was also challenging, findings included: residents’ preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end‐of‐life care. Conclusions: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision‐making can improve communication and resident involvement, reinforcing a relational understanding of autonomy. Impact: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person‐centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.