Advance care planning in nursing homes – A mixed methods study of a complex intervention using a whole-ward approach

Abstract

Advance care planning assists people to share their personal values, life goals, and preferences for future medical care before it is too late. When making end-of-life decisions in nursing homes, the patient is often no longer capable of participating in any meaningful communication because of severe somatic illness, cognitive impairment, or lack of competence to consent. Thus, advance care planning is essential to secure patient participation in the decision-making processes at the end of their life. Communication about end-of-life care preferences should start while the patient can still participate. However, many nursing home patients who are able and want to participate in advance care planning do not get the opportunity. Decisions are often based on the preferences of the next of kin or the professionals’ judgment about what is best for the patient and this neglects the individual patient’s preferences and needs. Involvement of patients with cognitive impairment and their next-of-kin in advance care planning has not been well studied. This thesis includes research from the project “End of Life Communication in Nursing Homes: Patient Preferences and Participation”. The overall aim of this project was to improve patient participation in the decision-making processes in nursing homes. It consisted of three parts: a systematic literature review of implementation and research strategies of advance care planning in nursing homes; mapping of advance care planning in Norwegian nursing homes; and an implementation study that included a cluster-randomized clinical trial. This thesis is concerned with the final part of the project. Advance care planning was the clinical intervention. The whole-ward approach to advance care planning implementation focused on involving patients as much as possible, including patients with cognitive impairment. The next-of-kin was also encouraged to participate and to support the patient, and regular staff led the advance care planning conversations. Finally, the whole-ward approach emphasized advance care planning as a process that includes both formal and informal conversations and stressed voluntary participation. The mixed methods research design included chart reviews, qualitative interviews, and observation of advance care planning. Article 1 is a protocol article. Article 2 reports the findings from the cluster-randomized trial in eight nursing home wards. Among the findings was an increase in patient participation in conversations about end-of-life treatment. This also applied to patients with cognitive impairment. Additionally, the patient’s own expressions of future preferences, hopes, and worries increased. Article 3 is an observational study of advance care planning conversations. Patients with cognitive impairment were active participants. They relayed relevant information, but they sometimes needed support from their next-of-kin. Article 4 reports information from interviews with participants in the observed conversations. Participants appreciated that the advance care planning was patient-focused and thus was building trust relationships between patient/next-of-kin and healthcare personnel. Despite most patients being reluctant to focus on end-of-life issues, the healthcare personnel viewed advance care planning as helpful for decision-making and they left openings for further important follow-up conversations. This thesis indicates that implementation of advance care planning using a whole-ward approach can improve nursing home patients’ participation in important decisions about their health, life, and death. Additionally, this approach to advance care planning implementation can promote more patient-focused health and care services that acknowledge psychosocial and existential needs. Cognitive impairment represented a challenge and indicates that advance care planning may profit from commencing before nursing home admission. However, patients with cognitive impairment participated actively and relayed relevant information for future decision-making, and sometimes the patients received support from their next-of-kin, which enabled them to participate in the discussions. This thesis indicates that advance care planning may lay an important foundation for respecting patient autonomy and person-centered care, which extends to the nursing home context.