Effects of a nurse-led post-discharge advance care planning programme for community-dwelling patients nearing the end of life and their family members : a randomised controlled trial

Abstract

Background: Although evidence increasingly demonstrates the effects of advance care planning, the relevant studies are of questionable quality, and lack consensus regarding when and with whom to initiate the conversation. Objective: To examine the effects of a structured, nurse-led post-discharge advance care planning programme on congruence between the end-of-life care preferences of the patient and family members, decisional conflicts and the documentation of care preferences. Design: A two-arm parallel-group randomised controlled trial. Participants: A total of 230 dyads comprising community-dwelling patients screened by the Gold Standards Framework Prognostic Indicator Guidance and their designated family members. Methods: Patients in the experimental group participated in a structured advance care planning programme administered by a trained nurse during three weekly home visits following hospital discharge. In contrast, the post-discharge home visits provided to the control group focused on self-care management as attention control. The study outcomes were the dyadic congruence regarding end-of-life care preferences, the patients’ level of decisional conflict regarding end-of-life decision-making and the documentation of these preferences at baseline and 1 and 6 months after enrolment. Generalised estimating equation models were used to compare changes in the outcomes between the groups across time. Results: At baseline, few participants had ever heard of advance directives (12/460, 2.6%) and few patients had ever discussed end-of-life issues with family members (34/230, 14.8%). After six months, the experimental group exhibited a greater increase in dyadic congruence regarding various end-of-life care preferences than the control group (Ps < 0.04). The experimental group also exhibited a greater improvement in decisional conflict at 6 months relative to the control group (P = 0.003). However, the groups did not differ significantly in terms of changes in any outcomes after one month. The experimental group had significantly higher rates of completion of advance directives and electronic medical record documentation of do-not-attempt cardiopulmonary resuscitation orders than the control group. Conclusions: This study showed that a nurse-led structured advance care planning programme could effectively improve dyadic congruence regarding end-of-life care preferences, reduce patients’ decisional conflict and increase the documentation of care preferences. The findings underscored the importance of supporting nurses to introduce advance care planning at an earlier time that enable patients with sufficient time to contemplate end-of-life issues, empower patients to deliberate their choices and engage patients and their family members in open discussion.