Advance care planning with patients who have end-stage kidney disease: a systematic realist review

Abstract Context Patients with end-stage kidney disease have a high mortality rate and disease burden. Despite this, many do not speak with health care professionals about end-of-life issues. Advance care planning is recommended in this context but is complex and challenging. We carried out a realist review to identify factors affecting its implementation. Objectives The objectives of this study are 1) to identify implementation theories; 2) to identify factors that help or hinder implementation; and 3) to develop theory on how the intervention may work. Methods We carried out a systematic realist review, searching seven electronic databases: Medline, Embase, CINAHL, PsycINFO, Cochrane Library, Google Scholar, and ScienceDirect. Results Sixty-two papers were included in the review. Conclusion We identified two intervention stages—1) training for health care professionals that addresses concerns, optimizes skills, and clarifies processes and 2) use of documentation and processes that are simple, individually tailored, culturally appropriate, and involve surrogates. These processes work as patients develop trust in professionals, participate in discussions, and clarify values and beliefs about their condition. This leads to greater congruence between patients and surrogates; increased quality of communication between patients and professionals; and increased completion of advance directives. Advance care planning is hindered by lack of training; administrative complexities; pressures of routine care; patients overestimating life expectancy; and when patients, family, and/or clinical staff are reluctant to initiate discussions. It is more likely to succeed where organizations treat it as core business; when the process is culturally appropriate and takes account of patient perceptions; and when patients are willing to consider death and dying with suitably trained staff.