Background: Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD).
Study design: We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods.
Setting & population: We focused on adults with a primary diagnosis of CKD in any setting.
Selection criteria for studies: We included studies of any design, quantitative or qualitative.
Interventions: ACP was defined as any formal means taken to ensure that health professionals and family members are aware of patients' wishes for care in the event they become too unwell to speak for themselves.
Outcomes: Measures of all kinds were considered of interest.
Results: 55 articles met criteria reporting on 51 discrete samples. All patient samples included people with CKD stage 5; 2 also included patients with stage 4. Seven interventions were tested; all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient and family outcomes in the form of improved well-being and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been used to inform interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis therapy separately from "aggressive" life-sustaining treatments (eg, ventilation).
Limitations: Although quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy.
Conclusions: Research on ACP in patients with CKD is limited, especially intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional, and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care.
Keywords: Chronic kidney disease (CKD); advance care planning (ACP); advance directives; decision making; end-of-life (EOL) care; palliative care; patient-centered care; renal failure; systematic integrative review.
Copyright © 2014 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.