Tim Luckett1, Marcus Sellars2, Jennifer Tieman3, Carol A Pollock4, William Silvester2, Phyllis N Butow5, Karen M Detering2, Frank Brennan6, Josephine M Clayton7. 1. Improving Palliative Care through Clinical Trials, New South Wales, Australia; Faculty of Health, University of Technology Sydney, Sydney, Australia; South Western Sydney Clinical School, University of New South Wales, Sydney, Australia. 2. Respecting Patient Choices, Austin Health, Melbourne, Australia. 3. CareSearch, Flinders University, South Australia, Australia. 4. Sydney Medical School, University of Sydney, Sydney, Australia; Department of Renal Medicine, Royal North Shore Hospital, Sydney, Australia. 5. School of Psychology, University of Sydney, Sydney, Australia. 6. Department of Renal Medicine and Palliative Care, St George Hospital, Sydney, Australia. 7. Improving Palliative Care through Clinical Trials, New South Wales, Australia; Sydney Medical School, University of Sydney, Sydney, Australia; HammondCare Palliative & Supportive Care Service, Greenwich Hospital, Sydney, Australia. Electronic address: josephine.clayton@sydney.edu.au.
Abstract
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.
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.
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