Background
People with chronic kidney disease and end-stage kidney disease (ESKD) have irreversible kidney damage and require renal replacement therapy. In developed countries, haemodialysis has become the most common treatment for people with ESKD. Despite its life-saving potential, haemodialysis can be a significant physical and psychological burden to patients. Advance care planning is the process of planning for a person’s future health and personal care decisions in terms of level of healthcare and quality of life the person would want, should for any reason, the person becomes unable to participate in decision-making. Advance care goals can change over time and advance care planning assists in addressing these changes and readdress care goals over time. This helps to ensure that individual choices are respected in future medical treatment in an event where the person cannot communicate or make decisions.
We wanted to find out if advance care planning can improve health outcomes among people with ESKD in terms of use of resuscitation measures such as cardiopulmonary resuscitation, and withdrawal from dialysis. Additionally, we wanted to find out whether patient wishes were followed in the end of life period.
Study characteristics
We searched the literature up to June 2016 and found two studies (three reports) that involved 337 patients which investigated use of patient-centred advanced care planning (PC-ACP) and peer mentoring interventions.
Key results
Neither study addressed our questions concerning use of life-prolonging treatments such as resuscitation, death in hospital or withdrawal from dialysis. It remains uncertain if advance care planning can improve health outcomes among ESKD patients. More research is required to better inform use of PC-ACP for people receiving haemodialysis treatment.
We found sparse data that were assessed at suboptimal quality and therefore we were unable to formulate conclusions about whether advance care planning can influence numbers of hospital admissions and treatment required by people with ESKD, or if patients' advance care directives were followed at end-of-life. Further well designed and adequately powered RCTs are needed to better inform patient and clinical decision-making about advance care planning and advance directives among people with ESKD who are undergoing dialysis.
End-stage kidney disease (ESKD) is a chronic, debilitative and progressive illness that may need interventions such as dialysis, transplantation, dietary and fluid restrictions. Most patients with ESKD will require renal replacement therapy, such as kidney transplantation or maintenance dialysis. Advance care planning traditionally encompass instructions via living wills, and concern patient preferences about interventions such as cardiopulmonary resuscitation and feeding tubes, or circumstances around assigning surrogate decision makers. Most people undergoing haemodialysis are not aware of advance care planning and few patients formalise their wishes as advance directives and of those who do, many do not discuss their decisions with a physician. Advance care planning involves planning for future healthcare decisions and preferences of the patient in advance while comprehension is intact. It is an essential part of good palliative care that likely improves the lives and deaths of haemodialysis patients.
The objective of this review was to determine whether advance care planning in haemodialysis patients, compared with no or less structured forms of advance care planning, can result in fewer hospital admissions or less use of treatments with life-prolonging or curative intent, and if patient's wishes were followed at end-of-life.
We searched the Cochrane Kidney and Transplant Specialised Register to 27 June 2016 through contact with the Information Specialist using search terms relevant to this review. We also searched the Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Social Work Abstracts (OvidSP).
All randomised controlled trials (RCTs) and quasi-RCTs (RCTs in which allocation to treatment was obtained by alternation, use of alternate medical records, date of birth or other predictable methods) looking at advance care planning versus no form of advance care planning in haemodialysis patients was considered for inclusion without language restriction.
Data extraction was carried out independently by two authors using standard data extraction forms. Studies reported in non-English language journals were translated before assessment. Where more than one publication of one study exists, reports were grouped together and the publication with the most complete data was used in the analyses. Where relevant outcomes are only published in earlier versions these data were used. Any discrepancies between published versions were highlighted. Non-randomised controlled studies were excluded.
We included two studies (three reports) that involved 337 participants which investigated advance care planning for people with ESKD. Neither of the included studies reported outcomes relevant to this review. Study quality was assessed as suboptimal.