Perceived Life Expectancy Among Dialysis Recipients: A Scoping Review

RATIONALE & OBJECTIVE: Greater prognostic understanding is associated with higher quality care at the end of life. We undertook a scoping review to explore how long dialysis recipients expect to live. STUDY DESIGN: Scoping Review SETTING & STUDY POPULATIONS: People with kidney failure over 18 years old. SEARCH STRATEGY & SOURCES: Studies were identified by searching Medline, Embase, APA PsycINFO, HMIC, and ProQuest database for terms related to “life expectancy”, “self-estimated”, and “end stage kidney disease”. DATA EXTRACTION: Search strategies reported 349 unique, potentially eligible studies, with 8 studies meeting the inclusion criteria after screening. RESULTS: Significant mismatches between dialysis recipients and their health care provider’s estimations of prognosis were reported, with patients predicting significantly higher life expectancies than health care professionals and almost no agreement between patient and nephrologist’s estimates of 1-year survival. Documented cognitive impairment did not affect 1-year or 5-year prognosis estimates, nor did gender, age, time on dialysis, or discussing perceived life expectancy. Dialysis recipients who thought they were on the transplant list or who self-identified as African American reported higher perceived life expectancy, whereas people who were 75 years or older, or with fair or poor self-reported health status reported a lower perceived life expectancy. Those with a lower perceived life expectancy preferred care focusing on relieving pain and discomfort, whereas people who thought they had a higher chance of survival were significantly more likely to prefer life-extending care. LIMITATIONS: There is a marked paucity of research in this area, with most studies conducted in North American cohorts. CONCLUSIONS: Optimistic patient prognostic expectations persist in dialysis recipients. Given the effects of perceived life expectancy on treatment choices and subsequent quality of life, it is important that transparent discussions regarding prognosis are conducted with people receiving dialysis and their families. PLAIN-LANGUAGE SUMMARY: Understanding illness severity and prognosis allows people to make decisions and prioritize areas of their lives that are important to them. We undertook a scoping review to explore how long dialysis recipients expect to live. We found significant mismatches between the perceived life expectancy of people treated with dialysis and their health care providers. Perceived life expectancy influenced treatment choices; thus, those who thought they would die sooner prioritized care focusing on relieving pain and discomfort. Those who thought they had a higher chance of survival were more likely to prefer life-extending care (with potential effects on quality of life). It is important to have frank discussions about prognosis with people receiving dialysis, to empower individuals and help them make informed decisions about their care.