Operationalizing Burdensome Transitions Among Adults at the End of Life: A Scoping Review

Abstract

Context: Care transitions at the end of life are associated with reduced quality of life and negative health outcomes, yet up to half of patients in developed countries experience a transition within the last month of life. A variety of these transitions have been described as “burdensome” in the literature; however, there is currently no consensus on the definition of a burdensome transition. Objectives: The purpose of this review was to identify current definitions of “burdensome transitions” and develop a framework for classifying transitions as “burdensome” at the end of life. Methods: A search was conducted in databases including Embase, PubMed, Cochrane Database of Systematic Reviews, Cochrane Controlled Register of Trials, CINAHL, and PsychINFO for articles published in English between January 1, 2000 and September 28, 2019. Results: A total of 37 articles met inclusion criteria for this scoping review. Definitions of burdensome transitions were characterized by the following features: transition setting trajectory, number of transitions, temporal relationship to end of life, or quality of transitions. Conclusion: Definitions of burdensome transitions varied based on time before death, setting of cohorts, and study population. These definitions can be helpful in identifying and subsequently preventing unnecessary transitions at the end of life.