Conceptualizing and Counting Discretionary Utilization in the Final 100 Days of Life: A Scoping Review

Abstract

Context: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end of life (DIAL), an indicator of quality care.

Objective: The objectives of this study were to examine how DIALs have been operationally defined and identify areas where evidence is biased or inadequate to inform practice.

Methods: We conducted a scoping review of the English language literature published from 1/1/04 to 6/30/17. Articles were eligible if they reported data on ≥2 DIALs within 100 days of the deaths of adults aged ≥18 years. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases and influences were explored.

Results: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly focused on cancer care (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., intensive care unit admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of research design, professional norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half of the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs.

Conclusion: Unwarranted variation in DIAL assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIAL assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.

Keywords: Aggressive care; ICU; aging; biomedical ethics; dying; end-of-life care; health care quality; hospice; life-prolonging; palliative care.

Figure 1. PRISMA Flow Diagram for Scoping Articles

^aThis number and subsequent numbers are approximations, as traditional (backward search, forward search) and nontraditional (e.g. the Google “recommended articles” function) methods were used to identify additional records, and the nontraditional methods were not tallied. ^bSix articles reported data using more than one sample and research design; the total number of samples was 260. See text for details.

Figure 2. Growth of the Literature on DIALs, 2004–2016

Note. There was a notable surge in interest in this topic in 2013, and was not confined to palliative care (PC) and oncology (Onc) journals. The review included articles published before July 1 2017; for consistency, 2017 data are not shown.

Figure 3. Longitudinal variation in the percentage of publications reporting each DIAL

Note. Publications were ordered chronologically, and the z-test for proportions was used to compare the frequency with which each DIAL was reported in the early studies (n=84) versus the most recent studies (n=91). Relative to the early studies, reporting on inpatient admissions (47.6% vs. 65.9%, P=.016), palliative care (29.8% vs. 48.4%, P=.015), and radiotherapy (4.8% vs. 18.7%, P=.005) increased in recent studies, whereas reporting on ICU stays (66.7% vs. 47.3%, P=.008) and ventilation/intubation decreased (40.5% vs. 16.5%, P<.001)