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.

Anxiety, depression, and end‐of‐life care utilization in adults with metastatic cancer

“…Potential explanations may stem from a worsened patient‐physician relationship, weakened communication, or increased stress when not receiving treatment 13,24,25 . Chemotherapy, ICU visits, and inpatient hospitalizations are costly, 26 often viewed as indicators of lower quality care near death, 10 and may hinder family bereavement adjustment 27 . In sum, the present findings are unique in documenting a seemingly pervasive, negative impact of anxiety disorders on receipt of end‐of‐life care.…”

“…Compared to other studies with the most similar methodologies, 22,24,31–33 this Louisiana‐based population had relatively high rates of inpatient hospitalizations (76.4% vs. ∼50‐65% in other studies) and ICU visits (43.4% vs. ∼10%–35% in other studies). The key drivers of geographic variation in end‐of‐life care warrant further study , with possible explanations being attitudes toward intensity of end‐of‐life care, 10 fatalistic religious beliefs, 34 and health literacy 35…”

“…These included chemotherapy use, ICU visits, emergency department visits, mechanical ventilation, and inpatient hospitalization, all confined to the 30 days before death, as well as any palliative care‐focused visit (e.g., symptoms, goals of care) and any use of hospice care in the six months before death. These outcomes were identified based on prior research establishing their validity as indicators of the quality of care near the end of life 10,19–21 . The coding schemes for utilization are noted in the supplementary materials.…”

“…High quality care at the end of life, such as palliative and hospice care, prioritizes patient‐centered communication, psychosocial needs, and non‐curative treatment of physical symptoms 8,9 . This care is often underutilized, however, in favor of treatments that may be burdensome or overly intensive near the end of life 10 . This burdensome care does not provide certain benefit and may jeopardize physical and emotional comfort.…”

“…This burdensome care does not provide certain benefit and may jeopardize physical and emotional comfort. Examples of potentially burdensome care in the 30 days before death include receipt of chemotherapy, intensive care unit (ICU) visits, emergency department visits, inpatient hospitalizations, and mechanical ventilation 10–12 …”