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J Pain Symptom Manage · Apr 2022
ReviewIdentifying core domains to assess the 'quality of death':A scoping review.
- Afsan Bhadelia, Leslie E Oldfield, Jennifer L Cruz, Ratna Singh, and Eric A Finkelstein.
- Department of Global Health and Population (A.B.), Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA. Electronic address: afsan_bhadelia@harvard.edu.
- J Pain Symptom Manage. 2022 Apr 1; 63 (4): e365-e386.
ContextThere is growing recognition of the value to patients, families, society, and health systems in providing healthcare, including end-of-life care, that is consistent with both patient preferences and clinical guidelines.ObjectivesIdentify the core domains and subdomains that can be used to evaluate the performance of end-of-life care within and across health systems.MethodsPubMed/MEDLINE (NCBI), PsycINFO (ProQuest), and CINAHL (EBSCO) databases were searched for peer-reviewed journal articles published prior to February 22, 2020. The SPIDER tool was used to determine search terms. A priori criteria were followed with independent review to identify relevant articles.ResultsA total of 309 eligible articles were identified out of 2728 discrete results. The articles represent perspectives from the broader health system (11), patients (70), family and informal caregivers (65), healthcare professionals (43), multiple viewpoints (110), and others (10). The most common condition of focus was cancer (103) and the majority (245) of the studies concentrated on high-income country contexts. The review identified five domains and 11 subdomains focused on structural factors relevant to end-of-life care at the broader health system level, and two domains and 22 subdomains focused on experiential aspects of end-of-life care from the patient and family perspectives. The structural health system domains were: 1) stewardship and governance, 2) resource generation, 3) financing and financial protection, 4) service provision, and 5) access to care. The experiential domains were: 1) quality of care, and 2) quality of communication.ConclusionThe review affirms the need for a people-centered approach to managing the delicate process and period of accepting and preparing for the end of life. The identified structural and experiential factors pertinent to the "quality of death" will prove invaluable for future efforts aimed to quantify health system performance in the end-of-life period.Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.
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