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Improving End-of-Life Communication and Decision Making: The Development of a Conceptual Framework and Quality Indicators
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CONTEXT: The goal of end-of-life (EOL) communication and decision making is to create a shared understanding about a person's values and treatment preferences that will lead to a plan of care that is consistent with these values and preferences. Improvements in communication and decision making at the EOL have been identified as a high priority from a patient and family point of view. OBJECTIVES: The purpose of this study was to develop quality indicators related to EOL communication and decision making. METHODS: We convened a multidisciplinary panel of experts to develop definitions, a conceptual framework of EOL communication and decision making, and quality indicators using a modified Delphi method. We generated a list of potential items based on literature review and input from panel members. Panel members rated the items using a seven-point Likert scale (1 = very little importance to 7 = extremely important) over four rounds of review until consensus was achieved. RESULTS: About 24 of the 28 panel members participated in all four rounds of the Delphi process. The final list of quality indicators comprised 34 items, divided into the four categories of our conceptual framework: Advance care planning (eight items), Goals of care discussions (13 items), Documentation (five items), and Organization/System aspects (eight items). Eleven items were rated "extremely important" (median score). All items had a median score of five (moderately important) or greater. CONCLUSION: We have developed definitions, a conceptual framework, and quality indicators that researchers and health care decision makers can use to evaluate and improve the quality of EOL communication and decision making.
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“Additionally, because goals-of-care discussions are frequently documented in unstructured text such as progress notes or other inconspicuous locations, documentation of historical discussions can be difficult for clinicians to unearth during clinical care.12–14”
From Assessment of a Zero-Shot Large Language Model in Measuring Documented Goals-of-Care Discussions (2026) · cites this paper as [14]
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Metadata
- Authors
- Sinuff, T., Dodek, P., You, J. J., Barwich, D., Tayler, C., Downar, J., Hartwick, M., Frank, C., Stelfox, H. T., & Heyland, D. K.
- Affiliations
- Sunnybrook Health Science Centre (CA)
- University of British Columbia (CA)
- McMaster University (CA)
- Fraser Health (CA)
- University of Toronto (CA)
- University of Ottawa (CA)
- Queen's University (CA)
- Alberta Health Services (CA)
- Corresponding author
- Heyland, Daren K.
- ORCID
- Venue
- Journal of Pain and Symptom Management
- Publisher
- Elsevier BV
- Published
- 2015-06
- Volume
- 49
- Issue
- 6
- Pages
- 1070-1080
- ISSN
- 0885-3924 (ISSN-L)
- OpenAlex
- W2041357614
- Cited by
- 241
- References
- 25
- Citations by year
- 2026: 8 · 2025: 15 · 2024: 13 · 2023: 21 · 2022: 31 · 2021: 24 · 2020: 28 · 2019: 25 · 2018: 23 · 2017: 32 · 2016: 12 · 2015: 7
- FWCI
- 26.39
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of Pain and Symptom Management (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- end-of-life communication, end-of-life decisions, advance care planning, goals of care discussions, quality indicators, conceptual framework, patient and family preferences, treatment preferences, healthcare quality improvement
- MeSH terms
- Adult, Aged, Canada, Communication, Decision Making, Female, Health Personnel, Humans, Male, Middle Aged, Palliative Care, Quality Assurance, Health Care, Quality of Health Care, Terminal Care, Advance Care Planning
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