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Cited by 241Palliative Care and End-of-Life IssuesPalliative and Oncologic CarePatient-Provider Communication in Healthcare

Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators

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Sinuff, Tasnim, Dodek, Peter, You, John J., Barwich, Doris, Tayler, Carolyn, Downar, James, Hartwick, Michael, Frank, Christopher +2 more·2015·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2014.12.007
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Abstract

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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  • Goals-of-care discussions are frequently documented in unstructured text such as progress notes or other inconspicuous locations, making historical discussions difficult for clinicians to unearth during clinical care.

    “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]

    The Introduction says advance-care plans are frequently unavailable or not requested, and the Quality Indicators section calls for a standardized way to locate goals-of-care documents in the medical record. These passages support the concern about clinicians accessing prior documentation, but they do not say discussions are frequently recorded in unstructured progress notes or other inconspicuous locations. (LLM, conf=0.85)

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Research works printed but not linked: 1

  1. Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life. Arch Intern Med 2009;169: 480e488.

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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)
DOI
10.1016/j.jpainsymman.2014.12.007
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 · 2014: 2
FWCI
26.39
Type
journal article
Language
en
Open access
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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