The DOI matches its Crossref record; 25 of the 25 references it cites were found in a registry or an index.
Improving End-of-Life Communication and Decision Making: The Development of a Conceptual Framework and Quality Indicators
Open accessAbstract
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.
Overview
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
In the citing paper
“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]
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Citations
Cites
Bryan, H., Carpenter, C., & Hoult, S. (2010) · SAGE Publications Ltd eBooks · doi:10.4135/9781446251607.n8 · Cited by 4,174
McLeod, J. (1999) · SAGE Publications Ltd eBooks · doi:10.4135/9781849209588.n8 · Cited by 3,964
Qualitative Research: Consensus methods for medical and health services research
Jones, J., & Hunter, D. (1995) · BMJ · doi:10.1136/bmj.311.7001.376 · Cited by 3,471
Wright, A. A. (2008) · JAMA · doi:10.1001/jama.300.14.1665 · Cited by 2,788
Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010) · BMJ · doi:10.1136/bmj.c1345 · Cited by 2,332
Sampling in qualitative inquiry
Kuzel, A. J. (1992) · Cited by 1,316
Advance Directives and Outcomes of Surrogate Decision Making before Death
Silveira, M. J., Kim, S. Y. H., & Langa, K. M. (2010) · New England Journal of Medicine · doi:10.1056/nejmsa0907901 · Cited by 1,298
Health Care Costs in the Last Week of Life: Associations With End-of-Life Conversations
Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. E., Maciejewski, M. L., Earle, C. C., Block, S. D., Maciejewski, P. K., & Prigerson, H. G. (2009) · Archives of Internal Medicine · doi:10.1001/archinternmed.2008.587 · Cited by 898
Research methods used in developing and applying quality indicators in primary care
Campbell, S., Braspenning, J., Hutchinson, A., & Marshall, M. (2003) · BMJ · doi:10.1136/bmj.326.7393.816 · Cited by 735
Failure to engage hospitalized elderly patients and their families in advance care planning
Heyland, D. K. (2013) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2013.180 · Cited by 496
Self-citation
Cited by
Sorted by citations
Items 201–241 of 241
Advance Care Planning—A Primer
Taneja, K., & Sayal, P. K. (2014) · Western Undergraduate Research Journal Health and Natural Sciences · doi:10.5206/wurjhns.2014-15.12
Wozniak, J. (2015) · Libraries and Cultural Resources (University of Calgary) · doi:10.5072/prism/24952
Irislimane, M., & Lamontagne, F. (2016) · Journal of Palliative Care & Medicine · doi:10.4172/2165-7386.1000279
Espinazo, F. C., Sánchez-Prieto, F., & López‐Sáez, J. B. (2016) · Revista Española de Medicina Legal · doi:10.1016/j.remle.2015.12.001
Font, M. S. (2017) · Tesis Doctorals en Xarxa (Consorci de Serveis Universitaris de Catalunya) · doi:10.6035/14016.2017.165315
Levenseindegesprekken: Handvatten voor gesprekken in het ziekenhuis
van Seggelen, A., & Baalen, M. M. V. A. N.-V. (2017) · Pallium · doi:10.1007/s12479-017-0056-7
Effecting Palliative Care for Chronic Kidney Disease Patients by Increasing Provider Knowledge
Corbett, C. (2017) · MOspace Institutional Repository (University of Missouri)
Rôles des médecins de famille dans les soins liés à la démence
Moore, A. E., Frank, C., & Chambers, L. W. (2018) · Europe PMC (PubMed Central)
Self-citationPerceived Barriers to Discussing End of Life Care PlanningPreprint
Bouchard, K. (2019) · doi:10.28971/532019bk71
Jayaraman, D., Sharma, N., Smrke, A., Simon, J. E., Dodek, P., Heyland, D. K., & You, J. J. (2020) · Canadian Journal of General Internal Medicine · doi:10.22374/cjgim.v15i1.344
Self-citationKomunikacja między lekarzem a rodziną osób u schyłku życia przebywających w placówkach opiekuńczych
Barańska, I., Kijowska, V., & Szczerbińska, K. E. (2019) · Zdrowie Publiczne i Zarządzanie · doi:10.4467/20842627oz.19.017.11974
Im, J. (2018) · TSpace (University of Toronto)
What does the doctor plan to say? Physician-generated plans for advance care planning conversations
Russell, J. C., & Quaack, K. R. (2022) · Qualitative Health Communication · doi:10.7146/qhc.v1i2.131963
Evaluation of a French adaptation of a community-based advance serious illness planning decision aid
Plaisance, A., Mallmes, J., Kamateros, A., & Heyland, D. K. (2023) · PEC Innovation · doi:10.1016/j.pecinn.2023.100182
Self-citationGotfrit, J., Leung, M., Marginean, H., Kobewka, D. M., Fergusson, D. A., & Goodwin, R. A. (2023) · European Journal of Cancer Care · doi:10.1155/2023/3119940
Pun, J. (2025) · Springer eBooks · doi:10.1007/978-3-031-08675-5_8
Plaisance, A., Morin, M., Laflamme, B., & LeBlanc, A. (2024) · Cahiers francophones de soins palliatifs
Plaisance, A., Turgeon, J., Souza, L. G., Légaré, F., Turcotte, S., Germain, N., Jean, T., Dionne, M., Fortier, F.-A., Plante, P., et al. (2025) · Patient · doi:10.1007/s40271-025-00761-7
Ugolini, C., Giantin, V., Feltrin, A., Toni, C. D., Marín, S., Lorusso, M., RUI, M. D., Pegoraro, R., & Zagonel, V. (2025) · Palliative Care and Social Practice · doi:10.1177/26323524251376031
Thangasamy, D. R. J., Venketeswaran, M. V., Ramasamy, T., Suresh, V., Rathipriya, S., Louis, A. R., & Seshadri, R. A. (2025) · Palliative Medicine Reports · doi:10.1177/26892820251392545
Martin, C., Cruise, K., Aggarwal, M., Austgarden, D., & Didiodato, G. (2025) · Trials · doi:10.1186/s13063-025-09323-6
Peerboom, F. B. A. L., Friesen-Storms, J. H. H. M., Coenegracht, B. J. E. G., Pieters, S., van der Steen, J. T., Janssen, D. J. A., & Meijers, J. M. M. (2023) · Figshare · doi:10.6084/m9.figshare.24264687
van Leersum, C. M., Moser, A., van Steenkiste, B., Reinartz, M., Stoffers, E., Wolf, J., & van der Weijden, T. (2020) · Figshare · doi:10.6084/m9.figshare.11998539
Peerboom, F. B. A. L., Friesen-Storms, J. H. H. M., Coenegracht, B. J. E. G., Pieters, S., van der Steen, J. T., Janssen, D. J. A., & Meijers, J. M. M. (2024) · Figshare · doi:10.6084/m9.figshare.24264782
Peerboom, F. B. A. L., Friesen-Storms, J. H. H. M., Coenegracht, B. J. E. G., Pieters, S., van der Steen, J. T., Janssen, D. J. A., & Meijers, J. M. M. (2024) · Figshare · doi:10.6084/m9.figshare.26623981
Eng, V., Hewitt, V., & Kekalih, A. (2022) · Figshare · doi:10.6084/m9.figshare.17982124
van Leersum, C. M., Moser, A., van Steenkiste, B., Reinartz, M., Stoffers, E., Wolf, J., & van der Weijden, T. (2020) · Figshare · doi:10.6084/m9.figshare.11998536
Eng, V., Hewitt, V., & Kekalih, A. (2022) · Figshare · doi:10.6084/m9.figshare.17982127
Cheung, J. T. K., Au, D., Ip, A. H. F., Chan, J., Ng, K., Cheung, L., Yuen, J., Hui, E., Lee, J., Lo, R. S. K., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12452336
Cheung, J. T. K., Au, D., Ip, A. H. F., Chan, J., Ng, K., Cheung, L., Yuen, J., Hui, E., Lee, J., Lo, R. S. K., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12452327
Peerboom, F. B. A. L., Friesen-Storms, J. H. H. M., Coenegracht, B. J. E. G., Pieters, S., van der Steen, J. T., Janssen, D. J. A., & Meijers, J. M. M. (2024) · Figshare · doi:10.6084/m9.figshare.26623978
Ortiz‐Ortiz, K. J., Vazquez-Roldan, M., Gierbolini-Bermúdez, A. J., Ramos-Fernández, M. R., Torres‐Cintrón, C. R., Pagán-Santana, Y., Suárez‐Ramos, T., & Sonawane, K. (2025) · JNCI Cancer Spectrum · doi:10.1093/jncics/pkaf123
Lou, Y., Liu, J., Carr, D., Pei, Y., & Wu, B. (2026) · Research on Aging · doi:10.1177/01640275251414990
Beringer, R., de Vries, B., & Oswald, A. G. (2026) · Sexuality Research and Social Policy · doi:10.1007/s13178-025-01254-w
Lee, R. Y., Li, K. S., Sibley, J., Cohen, T., Lober, W. B., O’Brien, J., LeDuc, N., Andrews, K. M., Ungar, A., Walsh, J., et al. (2026) · Clinical Trials · doi:10.1177/17407745251405386 · Cited by 1
Cubillo, B. R., Jiménez, A. V., de la Higuera, M. Á. M., Gutierrez, P., Parra, D., Romero, N., Aiffil, A. S., Pérez-Flores, I., Pino, M. R., Díaz, R. F., et al. (2026) · Palliative Medicine Reports · doi:10.1177/26892820261446078
Tatsumi, Y., Arao, H., Masukawa, K., Morita, T., Kizawa, Y., Tsuneto, S., Shima, Y., & Miyashita, M. (2026) · Journal of Palliative Care · doi:10.1177/08258597261452747
Differences in Goals of Care Documentation by Patient Language Preference
Ray, A., Zhu, E., Levine, H., Jia, Z., Ashana, D. C., McDermott, C., Pollak, K. I., Bosworth, H. B., STEINHAUSER, K., Casarett, D., et al. (2026) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2026.08.001
Grim, M. D., Hauman, J., Zmysłowska, O., Opsomer, S., Wens, J., Dijck, A. V., & Colliers, A. (2026) · European Journal of General Practice · doi:10.1080/13814788.2026.2745929
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
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review