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Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel
Open accessAbstract
Context Despite increasing interest in advance care planning (ACP) and previous ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives.Objective The aim of this study was to develop a consensus definition of ACP for adults.Methods We convened a Delphi panel of multidisciplinary, international ACP experts consisting of 52 clinicians, researchers, and policy leaders from four countries and a patient/surrogate advisory committee. We conducted 10 rounds using a modified Delphi method and qualitatively analyzed panelists' input. Panelists identified several themes lacking consensus and iteratively discussed and developed a final consensus definition.Results Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients' values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: "Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness." The panel also described strategies to best support adults in ACP.Conclusions A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.
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“The instructions acknowledge that ACP is a process [12], preferences often evolve over time in the context of life-limiting disease, and the main goal of the study is to engage participants in the process of considering their values and goals for end of life care, discussing them with key others, and appointing and communicating with a health care decision maker.”
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Forms or Free-Text? Measuring Advance Care Planning Activity Using Electronic Health Records
Zupanc, S. N., Lakin, J. R., Volandes, A. E., Paasche‐Orlow, M. K., Moseley, E. T., Gundersen, D. A., Das, S., Penumarthy, A., Martins-Welch, D., Burns, E. A., et al. (2023) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2023.07.016 · Cited by 12
Rosa, W. E., Gilliland, J. L., McDarby, M., Nelson, J. E., Desai, A. V., & Epstein, A. S. (2023) · Palliative Medicine Reports · doi:10.1089/pmr.2023.0057 · Cited by 12
Çevik, H. S., Muente, C., Muehlensiepen, F., Birtwistle, J. C., Pachanov, A., Pieper, D., & Allsop, M. J. (2024) · Progress in Palliative Care · doi:10.1080/09699260.2024.2339106 · Cited by 13
Chauhan, A., Chitkara, U., Walsan, R., Sansom‐Daly, U. M., Manias, E., Seah, D. S. E., Dalli, A., El‐Kabbout, N., Tieu, N. T., Sarwar, M., et al. (2024) · BMC Palliative Care · doi:10.1186/s12904-024-01453-z · Cited by 12
Pimsen, A., Sumpuntharat, S., Rodney, T. W., Wirojratana, V., & Shu, B. (2024) · Journal of Clinical Nursing · doi:10.1111/jocn.17611 · Cited by 12
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DeBoer, R. J., Wabl, C. A., Mushi, B. P., Uwamahoro, P., Athanas, R., Ndoli, D. A., Rugengamanzi, E., Ngoma, M., Tuyishime, H., Mtei, D., et al. (2025) · The Oncologist · doi:10.1093/oncolo/oyaf039 · Cited by 14
Self-citationFamily Caregiving Situations and Engagement in Advance Care Planning
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Advance Care Planning im Kontext von Demenz
Voß, H., & Kruse, A. (2019) · Zeitschrift für Gerontologie und Geriatrie · doi:10.1007/s00391-019-01624-1 · Cited by 12
Would people living with epilepsy benefit from palliative care?
Kluger, B. M., Drees, C. N., Wodushek, T. R., Frey, L., Strom, L. A., Brown, M., Bainbridge, J. L., Fischer, S. N., Shrestha, A., & Spitz, M. C. (2020) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2020.107618 · Cited by 12
Grounds for surrogate decision-making in Japanese clinical practice: a qualitative survey
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Promoting advance care planning via mediated health resources: A systematic mixed studies review
Diegelmann, S., Bidmon, S., & Terlutter, R. (2021) · Patient Education and Counseling · doi:10.1016/j.pec.2021.06.008 · Cited by 13
Detering, K. M., Sinclair, C., Buck, K., Sellars, M., White, B. P., Kelly, H., & Nolte, L. (2021) · BMC Health Services Research · doi:10.1186/s12913-021-06523-z · Cited by 12
Gracia‐Sánchez, A., López‐Pineda, A., Chicharro‐Luna, E., & Gil-Guillén, V. F. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph182010988 · Cited by 12
Gotanda, H., Nuckols, T. K., Lauzon, M., & Tsugawa, Y. (2022) · Journal of General Internal Medicine · doi:10.1007/s11606-021-07330-2 · Cited by 16
Tros, W., van der Steen, J. T., Liefers, J., Akkermans, R., Schers, H., Numans, M. E., van Peet, P. G., & Groenewoud, S. (2022) · BMC Family Practice · doi:10.1186/s12875-022-01940-3 · Cited by 12
Metadata
- Authors
- Sudore, R. L., Lum, H. D., You, J. J., Hanson, L. C., Meier, D. E., Pantilat, S. Z., Matlock, D. D., Rietjens, J. A. C., Korfage, I. J., Ritchie, C. S., Kutner, J. S., Teno, J. M., Thomas, J., McMahan, R. D., & Heyland, D. K.
- Affiliations
- San Francisco VA Medical Center (US)
- VA Eastern Colorado Health Care System (US)
- McMaster University (CA)
- University of North Carolina at Chapel Hill (US)
- Icahn School of Medicine at Mount Sinai (US)
- University of California, San Francisco (US)
- Erasmus MC (NL)
- University of Colorado Anschutz (US)
- University of Washington (US)
- Coalition for Compassionate Care of California (US)
- Queen's University (CA)
- Corresponding author
- Sudore, Rebecca L.
- ORCID
- Venue
- Journal of Pain and Symptom Management
- Publisher
- Elsevier BV
- Published
- 2017-05
- Volume
- 53
- Issue
- 5
- Pages
- 821-832.e1
- ISSN
- 0885-3924 (ISSN-L)
- PMC
- PMC5728651
- OpenAlex
- W2571458453
- Cited by
- 1,726
- References
- 31
- Citations by year
- 2026: 204 · 2025: 214 · 2024: 239 · 2023: 206 · 2022: 216 · 2021: 213 · 2020: 187 · 2019: 130 · 2018: 83 · 2017: 32
- FWCI
- 110.94
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Journal of Pain and Symptom Management (publishedVersion)
- PubMed (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion)
- PubMed Central (acceptedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- RePub (Erasmus University Rotterdam) (submittedVersion, other-oa)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- NIH (R01AG045043, PCORI-1306-01500, U24NR014637)
- VA HSR&D (11-110-2)
- American Cancer Society (19659)
- 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 › Ethics and bioethics in healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- advance care planning, consensus definition, adults, advance directives, shared decision-making, patient values, treatment preferences, serious illness, chronic disease, surrogate decision-making
- MeSH terms
- Interdisciplinary Research, Adult, Chronic Disease, Decision Making, Delphi Technique, Female, Humans, Male, Terminology as Topic, Practice Guidelines as Topic, Advance Care Planning, Internationality
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