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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ACP is a process.
“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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Health Literacy Matters More Than Experience for Advance Care Planning Knowledge Among Older Adults
Nouri, S. S., Barnes, D. E., Volow, A. M., McMahan, R. D., Kushel, M., Jin, C., Boscardin, W. J., & Sudore, R. L. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16129 · Cited by 75 · see citing works
Self-citationCulturally Adapted Consensus Definition and Action Guideline: Japan's Advance Care Planning
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Framing advance care planning in Parkinson disease
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Paladino, J., Kilpatrick, L., O’Connor, N. R., Prabhakar, R., Kennedy, A., Neal, B. J., Kavanagh, J. E., Sanders, J. J., Block, S. D., & Fromme, E. K. (2019) · Journal of Palliative Medicine · doi:10.1089/jpm.2019.0334 · Cited by 72 · see citing works
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Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives
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Advance care planning in progressive neurological diseases: lessons from ALS
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McMahan, R. D., Hickman, S. E., & Sudore, R. L. (2024) · Journal of General Internal Medicine · doi:10.1007/s11606-023-08579-5 · Cited by 68 · see citing works
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From Barriers to Assets: Rethinking factors impacting advance care planning for African Americans
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Advance Care Planning in Cognitively Impaired Older Adults
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Patel, A., Ryan, G. W., Tisnado, D. M., Chuang, E., Walling, A. M., Saab, S., Khemichian, S., Sundaram, V., Brook, R. H., & Wenger, N. S. (2021) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2021.0152 · Cited by 62 · see citing works
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Goals of Care Conversations in Serious Illness
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A palliative approach for heart failure end-of-life care
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Self-citationState of advance care planning research: A descriptive overview of systematic reviews
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Advance care planning in Parkinson’s disease: ethical challenges and future directions
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Self-citationAdvance care planning for the severely ill in the hospital: a randomized trial
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Exploring the knowledge, attitudes and needs of advance care planning in older Chinese Australians
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Freytag, J., Street, R. L., Barnes, D. E., Shi, Y., Volow, A. M., Shim, J. K., Alexander, S. C., & Sudore, R. L. (2020) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16405 · Cited by 52 · see citing works
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Self-citationAdvance care planning and caregiver outcomes: intervention efficacy – systematic review
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European Resuscitation Council Guidelines 2025 Ethics in Resuscitation
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Advance care planning for adults with heart failure
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Self-citationGiving Voice to Patient Values Throughout Cancer: A Novel Nurse-Led Intervention
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During COVID ‐19, Outpatient Advance Care Planning Is Imperative: We Need All Hands on Deck
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Advance directives in European long-term care facilities: a cross-sectional survey
Andreasen, P., Finne-Soveri, U. H., Deliëns, L., den Block, L. V., Payne, S. A., Gambassi, G., Onwuteaka-Philipsen, B. D., Smets, T., Lilja, E., Kijowska, V., et al. (2019) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2018-001743 · Cited by 48 · see citing works
- 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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