Cited by 1,726Palliative Care and End-of-Life IssuesEthics and bioethics in healthcarePalliative and Oncologic Care

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Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

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Sudore, Rebecca L., Lum, Hillary D., You, John J., Hanson, Laura C., Meier, Diane E., Pantilat, Steven Z., Matlock, Daniel D., Rietjens, Judith A.C., Korfage, Ida J., Ritchie, Christine S., Kutner, Jean S., Teno, Joan M., Thomas, Judy, McMahan, Ryan D., Heyland, Daren K.·2017·Journal of Pain and Symptom Management

DOI 10.1016/j.jpainsymman.2016.12.331PMC PMC5728651

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Abstract

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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Pairojkul, S., Raksasataya, A., Sorasit, C., Horatanaruang, D., & Jarusomboon, W. (2023) · Zeitschrift für Evidenz Fortbildung und Qualität im Gesundheitswesen · doi:10.1016/j.zefq.2023.05.010 · Cited by 23
How Well Do Current Measures Assess the Impact of Advance Care Planning on Concordance Between Patient Preferences for End-of-Life Care and the Care Received: A Methodological Review
Johnson, S. B., Butow, P. N., Kerridge, I., Bell, M. L., & Tattersall, M. H. N. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.09.008 · Cited by 23
End-of-life care preferences of the general public and recommendations of healthcare providers: a nationwide survey in Japan
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Communication Tools to Support Advance Care Planning and Hospital Care During the COVID-19 Pandemic: A Design Process
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Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers.
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“While definitions of advance care planning vary, international consensus panels have defined it as the process of supporting adults in exploring values, goals, and preferences to prepare them for future medical decision-making [9, 10].”
Background
Benefits of Structured Advance Care Plan in end-of-Life Care Planning among Older Oncology Patients: A Retrospective Pilot Study
Burghout, C., van Venrooij, L. M. W., Bolt, S., Smilde, T. J., & Wouters, E. (2022) · Journal of Palliative Care · doi:10.1177/08258597221119660 · Cited by 22
Protocol for a national prevalence study of advance care planning documentation and self-reported uptake in Australia
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Advance healthcare directives in mental health: A qualitative analysis from a Spanish healthcare professional's viewpoint
Juliá‐Sanchis, R., García‐Sanjuán, S., Martí, M. F. Z., & Cabañero‐Martínez, M. J. (2019) · Journal of Psychiatric and Mental Health Nursing · doi:10.1111/jpm.12539 · Cited by 22
Optimizing the role of social workers in advance care planning within an academic hospital: an educational intervention program
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Anxious, Depressed, and Planning for the Future: Advance Care Planning in Diverse Older Adults
McMahan, R. D., Barnes, D. E., Ritchie, C. S., Jin, C., Shi, Y., David, D., Walker, E. J., Tang, V., & Sudore, R. L. (2020) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16754 · Cited by 22
Self-citation
Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT
Lyon, M. E., Caceres, S., Scott, R. K., Benator, D., Briggs, L. A., Greenberg, I., D’Angelo, L. J., Cheng, Y. I., & Wang, J. (2021) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909121991807 · Cited by 22
Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications
der Schmitten, J. I., Jox, R. J., Pentzek, M., & Marckmann, G. (2021) · Journal of the American Geriatrics Society · doi:10.1111/jgs.17147 · Cited by 22
Advance care planning in nursing homes: new conversation and documentation tools
Dael, A. W.-V., Gilissen, J., Humbeeck, L. V., Deliëns, L., Stichele, R. V., Gastmans, C., Pivodic, L., & den Block, L. V. (2021) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2021-003008 · Cited by 22
Positive attitudes to advance care planning – a Norwegian general population survey
Sævareid, T. J. L., Pedersen, R., & Magelssen, M. (2021) · BMC Health Services Research · doi:10.1186/s12913-021-06773-x · Cited by 22
Front-Line Hospice Staff Perceptions of Barriers and Opportunities to Discussing Advance Care Planning With Hospice Patients and Their Families
Oh, A., Allison, T. A., Mahoney, K. M., Thompson, N., Ritchie, C. S., Sudore, R. L., & Harrison, K. L. (2021) · Journal of the American Medical Directors Association · doi:10.1016/j.jamda.2021.07.014 · Cited by 22
Self-citation
Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning
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Self-citation
Advance Care Planning in the United States: A 2023 review
Fromme, E. K., Montgomery, C., & Hickman, S. E. (2023) · Zeitschrift für Evidenz Fortbildung und Qualität im Gesundheitswesen · doi:10.1016/j.zefq.2023.05.006 · Cited by 22
End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland
Meier, C., Vilpert, S., Wieczorek, M., Borrat-Besson, C., Jox, R. J., & Maurer, J. (2024) · BMJ Public Health · doi:10.1136/bmjph-2023-000600 · Cited by 22
Willingness of family caregivers of people with dementia to undertake Advance Care Planning: Examining an extended model of the Theory of Planned Behavior
Schiffman, I. K., & Werner, P. (2020) · Dementia · doi:10.1177/1471301220922761 · Cited by 22
Enhancing Advance Care Planning Communication: An Interactive Workshop With Role-Play for Students and Primary Care Clinicians
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Self-citation
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What makes advance care planning discussion so difficult? A systematic review of the factors of advance care planning in healthcare settings
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Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study
van der Steen, J. T., den Block, L. V., Nakanishi, M., Dening, K. H., Parker, D., Larkin, P. J., Giulio, P. D., der Schmitten, J. I., Sudore, R. L., Mimica, N., et al. (2025) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2025.02.471 · Cited by 23
Self-citation
Prospective multicentre cross-sectional audit among older Australians accessing health and residential aged care services: protocol for a national advance care directive prevalence study
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Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel
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Advance Directives in Oncology and Haematology: A Long Way to Go—A Narrative Review
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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: Sudore, Rebecca L.
Lum, Hillary D.
You, John J.
Hanson, Laura C.
Meier, Diane E.
Pantilat, Steven Z.
Matlock, Daniel D.
Rietjens, Judith A.C.
Korfage, Ida J.
Ritchie, Christine S.
Kutner, Jean S.
Teno, Joan M.
Thomas, Judy
McMahan, Ryan D.
Heyland, Daren K.
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)
DOI: 10.1016/j.jpainsymman.2016.12.331
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: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
www.elsevier.com/legal/tdmrep-license (tdm)
www.elsevier.com/open-access/userlicense/1.0/ (vor, 1096 d)
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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Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

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