Rethinking Advance Care Planning: Preliminary Findings Of A Delphi Study In Latin America And Implications For Dementia - P551

Natália Rocha Tardelli1, Vilma Adriana Tripodoro2,3, Patricia Bonilla Sierra4, Jenny T. Van der Steen5,6, Rasa Mikelyte7, Fernanda Bono Fukushima8, Alex Sander Watanabe Palácio8, Lucas Frederico Arantes9, Simone Brasil de Oliveira Iglesias10, Paola Marcela Ruíz Ospina11, Daniel Neves Forte12, Bianca Sakamoto Ribeiro Paiva13, Carlos Eduardo Paiva13, Alfredo Rodríguez‑Núñez14, Fernando Elhordoy Arregui15, Brenda Taboada Ovando16,11, Belkys Vasquez Zambrano17,18, María Johana Barabarena19, Sandra Ayales Esna20, Edison Iglesias de Oliveira Vidal1.

1Internal Medicine, Geriatrics division, São Paulo State University, Medical School, Botucatu, Brazil, 2Pallium Latinoamérica Institute, Buenos Aires, Argentina, 3ATLANTES, Global Observatory of Palliative Care, University of Navarra, Navarra, Spain, 4Universidad Técnica Particular de Loja Ecuador, Loja, Ecuador, 5Leiden University Medical Center, Leiden, Netherlands, 6Radboud university medical center, Nijmegen, Netherlands, 7University of Kent, Centre for Health Services Studies, Canterburry, United Kingdom, 8Department of Surgical Specialties and Anesthesiology, Anesthesiology division, São Paulo State University, Medical School, Botucatu, Brazil, 9São Paulo State University, Medical School, Botucatu, Brazil, 10Federal University of São Paulo, São Paulo, Brazil, 11Latin American Association for Palliative Care, Manizales, Colombia, 12University of São Paulo, São Paulo, Brazil, 13Barretos Cancer Hospital, Barretos, Brazil, 14Pontifical Catholic University of Chile, Faculty of Medicine, Santiago, Chile, 15Uruguayan Society of Medicine and Palliative Care, Montevideo, Uruguay, 16Bolivian Alliance Association for Palliative Care, La Paz, Bolivia, Plurinational State of, 17Venezuelan Society of Palliative Medicine, Caracas, Venezuela, Bolivarian Republic of, 18Central Hospital of Maracay, Aragua, Venezuela, Bolivarian Republic of, 19Military Hospital of Nicaragua, Managua, Nicaragua, 20Universidad Santa Paula, San José, Costa Rica

INTRODUCTION

Early Diagnosis of Dementia ENABLES Advance Care Planning (ACP) --> Supports person-centered care & reduces burden on families

HOWEVER...

Existing ACP definitions from the Global North do NOT reflect key aspects of this process in other regions and may HINDER its practice^2-4

OUR AIM: Build consensus on a definition of ACP for Latin America (LA) 

METHODS:

Delphi study following CREDES guidelines⁵

Survey Development: Digital survey created by an expert committee, based on prior research data²

Recruitment: Panelists from 20 Latin American countries, supported by National Palliative Care Associations

Eligibility: ≥ 3 years of experience in ACP practice or research in LA

RESULTS

Total (n): 210 panelists.

Core Components of ACP and Level of Agreement (Figures)

ACP consists of a triadic relationship among patients, families, health and care professionals based on mutual trust, aimed at clarifying values and care preferences to facilitate future decisions. - 96.2%

ACP aims to achieve the best possible balance between respecting patients’ care preferences and reducing their and their families’ suffering. - 95.3%

ACP may include individuals with limited decision-making capacity who can still share values and care preferences - 88.1%

When patients cannot express themselves, ACP can be conducted with family/representatives centered on presumed values and preferences. - 91%

CONCLUSIONS:

A conceptualization of ACP that prioritizes relational over individual autonomy alone

Reflects LA cultural priorities distinct from Global North

The first general definition of ACP that applies beyond a capacity dichotomy

Groundwork for a contextually relevant ACP definition to inform policy, practice, and education across LA, inclusive of people with dementia

REFERENCES: 

1. Van Der Steen JT, Nakanishi M, Van Den Block L, et al. Consensus definition of advance care planning in dementia: A 33‐country Delphi study. Alzheimer’s & Dementia. 2024;20(2):1309-1320. doi:10.1002/alz.13526

2. Tardelli NR, Fukushima FB, Van Der Steen JT, et al. Mapping advance care planning and advance directives in Latin America. BMC Palliat Care. 2025;24(1):226. doi:10.1186/s12904-025-01849-5

3. Miyashita J, Shimizu S, Shiraishi R, et al. Culturally Adapted Consensus Definition and Action Guideline: Japan’s Advance Care Planning. Journal of Pain and Symptom Management. 2022;64(6):602-613. doi:10.1016/j.jpainsymman.2022.09.005

4. Martina D, Lin CP, Kristanti MS, et al. Advance Care Planning in Asia: A Systematic Narrative Review of Healthcare Professionals’ Knowledge, Attitude, and Experience. Journal of the American Medical Directors Association. 2021;22(2):349.e1-349.e28. doi:10.1016/j.jamda.2020.12.018

5. Jünger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684-706. doi:10.1177/0269216317690685

FUNDING: FAPESP grant #2025/15056-9

CONTACT: n.tardelli@unesp.br