Mapping advance care planning and advance directives in Latin America
BACKGROUND/AIMS: The extent to which low- and middle-income countries have implemented Advance Care Planning (ACP) and Advance Directives (AD) remains unclear. We aimed to map the current status of ACP/AD in Latin America. METHODS: This cross-sectional, mixed-methods survey of ACP/AD in LA comprised...
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2025
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| author | Natália Rocha Tardelli Fernanda Bono Fukushima Jenny T. van der Steen Manuel Iván Cobas Rodríguez Rasa Mikelyte Daniel Neves Forte Alex Sander Watanabe Palácio Vilma Tripodoro Mirna Garcia Burgoa Douglas Henrique Crispim Alfredo Rodríguez-Núñez Luis Ricardo González Cruz Mariuska Forteza Saéz Patricia Bonilla Sierra Ancu Tatiana Feng Escobar M. Godoy Tulio Enrique Velásquez Castellanos Mariana Saldaña Nisla Camaño Reyes Miriam Elisa Riveros Ríos Maria del Rosario Berenguel Cook Gloria Castillo Pichardo C Aguilar García Álvarez I. González Leonardo de Andrade Rodrigues Brito Edison Iglesias de Oliveira Vidal |
| author_browse | Alex Sander Watanabe Palácio Alfredo Rodríguez-Núñez Ancu Tatiana Feng Escobar C Aguilar Daniel Neves Forte Douglas Henrique Crispim Edison Iglesias de Oliveira Vidal Fernanda Bono Fukushima García Álvarez Gloria Castillo Pichardo I. González Jenny T. van der Steen Leonardo de Andrade Rodrigues Brito Luis Ricardo González Cruz M. Godoy Manuel Iván Cobas Rodríguez Maria del Rosario Berenguel Cook Mariana Saldaña Mariuska Forteza Saéz Miriam Elisa Riveros Ríos Mirna Garcia Burgoa Natália Rocha Tardelli Nisla Camaño Reyes Patricia Bonilla Sierra Rasa Mikelyte Tulio Enrique Velásquez Castellanos Vilma Tripodoro |
| author_facet | Natália Rocha Tardelli Fernanda Bono Fukushima Jenny T. van der Steen Manuel Iván Cobas Rodríguez Rasa Mikelyte Daniel Neves Forte Alex Sander Watanabe Palácio Vilma Tripodoro Mirna Garcia Burgoa Douglas Henrique Crispim Alfredo Rodríguez-Núñez Luis Ricardo González Cruz Mariuska Forteza Saéz Patricia Bonilla Sierra Ancu Tatiana Feng Escobar M. Godoy Tulio Enrique Velásquez Castellanos Mariana Saldaña Nisla Camaño Reyes Miriam Elisa Riveros Ríos Maria del Rosario Berenguel Cook Gloria Castillo Pichardo C Aguilar García Álvarez I. González Leonardo de Andrade Rodrigues Brito Edison Iglesias de Oliveira Vidal |
| author_sort | Natália Rocha Tardelli |
| collection | Producción científica |
| description | BACKGROUND/AIMS: The extent to which low- and middle-income countries have implemented Advance Care Planning (ACP) and Advance Directives (AD) remains unclear. We aimed to map the current status of ACP/AD in Latin America. METHODS: This cross-sectional, mixed-methods survey of ACP/AD in LA comprised interviews with 18 key informants from 18 out of 20 countries, most of whom were appointed by national Palliative Care Associations. Online interviews were conducted with each informant, covering a range of relevant topics from AD regulations to the use of ACP/AD in the context of end-of-life clinical decision making. We performed member checking and data triangulation to confirm our findings. RESULTS: Only eight (44%) countries have some form of ACP/AD regulations. Most regulatory frameworks tend to adopt a legalistic pattern heavily influenced by the North American model. Despite that characteristic of AD regulations in LA, the leading strategy used by patients to avoid unwanted treatment at the end of life is through conversations with their families, whereas the least common strategy was consulting with a lawyer. In six (33%) countries, informants believed it was common for patients to grant their families permission to modify their previous choices regarding future treatments. The religiosity/spirituality of populations play an important role in the implementation of ACP in the region. Additionally, respecting patients' preferences of care at the end of life appears to be tied more to aspects related to the characteristics of doctor-patient relationship, and the degree of integration of palliative care into the healthcare system than the existence or content of AD regulations. There was consensus that none of the countries provide sufficient education about ACP/AD to healthcare professionals. CONCLUSIONS: Our findings encourage rethinking ACP/AD in LA from a decolonial perspective, considering characteristics such as the preference for a relational model of autonomy in several countries and the importance of taking the religiosity/spirituality of individuals into account during ACP conversations. Our data also suggest that honoring patients' preferences of care at the end of life entails integrating palliative care into health care systems, educating healthcare professionals and the population, and fostering longitudinal trusting relationships between those professionals, patients, and their families. |
| format | Article |
| id | oai:cris.upeu.edu.pe:20.500.15037/1348 |
| institution | UPeU |
| language | English |
| publishDate | 2025 |
| publishDateRange | 2025 |
| publishDateSort | 2025 |
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| spelling | oai:cris.upeu.edu.pe:20.500.15037/13482026-10-30T16:15:37ZMapping advance care planning and advance directives in Latin AmericaNatália Rocha TardelliFernanda Bono FukushimaJenny T. van der SteenManuel Iván Cobas RodríguezRasa MikelyteDaniel Neves ForteAlex Sander Watanabe PalácioVilma TripodoroMirna Garcia BurgoaDouglas Henrique CrispimAlfredo Rodríguez-NúñezLuis Ricardo González CruzMariuska Forteza SaézPatricia Bonilla SierraAncu Tatiana Feng EscobarM. GodoyTulio Enrique Velásquez CastellanosMariana SaldañaNisla Camaño ReyesMiriam Elisa Riveros RíosMaria del Rosario Berenguel CookGloria Castillo PichardoC AguilarGarcía ÁlvarezI. GonzálezLeonardo de Andrade Rodrigues BritoEdison Iglesias de Oliveira VidalAdvance care planningAutonomyLatin AmericansPalliative careHealth careHealth professionalsNursingPolitical scienceEnd-of-life carePreferencePersonal autonomyLiving WillsMedicineLong-term careBioethicsPublic relationsMEDLINEHealthcare systemLongitudinal dataPsychologyHealth policyPublic administrationOrgan donationLongitudinal studyHealthcare policyEconomic growthPerson-centered careSociologyAdvance care planningAutonomyLatin AmericansPalliative careHealth careHealth professionalsEnd-of-life carePreferenceAdultAdultAdultCross-Sectional StudiesCross-Sectional StudiesCross-Sectional StudiesFemaleFemaleFemaleHumansHumansHumansLatin AmericaLatin AmericaLatin AmericaMaleMaleMaleMiddle AgedMiddle AgedMiddle AgedPalliative CarePalliative CarePalliative CareSurveys and QuestionnairesSurveys and QuestionnairesSurveys and QuestionnairesTerminal CareTerminal CareTerminal CareAdvance Directives legislation & jurisprudenceAdvance Directives legislation & jurisprudenceAdvance Directives legislation & jurisprudenceAdvance Directives trendsAdvance Directives trendsAdvance Directives trendsAdvance Directives statistics & numerical dataAdvance Directives statistics & numerical dataAdvance Directives statistics & numerical dataAdvance Care Planning standardsAdvance Care Planning standardsAdvance Care Planning standardsAdvance Care Planning trendsAdvance Care Planning trendsAdvance Care Planning trendsAdvance Care Planning statistics & numerical dataAdvance Care Planning statistics & numerical dataAdvance Care Planning statistics & numerical dataQualitative ResearchQualitative ResearchQualitative ResearchHealth Sciences Medicine Public Health, Environmental and Occupational Health Palliative Care and End-of-Life IssuesSocial Sciences Psychology Clinical Psychology Healthcare Decision-Making and RestraintsHealth Sciences Medicine Public Health, Environmental and Occupational Health Palliative and Oncologic CareBACKGROUND/AIMS: The extent to which low- and middle-income countries have implemented Advance Care Planning (ACP) and Advance Directives (AD) remains unclear. We aimed to map the current status of ACP/AD in Latin America. METHODS: This cross-sectional, mixed-methods survey of ACP/AD in LA comprised interviews with 18 key informants from 18 out of 20 countries, most of whom were appointed by national Palliative Care Associations. Online interviews were conducted with each informant, covering a range of relevant topics from AD regulations to the use of ACP/AD in the context of end-of-life clinical decision making. We performed member checking and data triangulation to confirm our findings. RESULTS: Only eight (44%) countries have some form of ACP/AD regulations. Most regulatory frameworks tend to adopt a legalistic pattern heavily influenced by the North American model. Despite that characteristic of AD regulations in LA, the leading strategy used by patients to avoid unwanted treatment at the end of life is through conversations with their families, whereas the least common strategy was consulting with a lawyer. In six (33%) countries, informants believed it was common for patients to grant their families permission to modify their previous choices regarding future treatments. The religiosity/spirituality of populations play an important role in the implementation of ACP in the region. Additionally, respecting patients' preferences of care at the end of life appears to be tied more to aspects related to the characteristics of doctor-patient relationship, and the degree of integration of palliative care into the healthcare system than the existence or content of AD regulations. There was consensus that none of the countries provide sufficient education about ACP/AD to healthcare professionals. CONCLUSIONS: Our findings encourage rethinking ACP/AD in LA from a decolonial perspective, considering characteristics such as the preference for a relational model of autonomy in several countries and the importance of taking the religiosity/spirituality of individuals into account during ACP conversations. Our data also suggest that honoring patients' preferences of care at the end of life entails integrating palliative care into health care systems, educating healthcare professionals and the population, and fostering longitudinal trusting relationships between those professionals, patients, and their families.Articlehttps://pubmed.ncbi.nlm.nih.gov/40913239https://bmcpalliatcare.biomedcentral.com/counter/pdf/10.1186/s12904-025-01849-5https://doi.org/10.1186/s12904-025-01849-510.1186/s12904-025-01849-5https://hdl.handle.net/20.500.15037/1348W4414040471enBMC Palliative Care1472-684X2025-09-052026-06-13T09:54:20Z2026-06-13T09:54:20Z |
| spellingShingle | Advance care planning Autonomy Latin Americans Palliative care Health care Health professionals Nursing Political science End-of-life care Preference Personal autonomy Living Wills Medicine Long-term care Bioethics Public relations MEDLINE Healthcare system Longitudinal data Psychology Health policy Public administration Organ donation Longitudinal study Healthcare policy Economic growth Person-centered care Sociology Advance care planning Autonomy Latin Americans Palliative care Health care Health professionals End-of-life care Preference Adult Adult Adult Cross-Sectional Studies Cross-Sectional Studies Cross-Sectional Studies Female Female Female Humans Humans Humans Latin America Latin America Latin America Male Male Male Middle Aged Middle Aged Middle Aged Palliative Care Palliative Care Palliative Care Surveys and Questionnaires Surveys and Questionnaires Surveys and Questionnaires Terminal Care Terminal Care Terminal Care Advance Directives legislation & jurisprudence Advance Directives legislation & jurisprudence Advance Directives legislation & jurisprudence Advance Directives trends Advance Directives trends Advance Directives trends Advance Directives statistics & numerical data Advance Directives statistics & numerical data Advance Directives statistics & numerical data Advance Care Planning standards Advance Care Planning standards Advance Care Planning standards Advance Care Planning trends Advance Care Planning trends Advance Care Planning trends Advance Care Planning statistics & numerical data Advance Care Planning statistics & numerical data Advance Care Planning statistics & numerical data Qualitative Research Qualitative Research Qualitative Research Health Sciences Medicine Public Health, Environmental and Occupational Health Palliative Care and End-of-Life Issues Social Sciences Psychology Clinical Psychology Healthcare Decision-Making and Restraints Health Sciences Medicine Public Health, Environmental and Occupational Health Palliative and Oncologic Care Natália Rocha Tardelli Fernanda Bono Fukushima Jenny T. van der Steen Manuel Iván Cobas Rodríguez Rasa Mikelyte Daniel Neves Forte Alex Sander Watanabe Palácio Vilma Tripodoro Mirna Garcia Burgoa Douglas Henrique Crispim Alfredo Rodríguez-Núñez Luis Ricardo González Cruz Mariuska Forteza Saéz Patricia Bonilla Sierra Ancu Tatiana Feng Escobar M. Godoy Tulio Enrique Velásquez Castellanos Mariana Saldaña Nisla Camaño Reyes Miriam Elisa Riveros Ríos Maria del Rosario Berenguel Cook Gloria Castillo Pichardo C Aguilar García Álvarez I. González Leonardo de Andrade Rodrigues Brito Edison Iglesias de Oliveira Vidal Mapping advance care planning and advance directives in Latin America |
| title | Mapping advance care planning and advance directives in Latin America |
| title_full | Mapping advance care planning and advance directives in Latin America |
| title_fullStr | Mapping advance care planning and advance directives in Latin America |
| title_full_unstemmed | Mapping advance care planning and advance directives in Latin America |
| title_short | Mapping advance care planning and advance directives in Latin America |
| title_sort | mapping advance care planning and advance directives in latin america |
| topic | Advance care planning Autonomy Latin Americans Palliative care Health care Health professionals Nursing Political science End-of-life care Preference Personal autonomy Living Wills Medicine Long-term care Bioethics Public relations MEDLINE Healthcare system Longitudinal data Psychology Health policy Public administration Organ donation Longitudinal study Healthcare policy Economic growth Person-centered care Sociology Advance care planning Autonomy Latin Americans Palliative care Health care Health professionals End-of-life care Preference Adult Adult Adult Cross-Sectional Studies Cross-Sectional Studies Cross-Sectional Studies Female Female Female Humans Humans Humans Latin America Latin America Latin America Male Male Male Middle Aged Middle Aged Middle Aged Palliative Care Palliative Care Palliative Care Surveys and Questionnaires Surveys and Questionnaires Surveys and Questionnaires Terminal Care Terminal Care Terminal Care Advance Directives legislation & jurisprudence Advance Directives legislation & jurisprudence Advance Directives legislation & jurisprudence Advance Directives trends Advance Directives trends Advance Directives trends Advance Directives statistics & numerical data Advance Directives statistics & numerical data Advance Directives statistics & numerical data Advance Care Planning standards Advance Care Planning standards Advance Care Planning standards Advance Care Planning trends Advance Care Planning trends Advance Care Planning trends Advance Care Planning statistics & numerical data Advance Care Planning statistics & numerical data Advance Care Planning statistics & numerical data Qualitative Research Qualitative Research Qualitative Research Health Sciences Medicine Public Health, Environmental and Occupational Health Palliative Care and End-of-Life Issues Social Sciences Psychology Clinical Psychology Healthcare Decision-Making and Restraints Health Sciences Medicine Public Health, Environmental and Occupational Health Palliative and Oncologic Care |
| topic_facet | Advance care planning Autonomy Latin Americans Palliative care Health care Health professionals Nursing Political science End-of-life care Preference Personal autonomy Living Wills Medicine Long-term care Bioethics Public relations MEDLINE Healthcare system Longitudinal data Psychology Health policy Public administration Organ donation Longitudinal study Healthcare policy Economic growth Person-centered care Sociology Advance care planning Autonomy Latin Americans Palliative care Health care Health professionals End-of-life care Preference Adult Adult Adult Cross-Sectional Studies Cross-Sectional Studies Cross-Sectional Studies Female Female Female Humans Humans Humans Latin America Latin America Latin America Male Male Male Middle Aged Middle Aged Middle Aged Palliative Care Palliative Care Palliative Care Surveys and Questionnaires Surveys and Questionnaires Surveys and Questionnaires Terminal Care Terminal Care Terminal Care Advance Directives legislation & jurisprudence Advance Directives legislation & jurisprudence Advance Directives legislation & jurisprudence Advance Directives trends Advance Directives trends Advance Directives trends Advance Directives statistics & numerical data Advance Directives statistics & numerical data Advance Directives statistics & numerical data Advance Care Planning standards Advance Care Planning standards Advance Care Planning standards Advance Care Planning trends Advance Care Planning trends Advance Care Planning trends Advance Care Planning statistics & numerical data Advance Care Planning statistics & numerical data Advance Care Planning statistics & numerical data Qualitative Research Qualitative Research Qualitative Research Health Sciences Medicine Public Health, Environmental and Occupational Health Palliative Care and End-of-Life Issues Social Sciences Psychology Clinical Psychology Healthcare Decision-Making and Restraints Health Sciences Medicine Public Health, Environmental and Occupational Health Palliative and Oncologic Care |
| url | https://pubmed.ncbi.nlm.nih.gov/40913239 https://bmcpalliatcare.biomedcentral.com/counter/pdf/10.1186/s12904-025-01849-5 https://doi.org/10.1186/s12904-025-01849-5 https://hdl.handle.net/20.500.15037/1348 |
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