APPLICATION OF ADVANCE DIRECTIVES IN PATIENTS WITH INTELLECTUAL DISABILITIES

Authors

  • Louise Bertuol Author
  • Victória Zanella Author
  • Elcio Luiz Bonamigo Author

DOI:

https://doi.org/10.56238/arev7n12-276

Keywords:

Autonomy, Person with Disabilities, Advance Directives, Support for Decision-Making

Abstract

Advance Directives (ADs) represent a fundamental ethical and legal instrument to ensure the autonomy of patients with intellectual disabilities in health decisions. However, their application in people with intellectual disabilities is still permeated by practical, ethical, and legal barriers. The objective of this study was to analyze, through a systematic literature review, the main challenges in the application of ADs in patients with intellectual disabilities. The search was conducted in the PubMed, SciELO, BVS, and Google Scholar databases, encompassing articles between 2012 and 2025. Studies in Portuguese and English that addressed ADs in patients with intellectual disabilities were included. Of the 68 articles identified, 22 met the inclusion criteria. The results highlight three central axes: 1) practical difficulties in culture and communication; 2) the need to use ADs adapted to individuals with disabilities; 3) the adoption of Advance Care Planning (ACP) to promote early dialogue, according to international experience. It is concluded that the effectiveness of advanced driving techniques (ADs) for people with intellectual disabilities depends on cultural change, professional training, adoption of the Pacing Action Plan (PAC), and the use of specific protocols adapted to the Brazilian health system.

Downloads

Download data is not yet available.

References

ALENCAR, Cícero Pereira; ASSIS, Daniel Adolpho Daltin; MUSSE, Luciana Barbosa. Da interdição civil à tomada de decisão apoiada: uma transformação necessária ao reconhecimento da capacidade e dos direitos humanos da pessoa com deficiência. Revista de Estudos Empíricos em Direito, [s. l.], v. 3, n. 2, 2016. Disponível em: https://revistareed.emnuvens.com.br/reed/article/view/134. DOI: https://doi.org/10.19092/reed.v3i2.134

AMERICAN PSYCHIATRIC ASSOCIATION. Intellectual Disability. [S. l.: s. n.], 2013. Disponível em: https://www.psychiatry.org/File Library/Psychiatrists/Practice/DSM/APA_DSM-5-Intellectual-Disability.pdf. .

ANGELUCI, Cleber Affonso; BONGARDI, Ana Letícia. As diretivas antecipadas de vontade: uma perspectiva de inclusão. Revista Meritum, [s. l.], v. vol 15 ed, 2020. Disponível em: http://www.fumec.br/revistas/meritum/article/view/7774. DOI: https://doi.org/10.46560/meritum.v15i4.7774

BARBOSA, Anne Karolyne Santos; LISBOA, Walter; VILAÇA, Anali Póvoas Orico. Percepção de profissionais de saúde sobre diretivas antecipadas de vontade. Revista Bioética, [s. l.], v. 31, 2023. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422023000100536&tlng=pt. DOI: https://doi.org/10.1590/1983-803420233493pt

BARDIN, Laurence. Análise de conteúdo. 13. ed. Lisboa, Portugal: Edições70, 2015.

BEAUCHAMP, Tom; CHILDRESS, James. Principles of Biomedical Ethics : Marking Its Fortieth Anniversary. The American Journal of Bioethics, [s. l.], v. 19, n. 11, p. 9–12, 2019. Disponível em: https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1665402. DOI: https://doi.org/10.1080/15265161.2019.1665402

BÉLANGER, Emmanuelle et al. Advance directives among cognitively impaired persons who had an amyloid PET scan and their care partners: a mixed-methods study. BMC Palliative Care, [s. l.], v. 21, n. 1, p. 194, 2022. Disponível em: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-022-01082-4. DOI: https://doi.org/10.1186/s12904-022-01082-4

BRASIL. Código Civil – Art. 1.783-A. Brasília - DF: [s. n.], 2002. Disponível em: https://www.planalto.gov.br/ccivil_03/leis/2002/L10406.htm. .

BRASIL. Lei no 13.146, de 6 de julho de 2015. Institui a Lei Brasileira de Inclusão da Pessoa com Deficiência (Estatuto da Pessoa com Deficiência). Brasil: 2015. Disponível em: https://www.planalto.gov.br/ccivil_03/_ato2015-2018/2015/lei/l13146.htm.

BRUUN, Andrea et al. Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups. BMC Palliative Care, [s. l.], v. 24, n. 1, p. 13, 2025. Disponível em: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-025-01646-0. DOI: https://doi.org/10.1186/s12904-025-01646-0

BRUUN, Andrea et al. What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study. Palliative Medicine, [s. l.], v. 38, n. 6, p. 669–678, 2024. Disponível em: https://journals.sagepub.com/doi/10.1177/02692163241250218. DOI: https://doi.org/10.1177/02692163241250218

CONSELHO FEDERAL DE MEDICINA. Resolução CFM no 1.995/2012: Diretivas antecipadas de vontade dos pacientes. [S. l.: s. n.], 2012. Disponível em: https://sistemas.cfm.org.br/normas/visualizar/resolucoes/BR/2012/1995%0A (ou outra fonte de PDF oficial). .

FIRST, Michael B. et al. DSM‐5‐TR: overview of what’s new and what’s changed. World Psychiatry, [s. l.], v. 21, n. 2, p. 218–219, 2022. Disponível em: https://onlinelibrary.wiley.com/doi/10.1002/wps.20989. DOI: https://doi.org/10.1002/wps.20989

HUANG, Hsiu-Li et al. The effect of a family-centered advance care planning intervention for persons with cognitive impairment and their family caregivers on end-of-life care discussions and decisions. PLOS ONE, [s. l.], v. 17, n. 9, p. e0274096, 2022. Disponível em: https://dx.plos.org/10.1371/journal.pone.0274096. DOI: https://doi.org/10.1371/journal.pone.0274096

JONGSMA, Karin et al. Motivations for people with cognitive impairment to complete an advance research directive – a qualitative interview study. BMC Psychiatry, [s. l.], v. 20, n. 1, p. 360, 2020. Disponível em: https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02741-7. DOI: https://doi.org/10.1186/s12888-020-02741-7

KALIL, José Helvécio et al. Diretivas antecipadas de vontade: implicações éticas e legais no cenário brasileiro. Revista Saúde Dos Vales, [s. l.], v. 2, n. 1, p. 1–12, 2023. Disponível em: https://rsv.ojsbr.com/rsv/article/view/297.

KIRKENDALL, Abbie; LINTON, Kristen; FARRIS, Saritha. Intellectual Disabilities and Decision Making at End of Life: A Literature Review. Journal of Applied Research in Intellectual Disabilities, [s. l.], v. 30, n. 6, p. 982–994, 2017. Disponível em: https://onlinelibrary.wiley.com/doi/10.1111/jar.12270. DOI: https://doi.org/10.1111/jar.12270

KOTWAL, Ashwin A. et al. Engaging Diverse Older Adults With Cognitive Impairment and Caregivers in Advance Care Planning. Alzheimer Disease & Associated Disorders, [s. l.], v. 35, n. 4, p. 342–349, 2021. Disponível em: https://journals.lww.com/10.1097/WAD.0000000000000465. DOI: https://doi.org/10.1097/WAD.0000000000000465

LIMA, Jussara Silva et al. Diretivas antecipadas da vontade: autonomia do paciente e segurança profissional. Revista Bioética, [s. l.], v. 30, n. 4, p. 769–779, 2022. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422022000400769&tlng=pt. DOI: https://doi.org/10.1590/1983-80422022304568en

MARTINS, Maria do Carmo de Carvalho e et al. Diretivas antecipadas de vontade: aspectos éticos e sua aplicação ao Direito Brasileiro. Revista de Direito Sanitário, [s. l.], v. 23, p. e0015, 2023. Disponível em: https://www.revistas.usp.br/rdisan/article/view/195364. DOI: https://doi.org/10.11606/issn.2316-9044.rdisan.2023.195364

MCCALLION, Philip et al. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end‐of‐life care in advanced dementia. Journal of Applied Research in Intellectual Disabilities, [s. l.], v. 30, n. 6, p. 1160–1164, 2017. Disponível em: https://onlinelibrary.wiley.com/doi/10.1111/jar.12349. DOI: https://doi.org/10.1111/jar.12349

MCKENZIE, Nic et al. My plan for a good life, right to the end: An accessible approach to advance care planning. Journal of Intellectual & Developmental Disability, [s. l.], v. 49, n. 4, p. 475–487, 2024. Disponível em: https://www.tandfonline.com/doi/full/10.3109/13668250.2024.2362979. DOI: https://doi.org/10.3109/13668250.2024.2362979

MEIRELLES, Jussara Maria Leal. Diretivas antecipadas de vontade por pessoa com deficiência. In: MEIRELLES, Jussara Maria Leal (org.). Direito das pessoas com deficiência psíquica e intelectual nas relações privadas. 2. ed. Rio de Janeiro: Processo, 2019. p. 809–826.

NICHOLAS, Lauren Hersch et al. Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life. Innovation in Aging, [s. l.], v. 7, n. 7, 2023. Disponível em: https://academic.oup.com/innovateage/article/doi/10.1093/geroni/igad081/7234920. DOI: https://doi.org/10.1093/geroni/igad081

PEPES, Christiane Veigas et al. Diretivas antecipadas de vontade: instrumento de autonomia para pacientes oncológicos. Revista Bioética, [s. l.], v. 31, 2023. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422023000100534&tlng=pt. DOI: https://doi.org/10.1590/1983-803420233471pt

POZÓN, Sergio Ramos et al. Planejamento antecipado de decisões em saúde mental: análise bioética. Revista Bioética, [s. l.], v. 32, 2024. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422024000100211&tlng=pt. DOI: https://doi.org/10.1590/1983-803420243697pt

SHEPHERD-BANIGAN, Megan et al. Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment. Journal of Palliative Care, [s. l.], v. 37, n. 3, p. 289–297, 2022. Disponível em: https://journals.sagepub.com/doi/10.1177/08258597211063047. DOI: https://doi.org/10.1177/08258597211063047

SOUZA, Iara Antunes de. DIRETIVAS ANTECIPADAS DE VONTADE E PESSOAS COM DEFICIÊNCIA: exercício da autonomia privada existencial. Revista de Biodireito e Direito dos Animais, [s. l.], v. 6, n. 1, p. 55–74, 2020. Disponível em: https://www.indexlaw.org/index.php/revistarbda/article/view/6585. DOI: https://doi.org/10.26668/IndexLawJournals/2525-9695/2020.v6i1.6585

TEIXEIRA, Ana Carolina Brochado; RIBEIRO, Gustavo Pereira Leite. Consentimento informado em intervenções médicas envolvendo pessoas com deficiência intelectual ou psicossocial e a questão das barreiras atitudinais. Revista Brasileira de Direito Civil, [s. l.], v. 27, n. 01, 2021. Disponível em: https://rbdcivil.ibdcivil.org.br/rbdc. DOI: https://doi.org/10.33242/rbdc.2021.01.005

TILLEY, Elizabeth et al. Reflections on an Evidence Review Process to Inform the Co‐Design of a Toolkit for Supporting End‐of‐Life Care Planning With People With Intellectual Disabilities. Health Expectations, [s. l.], v. 27, n. 5, 2024. Disponível em: https://onlinelibrary.wiley.com/doi/10.1111/hex.70062. DOI: https://doi.org/10.1111/hex.70062

TOTH, Karen et al. Intellectual Disability. In: DULCAN’S TEXTBOOK OF CHILD AND ADOLESCENT PSYCHIATRY. [S. l.]: American Psychiatric Association Publishing, 2021. Disponível em: https://psychiatryonline.org/doi/10.1176/appi.books.9781615374809.md07. DOI: https://doi.org/10.1176/appi.books.9781615374809.md07

VANZELLA, Gustavo Scherer et al. Diretivas antecipadas de vontade na perspectiva da população idosa de um município do meio oeste catarinense. Revista Brasileira de Geriatria e Gerontologia, [s. l.], v. 26, 2023. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1809-98232023000100221&tlng=pt. DOI: https://doi.org/10.1590/1981-22562023026.230094.pt

VOSS, Hille et al. Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review. Journal of Pain and Symptom Management, [s. l.], v. 54, n. 6, p. 938-960.e1, 2017. Disponível em: https://linkinghub.elsevier.com/retrieve/pii/S0885392417303470. DOI: https://doi.org/10.1016/j.jpainsymman.2017.04.016

WOLFF, Jennifer L. et al. SHARING Choices: A Pilot Study to Engage Family in Advance Care Planning of Older Adults With and Without Cognitive Impairment in the Primary Care Context. American Journal of Hospice and Palliative Medicine®, [s. l.], v. 38, n. 11, p. 1314–1321, 2021. Disponível em: https://journals.sagepub.com/doi/10.1177/1049909120978771. DOI: https://doi.org/10.1177/1049909120978771

Published

2025-12-24

Issue

Section

Articles

How to Cite

BERTUOL, Louise; ZANELLA, Victória; BONAMIGO, Elcio Luiz. APPLICATION OF ADVANCE DIRECTIVES IN PATIENTS WITH INTELLECTUAL DISABILITIES. ARACÊ , [S. l.], v. 7, n. 12, p. e11385, 2025. DOI: 10.56238/arev7n12-276. Disponível em: https://periodicos.newsciencepubl.com/arace/article/view/11385. Acesso em: 29 dec. 2025.