The advance directives of institutionalized people

values, beliefs and desires related to the end of life

Authors

DOI:

https://doi.org/10.15448/2357-9641.2024.1.46630

Keywords:

advance directives, decision making, bioethics, living will, end-of-life care

Abstract

Objective: the research addressed the participation of institutionalized elderly people in end-of-life care planning, respecting their right to self-determination. The study aimed to record Advance Directives (ADs) and understand patients’ wishes and beliefs in scenarios of serious and irreversible diseases. Methodology: using a cross-sectional study with 40 residents of a Long-Term Care Institution, including seven people with mild dementia, interviews were conducted and the game “The Go Wish Game” was applied. Conclusion: all people interviewed classified as “Very important” the cards: “I do not want to be kept alive by machines, if I really am going to die”, “I want to preserve my dignity”, “I want to be clean, warm and comfortable” and “I want relief from pain and shortness of breath”. Most participants value dignity and relief from discomfort, in addition to refusing invasive life support, such as mechanical ventilation and hemodialysis. Previous experience with such procedures and the fragility of family ties influenced this choice. The study reinforces the importance of discussing issues of finitude, including with dementia patients.

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Author Biographies

Júlia Santana Trombetta, Pontifical Catholic University of Rio Grande do Sul (PUCRS), Porto Alegre, RS, Brazil.

Master in Biomedical Gerontology from the Pontifical Catholic University of Rio Grande do Sul (PUCRS), in Porto Alegre, RS, Brazil, Specialist in Internal Medicine from the Hospital São Lucas of PUCRS. Medical Coordinator of the Asilo Padre Cacique in Porto Alegre, Hospitalist at the Hospital Independência in Porto Alegre.

José Roberto Goldim, Pontifical Catholic University of Rio Grande do Sul (PUCRS), Porto Alegre, RS, Brazil.

PhD in Medicine from the Federal University of Rio Grande do Sul (UFRGS), in Porto Alegre, RS, Brazil. Professor at the Pontifical Catholic University of Rio Grande do Sul (PUCRS), Porto Alegre, RS, Brazil.

References

Conselho Federal de Medicina. Resolução CFM nº 1.995/2012 [Internet]. 31 de agosto de 2012 [citado 29 de julho de 2024]. Disponível em: https://sistemas.cfm.org.br/normas/visualizar/resolucoes/BR/2012/1995

Santana SC, Câmara DD. Percepção e expectativas de pacientes com câncer acerca das diretivas antecipadas de vontade. Rev Bras Cancerol [Internet]. 10 de março de 2022 [citado 29 jul. 2024];68(1). Disponível em: https://rbc.inca.gov.br/index.php/revista/article/view/1625 DOI: https://doi.org/10.32635/2176-9745.RBC.2022v68n1.1625

Brasil. Constituição da República Federativa do Brasil. Brasília, DF: Senado Federal; 1988.

Brasil. Lei n.º 10.406, de 10 de janeiro de 2002. Institui o Código Civil [Internet]. Brasília, DF: Câmara do Deputados; 2002 [citado 19 mar. 2024]. Disponível em: https://www2.camara.leg.br/legin/fed/lei/2002/lei-10406-10-janeiro-2002-432893-publicacaooriginal-1-pl.html

Lee MA, Brummel‐Smith K, Meyer J, Drew N, London MR. Physician orders for life‐sustaining treatment (Polst): outcomes in a pace program. J American Geriatrics Society [Internet]. Out. 2000 [citado 29 jul. 2024];48(10):1219-25. Disponível em: https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2000.tb02594.x DOI: https://doi.org/10.1111/j.1532-5415.2000.tb02594.x

Pan Chacon J, Kobata CM, Liberman SP. A mentira piedosa para o canceroso. Rev Assoc Med Bras (1992, Impr) [Internet]. 1995 [citado 29 jul. 2024];274-6. Disponível em: https://pesquisa.bvsalud.org/portal/resource/pt/lil-164087?lang=en

Gomes PA, Goldim JR. Diretivas antecipadas de vontade em unidade de emergência hospitalar. Rev Bioét [Internet]. Mar. 2022 [citado 29 jul. 2024];30(1):106-15. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422022000100106&tlng=pt DOI: https://doi.org/10.1590/1983-80422022301511en

Chehuen Neto JA, Ferreira RE, Silva NC, Delgado ÁH, Tabet CG, Almeida GG, et al. Testamento vital: o que pensam profissionais de saúde? Rev Bioét [Internet]. dezembro de 2015 [citado 29 jul. 2024];23:572-82. Disponível em: https://www.scielo.br/j/bioet/a/ZS7ghnfbMX9gXf7xY4Bn6vD/?lang=pt DOI: https://doi.org/10.1590/1983-80422015233094

Oliveira ML, Cavalcanti ED, Alves VP, Silva AC. Euthanasia from the perspective of nursing undergraduate students: concepts and challenges. Reme: Rev Min Enf [Internet]. 2014 [citado 29 jul. 2024];18(1). Disponível em: http://www.gnresearch.org/doi/10.5935/1415-2762.20140010 DOI: https://doi.org/10.5935/1415-2762.20140010

Cogo SB, Lunardi VL, Quintana AM, Girardon-Perlini NM, Silveira RS. Desafios da implementação das diretivas antecipadas de vontade à prática hospitalar. Rev Bras Enferm [Internet]. dez. 2016 [citado 29 jul. 2024];69(6):1031-8. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0034-71672016000601031&lng=pt&tlng=pt DOI: https://doi.org/10.1590/0034-7167-2016-0085

Burlá C. A aplicação das diretivas antecipadas de vontade na pessoa com demência [Internet] [tese]. [Porto]: Universidade do Porto; 2015 [citado 29 jul. 2024]. Disponível em: https:// repositorio-aberto.up.pt/bitstream/10216/82654/2/114101.pdf

Tilden VP, Tolle SW, Nelson CA, Fields J. Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nursing Research [Internet]. Mar 2001 [citado 29 jul. 2024];50(2):105-15. Disponível em: http://journals.lww.com/00006199-200103000-00006 DOI: https://doi.org/10.1097/00006199-200103000-00006

Alzheimer's Association. Demência e Alzheimer no Brasil. Alzheimer’s Association [Internet]. c2024 [cited 29 jul. 2024]. Disponível em: https://www.alz.org/demencia-alzheimer-brasil

Kalache A, Veras RP, Ramos LR. O envelhecimento da população mundial: um desafio novo. Rev. Saúde Pública. 1987;21(3):200-10. https://doi.org/10.1590/S0034-89101987000300005 DOI: https://doi.org/10.1590/S0034-89101987000300005

Carvalho TP, Willig MH, Kalinke LP, Ziesemer NBS, Berberian AP, Massi GA.. Representações sociais de idosos institucionalizados acerca da promoção da saúde por meio de ações dialógicas. Contexto & Saúde, 2020;20(40):267-74. https://doi.org/10.21527/2176-7114.2020.40.267-274 DOI: https://doi.org/10.21527/2176-7114.2020.40.267-274

Ministério do Desenvolvimento Social. Encontro sobre integração entre serviços e benefícios socioassistenciais para a pessoa idosa [Evento realizado em São Paulo, 28 e 29 de junho de 2018]. Ministério do Desenvolvimento Social; 2018.

SBGG [Internet]. Projeto cartas na mesa. [citado 29 jul. 2024]. Disponível em: https://sbgg.org.br/projeto-cartas-na-mesa

Bardin L. Análise de conteúdo. São Paulo: Edições 70; 2011.

IBGE [Internet]. 2022 [citado 29 jul. 2024]. Panorama do Censo 2022. Disponível em: https://censo2022.ibge.gov.br/panorama

American Psychiatric Association. Manual diagnóstico e estatístico de transtornos mentais: DSM-5. 5. ed. Porto Alegre: Artmed; 2014.

Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care — a case for greater use. N Engl J Med [Internet]. 28 mar. 1991 [citado 29 jul. 2024];324(13):889-95. Disponível em: http://www.nejm.org/doi/abs/10.1056/NEJM199103283241305 DOI: https://doi.org/10.1056/NEJM199103283241305

Kim J, Heo S, Hong SW, Shim J, Lee J. Correlates of advance directive treatment preferences among community‐dwelling older people with chronic diseases. Int J Older People Nursing [Internet]. Jun. 2019 [citado 29 jul. 2024];14(2):e12229. Disponível em: https://onlinelibrary.wiley.com/doi/10.1111/opn.12229 DOI: https://doi.org/10.1111/opn.12229

Murray K. How doctors die | essay [Internet]. Zócalo Public Square. 2011 [citado 29 jul. 2024]. Disponível em: https://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus

Monteiro RD, Silva Junior AG. Diretivas antecipadas de vontade: percurso histórico na América Latina. Rev Bioét [Internet]. Mar. 2019 [citado 29 jul. 2024];27(1):86-97. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422019000100086&tlng=pt DOI: https://doi.org/10.1590/1983-80422019271290

Gomes BM, Salomão LA, Simões AC, Rebouças BO, Dadalto L, Barbosa MT. Diretivas antecipadas de vontade em geriatria. Rev Bioét [Internet]. dezembro de 2018 [citado 29 jul. 2024];26(3):429-39. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422018000300429&tlng=pt DOI: https://doi.org/10.1590/1983-80422018263263

Kaiser Family Foundation. The Economist Four-Country Survey on Aging and End-of-Life Medical Care. The Economist [Internet]. Abr. 2017 [citado 29 jul. 2024];26(3):429-39. Disponível em: https://files.kff.org/attachment/topline-kaiser-family-foundation-the-economist-four-country-survey-on-aging-and-end-of-life-medical-care

Ribeiro GP, Lima R. A capacidade para consentir sobre intervenções médicas e a deficiência mental e intelectual. Civilistica.com [Internet]. Jan. 2012 [citado 29 jul. 2024];26(3):429-39.

Dadalto L. Testamento vital. 6. ed. Indaiatuba: Editora Foco; 2022.

Appelbaum PS, Grisso T. Assessing Patients’ Capacities to Consent to Treatment. N Engl J Med.[Internet]. 1988 [citado 18 mar. 2024];319(25):1635-8. Disponível em: http://www.nejm.org/doi/abs/10.1056/NEJM198812223192504 DOI: https://doi.org/10.1056/NEJM198812223192504

Moye J, et al. Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med. [Internet]. 2006 [citado 19 mar. 2024];21(1): 78-83. Disponível em: http://link.springer.com/10.1111/j.1525-1497.2005.00288.x DOI: https://doi.org/10.1111/j.1525-1497.2005.00288.x

Alzheimer’s Association. Legal plans: considerations for helping a person living with dementia plan for the future [Internet]. Alzheimer’s Association; 2019 [citado 19 mar. 2024. Disponível em: https://alz.org/media/documents/alzheimers-dementia-legal-plans-b.pdf

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Published

2024-12-06

How to Cite

Santana Trombetta, J., & Goldim, J. R. (2024). The advance directives of institutionalized people : values, beliefs and desires related to the end of life. PAJAR - Pan American Journal of Aging Research, 12(1), e46630. https://doi.org/10.15448/2357-9641.2024.1.46630

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Vol. 12 No. 1 (2024): Single Volume - Continuous flow

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Original Article

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