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Advisor(s)
Abstract(s)
Introdução: A primeira proposta de diretiva antecipada de vontade surgiu nos Estados
Unidos da América, em 1967. Em Portugal, após largos anos de discussão pública, este
instrumento ganhou estatuto legal com a Lei n.º 25/2012. Ao abrigo desta lei, é através
das diretivas antecipadas de vontade que o indivíduo “manifesta antecipadamente a sua
vontade consciente, livre e esclarecida, no que concerne aos cuidados de saúde que deseja
receber, ou não deseja receber, no caso de, por qualquer razão, se encontrar incapaz de
expressar a sua vontade pessoal e autonomamente”. As diretivas antecipadas são, por isso,
uma materialização do princípio da autonomia no que concerne aos cuidados de saúde.
Numa era em que se advoga pelo primado do respeito pela autonomia, constata-se que
apenas 0,4% da população portuguesa tem uma diretiva antecipada de vontade
formalizada no Registo Nacional do Testamento Vital.
Objetivos: (1) Identificar as principais barreiras e limitações à criação e aplicação das
diretivas antecipadas de vontade; (2) compreender as razões que justificam a baixa adesão
às diretivas antecipadas de vontade e (3) contextualizar as barreiras e limitações
identificadas no enquadramento nacional.
Métodos: Para a realização desta revisão sistemática de literatura com síntese narrativa
fez-se pesquisa eletrónica na base de dados PubMed, conjugando os termos MeSH e as
keywords associados aos dois domínios em estudo – “diretivas antecipadas de vontade” e
“barreiras e limitações”. Foram incluídos 33 estudos com resultados que permitiram
identificar barreiras e limitações às diretivas antecipadas de vontade. Os outcomes foram
analisados nas perspetivas do indivíduo e dos profissionais.
Resultados: Para o indivíduo as principais barreiras relacionam-se com as suas crenças e
atitudes, nomeadamente incerteza sobre as suas preferências, fuga ao pensamento sobre a
morte, e incompatibilidade com a sua cultura, religião ou espiritualidade. São também
barreiras a iliteracia em saúde, aspetos sociodemográficos e a condição de saúde. Os
indivíduos encontram ainda limitações ao nível familiar e na relação médico-doente. Para
os profissionais, muitas limitações devem-se à sua falta de conhecimento sobre este
instrumento e às suas atitudes e crenças face ao mesmo. Outras barreiras relacionam-se
com a incerteza do prognóstico, dúvida sobre a sua responsabilidade neste processo e
aspetos da relação com o doente e seus familiares. Conclusão: Pelo impacto que têm sobre o indivíduo e sobre os profissionais que dele
cuidam, as barreiras identificadas comprometem o propósito das diretivas antecipadas de
vontade, fragilizando o princípio da autonomia que está na sua génese.
Introduction: The first proposal of advance directive took place in the United States of America, in 1967. In Portugal, after long years of public discussion, this instrument gained legal status with the Law no. 25/2012. Under this law, it is through the advance directives that a person expresses in advance his/her conscious, free and enlightened will with regard to the health care he/she wishes to receive, or does not wish to receive, if, for whatever reason, he/she is unable to express his/her personal and autonomous will. The advance directives are, therefore, a materialization of the principle of autonomy with regard to health care. In an era where the society advocates for the primacy of respect for autonomy, only 0.4% of the Portuguese population has an advance directive formalized in Registo Nacional do Testamento Vital. Objectives: (1) Identify the main barriers and limitations to the creation and application of advance directives; (2) understand the reasons that justify the low adherence to advance directives and (3) contextualize the barriers and limitations identified in the national framework. Methods: To conduct this systematic literature review with narrative synthesis, an electronic search was performed in the PubMed database, combining the MeSH terms and the keywords associated with the two domains under investigation – “advance directives” and “barriers and limitations”. There were included thirty three studies with results that allowed the identification of barriers and limitations to advance directives. The outcomes were analyzed from the perspectives of the individual and of the professionals. Results: For the individual, the main barriers are related to his/her beliefs and attitudes, namely the uncertainty about his/her preferences, escape from thinking about death, and incompatibility with culture, religion or spirituality. Health illiteracy, sociodemographic aspects and health conditions are also barriers. Individuals also face limitations at the family level and in the doctor-patient relationship. For professionals, many limitations are due to their lack of knowledge about this instrument and their attitudes and beliefs towards it. Other barriers are related to the uncertainty of the prognosis, doubt about their responsibility in this process and aspects of the relationship with the patient and his/her family. Conclusions: Due to their impact on people and on the professionals who care for them, the identified barriers compromise the purpose of advance directives, weakening the principle of autonomy that is at their origin.
Introduction: The first proposal of advance directive took place in the United States of America, in 1967. In Portugal, after long years of public discussion, this instrument gained legal status with the Law no. 25/2012. Under this law, it is through the advance directives that a person expresses in advance his/her conscious, free and enlightened will with regard to the health care he/she wishes to receive, or does not wish to receive, if, for whatever reason, he/she is unable to express his/her personal and autonomous will. The advance directives are, therefore, a materialization of the principle of autonomy with regard to health care. In an era where the society advocates for the primacy of respect for autonomy, only 0.4% of the Portuguese population has an advance directive formalized in Registo Nacional do Testamento Vital. Objectives: (1) Identify the main barriers and limitations to the creation and application of advance directives; (2) understand the reasons that justify the low adherence to advance directives and (3) contextualize the barriers and limitations identified in the national framework. Methods: To conduct this systematic literature review with narrative synthesis, an electronic search was performed in the PubMed database, combining the MeSH terms and the keywords associated with the two domains under investigation – “advance directives” and “barriers and limitations”. There were included thirty three studies with results that allowed the identification of barriers and limitations to advance directives. The outcomes were analyzed from the perspectives of the individual and of the professionals. Results: For the individual, the main barriers are related to his/her beliefs and attitudes, namely the uncertainty about his/her preferences, escape from thinking about death, and incompatibility with culture, religion or spirituality. Health illiteracy, sociodemographic aspects and health conditions are also barriers. Individuals also face limitations at the family level and in the doctor-patient relationship. For professionals, many limitations are due to their lack of knowledge about this instrument and their attitudes and beliefs towards it. Other barriers are related to the uncertainty of the prognosis, doubt about their responsibility in this process and aspects of the relationship with the patient and his/her family. Conclusions: Due to their impact on people and on the professionals who care for them, the identified barriers compromise the purpose of advance directives, weakening the principle of autonomy that is at their origin.
Description
Keywords
Autonomia Diretivas Antecipadas de Vontade Planeamento Antecipado de Cuidados Testamento Vital