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Advance directives as a topic in medical education

Abstract

This study investigated the knowledge of medical professors and students during internship regarding advance directives, a device that aims to ensure the right of patients to record their preference for medical care they will be subject to when incapable of making decisions. This is a cross-sectional, descriptive and observational study with a mostly quantitative approach, of which participated 30 professors and 121 medical students from two teaching institutions in Belém/PA. The results identified gaps in the knowledge about the topic, pointing to the need for a deeper approach during medical training and practice. It is concluded that the divulging of advance directives in medical training should be more intense to favor autonomy and share decision making.

Keywords
Advance directives; Terminal care; Education, medical; Knowledge; Bioethics

Resumo

A pesquisa investigou o conhecimento de professores e alunos do internato médico acerca das diretivas antecipadas de vontade, que visam assegurar os direitos dos pacientes de registrar sua preferência pelos cuidados médicos a que serão submetidos quando estiverem incapacitados de tomar decisões. Trata-se de estudo transversal, descritivo, observacional, com abordagem majoritariamente quantitativa, que contou com a participação de 30 professores do curso de medicina e 121 acadêmicos de medicina vinculados a duas instituições de ensino localizadas em Belém/PA. Os resultados revelaram lacunas no conhecimento a respeito do tema, apontando a necessidade de uma abordagem mais aprofundada durante a formação e a prática médica. Conclui-se que é necessário intensificar a divulgação de diretivas antecipadas de vontade no âmbito do ensino médico, de forma a favorecer a autonomia e o compartilhamento das decisões.

Palavras-chave
Diretivas antecipadas; Assistência terminal; Educação médica; Conhecimento; Bioética

Resumen

Esta investigación analizó el conocimiento de profesores y estudiantes de medicina sobre las directivas anticipadas, cuyo objetivo es garantizar los derechos de los pacientes a expresar su preferencia por la atención médica cuando ya no son capaces de comunicarse. Se trata de un estudio transversal, descriptivo, observacional, con enfoque mayoritariamente cuantitativo, en el que participaron 30 profesores de medicina y 121 estudiantes de medicina de dos instituciones de enseñanza situadas en Belém/PA. Los resultados revelaron vacíos en el conocimiento sobre el tema, lo que demuestra la necesidad de un abordaje en profundidad durante la formación y la práctica médica. Se concluye que hay una necesidad de intensificar el conocimiento de las voluntades anticipadas en la formación médica para favorecer la autonomía y la toma de decisiones compartida.

Palabras clave
Directivas anticipadas; Cuidado terminal; Educación médica; Conocimiento; Bioética

In recent years, there has been growing discussion about respect for patient autonomy as an ethical guideline for medical practices. Although autonomy is one of the pillars of medical ethics, scholars draw attention to the difficulties of is practical application, especially in Latin American countries. One of the obstacles to implementation is the predominance of hierarchical and paternalistic practices that characterize physician-patient relationships, a topic that has gained increasing visibility within bioethics, with impacts on teaching and professional practice 11. Garrafa V, Martorell LB, Nascimento WF. Críticas ao principialismo em bioética: perspectivas desde o norte e desde o sul. Saúde Soc [Internet]. 2016 [acesso 5 mar 2024];25(2):442-45. DOI: 10.1590/S0104-12902016150801
https://doi.org/10.1590/S0104-1290201615...
,22. Santos M, Alves MCF. Diretivas antecipadas de vontade (DAV) e autonomia da vontade: uma materialização de direitos fundamentais. Revista Brasileira de Direitos e Garantias Fundamentais [Internet]. 2023 [acesso 5 mar 2024];9(1):21-37. DOI: 10.26668/IndexLawJournals/2526-0111/2023.v9i1.9587
https://doi.org/10.26668/IndexLawJournal...
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Besides medical paternalism, in many countries, Brazil included, the wishes of family members tend to prevail over the patient’s, resulting in the idea that the family has authority, including legal authority, to decide for the patient 33. Lima AFA, Machado FIS. Médico como arquiteto da escolha: paternalismo e respeito à autonomia. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 5 mar 2024];29(1):44-54. DOI: 10.1590/1983-80422021291445
https://doi.org/10.1590/1983-80422021291...
. Although precautions and restrictions are understandable regarding children, adolescents and people without legal competence to make decisions, autonomy is still a challenge to be faced 44. Kipper DJ. Limites do poder familiar nas decisões sobre a saúde de seus filhos - diretrizes. Rev. bioét. (Impr.) [Internet]. 2015 [acesso 5 mar 2024];23(1):40-50. DOI: 10.1590/1983-80422015231044
https://doi.org/10.1590/1983-80422015231...

5. Albuquerque R, Garrafa V. Autonomia e indivíduos sem a capacidade para consentir: o caso dos menores de idade. Rev. bioét. (Impr.) [Internet]. 2016 [acesso 5 mar 2024];24(3):452-8. DOI: 10.1590/1983-80422016243144
https://doi.org/10.1590/1983-80422016243...
-66. Oliveira JS, Bruzaca RD. A interpretação dos tribunais de justiça estaduais brasileiros sobre papel das diretivas antecipadas de vontade para preservação da autonomia do paciente. Revista Jurídica da FA7 [Internet]. 2022 [acesso 5 mar 2024];19(2):87-104. DOI: 10.24067/rjfa7;19.2:1667
https://doi.org/10.24067/rjfa7;19.2:1667...
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According to the Brazilian Federal Council of Medicine (CFM), an advance directive (AD) is a set of wishes, previously and clearly expressed by patients, regarding care and treatments they do or do not want to receive at a time when they are unable to express them freely and autonomously. For the CFM, an AD prevails over any other non-medical opinion, including the wishes of relatives.

In addition, if the patient has designated an agent, their information will also be taken into consideration by the healthcare provider. Furthermore, when in doubt, the physician should submit the case to the institution’s medical ethics committee, the Regional Council of Medicine (CRM) or CFM, aiming to adjust their decisions to the patient’s best interests 77. Conselho Federal de Medicina. Resolução CFM nº 1.995, de 9 de agosto de 2012. Dispõe sobre as diretivas antecipadas de vontade dos pacientes. Diário Oficial da União [Internet]. Brasília, p. 269-70, 31 ago 2012 [acesso 5 mar 2024]. Seção 1. Disponível: https://tny.im/s5K8r
https://tny.im/s5K8r...
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It is noteworthy that the CFM is the only professional association to have deliberated on AD as an aspect of professional ethics. That is because, in the current Brazilian legal system, unlike in other countries, documents expressing patients’ wishes, such as AD and do not attempt cardiopulmonary resuscitation (DNACPR), are not yet duly legalized. The absence of such references creates numerous challenges for health care, requiring the creation of legally supported ethical standards to defend the interests and rights of patients 88. Gauw JH, Albuquerque ALA, Lins IKFG, Chaves JHB. Diretivas antecipadas de vontade: a necessidade de um maior conhecimento desde a graduação. Revista Científica da Faculdade de Medicina de Campos [Internet]. 2017 [acesso 5 mar 2024];12(1):22-5. Disponível: https://tny.im/IHMeh
https://tny.im/IHMeh...
,99. Silva CO, Crippa A, Bonhemberger M. Diretivas antecipadas de vontade: busca pela autonomia do paciente. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 5 mar 2024];29(4):688-96. DOI: 10.1590/1983-80422021294502
https://doi.org/10.1590/1983-80422021294...
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Despite the growing debate about the right to autonomy, many healthcare professionals, including physicians, are unaware of AD and feel insecure in certain daily clinical situations 1010. Mendes MVG, Silva JCDO, Ericeira MAL, Pinheiro AN. Testamento vital: conhecimentos e atitudes de alunos internos de um curso de medicina. Rev Bras Educ Med [Internet]. 2019 [acesso 5 mar 2024];43(2):25-31. DOI: 10.1590/1981-52712015v43n2RB20180117
https://doi.org/10.1590/1981-52712015v43...
. As a result, healthcare providers and family members end up taking on decision-making responsibilities, which may lead to ethical conflicts and interventions that disregard the patient’s wishes 1111. Guirro ÚBDP, Ferreira FDS, Vinne LVD, Miranda GFDF. Conhecimento sobre diretivas antecipadas de vontade em hospital-escola. Rev. bioét. (Impr.) [Internet]. 2022 [acesso 5 mar 2024];30(1):116-25. DOI: 10.1590/1983-80422022301512PT
https://doi.org/10.1590/1983-80422022301...
. Given this context, this article aims to analyze the inclusion of AD as content in medical education curricula from the perspective of internship students and professors at two universities in the state of Pará.

Method

This is a descriptive, cross-sectional and exploratory study, with a quantitative and qualitative approach, carried out in two institutions that offer medical degrees, one public and one private—Universidade do Estado do Pará (Uepa) and Centro Universitário do Pará (Cesupa), respectively. The study was approved by the Research Ethics Committee (CEP) of each institution.

Data were collected by administering a questionnaire prepared by the authors with objective, multiple-choice questions, according to a Likert scale, designed to investigate the degree of agreement in relation to certain statements. The research instrument had one version aimed at students and another aimed at faculty, and the questions were adapted to an electronic format by using the Google Forms platform. Both versions had the following categories of interest: sociodemographic data, knowledge about AD, contact with the subject in the theoretical and practical activities of the course, opinion about AD and challenges to its implementation.

The instrument was subjected to a pre-test, aiming to improve the phrasing of the questions and correct any inadequacies in understanding. The questionnaire was forwarded to the participants with the support of the administrative coordinators of both courses, who mediated the researchers’ contact with the students and professors linked to the internship programs, corresponding to the fifth and sixth years of the course.

The data were organized in Microsoft Excel 2010 and Microsoft Word, Microsoft Excel and Bioestat 5.5 were used to create graphs and tables. The quantitative variables were described by mean and standard deviation and the qualitative variables by frequency and percentage. The independence or association between two categorical variables was verified using the chi-square or Fisher’s exact test, as appropriate.

Significant associations were detailed by analysis of standardized residuals to identify the categories that contributed most to the outcome. The Mann-Whitney test, a non-parametric equivalent of Student’s t test, was used to compare a numerical variable between two groups. Results with p≤0.05 (two-tailed) were considered statistically significant.

Results

Sample

The sample consisted of 151 participants, 92 (60.9%) affiliated to Uepa and 59 (39.1%) to Cesupa. Regarding function, 121 (80.1%) were students and 30 (19.9%) were professors in the medical internship program. Of the total number of students, 65 (53.7%) were women and 56 (46.3%) were men; 112 (92.5%) were between 20 and 29 years old and 9 (7.5%) were between 30 and 39; 51 (42.1%) were from a private institution and 70 (57.9%) from a public institution. Regarding faculty, 19 (63.3%) were women and 11 (36.7%) were men; five (16.6%) aged between 30 and 39 years old, 12 (40%) were between 40 and 49 years old, nine (30%) aged between 50 and 59 years old and four (13.4%) were 60 years old or above; eight (26.7%) were from a private institution and 22 (73.3%) from a public institution.

AD addressed in medical education

When the internship students were asked to report how often AD was addressed during their academic training, 2 (1.6%) said “always,” 26 (21.5%) said “sometimes,” 51 (42 .1%) said “rarely,” 39 (32.3%) said “never” and 3 (2.5%) were unable to answer. As for the professors, 4 (13.3%) said “rarely,” 25 (83.4%) claimed they had never had contact with the subject and 1 (3.3%) was unable to answer.

When the comparative analysis was carried out between students from public and private institutions, there was statistical significance (p=0.024), such that 31.4% (16 of 51) of Cesupa students stated “sometimes,” while this percentage was only 14.3% (10 out of 70) in Uepa. In addition, 41.4% (29 out of 70) of students at the public university stated that the subject had never been addressed, while in the private education center this percentage was 19.6% (10 out of 51), which indicates a greater trend to address the subject at the private university, from the students’ perspective. There was no statistical significance when comparing the groups of professors from the public and private universities (p=0.336).

Of the 88 participants who stated that AD was addressed during medical education, 14 (16.9%) students and one (20%) professor reported that this occurred in theoretical and practical activities; 59 (71.1%) students and two (40%) professors stated that the subject was covered only in theoretical work; and 10 (12%) students and two (40%) professors said it was only addressed in practical activities. There was no statistical significance between the student and faculty groups.

AD knowledge

Around 62% of the participants included in the sample did not know how to define the meaning of AD precisely. When asked about the subject, 12 (40%) professors claimed they could not define it, three (10%) were unable to answer and 15 (50%) responded affirmatively. Regarding the students, 63 (52.1%) claimed they could not define it, 23 (19%) were unable to answer and 35 (28.9%) answered affirmatively.

When asked whether they knew of any CFM resolution on AD, eight (26.7%) professors responded affirmatively, as did 21 (17.4%) students. However, 98 (64.9%) did not feel capable of precisely defining the meaning of the expression “living will,” 84 (69.4%) of whom were students and 14 (46.7%) professors. Six (5%) students and six (20%) professors stated that AD and living will were the same thing, while 58 (47.9%) students and 11 (36.66%) professors claimed that they were different concepts; and 57 (47.1%) students and 13 (43.33%) professors stated they were unable to answer.

Only 29 (19.2%) participants knew the meaning of the expressions “healthcare power of attorney” or “durable power of attorney,” 19 (15.7%) of whom were students and 10 (33.4%) were professors. It is also worth noting that 20 (16.5%) students and 9 (30%) professors stated that they were aware of some CFM regulation on the right to refuse treatment.

Comparisons regarding knowledge about AD between students and professors and between the two institutions were grouped in Tables 1 and 2, respectively. A significantly higher percentage of professors said they knew how to define living will (46.7% of professors versus 10.7% of students, p<0.001) and healthcare power of attorney (33.3% of professors versus 15.7 % of students, p=0.039). However, the percentage of professors who incorrectly stated that AD and living will meant the same thing was also significantly higher (20% of professors versus 5% of students, p=0.023).

Table 1
Relationship between type of affiliation and self-declared knowledge about AD and living will
Table 2
Relationship between type of institution and self-declared knowledge about AD and living will, according to students

When comparing students from the two educational institutions, there was a significant association between type of institution and claiming to know the meaning of AD and/or the CFM resolution on AD. Thus, the percentage of Cesupa students who claimed to know the meaning of AD was higher (43.1% versus 18.6% of Uepa students, p=0.002), as was the percentage of students from that school who reported having knowledge of the resolution on AD (31.4% versus 5.7% of Uepa students, p<0.001). There was no significant relationship between type of institution and frequency of correct answers in other questions related to AD, when comparing the two groups.

Personal opinions about AD

In total, 98 (81%) students and 26 (86.6%) professors totally or partially agreed with the statement that autonomy is a valued ethical principle in medicine. In addition, seven (23.3%) professors and 21 (17.3%) students totally agreed with the statement that patient autonomy should prevail over decisions made. The groups differed significantly when the responses were compared (whether they disagreed/agreed with the statement or did not know)—32.2% of students think that patient autonomy should not prevail, whereas 10% of professors responded negatively to the question (p=0.027).

Of the total, 130 (86.1%) participants believed that there are limits to the exercise of patient autonomy, of whom 106 (87.6%) were students and 24 (80%) were professors; 88 (58.3%) participants, of whom 69 (57.02%) were students and 19 (63.3%) were professors, declared that it was justifiable to go against the patient’s wishes in medical decisions involving the risk of death.

Regarding the statement that physicians should provide information about everything concerning the patient’s clinical condition so that decisions can be taken jointly, 103 (68.2%) totally agreed, of whom 80 (66. 1%) were students and 23 (76.6%) were professors. Complementing the question, of the total number of physicians, 23 (76.6%) responded that they did this “always,” four (13.4%) responded “sometimes,” two (6.6%) said “rarely” and one (3.4%) could not say.

Regarding the refusal of treatment/intervention, 89 (59%) participants agreed that it is a patient right, regardless of the type of circumstance, 41 (27.1%) disagreed and 21 (13.9%) could not say. Also, 108 (71.5%) participants, of whom 87 (71.9%) were students and 21 (70%) were professors, stated that they would have difficulty dealing with a refusal of treatment if it could lead to an unfavorable outcome, such as the death of the patient.

When asked whether the answer would be different if there was no risk of death, 96 (63.6%) answered “yes,” 45 (29.8%) said “no” and 10 (6.6%) were unable to answer. Among those who answered yes, 20 (66.6%) were professors and 76 (62.8%) were students.

In this aspect, when asked if they agreed with the statement that the wishes of family members are as important as the patient’s, and in some cases should prevail over medical decisions, 93 (61.6%) participants disagreed, 76 (62.8%) of whom were students and 17 (56.6%) were professors. Of the total, 43 (28.5%) agreed, 33 (27.27%) of whom were students and 10 (33.33%) were professors, but 15 (9.9%) were unable to answer. In addition, 130 (86%) participants agreed that the patient has the right to choose where to die (for example, at home or in the hospital), 28 (93.3%) of whom were professors and 102 (84.3%) were students.

Personal experience of participants with AD

Regarding the frequency with which they have already talked to a physician and/or family member about their personal preferences in the case of a serious or irreversible illness, 23 participants (15.2%) answered “always,” 15 (12.4%) of whom were students and eight (26.66%) were professors; 30 (19.9%) said “sometimes,” 21 (17.3%) of whom were students and nine (30%) were professors; 37 (24.5%) answered “rarely,” divided into 31 (25.6%) students and six (20%) professors; and 54 (35.8%) said “never,” 47 (38.8%) of whom were students and seven (23.33%) professors. Moreover, seven (4.6%) participants were unable to answer this question, all of whom were students.

When asked if they had ever experienced a conflict in meeting a patient’s preferences that went against medical recommendation, 80 (53%) participants, 56 (46.3%) of whom were students and 24 (80%) were professors, stated “yes”; 63 (41.7%), 57 (47.1%) of whom were students and six (20%) were professors, said “no”; and eight (5.3%) said they did not know how to answer, all of them students. The pattern of faculty responses differed significantly from that of students, with 80% (24/30) of professors stating that they had already experienced such a conflict, while 46.3% of students (56/121) made that statement (p=0.003).

Finally, the participants were asked to indicate in order of importance how they would like to be treated if they were in an end-of-life care situation. As shown in Figure 1, home care and follow-up by a palliative care team were the most frequent responses. In addition, 81 (53.6%) participants, 63 (52%) of whom were students and 18 (60.0%) were professors, stated that it would be very important or important not to receive care merely to extend life.

Figure 1
Degree of importance of alternatives in the case of end-of-life care

ICU: intensive care unit


Discussion

The percentage of professors who had no contact with the subject of AD during their medical training was quite high when compared to the number of students. This is possibly related to the scarcity of such debates in the past, when autonomy and informed consent were not so intensely discussed in the context of medicine. Nowadays, however, the issue of AD has encouraged a break with medical paternalism, requiring greater support and dialog from physicians 33. Lima AFA, Machado FIS. Médico como arquiteto da escolha: paternalismo e respeito à autonomia. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 5 mar 2024];29(1):44-54. DOI: 10.1590/1983-80422021291445
https://doi.org/10.1590/1983-80422021291...
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Although medical education is continually reviewed and updated to meet changes in the Brazilian Curriculum Standards (DCN) for medical courses, subjects related to autonomy and shared decisions still need to gain greater prominence in teaching activities. In this study, the results obtained in both categories reinforce data found in research carried out in a teaching hospital of the Unified Health System (SUS), in which it was observed that only a quarter of healthcare providers and 4.2% of patients were aware of AD, revealing that this is still a little known subject, even among physicians, who should be responsible for this approach 1111. Guirro ÚBDP, Ferreira FDS, Vinne LVD, Miranda GFDF. Conhecimento sobre diretivas antecipadas de vontade em hospital-escola. Rev. bioét. (Impr.) [Internet]. 2022 [acesso 5 mar 2024];30(1):116-25. DOI: 10.1590/1983-80422022301512PT
https://doi.org/10.1590/1983-80422022301...
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It is worth mentioning that more than half of the participants (62%) included in the sample did not know how to precisely define the meaning of AD, corroborating what was shown by Gomes and collaborators 1212. Gomes BMM, Salomão LA, Simões AC, Rebouças BO, Dadalto L, Barbosa MT. Diretivas antecipadas de vontade em geriatria. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 5 mar 2024];26(3):429-39. DOI: 10.1590/1983-80422018263263
https://doi.org/10.1590/1983-80422018263...
when they reported that medical professors and students still have little knowledge about AD. Few participants knew how to accurately define important terms such as “living will,” “healthcare power of attorney” or “durable power of attorney,” or the difference between AD and living will.

Living will is a type of AD used in cases of incapacity due to a terminal illness, and durable power of attorney, which is also a type of AD, provides the appointment of a proxy to represent patients in decisions about their health 1313. Dadalto L. Distorções acerca do testamento vital no Brasil (ou o porquê é necessário falar sobre uma declaração prévia de vontade do paciente terminal). Rev Bioét Derecho [Internet]. 2013 [acesso 5 mar 2024];(28):61-71. DOI: 10.4321/S1886-58872013000200006
https://doi.org/10.4321/S1886-5887201300...
. The responses obtained in relation to this item showed that a significant percentage of the participants were still unaware of the difference between the two documents, indicating a need to clarify their conceptual differences and legal nature. This result is similar to that found in the study by Murasse and Ribeiro 1414. Murasse LS, Ribeiro URVCO. Diretivas antecipadas de vontade: conhecimento e utilização por médicos residentes. Rev. bioét. (Impr.) [Internet]. 2022 [acesso 5 mar 2024];30(3):598-609. DOI: 10.1590/1983-80422022303553PT
https://doi.org/10.1590/1983-80422022303...
, namely that resident doctors felt insecure regarding conceptual and legal aspects of AD.

The poor knowledge about AD should be addressed by the institutions responsible for medical education. The data reveal that a decade after the publication of CFM Resolution 1,995/2012 77. Conselho Federal de Medicina. Resolução CFM nº 1.995, de 9 de agosto de 2012. Dispõe sobre as diretivas antecipadas de vontade dos pacientes. Diário Oficial da União [Internet]. Brasília, p. 269-70, 31 ago 2012 [acesso 5 mar 2024]. Seção 1. Disponível: https://tny.im/s5K8r
https://tny.im/s5K8r...
, AD has been included in the medical curriculum in a superficial manner, which is worrying given that lack of knowledge of current regulations may seriously harm patient autonomy and participation in medical decisions 1515. Scottini MA, Siqueira JE, Moritz RD. Direito dos pacientes às diretivas antecipadas de vontade. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 5 mar 2024];26(3):440-50. DOI: 10.1590/1983-80422018263264
https://doi.org/10.1590/1983-80422018263...
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In addition, students are expected to have contact with this subject in their undergraduate courses as part of their ethical training and with the aim of encouraging them to listen to and validate patients’ wishes and/or preferences. Of the 88 participants who stated that AD was addressed during medical education, most students and professors reported that this only occurred in theoretical activities.

Additionally, in relation to contact with AD in medical school, as well as knowledge of the meaning of AD, students from private institutions had greater statistical significance when compared to those from public universities, which may indicate a more in-depth approach to the subject during their education. However, such results can be relativized and more studies and evidence are required to corroborate the findings. Moreover, the number of correct answers between the two institutions did not differ significantly with regard to other questions about AD.

The results obtained show the need to encourage discussions on the subject in internship programs so that students have the opportunity to improve knowledge and skills, especially those acquired throughout the basic and clinical cycles. In addition, it is expected that students improve their medical practice skills during internship, reviewing and reinventing professional practice in order to meet the new demands of society 1616. Teixeira LDAS, Spicacci FB, Melo IBD, Takao MMV, Dornelas AG, Pardi GR, Bollela V. Internato médico: o desafio da diversificação dos cenários da prática. Rev Bras Educ Méd [Internet]. 2015 [acesso 5 mar 2024];39(2):226-32. DOI: 10.1590/1981-52712015v39n2e00332014
https://doi.org/10.1590/1981-52712015v39...
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The poor contact with the subject in practical activities may justify the gaps in the knowledge of some internship students, since most of them only addressed it in theory. It is also noteworthy that the use of active learning methodologies has proven to be effective in learning and training professional skills compared to the use of traditional methodologies and may a relevant methodological strategy in teaching the subject 1717. Mattar J, Aguiar APS. Metodologias ativas: aprendizagem baseada em problemas, problematização e método do caso. Cadernos de Educação Tecnologia e Sociedade [Internet]. 2018 [acesso 5 mar 2024];11(3):404-15. DOI: 10.14571/brajets.v11.n3.404-415
https://doi.org/10.14571/brajets.v11.n3....
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Unlike other countries, Brazil does not have legislation that makes AD mandatory, although it has been the subject of ethical regulations by the CFM. Therefore, it is common for physicians and family members to disrespect the patient’s wishes and previous choices, which constitutes a violation of their autonomy and reveals unpreparedness to deal with this issue 1818. Cogo SB, Badke MR, Malheiros LCS, Araújo D, Ilha AG. Concepções médicas e dos cuidadores familiares diante das diretivas antecipadas de vontade. Rev Enferm UFSM [Internet]. 2019 [acesso 5 mar 2024];9:e34. DOI: 10.5902/2179769233083
https://doi.org/10.5902/2179769233083...
. The lack of a legal basis for AD, particularly in situations involving terminal illness, makes physicians feel unsure about the legitimacy of the instrument, even if they agree with the need to respect autonomy 1919. Lima JS, Lima JGSR, Lima SISR, Alves HKDL, Rodrigues WF. Diretivas antecipadas da vontade: autonomia do paciente e segurança profissional. Rev. bioét. (Impr.) [Internet]. 2022 [acesso 5 mar 2024];30(4):769-79. DOI: 10.1590/1983-80422022304568PT
https://doi.org/10.1590/1983-80422022304...
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A considerable number of participants stated that they believed there were limits to the exercise of patient autonomy, besides arguing that it was justifiable to go against the patient’s wishes in medical decisions involving the risk of death. It is true that, in emergency situations, many professionals feel compelled to save their patients’ lives for fear of being sued or for reasons of guilt and/or feelings of failure, which may lead them to disregarding patient preferences. Although the subject is quite complex, when it comes to end-of-life care, communication with the patient must be prioritized whenever possible 1515. Scottini MA, Siqueira JE, Moritz RD. Direito dos pacientes às diretivas antecipadas de vontade. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 5 mar 2024];26(3):440-50. DOI: 10.1590/1983-80422018263264
https://doi.org/10.1590/1983-80422018263...
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Respecting patient autonomy by acknowledging and legitimizing patients’ wishes does not mean transferring responsibility for decisions, but creating a supportive environment where they feel free to express their wishes, based on what makes sense in their life. The inclusion of patients in the dialogic process helps to avoid extending life at any cost, reducing the possibility of medical intervention that could further increase their suffering 2020. Almeida NPC, Lessa PHC, Vieira RF, Mendonça AVPDM. Ortotanásia na formação médica: tabus e desvelamentos. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 5 mar 2024];29(4):782-790. DOI: 10.1590/1983-80422021294511
https://doi.org/10.1590/1983-80422021294...
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In this sense, the participants were asked whether they agreed with the statement that physicians should provide information about everything that concerns a patient’s clinical condition so that joint decisions can be made. Approximately two thirds of them responded that they totally agreed, corroborating the findings reported in the literature. Thus, despite enormous advances in valuing autonomy, there is still a need to prevent medical paternalism from prevailing over the wishes of patients, with joint decision-making being one of the ways to ensure their rights 33. Lima AFA, Machado FIS. Médico como arquiteto da escolha: paternalismo e respeito à autonomia. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 5 mar 2024];29(1):44-54. DOI: 10.1590/1983-80422021291445
https://doi.org/10.1590/1983-80422021291...
.

Few participants stated being aware of any CFM resolution on the right to refuse care, showing the need to further problematize the subject, particularly in cases of urgency and emergency, since a patient’s lack of prior knowledge can render the implementation of AD unfeasible 2121. Gomes PA, Goldim JR. Diretivas antecipadas de vontade em unidade de emergência hospitalar. Rev. bioét. (Impr.) [Internet]. 2022 [acesso 5 mar 2024];30(1):106-15. DOI: 10.1590/1983-80422022301511PT
https://doi.org/10.1590/1983-80422022301...
.

Data on participants’ opinions regarding the patient’s right to refuse medical treatment showed that refusing treatment is also a delicate situation from the point of view of autonomy. This is especially the case when there is a prognosis of an unfavorable outcome, even among full-fledged doctors, who constantly deal with the death process. The answers to this question also corroborate the participants’ position regarding the limits to autonomy, as discussed previously.

As documents expressing patients’ wishes are not yet duly legalized in the current Brazilian legal system, they depend on the validation of the healthcare team to be considered legitimate or not. This situation may cause technical and ethical conflicts, especially in potentially life-threatening situations 2222. Silva LA, Pacheco EIH, Dadalto L. Obstinação terapêutica: quando a intervenção médica fere a dignidade humana. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 5 mar 2024];29(4):798-805. DOI: 10.1590/1983-80422021294513
https://doi.org/10.1590/1983-80422021294...
. Therefore, it is very important to prioritize the subject in teaching activities by means of simulation and/or discussion of clinical cases, so that professors and students can discuss the recommended attitudes in handling everyday clinical situations.

Furthermore, in Brazil, the family often also takes on responsibility for decisions on behalf of the patient, especially in situations where there is a risk of death. The number of participants who agreed with the statement that the wishes of relatives are as important as the patient’s, and in some cases should prevail over medical decisions, is worthy of attention. This is especially true with regard to the professors’ opinion, since AD aims to ensure that the patient’s wishes will be respected over the influence or wishes of family members 2323. Barreto AL, Capelas ML. Conhecimento dos profissionais de saúde sobre as diretivas antecipadas de vontade. Cadernos de Saúde [Internet]. 2020 [acesso 5 mar 2024];12(1):36-40. DOI: 10.34632/cadernosdesaude.2020.5834
https://doi.org/10.34632/cadernosdesaude...
.

However, studies carried out in palliative care have shown that family members tend to mediate communication with the medical team, often withholding unfavorable information from the patient, which produces the phenomenon known as “conspiracy of silence” 2424. Machado JC, Reis HFT, Sena ELDS, Silva RSD, Boery RNSDO, Vilela ABA. O fenômeno da conspiração do silêncio em pacientes em cuidados paliativos: uma revisão integrativa. Enferm Actual Costa Rica [Internet]. 2019 [acesso 5 mar 2024];36:92-103. DOI: 10.15517/revenf.v0i36.34235
https://doi.org/10.15517/revenf.v0i36.34...
.

Although most participants considered it important to include AD in teaching activities, the results highlight a challenge previously observed in the scientific literature, as they reveal that AD is not yet implemented in daily clinical routine. In addition, their lack of knowledge results in disrespect for patient rights and also ethical conflicts 1515. Scottini MA, Siqueira JE, Moritz RD. Direito dos pacientes às diretivas antecipadas de vontade. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 5 mar 2024];26(3):440-50. DOI: 10.1590/1983-80422018263264
https://doi.org/10.1590/1983-80422018263...
. In this respect, it is worth mentioning that when asked whether they had ever experienced any conflict in meeting patients’ preferences that were against medical recommendations, a considerable number responded affirmatively (53% of participants).

Cultural aspects should be considered when analyzing the outcomes, as in Brazil there is still a sense of strangeness surrounding discussions about the end of life, even among full-fledged professionals 2525. Mendes EAR, Teixeira FB, Silva JAB Jr., Farias MLL, Araújo PRL, Soeiro ACV. Comunicação médica, cuidados paliativos e oncopediatria: uma revisão integrativa da literatura. Revista Ibero-Americana de Humanidades, Ciências e Educação [Internet]. 2023 [acesso 5 mar 2024];9(6):1593-611. DOI: 10.51891/rease.v9i6.10346
https://doi.org/10.51891/rease.v9i6.1034...
. Although healthcare providers deal constantly with serious and life-threatening diseases, there is still a long way to go in terms of developing skills to deal with grief and issues related to the end of life 2626. Meireles AAV, Amaral CD, Souza VBD, Silva SGD. Sobre a morte e o morrer: percepções de acadêmicos de medicina do norte do Brasil. Rev Bras Educ Méd [Internet].2022 [acesso 5 mar 2024];46(2):e057. DOI: 10.1590/1981-5271v46.2-20210081
https://doi.org/10.1590/1981-5271v46.2-2...
,2727. Santos TF, Pintarelli VL. Educação para o processo do morrer e da morte pelos estudantes de medicina e médicos residentes. Rev Bras Educ Méd [Internet]. 2019 [acesso 5 mar 2024]43(2):5-14. DOI: 10.1590/1981-52712015v43n2RB20180058
https://doi.org/10.1590/1981-52712015v43...
.

When asked about a patient’s right to choose where to die, most participants (86%) responded affirmatively to the question. Such results, besides indicating an appreciation of individual preferences, reinforce the importance of sharing information and explanations about the feasibility of such decision-making, including risks and benefits. This is a decision to be taken with caution, as there are procedures that cannot be carried out at the patient’s home, even if that is their preferred environment.

It is worth mentioning that the answers obtained from professors and students should be considered differently, given that it is expected that professors would already have had some type of experience with the subject, in addition to having greater personal and professional maturity to deal with the complex issues involved in this debate. Therefore, although the study does not offer an in-depth contextualization of the differences, it still serves as a parameter for educational institutions to examine how AD has been addressed in the medical curriculum.

It is also worth noting that discussions about autonomy and AD have only gained prominence in the field of medical education in recent years, in particular thanks to the numerous contributions from medical humanities, medical ethics and bioethics. No doubt such references have a positive influence on the academic training of future professionals by reaffirming the defense of patient rights. However, such debates must be encouraged through continuing education and faculty training, providing those who teach with a critical perspective of the way in which autonomy has been addressed in teaching activities.

Lastly, among the limitations of the study, it is worth highlighting the limited sample of students and professors, as it does not represent the total number of students and professors from all medical education institutions in the metropolitan area of Belém, indicating the need for further research on the subject. Another point to be highlighted concerns the instrument used to assess the knowledge and experience of the participants, since no instrument on the subject was found in the scientific literature that had already been subjected to prior validation by expert judges.

Final considerations

Despite the intensified debate on the right to autonomy, the findings of this study revealed that AD is still a subject to be explored in the field of medical education. The fact that internship students and professors at both institutions have had little contact with the theme in their medical education is an important indicator about the way in which it has been addressed in medicine.

Moreover, although professors and students recognize the importance of autonomy as an ethical value and professional commitment, they have difficulty to apply this principle in certain everyday clinical situations, particularly those involving end-of-life care. This difficulty also derives from technical, ethical and legal issues related to the end of life and the role of physicians in the context of intervention, which may compromise the implementation of AD.

The findings point to the need to discuss AD in medical education to promote improved decisions and interventions in professional practice. However, due to the diversity of existing contexts and particularities, the complexity of autonomy must be taken into account, which requires in-depth study of the topic from undergraduate education.

Considering that AD mediates important medical decisions, students and professors must also be able to talk about it, revisiting their own values and creating spaces for dialog in which patients and families can feel at ease to express their doubts and care decisions and preferences. This requires encouraging reflective, critical and ethical attitudes in order to prevent AD from becoming a mere medical protocol rather than an important achievement in the defense of patient rights.

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  • Approval CEP-Uepa 5.633.498

Publication Dates

  • Publication in this collection
    14 June 2024
  • Date of issue
    2024

History

  • Received
    29 Oct 2023
  • Reviewed
    06 Mar 2024
  • Accepted
    12 Mar 2024
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