Acessibilidade / Reportar erro

Advance directives: patient autonomy and professional safety

Abstract

This theoretical study discusses bioethics in the sense of safely promoting and ensuring the patients’ dignity, respectful of their decision making, following regulations and protocols that help fulfill this will and bring safety to the care team. The lack of clear and consensual legal regulations on how to elaborate an advance directive generates uncertainty among healthcare providers, patients and their families. Beyond legal standardization, professionals must also have full knowledge on the topic to correctly guide and inform their patients, thus guaranteeing this right. But ensuring the right to express one’s will is not enough—one must be assured that such whishes will be fulfilled. Further and broader discussions on this topic anchored on the Brazilian reality are needed.

Living wills; Advance directives; Right to die

Resumo

Este estudo teórico discorre sobre a bioética no sentido de promover e assegurar a dignidade do paciente de uma forma segura, que obedeça a sua tomada de decisão, seguindo normativas e protocolos que garantam o cumprimento dessa vontade, e trazendo também segurança para equipe assistencial. A ausência de consenso no meio jurídico, por falta de regulamentações que explicitem as regras para a elaboração de um modelo de diretivas de vontade, gera insegurança nos profissionais de saúde envolvidos, familiares e paciente. Para garantir esse direito, além da normatização jurídica, é necessário que os profissionais tenham pleno conhecimento do assunto, a fim de orientar e informar corretamente seus pacientes. Não basta assegurar ao indivíduo o direito de manifestar sua vontade, é preciso ainda a certeza de que esta será cumprida. Há a necessidade de ampliar discussões acerca da temática, com ênfase na realidade brasileira.

Testamentos quanto à vida; Diretivas antecipadas; Direito a morrer

Resumen

Este estudio teórico trata la bioética en el sentido de promover y garantizar la dignidad del paciente de forma segura, que acepte su toma de decisiones, siguiendo normas y protocolos que garanticen el cumplimiento de esa voluntad, además de brindar seguridad al equipo de atención. La falta de consenso en el ámbito legal respecto a normativa para la elaboración de un modelo de directivas de voluntad produce inseguridad en los profesionales de la salud involucrados, familiares y pacientes. La garantía de este derecho, además de la regulación legal, requiere que los profesionales conozcan el tema para orientar e informar correctamente a sus pacientes. No basta con garantizar al individuo el derecho a expresar su voluntad, sino que también es necesario la certeza de que esta se cumplirá. Son necesarios más estudios para ampliar las discusiones sobre el tema, con énfasis en el contexto brasileño.

Testamento vital; Directivas anticipadas; Derecho a morir

In recent times, advances related to the well-being of terminal patients have prolonged the life duration of many people 11. Piccini CF, Steffani JA, Bonamigo ÉL, Bortoluzzi MC, Schlemper BR Jr. Testamento vital na perspectiva de médicos, advogados e estudantes. Bioethikos [Internet]. 2011 [acesso 25 out 2022];5(4):384-91. Disponível: https://bit.ly/3AqAjAS
https://bit.ly/3AqAjAS...
. Thus, the dignity and autonomy of individuals in the terminal stage become elements that direct decision-making 22. Moreira MADM, Costa SFG, Cunha MLDM, Zaccara AAL, Negro-Dellacqua M, Dutra F. Testamento vital na prática médica: compreensão dos profissionais. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25:168-78. DOI: 10.1590/1983-80422017251178 at the end of life, a complex period for both individuals in the dying process and others involved 33. Junges JR, Cremonese C, Oliveira EA, Souza LL, Backes V. Reflexões legais e éticas sobre o final da vida: uma discussão sobre a ortotanásia. Rev. bioét. (Impr.) [Internet]. 2010 [acesso 25 out 2022];18(2):275-88. Disponível: https://bit.ly/3hOVzcW
https://bit.ly/3hOVzcW...
.

At the end of life, as at any other time, human dignity deserves to be respected and the patient must be involved in the decision-making process, to exercise their autonomy 44. Nunes R. Proposta sobre suspensão e abstenção de tratamento em doentes terminais. Rev. bioét. (Impr.) [Internet]. 2009 [acesso 25 out 2022];17(1):29-39. Disponível: https://bit.ly/3gblHOT
https://bit.ly/3gblHOT...
, which represents the freedom of choice in choosing which treatments they want or not to receive 55. Cardoso B, Chemin BF. O testamento vital diante do direito à vida. Destaques Acadêmicos [Internet]. 2018 [acesso 25 out 2022];10(2):34-52. DOI: 10.22410/issn.2176-3070.v10i2a2018.1709. As a result of these aspects, there are the advance directives, which are the object of the patient’s manifestation of will for medical treatment 66. Dadalto L. A necessidade de um modelo de diretivas antecipadas de vontade para o Brasil: estudo comparativo dos modelos português e franceses. Revista M [Internet]. 2016 [acesso 25 out 2022];1(2):443-60. DOI: 10.9789/2525-3050.2016.v1i2.443-460.

Given the great divergence between concepts and the absence of greater legal certainty that supports physician and patient in decision-making regarding end of life, it is necessary to discuss palliative care, living will, orthothanasia and advance directives. Therefore, using protocols and other documents that respect these wishes and bring security and legal support to the care team is essential.

Thus, this study aims to propose a review about bioethics, in order to promote and ensure the dignity of the patient safely, with respect to their decision-making and obeying the regulations and protocols that promote safety in the fulfillment of this will, in addition to bringing safety to the care team.

Method

This bibliographic review searched articles published in Brazil in the SciELO, LILACS and MEDLINE databases to collect data related to the Brazilian reality. The following terms were used: “living will,” “advance directives” and “orthothanasia.” Studies that met the following inclusion criteria were selected: original Brazilian articles and/or literature reviews published in the period from 2017 to 2021, excluding studies that were outside the proposed theme (Table 1).

Table 1
Number of references found in the databases used, according to the defined search terms

With these terms, a total of 111 references were found. Beginning the analysis, it was observed that, despite containing the keywords, many of these references were inconsistent with the proposed theme or were duplicated (Figure 1).

Figure 1
Literature review flowchart

Results and discussion

This study was developed with data from 21 references, two review articles, one update article and 18 original articles (Chart 1).

Chart 1
Overview of the main information of the studies surveyed in the review

In order to better present this subject, advance directives, central focus of the set of sources studied, some issues need to be discussed, such as patient autonomy, orthothanasia, palliative care, principles of bioethics and legal protection.

Patient autonomy

Patient participation in the decision-making process regarding their treatment is already a reality in Brazil. Numerous cases can be found in this regard, such as the latest edition of the Code of Medical Ethics (CEM) and the approval of the Resolution of the Federal Council of Medicine (CFM) on advance directives 2727. Alves CA, Fernandes MS, Goldim JR. Diretivas antecipadas de vontade: um novo desafio para a relação médico-paciente. Clin Biomed Res [Internet]. 2012 [acesso 25 out 2022];32(3):358-362. Disponível: https://bit.ly/3hOZarE
https://bit.ly/3hOZarE...
.

According to Pessini and Hossne 2828. Pessini L, Hossne WS. Terminalidade da vida e o novo Código de Ética Médica. Bioethikos [Internet]. 2010 [acesso 25 out 2022];4(2):127-9. Disponível: https://bit.ly/3Ef1e3t
https://bit.ly/3Ef1e3t...
, the CEM approved in 2009 established the need to recognize the patient’s autonomy. In order to ensure the expression of the patients’ will, CFM Resolution 1,955/2012, as pointed out by Dadalto 2929. Dadalto L. Reflexos jurídicos da Resolução CFM 1.995/12. Rev. bioét. (Impr.) [Internet]. 2013 [acesso 25 out 2022];21:106-12. Disponível: https://bit.ly/3UIj0Di
https://bit.ly/3UIj0Di...
, established the advance directives, which have the following characteristics: 1) directive, as it is a guideline, and not an obligation; 2) advance because it is said beforehand; and 3) will based on the ability to make decisions aimed at their best interest.

The patient’s expression of will, in advance, guarantees to them the right to decide how they wish to conduct the last moments of their life. The loss of consciousness and of the ability to make decisions and communicate them in the final stage of life cannot take away from the individual the power to decide their life project in advance 3030. Bussinguer ECA, Barcellos IA. O direito de viver a própria morte e sua constitucionalidade. Ciênc Saúde Colet [Internet]. 2013 [acesso 25 out 2022];18(9):2691-8. DOI: 10.1590/S1413-81232013000900024.

Advance directives

Advance directives can be defined as written instructions in which the person, in a free and informed way, exposes their wills and positions, in order to guide future decisions related to their health. They can be written by all adult individuals, regardless of their current state of health, and become effective from the moment there is medical evidence that the patient is unable to make decisions 3131. Dadalto L, coordenadora. Diretivas antecipadas de vontade: ensaios sobre o direito à autodeterminação. Belo Horizonte: Letramento; 2013.,3232. Furtado GR. Considerações sobre o testamento vital. Civilistica [Internet]. 2013 [acesso 25 out 2022];2(2):1-20. Disponível: https://bit.ly/3hPr5Yq
https://bit.ly/3hPr5Yq...
.

There are two types of advance directives: durable healthcare power of attorney and living will. The first corresponds to the appointment, by the person, of someone trusted to make decisions about their health care, in case of becoming incapable. The living will, in turn, is a legal document in which the patient has the autonomy to define what kind of medical procedure they wish to be submitted to when their clinical condition is irreversible and they can no longer make decisions 3131. Dadalto L, coordenadora. Diretivas antecipadas de vontade: ensaios sobre o direito à autodeterminação. Belo Horizonte: Letramento; 2013.,3232. Furtado GR. Considerações sobre o testamento vital. Civilistica [Internet]. 2013 [acesso 25 out 2022];2(2):1-20. Disponível: https://bit.ly/3hPr5Yq
https://bit.ly/3hPr5Yq...
.

The discussion on advance directives pervades the question of the dignity of the human person and of dignified death. As death is a phase that belongs to life, it should not be ignored, and it is necessary to guarantee the right to dignity. Thus, physicians have a fundamental role in the face of terminality, because, by respecting the final provisions of the patient, they are also conferring dignity to this moment 3333. Lingerfelt D, Hupsel L, Macedo L, Mendonça M, Ribeiro R, Gusmão Y, Moura Y. Terminalidade da vida e diretiva antecipadas de vontade do paciente. Direito UNIFACS: Debate Virtual [Internet]. 2013 [acesso 25 out 2022];(152). Disponível: https://bit.ly/3TJ6W3m
https://bit.ly/3TJ6W3m...
.

This issue also involves other concepts, equally important for this discussion: euthanasia, dysthanasia, orthothanasia and assisted suicide.

Euthanasia, dysthanasia, orthothanasia and assisted suicide

According to Mallet 3434. Mallet MT. Testamento vital [trabalho de conclusão de curso] [Internet]. Porto Alegre: Pontifícia Universidade Católica do Rio Grande do Sul; 2015 [acesso 25 out 2022]. Disponível: https://bit.ly/3V2M7kr
https://bit.ly/3V2M7kr...
, euthanasia is a practice not allowed in Brazil through which the patient’s life is shortened, characterizing favoring of death. It may be active or passive, and occurs, respectively, by action of third parties or by omission of third parties. Dysthanasia, on the other hand, according to Diniz, is characterized as an exaggerated prolongation of the death of a terminal patient undergoing useless treatment 3535. Diniz MH. O estado atual do biodireito. São Paulo: Saraiva; 2014. p. 1-12.. Assisted suicide consists in the patient ending their own life with the help or assistance of a third party 3636. Barroso LR, Martel LCV. A morte como ela é: dignidade e autonomia individual no final da vida. ConJur [Internet]. 2012 [acesso 25 out 2022]. Disponível: https://bit.ly/3V1fPGA
https://bit.ly/3V1fPGA...
.

As an alternative to euthanasia and dysthanasia, there is orthothanasia, a situation in which the physician adopts a posture that aims to ensure the greatest possible comfort to the patient and allows tranquility when dying. This conduct is in line with what is proposed by palliative care 3333. Lingerfelt D, Hupsel L, Macedo L, Mendonça M, Ribeiro R, Gusmão Y, Moura Y. Terminalidade da vida e diretiva antecipadas de vontade do paciente. Direito UNIFACS: Debate Virtual [Internet]. 2013 [acesso 25 out 2022];(152). Disponível: https://bit.ly/3TJ6W3m
https://bit.ly/3TJ6W3m...
.

Given the lack of regulation on the subject, CFM Resolution 1,955/2012 was created to provide security to physicians 2929. Dadalto L. Reflexos jurídicos da Resolução CFM 1.995/12. Rev. bioét. (Impr.) [Internet]. 2013 [acesso 25 out 2022];21:106-12. Disponível: https://bit.ly/3UIj0Di
https://bit.ly/3UIj0Di...
. According to Lima 1717. Lima MA. Testamento vital à luz do ordenamento jurídico brasileiro e o princípio pro homine. Cad Iberoamer Dir Sanit [Internet]. 2018 [acesso 25 out 2022];7(1):12-28. DOI: 10.17566/ciads.v7i1.422, the living will seeks the achievement of orthothanasia, which is the non-extension of life when death is imminent, with suspension of medications or artificial means that alleviate pain or prolong the life of the patient.

According to Diniz, orthothanasia is the act of letting die in its right time, without abbreviation or disproportionate extension, by suspending a vital measure or shutting down sophisticated machines, which replace and control organs that go into dysfunction. (...) In orthothanasia, there is no deliberation to cause death, but the cessation of an act that will prolong life 3535. Diniz MH. O estado atual do biodireito. São Paulo: Saraiva; 2014. p. 1-12..

The concept of dignified death may imply the need for orthothanasia, which, as stated, is the non-extension by artificial means of the natural process of dying, practiced only by the physician, with the consent of the patient or family 3737. Batista KT, Seidl EMF. Estudo acerca de decisões éticas na terminalidade da vida em unidade de terapia intensiva. Comun Ciênc Saúde [Internet]. 2011 [acesso 25 out 2022];22(1):51-60. Disponível: https://bit.ly/3V68i9o
https://bit.ly/3V68i9o...
.

Less than half of the participants in a survey conducted through a questionnaire demonstrated satisfactory knowledge of the concepts of dysthanasia, orthothanasia and euthanasia, which is worrying, since knowledge about a conduct determines its execution in practice. It is still necessary to broaden the approach to the subject in the curriculum of medical programs, including discussions on biolaw and bioethics and investing in the training of professionals who deal daily with the terminality of life 77. Cano CWA, Silva ALC, Barboza AF, Bazzo BF, Martins CP, Iandoli D Jr et al. Finitude da vida: compreensão conceitual da eutanásia, distanásia e ortotanásia. Rev. bioét. (Impr.) [Internet]. 2020 [acesso 25 out 2022];28:376-83. DOI: 10.1590/1983-80422020282399. As noted by Chehuen Neto and collaborators 3838. Chehuen Neto J, Ferreira R, Silva N, Delgado A, Tabet C, Almeida G. Testamento vital: o que pensam profissionais de saúde? Rev. bioét. (Impr.) [Internet]. 2015 [acesso 25 out 2022];23(3):572-82. DOI: 10.1590/1983-80422015233094, most health professionals are unaware of the living will and CFM Resolution 1,995/2012.

It is quite common to confuse passive euthanasia with orthothanasia. This association is erroneous, as shown by Dadalto 3131. Dadalto L, coordenadora. Diretivas antecipadas de vontade: ensaios sobre o direito à autodeterminação. Belo Horizonte: Letramento; 2013., who points out that in passive euthanasia there is an omission of common treatments and lack of palliative care, while in orthothanasia, treatments not performed are classified as extraordinary and futile.

Palliative care

The concept of palliative care, advocated in the 1960s by the pioneers of the Saint Christopher Hospice, London, aimed above all to improve the end of life of cancer patients. This view extended to the terminal phase of other diseases and to patients of different ages, especially younger patients 3939. Saunders C. A personal therapeutic journey. BMJ [Internet]. 1996 [acesso 25 out 2022];313(7072):1599-601. DOI: 10.1136/bmj.313.7072.1599.

According to Rajagopal and Palat 4040. Rajagopal M, Palat G. Kerala, India: status of cancer pain relief and palliative care. J Pain Symptom Manage [Internet]. 2002 [acesso 25 out 2022];24(2):191-3. DOI: 10.1016/s0885-3924(02)00441-4, the World Health Organization (WHO) proposes palliative care as an approach that aims to improve the quality of life of patients who face problems resulting from an incurable disease and their families, by alleviating physical and spiritual suffering. Considering the importance of palliative care, it is urgent to reflect on the subject so that it is possible to bring it closer to current medical practice 4141. Chaves JHB, Mendonça VLG, Pessini L, Rego G, Nunes R. Cuidados paliativos na prática médica: contexto bioético. Rev Dor [Internet]. 2011 [acesso 25 out 2022];12(3):250-5. DOI: 10.1590/S1806-00132011000300011.

In this discussion, it is necessary to consider the principles of bioethics proposed by Beauchamp and Childress 4242. Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford: Oxford University Press; 2001. in 1979: beneficence, non-maleficence, autonomy and justice.

Principles of bioethics

The four fundamental ethical principles must be applied when it comes to palliative care. If this is not the case, a significant contingent of the patients will continue, in practice, to be excluded from the system (justice), will not have their problems solved (beneficence), will continue to be treated with inappropriate methods, which often only add suffering to that induced by the disease itself (non-maleficence), and self-determination will be compromised (autonomy) 4343. Gordon EJ, Daugherty CK. ‘Hitting you over the head’: oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics [Internet]. 2003 [acesso 25 out 2022];17(2):142-68. Disponível: https://bit.ly/3Od02SM
https://bit.ly/3Od02SM...
.

The living will directly aligns with these concepts, especially that of autonomy, which allows the patient to exercise their right of opinion and to have their values and desires respected, even in a moment of fragility 4444. Dias HW, Castro Oliviera GPT, Correia IS. Testamento vital: dos cuidados paliativos a sua legitimidade diante do direito à vida. Humanidades & Inovação [Internet]. 2020 [acesso 25 out 2022];7(19):610-23. Disponível: https://bit.ly/3Gm2TXR
https://bit.ly/3Gm2TXR...
.

Legal protection

The living will is an optional document that can be prepared at any time, provided that the person is 18 years of age or older or is emancipated in court 1717. Lima MA. Testamento vital à luz do ordenamento jurídico brasileiro e o princípio pro homine. Cad Iberoamer Dir Sanit [Internet]. 2018 [acesso 25 out 2022];7(1):12-28. DOI: 10.17566/ciads.v7i1.422, is lucid, able and in full mental faculties. Patients can also choose to prepare a durable healthcare power of attorney, appointing someone they trust to be their attorney and make decisions about their situation, as long as there is a bond of intimacy 3131. Dadalto L, coordenadora. Diretivas antecipadas de vontade: ensaios sobre o direito à autodeterminação. Belo Horizonte: Letramento; 2013..

The major issue concerning the discussion on this subject is precisely the lack of consensus in the legal sphere due to the lack of regulations that establish rules for the preparation of advance directives. According to Dadalto 2929. Dadalto L. Reflexos jurídicos da Resolução CFM 1.995/12. Rev. bioét. (Impr.) [Internet]. 2013 [acesso 25 out 2022];21:106-12. Disponível: https://bit.ly/3UIj0Di
https://bit.ly/3UIj0Di...
, CFM Resolution 1,995/2012 allows the living will to be expressed orally by the patient and recorded by the physician in their medical record, instead of in writing. According to Mallet 3434. Mallet MT. Testamento vital [trabalho de conclusão de curso] [Internet]. Porto Alegre: Pontifícia Universidade Católica do Rio Grande do Sul; 2015 [acesso 25 out 2022]. Disponível: https://bit.ly/3V2M7kr
https://bit.ly/3V2M7kr...
, the living will is valid in Brazil and has its legitimacy guaranteed in the Federal Constitution, but specific legislation would facilitate its application and avoid controversy, which was also addressed in the study of Pittelli, Oliveira and Nazareth 2323. Pittelli SD, Oliveira RA, Nazareth JC. Diretivas antecipadas de vontade: proposta de instrumento único. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 25 out 2022];28:604-9. DOI: 10.1590/1983-80422020284423.

Lingerfelt and collaborators 3333. Lingerfelt D, Hupsel L, Macedo L, Mendonça M, Ribeiro R, Gusmão Y, Moura Y. Terminalidade da vida e diretiva antecipadas de vontade do paciente. Direito UNIFACS: Debate Virtual [Internet]. 2013 [acesso 25 out 2022];(152). Disponível: https://bit.ly/3TJ6W3m
https://bit.ly/3TJ6W3m...
propose the creation of an integrated computerized system that guarantees the proper registration of patients’ advance directives, which would provide a formalization of the living will and greater security to patients and health professionals.

To guarantee this right, it is necessary to formalize a Brazilian model of advance directives that is known to physicians and their teams, attached to the medical record. In addition to legal regulation, professionals have full knowledge about the subject in order to guide and inform their patients correctly.

Studies show, through questionnaires and interviews, that many professionals (physicians, nurses, students, lawyers) do not know the meaning of the living will 22. Moreira MADM, Costa SFG, Cunha MLDM, Zaccara AAL, Negro-Dellacqua M, Dutra F. Testamento vital na prática médica: compreensão dos profissionais. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25:168-78. DOI: 10.1590/1983-80422017251178,77. Cano CWA, Silva ALC, Barboza AF, Bazzo BF, Martins CP, Iandoli D Jr et al. Finitude da vida: compreensão conceitual da eutanásia, distanásia e ortotanásia. Rev. bioét. (Impr.) [Internet]. 2020 [acesso 25 out 2022];28:376-83. DOI: 10.1590/1983-80422020282399,88. 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 25 out 2022];9:e34. DOI: 10.5902/2179769233083,1010. Cogo SB, Lunardi VL, Nietsche EA. Considerações acerca da atuação do enfermeiro na aplicabilidade das diretivas antecipadas de vontade. Enferm Foco [Internet]. 2017 [acesso 25 out 2022];8(2):26-30. Disponível: https://bit.ly/3hFmXtM
https://bit.ly/3hFmXtM...
,1111. Cogo SB, Lunardi VL, Quintana AM, Girardon-Perlini NMO, Silveira RS. Assistência ao doente terminal: vantagens na aplicabilidade das diretivas antecipadas de vontade no contexto hospitalar. Rev Gaúch Enferm [Internet]. 2018 [acesso 25 out 2022];38(4):e65617. DOI: 10.1590/1983-1447.2017.04.65617,1313. Costa TNM, Caldato MCF, Furlaneto IP. Percepção de formandos de medicina sobre a terminalidade da vida. Rev. bioét. (Impr.) [Internet]. 2020 [acesso 25 out 2022];27(4):661-73. DOI: 10.1590/1983-80422019274349

14. Ferreira JMG, Nascimento JL, Sá FC. Profissionais de saúde: um ponto de vista sobre a morte e a distanásia. Rev Bras Educ Méd [Internet]. 2018 [acesso 25 out 2022];42(3):87-96. DOI: 10.1590/1981-52712015v42n3rb20170134
https://doi.org/10.1590/1981-52712015v42...

15. Gomes BMM, Salomão LA, Simões AC, Rebouças BO, Dadalto L, Barbosa MT. Diretivas antecipadas de vontade em geriatria. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 25 out 2022];26(3):429-39. DOI: 10.1590/1983-80422018263263
-1616. Kulicz MJ, Amarante DF, Nakatani HTI, Arai Filho C, Okamoto CT. Terminalidade e testamento vital: o conhecimento de estudantes de medicina. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 25 out 2022];26:420-8. DOI: 10.1590/1983-80422018263262,1818. Mendes MVG, Silva JCO, Ericeira MAL, Pinheiro AN. Testamento vital: conhecimentos e atitudes de alunos internos de um curso de medicina. Rev Bras Educ Méd [Internet]. 2019 [acesso 25 out 2022];43(2):25-31. DOI: 10.1590/1981-52712015v43n2RB20180117,2020. Oneti CF, Oliveira Barreto DM, Martins EL. Percepção dos profissionais de enfermagem frente à prática da distanásia e ortotanásia. Enferm Foco [Internet]. 2017 [acesso 25 out 2022];8(2):42-6. Disponível: https://bit.ly/3X7vh5U
https://bit.ly/3X7vh5U...
,2121. Pereira EAL, Rangel AB, Giffoni JCG. Identificação do nível de conhecimento em cuidados paliativos na formação médica em uma escola de medicina de Goiás. Rev Bras Educ Med [Internet]. 2019 [acesso 25 out 2022];43(4):65-71. DOI: 10.1590/1981-52712015v43n4RB20180116,2424. Saioron I, Ramos FRS, Amadigi FR, Diaz PS. Diretivas antecipadas de vontade: desafios legais e educacionais na visão de enfermeiros. Rev Eletrônica Enferm [Internet]. 2017 [acesso 25 out 2022];19:a44. DOI: 10.5216/ree.v19.43587,2525. Santana JCB, Dutra BS, Carlos JMM, Barros JKA. Ortotanásia nas unidades de terapia intensiva: percepção dos enfermeiros. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25(1):158-67. DOI: 10.1590/1983-80422017251177, a topic that should be known by health professionals and the population 2222. Pirôpo US, Damasceno RO, Rosa RS, Sena ELS, Yarid SD, Boery RNSO. Interface do testamento vital com a bioética, atuação profissional e autonomia do paciente. Rev Salud Pública [Internet]. 2018 [acesso 25 out 2022];20(4):505-10. DOI: 10.15446/rsap.v20n4.65009. According to Moreira and collaborators 22. Moreira MADM, Costa SFG, Cunha MLDM, Zaccara AAL, Negro-Dellacqua M, Dutra F. Testamento vital na prática médica: compreensão dos profissionais. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25:168-78. DOI: 10.1590/1983-80422017251178, physicians must be able to instruct patients on the procedures that may or may not be denied and their implications, thus ensuring that patients make conscious and informed decisions.

Saioron and collaborators 2424. Saioron I, Ramos FRS, Amadigi FR, Diaz PS. Diretivas antecipadas de vontade: desafios legais e educacionais na visão de enfermeiros. Rev Eletrônica Enferm [Internet]. 2017 [acesso 25 out 2022];19:a44. DOI: 10.5216/ree.v19.43587 demonstrate that the lack of knowledge of the directives and the lack of legal protection, associated to the deficient approach to terminality during academic training, traditionally focused on curativism, expose a complex and challenging reality experienced by nursing professionals who work with patients in the process of dying, which leads to insecurity in these professionals and limits the work with palliative care.

In a study conducted with 100 cancer patients, 85% of them were unaware of the living will and/or the advance directives, 81% were unaware of palliative care and 70% were unaware of the do-not-resuscitate order. After being clarified about the terms used, 62% would agree to prepare a living will and/or advance directives, 82% would agree to receive home palliative care; and 64% would agree to be resuscitated in any situation, but the majority (73%) disagreed as to the practice of dysthanasia 1212. Comin LT, Panka M, Beltrame V, Steffani JA, Bonamigo EL. Percepción de los pacientes oncológicos sobre la terminalidad de la vida. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25(2):392-401. DOI: 10.1590/1983-80422017252199.

Similarly, Scottini, Siqueira and Moritz 2626. Scottini MA, Siqueira JE, Moritz RD. Direito dos pacientes às diretivas antecipadas de vontade. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 25 out 2022];26(3):440-50. DOI: 10.1590/1983-80422018263264 investigated the knowledge of 55 patients with terminal diseases about their diagnosis and prognosis, and the possibility of recording their desires at the end of life in the form of advance directives. Of these, only one was aware of the subject and had registered them, and three of them, after dialogue with the researcher, expressed interest in formalizing them. The others declared that they had no opportunity to talk about the topic.

In the absence of true and understandable information, the patient or family member will not be able to decide on their consent or on the therapeutic proposal. In the lack of an understanding of the information offered, the consent becomes invalid. The declaration in advance is consent for the medical act in which it is decided, at the present moment, on a situation that will be experienced in the future, and the subject of the dying process is of valuable gravity.

In this line of reasoning, Moreira and collaborators 22. Moreira MADM, Costa SFG, Cunha MLDM, Zaccara AAL, Negro-Dellacqua M, Dutra F. Testamento vital na prática médica: compreensão dos profissionais. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25:168-78. DOI: 10.1590/1983-80422017251178, who evaluated the introduction of the advance directives or living will in medical practice, suggest that the physician should recommend that the patient share their decisions about the desired or refuted procedures with their family members and trusted friends.

Advance directives, as a rule, bind physicians and family members to the patient’s will. Thus, it is pertinent that, during the writing of a document of this nature, a competent physician is present and there is an affinity between all those involved in the process 4545. Serrao D. Requisitos para um bom testamento vital. Revista Portuguesa de Filosofia [Internet]. 2011 [acesso 25 out 2022];67(3):619-29. Disponível: https://bit.ly/3TL87j1
https://bit.ly/3TL87j1...
.

According to Cogo and Lunardi 99. Cogo SB, Lunardi VL. Diretivas antecipadas: uma análise documental no contexto mundial. Texto Contexto Enferm [Internet]. 2018 [acesso 25 out 2022];27(3):e1880014. DOI: 10.1590/0104-070720180001880014, knowing the legislation in force in different countries corroborates the understanding that it is essential to adhere to the advance directives, in order to prevent people who are unaware of the subject from suffering unnecessarily in the future because they have not registered their will. It is necessary to legalize the practice, in order to avoid actions that may become illegal, due to the poor protection that the Brazilian resolution provides. Although it is not law and is restricted to a certain professional class, CFM Resolution 1,995/2012, as pointed out by Monteiro and Silva 1919. Monteiro RSF, Silva AG Jr. Diretivas antecipadas de vontade: percurso histórico na América Latina. Rev. bioét. (Impr.) [Internet]. 2019 [acesso 25 out 2022];27(1):86-97. DOI: 10.1590/1983-80422019271290, represented an important advance.

Lima 1717. Lima MA. Testamento vital à luz do ordenamento jurídico brasileiro e o princípio pro homine. Cad Iberoamer Dir Sanit [Internet]. 2018 [acesso 25 out 2022];7(1):12-28. DOI: 10.17566/ciads.v7i1.422 states that, if the living will was prepared at the time when the person was conscious of their actions and was able to discern about their will, preceding a state of terminality, the family and professionals must recognize and respect the autonomy of this patient.

Final considerations

This review approached the lack of consensus in the legal sphere due to the lack of regulation establishing clear rules for the preparation of a Brazilian model of advance directives that can be attached to the patient’s medical record. Thus, it is considered that it is not enough to guarantee that individuals have the right to express their will, it is also necessary to ensure that it will be fulfilled, and to provide security on the part of the health professionals involved, family members and patients.

In addition, it is essential that professionals have full knowledge of the subject to inform and instruct their patients correctly. Therefore, it is necessary to expand discussions on the subject, with emphasis on the Brazilian reality.

Referências

  • 1
    Piccini CF, Steffani JA, Bonamigo ÉL, Bortoluzzi MC, Schlemper BR Jr. Testamento vital na perspectiva de médicos, advogados e estudantes. Bioethikos [Internet]. 2011 [acesso 25 out 2022];5(4):384-91. Disponível: https://bit.ly/3AqAjAS
    » https://bit.ly/3AqAjAS
  • 2
    Moreira MADM, Costa SFG, Cunha MLDM, Zaccara AAL, Negro-Dellacqua M, Dutra F. Testamento vital na prática médica: compreensão dos profissionais. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25:168-78. DOI: 10.1590/1983-80422017251178
  • 3
    Junges JR, Cremonese C, Oliveira EA, Souza LL, Backes V. Reflexões legais e éticas sobre o final da vida: uma discussão sobre a ortotanásia. Rev. bioét. (Impr.) [Internet]. 2010 [acesso 25 out 2022];18(2):275-88. Disponível: https://bit.ly/3hOVzcW
    » https://bit.ly/3hOVzcW
  • 4
    Nunes R. Proposta sobre suspensão e abstenção de tratamento em doentes terminais. Rev. bioét. (Impr.) [Internet]. 2009 [acesso 25 out 2022];17(1):29-39. Disponível: https://bit.ly/3gblHOT
    » https://bit.ly/3gblHOT
  • 5
    Cardoso B, Chemin BF. O testamento vital diante do direito à vida. Destaques Acadêmicos [Internet]. 2018 [acesso 25 out 2022];10(2):34-52. DOI: 10.22410/issn.2176-3070.v10i2a2018.1709
  • 6
    Dadalto L. A necessidade de um modelo de diretivas antecipadas de vontade para o Brasil: estudo comparativo dos modelos português e franceses. Revista M [Internet]. 2016 [acesso 25 out 2022];1(2):443-60. DOI: 10.9789/2525-3050.2016.v1i2.443-460
  • 7
    Cano CWA, Silva ALC, Barboza AF, Bazzo BF, Martins CP, Iandoli D Jr et al. Finitude da vida: compreensão conceitual da eutanásia, distanásia e ortotanásia. Rev. bioét. (Impr.) [Internet]. 2020 [acesso 25 out 2022];28:376-83. DOI: 10.1590/1983-80422020282399
  • 8
    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 25 out 2022];9:e34. DOI: 10.5902/2179769233083
  • 9
    Cogo SB, Lunardi VL. Diretivas antecipadas: uma análise documental no contexto mundial. Texto Contexto Enferm [Internet]. 2018 [acesso 25 out 2022];27(3):e1880014. DOI: 10.1590/0104-070720180001880014
  • 10
    Cogo SB, Lunardi VL, Nietsche EA. Considerações acerca da atuação do enfermeiro na aplicabilidade das diretivas antecipadas de vontade. Enferm Foco [Internet]. 2017 [acesso 25 out 2022];8(2):26-30. Disponível: https://bit.ly/3hFmXtM
    » https://bit.ly/3hFmXtM
  • 11
    Cogo SB, Lunardi VL, Quintana AM, Girardon-Perlini NMO, Silveira RS. Assistência ao doente terminal: vantagens na aplicabilidade das diretivas antecipadas de vontade no contexto hospitalar. Rev Gaúch Enferm [Internet]. 2018 [acesso 25 out 2022];38(4):e65617. DOI: 10.1590/1983-1447.2017.04.65617
  • 12
    Comin LT, Panka M, Beltrame V, Steffani JA, Bonamigo EL. Percepción de los pacientes oncológicos sobre la terminalidad de la vida. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25(2):392-401. DOI: 10.1590/1983-80422017252199
  • 13
    Costa TNM, Caldato MCF, Furlaneto IP. Percepção de formandos de medicina sobre a terminalidade da vida. Rev. bioét. (Impr.) [Internet]. 2020 [acesso 25 out 2022];27(4):661-73. DOI: 10.1590/1983-80422019274349
  • 14
    Ferreira JMG, Nascimento JL, Sá FC. Profissionais de saúde: um ponto de vista sobre a morte e a distanásia. Rev Bras Educ Méd [Internet]. 2018 [acesso 25 out 2022];42(3):87-96. DOI: 10.1590/1981-52712015v42n3rb20170134
    » https://doi.org/10.1590/1981-52712015v42n3rb20170134
  • 15
    Gomes BMM, Salomão LA, Simões AC, Rebouças BO, Dadalto L, Barbosa MT. Diretivas antecipadas de vontade em geriatria. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 25 out 2022];26(3):429-39. DOI: 10.1590/1983-80422018263263
  • 16
    Kulicz MJ, Amarante DF, Nakatani HTI, Arai Filho C, Okamoto CT. Terminalidade e testamento vital: o conhecimento de estudantes de medicina. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 25 out 2022];26:420-8. DOI: 10.1590/1983-80422018263262
  • 17
    Lima MA. Testamento vital à luz do ordenamento jurídico brasileiro e o princípio pro homine. Cad Iberoamer Dir Sanit [Internet]. 2018 [acesso 25 out 2022];7(1):12-28. DOI: 10.17566/ciads.v7i1.422
  • 18
    Mendes MVG, Silva JCO, Ericeira MAL, Pinheiro AN. Testamento vital: conhecimentos e atitudes de alunos internos de um curso de medicina. Rev Bras Educ Méd [Internet]. 2019 [acesso 25 out 2022];43(2):25-31. DOI: 10.1590/1981-52712015v43n2RB20180117
  • 19
    Monteiro RSF, Silva AG Jr. Diretivas antecipadas de vontade: percurso histórico na América Latina. Rev. bioét. (Impr.) [Internet]. 2019 [acesso 25 out 2022];27(1):86-97. DOI: 10.1590/1983-80422019271290
  • 20
    Oneti CF, Oliveira Barreto DM, Martins EL. Percepção dos profissionais de enfermagem frente à prática da distanásia e ortotanásia. Enferm Foco [Internet]. 2017 [acesso 25 out 2022];8(2):42-6. Disponível: https://bit.ly/3X7vh5U
    » https://bit.ly/3X7vh5U
  • 21
    Pereira EAL, Rangel AB, Giffoni JCG. Identificação do nível de conhecimento em cuidados paliativos na formação médica em uma escola de medicina de Goiás. Rev Bras Educ Med [Internet]. 2019 [acesso 25 out 2022];43(4):65-71. DOI: 10.1590/1981-52712015v43n4RB20180116
  • 22
    Pirôpo US, Damasceno RO, Rosa RS, Sena ELS, Yarid SD, Boery RNSO. Interface do testamento vital com a bioética, atuação profissional e autonomia do paciente. Rev Salud Pública [Internet]. 2018 [acesso 25 out 2022];20(4):505-10. DOI: 10.15446/rsap.v20n4.65009
  • 23
    Pittelli SD, Oliveira RA, Nazareth JC. Diretivas antecipadas de vontade: proposta de instrumento único. Rev. bioét. (Impr.) [Internet]. 2021 [acesso 25 out 2022];28:604-9. DOI: 10.1590/1983-80422020284423
  • 24
    Saioron I, Ramos FRS, Amadigi FR, Diaz PS. Diretivas antecipadas de vontade: desafios legais e educacionais na visão de enfermeiros. Rev Eletrônica Enferm [Internet]. 2017 [acesso 25 out 2022];19:a44. DOI: 10.5216/ree.v19.43587
  • 25
    Santana JCB, Dutra BS, Carlos JMM, Barros JKA. Ortotanásia nas unidades de terapia intensiva: percepção dos enfermeiros. Rev. bioét. (Impr.) [Internet]. 2017 [acesso 25 out 2022];25(1):158-67. DOI: 10.1590/1983-80422017251177
  • 26
    Scottini MA, Siqueira JE, Moritz RD. Direito dos pacientes às diretivas antecipadas de vontade. Rev. bioét. (Impr.) [Internet]. 2018 [acesso 25 out 2022];26(3):440-50. DOI: 10.1590/1983-80422018263264
  • 27
    Alves CA, Fernandes MS, Goldim JR. Diretivas antecipadas de vontade: um novo desafio para a relação médico-paciente. Clin Biomed Res [Internet]. 2012 [acesso 25 out 2022];32(3):358-362. Disponível: https://bit.ly/3hOZarE
    » https://bit.ly/3hOZarE
  • 28
    Pessini L, Hossne WS. Terminalidade da vida e o novo Código de Ética Médica. Bioethikos [Internet]. 2010 [acesso 25 out 2022];4(2):127-9. Disponível: https://bit.ly/3Ef1e3t
    » https://bit.ly/3Ef1e3t
  • 29
    Dadalto L. Reflexos jurídicos da Resolução CFM 1.995/12. Rev. bioét. (Impr.) [Internet]. 2013 [acesso 25 out 2022];21:106-12. Disponível: https://bit.ly/3UIj0Di
    » https://bit.ly/3UIj0Di
  • 30
    Bussinguer ECA, Barcellos IA. O direito de viver a própria morte e sua constitucionalidade. Ciênc Saúde Colet [Internet]. 2013 [acesso 25 out 2022];18(9):2691-8. DOI: 10.1590/S1413-81232013000900024
  • 31
    Dadalto L, coordenadora. Diretivas antecipadas de vontade: ensaios sobre o direito à autodeterminação. Belo Horizonte: Letramento; 2013.
  • 32
    Furtado GR. Considerações sobre o testamento vital. Civilistica [Internet]. 2013 [acesso 25 out 2022];2(2):1-20. Disponível: https://bit.ly/3hPr5Yq
    » https://bit.ly/3hPr5Yq
  • 33
    Lingerfelt D, Hupsel L, Macedo L, Mendonça M, Ribeiro R, Gusmão Y, Moura Y. Terminalidade da vida e diretiva antecipadas de vontade do paciente. Direito UNIFACS: Debate Virtual [Internet]. 2013 [acesso 25 out 2022];(152). Disponível: https://bit.ly/3TJ6W3m
    » https://bit.ly/3TJ6W3m
  • 34
    Mallet MT. Testamento vital [trabalho de conclusão de curso] [Internet]. Porto Alegre: Pontifícia Universidade Católica do Rio Grande do Sul; 2015 [acesso 25 out 2022]. Disponível: https://bit.ly/3V2M7kr
    » https://bit.ly/3V2M7kr
  • 35
    Diniz MH. O estado atual do biodireito. São Paulo: Saraiva; 2014. p. 1-12.
  • 36
    Barroso LR, Martel LCV. A morte como ela é: dignidade e autonomia individual no final da vida. ConJur [Internet]. 2012 [acesso 25 out 2022]. Disponível: https://bit.ly/3V1fPGA
    » https://bit.ly/3V1fPGA
  • 37
    Batista KT, Seidl EMF. Estudo acerca de decisões éticas na terminalidade da vida em unidade de terapia intensiva. Comun Ciênc Saúde [Internet]. 2011 [acesso 25 out 2022];22(1):51-60. Disponível: https://bit.ly/3V68i9o
    » https://bit.ly/3V68i9o
  • 38
    Chehuen Neto J, Ferreira R, Silva N, Delgado A, Tabet C, Almeida G. Testamento vital: o que pensam profissionais de saúde? Rev. bioét. (Impr.) [Internet]. 2015 [acesso 25 out 2022];23(3):572-82. DOI: 10.1590/1983-80422015233094
  • 39
    Saunders C. A personal therapeutic journey. BMJ [Internet]. 1996 [acesso 25 out 2022];313(7072):1599-601. DOI: 10.1136/bmj.313.7072.1599
  • 40
    Rajagopal M, Palat G. Kerala, India: status of cancer pain relief and palliative care. J Pain Symptom Manage [Internet]. 2002 [acesso 25 out 2022];24(2):191-3. DOI: 10.1016/s0885-3924(02)00441-4
  • 41
    Chaves JHB, Mendonça VLG, Pessini L, Rego G, Nunes R. Cuidados paliativos na prática médica: contexto bioético. Rev Dor [Internet]. 2011 [acesso 25 out 2022];12(3):250-5. DOI: 10.1590/S1806-00132011000300011
  • 42
    Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford: Oxford University Press; 2001.
  • 43
    Gordon EJ, Daugherty CK. ‘Hitting you over the head’: oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics [Internet]. 2003 [acesso 25 out 2022];17(2):142-68. Disponível: https://bit.ly/3Od02SM
    » https://bit.ly/3Od02SM
  • 44
    Dias HW, Castro Oliviera GPT, Correia IS. Testamento vital: dos cuidados paliativos a sua legitimidade diante do direito à vida. Humanidades & Inovação [Internet]. 2020 [acesso 25 out 2022];7(19):610-23. Disponível: https://bit.ly/3Gm2TXR
    » https://bit.ly/3Gm2TXR
  • 45
    Serrao D. Requisitos para um bom testamento vital. Revista Portuguesa de Filosofia [Internet]. 2011 [acesso 25 out 2022];67(3):619-29. Disponível: https://bit.ly/3TL87j1
    » https://bit.ly/3TL87j1

Publication Dates

  • Publication in this collection
    20 Feb 2023
  • Date of issue
    Oct-Dec 2022

History

  • Received
    10 Mar 2022
  • Reviewed
    4 Oct 2022
  • Accepted
    24 Oct 2022
Conselho Federal de Medicina SGAS 915, lote 72, CEP 70390-150, Tel.: (55 61) 3445-5932, Fax: (55 61) 3346-7384 - Brasília - DF - Brazil
E-mail: bioetica@portalmedico.org.br