Advance directives: patient autonomy and professional safety

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.

Advance directives: patient autonomy and professional safety In recent times, advances related to the wellbeing of terminal patients have prolonged the life duration of many people 1 .Thus, the dignity and autonomy of individuals in the terminal stage become elements that direct decision-making 2 at the end of life, a complex period for both individuals in the dying process and others involved 3 .
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 4 , which represents the freedom of choice in choosing which treatments they want or not to receive 5 .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 6 .
Given the great divergence between concepts and the absence of greater legal certainty that supports physician and patient in decisionmaking 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).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).

Results and discussion
This study was developed with data from 21 references, two review articles, one update article and 18 original articles (Chart 1).
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.
Chart 1. Overview of the main information of the studies surveyed in the review

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 27 .
According to Pessini and Hossne 28 , 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 29 , 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 30 .

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 31,32 .
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, http://dx.doi.org/10.1590/1983-80422022304568EN Advance directives: patient autonomy and professional safety 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 31,32 .
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 33 .
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 34 , 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 35 .Assisted suicide consists in the patient ending their own life with the help or assistance of a third party 36 .
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 33 .
Given the lack of regulation on the subject, CFM Resolution 1,955/2012 was created to provide security to physicians 29 .According to Lima 17 , 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 35 .
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 37 .
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 7 .As noted by Chehuen Neto and collaborators 38 , 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 31 , 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 39 .
According to Rajagopal and Palat 40 , 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 41 .
In this discussion, it is necessary to consider the principles of bioethics proposed by Beauchamp and Childress 42 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 by the disease itself (non-maleficence), and self-determination will be compromised (autonomy) 43 .
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 44 .

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 17 , 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 31 .
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 29 , 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 34 , 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 23 .
Lingerfelt and collaborators 33 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 2,7,8,10,11,[13][14][15][16]18,20,21,24,25 , a topic that should be known by health professionals and the population 22 . According to Mreira and collaborators 2 , 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 24 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 12 .http://dx.doi.org/10.1590/1983-80422022304568EN Advance directives: patient autonomy and professional safety Similarly, Scottini, Siqueira and Moritz 26 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 2 , 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 45 .
According to Cogo and Lunardi 9 , 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 19 , represented an important advance.
Lima 17 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. http://dx.doi.org/10.1590/1983-80422022304568EN

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