Advance directives and palliative care: Brazilian perception

Borges, Lizandra Saraiva; Lima, Maria Juliana Vieira

doi:10.1590/1983-803420243636EN

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Sumário

RESEARCH • Rev. Bioét. 32 • 2024 • https://doi.org/10.1590/1983-803420243636EN copy

Advance directives and palliative care: Brazilian perception

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Abstract

Advance directives are considered a fundamental component of health care planning, a resource commonly used by palliative care teams. Given the importance of the care network for patients with incurable and life-threatening diseases, this study aims to investigate the understanding that health professionals, patients, and caregivers have of the subject, in addition to understanding how the subject is conceptualized, identifying convergences and divergences in the discourses and how these notions can influence the quality of care. We opted for an integrative review of the scientific literature,

in which eight articles were selected and analyzed. Priority was given to dividing the discussion into three descriptive topics and analyzing them critically. Thus, the need to continue debating this topic is evident in order to ensure the development of patient-centered behaviors that take into account their socioeconomic conditions and personal values.

Keywords
Advance directives; Palliative care; Terminal care; Medical ethics

Search Platforms	Search details
CAPES Journal Portal	tw:(“diretivas antecipadas de vontade” OR “diretivas antecipadas” OR “testamento vital” AND “cuidados paliativos”) AND db:(“SCIELO”) AND (year_cluster:[2013 TO 2023])
Virtual Health Library	tw:(“diretivas antecipadas de vontade” OR “diretivas antecipadas” OR “testamento vital” AND “cuidados paliativos”) AND (collection:(“06-national/BR” OR “05-specialized”) OR db:(“LILACS” OR “MEDLINE”)) AND (year_cluster:[2011 TO 2023])
PubMed	tw:(“advance care planning” OR “advanced care” OR “living will” AND “palliative care” AND “brazil” [db: “MEDLINE”](year_cluster:[2011 TO 2023])

Articles identified in the databases based on the inclusion criteria:
Medline=20 \| LILACS=23 \| SciELO=17 TOTAL=60
↓
Duplicate=15	Eliminated by exclusion criteria=37
↓
Articles selected for analysis=8

Author (year); article title	Objective	Type of study/participants	Conceptualization of ADs	Study contributions/results
Silva and collaborators, 2015. Conhecimento de estudantes de medicina sobre o testamento vital	Assess the understanding of medical students at the State University of Pará (UEPA) about LW and decisions involving the end of life.	Descriptive cross-sectional study with a qualitative and quantitative nature; students (n=238) interviewed using a ten-question questionnaire.	Document written by a person in full possession of their mental faculties. Its purpose is to specify the care, treatments, and procedures they wish or not to receive when affected by a serious illness and cannot freely express their wishes.	Only 8% of students clearly understood the meaning of “living will.” Despite this, after listening to the definition of ADs provided by the researchers, 92% declared that they respected the provisions of the living will.
Moreira and collaborators, 2017. Testamento vital na prática médica: compreensão dos profissionais	Study the opinion of resident physicians regarding inserting the patient’s ADs or LW in medical practice.	Exploratory study of a qualitative nature with 36 physicians interviewed.	Document expressing the types of treatment the patient wishes to receive from healthcare professionals and caregivers during the terminal stage of life, recorded with mental lucidity and complete autonomy to deliberate about themselves, and with preserved quality of life.	Most physicians interviewed believe that LW is an instrument capable of guaranteeing a dignified death. Thus, they defend the creation of legal provisions that regulate formal use in Brazil.
Comin and collaborators, 2017. Percepção de pacientes oncológicos sobre a terminalidade da vida	Analyze the perception of cancer patients regarding the end of life.	Descriptive study using a questionnaire for oncology patients (n=100).	Document that records the wishes of how sick people would like to be treated when they are at the end of their lives, allowing them to lead their dying process and have dignity at that moment.	85% of participants were unaware of LW/ADs, 81% of palliative care, and 70% of the do-not-resuscitate order. The need to encourage discussion about terminal illness during patient care was verified.
Gomes and collaborators, 2018. Diretivas antecipadas de vontade em geriatria	Evaluate the understanding of elderly companions, professors, and medical students on the definition and implementation of ADs.	Cross-sectional descriptive study of a quantitative nature, in which companions of older people (n=66), professors (n=60), and medical students (n=72) were interviewed (n=72).	The ADs represent the patient’s willingness to undergo medical treatment through the LW and the lasting mandate.	Elderly companions proved to be the group with the slightest knowledge about the topic. 40% of those interviewed demonstrated their intention to register ADs, with the majority being students to whom the concept was introduced.
Scottini and collaborators, 2018. Direito dos pacientes às diretivas antecipadas de vontade	Investigate the knowledge that patients with terminal illnesses had about their diagnosis, prognosis, and the possibility of recording their wishes at the end of life in the form of ADs.	Cross-sectional and descriptive study of a qualitative and quantitative nature conducted with patients (n=55) diagnosed with terminal illnesses.	Document that records the wishes of how sick people would like to be treated in terminal conditions, allowing them to lead their dying process and have dignity in this unique moment of their existence.	Most patients with preserved mental functions were found to have good knowledge of the disease diagnosis (95%). However, a significant number of these (69%) were never instructed by reference professionals to perform their ADs.
Chaves and collaborators, 2021. Cuidados paliativos: conhecimento de pacientes oncológicos e seus cuidadores	Verify the perception of palliative care, ADs, and do-not-resuscitate orders of cancer patients and their caregivers and their relationship with healthcare professionals.	Descriptive, quantitative study conducted with cancer patients (n=100) and caregivers (n=100) using a form.	The ADs are a set of desires, previously and expressly expressed by the patient, about the care and treatments that they want or not to receive at the time when they are unable to express, freely and autonomously, their wishes.	While most patients and caregivers report good medical support, most of them are unaware of terms such as “Palliative Care” (78%), “do not resuscitate order” (85%), and “living will” (96%).
Dias and collaborators, 2022. Advance care planning and goals of care discussion: the perspectives of Brazilian oncologists	Explore the difficulties faced by Brazilian oncologists in preparing ADs.	Cross-sectional study with a quantitative and qualitative approach developed to identify Brazilian oncologists’ barriers to discussing goals of care and ADs.	ADs are an instrument that allows respect for patient autonomy. It involves exploring values, beliefs, and what is most important to each person: ensuring agreement between the clinical care received and the patient’s wishes.	Identifying barriers that limit discussion of ADs and early referrals to palliative care can undoubtedly help prioritize the next steps for future studies aimed at improving ACP and help physicians better support patients through shared decision-making based on the patient’s values and experiences.
Fusculim and collaborators, 2022. Diretivas antecipadas de vontade: amparo bioético às questões éticas em saúde	Analyze the current context of ADs implementation in Brazil based on the participants’ perceptions.	Exploratory, cross-sectional study with a quantitative approach, with the participation of physicians (n=90) and nurses (n=51).	It involves understanding values, beliefs, and what is most important for each person: ensuring agreement between the clinical care received and the patient’s wishes.	Professionals with training in palliative care had greater knowledge of ADs and greater ease in accepting and implementing them. Among those who responded that they were afraid of applying the ADs, the majority said that this concern was related to legal issues, and the others to ethical issues.

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[1] Correspondence Lizandra Saraiva Borges – Rua Dr. Batista de Oliveira, 780, Papicu CEP 60192-340. Fortaleza/CE, Brasil.