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Palliative care in primary health care: scoping review

Abstracts

Objective:

to map the available evidence on the main topics investigated in palliative care in primary health care.

Method:

scoping review type study carried out in five databases, including original articles, based on the descriptors palliative care, palliative care at the end of life, terminal care, terminal state, primary health care and their respective acronyms and synonyms, totaling 18 publications. The extraction of data from primary studies was performed using an instrument produced by the authors and which allowed the construction of the categories presented.

Results:

18 publications were included in this review. Among the most studied themes are the difficulties of the teams regarding the continuity of care in the health network; the importance of in-service education by the multidisciplinary team; professional unpreparedness; bioethics; the validation and application of scales for prognosis and care for some pathologies such as cancer and diabetes; among others.

Conclusion:

it became evident that palliative care in primary health care has been gradually developed, but it is necessary to consider the organization of primary health care and the social policies that support or weaken it, being considered a complex challenge.

Descriptors:
Palliative Care; Terminal Care; Hospice Care; Critical Illness; Primary Health Care; Review


Objetivo:

mapear as evidências disponíveis sobre os principais temas investigados em cuidados paliativos na atenção primária à saúde.

Método:

estudo do tipo scoping review realizado em cinco bases de dados, sendo incluídos artigos originais, a partir dos descritores cuidados paliativos, cuidados paliativos na terminalidade da vida, assistência terminal, estado terminal, atenção primária à saúde e seus respectivos acrônimos e sinônimos, totalizando 18 publicações. A extração dos dados dos estudos primários foi realizada por meio de instrumento produzido pelas autoras e que permitiu construir as categorias apresentadas.

Resultados:

foram incluídas 18 publicações nesta revisão. Dentre os temas mais estudados estão as dificuldades das equipes quanto à continuidade de cuidados na rede de saúde; a importância da educação em serviço da equipe multiprofissional; o despreparo profissional; a bioética; a validação e aplicação de escalas para prognóstico e cuidados voltados para algumas patologias como câncer e diabetes; dentre outros.

Conclusão:

evidenciou-se que os cuidados paliativos na atenção primária à saúde vêm sendo gradativamente desenvolvidos, mas há que se considerar o modo de organização da atenção primária à saúde e as políticas sociais que as sustentam ou enfraquecem, sendo considerado um desafio complexo.

Descritores:
Cuidados Paliativos; Assistência Terminal; Cuidados Paliativos na Terminalidade da Vida; Estado Terminal; Atenção Primária à Saúde; Revisão


Objetivo:

mapear las evidencias disponibles sobre los principales temas investigados sobre cuidados paliativos en la atención primaria a la salud.

Método:

estudio de tipo scoping review, realizado en cinco bases de datos, habiéndose incluido artículos originales, a partir de los descriptores: cuidados paliativos; cuidados paliativos en el término de la vida; asistencia terminal; estado terminal; y, atención primaria a la salud y sus respectivos acrónimos y sinónimos, totalizando 18 publicaciones. La extracción de los datos de los estudios primarios fue realizada por medio de instrumento producido por las autoras, él que permitió construir las categorías presentadas.

Resultados:

en esta revisión fueron incluidas 18 publicaciones. Entre los temas más estudiados están: dificultades de los equipos en cuanto a la continuidad de cuidados en la red de salud; importancia de la educación durante el servicio del equipo multiprofesional; falta de preparación profesional; bioética; validación y aplicación de escalas para pronóstico; y, cuidados dirigidos para algunas patologías como cáncer y diabetes - entre otros.

Conclusión:

se evidenció que los cuidados paliativos en la atención primaria a la salud están siendo gradualmente desarrollados, pero es necesario considerar el modo de organización de la atención primaria a la salud y las políticas sociales que las sustentan o debilitan; lo que es considerado un desafío complejo.

Descriptores:
Cuidados Paliativos; Cuidado Terminal; Cuidados Paliativos al Final de la Vida; Enfermedad Crítica; Atención Primaria de Salud; Revisión


Introduction

The most recent definition of Palliative Care (PC) was published in 2018 and developed after a large project involving more than 400 members from 88 countries of the International Association for Hospice & Palliative Care (IAHPC), an association that maintains close ties and official relations with the World Health Organization (WHO)(11 International Association for Hospice Palliative Care. Global Consensus-based palliative care definition. [Internet]. Houston, TX: The International Association for Hospice and Palliative Care; 2018 [cited May 05, 2019]. Available from: https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/
https://hospicecare.com/what-we-do/proje...
). Currently, PCs are defined as “active holistic care, offered to people of all ages who are in intense suffering related to their health, resulting from serious illness, especially those who are at the end of life. The objective of Palliative Care is, therefore, to improve the quality of life of patients, their families and their caregivers”(11 International Association for Hospice Palliative Care. Global Consensus-based palliative care definition. [Internet]. Houston, TX: The International Association for Hospice and Palliative Care; 2018 [cited May 05, 2019]. Available from: https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/
https://hospicecare.com/what-we-do/proje...
).

Thus, offering palliative care to people with serious illnesses takes into account not only the person, but everyone involved in the care. As a definition, serious illness is understood as “any acute or chronic illness and/or condition that causes a significant disability and that can lead to a condition of disability and/or weakness for a long period, or even death”(22 Kelley AS. Defining “Serious Illness”. J Palliat Med. [Internet]. 2014 [cited May 10, 2019];17(9):985. Available from: https://www.liebertpub.com/doi/pdf/10.1089/jpm.2014.0164
https://www.liebertpub.com/doi/pdf/10.10...
).

In Brazil, isolated discussions and initiatives in PC have been found since the 1970s. It is noteworthy, however, that it was in the 1990s that the first organized services began to appear(33 Cuidados Paliativos no Brasil. [Internet]. São Paulo: Instituto Paliar; 2019. [Acesso 5 mai 2019]. Disponível em: https://www.paliar.com.br/cuidados-paliativos
https://www.paliar.com.br/cuidados-palia...
). It is noteworthy that, in the 1980s, the life expectancy of Brazilians was 62.5 years(44 Instituto Brasileiro de Geografia e Estatística. Tábua completa de mortalidade para o Brasil - 2017: Breve análise da evolução da mortalidade no Brasil. [Internet]. 2018 [Acesso 5 mai 2019]. Disponive em: https://www.ibge.gov.br/estatisticas/sociais/populacao/9126-tabuas-completas-de-mortalidade.html?=&t=resultados
https://www.ibge.gov.br/estatisticas/soc...
). Currently, the reality is different, the numbers have increased, both life expectancy has risen to 76 years(44 Instituto Brasileiro de Geografia e Estatística. Tábua completa de mortalidade para o Brasil - 2017: Breve análise da evolução da mortalidade no Brasil. [Internet]. 2018 [Acesso 5 mai 2019]. Disponive em: https://www.ibge.gov.br/estatisticas/sociais/populacao/9126-tabuas-completas-de-mortalidade.html?=&t=resultados
https://www.ibge.gov.br/estatisticas/soc...
) and the number of services that provide palliative care in the country. This increase in life expectancy is the result of investments in public policies by the State, including the implantation and implementation of the Unified Health System (UHS).

Until August 2018, after a survey carried out by the National Academy of Palliative Care (NAPC), 177 palliative care services were identified, distributed in the five regions of Brazil. Of these, 58% (103 services) are concentrated in the Southeast region, 20% (36 services), in the Northeast region, 14% (25 services), in the South region, 5% (eight services), in the Midwest region, while only 3% (five services) are located in the North of the country(55 Academia Nacional de Cuidados Paliativos. Panorama dos Cuidados Paliativos no Brasil. [Internet]. 2018 [Acesso 5 mai 2019]. Disponívem em: https://paliativo.org.br/wp-content/uploads/2018/10/Panorama-dos-Cuidados-Paliativos-no-Brasil-2018.pdf
https://paliativo.org.br/wp-content/uplo...
).

As a result of the growth in the life expectancy of the population, there is an increase in the occurrence of Chronic-degenerative Noncommunicable Diseases (CNCDs), which make the demand for PC a contemporary public health problem. An integrative review(66 Silva MLSR. The role of Primary Health Care professionals in palliative care. Rev Bras Med Fam Comunidade. [Internet]. 2014 [cited May 7, 2019];9(30):45-53. Available from: https://www.rbmfc.org.br/rbmfc/article/view/718
https://www.rbmfc.org.br/rbmfc/article/v...
) on primary health care (PHC) and PC, held in 2014, aimed to understand the roles of PHC professionals in palliative care and pointed out that PHC can make a difference to patients and their families by having easy access to them, close to home, be able to carry out constant management of symptoms and sensitivity to the realities of the community: “Professionals monitor the aging and fragility of their patients, the efforts of families to accommodate the new care needs of their members, fears, financial insecurity and, therefore, cannot avoid this moment: it is exactly in situations like this that the full potential of PHC actions and the Family Health Strategy (FHS) becomes more evident. No other health service can stand side by side with these families with such property and face the path of palliation with constant presence, guidance and welcome”(66 Silva MLSR. The role of Primary Health Care professionals in palliative care. Rev Bras Med Fam Comunidade. [Internet]. 2014 [cited May 7, 2019];9(30):45-53. Available from: https://www.rbmfc.org.br/rbmfc/article/view/718
https://www.rbmfc.org.br/rbmfc/article/v...
).

A systematic review(77 Saito DYT, Zoboli ELCP. Palliative care and primary health care: scoping review. Rev Bioét. [Internet]. 2015 [cited May 7, 2019];23(3):593-607. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422015000300593
http://www.scielo.br/scielo.php?script=s...
), held in 2015 on palliative care and PHC, aimed to identify, in the view of health professionals, the ethical problems arising from practice in this context. The ethical problems detected were the scarcity of resources, the lack of knowledge about PC, the lack of communication skills, the difficulty of establishing limits in the clinical relationship, the work overload and the lack of support from the reference services. The authors concluded that, in order to incorporate PCs in PHC, specific norms and training are required, in addition to the culture of shared and co-responsible care(77 Saito DYT, Zoboli ELCP. Palliative care and primary health care: scoping review. Rev Bioét. [Internet]. 2015 [cited May 7, 2019];23(3):593-607. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422015000300593
http://www.scielo.br/scielo.php?script=s...
).

Therefore, in order to know the current panorama of palliative care in PHC and because there are no studies like this, which synthesize scientific evidence in relation to the theme, justifying this study and its importance, it is presented as an objective: to map the available evidence on the main topics investigated in palliative care in primary health care.

Method

This is a scoping review study, carried out based on a set of techniques in order to map knowledge on certain topics in a research field. It differs from systematic review because it aims to focus on broader themes and include studies with different designs(88 Levac D, Colquhoun H, O’Brien, KK. Scoping studies: advancing the methodology. Implementation Sci. [Internet]. 2010 [cited May 7, 2019];5(1):19. Available from: https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-5-69
https://implementationscience.biomedcent...
). The elaboration of the scoping review followed a process consisting of five stages: a) Identifying the research questions; b) Identify the relevant studies valid for the investigation; c) Selection of review studies; d) Mapping of data from studies included in the review; e) Confront, summarize and report the results(88 Levac D, Colquhoun H, O’Brien, KK. Scoping studies: advancing the methodology. Implementation Sci. [Internet]. 2010 [cited May 7, 2019];5(1):19. Available from: https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-5-69
https://implementationscience.biomedcent...
).

For this, the PICO strategy was used, acronym for Patient, Intervention, Comparison and Outcomes, for the definition of the following guiding question: “What evidence is available about palliative care in primary health care?”. For the construction of the aforementioned question and to carry out the search, the PICO strategy was stipulated as: P for Population, Patient or Problem (what evidence is available); I of Interest (palliative care) and Context CO (primary health care).

This review was conducted in the databases Medical Literature Analyzes and Retrieval System Online (PubMed/MEDLINE), Latin American and Caribbean Literature in Health Sciences (LILACS), Web of Science, Scopus and Cumulative Index to Nursing & Allied Health Literature (CINAHL). For this, the controlled and indexed descriptors were used for each of the databases in this review. For the combination of these, the boolean operators OR and AND were used.

From the research question, terms were selected in the Health Sciences Descriptors (DeCS) and terms in the Medical Subject Headings (MeSH) containing the appropriate descriptors for searching the databases. The controlled descriptors used were as follows: a) PubMed/MEDLINE: palliative care (synonym: palliative treatment), hospice care (synonym: hospice program), terminal care, critical illness, primary health care (MeSH); b) LILACS: palliative care (synonyms: palliative care, palliative treatment), palliative care at the end of life (synonyms: terminally ill care, palliative care for terminally ill patients, comfort care, intermittent care program, palliative care program), terminal assistance (synonym: terminal care), terminal care (synonym: terminal illness), Primary Health Care (synonyms: primary care, primary care in health, primary health care, basic care, basic health care, basic care in health, basic care, primary care, primary health care, primary care, primary health care and primary health care (DeCS); c) Web of Science; d) Scopus; e) CINAHL: Palliative care (synonym: palliative treatment), hospice care (synonym: hospice program), terminal care, critical illness, primary health care (MeSH).

For the selection of studies, the following inclusion criteria were considered: a) original research articles; b) made available in the full version; c) published in the period 2009 to 2019, the last ten years; d) Portuguese, French, Spanish and English languages.

Exclusion criteria were defined: a) studies whose theme palliative care is presented as a “recommendation” in the results and conclusions, not being configured as a central object of the study; b) dissertations, theses, public policies and videos. The search for jobs for primary research took place on April 27, 2019 via advanced form.

After identification, primary studies were selected, according to the guiding question and the previously defined inclusion and exclusion criteria. This step was carried out by two reviewers independently. The instrument, designed for the purpose of extracting and analyzing data from the included studies, was composed of the following items: 1- article identification; 2- object and/or question and/or objectives of the study; 3- type of study/design; 4- data production tools and/or techniques; 5- year; 6- magazine; 7- participants and/or sample; 8- main results; 9- area; 10- country. The stages of selection of the studies included the identification, screening, eligibility and inclusion.

The categorization was the form adopted for the analysis of the results in which it was extracted how the PC has been carried out in the PHC. The work of analyzing the studies consisted of a careful task. There was an interest in knowing and characterizing the panorama of the studies according to its investigated object. For the presentation of the data, we chose to build sequential figures that sought to demonstrate how the CP theme in PHC was studied by different authors.

Results

In the research, a total of 154 studies were found, 25 in LILACS, 112 in Web of Science, five in PubMed/MEDLINE, three in CINAHL, one in Scopus and three were identified by manual search. After proceeding with the inclusion and exclusion criteria, two successive evaluations and disregarding duplicate articles, 18 publications(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...

10 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...

11 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...

12 Cruz LFC, Estévez MJM, Turiño-Luquec JD. Diagnóstico de la astenia tumoral en Atención Primaria. Propuesta de correlación entre dos escalas. Med Paliat. [Internet]. 2012 [Acceso may 2019];19(1):24-30. Disponible en: http://dx.doi.org/10.1016/j.medipa.2010.09.002
http://dx.doi.org/10.1016/j.medipa.2010....

13 López AR. Validación de un modelo pronóstico de supervivencia basado en parámetros biológicos para pacientes con cáncer terminal atendidos en ámbito domiciliario. Med Paliat. [Internet]. 2013 [Acceso 5 may 2019];20(1):3-9. Disponible en: http://dx.doi.org/10.1016/j.medipa.2012.01.012
http://dx.doi.org/10.1016/j.medipa.2012....

14 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...

15 Calsina-Berna A, Millán NM, González-Barboteo J, Díaz LS, Sales JP. Prevalencia de dolor como motivo de consulta y su influencia en el sueño: experiencia en un centro de atención primaria. Aten Primaria. [Internet]. 2011 [Acceso 7 may 2019];43(11):568-76. Disponible en: http://dx.doi.org/10.1016/j.aprim.2010.09.006
http://dx.doi.org/10.1016/j.aprim.2010.0...

16 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...

17 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....

18 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...

19 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...

20 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...

21 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...

22 Paz CRP, Pessalacia JDR, Zoboli ELCP, Souza HL, Granja GF, Schveitzer MC. New demands for primary health care in Brazil: palliative care. Invest Educ Enferm. [Internet]. 2016 [cited May 05, 2019];34(1):46-57. Available from: http://dx.doi.org/10.17533/udea.iee.v34n1a06
http://dx.doi.org/10.17533/udea.iee.v34n...

23 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...

24 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...

25 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
-2626 Corrêa SR, Mazuko C, Mitchell G, Pastrana T, Lima L, Murray SA. Identifying patients for palliative care in primary care in Brazil: Project Estar ao Seu Lado’s experience. Rev Bras Med Fam Comunidade. [Internet]. 2017 [cited May 7, 2019];12(39):1-8. Available from: http://dx.doi.org/10.5712/rbmfc12(39)1507
http://dx.doi.org/10.5712/rbmfc12(39)150...
) were relevant for this review, since they met the study question and pre-established criteria, as explained in the analysis flowchart (Figure 1).

Figure 1
Flowchart of the study selection process for the review of the adapted scope of the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA). Ribeirão Preto, SP, Brazil, 2019

With regard to language, eleven studies analyzed were published in Portuguese(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...

10 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
-1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
,1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...

19 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...

20 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
-2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
,2323 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...

24 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...

25 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
-2626 Corrêa SR, Mazuko C, Mitchell G, Pastrana T, Lima L, Murray SA. Identifying patients for palliative care in primary care in Brazil: Project Estar ao Seu Lado’s experience. Rev Bras Med Fam Comunidade. [Internet]. 2017 [cited May 7, 2019];12(39):1-8. Available from: http://dx.doi.org/10.5712/rbmfc12(39)1507
http://dx.doi.org/10.5712/rbmfc12(39)150...
) and from Brazilian authors, five were published in Spanish(1212 Cruz LFC, Estévez MJM, Turiño-Luquec JD. Diagnóstico de la astenia tumoral en Atención Primaria. Propuesta de correlación entre dos escalas. Med Paliat. [Internet]. 2012 [Acceso may 2019];19(1):24-30. Disponible en: http://dx.doi.org/10.1016/j.medipa.2010.09.002
http://dx.doi.org/10.1016/j.medipa.2010....
-1313 López AR. Validación de un modelo pronóstico de supervivencia basado en parámetros biológicos para pacientes con cáncer terminal atendidos en ámbito domiciliario. Med Paliat. [Internet]. 2013 [Acceso 5 may 2019];20(1):3-9. Disponible en: http://dx.doi.org/10.1016/j.medipa.2012.01.012
http://dx.doi.org/10.1016/j.medipa.2012....
,1515 Calsina-Berna A, Millán NM, González-Barboteo J, Díaz LS, Sales JP. Prevalencia de dolor como motivo de consulta y su influencia en el sueño: experiencia en un centro de atención primaria. Aten Primaria. [Internet]. 2011 [Acceso 7 may 2019];43(11):568-76. Disponible en: http://dx.doi.org/10.1016/j.aprim.2010.09.006
http://dx.doi.org/10.1016/j.aprim.2010.0...

16 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...
-1717 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....
) and three in English(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
,1616 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...
,2222 Paz CRP, Pessalacia JDR, Zoboli ELCP, Souza HL, Granja GF, Schveitzer MC. New demands for primary health care in Brazil: palliative care. Invest Educ Enferm. [Internet]. 2016 [cited May 05, 2019];34(1):46-57. Available from: http://dx.doi.org/10.17533/udea.iee.v34n1a06
http://dx.doi.org/10.17533/udea.iee.v34n...
). Of the included studies, eight(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...

10 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
-1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
,1717 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....

18 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...

19 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...

20 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
-2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
) used the qualitative approach and ten, the quantitative(1212 Cruz LFC, Estévez MJM, Turiño-Luquec JD. Diagnóstico de la astenia tumoral en Atención Primaria. Propuesta de correlación entre dos escalas. Med Paliat. [Internet]. 2012 [Acceso may 2019];19(1):24-30. Disponible en: http://dx.doi.org/10.1016/j.medipa.2010.09.002
http://dx.doi.org/10.1016/j.medipa.2010....

13 López AR. Validación de un modelo pronóstico de supervivencia basado en parámetros biológicos para pacientes con cáncer terminal atendidos en ámbito domiciliario. Med Paliat. [Internet]. 2013 [Acceso 5 may 2019];20(1):3-9. Disponible en: http://dx.doi.org/10.1016/j.medipa.2012.01.012
http://dx.doi.org/10.1016/j.medipa.2012....

14 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...

15 Calsina-Berna A, Millán NM, González-Barboteo J, Díaz LS, Sales JP. Prevalencia de dolor como motivo de consulta y su influencia en el sueño: experiencia en un centro de atención primaria. Aten Primaria. [Internet]. 2011 [Acceso 7 may 2019];43(11):568-76. Disponible en: http://dx.doi.org/10.1016/j.aprim.2010.09.006
http://dx.doi.org/10.1016/j.aprim.2010.0...
-1616 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...
,2222 Paz CRP, Pessalacia JDR, Zoboli ELCP, Souza HL, Granja GF, Schveitzer MC. New demands for primary health care in Brazil: palliative care. Invest Educ Enferm. [Internet]. 2016 [cited May 05, 2019];34(1):46-57. Available from: http://dx.doi.org/10.17533/udea.iee.v34n1a06
http://dx.doi.org/10.17533/udea.iee.v34n...

23 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...

24 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...

25 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
-2626 Corrêa SR, Mazuko C, Mitchell G, Pastrana T, Lima L, Murray SA. Identifying patients for palliative care in primary care in Brazil: Project Estar ao Seu Lado’s experience. Rev Bras Med Fam Comunidade. [Internet]. 2017 [cited May 7, 2019];12(39):1-8. Available from: http://dx.doi.org/10.5712/rbmfc12(39)1507
http://dx.doi.org/10.5712/rbmfc12(39)150...
). As for the instruments / techniques for data collection/production, questionnaires, interviews, observation, discussion groups and application of scales were used. Among the study participants, the following were identified: health professionals; formal and informal caregivers; patients eligible for palliative care. Two studies, also, had sample of medical records of patients, according to Figure 2.

Figure 2
Summary of articles with authors, magazines and countries, type of study, instruments and/or techniques for data production, participants and/or sample of articles analyzed. Ribeirão Preto, SP, Brazil, 2019

The context of the studies was variable. Several experiences were found, such as: in daily life and patient care at home(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...
,1919 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...
); meaning of being a caregiver and on PC(1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
) for health professionals; evaluation of tumor asthenia(1212 Cruz LFC, Estévez MJM, Turiño-Luquec JD. Diagnóstico de la astenia tumoral en Atención Primaria. Propuesta de correlación entre dos escalas. Med Paliat. [Internet]. 2012 [Acceso may 2019];19(1):24-30. Disponible en: http://dx.doi.org/10.1016/j.medipa.2010.09.002
http://dx.doi.org/10.1016/j.medipa.2010....
); validation and application of a tool for prognosis(1313 López AR. Validación de un modelo pronóstico de supervivencia basado en parámetros biológicos para pacientes con cáncer terminal atendidos en ámbito domiciliario. Med Paliat. [Internet]. 2013 [Acceso 5 may 2019];20(1):3-9. Disponible en: http://dx.doi.org/10.1016/j.medipa.2012.01.012
http://dx.doi.org/10.1016/j.medipa.2012....
); identification and characterization of patients in PC and services(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
,2222 Paz CRP, Pessalacia JDR, Zoboli ELCP, Souza HL, Granja GF, Schveitzer MC. New demands for primary health care in Brazil: palliative care. Invest Educ Enferm. [Internet]. 2016 [cited May 05, 2019];34(1):46-57. Available from: http://dx.doi.org/10.17533/udea.iee.v34n1a06
http://dx.doi.org/10.17533/udea.iee.v34n...
,2424 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...
,2626 Corrêa SR, Mazuko C, Mitchell G, Pastrana T, Lima L, Murray SA. Identifying patients for palliative care in primary care in Brazil: Project Estar ao Seu Lado’s experience. Rev Bras Med Fam Comunidade. [Internet]. 2017 [cited May 7, 2019];12(39):1-8. Available from: http://dx.doi.org/10.5712/rbmfc12(39)1507
http://dx.doi.org/10.5712/rbmfc12(39)150...
); pain evaluation(1515 Calsina-Berna A, Millán NM, González-Barboteo J, Díaz LS, Sales JP. Prevalencia de dolor como motivo de consulta y su influencia en el sueño: experiencia en un centro de atención primaria. Aten Primaria. [Internet]. 2011 [Acceso 7 may 2019];43(11):568-76. Disponible en: http://dx.doi.org/10.1016/j.aprim.2010.09.006
http://dx.doi.org/10.1016/j.aprim.2010.0...
); assessment of dignity at the end of life(1616 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...
); difficulties in accessing PCs(1717 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....
); the work process in PHC(1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
); perspectives of occupational therapists in PC in PHC(2020 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
); ethical problems(2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
); comfort of caregivers of patients in PC(2323 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...
); relationship between social support, quality of life and depression in PC patients in PHC(2525 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
)(Figure 3).

Figure 3
Synthesis with object and/or question and/or objectives of the studies and main results found in the analyzed articles. Ribeirão Preto, SP, Brazil, 2019

Discussion

The analysis of scientific production has shown that, although there have been advances in recent years, palliative care practices in PHC have still been incipient and, when they occur, present limits, as described in the results in figure 3, as discontinuity of care(1313 López AR. Validación de un modelo pronóstico de supervivencia basado en parámetros biológicos para pacientes con cáncer terminal atendidos en ámbito domiciliario. Med Paliat. [Internet]. 2013 [Acceso 5 may 2019];20(1):3-9. Disponible en: http://dx.doi.org/10.1016/j.medipa.2012.01.012
http://dx.doi.org/10.1016/j.medipa.2012....
,2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
), the complexity and/or difficulties in palliative care at home(1919 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...
-2020 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
,2323 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...
), the peculiarities of palliative care with high cost demands - infrastructure(2020 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
), the insufficient number of visits by health professionals(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
), limited multidisciplinary approaches(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
), insufficient professional training(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
,2020 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
-2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
), the reduced scientific production in the area(2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
), the need to structure PHC for this purpose(2424 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...
),the existence of very general care protocols(1717 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....
) and difficulties in accessing psychological support(1717 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....
).

Such aspects are related to the organization of care networks and primary health care. In Brazil, Family Health teams represented advances in access and health indicators, but face difficulties of various kinds, such as economics, with underfunding of health, training of professionals and improvement of network articulation, among others(2727 Macinko J, Mendonça CS. The Family Health Strategy, a strong model of Primary Health Care that delivers results. Saúde Debate. [Internet]. 2018 [cited Feb 7, 2020];42(Sp. Iss.):18-37. Available from: https://doi.org/10.1590/0103-11042018s102
https://doi.org/10.1590/0103-11042018s10...
).

An analysis of the current panorama of the PC, carried out in 2018, indicated that, although aware that primary care may be the strategy with the lowest cost and greatest impact on the health of a population, the provision of palliative care in the country is centered on hospitals(55 Academia Nacional de Cuidados Paliativos. Panorama dos Cuidados Paliativos no Brasil. [Internet]. 2018 [Acesso 5 mai 2019]. Disponívem em: https://paliativo.org.br/wp-content/uploads/2018/10/Panorama-dos-Cuidados-Paliativos-no-Brasil-2018.pdf
https://paliativo.org.br/wp-content/uplo...
). Perhaps, the incipience of this practice in Brazilian services is demonstrated by the absence of a public health policy that specifically structures or guides the development of these actions(55 Academia Nacional de Cuidados Paliativos. Panorama dos Cuidados Paliativos no Brasil. [Internet]. 2018 [Acesso 5 mai 2019]. Disponívem em: https://paliativo.org.br/wp-content/uploads/2018/10/Panorama-dos-Cuidados-Paliativos-no-Brasil-2018.pdf
https://paliativo.org.br/wp-content/uplo...
).

A study involving Brazil and France addressed the transition of patients between hospital palliative care services and homes and showed that, in both countries, there are difficulties in this transition related, among others, to caregiver fatigue and fear of death. In this study, hospital discharge was also addressed with rationalizing purposes such as the release of beds(2828 Cordeiro FR, Kruse MHL, Carlin N. La sortie d’unités de soins palliatifs au Brésil et en France: expériences de patients atteints d’un cancer avancé et de leurs familles. Médecine Palliative [Internet]. 2018 [Accès 7 Fev 2020];17(3):139-147. Disponible en: https://doi.org/10.1016/j.medpal.2018.03.002
https://doi.org/10.1016/j.medpal.2018.03...
).

The studies(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
,2020 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
-2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
) addressed the insufficient training of professionals for palliative care and this theme was also evidenced in research(77 Saito DYT, Zoboli ELCP. Palliative care and primary health care: scoping review. Rev Bioét. [Internet]. 2015 [cited May 7, 2019];23(3):593-607. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422015000300593
http://www.scielo.br/scielo.php?script=s...
), pointing out that the professionals’ unpreparedness to deal with the demands and needs of chronic health conditions was present in countries that have an aging population longer than Brazil.

Death, understood as a theme that is part of the daily life of health services, integrates the different phases of the human life cycle, but it is still a topic that is treated in a reduced way, both in the training of health professionals and in health services, compromising the principle of integrality.

In the study(1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
) it was shown that the request by family members not to reveal the diagnosis to the patient may coincide with the professional’s option, reinforcing their own difficulties with the subject. An integrative review of PC in PHC highlighted that the monitoring of the process of death and grief and the communication of bad news, among other topics, are rarely addressed in training and health services(77 Saito DYT, Zoboli ELCP. Palliative care and primary health care: scoping review. Rev Bioét. [Internet]. 2015 [cited May 7, 2019];23(3):593-607. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-80422015000300593
http://www.scielo.br/scielo.php?script=s...
).

In some speeches of the professionals and in their actions, the curative model still prevails, focused on the disease and the specificity of care. The training of professionals could favor health education for patients and families, especially in relation to the implementation of PC in PHC(1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
,1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
).

In addition, Permanent Health Education (PHE) is considered learning at work, takes everyday life as an open space and a permanent reviewer of professional practices, as a place of subjectivity and discussions(2929 Ceccim RB. Permanent Education in the Healthcare field: an ambitious and necessary challenge. Interface. [Internet]. 2005 [cited May 5, 2019];9(16):161-77. Available from: http://dx.doi.org/10.1590/S1414-3283200500010001
http://dx.doi.org/10.1590/S1414-32832005...
). Thus, it is believed that institutionalized spaces that can put professional practices in an interdisciplinary way, are essential for the promotion of comprehensive palliative care.

However, it is considered that the provision of palliative care in primary care is related not only to the professionals’ capacity for the development of palliative care, but also with universal health systems that are organized in a network and guided by an expanded conception of the health-disease process, taking into account social determinants and social inequalities. “Poor” teams in poor locations that materialize selective primary care are unable to take on the complexity of primary health care and palliative care.

Teams without adequate working conditions may, for example, make an insufficient number of visits by health professionals to these families(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
).

A study(3030 Giovanella L, Almeida PF. Comprehensive primary care and segmented health systems in South America. Cad Saúde Pública. [Internet]. 2017 [cited Feb 5, 2020];33(Suppl. 2):e00118816. Available from: https://doi.org/10.1590/0102-311x00118816.
https://doi.org/10.1590/0102-311x0011881...
) on Primary Health Care in Latin America addressed 12 countries and discussed the relationship between the implementation of comprehensive primary care and universal social protection. Certainly, this aspect does not match the implementation of neoliberal policies and flexibility of social rights, as has been seen not only in Brazil.

The authors addressed Primary Health Care in full, which considers the family and community focus, the territorial base, the work in multi-professional teams and social participation and the expansion of this aspect in Latin America in left and center-left governments. Concerns were raised about the current political scenario in this region of the world.

It was observed that five(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...
-1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1212 Cruz LFC, Estévez MJM, Turiño-Luquec JD. Diagnóstico de la astenia tumoral en Atención Primaria. Propuesta de correlación entre dos escalas. Med Paliat. [Internet]. 2012 [Acceso may 2019];19(1):24-30. Disponible en: http://dx.doi.org/10.1016/j.medipa.2010.09.002
http://dx.doi.org/10.1016/j.medipa.2010....
-1313 López AR. Validación de un modelo pronóstico de supervivencia basado en parámetros biológicos para pacientes con cáncer terminal atendidos en ámbito domiciliario. Med Paliat. [Internet]. 2013 [Acceso 5 may 2019];20(1):3-9. Disponible en: http://dx.doi.org/10.1016/j.medipa.2012.01.012
http://dx.doi.org/10.1016/j.medipa.2012....
,2323 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...
) articles brought the association of palliative care and cancer. Another five(1616 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...
,2222 Paz CRP, Pessalacia JDR, Zoboli ELCP, Souza HL, Granja GF, Schveitzer MC. New demands for primary health care in Brazil: palliative care. Invest Educ Enferm. [Internet]. 2016 [cited May 05, 2019];34(1):46-57. Available from: http://dx.doi.org/10.17533/udea.iee.v34n1a06
http://dx.doi.org/10.17533/udea.iee.v34n...
,2424 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...

25 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
-2626 Corrêa SR, Mazuko C, Mitchell G, Pastrana T, Lima L, Murray SA. Identifying patients for palliative care in primary care in Brazil: Project Estar ao Seu Lado’s experience. Rev Bras Med Fam Comunidade. [Internet]. 2017 [cited May 7, 2019];12(39):1-8. Available from: http://dx.doi.org/10.5712/rbmfc12(39)1507
http://dx.doi.org/10.5712/rbmfc12(39)150...
) articles mentioned cancer, but not in isolation, they also pointed out other diseases such as diabetes, Alzheimer’s disease, as well as respiratory and cardiovascular diseases. The expansion of PCs to other diseases appeared in a study on human rabies and suggested a review of clinical guidelines, proposing the introduction of PCs for people with rabies in endemic countries(3131 Tarantola A, Crabol Y, Mahendra JB, In S, Barennes H, Bourhy H, et al. Caring for patients with rabies in developing countries - the neglected importance of palliative care. Trop Med Int Health. [Internet]. 2016 [cited May 7, 2019];21(4):564-7. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/tmi.12670
https://onlinelibrary.wiley.com/doi/full...
).

Initially, palliative practice was directed only to cancer patients, but gradually it started to be incorporated by other specialties involved in the care of patients with chronic-degenerative diseases. In its first edition, published in 1995, the “Medical guidelines of the National Palliative Care Organization (NPCO) for determining the prognosis in Selected Non-Cancerous Diseases” determined the prognosis of non-cancer diseases and included them in the palliative care programs. The first non-cancer diseases to be included were: Congestive Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD) and Alzheimer’s disease(3232 Stuart B. The NHO medical guidelines for non-cancer disease and local medical review policy: hospice access for patients with diseases other than cancer. Hosp J. [Internet]. 1999 [cited May 5, 2019];14(3):139-54. Available from: https://paliativossinfronteras.org/wp-content/uploads/THE-NHO-MEDICAL-GUIDELINES-FOR-NON-CANCER-DISEASES_1.pdf
https://paliativossinfronteras.org/wp-co...
).

Subsequently, the second edition, published in 1996, added the following pathologies: Aids (Acquired Immunodeficiency Syndrome); liver and kidney disease; leakage; coma and Amyotrophic Lateral Sclerosis (ALS)(3232 Stuart B. The NHO medical guidelines for non-cancer disease and local medical review policy: hospice access for patients with diseases other than cancer. Hosp J. [Internet]. 1999 [cited May 5, 2019];14(3):139-54. Available from: https://paliativossinfronteras.org/wp-content/uploads/THE-NHO-MEDICAL-GUIDELINES-FOR-NON-CANCER-DISEASES_1.pdf
https://paliativossinfronteras.org/wp-co...
).

If the association of diseases with palliative care can facilitate the specificity of the care to be offered, for Primary Health Care teams, other knowledge needs to be mobilized, such as, for example, the dynamics of family relationships and the production of unique therapeutic projects, as pointed out in a study(1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
).

The use of scales/instruments to define people eligible for palliative care was addressed in six articles, using the Palliative Performance Scale (PPS)(1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
) and the Karnofsky Performance Scale (KPS)(1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
,2222 Paz CRP, Pessalacia JDR, Zoboli ELCP, Souza HL, Granja GF, Schveitzer MC. New demands for primary health care in Brazil: palliative care. Invest Educ Enferm. [Internet]. 2016 [cited May 05, 2019];34(1):46-57. Available from: http://dx.doi.org/10.17533/udea.iee.v34n1a06
http://dx.doi.org/10.17533/udea.iee.v34n...
,2424 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...

25 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
-2626 Corrêa SR, Mazuko C, Mitchell G, Pastrana T, Lima L, Murray SA. Identifying patients for palliative care in primary care in Brazil: Project Estar ao Seu Lado’s experience. Rev Bras Med Fam Comunidade. [Internet]. 2017 [cited May 7, 2019];12(39):1-8. Available from: http://dx.doi.org/10.5712/rbmfc12(39)1507
http://dx.doi.org/10.5712/rbmfc12(39)150...
). Another article proposed the correlation between two scales, the KPS and the ICD-10 classification (ICD-10)(1212 Cruz LFC, Estévez MJM, Turiño-Luquec JD. Diagnóstico de la astenia tumoral en Atención Primaria. Propuesta de correlación entre dos escalas. Med Paliat. [Internet]. 2012 [Acceso may 2019];19(1):24-30. Disponible en: http://dx.doi.org/10.1016/j.medipa.2010.09.002
http://dx.doi.org/10.1016/j.medipa.2010....
).

In addition to the scales to identify people’s eligibility for palliative care, other instruments, such as the Visual Analog Scale (VAS), were used to assess pain intensity(1515 Calsina-Berna A, Millán NM, González-Barboteo J, Díaz LS, Sales JP. Prevalencia de dolor como motivo de consulta y su influencia en el sueño: experiencia en un centro de atención primaria. Aten Primaria. [Internet]. 2011 [Acceso 7 may 2019];43(11):568-76. Disponible en: http://dx.doi.org/10.1016/j.aprim.2010.09.006
http://dx.doi.org/10.1016/j.aprim.2010.0...
), the General Comfort Questionnaire (GCQ), to assess the comfort of formal and informal caregivers(2323 Meneguin S, Ribeiro R, Ferreira MLSM. Conforto de cuidadores formais e informais de pacientes em cuidados paliativos na atenção primária à saúde. Rev Rene. [Internet]. 2016 [Acesso 10 mai 2019];17(6):797-803. Disponível em: http://dx.doi.org/10.15253/2175-6783.2016000600010
http://dx.doi.org/10.15253/2175-6783.201...
), the European Cancer Research and Treatment Organization scale (EORTC QLQ-C15-PAL), to measure patients’ quality of life, the Medical Outcome Study (MOS) scale, for assessing the level of social support, and the Center for Epidemiological Studies - Depression (CES-D) scale for identifying symptoms of depression(2525 Azevedo C, Pessalacia JDR, Mata LRF, Zoboli ELCP, Pereira MG. Interface between social support, quality of life and depression in users eligible for palliative care. Rev Esc Enferm USP. [Internet]. 2017 [cited May 7, 2019];28(51):e03245. Available from: http://dx.doi.org/10.1590/S1980-220X2016038003245
http://dx.doi.org/10.1590/S1980-220X2016...
).

An article that aimed to develop the Dignity Scale for Palliative Patients (PPDS) and used six other scales is highlighted: the Patient Dignity Inventory (PDI), which identifies sources of suffering in patients at the end of life; the Hospital Anxiety and Depression Scale (HADS); the Brief Resilient Coping Scale (BRCS), which measures resilience; the GES Questionnaire, referring to spirituality; the IBPC C-30 Quality of Life scale (EORTC-QLQ-C30) and the Duke-UNC-11 Functional Social Support Questionnaire, which assesses confidential and affective social support(1616 Rudilla D, Oliver A, Galiana L, Barreto P. A new measure of home care patients’ dignity at the end of life: the palliative patients’dignity scale (PPDS). Palliat Support Care. [Internet]. 2016 [cited May 05, 2019];14:99-108. Available from: http://dx.doi.org/10.1017/S1478951515000747
http://dx.doi.org/10.1017/S1478951515000...
).

In addition, it is essential that the primary health care professional knows and knows how to use the main scales used in palliative care, such as the Edmonton Symptom Assessment Scale, the Karnofsky Performance Scale and the Palliative Performance Scale. Thus, professionals can have tools to help guide the specific care plan for palliative care.

Regarding the work process of FHS professionals involved in the care of patients at the end of the process of living, the following ways of caring can be identified: compassion-empathy(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...
-1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
-1919 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...
); respect and willingness to understand the meaning attributed by the patient and their family about death(1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1717 Ruiz-Fernandéz MD, Ortega-Galán AM, Cabrera-Troya J, Ibáñez-Masero O, Carmona-Rega MI, Relinque-Medina F, et al. Personas enfermas al final de la vida: vivencias en la accesibilidad a recursos sociosanitarios. Enfermería Universitaria. [Internet]. 2017 [cited May 07, 2019];14(1):10-8. Available from: http://dx.doi.org/10.1016/j.reu.2016.11.004
http://dx.doi.org/10.1016/j.reu.2016.11....
,2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
); communication used as a strategy to establish a bond(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...
-1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
-1919 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...
,2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
,2424 Azevedo C, Rates CMP, Pessalacia JDR, Mata LRF. Perspectivas para os cuidados paliativos na atenção primária à saúde: estudo descritivo. Online Braz J Nurs. [Internet]. 2016 [Acesso mai 2019];15(4):683-93. Disponível em: http://dx.doi.org/10.17665/1676-4285.20165370
http://dx.doi.org/10.17665/1676-4285.201...
); active and sensitive listening(99 Wakiuchi J, Salimena AMO, Sales CA. Being cared by a family member: the existential feelings of cancer patients. Texto Contexto Enferm. [Internet]. 2015 [cited May 7, 2019];24(2):381-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072015000200381
Available from: http://www.scielo.br/sci...
-1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
,2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
); non-judgment or abandonment of the patient and maintenance of hope(1010 Marchi JA, Paula CC, Girardon-Perlini NMO, Sales CA. The meaning of being a caregiver of a dependent relative suffering from cancer: palliative contributions. Texto Contexto Enferm. [Internet]. 2016 [cited May 5, 2019];25(1):e0760014. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072016000100311&script=sci_abstract&tlng=en
http://www.scielo.br/scielo.php?pid=S010...
,1919 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...
), even about the efficiency of the treatment for symptom relief. This demonstrates that the way of doing, at this moment, emphasizes the ethical and interpersonal dimensions in the professional-patient-family relationship(1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
).

The discussion on bioethics was not a recurring theme in the selected articles and, in only two(1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
,2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
) publications, this subject was addressed. In one of(2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
) them, ethics in palliative care was the central theme, including aspects involving the communication of bad news, such as lack of sincerity and hiding the truth. Another article(1818 Combinato DS, Martins STF. (Pleading for) palliative care in primary health care. Mundo Saúde. [Internet]. 2018 [cited May 05, 2019];36(3):433-44. Available from: http://bvsms.saude.gov.br/bvs/artigos/mundo_saude/defesa_cuidados_paliativos_atencao_primaria.pdf
http://bvsms.saude.gov.br/bvs/artigos/mu...
) approached the subject, presenting a brief discussion about otherness, considered one of the references of bioethics.

It should be added that, for the effectiveness and guarantee of palliative care in primary care, it is assumed that there is articulation between the various health services and several other sectors - consequently, other professional categories - such as: transport, to ensure accessibility; social security, guaranteeing social rights; and justice, to ensure access and equity.

In addition, in the intra-sectoral prism of the health system, relations with the various medical specialties (Geriatrics, Neurology, Psychiatry, Cardiology) must be signed and perpetuated, in addition to different multi-professional categories, areas of epidemiological information and management, among others(3333 Mendes EC, Vasconcellos LCF. Palliative cares on cancer and the doctrinal principles of SUS. Saúde Debate. [Internet]. 2015 [cited May 7, 2019];39(106):881-92. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0103-11042015000300881
http://www.scielo.br/scielo.php?script=s...
).

The importance of the multi-professional team was mentioned as fundamental in five(1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
,1414 Marcucci FCI. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. [Internet]. 2016 [cited May 10, 2019];15(51):1-10. Available from: http://dx.doi.org/10.1186/s12904-016-0125-4
http://dx.doi.org/10.1186/s12904-016-012...
,1919 Queiroz AHAB, Pontes RJS, Souza AMA, Rodrigues TB. Perception of family members and health professionals on end of life care within the scope of primary health care. Ciênc Saúde Coletiva. [Internet]. 2013 [cited May 07, 2019];18(9):2615-23. Available from: http://dx.doi.org/10.1590/S1413-81232013000900016
http://dx.doi.org/10.1590/S1413-81232013...

20 Portela SG, Galheigo SM. Palliative care in home care: perceptions of ocupational therapists. Cad Ter Ocup. [Internet]. 2015 [cited May 07, 2019];23(1):15-29. Available from: https://www.researchgate.net/publication/307842167_Palliative_care_in_home_care_perceptions_of_occupational_therapists
https://www.researchgate.net/publication...
-2121 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Palliative care in primary health care: ethical considerations. Rev Bioét. [Internet]. 2015 [cited May 07, 2019];23(2):349-59. Available from: http://dx.doi.org/10.1590/1983-80422015232074
http://dx.doi.org/10.1590/1983-804220152...
) articles, with an emphasis on the need for theoretical, scientific knowledge and specific clinical skills in the domain of different professions so that the integrality of actions in the process of offering palliative care takes place, thus contemplating the physical, psychosocial and spiritual dimensions of the patient and their family.

In addition, within its scope, PHC has the potential to develop a set of interventions that favor the quality of life and continuity of palliative care, inside and outside the home, and can potentially favor and provide the patient with care close to the patient family and friends, in addition to reducing the risk of infections and suffering from unnecessary hospitalizations(1111 Carvalho GAL, Menezes RMP, Enders BC, Teixeira GA, Dantas DNA, Oliveira DRC. Meanings attributed to palliative care by health professional in the primary care context. Texto Contexto Enferm. [Internet]. 2018 [cited May 7, 2019];27(2):e5740016. Available from: http://www.scielo.br/scielo.php?pid=S0104-07072018000200320&script=sci_arttext
http://www.scielo.br/scielo.php?pid=S010...
,3434 Ministério da Saúde (BR). Resolução n. 41/GM/CIT de 31 de outubro de 2018 (BR). Dispõe sobre as diretrizes para a organização dos cuidados paliativos, à luz dos cuidados continuados integrados, no âmbito Sistema Único de Saúde (SUS). [Internet]. Diário Oficial da União 23 nov 2018. [Acesso 5 mai 2019]. Disponível em: http://www.in.gov.br/web/guest/materia/-/asset_publisher/Kujrw0TZC2Mb/content/id/51520746/do1-2018-11-23-resolucao-n-41-de-31-de-outubro-de-2018-51520710
http://www.in.gov.br/web/guest/materia/-...
).

In addition, for the PC to evolve in PHC, it is necessary to plan the offer, identify and meet the needs, the available resources, practice the sharing of information through appropriate communication and define the commitments of the parties involved. This is done in collaborative relationships and practices between different professionals, families and managers.

In line with Resolution No. 41, of October 31, 2018, which provides for guidelines for the organization of palliative care, in the light of integrated continuous care, within the scope of the Unified Health System (UHS), it is advised that “the palliative care should be part of the integrated continuous care offered within the scope of the Health Care Network (HCN)”, with PHC being considered the originator of care and territorial action(3333 Mendes EC, Vasconcellos LCF. Palliative cares on cancer and the doctrinal principles of SUS. Saúde Debate. [Internet]. 2015 [cited May 7, 2019];39(106):881-92. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0103-11042015000300881
http://www.scielo.br/scielo.php?script=s...
).

In order for changes to occur in the scope of management and care, the ability to dialogue and problematize the current concepts within each health team is essential. The construction of new pacts, with the approximation of concepts about comprehensive, humanized and quality care, in addition to equity and milestones that occurred strongly in the process of reforming the Brazilian health system, are essential for such changes to occur(2929 Ceccim RB. Permanent Education in the Healthcare field: an ambitious and necessary challenge. Interface. [Internet]. 2005 [cited May 5, 2019];9(16):161-77. Available from: http://dx.doi.org/10.1590/S1414-3283200500010001
http://dx.doi.org/10.1590/S1414-32832005...
).

This study has as its limit the non-problematization of the different health systems where the studies were produced, and primary health care is not always developed in its integral aspect, and there is still a strong orientation of health services according to the hospital logic. In addition, another limitation is the inclusion of articles in only four languages (Portuguese, French, Spanish and English), which may have limited access to other publications on the topic.

It is hoped that the compilation of the findings presented in this review may give rise to new lines of research and encourage other publications, contributing to the scientific advancement of the theme and performing the function of aid and support for the restructuring of practices and policies related to palliative care in primary health care.

Conclusion

The evidence and themes investigated relating palliative care in primary health care point to the possibility of this care, since these teams work closely with families and the territories where they live. Such a process could occur in health systems that implement primary care articulated with social policies, which ensure health as a human right, being difficult to implement in non-universal systems and with primary care teams with few resources and poor articulation in a service network.

The studies point out possibilities of using scales that can assist in the identification and follow-up of people in palliative care, such as the Edmonton Symptom Assessment Scale, the Karnofsky Performance Scale and the Palliative Performance Scale. There are also productions that point out aspects of subjectivity as important, highlighting empathy, listening and valuing cultural aspects.

There are articles that deal with specific pathologies, with emphasis on cancer, diabetes and several pathologies that participate in the epidemiological and demographic transition. It is emphasized that specific care needs to be recognized at the same time that, in primary health care, other knowledge needs to be mobilized to consider family and social dynamics and thus build unique therapeutic projects.

It was possible to identify, in this review, that there is a concern with the initial training of health professionals and on-the-job training, as this is still incipient. To improve this situation, the insertion of the PC discipline in health courses is recommended and the implementation of permanent education and health education actions to bring family members and professionals closer together, taking into account cultural and social aspects of each family and team.

However, it is reaffirmed that the provision of palliative care in primary care is a complex challenge that goes beyond the preparation of professionals and family members, involves changing the logic and the care model that is still centered on diseases, economic logic and professional practices that compete with each other in a corporate way. This process is also related to social policies that conflict with the implementation of neoliberal policies and the flexibilization of social rights.

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Edited by

Asociate Editor: Maria Lúcia Zanetti

Publication Dates

  • Publication in this collection
    01 July 2020
  • Date of issue
    2020

History

  • Received
    18 Aug 2019
  • Accepted
    07 Apr 2020
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