Identification of people for palliative care in primary health care: integrative review

Camila Maria Silva Paraizo-Horvath Daiane de Souza Fernandes Tatiana Mara da Silva Russo Ana Carolina de Souza Renata Cristina de Campos Pereira Silveira Cristina Maria Galvão Karina Dal Sasso Mendes About the authors

Abstract

This article aims to analyze the evidence available in the literature on the process of identifying adults and elderly people who can benefit from palliative care (PC) in primary health care (PHC). This is an integrative literature review carried out in PubMed, CINAHL, LILACS, Web of Science, and Embase. Eight studies were selected, in which different instruments and methods were distinguished with the purpose of identifying people who can benefit from PC in the context of PHC. The incorporation of these instruments into clinical practice is urgent in order to increase the reach and effectiveness of the services offered by health professionals, considering the current demographic and epidemiological profile that points to the increase of people with a potential need for PC. Different instruments have been successfully used to identify PC in the context of PHC. However, some have weaknesses, such as the fact that they only allow the identification of people with oncological diseases, leaving out other health conditions, which reinforces the need for further studies on this topic.

Key words:
Palliative care; Primary health care; Comprehensive health care; Health policy; Review

Introduction

In Brazil, the palliative care movement has been growing and gaining notoriety due to the demographic and epidemiological transition, characterized by the increase in the adult and elderly population and, consequently, change in clinical processes, leading to a gradual increase in chronic and complex diseases that affect multiple organs, which often threaten the continuity of life11 Gomes ALZ, Othero MB. Cuidados Paliativos. Estud Av 2016; 30(88):155-166..

Palliative care (PC) is defined as active holistic care provided to people who are confronting intense suffering related to health, resulting from severe diseases, especially for individuals in the final stages of life. This type of care seeks to improve the quality of life of the patients, family, and caretakers22 International Association for Hospice and Palliative Care (IAHPC). Definição de cuidados paliativos [Internet]. 2018. [citado 2021 out 15]. Disponível em: https://hospicecare.com/uploads/2019/2/Palliative%20care%20definition%20-%20Portuguese%20(Brazilian).pdf
https://hospicecare.com/uploads/2019/2/P...
. What is recommended is the adoption of the aforementioned definition and its use as a model in the construction of health policies and educational initiatives33 Santos FR, Santos Junior AGS, Pessalacia JDR. Desafios para os cuidados paliativos na atenção primária à saúde: revisão integrativa de literatura. Rev Enferm UFPE 2016; 10(7):2708-2719..

Considering the intense demographic and epidemiological transition occurring in Brazil, one can observe a gradual increase in users of the Brazilian Unified Health System (SUS) in the sense of PC, highlighting the inherent need for the reorganization of health services to attend to this demand44 Souza HL, Zoboli ELCP, Paz CRP, Schveitzer MC, Hohl KG, Pessalacia JDR. Cuidados paliativos na atenção primária à saúde: considerações éticas. Rev Bioet 2015; 23(2):349-359..

Primary health care (PHC) has been considered the highest level of health care to provide and coordinate PC due to the geographic and cultural proximity and to the connection of health professionals who work in these units with the population that may eventually contribute to a more humanized form of health care55 Silva RS. Enfermagem em cuidados paliativos para uma morte com dignidade: subconjunto terminológico CIPE(r) [tese]. Salvador: Universidade Federal da Bahia; 2014..

It can be said that both PC and the PHC are focused on providing complete health care to people and expand this care to the personal and family contexts in an attempt to positively influence patients’ health conditions and quality of life, developing education, treatment, and complete care actions, even in the cases in which there is no possible cure. This study also observed the fact that people with PC needs are present in the PHC context; however, the identification of these people is a challenge for health care66 Marcucci FCI, Perilla AB, Brun MM, Cabrera MAS. Identificação de pacientes com indicação de cuidados paliativos na Estratégia Saúde da Família: estudo exploratório. Cad Saude Colet 2016; 24(2):145-152..

As it involves clinical conditions and different social contexts that directly affect one’s quality of life, the definition of patients undergoing PC is not well defined. In this light, a systematic review, which sought to propose minimal characteristics that define a patient in PC, identified a variety of definitions for this population in studies on PC. Faced with this scenario, the authors recommended the following criteria: i) the identification of health conditions that threaten life, such as progressive diseases or conditions with no possibility of remission; ii) the inclusion cannot be limited to only one type of disease; and iii) the identification of conditions with the need for different types of care due to the presence of multiple symptoms77 Van Mechelen W, Aertgeerts B, De Ceulaer K, Thoonsen B, Vermandere M, Warmenhoven F, Van Rijswijk E, De Lepeleire J. Defining the palliative care patient: a systematic review. Palliative Med 2012; 27(2):197-208..

In the literature, evidence can be found indicating that most health professionals tend to associate this type of care to the final moments of life and imminent death88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369., contributing, in many cases, to a scenario in which the health professionals find it difficult to provide an early identification of people with a potential need for PC and who do not fit into this terminal stage of life88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369.

9 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359.
-1010 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02..

It is also important to highlight the significance of resorting to a systematized manner in which to help health professionals to provide an early identification of the people who need follow-up under the philosophy of PC. The studies on these forms are rare, in both the national and international scenarios1111 Marques R S, Cordeiro FR. Instrumentos para identificação da necessidade de cuidados paliativos: revisão integrativa. REAS 2021; 13(4):e7051..

Considering that presented above, studies geared toward the debate surrounding PC in PHC are warranted in order to cooperate in the planning and formulation of actions that contribute to overcoming these challenges. In this light, the following question arose: How have PHC professionals identified adult and elderly people with a potential need for PC actions? It is important to note that investigating the manner in which the identification has been conducted by the PHC is of utmost importance for the incorporation of methods and tools that have been proven effective, especially in health services that still do not use them, as well as the recognition of barriers that should be overcome so that the identification of these people can occur in such a way as to guarantee complete and high-quality health care. Therefore, the present study aimed to analyze the evidence available in the literature regarding the identification of adult and elderly individuals who can benefit from PC in PHC.

Method

This study is an integrative review and was conducted according to the following stages: drafting of the research question, search in the literature, categorization of the studies, critical evaluation, interpretation of results, and presentation of integrative review1212 Mendes KDS, Silveira RCCP, Galvão CM. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto Enferm 2008; 17(4):758-764.. Part of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses was used to develop the review1313 Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, Shamseer L, Tetzlaff JM, Akl EA, Brennan SE, Chou R, Glanville J, Grimshaw JM, Hróbjartsson A, Lalu MM, Li T, Loder EW, Mayo-Wilson E, McDonald S, McGuinness LA, Stewart LA, Thomas J, Tricco AC, Welch VA, Whiting P, Moher D. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021; 372:n71.. This review’s protocol was registered on the Open Science Framework, available at https://doi.org/10.17605/OSF.IO/TBC79.

The PICo strategy1414 Munn Z, Stern C, Aromataris E, Lockwood C, Jordan Z. What kind of systematic review should I conduct? A proposed typology and guidance for systematic reviewers in the medical and health sciences. BMC Med Res Methodol 2018; 18(1):5. was used to construct the question and to search for primary studies, in which P = patient, I = intervention, and Co = context. Thus, the defined question was: what evidence is available in the literature about the process of identification of adult and elderly people in PC in PHC? For the element “P”, “adult and elderly people” were considered; for “I”, the identification of people who can benefit from PC”, and “C”, “PHC”.

The following inclusion criteria were applied to select the studies: primary studies that treated the identification of adult and elderly people in PC in the realm of PHC, in English, Spanish, and Portuguese, published in the past four years. The definition of the time period is justified by the publication of the National Primary Care Policy (PNAB, in Portuguese), which, in its main document, presents this care as part of the services to be offered in PHC in Brazil, aiming to guarantee access to the entire Brazilian population, by means of Decree 2436, of September 21, 20171515 Brasil. Ministério da Saúde (MS). Política Nacional de Atenção Básica, Portaria nº 2.436, de 21 de Setembro de 2017. [citado 2021 out 22]. Disponível em: https://bvsms.saude.gov.br/bvs/saudelegis/gm/2017/prt2436_22_09_2017.html
https://bvsms.saude.gov.br/bvs/saudelegi...
. Publications in the form of editorials, letters to the editor, theses, dissertations, experience reports, and case studies, as well as studies with pediatric patients, were excluded.

The search for primary studies was conducted in the following databases: PubMed, Cumulative Index to Nursing, and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), Embase, and Web of Science. For this, the following controlled descriptors (vocabulary from the database itself) were selected: Medical Subject Heading (MeSH), CINAHL headings, Health Sciences Descriptors (DeCS), and Emtree, respectively. Please note that the Web of Science database does not have its own vocabulary. In addition to the controlled descriptors, alternative terms indicated by the databases were also adopted to formulate the search strategy, which was unique and adapted for each selected database. The Boolean operators AND and OR, as well as the truncation resource, were used. The search strategy proposed in this study was conducted on January 26, 2021, and exemplified by its use in the search for publications in PubMed, according to the following descriptions: (“Adult”[Mesh] OR “Adult$” OR “Aged”[Mesh] OR “Aged” OR “Elderly” OR “Middle Aged”[Mesh] OR “Middle Aged” OR “Middle Age” OR “Young Adult”[Mesh] OR “Young Adult” OR “Young Adults” OR “Oldest Old” OR “Nonagenarian$” OR “Octogenarian$” OR “Centenarian$”) AND (“Palliative Care”[Mesh] OR “Palliative Care” OR “Palliative Treatment” OR “Palliative Treatments” OR “Palliative Therapy” OR “Palliative Supportive Care” OR “Palliative Surgery” OR “Palliative Care” OR “end-of-life” OR “end of life” OR “palliative patients” OR “Terminal Care”[Mesh: NoExp] OR “Terminal Care” OR “End of Life Care” OR “End-Of-Life Care” OR “End-Of-Life Cares”) AND (“Primary Health Care”[Mesh: NoExp] OR “Primary Health Care” OR “Primary Healthcare” OR “Primary Care” OR “primary care medicine”).

After the implementation of the search for primary studies in the selected databases, the identified registers were exported to the EndNote (version X7) references manager, where they were organized and duplicates were removed1616 Mendes KDS, Silveira RCCP, Galvão CM. Use of the bibliographic reference manager in the selection of primary studies in integrative reviews. Texto Contexto Enferm 2019; 28:e20170204.. Later, the registers were exported to the Rayyan web application1717 Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan - a web and mobile app for systematic reviews. BMC 2016; 5:210, in which new identified duplicates were removed and two reviewers were included to select the studies by doing a blind reading of the title and abstracts. The divergences between the reviewers were resolved through a consensus meeting, together with a third reviewer. Next, the selected studies were read in full, following the same thoroughness of the previous stage, resulting in a final study selection stage which constructed the review sample. The references of the included studies were traced, resulting in the inclusion of one additional study.

After having selected the studies, the extraction of the main information, following the script, was carried out. The following information was recorded: title, author, year, aim, methodological design, results, and conclusions. This step was conducted by a reviewer and then revised by a second reviewer.

The Guideline Critical Review Form for Quantitative Studies, developed by McMaster University Occupational Therapy Evidence-Based Practice Research Group, was used to evaluate the methodological quality of the primary studies included in this review. The form was drafted to evaluate studies developed using the quantitative approach, with nine questions, and for studies conducted using the qualitative approach, with 12 questions. Each topic with a yes answer corresponds to the increase in the quality and methodological thoroughness of the study1818 Law M, Stewart D, Pollock N, Lets L, Bosch J, Westmorland M. Guidelines for critical review form - Quantitative Studies. Adapted Word Version - Hamilton, Ontario: McMaster University Occupational Evidence-based Practice Research Group. 1998. [cited 2021 out 22]. Available from: https://canchild.ca/system/tenon/assets/attachments/000/000/366/original/quantguide.pdf
https://canchild.ca/system/tenon/assets/...
,1919 Letts L, Wilkins S, Law M, Stewart D, Bosch J, Westmorland, M. Guidelines for critical review form: qualitative studies (version 2.0). 2007. [cited 2021 out 22]. Available from: https://www.canchild.ca/system/tenon/assets/attachments/000/000/360/original/qualguide.pdf
https://www.canchild.ca/system/tenon/ass...
. The Mixed Methods Appraisal Tool (MMTA) tool was used to evaluate the methodological quality of the mixed studies, which contains five questions to evaluate the method, considering that with each positive answer, the quality of the method increases2020 Hong QN, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, Gagnon M-P, Griffiths F, Nicolau B, O'Cathain A, Rousseau M-C, Vedel I. Mixed Methods Appraisal Tool (MMAT), version 2018. Registration of Copyright (#1148552), Canadian Intellectual Property Office, Industry Canada. [cited 2021 out 22]. Available from: http://mixedmethodsappraisaltoolpublic.pbworks.com/w/file/fetch/127916259/MMAT_2018_criteria-manual_2018-08-01_ENG.pdf
http://mixedmethodsappraisaltoolpublic.p...
.

Finally, the level of evidence of each study was classified based on the ranking of evidence proposed by researchers2121 Fineout-Overholt E, Stillwell SB. Asking compelling, clinical questions. In: Melnyk B M, Fineout-Overholt E. Evidence-based practice in nursing and healthcare: a guide to best practice. Philadelphia: Wolters Kluwer; 2019. p. 33-54.. The evidence rankings were drafted according to the type of clinical question of the analyzed study, as follows: (1) clinical questions of intervention/treatment or diagnosis/diagnostic test, (2) clinical questions of prognosis/prediction or etiology, and (3) clinical question of meaning.

Results

Figure 1 presents the flow chart about the path taken during the primary study selection process, with a review sample comprised of eight questions.

Figure 1
Flow chart of the selection process for primary studies included in the integrative review, adapted from Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA). Ribeirão Preto, SP, Brazil, 2021.

As regards the year of publication, the number of studies in 2018 was (n = 4; 50%), and regarding the language, most of the studies were published in English (n = 6; 75%). The other studies were published in Spanish. As regards the country that developed the studies, an absence of Brazilian studies was observed, indicating a gap in the literature, especially when considering the new PNAB, which also clearly showed the responsibility of PHC upon people who need PC.

Chart 1 shows the main information of the studies included in the review, together with the level of classified evidence.

Chart 1
Synthesis of studies included in the integrative review (n = 8). Ribeirão Preto, SP, Brazil, 2021.

In the analysis of the methodological quality of the studies, in the only mixed study included in this review, weaknesses were found in two questions evaluated in the form, one referent to the integration of the qualitative and quantitative results, and the other about following all the quality criteria for the methods used in the review88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369..

For the only qualitative study included herein, of the 21 topics treated in the evaluation of methodological quality, only five were marked as “Not informed” and referred to the aspects related to the information about the saturation of the data; the description of the data collection was also not informed. Weaknesses were also observed where five topics were marked as “Not” and referred to the data analysis, as well as the absence of evidence about the reliability components (credibility/transferability/reliability/affirmability) and the conclusion, considered inadequate when considering the findings from the study2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

Chart 2 presents the methodological quality analysis of the quantitative studies included in the review.

Chart 2
Evaluation of the methodological quality of the quantitative studies. Ribeirão Preto, SP, Brazil, 2021.

In two primary studies included in the review, the authors used their respective country’s validated version of the Supportive and Palliative Care Indicators Tool (SPICT). This is a tool structured in three dimensions, as follows: overall clinical indicators; specific clinical indicators of the condition; and recommendations for PC actions (for example, the review of prescribed medications, conversation about the deterioration of health and death with the patients and the parents, the planning of early care or the referral to a PC specialist)1010 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02.,2626 Hamano J, Oishi A, Kizawa Y. Identified Palliative Care Approach Needs with SPICT in Family Practice: A Preliminary Observational Study. J Palliat Med 2018; 21(7):992-998..

In a study carried out at the Segóvia PHC, the authors used the Identificación y Atención Integral-Integrada de Personas com Enfermedades Crónicas Avanzadas em Servicios de Salud y Sociales (NECPAL CCOMS-ICO© 1.09) PC identification tool, which is divided into “question 1” (surprise question); “question 2” (choice/demand or need); and “question 3” (overall clinical indicators of severity and progression). This last question refers to the following indicators: nutritional decline, functional decline (Karnofsky or Barthel test), cognitive decline (Minimental/ Pfeiffer), geriatric syndromes (falls, dysphagia, recurrent infections, pressure lesions, delirium), persistent symptoms (Edmonton Symptom Assessment System - ESAS), psychosocial aspects (suffering and/or severe adjustment disorder, severe social violation), multimorbidity (Charlson test), and the use of resources (evaluation of the demand or intensity of interventions)2222 Trapero CS, Antón EA, Gómez LM. Formación y aplicación del instrumento NECPAL en el ámbito de la Atención Primaria. Med Paliat 2019; 26(4):300-308..

The aim of another study included in this review was to evaluate, in terms of the improvement of processes and economic impact, the implementation of a PC integrated program, focused on identifying the patient. The implementation of the integrated intervention began in 2013 and was based on the identification of patients, using code 9 of the International Classification of Diseases (ICD-9), referent to PC patients. McNamara’s minimum estimate was used as an identification criterion, which refers to an approach that seeks to provide minimum, average, and maximum estimates of a population in relation to the need for PC2323 Larrañaga I, Millas J, Soto-Gordoa M, Arrospide A, San Vicente R, Irizar M, Lanzeta I, Mar J. Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco. Aten Primaria 2019; 51(2):80-90..

Another form used to identify people who could benefit from PC in the context of PHC was called the ARIANNA project. This project is an organizational model where basic care and PC are integrated, following up on patients throughout the entire care process, from the early identification to future death, registering the trajectory and clinical conditions throughout the study, using tools shared by different environments. To enroll the patients in this study, the doctors used the version of the Standard Framework (GSF) called the Prognostic Indicator Guidance, adapted to the Italian context, which uses a guide for the professionals to identify the people who appear to be in the final stages of life. In addition, it has the purpose of anticipating the needs of the patients in order to guarantee the proper PC planning. The criteria to include the GSF are based on the negative answer to the “surprise question” (“Would you be surprised if a patient died in the next 12 months?”). The overall criteria included factors related to psychophysical decline and growing needs, such as dependence in most daily routine activities, the presence of comorbidities, the reduced response to treatment, the progressive loss of weight (> 10%) during the prior six months, and non-planned and repeated hospital admissions in moments of crisis. Specific clinical indicators represented specific subcriteria in this study2424 Scaccabarozzi G, Amodio E, Pellegrini G, Limonta F, Lora Aprile P, Lovaglio PG, Peruselli C, Crippa M.The "Arianna" project: an observational study on a model of early identification of patients with palliative care needs through the integration between primary care and Italian home palliative care units. J Palliat Med 2018; 21(5):631-637..

To evaluate the state of the patient, both at the moment of identification, as well as in the subsequent evaluations, the authors used specific internationally validated scales, in addition to information logged in the electronic medical records. Among these, the Karnofsky Performance Status (KPS) was applied to evaluate the physical function of the patient. This index is comprised of 11 categories, ranging from 100 (patient without signs or symptoms of disease) to 0 (death) points. To evaluate the pain, the Numeric Pain Rating Score was used, with values ranging from 0 (no pain) to 10 (maximum level of pain) points. The performance of patients in their daily routines was evaluated by means of the activities of daily living (ADL)2424 Scaccabarozzi G, Amodio E, Pellegrini G, Limonta F, Lora Aprile P, Lovaglio PG, Peruselli C, Crippa M.The "Arianna" project: an observational study on a model of early identification of patients with palliative care needs through the integration between primary care and Italian home palliative care units. J Palliat Med 2018; 21(5):631-637..

The adaptation of the GSF scale was also used in another study that applied the method for identification, called the Palliatieve Thuiszorg (PaTz) group, which means home care. In this casuistry, interpersonal meetings were conducted, generally six times per year, between general practitioners and community nurses who worked in the same area, with the support of PC consultants (doctor or nurse with a formal education and experience in PC). Using the surprise question, it was defined if the patient should be included in the PaTz palliative care records. In addition to the identification of people who can benefit from PC, this group also discussed the actions that can be developed for each identified patient99 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359..

In another study, the authors investigated the acceptability and the implications of using the electronic system based on PHC to identify people who run the risk of dying within the period of 12 months. This algorithm can be incorporated in the electronic medical records to generate, systematically and routinely, lists based on patient practices that benefited from the PC approach and conversations about the end of life, such as early planning for PC and discussion about the goals of PC to be achieved2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

Similar to the previous study, some researchers also used a barcode to help them identify patients for the PC approach. Called the AnticiPal, this method uses a list of barcodes that, individually or in combination, can indicate people with health needs that are ever-increasingly worse and require PC88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369..

Discussion

In most of the studies, the identification of the target population increased significantly with the implementation of the methods or instruments explained above. Only the use of the PaTz method indicated a certain weakness concerning the identification of non-oncological patients99 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359..

PC is fitting for people in conditions that can limit one’s life and should be made available as early as possible, shortly after the diagnosis, and incorporated into the disease modifying treatments88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369.,2323 Larrañaga I, Millas J, Soto-Gordoa M, Arrospide A, San Vicente R, Irizar M, Lanzeta I, Mar J. Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco. Aten Primaria 2019; 51(2):80-90.. Most people’s needs at the end of life can be remedied by offering this type of early care in PHC1010 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02..

The attribution of PC, in an interpersonal manner, opens the door to a broader view in order to provide complete care in the final stages of life, thereby improving the quality of life of the patient and the family99 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359.. Conversation about the finiteness of life should not be limited to only one professional or to a specific environment, as it demands an approach on the part of the team, both inside and outside of PHC, in an attempt to mitigate problems and benefit from the set of skills and knowledge of each component of the team2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

It is also important to note that conversations about the end of life with the identified patient require a sensitive and ethical approach, which is not an easy task for the health professionals involved in this process. Special skills, such as communication, empathy, and professional experience, are essential for the success of the approach taken by these health providers1010 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02..

Individuals who present multimorbidities, weaknesses, or organ failure are still at a disadvantage in the offer of PC88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369.,2222 Trapero CS, Antón EA, Gómez LM. Formación y aplicación del instrumento NECPAL en el ámbito de la Atención Primaria. Med Paliat 2019; 26(4):300-308.,2323 Larrañaga I, Millas J, Soto-Gordoa M, Arrospide A, San Vicente R, Irizar M, Lanzeta I, Mar J. Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco. Aten Primaria 2019; 51(2):80-90.. In general, the recognition of people who are approaching the end of life is morose, making it difficult for care planning to be put into practice2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620.. The early identification of this patient profile can expedite their referral to other care levels, when necessary2727 Downar J, Goldman R, Pinto R, Englesakis M, Adhikari NKJ. The "surprise question" for predicting death in seriously ill patients: a systematic review and meta-analysis. CMAJ 2017; 189(13):e484-e493..

Therefore, it is of utmost importance that PHC teams adopt this care approach, fostering a broad comprehension, in addition to the formulation of therapeutic plans that can enable the optimization of the quality of life. In addition, these actions can enable better results in the establishment of targets, the coordination of care, and access to services, leading to a reduction in hospitalizations and a diminishing of unfavorable conducts during treatment, in addition to allowing more people to choose the location of their dying days and providing a greater support for the mourning of the family99 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359.,1010 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02.,2323 Larrañaga I, Millas J, Soto-Gordoa M, Arrospide A, San Vicente R, Irizar M, Lanzeta I, Mar J. Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco. Aten Primaria 2019; 51(2):80-90.,2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

Among the barriers to the offering of PC in PHC, what stands out is the difficulty in the systematic identification of the people who are in need of this type of care88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369.

9 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359.
-1010 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02.. Another difficulty is the limited understanding of the people who have advanced and progressive diseases, as well as of the caretakers, about the concept and benefits of PC, associating this treatment with death, without seeing the possibility of the contribution of this care in their daily routines88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369.,2323 Larrañaga I, Millas J, Soto-Gordoa M, Arrospide A, San Vicente R, Irizar M, Lanzeta I, Mar J. Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco. Aten Primaria 2019; 51(2):80-90..

The early introduction of the PC approach in PHC is a challenge in a population with diverse advanced conditions involved in the health-disease process88 Mason B, Boyd K, Steyn J, Kendall M, Macpherson S, Murray SA. Computer screening for palliative care needs in primary care: a mixed-methods study. Br J Gen Pract 2018; 68(670):e360-e369.

9 Van der Plas AG, Pasman HRW, Schweitzer B, Onwuteaka-Philipsen BD. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. Br J Gen Pract 2018; 68(670):e351-e359.

10 Afshar K, Wiese B, Schneider N, Müller-Mundt G. Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). Ger Med Sci 2020;18:Doc02.

11 Marques R S, Cordeiro FR. Instrumentos para identificação da necessidade de cuidados paliativos: revisão integrativa. REAS 2021; 13(4):e7051.

12 Mendes KDS, Silveira RCCP, Galvão CM. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto Enferm 2008; 17(4):758-764.

13 Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, Shamseer L, Tetzlaff JM, Akl EA, Brennan SE, Chou R, Glanville J, Grimshaw JM, Hróbjartsson A, Lalu MM, Li T, Loder EW, Mayo-Wilson E, McDonald S, McGuinness LA, Stewart LA, Thomas J, Tricco AC, Welch VA, Whiting P, Moher D. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021; 372:n71.

14 Munn Z, Stern C, Aromataris E, Lockwood C, Jordan Z. What kind of systematic review should I conduct? A proposed typology and guidance for systematic reviewers in the medical and health sciences. BMC Med Res Methodol 2018; 18(1):5.

15 Brasil. Ministério da Saúde (MS). Política Nacional de Atenção Básica, Portaria nº 2.436, de 21 de Setembro de 2017. [citado 2021 out 22]. Disponível em: https://bvsms.saude.gov.br/bvs/saudelegis/gm/2017/prt2436_22_09_2017.html
https://bvsms.saude.gov.br/bvs/saudelegi...

16 Mendes KDS, Silveira RCCP, Galvão CM. Use of the bibliographic reference manager in the selection of primary studies in integrative reviews. Texto Contexto Enferm 2019; 28:e20170204.

17 Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan - a web and mobile app for systematic reviews. BMC 2016; 5:210

18 Law M, Stewart D, Pollock N, Lets L, Bosch J, Westmorland M. Guidelines for critical review form - Quantitative Studies. Adapted Word Version - Hamilton, Ontario: McMaster University Occupational Evidence-based Practice Research Group. 1998. [cited 2021 out 22]. Available from: https://canchild.ca/system/tenon/assets/attachments/000/000/366/original/quantguide.pdf
https://canchild.ca/system/tenon/assets/...

19 Letts L, Wilkins S, Law M, Stewart D, Bosch J, Westmorland, M. Guidelines for critical review form: qualitative studies (version 2.0). 2007. [cited 2021 out 22]. Available from: https://www.canchild.ca/system/tenon/assets/attachments/000/000/360/original/qualguide.pdf
https://www.canchild.ca/system/tenon/ass...

20 Hong QN, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, Gagnon M-P, Griffiths F, Nicolau B, O'Cathain A, Rousseau M-C, Vedel I. Mixed Methods Appraisal Tool (MMAT), version 2018. Registration of Copyright (#1148552), Canadian Intellectual Property Office, Industry Canada. [cited 2021 out 22]. Available from: http://mixedmethodsappraisaltoolpublic.pbworks.com/w/file/fetch/127916259/MMAT_2018_criteria-manual_2018-08-01_ENG.pdf
http://mixedmethodsappraisaltoolpublic.p...

21 Fineout-Overholt E, Stillwell SB. Asking compelling, clinical questions. In: Melnyk B M, Fineout-Overholt E. Evidence-based practice in nursing and healthcare: a guide to best practice. Philadelphia: Wolters Kluwer; 2019. p. 33-54.

22 Trapero CS, Antón EA, Gómez LM. Formación y aplicación del instrumento NECPAL en el ámbito de la Atención Primaria. Med Paliat 2019; 26(4):300-308.
-2323 Larrañaga I, Millas J, Soto-Gordoa M, Arrospide A, San Vicente R, Irizar M, Lanzeta I, Mar J. Impacto de la identificación de pacientes en un programa de cuidados paliativos del País Vasco. Aten Primaria 2019; 51(2):80-90..

Early identification can have a positive impact upon the health system, considering that it has the potential to reduce the work load and stress levels of the health professionals involved, since with prior care planning provided to the patient who is in the final stages of life, the access to services and available aid tends to be more dynamic2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

The provision of the PC approach in PHC is urgent in many health systems, since in many situations the patients are identified late in the trajectory of the disease, thus hindering them from benefitting from the coordinated and planned health care for their individual needs, resulting, over the long term, in significant impacts upon the health system2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

In this light, it is extremely important to highlight that patient with a potential need for PC, along with their families, need social support as well as an interaction between the health system and engaged communities. Such actions are the key to increasing the reach and the effectiveness of the services offered by the health professionals. Thus, the integration between the health systems and social assistance has become crucial2525 Urquhart R, Kotecha J, Kendell C, Martin M, Han H, Lawson B, Tschupruk C, Marshall EG, Bennett C, Burge F. Stakeholders' views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews. Br J Gen Pract 2018; 68(674):e612-e620..

In most countries, PC is still a neglected issue, and for this reason, social and political actions are necessary to promote the well-being and quality of life of the people who have an urgent need for this type of care. More specifically, in the realm of PHC, PC stands out, as it deals with a reference scenario relevant to the majority of people with noncommunicable diseases (NCDs), given that these represent conditions that are outside of the therapeutic possibility of cure. In addition, it is important to remember the key role played by PHC in the humanization of care, which favors not only improvements in the quality of life, but also in the quality and continuity of medical care provided to individuals in PC, inside and outside of the home2828 Pereira DG, Fernandes J, Ferreira LS, Rabelo Ro, Pessalacia JDR, Souza RS. Meanings of palliative care in the view of nurses and managers of primary health care. Rev Enferm UFPE 2017; 11(Supl. 3):1357-1364..

In recent decades, some countries have sought to increase the empowerment of PHC in the coordination of other care levels and have included, among other services, embracement in PC with the support of interdisciplinary teams. When we refer to the Brazilian context, this interdisciplinary support from the PHC is offered by the Expanded Family Health and Primary Care Center (NASF, in Portuguese), but without distinctly clarifying PC actions in its guidelines66 Marcucci FCI, Perilla AB, Brun MM, Cabrera MAS. Identificação de pacientes com indicação de cuidados paliativos na Estratégia Saúde da Família: estudo exploratório. Cad Saude Colet 2016; 24(2):145-152.. The inclusion of PC in PHC has been seen as one of the main hindrances to the development of PC in Brazil2828 Pereira DG, Fernandes J, Ferreira LS, Rabelo Ro, Pessalacia JDR, Souza RS. Meanings of palliative care in the view of nurses and managers of primary health care. Rev Enferm UFPE 2017; 11(Supl. 3):1357-1364..

It is important to remember that the care provided by PC encompasses a wide range of conditions that can possibly be recommended, and should not be limited to the patient’s age or specific diseases. PC seeks to develop actions that will increase and maintain the quality of life of individuals with diseases that threaten life, or with no known cure, by controlling symptoms, encouraging autonomy, preventing complications, and providing psychosocial support to the patients and family members66 Marcucci FCI, Perilla AB, Brun MM, Cabrera MAS. Identificação de pacientes com indicação de cuidados paliativos na Estratégia Saúde da Família: estudo exploratório. Cad Saude Colet 2016; 24(2):145-152..

Considering the analysis of the PC interventions in the realm of PHC raised in this recent scoping review, the authors perceived the need for professional improvements on this theme2929 Oliveira JC, Nassif MS, Assunção MRS, Barrioso PDC, Costa ACB, Costa ICP. Nursing interventions in palliative care in primary health care: scoping review. RSD 2021; 10(8):e24710817365.. Consequently, it is important to emphasize that for the overall implementation of PCs, or any humanized and comprehensive medical care, academic and practical reflection is necessary in all health fields that value knowledge in interpersonal relations and not only technical-scientific knowledge3030 Côbo VA, Fabbro, Parreira ACSP, Pardi F. Palliative care in primary health care: the perspective of health professionals. Bol Acad Paul Psicol 2019; 39(97):225-235..

Conclusion

The present study analyzed the evidence available in the literature on the process of the identification of adult and elderly individuals with a potential need for PC in PHC, where a wide range of tools have been used as a means through which to aid in recognizing people who need PC, considering probable means through which PC can be implemented in the context of PHC.

This study highlights the pressing need for greater exploration of the theme through further research, since the demographic and epidemiological profiles point to an increase in people who with a potential need for PC.

In Brazil, continuing reflection and discussion on the early identification of the need for PC in PHC are warranted so that the guiding strategies concerning this approach become present at this care level, considering that the PNAB specifies the competencies of PHC in providing support to people with a potential need for PC.

As regards the limitations of the present review, what stands out are the restrictions relevant to the number of databases selected to search for studies, when the study was published (last four years), and the language (English, Portuguese, and Spanish), as well as the non-inclusion of gray literature.

Among the gaps in knowledge produced on this theme, there is a lack of studies that investigate the approach used to identify people with a potential need for PC in PHC, indicating the need for future studies, since the process of global aging is contributing to the increase in this profile of users on the doorsteps of health systems.

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Publication Dates

  • Publication in this collection
    15 Aug 2022
  • Date of issue
    Sept 2022

History

  • Received
    19 Feb 2022
  • Accepted
    27 May 2022
  • Published
    29 May 2022
ABRASCO - Associação Brasileira de Saúde Coletiva Rio de Janeiro - RJ - Brazil
E-mail: revscol@fiocruz.br