Introduction

Population aging is now a phenomenon in developed and developing countries ¹. The proportion of people in their 60s and older worldwide is growing faster than the other age groups. It is estimated that by 2050 there will be two billion older people, of which 80 % will live in developing countries ². Despite these estimates, the Pan American Health Organization ³ published the World Report on Aging in 2022, expressing concern over widespread age-related healthcare rationing and indicating that health research tends to exclude older adults, even though several health conditions are more prevalent in elderly individuals.

The population's longevity, associated with social and family changes, such as the increasing insertion of women in the workplace and the reduction in the size of families, raise concerns regarding the care provided to the elderly who depend on third parties ⁴. It stands out that the increase in life expectancy and the high morbidity rate due to chronic-degenerative diseases are some of the most significant challenges for public health today ^5-7.

Although the disease affects the individual, its consequences also affect the family and the people who live and work with the patient, in a process that challenges and modifies family roles and group dynamics ⁸. In addition, the older adult's aging process leads to feelings that involve the perspective of life terminality, both for their families and the professional team ^9-11. Thus, with an aging population that will live and die under more complex conditions, the demand for care tends to increase, along with the demand for palliative care ^12-14.

Palliative care (PC) was defined in the 1990s and restated in 2002 by the World Health Organization (WHO) as a multidisciplinary approach that aims to improve the quality of life of patients and their families in the presence of a life-threatening illness through the prevention and relief of suffering, accurate and careful assessment, treatment of pain, and other demands (physical, psychosocial, or spiritual) ^5,8. More recently, this concept has been redefined, and PC now includes chronic conditions that are progressive from diagnosis, along with therapies that can modify or potentially cure the disease ^15,16.

PC must be regarded as a fundamental right of individuals and an essential component of comprehensive and integrated care throughout life, including at the end of life ¹⁰. Although a relatively new component of modern healthcare, it is becoming increasingly recognized as an essential part of all health systems ¹². It should be available in any healthcare setting, such as hospitals, long-term care facilities, health centers, and even in patients' homes ^16,17.

In 2018, recognizing the need to improve and implement evidence-based PC policies and to support the comprehensive improvement of health systems at all levels, the Ministério da Saúde (Ministry of Health) of Brazil published Resolution 41, which provides guidelines for the organization of PC in light of integrated continuous care within the scope of Brazil's Sistema Único de Saúde (Unified Health System) ¹⁸.

However, the implementation of comprehensive care in the Rede de Atenção à Saúde - RAS (Healthcare Network System - HNS) implies strategies that anticipate the transition of this type of care across various levels within this System. The transition of care is a strategy that involves a group of planned measures to ensure the continuity and safe coordination of the care provided, which can increase the quality of life of patients and their families ^19,20.

Therefore, conducting studies that allow a broader view of PC in the HNS is considered relevant, so patients and their families can receive comprehensive care. Given the above, this study aims to map the scientific evidence related to the organization of PC practices for older adults in the HNS.

Materials and methods

This scoping review is based on the international guidelines of the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR [21]), whose protocol was registered in the Open Science Framework (https://osf.io/83p7u/). The review was conducted according to the Joanna Briggs Institute ²² methodological guidelines, with the following steps: 1) identification of the research question; 2) identification of relevant studies; 3) study selection; 4) data analysis; 5) data grouping, synthesis, and presentation.

The review question and the inclusion and exclusion criteria were discussed and agreed upon by the researchers. The guiding question was defined using the PCC strategy, where P (population) is older adults, C (concept) is PC, and C (context) is the HNS. The question was: "How are PC practices organized for the elderly in the HNS?"

The sample was composed of studies that met the following inclusion criteria: Articles published in national and international journals from January 2010 to March 2021 in Portuguese, English, and Spanish. Articles that were not available in full-text were excluded, as well as gray literature, such as monographs, dissertations, theses, books, blogs, editorials, and guidelines. It is noteworthy that the gray literature was excluded to eliminate possible biases related to the inclusion of evidence with value judgment or opinions that failed to represent the subject matter; furthermore, due to the possibility of excessive volume of material, it would require the expansion of the inclusion criteria, possibly affecting the sample of scientific articles found. Studies that described and discussed the organization of PC practices for the elderly from the perspective of the HNS were considered eligible.

The search strategy was carried out by a librarian at the Biblioteca Baeta Vianna (Baeta Vianna Library) of the Universidade Federal de Minas Gerais (Federal University of Minas Gerais), Brazil. The articles found were managed using the Endnote software, which allowed peer review to be carried out independently. The search was conducted in April 2021 in the following databases: Medline®/ National Library of Medicine (PubMed), Scopus, Cumulative Index to Nursing and Allied Health Literature (Cinahl), Web of Science (WoS), Embase, Cochrane, and Biblioteca Virtual de Saúde (BVS). The Health Sciences Descriptors (DecS) and Medical Subject Headings (MeSH) related to the elements of the research question were used, as shown in Table 1.

The first step involved searching the databases and extracting the identified articles into the EndNote® software. The articles then had their titles and abstracts read and analyzed by six reviewers, who worked in pairs in a double-blind format to select the potential eligible articles. In cases of doubts regarding inclusion, the researchers performed the inclusion analysis jointly.

The articles that composed the final sample were read in full by all reviewers independently, aiming to answer the review question and extract the data of interest. It should be noted that the reference lists of the article sample included in the review were examined for additional sources. However, no articles were added. Subsequently, the data were organized in a spreadsheet created in Microsoft Excel 2016, whose structure contemplated essential elements of the studies: Publication year, country of origin, objectives, study type, population, study site, and main results. The data synthesis is descriptively presented in this article and discussed with the relevant literature.

Results

A total of 1,150 articles were identified in the database search, and the final sample consisted of 12 articles, as shown in Figure 1.

Source: Elaborated by the authors.

Figure 1 Study selection flowchart, adapted from PRISMA-ScR, Belo Horizonte, Minas Gerais, Brazil, 2022  

The 12 articles included in this review were organized into a bibliographic framework presented in Table 2, containing the article title, country of origin, publication year, type of study, and result synthesis.

The results, in general, demonstrated the importance of PC practices for the elderly to be organized in the HNS, with primary healthcare, home care, and interdisciplinary coordination with the geriatrics specialty as key to the comprehensiveness and continuity of care.

Discussion

Although the articles analyzed mention the importance of inserting and discussing PC in an integrated health system, in practice, there is still fragmentation in the provision of this care, with limited considerations regarding the challenges and possibilities of the effectiveness of PC at all levels of care. We noticed that most of them choose to emphasize one of the levels of healthcare, prioritizing primary healthcare and home care. From this perspective, they understand that primary care explores the light care technologies, which include communication, welcoming, bonding, listening ³⁵, establishing trust, and allowing more significant interaction with the elderly and their families/caregivers in the development and implementation of the care plan.

The increase in life expectancy and population aging leads the elderly to die primarily due to chronic diseases ³⁶. With aging and the progression of these diseases, older adults tend to be subjected to unnecessary suffering, resulting in a compromised quality of life at the end of life ^37,38. This happens because public health has failed to manage and follow up on the burden of non-communicable diseases in the aging population, such as chronic diseases, whose challenge is the loss of functional health ³⁶.

From this perspective, the WHO suggests integrating and providing PC throughout the lifespan ^27,39. In this review, we inferred that the insertion of PC throughout the entire HNS is a powerful strategy to promote the integration of PC practices for the elderly. In this sense, it was possible to identify in the sample initiatives and reflections that propose PC to the elderly from the perspective of an integrated healthcare system.

It is highlighted that care is a continuous process, where an individual may, at any given time, need to access more than one health system service, especially in aging populations that face the challenges of chronic diseases ⁴⁰. Moreover, the continuity of care is more than only the connection between the different levels, but it also depends on the information flow regarding the assistance provided between the different services ⁴⁰. In this regard, the authors ³¹ point out that the care provided in the different scenarios should be coordinated and easily transferable, constituting a safe and seamless care journey for the elderly and ensuring the patient's holistic experience. The successful joint operation of this system depends on an active interface between the various parts of the system ³¹.

A study ³⁴ conducted in Belgium suggests that the organization of a care system is essential for the provision of integrated PC. This description is like the proposed care model of the Brazilian health system organized from the perspective of care integration through the HNS ¹⁸. However, it is noteworthy that PC integration in a system requires administrative, organizational, clinical, and service aspects that enable the continuity of care throughout all agents involved ³⁴. Moreover, formalizing the system structure through government policies is insufficient to ensure successful inter-organizational collaboration. In practice, the collaboration process is complex. It entails overcoming challenges such as leadership, coordination, lack of critical organizational members to drive the cooperation, power imbalances, agents' varying expectations, cultural diversity, corporate governance, means of communication, and opportunities for interaction ³⁴.

Given these challenges mentioned by the authors, it is understandable why primary healthcare has been indicated in several of the studies analyzed as the care organizer in the care system ^{24,26-28,31,32}. Primary healthcare was recognized in such studies for its relevance in developing PC measures for the elderly. The articles explored primary healthcare considering its role as a care organizer in the system, its properties of integrating different services and prioritizing light care technologies, and its proximity and relationship with the region and home setting.

Primary healthcare engagement and participation in the coordination and continuity of care are factors that operate to maximize general health outcomes ²⁴. Patient-centered care and continuity of care improve discussions, resulting in the unity of patient and health provider objectives for future care and improved end-of-life outcomes ²⁶. Regarding PC at the primary level, a study carried out in the United States ²⁴ indicated that primary care physicians are vital to providing competent PC at this level of care, with preliminary evidence that the engagement of these professionals is a source of regional variation in the standard of care offered at the end of life. The study results ²⁴ indicate that patients who received greater engagement in primary care provided by physicians experienced fewer hospitalizations and intensive care procedures in the last six months of life and, consequently, lower healthcare costs.

Also of note is that the care provided to the frail elderly at this level of care improves patient satisfaction and reduces the transfer of the elderly to long-stay institutions and inadequate hospital admissions ³¹. The present study results corroborate a literature review ⁴¹ conducted on the role of primary healthcare in PC for the elderly, which indicates as benefits of PC at this level of care factors such as the improvement of symptoms manifested by patients, their satisfaction, and the reduction of hospitalizations at the tertiary level and expenses with specialized services.

However, challenges remain in the organization of the health system in primary healthcare to be overcome for incorporating PC in its scope of action, especially regarding the lack of professional training and educational activities aimed at the patients and their families ⁴². The importance of nurses and managers at this level of care to recognize PC opportunities that offer families and patients adequate and quality care is highlighted. Therefore, they suggest two fronts of action in this scenario: The training and discussion forum on the topic and community awareness regarding the importance of PC ⁴².

Still, on the importance of primary healthcare in PC, the study analyzed ²⁷ in this review indicates that PC for the elderly should include the promotion, prevention, and rehabilitation measures, with guidelines for training volunteers and caregivers for the elderly at the primary level and considering the participation of family and society in the interdisciplinary work with the health team ²⁷. In this sense, it is essential to emphasize that primary healthcare in PC needs a healthcare network system that offers specialized services in PC, among the other services, whose criteria for referral are the patients' needs and not only their limiting characteristics ^43,44.

It was highlighted in the studies as the basic level of care for the continuity of healthcare between the different levels of care, considering the role of primary healthcare in the health system ²⁶. It can be attributed to the fact that primary healthcare is the closest to patients, their families, and homes, the favored care location for the elderly in PC, with the possibility of better bonding and resolution ⁴³.

Regarding the continuity of care, a study ²⁶ analyzed in this review states the importance of every care transition of the older adults in PC (specialized consultation, hospital discharge, performance of procedures, or referral to long-term care facilities) as an opportunity for monitoring, adjustment, and definition of care goals. The authors emphasize that this is a potential developed by primary healthcare professionals, as it implies the availability of the physician's time for consultation and contact with specialists who provide care to the patient. This process is assisted by professionals at the primary level, as it is perceived that they have the time, ability, and willingness to discuss PC with patients and their families, in addition to a dynamic health team ²⁶. Primary healthcare, in addition to centering patient care, also improves the emotional support provided to patients and their families since the professionals engage in empathic communication, promoting the discussion of the objectives of PC ^26,30.

However, it should be considered that the continuity of care for the elderly in PC is still fragile due to the professionals' lack of knowledge concerning this type of care, the health system's lack of planning for the epidemiological transition with population aging, and the lack of integration between health services ^41,44,45, especially when patients are transferred to hospital care and in the processes related to discharge from this service ⁴⁵. Continuity of care happens effectively when the dimensions of time/environment, patient-professional relationship, communication, and management are aligned ^44,45. In addition, planning, information exchange (face-to-face, telecommunication, or electronic medical records), ongoing interaction and coordination, and clear roles between services, whether for home or another level of care, are essential for the transition of care ^44,45.

It is also noteworthy the emphasis of studies ^29,33 on the role of primary healthcare nurses in promoting PC to the elderly. Although the multi-professional team is considered relevant, the nurses are recognized as critical agents in overcoming the limitation of PC availability in different contexts ⁴⁶. Several aspects were mentioned regarding the nurses' attributes that favor their participation in end-of-life care: Their greater availability of time than physicians to be with patients; the promotion for patients to receive the best PC possible; the centrality of patients in holistic care; the competence to manage pain and other symptoms; the ability to share care with other professionals and services, focusing on the continuity of care and not only on transfer ^29,33. However, the nurses' autonomy in PC is still limited, primarily associated with the referring physician, and their participation in care depends on them ³³. Other studies ^47-49 corroborate the present review, as they recognize the importance of nurses in PC for the elderly, especially considering their relational and technical skills. However, they emphasize the limitations of nursing work due to the lack of specialized qualifications and limited recognition by the health team.

That said, considering the epidemiological and demographic overview of the population, it is increasingly necessary to focus on healthy aging, with the comfort and well-being of patients in line with a sustainable health system, which has the home as the primary location for care ^27-30. These authors indicate the importance of the home being part of the care network for the elderly in PC. In addition to being a strategy to reduce avoidable expenses for the system, society, and family, it is an environment defined by the patients and their families capable of meeting the patients' demands, which encompass more than the physical aspect, including existing relationships.

An analysis of the operational viability of PC intervention at home offered to elderly returning from intensive care units showed improvements in physical functioning, quality of life, and symptom management, leading to patient satisfaction ⁵⁰. In this regard, studies ^28,30 indicate that most elderly eligible for PC currently spends their end of life in hospital institutions, often against their will, due to unnecessary transfers. The health system's frailties include the absence of a health system designed for the care of chronic diseases, the impaired relationship between professionals and patients due to the short consultation time, the long wait for appointments, and the limited number of professionals dedicated to PC ²⁷. Overcoming these frailties implies forming a system in a network, with the primary level of healthcare as the structuring line of care, with improved range, home, and families ²⁷.

For good practices to be established at home, the authors ^28-31 mention the importance of a formalized care plan with supporting information for the elderly, caregiver, and family; the need for communication, teamwork, and the availability of time and interaction with the family; the integration of a multi-professional approach rather than a physician-centered approach; the monitoring of the quality of care, requiring robust clinical governance, research, and adequate professional training; the prioritization of the bond with a team rather than several professionals and single specialists in the treatment ^28-31 PC at home increases patients' and caregivers' sense of security as they must deal with life-threatening diseases in this environment ⁵¹.

Another vital aspect mentioned in studies ^23,31 regarding the health network for elderly care in PC is the importance of services having interdisciplinary coordination with the geriatrics specialty as a connection to best practices, providing an integrated care approach. Regarding this coordination, a study that sought to identify barriers and enablers of integration in the European context ²³ indicated that the form of organization and fragmentation of healthcare, along with the participation of several health professionals in care, seem to hinder this process. In contrast, strong leadership was identified as an enabler at both the clinical practice and the strategic and political levels. Strong leadership locally and nationally can support ongoing communication between organization members and the development of new initiatives in the integration of PC and geriatrics ²³.

In a prospective controlled study ⁵² that compared elderly patients in home PC, followed up by primary healthcare and elderly patients who, in addition to this follow-up, received a geriatric home intervention and the availability of 24-hour geriatric service, the rate of hospitalizations and emergency care, as well as unnecessary hospitalizations after the first year of intervention, were reduced. There was an increase in the proportion of patients who died at home. The authors emphasize that although death at home was considered a favorable outcome, an integrated care model in the service network is essential so that patients who prefer or need to be hospitalized have easy access to this resource.

Also worth highlighting is the care provided to older people with dementia. In an aging society, dementia, a chronic, progressive, and terminal disease leading to complex care needs, is increasingly present. The cognitive decline caused by this disease weakens the patients' leading role in their care process, requiring intense family participation ³⁰. Authors ²⁵ indicate that dementia is still neglected mainly from the perspective of PC for the elderly since it is considered a natural aging condition. Person-centered care, with family participation for optimal communication and decision making, as well as training in communication skills and orientation for professionals, are still barriers to the consolidation of PC for the elderly with dementia ²⁵. From this perspective, the ideal PC for the elderly with dementia includes discussing the prognosis and care plan with patients and caregivers, patient access to services, and standardized guidelines, as these can contribute to the first approach but may lead to the loss of patient-centered care ⁵³.

As a study limitation, it is worth mentioning that the theme is still nascent in the literature, and only 12 articles were selected from the researched databases. In addition, the option to use DeCS and MeSH may have limited the search scope and resulted in the loss of essential documents that discussed the theme in question.

Conclusions

When mapping the scientific evidence related to the organization of PC practices for the elderly in the HNS, it is noted that, given the impact of aging on society, discussions around PC for the elderly and their families are still modest. Although the studies indicate the importance of the insertion of PC within a care network, having primary healthcare as the organizer of these practices, the concept of a network effectively established is still developing, which indicates fragmented assistance. However, the coordination between more than one level of care is eventually addressed. They also address the importance of PC being provided in the home/residence of the elderly, which favors the interface with primary care. At this level, it has the location and people's homes as the object of care.

One of the gaps identified in this review was the low number of studies published by countries that have been facing the challenges of aging, highlighting the limited discussion around solid national policies and guidelines that direct these practices. It is believed that this study can contribute to shedding light on the theme, broadening discussions that reach society, multi-professional teams, and health system managers in the search for an HNS that integrates PC at all levels of care.