Skip to main content

A model for integrating palliative care into Eastern Mediterranean health systems with a primary care approach

Abstract

Background and aims

Palliative care in the Eastern Mediterranean Region (EMR) faces challenges despite the high number of patients in need. To provide accessible, affordable, and timely services, it is crucial to adopt a suitable care model. World health organization (WHO) recommends integrating palliative care with primary health care (PHC). Given the unique conditions of EMR countries, there is a need to design a model tailored to these contexts.

Methods

This study is a multi-method research project conducted through several sub-studies, including a literature review, policy analysis, expert opinion (Delphi Method), dimension-specific analysis, model development, and its validation and refinement (Delphi Method). Drawing from the WHO model, six dimensions: policy, drug availability, education, community integration, service delivery, and research were considered to developing the model and implementation requirements. Within each dimension, evidence-based solutions tailored to the region’s context were explored.

Results

A successful palliative care model requires, in the policy dimension, oversight by the Ministry of Health (MOH). Having a focal-person or working group within the MOH is crucial for policy-making, formulation, and approval of clinical guidelines, as well as addressing care challenges. It is essential to provide access to morphine and other essential medications, along with facilitating the administration and consumption of morphine at home. Conducting empowerment courses for care providers, can address various challenges. Community involvement through volunteers, charities, and non-governmental organizations (NGOs) is also important. To ensure service provision, monitoring and evaluating systems are crucial, along with striving for service continuity through an appropriate payment system. Lastly, research is necessary for needs assessment, evidence-based practice, and designing evaluation indicators. The proposed model relies on community health workers, especially nurses, as multitasking professionals available for community palliative care. In the presented model, special attention has been given to networking, collaboration, and the use of digital health technologies to support nurses.

Conclusion

The model proposed for integrating palliative care into PHC should serve as a framework that enhances access to available and affordable services for countries in the region. While this model was developed based on the overall conditions of the region, each country can tailor it to its unique strengths and opportunities.

Peer Review reports

Introduction

The Eastern Mediterranean region (EMR), as classified by the World Health Organization (WHO), comprises 22 countries. Although these countries have similarities in language, religion and culture, there are peculiarities in health systems structure, development, and resources. Economic status is not the sole determinant in terms of palliative care development. In addition, many people in the region face significant challenges in accessing health care due to ongoing political instability, conflicts, and forced migration [1]. These varying social and health contexts evidently influence the development of palliative care [2].

The status of palliative care services in the EMR appears to be less favourable compared to other WHO regions [3]. According to global data, palliative care is limited in 82% of the countries in this region, with morphine rarely available for pain relief [4]. Notably, none of the 22 countries of the EMR has achieved integration of palliative care into its healthcare system, and only 4 countries have better than isolated palliative care provision [5]. The number of palliative care providers in the region falls short of meeting the population’s needs. Services are predominantly concentrated in urban areas, making them less accessible to individuals residing in distant rural communities [6].

Several factors contribute to the lack of access to these services. These broadly include health care professionals’ lack of knowledge [7], restrictive laws and regulations governing access to opioids, regulatory barriers [8, 9], misconceptions or lack of knowledge about opioids [10], passive or weak presence of palliative care services and none availability of palliative care specialists [11]. There is also a general absence of government policies that recognize palliative care as an essential component of health care. This is compounded by insufficient education for health care professionals and the public about the necessity and importance of palliative care as an integral part of care [3, 12]. The lack of collaboration among scientific societies [13] and, consequently, the absence of clinical services [14], further exacerbate the situation.

In 2016, WHO recommended that, to achieve the Sustainable Development Goals (SDGs) and Universal Health Coverage (UHC), health systems should incorporate community-based palliative care into Primary Health Care (PHC) programs. This would ensure that these services are provided by first-level contact service providers to patients and their families [15, 16]. Palliative care and PHC share several principles, including continuous care, social accountability, respect for patient values, and attention to the care needs of patients and their families [15]. PHC serves as the foundation of a sustainable health system for UHC and health-related SDGs, enabling individuals to meet their health care needs throughout their lives [17].

PHC refers to essential health care based on practical, scientifically sound, and socially acceptable methods and technology, which should be universally accessible and affordable for individuals and society [18]. The principles of PHC—equality, solidarity, social justice, universal access to services, decentralization, and community participation—are also fundamental to palliative care. This highlights the inseparability of PHC and palliative care [19, 20].

Evidence indicates that most people worldwide prefer to spend the final phase of their lives at home [21, 22]. To honor this preference and alleviate overcrowding in costly hospitals, palliative care should be provided in the community and patients’ homes. Pain relief and palliative care programs must be integrated into existing health care systems to ensure accessibility in patients’ homes [23].

Palliative care is an approach that enhances the quality of life of patients and their families facing life-threatening diseases. It prevents and alleviates pain through the identification, assessment, and primary treatment of pain and other physical, psychological, social, and spiritual symptoms [3]. Palliative care is provided in various settings such as hospices, homes, specialized service centres, communities, and hospitals, offering support to patients, caregivers, and patients’ families [24]. However, the provision of palliative care should align with patients’ wishes and preferences [2], which is often at the community level, primarily in their homes [25,26,27,28].

The term ‘Preferred Place of Death’ (PPOD) refers to individuals’ desire to die in a specific location or the occurrence of death in a favored place [29]. In recent decades, the ability to choose and influence PPOD has gained prominence as a crucial indicator for enhancing the quality of end-of-life care within palliative services. It is also recognized as one of the criteria for a dignified death [30, 31]. Given that the place of death significantly impacts the allocation of medical resources, it remains a critical concern for health policymakers [30]. Therefore, it is essential that palliative care be accessible in the community and in patients’ homes [25,26,27,28, 32, 33].

The European Union, along with several countries including Canada, Spain, and recently Brazil, have incorporated end-of-life care and palliative care at the PHC level into their current programs [26, 34, 35]. In 2018, WHO published the booklet which provides practical guidance on the steps required to support national leaders and clinicians in worldwide to further develop palliative care services within primary care settings [15].

Community-based palliative care offers several benefits. It facilitates patients’ access to health care [36], improves the quality of life for patients and caregivers, reduces the length of hospitalization [37], decreases the rate of referrals to emergency departments [38], and ultimately increases the number of peaceful at-home deaths [39]. To achieve the integration of palliative care into PHC, several requirements have been identified including the formulation of appropriate policies, ensuring the availability of essential palliative care medicines (especially opioids), and providing training to health care professionals, policy makers, and the public [24, 40].

Primary palliative care is practised by PHC workers, who are the principal providers of integrated health care for people in local communities throughout their life. It includes early identification of the need for and triggering of palliative care as well as its delivery as an integral component of integrated and holistic chronic disease management, collaborating with specialist palliative care services where they exist, and strengthening underlying professional capabilities in primary care [41].

The model for integrating palliative care into PHC developed by WHO encompasses these critical elements, namely, health policies, the use of essential medicines, integrated palliative care services, education and training, empowerment of people and communities, and research [42].

Primary palliative care is delivered in various ways across Low- and Middle-Income Countries (LMICs), influenced by historical events, government policies, resource availability, cultural norms, and social networks. The literature on primary palliative care in LMICs is limited, and published studies may not fully capture all the services provided [43].

Countries should evaluate the micro- and macro-economic benefits of integrating a palliative care approach into primary care and take steps to ensure access to all components of essential palliative care for everyone, everywhere in the country. These steps include supporting national policies, strengthening the integration of palliative care into the national health care system, training providers, and ensuring accessible and affordable medicines. This approach leads to cost savings for people and the health system, reduces inequalities, and improves the quality of care [44].

Despite WHO’s efforts aimed at improving the quality of care, reducing the costs of services, and enhancing the PHC program in the EMR, there is a lack of a coherent program to provide palliative care to patients and their families, particularly in an integrated format within the PHC in LMICs [45]. Given that the integration model should be designed based on cultural, social, and economic conditions, as well as the characteristics of the health system, this paper aims to describe an integrated model of palliative care in PHC for the EMR. This model will serve as a roadmap for implementation in the countries of the EMR. The ultimate goal is to ensure that palliative care is accessible and effective, meeting the needs of patients and their families in these countries.

Methods

The current study was a multi-method research project, addressed separately in several sub-studies (Fig. 1).

Fig. 1
figure 1

The flowchart of stages of methods. PC: Palliative Care

Literature review

The first sub-study involved a literature review aimed at identifying global recommendations and best practices from WHO and other relevant bodies. Information was collected from international electronic databases including PubMed, Scopus, ISI, ProQuest, Nursing Index, CINAHL, Elsevier, and ScienceDirect. English articles from 1980 to 2024 were searched using keywords such as “Palliative care,” “Primary health care,” “Care model,” “Health system,” “Integration,” “EMR,” and “Eastern Mediterranean Region.”

The inclusion criteria encompassed instructions, guidelines, and documents related to palliative care and its integration into PHC, as well as articles published in journals with various qualitative, quantitative, and mixed-method designs, all printed in English. A manual search was also conducted using Google Scholar to ensure comprehensive coverage. Exclusion criteria included conference articles, letters to the editor, commentaries, and reviews.

Two researchers independently evaluated the study selection stage by checking the titles and abstracts of documents and articles. Those meeting the inclusion criteria were then screened by the research team, who reviewed the full texts. The study selection process, based on the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) checklist, is presented in Fig. 2.

Fig. 2
figure 2

PRISMA Flowchart for the Search Strategy and Results

After extracting key concepts from the full texts, data analysis was conducted to identify and classify them according to the dimensions mentioned in the WHO guide (Drug Availability, Policy, Service Delivery, Education, Community Integration, Research). Each extracted concept was initially considered a separate code. Two researchers independently categorized these codes based on conceptual similarity. Any disagreements or ungrouped cases were reviewed by a third researcher, and the ungrouped findings were classified analogically using defined themes and classes. Finally, to ensure understanding and consistency of themes and sub-themes, the results were checked and confirmed by two additional researchers.

Policy analysis

The second sub-study was a policy analysis aimed at determining the current policies and frameworks in EMR countries to understand the existing landscape of palliative care, as well as the gaps and opportunities for integrating palliative care into PHC. The research community comprised the palliative care systems of EMR within the scope of national care programs.

To obtain appropriate data on palliative care models, databases from authoritative and governmental centers of these countries were consulted, and palliative care programs and models were reviewed. After evaluating different palliative care models, the status of palliative care programs was determined based on the dimensions extracted from the WHO guidelines.

Political documents related to palliative care, including documents, minutes, laws, regulations, guidelines, approvals, programs, reports, articles, news, meeting statements, and speeches, were identified through published sources, studies, and reports, as well as interviews with key informants from the respective countries. The documents were collected by visiting the websites of these countries, and their data were extracted after a credibility evaluation.

The output of phases 1 and 2 was a preliminary draft which was developed using the SWOT framework (Strengths, Weaknesses, Opportunities, and Threats) as the conceptual basis. According to this model, selecting an appropriate strategy maximizes a program’s strengths and opportunities while minimizing its weaknesses and threats [46].

Expert opinion (Delphi Method)

This part of the research was conducted as a Delphi study aimed at gathering insights on local needs, challenges, and practical solutions for integrating palliative care which was prepared as a draft according the integrated results of phases 1 and 2. This part of the research was conducted as a Delphi study aimed at gathering insights on local needs, challenges, and practical solutions for integrating palliative care. The draft was prepared based on the integrated results of phases 1 and 2. A group of experts (n = 10), including policymakers in palliative care, regional experts, care providers, and faculty members, were selected using a purposive sampling method based on their scientific, clinical, administrative, and research experiences. Through the Delphi study, the experts provided practical solutions for integrating palliative care into PHC, drawing from the needs and challenges identified in the previous stages and their own views and experiences.

In the first round of the Delphi study, relevant experts were asked to express their answers in the form of indicators related to each component. The first-round questionnaire was designed and sent in an open-ended and unstructured format to adhere to the principles of a Delphi panel while allowing experts to freely answer the questions based on their knowledge and experiences. This approach aimed to reveal all aspects related to the subject.

Panel members were asked to express their opinions and categories regarding the questionnaire questions freely and anonymously. At the end of the questionnaire, they were asked if they considered any additional components not listed. After collecting the returned questionnaires, repeated answers were combined, and similar comments were aggregated and shortened as much as possible. The answers were then organized and grouped.

The result of this stage was the identification of the main components and the indicators related to these components, which the researchers used to create a structured questionnaire for the second round of the panel.

In the second round, participants were asked to indicate their agreement or disagreement with the indicators using scores from 1 to 5. After collecting the second round of questionnaires, the data were analyzed, and the agreement coefficient for all indicators was calculated.

At the end of each component of the second-round questionnaire, to provide another opportunity to complete the answers, participants were asked to note any additional components or indicators not mentioned, after commenting on each indicator.

Dimension-specific analysis

After conducting the Delphi study, several meetings were held with a group of experts active in the field of palliative care from EMR countries to analyze specific dimensions based on the experts’ opinions.

  • Policy: Assessing the role of the Ministry of Health (MOH) in overseeing palliative care, including the establishment of a focal person or working group for policy-making and guideline formulation.

  • Drug Availability: Evaluating access to essential medications, such as morphine, and propose strategies to facilitate their administration and consumption at home.

  • Education: Developing training programs for care providers at preliminary, intermediate, and advanced levels to address various challenges in palliative care.

  • Community Integration: Exploring the involvement of volunteers, charities, and NGOs in providing community-based palliative care.

  • Service Delivery: Designing monitoring and evaluation systems to ensure service provision and continuity, supported by an appropriate payment system.

  • Research: Conducting needs assessments, promoting evidence-based practices, and designing evaluation indicators to measure the effectiveness of the proposed model.

Model development

At this stage, the results from the previous stages (literature review, policy analysis, and expert opinions) were combined to create a comprehensive model tailored to the unique conditions of EMR countries. This model emphasizes the role of community health workers, especially nurses, in providing palliative care. Additionally, the use of digital health technologies was developed to support networking, collaboration, and service delivery at home.

Validation and refinement (Delphi Method)

At this stage, experts and policymakers were involved in finalizing the model. The importance, scientific validity, and operational applicability were confirmed, and the experts were asked to provide their corrective opinions. Based on the feedback and practical implementation experiences, the proposed model was subsequently modified.

The proposed model

Comprehensive integration of palliative care at the PHC level involves several key steps. These include understanding the local context, assessing capacity and needs through stakeholder engagement, conducting co-design workshops, and piloting a demonstration project in selected PHC settings The project should encompass training initiatives, the establishment of a network across different levels of care, rigorous program evaluation, and a thorough cost analysis. Based on the outcomes, feasible implementation modalities can be considered for broader scale-up. These follow the afore-mentioned WHO public health model for palliative care, which includes policy, drug availability, training, community engagement, ensuring service provision, and research.

Policy

According to the WHO model, policy plays a pivotal role in shaping effective palliative care service delivery. Indeed, suitable policies act as an umbrella, enabling other dimensions and hence carrying greater significance than other aspects [47]. Key policies include ensuring palliative care is part of the health services provided at the primary care; establishing a national coordinating authority (e.g., a unit or department) responsible for palliative care within the MOH or equivalent; enacting laws to guarantee access to and regulation of palliative care services; and developing guidelines for delivering palliative care services in community settings [48].

A focal person for palliative care at MOH is necessary. This can be a part-time temporary appointment whose tasks include lead on writing up a palliative care strategy for the country; promoting community-based palliative care education; ensuring availability of oral opioids; might devise in the future an electronic system for oral morphine dispensing; early integration of palliative care with oncology and other chronic conditions; ensure availability and coverage by insurance for essential medications and supplies; advocacy programs; and implementation and monitoring of projects [24].

Moreover, a technical advisory group (or Taskforce) for palliative care is essential; they are the stakeholders who can be consulted and are requested to facilitate and advocate for palliative care issues. Their membership includes the palliative care specialists, head of pharmacy department, head of primary health centres, representative of Ministry of Higher education, representative from Ministry of Finance and Ministry of Social affairs (both optional), civil society, and patient/family representatives [49].

While health care professionals should be encouraged to work in an evidence-based manner, clinical guidelines and service packages can be developed by adapting well-established guidelines to each country’s unique situation and the available medications [50].

Drug availability

A crucial aspect of palliative care service delivery in every setting involves regulating medicine policies to ensure effective and safe procurement. Policy makers are responsible for reviewing and revising laws and regulations related to drug control including registration, distribution, accountability, pricing, and prescribing methods. Additionally, their role is to monitor supply chains to ensure the availability and affordability of essential palliative care medications, including oral morphine [51].

Generally, to ensure drug availability for community-based palliative care, two main points should be considered. The first one is access to oral and injectable morphine, along with the possibility of dispensing such medications at home. The other point is availability and access to the essential list of palliative care medications at affordable prices [24].

Facilitating home dispensing of oral and injectable morphine allows patients to receive pain relief without unnecessary hospital visits. Home-based palliative care services should include provisions for dispensing and administering morphine at home, especially for patients with mobility limitations.

Palliative care relies on a range of medications beyond morphine. These include medications for symptom management (e.g., antiemetics, laxatives, anxiolytics), wound care (e.g., dressings, topical analgesics), and supportive care (e.g., antipyretics, antihistamines). Ensuring availability of this essential list of medications is crucial [52].

Additionally, high costs can be a barrier to accessing palliative care medications. Policymakers should work toward pricing policies that make these medications affordable for patients, families, and health systems. This involves negotiations with pharmaceutical companies, bulk procurement, and subsidies to reduce financial burden [53].

Training

The majority of palliative care needs can be addressed by health professionals trained in basic palliative care (level 1) [54], which includes communication skills, symptom management, the ethics of palliative care, and addressing social, psychological, and spiritual issues. This comprehensive training contributes to a holistic approach to patient care. Achieving this comprehensive training can occur through various avenues, including undergraduate curricula, continuous medical education programs, or pre-registration initiatives. Beyond managing palliative care issues effectively, these skills also enhance referrals to dedicated palliative care services [55].

Intermediate-level training (Level 2) is particularly beneficial for health professionals who have direct and continuous contact with patients requiring palliative care [56]. This extended training program includes specialized areas such as pediatric palliative care, practical assignments, and complex communication topics. It is essential that this training be mandatory for oncology and family medicine specialists and optional for other residents [49].

Advanced training (Level 3) is attainable through higher degrees in or residency programs in palliative medicine. Graduates from such programs play a crucial role in training professionals at other levels and supporting policy and service development. Teams comprising personnel trained at the tertiary level can effectively manage the most complex cases [57]. Of course, advanced training is not necessary for the integrated model of palliative care, especially when such services cannot be provided at the PHC level.

Community engagement

Utilizing and training community volunteers to contribute to palliative care represents a promising approach, particularly in addressing social, psychological, and spiritual needs [58]. These volunteers can receive training, apply their acquired knowledge during regular home visits, and assist in identifying patients who require palliative care. Additionally, their involvement can help foster acceptance within the community [59, 60].

Empowering patients and their families as active participants in their care is crucial. Through targeted awareness programmes, patients and families can better understand their disease and its potential outcomes. Furthermore, a comprehensive, long-term public education strategy should be developed in collaboration with partners such as government agencies and community leaders. This strategy aims to enhance public understanding of palliative care over time, promoting openness and acceptance of this valuable option when appropriate [61].

Awareness-raising and advocacy efforts at the community level are essential. These efforts may include organizing seminars, distributing informative leaflets, creating posters, and establishing support groups. Collaborating with local municipalities to incorporate endowments into palliative care projects can contribute to sustainable development [26, 62, 63]. Partnerships with civil society organizations further strengthen these initiatives and ensure continuity [64].

Service provision

For long-term sustainability and expansion, a robust system should be established to track patients who may require home care, community-based care, and end-of-life care. This system would utilize identification tools specifically designed for assessing palliative care needs, documenting diagnosis, disease stage, and performance status. An electronic platform would facilitate timely provision of care, enable consultation requests, and support follow-up through patient outcome scores. Additionally, this system would play a crucial role in quality assurance and evaluation.

As an alternative approach, consider engaging the municipality, community, or various health insurance providers to cover these essential services. Collaborating with these stakeholders can enhance access to palliative care and ensure its availability to those in need.

Research

Evidence should inform the contextual implementation of palliative care services at PHC level. Regular evaluation of the service including costs, benefits, and quality assurance enhances informed decision making by policy makers.

In this dimension, the initial focus should be on needs assessment, a fundamental activity for determining the level of care required by the target population [65]. To maximize the benefits of integrated palliative care in PHC, data related to patients’ needs, values, beliefs, and their suffering should be collected through situation analysis. This includes an examination of the most common and severe physical, psychological, social, and spiritual sufferings [16]. Needs assessment is an integral part of the service development process, and its results should be implemented and carefully planned [65].

Another area of interest is determining the cost-effectiveness of integrating community-based palliative care into PHC. While economic evaluation for palliative care has received limited attention and the available evidence remains insufficient, existing studies indicate that palliative care is cost-saving [65].

Program monitoring and evaluation indicators is another crucial dimension in this field. Various frameworks have been proposed for evaluating palliative care programs. One such framework consists of three hierarchical levels that assess impact and outcomes for consumers (patients, families, caregivers, and communities), providers (professionals, volunteers, organizations), and the care delivery system (structures, processes, networks, and relationships) [66].

The WHO publication “Assessing the Development of Palliative Care Worldwide: A Set of Actionable Indicators” provides a refined set of practical indicators that countries can use to monitor and assess the development of palliative care in every setting including community level [42].

The proposed model for delivery of palliative care services in primary health settings

The proposed model relies on community nurses as the backbone for conducting community palliative care, including home palliative care. These nurses can be accompanied by volunteers and other health professionals. The health professionals involved would include general practitioners from primary health centers and others affiliated with secondary or rarely tertiary health facilities. While these nurses receive basic training in palliative care, they will be supported as follows:

Networking and collaboration

Networking and collaboration between PHC staff (expected to be less specialized) and the tertiary palliative care team are recommended. This collaboration can occur through a series of training and mentoring activities, such as monthly sessions with regular constructive feedback following referrals.

Use of digital health technologies

Today, technology plays a crucial role in supporting healthcare professionals, including community nurses. The WHO defines digital health technologies as the use of information and communication technologies (ICT), digital, mobile, and wireless technologies to achieve health objectives (WHO, 2016). These technologies enhance healthcare delivery by supporting clinical decision-making and improving access to patient records and specialist consultations [67].

Notably, mHealth and telehealth are particularly important for remote monitoring, documenting patient needs and care preferences, and managing symptoms [68]. In PHC, these interventions also improve communication between patients and healthcare professionals, supporting self-assessment and symptom management [69]. However, implementing digital solutions as primary methods for healthcare service delivery requires careful consideration, including access to electronic devices, uninterrupted electricity, stable internet connectivity, digital literacy, language skills, and user-led recommendations for ongoing improvement [70].

Incorporating patient-reported outcomes

Digital technologies allow for the incorporation of patient-reported outcomes into treatment plans and healthcare systems with limited resources (both human and material) and can enable informed decisions by allocating resources to those most in need [70].

Overall, supportive supervision by providers with advanced training ensures successful implementation. Obviously, establishing a system for monitoring, evaluating, and compensating such services is essential.

Care coordination is much needed between the different health facilities and primary health centres in terms of referral and back referral. Clear referral pathways for different catchment areas, as well as referral forms should be posted at the MOH website, indicating which primary health centres have end-of-life care at home (hospice@home program) [71].

The usual referral pathway for complicated cases starts with a malignancy diagnosis at specialized centers. Patients may then be referred to comprehensive health service centers or directly to home care. As depicted in Fig. 3, there is potential for reverse referrals between health service centers and home health care centers, emphasizing integrated community-based palliative care within primary health center systems. The expected competencies needed at each level correspond with these transitions. Ultimately, this integrated approach aims toward achieving ‘Good Death’ at home for patients.

Fig. 3
figure 3

Integrated community-based palliative care in PHC system [76]

Here we are proposing a model, where personnel at PHC facilities can provide home care, including end-of-life care, through a system of networking and mentoring by palliative care specialists at tertiary health facilities, leveraging technology. While similar models for home care have been established in some countries within the region, they are not comprehensive and face challenges.

Table 1 shows that some requirements should have already been established in the country, (long-standing) – second row; while supplementary are additional aspects to improve palliative care services at primary health centers (PCaPHC). As such, to initiate PCaPHC, it is important to ensure access to oral morphine at home, the training of staff at PHC, and the networking with the palliative care specialists, with the supporting policies and systems in place.

Table 1 Summary of requirements for the model in terms of drug availability, education and implementation

Feasibility of the proposed model

The developed model aligns well with the conditions and requirements of many countries in the region and has practical applications. In some of these countries, efforts have been made to integrate palliative care into PHC. For example, Iran’s health system network provides basic health services and has the necessary infrastructure to implement these services nationwide.

Investigations by experts on palliative care structures in Iran indicate that community-based approaches, such as home care, are prioritized [72]. Currently, approximately 1200 home care centers are active across the country. However, the existing structures for providing community-based health services face challenges such as shortages of specialists and high costs due to lack of insurance coverage and limited access, which reduce the provision of these services at the community level [50, 73, 74].

Therefore, the proposed model in this study appears capable of addressing the challenges of home care in Iran and making its implementation more systematic.

Table 2 illustrates one such model, highlighting its challenges and proposed solutions. Palliative care at PHC can be delivered in different ways, e.g., Out patient clinics, day care i.e., admission for several hours, as well as home care, usually conducted by outreach teams or by community nurses in some settings.

Table 2 Current situation of home care by community nurses: lessons learnt from Iran

In another example from Saudi Arabia, palliative care was initially available only in some tertiary and secondary hospitals, but not at the primary care level. However, in 2018, the palliative care team at King Fahad Medical City Hospital (KFMC) began integrating palliative care at a Primary Health Care Center (PHCC). Family physicians working at the PHCC were trained in primary palliative care for three months before they started providing services [75]. Therefore it seems that the proposed model is practical for creating multidisciplinary palliative care teams at the primary care level which was recognized as an obstacle.

Conclusion

Despite being an innovative care approach in many EMR countries, community-based palliative care is not well-integrated into the PHC structure. Currently, private and charitable centers primarily provide home care to the covered population. Recognizing patients’ preference for receiving care at home and the successful PHC structure in many countries, it is essential to incorporate community-based palliative care services into this framework. In our study, we present an integrated model of community-based palliative care within PHC as a roadmap for the EMR.

This proposed model is derived from the WHO public health model for palliative care. It encompasses key elements such as policy development, drug availability, education, community integration, service delivery, and research. In this model, community nurses play a pivotal role in providing palliative and end-of-life care within the community, including at patients’ homes. Notably, the model emphasizes networking and collaboration, as well as the use of digital health technologies to support service providers. Additionally, conducting needs assessments and designing monitoring indicators for evaluating provided services are crucial components.

The findings of this study can guide policymakers in the field of palliative care. By enhancing various infrastructures, allocating resources effectively, and optimizing processes, we can improve satisfaction and patient outcomes through quality palliative care. Addressing these challenges necessitates strengthening the health systems of countries, with a focus on designing and implementing appropriate policies in this critical area.

Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

References

  1. Pourghazian N, Krakauer E, Salama S, Fadhil I, Osman H. The Eastern Mediterranean Regional Palliative Care Expert Network: Designing a roadmap for palliative care development in the region. East Mediterr Health J. 2022;27(8):610–3.

    Article  PubMed  Google Scholar 

  2. Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, Arreola-Ornelas H, Gómez-Dantés O, Rodriguez NM, Alleyne GA. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. Lancet. 2018;391(10128):1391–454.

    Article  PubMed  Google Scholar 

  3. Connor SR, Sepulveda Bermedo MC. Global atlas of palliative care at the end of life. 2018.

  4. Clark D, Baur N, Clelland D, Garralda E, López-Fidalgo J, Connor S, Centeno C. Mapping levels of palliative care development in 198 countries: the situation in 2017. J Pain Symptom Manag. 2020;59(4):794–807. e794.

    Article  Google Scholar 

  5. Connor SRMC, Jaramillo E, Harding R, Cleary J, Haste B, Knaul F, de Lima L, Krakauer E, Bhadelia A, Jiang X. 2020:2023-09.: Global atlas of palliative care. Worldwide hospice palliative care Alliance. World Health Organization. 2020, 2023(9):1-120.

  6. Shamieh O, Jazieh A-R. Modification and implementation of NCCN Guidelines™ on palliative care in the Middle East and North Africa Region. J Natl Compr Canc Netw. 2010;8(Suppl3):S–41.

    Google Scholar 

  7. Sajjadi M, Rassouli M, Khanali Mojen L. Nursing education in palliative care in Iran. J Palliat Care Med. 2015;4(1):1–5.

    Google Scholar 

  8. Krakauer EL, Wenk R, Buitrago R, Jenkins P, Scholten W. Opioid inaccessibility and its human consequences: reports from the field. J Pain Palliat Care Pharmacotherapy. 2010;24(3):239–43.

    Article  Google Scholar 

  9. Silbermann M. Current trends in opioid consumption globally and in Middle Eastern countries. J Pediatr Hematol Oncol. 2011;33(Suppl 1):S1-S5.

  10. Jemal A, Siegel R, Ward E, Hao Y, Xu J, Thun MJ. Cancer statistics. Cancer J Clin. 2009;59(4):225–49.

    Article  Google Scholar 

  11. Pitzer S, Kutschar P, Paal P, Mülleder P, Lorenzl S, Wosko P, Osterbrink J, Bükki J. Barriers for adult patients to access palliative care in hospitals: a mixed methods systematic review. J Pain Symptom Manag. 2023;67(1):e16–33.

    Article  Google Scholar 

  12. Ddungu H. Palliative care: what approaches are suitable in developing countries? Br J Haematol. 2011;154(6):728–35.

    Article  PubMed  Google Scholar 

  13. Fadhil I, Lyons G, Payne S. Barriers to, and opportunities for, palliative care development in the Eastern Mediterranean Region. Lancet Oncol. 2017;18(3):e176–84.

    Article  PubMed  Google Scholar 

  14. Krakauer EL, Kwete XJ, Rassouli M, Arreola-Ornelas H, Ashrafizadeh H, Bhadelia A, Liu YA, Méndez-Carniado O, Osman H, Knaul FM. Palliative care need in the Eastern Mediterranean Region and human resource requirements for effective response. PLOS Global Public Health. 2023;3(11):e0001980.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Organization WH. Why palliative care is an essential function of primary health care. : World Health Organ; 2018: 1–73.

  16. Organization WH. Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers and managers. 2018.

  17. Walraven G. The 2018 Astana declaration on primary health care, is it useful? J Global Health. 2019;9(1):010313.

    Article  Google Scholar 

  18. Organization WH. Primary health care: 25 years after ALMA-ATA. In.; 2003.

  19. Krakauer EL, Kwete X, Verguet S, Arreola-Ornelas H, Bhadelia A, Mendez O, Rodriguez NM, Ali Z, Allende S, Cleary JF. Palliative care and pain control. In., edn. Edited by Poverty. DCPIHaR. Washington (DC): The International Bank for Reconstruction and Development; 2018.

  20. Murray SA, Boyd K, Sheikh A, Thomas K, Higginson IJ. Developing primary palliative care. In., vol. 329: British Medical Journal Publishing Group; 2004: 1056–1057.

  21. Davies E, Higginson I. The solid facts palliative care WHO Regional Office for Europe: Copenhagen, Dennmark 2004.

  22. Gott M, Seymour J, Ingleton C, Gardiner C, Bellamy G. That’s part of everybody’s job’: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliat Med. 2012;26(3):232–41.

    Article  PubMed  Google Scholar 

  23. Organization, WH: WHO Expert Committee on Cancer Pain Relief and Palliative Care. Geneva: WHO Technical Report Series 1990(804:65–6)).

  24. Organization WH. Planning and implementing palliative care services: a guide for programme managers. 2016.

  25. Fereidouni A, Rassouli M, Karami M, Pakseresht M, Barasteh S. Preferred place of death challenges the allocation of health resources in Iran. Int J Palliat Nurs. 2023;29(11):553–4.

    Article  PubMed  Google Scholar 

  26. Fereidouni A, Rassouli M, Salesi M, Ashrafizadeh H, Barasteh S. Preferred place of death in adult cancer patients: a systematic review and meta-analysis. Front Psychol. 2021;12(1):704590.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Fereidouni A, Salesi M, Rassouli M, Hosseinzadegan F, Javid M, Karami M, Elahikhah M, Barasteh S. Preferred place of death and end-of-life care for adult cancer patients in Iran: a cross-sectional study. Front Oncol. 2022;12:911397.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Portorani A, Dehghan M, Mangolian Shahrbabaki P. Death at home: Iranian nurses’, cancer patients’, and family caregivers’ attitudes. Death Study. 2022;46(5):1123–7.

    Article  Google Scholar 

  29. Yamagishi A, Morita T, Miyashita M, Yoshida S, Akizuki N, Shirahige Y, Akiyama M, Eguchi K. Preferred place of care and place of death of the general public and cancer patients in Japan. Supportive care cancer: Official J Multinational Association Supportive Care Cancer. 2012;20(10):2575–82.

    Article  Google Scholar 

  30. Donkor A, Adotey PN, Ofori EO, Ayitey JA, Ferguson C, Luckett T, Vanderpuye V, Osei–Bonsu EB, Phelan C, Hunt K. Prevalence of preferences for end-of-life place of care and death among patients with Cancer in low- and Middle-Income countries: a systematic review and Meta-analysis. JCO Global Oncol. 2024;1(10):e2400014.

    Article  Google Scholar 

  31. Fereidouni A, Rassouli M, Salesi M, Ashrafizadeh H, Vahedian-Azimi A, Barasteh S. Preferred Place of Death in Adult Cancer patients: a systematic review and Meta-analysis. Front Psychol. 2021;12:704590.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Chen CH, Lin YC, Liu LN, Tang ST. Determinants of preference for home death among terminally ill patients with cancer in Taiwan: a cross-sectional survey study. J Nurs Res. 2014;22(1):37–44.

    Article  CAS  PubMed  Google Scholar 

  33. Blanchard CL, Ayeni O, O’Neil DS, Prigerson HG, Jacobson JS, Neugut AI, Joffe M, Mmoledi K, Ratshikana-Moloko M, Sackstein PE, et al. A prospective cohort study of factors Associated with Place of Death among patients with late-stage Cancer in Southern Africa. J Pain Symptom Manag. 2019;57(5):923–32.

    Article  Google Scholar 

  34. Sepúlveda GR. Cotidianidad Y Postura corporal. Boletín De Antropología Universidad De Antioquia. 2021;36(61):15–32.

    Article  Google Scholar 

  35. Murray SA, Kendall M, Mitchell G, Moine S, Amblas-Novellas J, Boyd K. Palliative care from diagnosis to death. BMJ. 2017;1(1):356–60.

    Google Scholar 

  36. Liberman D, Song E, Radbill L, Pham P, Derrington S. Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study. Child Care Health Dev. 2016;42(3):439–49.

    Article  CAS  PubMed  Google Scholar 

  37. Totten AM, White-Chu EF, Wasson N, Morgan E, Kansagara D, Davis-O’Reilly C, Goodlin S. Home-based primary care interventions. Agency Healthc Res Qual (US):(Comparative Eff Reviews. 2016;1(1):164.

    Google Scholar 

  38. Owens D, Eby K, Burson S, Green M, McGoodwin W, Isaac M. Primary Palliative Care Clinic Pilot Project demonstrates benefits of a nurse practitioner-directed clinic providing primary and palliative care. J Am Acad Nurse Pract. 2012;24(1):52–8.

    Article  PubMed  Google Scholar 

  39. Kim SL, Tarn DM. Effect of primary care involvement on end-of‐life care outcomes: a systematic review. J Am Geriatr Soc. 2016;64(10):1968–74.

    Article  PubMed  Google Scholar 

  40. Callaway MV, Connor SR, Foley KM. World Health Organization Public Health Model: a Roadmap for Palliative Care Development. J Pain Symptom Manag. 2018;55(2):S6–13.

    Article  Google Scholar 

  41. Munday D, Boyd K, Jeba J, Kimani K, Moine S, Grant L, Murray S. Defining primary palliative care for universal health coverage. Lancet. 2019;394(10199):621–2.

    Article  PubMed  Google Scholar 

  42. Organization WH. Assessing the development of palliative care worldwide: a set of actionable indicators. 2021.

  43. Peeler A, Afolabi O, Adcock M, Evans C, Nkhoma K, van Breevoort D, Farrant L, Harding R. Primary palliative care in low- and middle-income countries: a systematic review and thematic synthesis of the evidence for models and outcomes. Palliat Med 2024:02692163241248324.

  44. Pastrana T, Murray SA. The value and economic benefits of palliative care in primary care: an international perspective. Annals Palliat Med. 2024;13(2):445–51.

    Article  Google Scholar 

  45. Osman H, Yamout R. Palliative Care in the Arab World. In: Cancer in the Arab World. edn. Edited by Al-Shamsi HO, Abu-Gheida IH, Iqbal F, Al-Awadhi A. Singapore: Springer Singapore; 2022: 381–393.

  46. Gurl E. SWOT analysis: a theoretical review. J Int Social Res. 2017;10(1):994–1006.

    Article  Google Scholar 

  47. Clark D, Armstrong M, Allan A, Graham F, Carnon A, Isles C. Imminence of death among hospital inpatients: prevalent cohort study. Palliat Med. 2014;28(6):474–9.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Hojjat-Assari S, Rassouli M, Kaveh V, Heydari H. Explaining health care providers’ perceptions about the integration of palliative care with primary health care; a qualitative study. BMC Prim Care. 2022;23(1):226.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Gómez-Batiste X, Connor S, Luyirika E, Kumar S, Krakauer E. The technical advisory group (tag) supporting the who palliative care initiative. edn; 2017: 21–7.

  50. Khoshnazar TA, Rassouli M, Akbari ME, Lotfi-Kashani F, Momenzadeh S, Haghighat S, Sajjadi M. Structural challenges of providing Palliative Care for patients with breast Cancer. Indian J Palliat Care. 2016;22(4):459–66.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Fitzgerald J, Girón N, Bermudez JAZ. A practical guide for procurement planning and management of strategic public health supplies. In: A practical guide for procurement planning and management of strategic public health supplies. edn.; 2006: 67–67.

  52. Good PD, Cavenagh JD. What are the essential medications in palliative care? Pain 2006, 4(9):5.

  53. Latter S, Campling N, Birtwistle J, Richardson A, Bennett MI, Meads D, Blenkinsopp A, Breen L, Edwards Z, Sloan C. Patient and carer access to medicines at end of life: the ActMed mixed-methods study. Health Social Care Delivery Res. 2022;1(10):20–5.

    Google Scholar 

  54. Stjernswärd J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manag. 2007;33(5):486–93.

    Article  Google Scholar 

  55. DeVader TE, Jeanmonod R. The effect of education in hospice and palliative care on emergency medicine residents’ knowledge and referral patterns. J Palliat Med. 2012;15(5):510–5.

    Article  PubMed  Google Scholar 

  56. Butow P, Sharpe L. The impact of communication on adherence in pain management. Pain. 2013;154:S101–7.

    Article  PubMed  Google Scholar 

  57. Ryan K, Connolly M, Charnley K, Ainscough A, Crinion J, Hayden C, Keegan O, Larkin P, Lynch M, McEvoy D. Palliative Care Competence Framework: Health Service Executive (HSE); 2014.

  58. Horey D, Street AF, O’Connor M, Peters L, Lee SF. Training and supportive programs for palliative care volunteers in community settings. Cochrane Database Syst Reviews. 2015;2015(7):Cd009500.

    Google Scholar 

  59. Scott R, Goossensen A, Payne S, Pelttari L. What it means to be a palliative care volunteer in eight European countries: a qualitative analysis of accounts of volunteering. Scand J Caring Sci. 2021;35(1):170–7.

    Article  PubMed  Google Scholar 

  60. Woitha K, Hasselaar J, Van Beek K, Radbruch L, Jaspers B, Engels Y, Vissers K. Volunteers in palliative care–a comparison of seven European countries: a descriptive study. Pain Pract. 2015;15(6):572–9.

    Article  PubMed  Google Scholar 

  61. Effendy C, Kurianto E, Darmayanti ARI, Noviana U, Nurjannah I. Palliative care education to enhance informal caregivers’ skills in caring for patients with cancer: a scoping review. Open Access Macedonian J Med Sci. 2022;10(G):69–75.

    Article  Google Scholar 

  62. Kumar S. Community participation in palliative care: reflections from the ground. Progress Palliat Care. 2020;28(2):83–8.

    Article  Google Scholar 

  63. Rassouli M, Shirinabadi Farahani A, Khanali Mojen L. Palliative care perspectives and practices in the Islamic republic of Iran, and their implication on patients’ quality of life. Palliative Care: Perspectives, Practices and Impact on Quality of Life New York: Publisher In Press, Nova Scientific 2017;1(1):10–35.

  64. Toorang F, Zendehel K, Fadhil I, Chaar H, Qatamish N, Al Madhi S, Rashee H. Role of regional civil society organizations in cancer control in the Eastern Mediterranean Region. Cancer Control: East Mediterranean Region Special Rep Online Ed. 2022;10:95–102.

    Google Scholar 

  65. Higginson IJ, Hart S, Koffman J, Selman L, Harding R. Needs assessments in palliative care: an appraisal of definitions and approaches used. J Pain Symptom Manag. 2007;33(5):500–5.

    Article  Google Scholar 

  66. Eagar K, Cranny C, Fildes D. Evaluation and palliative care: a guide to the evaluation of palliative care services and programs. National Palliative Care Program Canberra; 2004.

  67. Evans L, Evans J, Pagliari C, Källander K. Scoping review: exploring the equity impact of current digital health design practices. Oxf Open Digit Health. 2023;1(1):oqad006.

    Article  Google Scholar 

  68. Bradford N, Armfield NR, Young J, Smith AC. The case for home based telehealth in pediatric palliative care: a systematic review. BMC Palliat care. 2013;12:1–13.

    Article  Google Scholar 

  69. Ostherr K, Killoran P, Shegog R, Bruera E. Death in the digital age: a systematic review of information and communication technologies in end-of-life care. J Palliat Med. 2016;19(4):408–20.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Harding R, Selman L, Powell RA, Namisango E, Downing J, Merriman A, Ali Z, Gikaara N, Gwyther L, Higginson I. Research into palliative care in sub-saharan Africa. Lancet Oncol. 2013;14(4):e183–8.

    Article  PubMed  Google Scholar 

  71. Ferrell BR, Virani R, Grant M. Improving end-of-life care education in home care. J Palliat Med. 1998;1(1):11–9.

    Article  CAS  PubMed  Google Scholar 

  72. Rassouli M, Khanali Mojen L, Shirinabadi Farahani A, Beiranvand S. The role of the nurse in the community in running the palliative care interdisciplinary team: the Iranian experience. Palliat Care Chronic Cancer Patients Community: Global Approaches Future Appl 2021:317–38.

  73. Davari M. Economic challenges of the Iranian health system. J Healthc Inf. 2012;8(7):915–8.

    Google Scholar 

  74. Nasiripour AA, Rezaei B, Yarmohammadian MH, Maleki MR. A comparative study of primary health care management in selected countries and designing a model for Iran. Iran J Nurs Midwifery Res. 2009;14(3):137–42.

    Google Scholar 

  75. Krakauer E, Al-Shammary SA, Duraisamy BP, Rassouli M, Rizkallah R, Fadhil S, Osman H. Palliative care models and innovations in 4 eastern Mediterranean Region countries: a case-based study. East Mediterr Health J. 2022;28(8):622–8.

    Article  Google Scholar 

  76. Hojjat-Assari S, Rassouli M, Madani M, Heydari H. Developing an integrated model of community-based palliative care into the primary health care (PHC) for terminally ill cancer patients in Iran. BMC Palliat Care. 2021;20(1):100.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Barasteh S, Rassouli M, Parandeh A, Vahedian-Azimi A, Zaboli R, Khaghanizadeh M. Palliative care in the health system of Iran: a review of the present status and the future challenges. Asian Pac J Cancer Prevention: APJCP. 2020;21(3):845.

    Article  Google Scholar 

  78. Brant JM, Fink RM, Thompson C, Li YH, Rassouli M, Majima T, Osuka T, Gafer N, Ayden A, Khader K. Global survey of the roles, satisfaction, and barriers of home health care nurses on the provision of palliative care. J Palliat Med. 2019;22(8):945–60.

    Article  PubMed  Google Scholar 

  79. Farahani AS, Rassouli M, Mojen LK, Ansari M, Ebadinejad Z, Tabatabaee A, Azin P, Pakseresht M, Nazari O. The feasibility of home palliative care for cancer patients: the perspective of Iranian nurses. Int J Cancer Manage. 2018;11(8):e80114.

    Google Scholar 

  80. Kalateh Sadati A. Home Health Care: the necessity in the Health policy of Iran. Elder Health J. 2019;5(1):3–4.

    Google Scholar 

Download references

Funding

No funding was received for this article.

Author information

Authors and Affiliations

Authors

Contributions

Study design: N.GH, N.G, I.J, MR, HA and L.M; Data collection and analysis: N.GH, N.G, I.J, MR, HA. Study supervision: N.GH, M.R and L.M. Manuscript writing: N.GH, N.G, I.J, MR, HA. Critical revisions for important intellectual content: N.GH, M.R and L.M. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Maryam Rassouli.

Ethics declarations

Human ethics and consent to participate declarations

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Declaration of AI use

During the preparation of this manuscript, we utilized Copilot (AI) to assist with grammatical editing and proofreading.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Gafer, N., Gebre, N., Jabeen, I. et al. A model for integrating palliative care into Eastern Mediterranean health systems with a primary care approach. BMC Palliat Care 23, 264 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-024-01590-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-024-01590-5

Keywords