What are family caregivers’ experiences of coordinating end-of-life care at home? A narrative review

Abstract

Objectives

People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success – coordination and family caregiver – are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.

Methods

Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.

Results

Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.

Significance of results

Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated “facilitator” or single point of contact for families, as well as the development of tailored communication strategies.

Introduction

In recent decades, there has been a notable shift in healthcare from the paternalistic approach toward emphasizing patient-centered care and respecting the autonomy and preferences of individuals facing the end of life (Taylor 2009). In the United Kingdom (UK), this is epitomized by the Ambitions for Palliative and End of Life Care national framework (National Partnership for Palliative and End of Life Care 2021). This sets out 6 ambitions for all those supporting a person, written in the voice of the dying person and placing them at the center of these statements. The ambitions also consider the support and well-being of family, recognizing the physical and emotional care they provide, with the intention of alleviating burden. Consequently, more individuals express their desire to receive end-of-life care in the comfort and familiarity of their homes, surrounded by loved ones (Grande et al. 2021). This preference has placed family caregivers at the forefront of the caregiving process, assuming roles that involve physical, emotional, and logistical support. Family caregivers often feel intense responsibility for the overall care of their loved one, which can impact upon the physical, emotional, and mental health of caregivers (Stajduhar et al. 2010).

Palliative care is a broad approach focusing on improving quality of life for an individual with serious, life-limiting illness; end-of-Life care focuses on care in the final phase of life. This care is geared toward managing symptoms, providing emotional support, and ensuring dignity for patients in their final days, often involving family members and caregivers. Both address the physical, emotional, and spiritual needs of the patient, aiming to enhance overall well-being, with end-of-life care attending more closely to preparing for death and supporting the dying process.

Research on family caregiving has identified themes that interlink coordination of care, the burdens felt, the barriers and challenges to providing care in the home setting and the potential support needs of caregivers. Penrod et al. (2012) explored the caregiving process and defines the basic social approach as “seeking normality,” as caregivers strive to establish reliable patterns of everyday life while fulfilling the demands of end-of-life care. The recognition of caregivers’ efforts in maintaining a sense of normalcy underscores the coordination role they play in ensuring a smooth transition during this challenging period while recognizing the heavy burden upon them as family caregivers (Bijnsdorp et al. 2022).

Family caregiving involves providing practical, emotional, or educational support to individuals of all ages with various health needs (Stall et al. 2019). Family caregivers, often close relatives or friends, play a crucial role in palliative care, which aims to enhance quality of life by managing symptoms and offering emotional support (Mulcahy Symmons et al. 2022; WHO 2020). Despite the fact that over 56 million people worldwide need palliative care annually, only 14% receive it due to barriers such as lack of integration into health systems and inadequate training and medication access (WHO 2020).

In the context of the UK, the demand for palliative care is rising with an aging population. By 2050, 1 in 4 people will be 65 or older (ONS 2019). Family caregivers account for 75% of home-based care being provided to people in the UK and, within end-of-life care this number can rise to 90% (Gardiner et al. 2020).

It is recognized that for many, home is the preferred place of death (Fereidouni et al. 2021; Woodman et al. 2016), while actual place of death can be changeable due to a number of factors (Ho et al. 2022). This can vary significantly across different cultures and societies, but in an umbrella review that encompassed studies from Europe, North America, Asia, Latin America, Oceania and Africa, Pinto et al. (2023) established that home is most preferred choice for place of death in all studies. Families can greatly influence place of death, with willingness to provide the care and family size being facilitating factors (Ho et al. 2022; Sayma et al. 2020). This invaluable unpaid workforce enables people to be palliated in their preferred place of care, which in many cases would otherwise be unachievable. The World Health Organization (2020) supports the concept that a wide range of services and professionals should facilitate delivery of palliative care, in support of patient and family. But the reality remains less assimilated.

Family caregivers often mediate between health and social care professionals, navigating complex care options, budgets, and payments, which can be stressful and financially burdensome (Gardiner et al. 2020). Studies, including those by Morris et al. (2015) and Mulcahy Symmons et al. (2022), highlight the importance and challenges of caregiving, emphasizing the need for more support and resources.

Coordination, in the context of end-of-life care at home, involves synchronizing medical, emotional, and logistical support to provide comprehensive, patient-centered care. This includes clear communication between care teams, timely access to resources, and involvement of relevant professionals alongside family members to meet the patient’s needs and preferences. Liberati et al. (2016) examine how professional boundaries can hinder effective collaboration, thus increasing the need for coordination in complex care settings, while Buchan et al. (2019) discuss how the proliferation of roles in the National Health Service (NHS)has introduced more complexity, necessitating greater coordination to manage patient care effectively. While the need for coordination in healthcare may vary depending on system fragmentation, professional remits, or a transactional rather than relational care approach, this review highlights the intrinsic requirement for coordination in end-of-life care in all settings. This need exists to greater or lesser degrees, regardless of external factors. In many cases, family caregivers step into the role of coordinating care to ensure consistency and continuity, even when external agencies are involved. They often act as the central point of communication and logistical management, facilitating interactions between multiple care providers to support the patient’s comprehensive needs.

Rabow et al. (2004) present the paradox that families are expected to undertake complex physical caring tasks with little or no training and coordinate all aspects of care. More recent research has shown that coordination is a complex intervention and to be effective should involve all in the caring partnership and be resourced adequately (Davidson et al. 2015). The NHS describes the care coordinator position as helping to navigate health and social care systems, connecting people with the right teams, skilled in needs assessment and an “effective intervention” (Health Improvement Scotland 2019; NHS 2023). This emphasizes the necessity, significance and complexity of the role.

The experience of coordinating end-of-life care for a loved one can be an overwhelming and emotionally challenging task for family caregivers (Zhu et al. 2023). This review therefore aims to explore this critical element of home-based palliation.

Aim

This review aimed to explore family caregiver experiences of coordinating end of life care in the home setting.

Methods

Search criteria

PICo (Population, phenomenon of Interest and Context) was utilized as a structured approach to framing the qualitative research question and to support the generation of keywords (Stern et al. 2014). The research question was

What are family caregivers’ (P) experiences of coordinating end of life care (I) in the home setting (Co)?

An initial search was conducted to establish whether this question had been addressed in previous systematic reviews and a crosscheck of the International Prospective Register of Systematic Review otherwise known as PROSPERO(National Institute for Health Research 2020) for currently unpublished reviews to prevent risk of duplication. A literature search was conducted using the “PICo” template to support the generation of relevant keywords (family caregiver experience, care coordination, end-of-life, palliative, home setting) and to provide structure for the search strategy and search terms: “Informal care* OR Family Care* OR Unpaid care* OR spous* OR relatives) AND Ti, ab (experience OR perspective*OR perception*OR ‘lived experience’ OR ‘personal experience’ AND Ti, ab (end of life* OR end of life care OR palliat* OR palliative care OR dying OR terminally ill) AND Ti, ab (coordinat*.” The key “PICo” themes were then used to identify appropriate synonyms, alternative spellings, and truncation. Five databases (CINAHL Plus, AMED, Medline, Cochrane Database of Systematic Reviews, and Joanna Briggs Institute for Systematic Reviews) were systematically searched from inception to 31 May 2023. Boolean operators were utilized to combine and refine the searches. The search details are available in Table 1.

Table 1. Search terms used for each database: Keywords were “family caregiver,” “experience,” “end of life” and “coordination” and synonyms

To increase the sensitivity of the search, additional manual search methods were employed, including search engine search via Google Scholar, and manual searches of reference lists from relevant articles (Boland et al. 2017).

The inclusion criteria sought studies that included adult carers or family caregivers over the age of 18 years caring for adult patients aged 18 years or over. Studies were included that explored the populations experience of coordinating care in the home setting. Study type included full text primary research available in English language, which included qualitative, mixed methods, case studies, and primary research in dissertations.

Studies were excluded that focused on child carers, child patients, or whether patients has an advanced terminal illness. Studies were also excluded that focused on the experience or perspectives other than those of family caregiver. Study context outside of the home setting as well as opinion pieces and published abstracts were also excluded.

The full inclusion and exclusion criteria are outlined in Table 2.

Table 2. Inclusion and exclusion criteria

Search outcomes and study selection

A PRISMA flow diagram in Fig. 1 shows a summary of the search results. A total of 780 records were identified through the database searches, with a further 31 from Google Scholar and citation searches. Following initial screening a total of 26 full texts from databases and registers and 31 from other methods were retrieved to be assessed for eligibility. During full text screening, 47 papers were identified as not meeting the eligibility criteria and removed. A total of 10 studies were included in the review. A reference manager was used to assist in the initial screening process for organizing references and removing duplicates. In a 2-stage approach, titles and then abstracts were screened, to establish relevance. Those selected were then reviewed as full text in conjunction with the criteria for inclusion and exclusion. This selection process and the resulting articles for review was discussed and agreed with a second reviewer, to enhance reliability, minimize selection bias and add robustness to results (Butler et al. 2016). Any discrepancies were discussed with a third reviewer.

Figure 1. PRISMA flow diagram (adapted from Page et al., 2021). The PRISMA diagram below demonstrates the results of searches and screening.

The potentially relevant studies were screened using the eligibility criteria, and then an iterative process ensued that involved revisiting the criteria and searching the content for “coordination.”

Quality appraisal

The final selection for this review were all qualitative studies, therefore the focus for appraisal tool was to ensure robust qualitative approaches.

The JBI Critical Appraisal Checklist for Qualitative Research was used to evaluate the quality of each study chosen for the systematic review and findings discussed with another reviewer (Lockwood et al. 2024). All studies demonstrated good methodological quality.

Data extraction

Data was collected in 2 steps, the first of which involved utilizing the JBI-QARI extraction tool (Aromataris and Munn 2020) to gather information from the chosen publications. The data were retrieved according to each study’s references, country of origin, methodology and data analysis, phenomena of interest, setting and participants, and author’s conclusions. See Table 3 for a description of the included studies.

Table 3. Extracted data of included studies

Synthesis

Data was thematically extracted, using manual open coding. A meta-aggregative approach was used for data synthesis by pooling the findings together and then grouping these into categories according to their meaning. Categories were then further paired into synthesized themes. As the studies selected were comparable and contain some defined themes, deductive integrative synthesis was considered the most appropriate and adopted for the review (Boland et al. 2017). Any discrepancies in the synthesis process were discussed with other members of the team. Manual coding enabled a reflective approach to the data, and reflexivity was maintained through critical reflection on assumptions and biases that may have been introduced.

Results

Characteristics of the studies

A total of 10 studies met the inclusion criteria, all were published between 2010 and 2023. The search resulted in studies from Africa, USA, Canada, England, Belgium, Switzerland, Sweden, and Norway. Most of these studies (n = 8) deployed a semi-structured interview approach to obtaining the data, also secondary analysis of semi-structured interviews (n = 1) and narrative interview (n = 1). Qualitative methodological approaches used included grounded theory, a phenomenological approach, a heuristic method, and social constructivist theory. Studies had between 11 and 61 caregiver participants, a number congruent with the methodology of the studies (Creswell and Creswell 2018). A total of 245 adult family caregivers reported experiences of coordinating end-of-life care, ages ranging from 19 to 82 years of age. Analyses of the data collected included inductive thematic analysis, interpretative phenomenological analysis, Heuristic interpretation, and Corbin and Strauss methodology.

Review findings

A total of 88 findings were located. These were further aggregated into 12 categories and then synthesized into 3 overall themes: (1) family caregiver identity (2) strategies for care, and (3) practicalities of care, as presented in Table 4.

Table 4. Synthesized findings

Family caregiver identity

Five categories were included in the first synthesized theme. “Terminology of role” demonstrated that caregivers self-identified as the coordinator (Hardy et al. 2014; Mohammed et al. 2018; Reeves et al. 2020; Vermorgen et al. 2021). Some caregivers felt they played an intermediary role in coordinating care (Fenton et al. 2023).

“Relationship with their relative and relative’s former role” incorporated supporting the relative’s emotional needs (Fenton et al. 2023; Totman et al. 2015). These findings included loss of the relative’s role and independence (Ojima Adejoh et al. 2021). Caregivers also addressed the change in their relationship (Skorpen Tarbegr et al. 2019).

“End-of-life care coordination is not optional; it is an extension of the relationship” included not being part of the decision (Linderholm and Friedrichsen 2010; Skorpen Tarbegr et al. 2019; Reeves et al. 2020; Ojima Adejoh et al. 2021). Also addressed is the moral imperative, articulated as feeling obligated or having spiritual repercussions if family did not provide care (Mohammed et al. 2020; Salifu et al. 2021). Some caregivers felt this was a reciprocity for care they had themselves been given (Salifu et al. 2021; Totman et al. 2015).

“Caregiver’s feelings of anxiety, isolation and loneliness when coordinating end-of-life care” related to the feeling of responsibility causing anxiety (Linderholm and Friedrichsen 2010; Salifu et al. 2021; Skorpen Tarbegr et al. 2019; Totman et al. 2015).

“Rewarding experience” highlighted that while many of the categories showed responsibility and burden for family caregivers, they also reported the positive aspects to this role or an opportunity to demonstrate better care than they themselves had previously received (Totman et al. 2015; Ojima Adejoh et al. 2021; Salifu et al. 2021).

Strategy for care

Four categories were identified in the second synthesized theme. “Approach and planning” identified that family caregivers developed their own strategies for coordinating the care for their relative. This included mapping out the services available to them and developing something new when previous strategies failed (Hardy et al. 2014). Obtaining information independently was another approach (Fenton et al. 2023; Reeves et al. 2020). Some caregivers described using a written system to strategize (Linderholm and Friedrichsen 2010; Vermorgen et al. 2021). Caregivers also strategized hospital admission to manage complex situations (Hardy et al. 2014; Salifu et al. 2021).

Responsibility for, and effectiveness in, “decision-making” was central to the coordination role for caregivers. This could include choices around the treatment (Fenton et al. 2023). Caregivers described the responsibility that came with this aspect of the role (Mohammed et al. 2018; Reeves et al. 2020).

Caregivers expressed their provision of “continuity” as part of the coordinating role (Mohammed et al. 2018; Reeves et al. 2020). There was recognition from the caregivers that continuity from the healthcare professionals would have enabled them to coordinate care more easily (Ojima Adejoh et al. 2021; Vermorgen et al. 2021).

“Communication and liaison” related to the caregiver’s responses around communicating with others involved in the care of their relative, and the relative themselves, plus other family. Caregivers discussed managing difficult communication with the healthcare teams, family or with their relative about dying and death (Fenton et al. 2023; Mohammed et al. 2018). When discussion about dying did happen, it was profoundly helpful for the caregiver (Mohammed et al. 2018). Communication and liaison were a heavy workload for caregivers (Hardy et al. 2014; Totman et al. 2015). This aspect of the role could also involve translation, of language or jargon, to support the coordination of care (Ojima Adejoh et al. 2021; Fenton et al. 2023).

Practicalities of care

Three categories were identified in the third synthesized theme. “Symptom and medicines management” indicated that caregivers found themselves being responsible for assessing symptoms and managing medications (Hardy et al. 2014; Reeves et al. 2020). This element of coordination could feed back into decision-making (Mohammed et al. 2018) or be a joint process between the patient and the caregiver (Ojima Adejoh et al. 2021). In some cases, caregivers reported the need to judge severity in relation to accessing further help (Ojima Adejoh et al. 2021). In resource-poor settings, access to pain medication could be limited, resulting in caregivers trying to manage poor symptom control and turning to alternative options (Salifu et al. 2021).

“Equipment management” was another area that caregivers found themselves coordinating (Fenton et al. 2023). In a resource-poor setting, the added complexity could include raising funds and managing without necessary items (Ojima Adejoh et al. 2021) and being unable to access necessary equipment was a cause of distress (Totman et al. 2015).

“Care appointments, services management and advocacy” was exhibited by, for instance, the caregivers attending the appointments with the relative (Reeves et al. 2020), or even on behalf of them (Ojima Adejoh et al. 2021). The caregiver may advocate for their relative in these situations (Fenton et al. 2023). Caregivers reported experiences of negotiating which healthcare professionals would be involved (Hardy et al. 2014), and there were repeated reports of general management of services (Mohammed et al. 2018; Salifu et al. 2021; Skorpen Tarbegr et al. 2019). Some of these interactions were difficult and gave a sense of embattlement to coordinating (Totman et al. 2015). One caregiver identified an action that could be taken to support them (Ojima Adejoh et al. 2021).

Discussion

The themes of this narrative review demonstrate the many facets of coordinating end-of-life care for family caregivers. Interestingly, none of the studies focused purely on this aspect of care provision. It therefore highlights that while the subject of coordinating care, especially in the end-of-life context, is a relevant and documented topic, there has not been a defined focus on the family caregiver’s responsibilities in this. The findings draw attention to the role of family caregiver as contextual and subjective to the person(s). This potential subjective response is reflected in other studies that explore family caregivers’ experiences, albeit not identifying coordination as a role. Carlander et al. (2011)illustrated the sense of main responsibility that this cohort feels for their relative, while Woodman et al. (2016) describe the feelings of obligation family caregivers to enable care in the home setting. The choice for place of care and death, while patient-centered, should involve the family caregiver. This choice should be open to reevaluation if the situation changes, due to the risks of placing such remit on that 1 caregiver (Fereidouni et al. 2021; Munck et al. 2008).

In the same connotation as people not identifying themselves as a carer at all (The National Institute for Health and Care Excellence 2020), the relationship with the relative was a “mixed blessing.” The sense of obligation and lack of choice was made clear in 8 out of the 10 studies, but alongside this the expression of close bond with the relative. It is unsurprising that healthcare professionals make assumptions of family willingness to provide home-based care when patients are non-curative and have limited treatments (Linderholm and Friedrichsen 2010; Mohammed et al. 2018).

Findings also suggest that inadequate preparation for signs and symptoms that may appear near death, caused distress impacting facilitating the coordination of care. Communication about the dying process helps the family caregivers be prepared for what is happening and what is to come (Robertson et al. 2022). Caregivers felt that healthcare professionals did not provide them with the information they required, and evidence supports the view that family caregivers’ informational needs are not being met (Woodman et al. 2016; Zhu et al. 2023).

Family caregivers adapt their strategies with a trial-and-error process to cultivate their own remedies and use experiential learning, especially when navigating services, a tactic corroborated in other studies (Michaels et al. 2021). Hospitalization is used as a further strategy when services are not felt to be meeting the relative’s needs in the home setting. This suggests that despite developed policy and palliative care provision, there remains a gap in the ideal delivery of support.

Communication was a key coordination activity and a challenge identified by caregivers. The impact of being compelled to repeatedly seek clarity from healthcare professionals and at times being excluded from discussions when it was felt that they were key to understanding their relative and circumstances (Martín et al. 2016). Exclusion bled into frustration and feeling discounted or even ignored during healthcare interactions with the relative (Linderholm and Friedrichsen 2010; Skorpen Tarbegr et al. 2019). Family caregivers having successful communication is essential to coordinating care and where this can be supported or improved demonstrates a more fulfilled role.

The findings highlighted how family care givers were responsible for providing practical care, including assessing and managing symptoms (Morris et al. 2015), which in the absence of professional help may result in emergency hospital admission. Morris et al. (2015) concluded correspondingly, discussing the multifaceted interchange between resources and family caregivers that impacts the perception of their experience.

It is further complicated in resource-poor settings where medication and equipment are not as readily prescribed and the weight of responsibility falling on them alone. The international implications of this narrative review highlight the universal challenges and variations in family caregiving for end-of-life care at home. Cultural, economic, and healthcare system differences across countries shape the resources and support available to caregivers. In low- and middle-income countries, caregivers often face limited access to professional healthcare services and palliative care, intensifying their burden. In contrast, high-income nations may offer more comprehensive healthcare infrastructure, yet disparities in caregiver support persist. Understanding these international contexts can inform global health policy, promoting equitable access to resources, training, and support for family caregivers worldwide, regardless of geographic or socioeconomic boundaries.

Limitations

To the best of the author’s knowledge, this is the first narrative review focusing exclusively on the family caregiver experience of the coordination role when a relative is receiving end-of-life care. The search strategy was limited to 5 databases, alongside reference searches and Google Scholar, which could have limited the number of studies included. Unintentional study exclusion could also have been exacerbated by the chosen search terms and Boolean operators, particularly because some of the concepts were nonspecific in terminology. For instance, “end-of-life” and synonyms – other terms could have been used by study authors, such as “Hospice.” Similarly, searching the term “coordination” within records could potentially have excluded papers that defined this activity in another way. It is also worth noting that using 3 elements, instead of 4 in the search strategy may have given a higher yield. Furthermore, the author is a nurse practitioner working within the area of palliative care and therefore well-placed to understand the concepts but at risk of introducing bias and preconceived beliefs and conclusions. Lastly, several of the studies used participants who were bereaved caregivers, and this can introduce recall bias in their reports.

However, the review methodology was systematic and comprehensive, with a meta-aggregative approach to synthesizing the findings. The reliability of the review is improved by this iterative process of identification and could be considered transferable.

Implications for research and practice

In future research, several areas warrant further exploration to enhance understanding of the challenges family caregivers face. For instance, the loss of relationship and independence, as highlighted in the theme family caregiver identity, should be examined more deeply to determine its emotional and psychological impact on caregivers. Furthermore, from the same theme, there is potential to explore how anxiety, loneliness, and isolation among caregivers can be mitigated through access to personal support services.

The concept of caregiver decision-making and empowerment should be explored further, particularly in relation to how education and training programs might provide support. Future research should also examine how these initiatives can be implemented and adapted on a global scale to address diverse caregiving needs across different cultures and healthcare systems.

Additionally, an investigation of cultural, religious, and spiritual obligations, which vary across countries, may help healthcare providers to understand how they shape caregiving experiences internationally.

Recommendations for policy makers are 2-fold: 1 is the need to address the obligation of family care provision. This can be achieved by subscribing to an enhanced communication agreement through a central care provider, such as a General Practitioner (GP)or specialist nurse, that safeguards the choices and discussions, so they are inclusive of the family caregiver in addition to the patient. The other component is reviewing the current status of family care provision, with aim to make it less burdensome and more rewarding. This should include ensuring there is a contingency plan for patients that wish to be cared for at home. The plan needs to include availability of social care domiciliary support that enables home-based care without a family caregiver present or, arguably more sustainable and satisfactory, enabling increased support for the family caregiver.

Conclusion

Coordinating end-of-life care involves numerous challenges for family caregivers, including feelings of duty and isolation, and communication issues. These difficulties are inherent in the role of being a primary caregiver. Care coordination becomes inevitable as caregivers are involved in tasks such as symptom assessment, liaising with healthcare professionals, and providing holistic support.

Evidence suggests that having a consistent professional contact, such as a palliative care facilitator, can help to distribute responsibilities and improve communication. This support would reduce caregivers’ anxiety, alleviate feelings of isolation, and potentially prevent unnecessary hospital admissions. Simplifying care through a key professional role or service should enhance the patient experience and improve outcomes for both caregivers and the healthcare system.

It should be stated that there is a need for more research on the unique challenges faced by family caregivers in coordinating end-of-life care for patients with life-limiting conditions, especially nonmalignant disease. However, it is unclear what this would add at this stage – the concerns and challenges faced by home-based palliative care are becoming apparent and this review of coordination experience adds to that body of evidence. Future studies should focus on the impact of facilitator roles and effective communication strategies, with potential international applicability.

Whilst some countries do not have the same degree of policy development, and certainly limited by reduced access to resources, they could also learn from and improve upon the attempts made by countries that have included palliative care on their health policy agenda for several years.