A Comparison of Policy Analysis of Palliative Care for Cancer in UK, Malaysia, and South Africa

One of the problems of health systems all around the world is the increase in cancer load and its incidence rate, which is a serious threat to people’s health (1, 2). Cancer is one of the major causes of mortality around the world (2-4). According to the World Health Organization (WHO), the cancer incidence rate is expected to increases 10 to 15 million new cases from 2000 to 2020 (1, 2). More than 90% of patients with fatal diseases including cancer have the dream of a peaceful death in an environment similar to their home. However, even in developed countries, only 20% to 30% of patients die at home, and according to Higginson et al., it is estimated that by 2030, this amount will decrease to 10% (5). Many patients with cancer are admitted to hospitals to receive specialty care, and after receiving specialized and costly care, pass away without obtaining the desirable results, after experiencing a lot of pain. But, unfortunately, for most patients with cancer, death is inevitable in many cases despite applying advanced therapies and modern technologies for treating these diseases. Therefore, today, the main approach to taking care of these patients is to provide supportive and palliative care (6).

Palliative care has rapidly expanded in the United Kingdom (UK) since the late 1960s (7). In May 2005, the World Health Assembly mandated that all countries design and implement national cancer control programs. Accordingly, cancer support and palliative care are considered one of the 6 principles of cancer control programs in every country (8). The WHO recommended to all countries to prioritize these care services in their public health programs (9). Moreover, this organization believes that countries should have appropriate policies and a systematic framework for implementing these services in their health systems based on the available resources (10). According to the estimations made by the WHO, about 80% of those in need of care need only primary and non-specialized care, and only 20% of them need specialized care (11).

Palliative and supportive care are provided with regard to the specific condition of the patient, increasing QOL in dying patients with a comprehensive, patient-oriented, multidimensional, and humanistic approach, a concept that has mostly been ignored in providing health services (12, 13). The results of a study in 2007 showed that patients, who were provided with care at supportive and palliative care centers, lived 29 days longer than other similar patients (14). On the other hand, researchers also pointed out that supportive and palliative care can reduce the cost of treatment and health care (15-17). While many high-income countries have developed and implemented national policies to provide cancer supportive and palliative care (18-20), many middle and lower-income countries still have no policy and plan at local and national levels despite the high burden of the disease (21). In 2004, the first international resolution was issued in the field of palliative care (WHA 67.19) (22).

The member states of the WHO demanded evidence-based tools to integrate palliative care into national health systems. For this purpose, the WHO’s practical guideline was developed. This guideline explains how to plan and implement palliative care services at the national or international level through a step-by-step approach for low and middle-income countries. The chapters of this guideline include stewardship/policy actions, workforce, health care financing, service delivery, information and research, and access to medicines (22). In all countries, the care delivery approach is an important issue, and policymakers and health care decision-makers are trying to provide the highest quality care as one of the basic priorities of each country’s health system, depending on the available resources (23). The provision of these services requires integrating and merging these services with the existing infrastructure of the health system, as well as considering the financial and human resources in the service delivery structure (24).

Many studies show that palliative care policies and the integration of these services in each country’s health system can bring about benefits such as reducing undesired hospitalization, improving the quality of life (QOL), increasing the rate of survival, and reducing the economic burden of cancer on the shoulders of the patients’ families and the health system (25-28). Despite many international recommendations around providing palliative care services from the very beginning of the disease and the integration of these services with the health system of each country, there are still many obstacles to achieve this important goal (29). Although the integration of palliative care in the early stages of cancer is routinely a part of the standard procedure in many countries such as Britain, in many developing countries such as Iran, palliative care services are in the early stages and their referral systems are very different from the ones in western countries (27, 30). In Iran, palliative care is a new concept, and there is no codified policy to provide such specialized services according to the demands, and there are only a few centers providing these services (31).

Palliative care is provided sporadically and is not efficiently protected by the health system, and the patients usually do not receive the necessary care. The existence of organized care programs and the integration of these services into the health system of the country are considered unmet needs (32). Since the application of an appropriate model in each care system depends on the health status and with regard to the economic situation, as well as the cultural and social status of the country, it is not possible to mention a set of fixed and pre-arranged goals for palliative care systems in the world (31). Therefore, the best choice can be made based on successful global experiences, studying the needs, considering the specific conditions of the country and, consequently, the policies of the health system of the society. Health policymakers play a significant role in the realization of this important goal (33). This study was conducted with the aim of comparing the policies and the strategies related to cancer supportive and palliative care in the selected countries, using the WHO practical guideline in order to assess the advantages, weaknesses, and limitations of these plans.

1.1. Conceptual Framework

The present study is based on the conceptual framework of “The World Health Organization Guide” with the approach of integrating palliative care in the health system (2014). This guide includes 6 policy orientations (development planning strategies), health system funding (development costs), service providers (hospitals, home care, etc.), human resources development (training programs), access to medicines (the rules and the access to medicines, especially opiates), and finally, information and research (evaluating information systems, multidisciplinary studies). At the stage of integration into the health system, each orientation has been classified into basic, moderate, and advanced levels (22). Palliative care program development has been subjected to many changes internationally; it is correlated with Human Development Index levels. Without policy support for palliative care and funding mechanisms, the development will be limited to what has been achieved by the pioneers’ devotion to building hospices and palliative care service centers in their communities (34). The public health model for palliative care development is shown in Figure 1.

Figure 1.

Public health model for palliative care development, (WHO, 2014)

This study is a comparative study carried out to analyze the policies of cancer supportive and palliative care in various countries around the world. The studied countries were purposefully selected based on the reports of the economist intelligence unit, which studies the status of palliative care in 80 countries around the world, and classified as the countries by taking into account 20 quantitative and qualitative indicators in 5 classes, including healthcare and palliative care environment, care affordability, human resources, care quality, and society engagement. Accordingly, based on the availability of information and the existence of government services for examining the pattern of palliative care services, the selected countries are as follow: the UK from the group 4b with an approach to integrating services; Malaysia from the group 4a with generalized palliative care provision in some areas of the country; and South Africa from the group 4a with isolated palliative care provision in some areas. On the other hand, each of the studied countries is located in one of the 6 regions of the WHO. The UK is considered a developed and advanced country, Malaysia as a developing and pioneer country in Asia, and South Africa as a developing and pioneer country in Africa.

The data were collected through reviewing scientific and administrative documents, WHO website and reports, government websites (UK, Malaysia, and South-Africa), and other authoritative websites. The search was done through texts in English and the databases, including Science Direct, Scopus, and PubMed between 2000 and December 2018. In order to review the content of the policies and the strategies related to cancer supportive and palliative care, the WHO guideline is used, which is based on the integration of palliative care into the health system and includes stewardship/policy actions, workforce, health care financing, service delivery, information and research, and access to medicines (22) compared in the selected countries. The contents of the documents are analyzed based on the 5 chapters of this guideline, which are presented in Table 1.

After reviewing the content of palliative care in the selected countries, the data were extracted. First, the same data were removed and, then, the themes were identified and grouped according to the WHO framework. To ensure the validity and reliability of the data, 5 people were approved for their palliative care. Two authors (MA and SV) independently searched and selected the relevant documents. Policy document content was reviewed by 3 authors (SV, HR, and MA). Disagreement concerning the content of documents was resolved through discussion. Additionally, the key health indicators were investigated in the field related to the study as shown in Table 2. We used a strategy search according to Medical Subject Headings terms. In this study, the following keywords were used: (“cancer” OR “cancer patients:) AND (“palliative care” OR “supportive care”) AND (“policies” OR “programs” OR “strategies”) AND (“UK” OR “Malaysia” OR “South Africa”). The data were analyzed by content analysis approach, using MAXQDA software version 11. After reviewing the content of palliative care in the selected countries, the data were extracted. First, the same data were removed and, then, the themes were identified and grouped according to the WHO framework. To ensure the validity and reliability of the data, 5 experts were approved for their palliative care.

This article compares the policies and the strategies for cancer supportive and palliative care in the UK, Malaysia, and South Africa. According to a report by the British Parliamentary and Health Service (2015), the causes of failure in palliative care provision in the UK were as follow: Weak symptom control, weak planning, communication, not addressing the needs of dying patients, insufficient out-of-hour services, ill-timed diagnoses, and treatment referrals (60).

National policies play an important role in spreading access to palliative care (22). One of the factors that distinguish the policies of different countries in supportive and palliative care provision is the existence and efficiency of a state strategy for national palliative care (55). In the UK, there is a comprehensive strategy for the enhancement and development of national palliative care. The vision and targets are clarified, and an action plan is defined along with powerful mechanisms in order to achieve these targets. Besides, the strategies are clearly determined by the central government and are regularly assessed and updated, and local governments should follow them. In fact, the policy implementation process has is up-down (36, 50). However, in Malaysia and South Africa, despite the fact that there is a governmental strategy and a broad vision of the development and promotion of national palliative care, the general and the specific goals are not defined and there are limited mechanisms to achieve goals (46, 56). In these countries, unlike the UK, the local states are not obliged to follow national strategies. In other words, these strategies are only prescriptive in nature (36, 61). In these countries, the Ministry of Health is responsible for the stewardship and the policy actions of palliative care, and regional departments are responsible for implementing these policies (50, 62). One of the advantages of South Africa is its major role in global issues and a palliative care statement during the African Union Summit in 2013 issued by the Minister of Health (36). In 2016, a palliative care policy framework was also approved. The UK owns the highest quality of death as a result of inclusive national policies, the broad integration of palliative care into national healthcare services, and the powerful hospice movement. It also has the highest score for care quality. Generally, income level is a good indicator of palliative care accessibility and quality: rich countries such as the UK are placed high in the ranking of palliative care (55).

One of the success factors in achieving palliative care goals is the deployment of professional and specialized personnel (36). There are adequate professional palliative care experts in the UK, which are approved by national professional boards. Volunteers must also attend a training course. The UK is the first country, in which palliative care has emerged (51). It also has the best children palliative care services (63). As in the UK, there is professional palliative care staff in Malaysia and South Africa. However, there is a shortage of doctors, nurses, and other support staff (49, 64). Unlike the UK, in this country, specialized palliative care education does not generally need to be approved by national professional boards (36). Although South Africa is not among the top countries in the human resources ranking (ranked 59th), it is, in many cases, a leading force in training and educating the workforce. The first MSc degree in the field of palliative care was presented at the University of Cape Town, South Africa (65). Another advantage of the palliative care plan in this country is the education of family physicians with the aim of integrating palliative care into the healthcare system. Among the successful programs in the UK, which other countries can adopt, lunching the National End-of-Life Care Intelligence Network in April 2013 and developing Background Electronic Palliative Care Coordination Systems within the palliative care system can be mentioned (66).

In order to increase access to palliative care, government funding is essential. In some countries, despite the fact that government funding is allocated to this type of care, either it is difficult to access it or it is poorly monitored (22, 36). In many countries, including the UK, providing palliative care is possible through charity (55). In the UK, government subsidies or public programs exist for individuals to increase the accessibility to palliative care. There are clear qualification criteria and simple procedures for using funds. There are instructions for accessing these funds. The effectiveness of this plan is examined on a regular basis (36). In Malaysia and South Africa, as in the UK, there are government subsidies or appropriate plans for people, who have access to palliative care (36, 48). Qualification criteria are also clear, but unlike the UK, access to budgets and programs is difficult and the effectiveness of programs is not monitored. Subsidies are needed for palliative care services in order to make the treatments more affordable. These aids are provided in the form of national insurances, pension programs, and charity funds, the same as in the UK (55).

A large number of patients die every year in hospitals globally, but many of them spend their final days at home or in hospices (22). England is one of the countries that is making changes in order to increase the quality of care received by patients and help reduce the costs of the National Health Service in the country (67). While countries need to take efforts for increasing palliative care accessibility and make the services affordable, the quality of care should also be taken into account. It should be ensured that painkillers, such as opioids, are easily available and managed properly (22, 36). Opioid painkillers are freely available in the UK. However, in South Africa and Malaysia, these drugs are always available or can be accessed only through specific laws, bureaucratic procedures, and prejudices (36, 62). South Africa has better access to medications than many African countries do (65). One of the South African national policies for palliative care (2017 - 2022) is the correct and stable access to appropriate medicines and related supplies to provide palliative care (68).

When the end-of-life comes, community engagement becomes important. When communities, volunteers, and families accept more responsibility, emergency admissions and hospital costs will be decreased. For policymakers, the question is how to increase motivations and develop support systems for further encouraging the community. In today’s world, people find it hard to discuss topics around death. So, it is of importance that social groups increase public awareness of palliative care. Another advantage of palliative care in the UK is that it has the second place in terms of public awareness on this field, of which people have a strong perception. Information on palliative care can easily be found through public portals and communities (69). But, in Malaysia and South Africa, people have an average perception and knowledge about palliative care. Besides, the information available in this regard on public portals and communities is not broad (36, 48, 49). The palliative care resolution issued by the World Health Assembly has created a strong motive for all countries to formulate palliative care policies, and in most countries, there is a big deal of effort made to ensure that all citizens access palliative care. However, in many developing countries there is still little or even no access to palliative care (19).

In Iran, due to the high rates of cancer-related mortality and the high cost of treating this disease (70), the health system requires to design of a purposeful program that will prioritize providing palliative care services to patients with cancer. By examining and analyzing palliative care policies in countries like the UK, Malaysia, and South Africa, all of which are pioneers in developing palliative care services and selected from 3 different continents, lessons can be learned from the challenges, weak points, and strengths of their policies and plans. They can be used as models for countries like Iran, which is at the beginning of its path. Although different models and policies have been presented for the provision of palliative care services in patients with cancer, in integration with the health system in different countries, selecting and implementing them requires attention and considering the specific conditions of each society and, consequently, the policies of the health system in that country and, ultimately, informed decision-making by health-care policymakers.

The present study had limitations, some of which can be mentioned here. It was not possible to access to all the data of the target countries. Some programs may be inaccessible or confidential; nevertheless, the authors of this study tried to review all the documents. The diversity of health structures and documents in the selected countries has led to lots of differences in the implementation of various programs, posing challenges in decision making around choosing the best policies.