How Cancer Supportive and Palliative Care is Developed: Comparing the Policy-Making Process in Three Countries from Three Continents

INTRODUCTION

In recent decades, the epidemiological trend has shifted to chronic and noncommunicable diseases, and the aging population as a result of increased life expectancy, great increase in the incidence of cancer and other chronic diseases, as well as urbanization and changes in lifestyle, all in all, have become challenges, and overcoming their complications and outcomes require taking new and innovative measures.[123] One of the most important challenges, which almost all health systems in the world are facing, is the increase in cancer incidence and burden.[4] Cancer is one of the most important causes of death all around the world, with about 14.1 million new cases and 8.2 million cancer deaths globally in 2018.[5] According to the World Health Organization (WHO), the incidence of cancer is expected to raise from 10 million in 2000 to 15 million in 2020, with about two-third of the increase occurring in developing countries[6] in addition to, Iran has faced many structural and procedural problems with the purchase of the best health interventions.[7]

In 2007, the WHO defined supportive and palliative care as a series of measures taken with the aim of improving the quality of life for patients and their families, in order to resolve challenges and problems caused by incurable and life-threatening illnesses, through pain relief or prevention, early diagnosis, complete assessment, and treatment of pain and other (psychological and physiological) problems.[8]

Studies show that while many high-income countries have developed and implemented national policies in order to provide supportive and palliative care,[910] and despite the high burden of this disease, many low-income and middle-income countries have developed no plans and policies for designing and the provision of supportive and palliative care at local and national levels yet.[11] Despite the importance of addressing this issue, few systematic studies have been published globally so far in the field of policy-making and analyzing the policies regarding these care services. Although this type of care has many benefits for patients, their families and also the health system, not enough attention has been paid to this issue. Therefore, it should be figured out how policy-making process works in this area.

Conceptual model

In the science of public policy-making, and subsequently, health policy-making, a variety of frameworks are usually implemented. One of the most famous frameworks used in public policy making is the heuristic stages model. This process refers to the method in which policies are initiated, developed, formulated, selected, implemented, and evaluated. The heuristic stages model is the most common approach to understanding the policy process.[12] With the aim of better understanding policy-making process, this study presents the results related to the process of policy-making in the field of cancer supportive and palliative care, based on heuristic stages model that includes four stages agenda setting, policy formulation, policy implementation, and policy evaluation. Figure 1 shows the heuristic stages model of the policy-making process.

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Figure 1

Heuristic stages model of the policy making process

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METHODOLOGY

This qualitative study is a part of 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 (EIU). This report has investigated palliative care status in 80 countries around the world, and classified the countries, using 20 quantitative and qualitative indicators through five categories including palliative and health-care environment, human resources, affordability of care, quality of care, and community engagement (EIU 2015). Accordingly, from each group, one country was selected according to its access to information and the availability of government services, in order to examine the pattern of palliative care services. The selected countries consisted of UK, Malaysia, and South Africa. The data were collected through reviewing scientific and administrative documents, WHO website and reports, government websites, and other authoritative websites. Searches were done through texts in English and the databases Science Direct, Scopus, and PubMed, in the period between 2000 and 2018. To investigate the policy process, heuristic stages model is implemented consisting of the four stages: agenda setting, policy formulation, policy implementation, and policy evaluation. Key health indicators in the field of the present study are investigated, which are presented in Table 1.

RESULTS

The findings of this study are based on the model used in four stages of the policy process, including agenda setting, policy formulation, policy implementation, and policy evaluation. Table 2 gives a brief overview of the categories of these processes in the three selected countries.

DISCUSSION

In the field of policy agenda setting, unlike UK, where on the one hand, the ground for hospice movement was provided by raising public awareness and support from the church, and on the other hand, the interest of statesmen and the insurance companies provided financial resources for these services both by the government and privately, in Malaysia, due to the cultural influence of the West, these services not only had not met public interest, but also were rejected because of publicly being known as luxury services. This issue speaks of the profound and influential effects underlying factors associated with a policy, such as social, cultural, economic, and political factors, may have on the adoption of policies on public health by policy-makers. In addition, Malaysia is a good example of the influence of physical and financial access on the public acceptance of care. In South Africa, too, health care is based on the UK model. However, in addition to cancer, South Africa has been facing the double burden of communicable diseases such as HIV. In fact, as a result of the care needs of these patients becoming a health challenge for the country, policy-makers are obliged to address this type of care inevitably.

In the field of formulating policies, almost simultaneously in the late 1980s and early 1990s, the formulation of policy documents has been considered by policy-makers. However, the issue of debate is who is responsible of such cares in these three countries, which indicates several differences; in the UK, the Ministry of Health, as the major care provider has fulfilled its dominant role in providing care. The UK government is also responsible for setting the main framework for formulation, planning, and implementation of these care services, as one of its main tasks, and has also ensured the proper geographical distribution of hospices, and official recognition of palliative medicine, and has determined the areas under coverage, in accordance with the situation. However in Malaysia, unlike the UK, the government sector has taken charge of these services with a delay, under the influence of activities of other sectors involved in the health sector, by holding a national conference and formulating official guidelines for public hospitals. In South Africa, the major policy-maker and formulator is the HPCA of South Africa, formed by a joint of 14 hospice centers. After the needs of hospitals being identified, the integrated community-based home care program has been approved as the executive arm of this association and in collaboration with other organizations and has become a basis for such policies.

In the field of policy implementation, in the UK, despite the strong role of public sector and centralized decision-making and policy-making, there is a widespread, and in some cases, higher participation of other sectors, including voluntary sectors, in providing and funding services. There is a tendency toward the assignment of service provision to charity and private sectors, in order to increase the service coverage in cooperation with the National Health Service, decentralize programs and policies, and provide equal access to care, through regional implementation and planning. In Malaysia, nongovernmental organizations are the main providers of care. The government sector provides limited services in small hospitals by 11 palliative care units and 49 care teams in accordance with the imparted guidelines, while the number of nongovernmental providers is increasing. Since South Africa has been struggling with the challenges of proper health-care management and new structuring of care provision, especially since the end of apartheid in 1994 and has faced various ups and downs, first of all, efforts have been done to increase the capacity and the strength of organizational systems and care provision structures, through a mentorship program, while focusing on hospices. Then, it is tried to integrate mentorship services through community-based home care, and finally, the National Health Council of the country has determined the main framework for these care services, in order to make revolutionary changes in health care, through palliative care. It seems that due to the high number of HIV patients in South Africa, the government is taking authority over palliative care and has taken measures to provide palliative care. To implement the relevant policies, the government has formed seven task forces with the responsibilities regarding the policy-making, funding, support, training, availability of medicines, vulnerable populations, and ethical issues and has sought to highlight its own role in supporting the present providers, as one of its policies in this area.

In the field of policy evaluation, in UK, there is strong and consistent government supervision in order to improve the quality of services. The necessary standards are set by the cancer quality improvement taskforce and are periodically evaluated and reported by the National Health Service and the Department of Health and Social Care. The considerable point is that these standards focus on the end-of-life care, which can also be attributed to the high elderly population in this country. In Malaysia, evaluation is affected by implementation, and nongovernmental sectors, especially the charity sector, are the pioneers in the evaluation of these care programs as well as funding and implementing them. They assess care services, based on the WHO framework and according to surveys. In fact, a charity institution plays the leading role in policy-making, education, and palliative services both for the public and private sectors, and everything depends on charity. Although in South Africa, due to the newness of these care services, policy evaluation has not reached the implementation phase yet, the service quality evaluation and the mentorship program are currently being carried out. In hospices, this occurs as a combination of internal accreditation by centers and external accreditation under the supervision of public sector, The COHSASA, which indicates the enforcement and the empowerment of government supervision.

CONCLUSION

Several factors are involved in how cancer palliative care policy is included in policy-makers' agenda. First, understanding a necessity as a result of an increase in the number of chronic patients in need of care; second, raising public awareness and acceptance as a result of sensing the physical and nonphysical care outcomes, such as physical and financial access; and third, attracting the attention of policy-makers and other providers of financial and nonfinancial resources, including the private and charity sectors.

In the formulation of policies, the main issue is the government's protective role, which in the UK includes all supportive duties, while in Malaysia and South Africa, the government only fulfills some of these tasks, with the nongovernmental sector sometimes taking over them.

In the field of policy implementation, it seems that there are three different methods of providing supportive and palliative care: government and nongovernment provision of care through collaborative policy-making and planning in the United Kingdom, potent nongovernment and limited government care provision with a feeble government policy-making in Malaysia, and nongovernment care provision through centralized and imperative government policy-making and planning in South Africa.

Finally, three types of evaluations are involved, proportional to the systems of care provision: a government and internal evaluation in the UK, a nongovernmental internal evaluation in Malaysia, and a combination of internal and external evaluations in South Africa.