Palliative Care Policy Analysis in Iran: A Conceptual Model

INTRODUCTION

Cancer is the third leading cause of death in Iran,[1] and Cancer statistics indicate the registration of 90,000 new cases in the country every year.[2] Considering cancer patients’ need for specialized supportive care, pain management, and symptom control, one of the main requirements of the health systems of all countries is to provide palliative care services to cancer patients.[3] The World Health Organization (WHO) has recommended all countries to give priority to this type of care in their public health programs. The lack of access to these services in a community is synonymous with neglecting human rights.[4] This type of care is relatively new in Iran and is provided in a sporadic manner, and the number of service-providing centers is very low in proportion to the entire population.[5] Given the prioritization of palliative care services at various levels by the WHO, Iran's Ministry of Health has recently been designing a palliative care system by prioritizing national cancer control programs, establishing a palliative care workgroup, and using extensive resources and the views of experts.[6] Designing a plan for providing these services as part of the health system necessitates attention to the way people in need of these services can access them, the required workforce and funding, the role and position of health-care centers and personnel, the role of information technology, and the impact of social, ethical, and cultural issues.[7] Every country has different views on palliative care as part of its health system.[8] The first step for health-care policymaking, therefore, seems to be to explain the stakeholders’ perceptions in the context of the country's health-care system. At the same time, common principles hold in the programs, or at the very least, there are many common dimensions that influence policymaking, and the use of the existing models can play an important role in identifying these common dimensions.

METHODOLOGY

This qualitative research was conducted from August 2016 to February 2017 using the content analysis method. The participants included 22 stakeholders, including cancer patients, caregivers, health-care providers, experts, and policymakers, who were selected using purposive sampling. The patients included in the study had received a definitive diagnosis of cancer by a specialist and at least 6 months had passed since their diagnosis and were undergoing treatment or were in the follow-up stage of their treatment. The studied caregivers had been directly involved in taking care of a cancer patient for more than 6 months. The studied health-care providers included nurses, physicians, social workers, and psychologists, with more than 1 year of experience in working with cancer patients. Cancer experts and policymakers were also among the participants of this study. The present research was carried out at the oncology departments and clinics affiliated to Shahid Beheshti University of Medical Sciences as the main referral centers in the country. Data were collected through semi-structured in-depth interviews. The interviews were held at a quiet place preferably of participants’ choice with prior arrangements and continued until data saturation occurred.

The interviews were designed differently for the patients, care providers, and policymakers. Before beginning the interviews, the participants were asked to complete a demographic questionnaire and sign an informed consent form; permission to record their voices and take notes was also obtained from them and they were ensured of the confidentiality of their data and their anonymity in the publication of the results and also of their right to withdraw from the study at any stage they wished. The interviews began with a general open-ended question such as "Please talk about when you first learned about your disease. What training needs did you have then?" (question for the patients), "What were your training needs for providing care to the patients?" (question for the care providers), and "What are the training needs of a care system developed for patients?" (question for the policymakers). The interviews were recorded and then transcribed verbatim to ensure that participants’ entire words were preserved. The text of the interviews was first read to gain a comprehensive understanding of its content, and meaning units and initial codes were then determined.[13] The initial codes were categorized and analyzed based on the Walt and Gilson (1994) health policy analysis framework.[9] To ensure the reliability of this study, Guba and Lincoln's four criteria were used.[14] The ethics approval for the research was obtained from Shahid Beheshti University of Medical Sciences under the code IR. SBMU. RAM. REC.1395.70.

RESULTS

Twenty-two participants were interviewed in this study, including seven cancer patients, two caregivers, six health-care providers, and seven policymakers. A total of 546 codes were extracted from the analysis of the interviews. After removing the repeated codes and merging the similar codes based on the health policy analysis framework, the codes were categorized into four main categories, namely context, content, process, and actors, and 11 subcategories and 25 secondary categories were also formed [Table 1].

Table 1 Main categories, subcategories, and secondary categories

DISCUSSION

Palliative care is currently one of the challenges of the health system in Iran and its establishment as one of the goals of the health system requires the identification of its effective factors. This study was, therefore, conducted to analyze the factors affecting palliative care policymaking in Iran. The findings showed the impact of four categories, namely context (political, social, and structural feasibility), content (target setting), process (attracting stakeholder participation, the standardization of care, and education management), and actors (the Ministry of Health and Medical Education, health-care providers, and volunteers) in the analysis of the palliative care policies of Iran.

Regarding context, the support of responsible entities, such as the government's prioritization of health, the health infrastructures, and the presence of executive agencies in the country play an important role in the development of a care system. Based on success stories from other countries regarding the establishment of a palliative care system, national macro policies have played a key role in the systematic provision of care services,[15] and "the design of a palliative care package for cancer patients in Iran" has begun since 2011 in the National Cancer Committee with the support of the Cancer Department of the Ministry of Health and is still in progress.[16] In addition to the public attention to health services, the present study found that some people believe that this approach is merely associated with end-of-life services. Other studies have also discussed the improper perceptions of health-care workers[1718] and the misconceptions of patients and their families about palliative care.[19] Although public attitudes toward palliative and end-of-life care are complex and vague,[20] changing people's attitudes toward these services is one of the key factors underlying the achievement of palliative care goals.[21]

The growing culture of seeking specialist care in the field of health and people's referral to specialists before the diagnosis of the disease leads to the imposition of additional costs and the patient's confusion; in most parts of the world, GPs or clinical nurse specialists are the key providers of palliative care.[22] Overcoming this challenge, as stressed by the participants, can play a significant role in designing a proper care system by encouraging the participation of private and public institutions in raising public awareness about these services and their means of access and also by training GPs and nurses who can provide these services.[2324] Spirituality can therefore affect the quality of patient care by affecting the caregivers’ health.[25] Considering that 98% of Iranians are Muslim, spirituality is considered an essential component of people's life that is deeply rooted in the culture and history of the country;[26] it can be considered an underlying factor affecting the design of a palliative care system.

Regarding content, it is important to determine the executive policies of the service provision system. Countries that have been successful in providing palliative care have treated these services as part of their health system[27] and have integrated them with oncology care services,[28] while, according to the participants of the present study, no such thing is defined in the health system of Iran. A similar challenge posed is the classification of services. Theoretically, health services and referrals are presented at three levels in the health system of Iran; given this important infrastructure, these services have been designed in Iran in the form of the comprehensive national program for palliative and supportive cancer care at three levels, including the first-level care, which is provided in the community, health houses, and rural clinics. The most important pillar of the first-level palliative care is the referral system established which seeks to meet the patients’ needs at very little cost, and if necessary, refers them to higher levels of the service.[29] This scenario is the basis for providing services in successful health systems.[30]

Another major challenge in target setting is financing. Although after launching the health sector evolution plan, chemotherapy and radiotherapy have become free of charge for cancer patients if admitted to public hospitals, which is an almost unique advantage of the Iranian health-care system throughout the world,[31] there are no tariffs for other services such as home care and hospice. Designing service packages for different insured is a good financing policy that enables better access to health-care services. In some countries, such as Canada, the UK, and Italy, insurance tariffs have been defined by the private and public sectors and by charities, especially for providing home care and hospice services,[32] while there are still no home and hospice care centers in Iran.

According to the health policy analysis, process is concerned with people's performance and provision of services. The complexity of cancer and the various levels of services in palliative care mean that people's performance should be determined in different settings. The results indicate the lack of a defined job description for members of palliative care teams in Iran[17] and demonstrate the need for building a proper infrastructure.

Moreover, the limited palliative care services in Iran are often lacking in clinical guidelines and are only offered based on personal experience and knowledge. Some guidelines have been prepared and used locally in institutions. Examples include a guideline for spiritual services and pain protocol which significantly affects the patient's quality of life.[3334] Meanwhile, as reported by the Clinical Practice Guidelines for Quality Palliative Care (2013) in the US, the expansion and diversification of palliative care areas has led to the design and updating of guidelines and consequently the improvement of the quality of life, the continuity of care, and the standardized provision of services to the patients.[35]

The newly emerged palliative care system of Iran is faced with an inadequate training, awareness, and expertise among its health-care providers, especially nurses and physicians,[36] and the lack of public knowledge and awareness about the services offered through this system.[37] A reason for the inadequate training in this area is the lack of formal training in palliative care, which hinders the provision of these services. Developed countries have the experience of designing palliative care curricula, offering palliative care programs at the postgraduate level, and training both a general and an expert workforce.[32] In response to these needs, some measures have been taken in Iran, such as the design of an interdisciplinary curriculum for palliative care with the situation analysis and needs assessment of cancer patients; however, these measures may prove more effective if palliative care service points are also established.[38]

Actors play an important role in the design and implementation of policies. In Iran, the Ministry of Health and Medical Education is the top-level agency in charge of the health system and is responsible for planning and implementing health policies at the national level; part of this responsibility is delegated to medical science universities across the country. Considering that health-care services are classified into different levels in Iran, community-based health-care providers such as health workers (behvarz), midwives, GPs, and nurses can help in providing community-based palliative care. The interdisciplinary nature of palliative care with a team approach consisting of caregivers is a factor that contributes to the provision of services, cost reduction, and quality of life.[39] Continuous interdisciplinary education can help overcome the challenges in this area, such as the failures in teamwork, the ambiguities in the job description of health-care workers, and the lack of coordination between different sectors of the palliative care system. Attracting volunteer help to the palliative care system helps provide financial assistance to the patients and controls and coordinates the services provided by charitable entities and community volunteers and thus plays an important role in the development of a proper care system, since volunteers are one of the main funders of palliative care systems.[40]

Although the present study is one of the few studies that analyze palliative care system policies through the policy analysis framework, considering the extent of the issue and the fact that this study is qualitative and has been conducted on a small number of the stakeholders, the generalizability of the findings is low.

CONCLUSION

The growing number of cancer patients in Iran and the aging population, on the one hand, and the importance of health equity as a national policymaking goal, on the other hand, demonstrate the importance of designing a comprehensive care system more than ever. The success of a health system plan requires great attention to its aspects of social, political, and executive feasibility, the use of suitable scientific capacities, and consideration for the different actors involved. Making policies on this important issue with a comprehensive and holistic view of its components, including an emphasis on proper target setting, using methods of payment, regionalization and referral system in the health care system. In view of these findings, future studies are recommended to design a palliative care system for cancer patients and employ a pilot study to implement it as an operational model.