Abstract
Lack of access to palliative care services in developing countries would add to patients’ suffering if deprived of palliative care services. There is a tremendous need for the basic, intermediate, and specialist training of palliative care, and the need will be growing as the population ages. Palliative care integration with the prevention, early diagnosis, and treatment of life-limiting health problems can enhance the quality of life, promote patients’ dignity, and positively affect the disease’s course. Primary palliative care can be applied at all healthcare system levels, including primary care providers and specialists in many disciplines who do not have formal palliative care training. Primary palliative care can assist to relieve the pain and suffering of terminally ill patients and can partially meet current or future needs in developing countries. Education is one of the main points of the primary palliative care program. It should be adapted to the development of palliative care for each country and eventually incorporated into the conventional training for all professionals. This cost-effective and simple approach has been a basis for creating an online educational program that aims to develop primary palliative care content material in Farsi for general practitioners who deal with patients with cancer.
Keywords
- Primary palliative care
- Specialty palliative care
- Cancer
- Terminally ill
- General practitioners
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Background and Significance
Palliative care is considered one of the pillars of cancer control and plays an essential role in managing cancer complications and treatment. Per the World Health Organization (WHO), palliative care is defined as a series of measures to improve the quality of life of patients and their families and to solve problems associated with the incurable life-threatening illness through the prevention or relief of suffering employing an early diagnosis and the assessment and treatment of pain and other psychological, physical, and spiritual problems (World Health Organization (WHO) 2021). Palliative care and pain relief are considered essential elements of universal health coverage (UHC).
Primary Palliative Care Versus Subspecialty Palliative Care
Palliative care can be offered by palliative care specialists who work alongside the patients’ primary care physician and is known as subspecialty palliative care, which is now recognized as a medical subspecialty in many countries. The specialty of palliative care is mostly available in high-income countries but is generally quite limited in the middle- and low-income countries (Poudel et al. 2019). Alternatively, clinicians who are not palliative care specialists can offer palliative care for seriously ill patients and provide basic palliative care. These palliative care services are called primary or basic palliative care. They may include basic pain management, basic management of other physical symptoms, basic use of adjuvant pain relievers, basic care coordination, and seriously ill patients’ routine care. Primary palliative care can foster clinician-patient relationships, reduce care fragmentation, alleviate pain and suffering, and provide empathic care (Quill and Abernethy 2013). However, primary care physicians require basic palliative care competencies and skills to provide disease management and symptom palliation (Bowman and Meier 2018).
Palliative Care in Iran: Past, Present, and Future
Iran, with a population of 82.8 million, among which 70% are aged 15–64 and 6% are aged 65 or older, is located in Western Asia (Fig. 1) (World Bank 2021a, b, c, d; Plecher 2021). Cancer is the third leading cause of death in Iran, and given the increasing life expectancy, the WHO estimated a cancer mortality of 62,000 in the year 2020. Currently, 300,000 cancer patients live, and 109,000 individuals have added to this number annually (Keyghobadi et al. 2015). The northern part of the country is a known area with a high incidence of gastric and esophageal cancer (Ghasemi et al. 2020).
Demographics and status of palliative care services and training in Iran (World Bank 2021a; World Bank 2021b; World Bank 2021c; World Bank 2021d; United Nations Development Program (UNDP) 2019; Osman et al. 2017). (Persiannfin.com. Persian in Finland. (2022). Retrieved from http://persianfinn.com/persian-speaking-in-finland/)
The history of palliative care in Iran dates back to the 1920s, when the first hospice for leprosy patients was established (Mojen 2017). However, modern palliative care for cancer dates back to the year 2000, when trained palliative care experts collaborated with the Royal Hospital for Women in Australia and led a series of workshops and trained specialists in palliative medicine with the Sydney Institute of Palliative Medicine (Mojen 2017). Counseling services for palliative care were established in the Cancer Research Center in Tehran in 2006 and other provincial services in different provinces in the subsequent years (Mojen 2017). These services offer subspecialized palliative care at the tertiary level to the public (Fig. 1). Several charity organizations also provide palliative care to both patients and their families and are mostly run by volunteers (Mojen 2017).
Integrating palliative subspecialty training into clinical practice was established through a palliative medicine fellowship program in 2012 and is up and running as of now. One to two palliative care specialists graduate each year (Fig. 1).
Medical universities are increasingly adopting a palliative medicine curriculum for the medical residents, and palliative care subjects also became a required component of any oncology conference in the country. However, palliative care services do not follow a systematic structure, and primary palliative care in Iran is in its infancy. The lack of an organized system to provide palliative care services is partly due to a shortage of trained primary care providers such as general practitioners and nurses who are the backbone of a well-established public health network.
With the increased number of the elderly population, providing palliative care for other age-related diseases such as advanced heart failure, advanced pulmonary disease, and dementia is an ongoing challenge for the public health system. Shortages of pediatrics primary palliative care services and partial coverage of these services by insurance companies make the issue even more complicated.
Primary Palliative Care Educational Project
The development of the evidence-based, culturally sensitive primary palliative care content material in Farsi (the language spoken in Iran and some other Central Asian countries) for general practitioners is the main objective of an ongoing educational pilot project. Knowledge obtained from the training in the advanced oncology program at the University of Ulm, Germany, in addition to collaboration with the Center for Palliative Medicine at the University Hospital of Cologne, Germany, is the principal motive behind an initiative to create an online educational platform in Farsi for 30 primary care providers.
The educational content would be provided for the volunteer physicians working in cancer care and includes palliative care subject matter. This pilot study’s educational contents are being verified by subject matter experts addressing the current challenges in primary palliative care. These educational subjects include the physical, psychological, social, and spiritual sources of pain and suffering experienced by patients and their families. Modules on pain and symptom management, interdisciplinary teamwork and collaboration among disciplines, communication skills, special needs of patients at various stages of the life cycle, bereavement, practices toward the end of life, and ethical and legal subjects will be soon made available to the general practitioners. The educational materials will be updated continuously on an online platform, and a certificate of attendance will be offered to the participants. This pilot project could eventually be extended as a model for establishing an educational platform of primary palliative care for other Farsi-speaking populations worldwide.
This project distinguishes itself through the following characteristics:
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Specific: It is a pilot study to design a culturally sensitive educational content material in palliative care for volunteer general practitioners in Farsi.
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Measurable: A posttest-only assessment of acquired knowledge would be performed through an online medium.
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Attainable: The content would be adapted from the international evidence-based practices and guidelines. However, based on local expertise and knowledge, it will highlight the role of cultural competence.
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Relevant: The content material would be used for continuous medical education in primary palliative care in Farsi.
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Time: This one-year pilot project was planned to be started in 2019, but due to an unforeseen severe COVID-19 pandemic, it was postponed, continuing in 2022.
Challenges
Besides the COVID-19 pandemic’s logistic limitations, this project anticipates further challenges such as the inability to secure funding and reliance on volunteerism, bureaucratic procedures, and the existence of competing palliative and pain management subspecialty programs, which do not share the same concept as the primary palliative care. The lack of confidence in completing the participants’ educational tasks and the time pressure are additional hindering factors to be considered (Barclay et al. 2019).
Conclusion
Although significant steps have been taken toward comprehensive palliative care in Farsi speaking countries such as Iran, there is a big gap between the status quo and the optimal state. Palliative care for patients with cancer is a significant challenge faced by the patients, their families, and healthcare providers. Given the increased life expectancy and aging of the population, cancer incidence is expected to double over the next two decades. The increased mortality and morbidity rates for patients with cancer, proven efficacy, and better clinical outcomes demand comprehensive palliative care services. Improving the health and quality of life in these patients and their families makes primary palliative care necessary.
The prospect of the primary palliative care in Farsi speaking countries relies on education and training for the primary care providers, developing a standard of the care service package and an independent discipline of primary palliative and supportive care. The establishment of evidence-based, culturally sensitive primary palliative care educational material in Farsi can address shortages of the trained workforce in primary palliative care. Research in palliative care to provide a regional palliative care model based on domestic resources and availabilities is pivotal for optimal survivorship and palliative care. As part of the curriculum for medical, nursing, and other relevant disciplines, primary palliative care training and creating an international link for training and research to develop palliative care services are among other venues to pursue.
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Acknowledgments
We thank Doctor Uta Schmidt-Straßburger, a scientific director of the Advanced Oncology Program at Ulm University, Germany, for her continuous support; the University of Ulm, Germany, for fostering continuous postgraduate learning in oncology; Doctor Irina Filip, an assistant professor of Clinical Psychiatry at Western University of Medical Sciences, Pomona, USA and Doctor Mamak Tahmasebi, an attending physician and palliative care specialist, Tehran, Iran, for their meaningful comments; and the European Palliative Care Academy and the Ruth and Adolf Merckle Foundation and DAAD (German Academic Exchange Service), Germany, for their generous educational support.
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Radfar, A. (2022). Integrating Palliative Care into Primary Care: An Educational Project to Meet an Unmet Need. In: Schmidt-Straßburger, U. (eds) Improving Oncology Worldwide. Sustainable Development Goals Series. Springer, Cham. https://doi.org/10.1007/978-3-030-96053-7_15
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