Nursing Manuscript
Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer
American Journal of Hospice & Palliative Medicine® 1-5 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114561856 ajhpm.sagepub.com
Maryam Rassouli, PhD1, and Moosa Sajjadi, PhD2
Abstract Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients’ quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. Keywords palliative care, end of life, supportive care, nursing, cancer, Iran
Introduction Ever since Cicely Saunders established the first academic hospice in 1967 in Britain, palliative care has turned into a discipline emphasizing interdisciplinary function. Despite being a recently developed discipline, it is rapidly expanding in most countries across the world,1 mainly because of the increased knowledge and awareness of care providers about pain and other physical symptoms and the mental, social, and spiritual tensions of the patients.2 An aging population, the emphasis on individual worth, and the improvement of standards in social welfare have led to the providing of palliative care services and the institutionalization of centers providing these services in numerous developed countries.3 Patients with cancer face problems in every aspect of their life, including the individual, family, and social domains, and therefore experience a reduced quality of life. In order to prevent the impact of the negative outcomes of the disease and to improve the patients’ quality of life, the need for palliative care as the main goal in providing treatment and care for patients with cancer is deeply felt.4 According to the World Health Organization (WHO), more than half of the countries in the world are making efforts to prevent cancer or to provide treatment and palliative care for patients with cancer. A recent assessment conducted by WHO (February 2013 summit on the occasion of World Cancer Day) indicates that, currently, many countries do not have a cancer control program consisting of prevention, early diagnosis, treatment, and care, and there is an urgent need for help directed at reducing cancer mortality rates, long-term treatment, and proper care in order to prevent human pain and suffering.5 Cancer is the third leading cause of death in Iran. More than 30 000 people die every year due to cancer.6 Given the
aging population of the country, increased life expectancy, technological advances, and the daily increase in environmental pollutants, the incidence of cancer is expected to double in the next 2 decades.7 The necessity for providing palliative and supportive care has recently been explained in the ‘‘Comprehensive National Program for Providing Palliative and Supportive Care for Cancer’’ from the 3 perspectives of human rights, satisfaction of the people, and reduced health care costs, and the conclusion has been drawn that through reducing unnecessary diagnostictreatment procedures and a better recognition of the needs of patients with incurable diseases, palliative care reduces health care expenses along with increasing patient satisfaction with the provided care, and it has also been emphasized that palliative care is an essential pillar of cancer control.8 Status quo of palliative care services provided to Iranian patients has a whole different story. In Iran, providing care for patients with incurable diseases, especially those with end-stage diseases, is the responsibility of family members. Although all hospitals admit these patients and provide their services to them, services specifically designed for these patients are very limited. These
1
Department of Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran 2 Department of Medical-Surgical Nursing, Faculty of Nursing and Midwifery, Gonabad University of Medical Sciences, Gonabad, Iran Corresponding Author: Moosa Sajjadi, PhD, Department of Medical-Surgical Nursing, Faculty of Nursing and Midwifery, Gonabad University of Medical Sciences, Beside Asian Road, Gonabad, Iran. Email: [email protected]
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American Journal of Hospice & Palliative Medicine®
2 patients can simply be admitted to hospitals to receive routine care and services provided to just any other patient.9 Given the growing incidence of cancer in Iran and the importance of improving the level of health and quality of life in these patients and their families, palliative care in patients with cancer has proved of fundamental importance; fortunately, in recent years, this issue has drawn the attention of relevant authorities. This study thus aims to investigate the status quo of palliative care in Iran and to introduce the actions taken in this respect and to present the barriers to palliative care and its outlook regarding patients with cancer in Iran.
Current Status of Palliative Care in Iran Contrary to the progression of the primary health care program in Iran, a developed program for providing specialist palliative care services does not exist yet as health care services do not provide specifically designed end-of-life palliative care to patients and their families. It can only be imagined that, in such a system, patients with cancer requiring palliative care do not have access to the facilities they need. Patients and their families undergo a lot of pressure in order to find a way to relieve their pain, and, in some cases, health care providers do not or cannot provide proper medication to the patient at the right time.3 There is little research conducted about patients’ end-of-life needs and the importance of a holistic care plan for them, such as one consisting of the control of physical symptoms and pain and paying attention to the mental, spiritual, and social needs of the patients. Although there is no clear framework for palliative care in patients with cancer, and relevant interventions are not actively present in the official training programs of health care providers, it appears that certain spiritual aspects of palliative care are present in the country’s health care system and are in fact implemented by the nurses. Yet, there is still a need for greater attention to the spiritual aspect of care.10 About 98% of Iranians are Muslims, and death is a major concept well addressed in Islam.11 In Iranian Islamic folklore, death is a time for reporting to God and being held accountable for one’s own deeds in this world, which has caused death and dying to be considered a frightening experience that people try to avoid.9 So, it is important to consider these issues in palliative care. Considering that the emotional and spiritual needs of patients increase in the end stages of the disease, which then leads to intense psychological reactions on their part, care providers try to support patients and their families spiritually and emotionally in order to adapt better to their situation.12 Most people turn to religious approaches as a way to improve patients’ mental health in the face of tensions caused by disease and possible death.13 This approach has also been highlighted in Iran’s Palliative Care Association that considers religious counseling an objective of palliative care intended to elevate the spirit of patients and their families.9 The public opinion in Iran emphasizes the preference for providing palliative care services for patients with cancer in their own homes; however, there is yet no research-based
evidence to suggest the preferences and inclinations of Iranian patients with cancer in relation to palliative care. In addition, establishing special palliative care service centers is recommended at the second and third stages of the national health care program in Iran.3 Currently, patients with cancer in Iran receive medical services such as courses for the diagnosis and treatment of the disease in public and private hospitals and day clinics. After each course of the therapy, the patients are discharged from the hospital. These patients often do not receive the necessary care and training such as nursing care, consultation with doctors, or other care items related to their social, mental, physical, or spiritual needs. In this respect, there are a number of charitable or community palliative care centers scattered across the country.6 Other than few centers, services related to palliative and supportive medicine are not provided across the country. In the palliative care program for cancer, attempts have been made to facilitate the establishment of palliative and supportive medical units across the country, particularly in a number of selected hospitals in Gilan, Golestan, Ardebil, and Zanjan provinces.14 In Iran, the most frequent reasons for administration of opioids to women are breast, colorectal, lung, and gastric cancers as well as primary and metastatic bone disease, while in men, the main reasons are gastric, lung, colorectal and prostate cancers, and primary and metastatic bone disease.15 Patients obtain their required opioids from the Addictive Drugs Office. The most common drugs prescribed for pain relief are, in respective order from highest to lowest, morphine injection, methadone injection and pills, opium pills, and codeine phosphate pills. Opioids lack sufficient variety in Iran, and the medical and administrative procedures for their prescription and supply are deficient for many doctors and unfamiliar for the vast majority of patients. The use of available prescription drugs is mostly based on the doctors’ own experiences and the patients’ needs rather than the standard instructions and guidelines for pain relief. Consequently, improper use is often observed in the form of abuse, high or low dosage use, improper means of administration, incorrect time sequencing, insufficient understanding of the medication and lack of experience with its adverse effects, failure to comply with multidrug interaction guidelines, and several other problems.15 Establishment of the Iranian Cancer Society was proposed to the Scientific Associations Commission of the Ministry of Health and Medical Education, and, once approved, the Multidisciplinary Scientific Society consisting of cancer specialists in fields such as radiotherapy, oncology, surgery, pathology, radiology, pediatric and adult hematology–oncology, and basic sciences began its work in 2003.5,8 Furthermore, the National Cancer Research Network also began its activities in September 2006 with the aim to enhance local cancer research and coordinate various studies, administrative and service departments of the country. The network’s range of activities includes all the research projects within the health system involving every scientific center in the country working in the field of cancer.16 One of the most valuable activities of the National Cancer Research Network in the field
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of palliative care is the ‘‘developing of palliative care service packages for cancer patients in Iran’’ project that is currently being run with the support of the Ministry of Health Cancer Office and with close collaboration of research centers and scientific associations member of the National Cancer Research Network. Compiling the Comprehensive National Program for Providing Palliative and Supportive Care for Cancer began with the letter of June 14, 2011, directed from the Health Deputy and Medical Deputy of the Ministry of Health to the Director of the Cancer Research Network. Given the necessity of providing palliative care, this center has begun certain research projects in this field, including ‘‘Design and development of an interdisciplinary educational curriculum for palliative care for cancer patients’’ and ‘‘Comparison of the performance of the Palliative Medicine Center of the Cancer Institute of Tehran University of Medical Sciences with the standards of selected Middle Eastern countries and presenting a model for Iran.’’17 Of all the members of a palliative care team, nurses are usually the first care providers who assess the patients and determine their condition, needs, and pain. In the nursing education curriculum for the Bachelor of Nursing, which is a 4-year course in Iran, no particular academic credit or clinical training is provided with regard to palliative care; however, patients related to death and dying are dealt with in other courses. In many countries, general practitioners (GPs) are the main authorities responsible for providing medical care, particularly palliative care, to patients. Yet, no official training regarding palliative care is offered in general medical education programs. Results of one study show that only 12% of GPs in Iran have relevant palliative care knowledge at excellent and very good levels, while more than half have poor knowledge or no information at all about the matter.6
Barriers to Palliative Care in Iran Several barriers to palliative care have been identified in Middle Eastern countries, including in adequate governmental support for providing palliative care within the health system, problems regarding restricted access to opioid drugs (opioidphobia) along with inadequate training in the use of these drugs,18 lack of proper training, and limited resources, in particular, financial resources.19 According to experts, there are some barriers in Iran to provide palliative care services that require further attention; for instance, the traditional attitude of the medical staff (toward the management of incurable diseases). No clear medical rules exist to support the staff when legal action is taken against them in face of unwillingness to provide unnecessary treatment to please the patient’s family or to meet their unrealistic expectations. Among the barriers that exist against promoting palliative care in the society, a significant one is the sociocultural differences particular to Iranian society that make physicians unable to tell the truth to their patients in several cases, thereby creating numerous ethical challenges for providing care for patients
in end-of-life stages of cancer. Among the major barriers and limitations against the communication of information is the request from the patient’s family not to disclose the diagnosis to the patient.20 Potential barriers to training employees are another challenge that cannot be easily overcome, despite the importance of holding ongoing training courses to improve the quality of care. Educating physicians might be possible through fellowship courses, medical conferences, and online education, but educating nurses is very difficult. Many nurses working in oncology departments have limitations for participating in educational programs held by sponsor institutions due to family issues or language barriers. Moreover, they are not fully equipped to use online educational tools in the workplace due to their massive workload or at home due to their lack of access to a computer and Internet.21 The structure of centers providing services to patients with cancer might also be a barrier. Most centers to which patients are admitted perform only treatment duties and are not suitably designed for palliative and supportive care.20 A major challenge in providing palliative care in the form of care services is the payment process and insurance coverage for the patients. If patients were to have a suitable insurance coverage and were to enjoy financial support from the government, they could take advantage of superior medical services and physicians would also be under less pressure.20
Future Prospects of Palliative Care in Iran In a 2006 ranking, Iran was classified in the second group of countries, meaning those building the capacity for palliative care,22 and was later promoted to group 3A in 2011 with a little advancement; however, it is expected that with the commencement some basic actions in palliative care in recent years, the status of palliative care in Iran make a significant progress in the years to come.23 It appears that, regarding the capacity building efforts, an awareness about the necessity of palliative care has been developed at least in those involved in the health care system; experts and interested parties are making an effort to create international relations with other organizations providing palliative care through holding and participating in international congresses. In the area of localized provisions, attempts have been made to attract the support of the government and the Ministry of Health and to design and conduct research projects related to the issue. Given the draft prepared for the ‘‘Comprehensive National Program for Providing Palliative and Supportive Care for Cancer’’ project, the status of palliative care in Iran seems to progress and develop when this project achieves success. Based on the current status of palliative care in Iran, some recommendations can help the development of palliative care for patients with cancer in Iran and accelerate and facilitate its establishment. These suggestions include changing the policymakers’ approach to palliative care and regarding it as a necessity, institutionalizing palliative care services in the
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American Journal of Hospice & Palliative Medicine®
4 society and referring patients in advanced stages of cancer to palliative care departments, adding courses about the philosophy and principles of palliative care to the curriculum of medical and nursing disciplines, conducting comprehensive studies on palliative care for cancer, compiling standard medical guidelines by the medical committee of major universities through the support of the Ministry of Health offering greater solidarity for providing palliative care, and pain control to patients. Recommendations offered by experts about the cancer control program in Iran include the finalization of the draft of the operational program for palliative medicine consisting of home care, training health specialists and giving them free access to sufficient amounts of morphine or analgesic drugs, training health care providers (such as physicians of all levels, nurses, and medical service assistants) for managing the patients at this stage of the disease (including pain relief, symptom control, and mental support), ensuring that the palliative care provided at home meets the minimum standards required, and reviewing palliative and supportive care guidelines written over 5 years ago.
Conclusion In the past few years, attention to palliative care has significantly increased in Iran through the efforts made by the National Cancer Research Network and its affiliated centers and through the support of the Ministry of Health. However, palliative care is only provided in a scattered form and in a few centers; as a result, many patients with cancer are deprived of proper palliative care. Given the increase in the number of activities and programs launched in Iran in order to develop palliative care (especially in the case of cancer), it seems that its development and progress is not that far away into the future; yet, there is still a long way to go before we reach the desired state—a state that requires our collective and multifaceted effort and support. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
References 1. Hui D, Parsons HA, Damani S, et al. Quantity, design, and scope of the palliative oncology literature. Oncologist. 2011;16(5): 694-703. 2. Sasahara T, Kizawa Y, Morita T, et al. Development of a standard for hospital-based palliative care consultation teams using a modified Delphi method. J Pain Symptom Manage. 2009;38(4): 496-504.
3. Asadi-Lari M, Madjd Z, Akbari M. The need for palliative care services in Iran; an introductory commentary. Iran J Cancer Prev. 2008;1(1):1-5. 4. Borimnejad L, Mardani Hamooleh M, Seyedfatemi N, Tahmasebi M. Human relationships in palliative care of cancer patient: lived experiences of Iranian nurses. Mater Sociomed. 2014;26(1): 35-38. 5. Rassouli M, Sajjadi M. Palliative care in the Islamic Republic of Iran. In: Silberman M, ed. Palliative Care to the Cancer Patient: The Middle East as a Model for Emerging Countries. New York: Nova; 2014. 6. Asadi-Lari M, Madjd Z, Afkari ME, Goushegir A, Baradaran HR. The concept of palliative care practice among Iranian General Practitioners. Iran J Cancer Prev. 2009;2:111-116. 7. Iran’s Cancer Registry System [in Persian]. Web site. http://www. ircancer.ir/Default.aspx?tabid¼95#. Published Summer, 2012. Accessed November 21, 2014. 8. Cancer Research Center. [in Persian]. Web site. http://crc.tums. ac.ir/Default.aspx?alias=crc.tums.ac.ir/palliative. Published September, 2012. Accessed November 21, 2014. 9. Abedi M. Palliative Care Within the Iranian Context: ReDefining Palliative Care, Deploying Spirituality as a Support Measure and Need for Cultural Sensitivity; 2012. Web site. http://wwwinter-disciplinarynet/wp-content/uploads/2012/02/ abedisppaperpdf. Published 2012. Accessed November 21, 2014. 10. Seyedfatemi N, Borimnejad L, Mardani Hamooleh M, Tahmasebi M. Iranian nurses’ perceptions of palliative care for patients with cancer pain. Int J Palliat Nurs. 2014;20(2):69-74. 11. Asadi-Lari M, Goushegir SA, Madjd Z, Latifi NA. Spiritual care at the end of life in the Islamic context, a systematic review. Iran J Cancer Prev. 2008;1(2):63-67. 12. Zamanzadeh V, Rassouli M, Abbaszadeh A, Nikanfar A, AlaviMajd H, Ghahramanian A. Factors influencing communication between the patients with cancer and their nurses in oncology wards. Indian J Palliat Care. 2014;20(1):12-20. 13. Heidarzadeh M, Rassouli M, Shahbolaghi FM, et al. Posttraumatic growth and its dimensions in patients with cancer. Middle East J Cancer. 2014;5(1):23-29. 14. Cancer Research Center. Development of a comprehensive national program for palliative and supportive cancer care project [in Persian]. Web site. http://crc.tums.ac.ir/Default.aspx? tabid¼550. Published September, 2012. Accessed November 21, 2014. 15. Mohagheghi MA, Sedighi Z. Pain control in cancer patients by opiate use. Tehran Univ Med J. 2003;61(2):95-102. 16. Cancer Research Center. Cancer Institute of Iran [in Persian]. Web site. http://crc.tums.ac.ir/?tabid¼112. Published September, 2012. Accessed November 21, 2014. 17. Cancer Research Center. Development of a comprehensive national program for palliative and supportive cancer care project [in Persian]. Web site. http://crc.tums.ac.ir/Default.aspx? tabid¼519. Published September, 2012. Accessed November 21, 2014. 18. Silbermann M. Opioids in middle eastern populations. Asian Pac J Cancer Prev. 2010;11(suppl 1):1-5.
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19. Bingley A, Clark D. A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC). J Pain Symptom Manage. 2009;37(3):287-296. 20. Mobasher M, Nakhaee N, Tahmasebi M, Zahedi F, Larijani B. Ethical issues in the end of life care for cancer patients in iran. Iran J Public Health. 2013;42(2):188-196. 21. Day SW, Segovia L, Viveros P, Alqudimat MR, Rivera GK. The Latin American center for pediatric oncology nursing education:
development, implementation, and accomplishments. Cancer Nurs. 2013;36(5):340-345. 22. Wright M, Wood J, Lynch T, Clark D. Mapping levels of palliative care development: a global view. J Pain Symptom Manage. 2008;35(5):469-485. 23. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage. 2013; 45(6):1094-1106.
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Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer
American Journal of Hospice & Palliative Medicine® 1-5 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114561856 ajhpm.sagepub.com
Maryam Rassouli, PhD1, and Moosa Sajjadi, PhD2
Abstract Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients’ quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. Keywords palliative care, end of life, supportive care, nursing, cancer, Iran
Introduction Ever since Cicely Saunders established the first academic hospice in 1967 in Britain, palliative care has turned into a discipline emphasizing interdisciplinary function. Despite being a recently developed discipline, it is rapidly expanding in most countries across the world,1 mainly because of the increased knowledge and awareness of care providers about pain and other physical symptoms and the mental, social, and spiritual tensions of the patients.2 An aging population, the emphasis on individual worth, and the improvement of standards in social welfare have led to the providing of palliative care services and the institutionalization of centers providing these services in numerous developed countries.3 Patients with cancer face problems in every aspect of their life, including the individual, family, and social domains, and therefore experience a reduced quality of life. In order to prevent the impact of the negative outcomes of the disease and to improve the patients’ quality of life, the need for palliative care as the main goal in providing treatment and care for patients with cancer is deeply felt.4 According to the World Health Organization (WHO), more than half of the countries in the world are making efforts to prevent cancer or to provide treatment and palliative care for patients with cancer. A recent assessment conducted by WHO (February 2013 summit on the occasion of World Cancer Day) indicates that, currently, many countries do not have a cancer control program consisting of prevention, early diagnosis, treatment, and care, and there is an urgent need for help directed at reducing cancer mortality rates, long-term treatment, and proper care in order to prevent human pain and suffering.5 Cancer is the third leading cause of death in Iran. More than 30 000 people die every year due to cancer.6 Given the
aging population of the country, increased life expectancy, technological advances, and the daily increase in environmental pollutants, the incidence of cancer is expected to double in the next 2 decades.7 The necessity for providing palliative and supportive care has recently been explained in the ‘‘Comprehensive National Program for Providing Palliative and Supportive Care for Cancer’’ from the 3 perspectives of human rights, satisfaction of the people, and reduced health care costs, and the conclusion has been drawn that through reducing unnecessary diagnostictreatment procedures and a better recognition of the needs of patients with incurable diseases, palliative care reduces health care expenses along with increasing patient satisfaction with the provided care, and it has also been emphasized that palliative care is an essential pillar of cancer control.8 Status quo of palliative care services provided to Iranian patients has a whole different story. In Iran, providing care for patients with incurable diseases, especially those with end-stage diseases, is the responsibility of family members. Although all hospitals admit these patients and provide their services to them, services specifically designed for these patients are very limited. These
1
Department of Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran 2 Department of Medical-Surgical Nursing, Faculty of Nursing and Midwifery, Gonabad University of Medical Sciences, Gonabad, Iran Corresponding Author: Moosa Sajjadi, PhD, Department of Medical-Surgical Nursing, Faculty of Nursing and Midwifery, Gonabad University of Medical Sciences, Beside Asian Road, Gonabad, Iran. Email: [email protected]
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American Journal of Hospice & Palliative Medicine®
2 patients can simply be admitted to hospitals to receive routine care and services provided to just any other patient.9 Given the growing incidence of cancer in Iran and the importance of improving the level of health and quality of life in these patients and their families, palliative care in patients with cancer has proved of fundamental importance; fortunately, in recent years, this issue has drawn the attention of relevant authorities. This study thus aims to investigate the status quo of palliative care in Iran and to introduce the actions taken in this respect and to present the barriers to palliative care and its outlook regarding patients with cancer in Iran.
Current Status of Palliative Care in Iran Contrary to the progression of the primary health care program in Iran, a developed program for providing specialist palliative care services does not exist yet as health care services do not provide specifically designed end-of-life palliative care to patients and their families. It can only be imagined that, in such a system, patients with cancer requiring palliative care do not have access to the facilities they need. Patients and their families undergo a lot of pressure in order to find a way to relieve their pain, and, in some cases, health care providers do not or cannot provide proper medication to the patient at the right time.3 There is little research conducted about patients’ end-of-life needs and the importance of a holistic care plan for them, such as one consisting of the control of physical symptoms and pain and paying attention to the mental, spiritual, and social needs of the patients. Although there is no clear framework for palliative care in patients with cancer, and relevant interventions are not actively present in the official training programs of health care providers, it appears that certain spiritual aspects of palliative care are present in the country’s health care system and are in fact implemented by the nurses. Yet, there is still a need for greater attention to the spiritual aspect of care.10 About 98% of Iranians are Muslims, and death is a major concept well addressed in Islam.11 In Iranian Islamic folklore, death is a time for reporting to God and being held accountable for one’s own deeds in this world, which has caused death and dying to be considered a frightening experience that people try to avoid.9 So, it is important to consider these issues in palliative care. Considering that the emotional and spiritual needs of patients increase in the end stages of the disease, which then leads to intense psychological reactions on their part, care providers try to support patients and their families spiritually and emotionally in order to adapt better to their situation.12 Most people turn to religious approaches as a way to improve patients’ mental health in the face of tensions caused by disease and possible death.13 This approach has also been highlighted in Iran’s Palliative Care Association that considers religious counseling an objective of palliative care intended to elevate the spirit of patients and their families.9 The public opinion in Iran emphasizes the preference for providing palliative care services for patients with cancer in their own homes; however, there is yet no research-based
evidence to suggest the preferences and inclinations of Iranian patients with cancer in relation to palliative care. In addition, establishing special palliative care service centers is recommended at the second and third stages of the national health care program in Iran.3 Currently, patients with cancer in Iran receive medical services such as courses for the diagnosis and treatment of the disease in public and private hospitals and day clinics. After each course of the therapy, the patients are discharged from the hospital. These patients often do not receive the necessary care and training such as nursing care, consultation with doctors, or other care items related to their social, mental, physical, or spiritual needs. In this respect, there are a number of charitable or community palliative care centers scattered across the country.6 Other than few centers, services related to palliative and supportive medicine are not provided across the country. In the palliative care program for cancer, attempts have been made to facilitate the establishment of palliative and supportive medical units across the country, particularly in a number of selected hospitals in Gilan, Golestan, Ardebil, and Zanjan provinces.14 In Iran, the most frequent reasons for administration of opioids to women are breast, colorectal, lung, and gastric cancers as well as primary and metastatic bone disease, while in men, the main reasons are gastric, lung, colorectal and prostate cancers, and primary and metastatic bone disease.15 Patients obtain their required opioids from the Addictive Drugs Office. The most common drugs prescribed for pain relief are, in respective order from highest to lowest, morphine injection, methadone injection and pills, opium pills, and codeine phosphate pills. Opioids lack sufficient variety in Iran, and the medical and administrative procedures for their prescription and supply are deficient for many doctors and unfamiliar for the vast majority of patients. The use of available prescription drugs is mostly based on the doctors’ own experiences and the patients’ needs rather than the standard instructions and guidelines for pain relief. Consequently, improper use is often observed in the form of abuse, high or low dosage use, improper means of administration, incorrect time sequencing, insufficient understanding of the medication and lack of experience with its adverse effects, failure to comply with multidrug interaction guidelines, and several other problems.15 Establishment of the Iranian Cancer Society was proposed to the Scientific Associations Commission of the Ministry of Health and Medical Education, and, once approved, the Multidisciplinary Scientific Society consisting of cancer specialists in fields such as radiotherapy, oncology, surgery, pathology, radiology, pediatric and adult hematology–oncology, and basic sciences began its work in 2003.5,8 Furthermore, the National Cancer Research Network also began its activities in September 2006 with the aim to enhance local cancer research and coordinate various studies, administrative and service departments of the country. The network’s range of activities includes all the research projects within the health system involving every scientific center in the country working in the field of cancer.16 One of the most valuable activities of the National Cancer Research Network in the field
Downloaded from ajh.sagepub.com at DALHOUSIE UNIV on May 17, 2015
Rassouli and Sajjadi
3
of palliative care is the ‘‘developing of palliative care service packages for cancer patients in Iran’’ project that is currently being run with the support of the Ministry of Health Cancer Office and with close collaboration of research centers and scientific associations member of the National Cancer Research Network. Compiling the Comprehensive National Program for Providing Palliative and Supportive Care for Cancer began with the letter of June 14, 2011, directed from the Health Deputy and Medical Deputy of the Ministry of Health to the Director of the Cancer Research Network. Given the necessity of providing palliative care, this center has begun certain research projects in this field, including ‘‘Design and development of an interdisciplinary educational curriculum for palliative care for cancer patients’’ and ‘‘Comparison of the performance of the Palliative Medicine Center of the Cancer Institute of Tehran University of Medical Sciences with the standards of selected Middle Eastern countries and presenting a model for Iran.’’17 Of all the members of a palliative care team, nurses are usually the first care providers who assess the patients and determine their condition, needs, and pain. In the nursing education curriculum for the Bachelor of Nursing, which is a 4-year course in Iran, no particular academic credit or clinical training is provided with regard to palliative care; however, patients related to death and dying are dealt with in other courses. In many countries, general practitioners (GPs) are the main authorities responsible for providing medical care, particularly palliative care, to patients. Yet, no official training regarding palliative care is offered in general medical education programs. Results of one study show that only 12% of GPs in Iran have relevant palliative care knowledge at excellent and very good levels, while more than half have poor knowledge or no information at all about the matter.6
Barriers to Palliative Care in Iran Several barriers to palliative care have been identified in Middle Eastern countries, including in adequate governmental support for providing palliative care within the health system, problems regarding restricted access to opioid drugs (opioidphobia) along with inadequate training in the use of these drugs,18 lack of proper training, and limited resources, in particular, financial resources.19 According to experts, there are some barriers in Iran to provide palliative care services that require further attention; for instance, the traditional attitude of the medical staff (toward the management of incurable diseases). No clear medical rules exist to support the staff when legal action is taken against them in face of unwillingness to provide unnecessary treatment to please the patient’s family or to meet their unrealistic expectations. Among the barriers that exist against promoting palliative care in the society, a significant one is the sociocultural differences particular to Iranian society that make physicians unable to tell the truth to their patients in several cases, thereby creating numerous ethical challenges for providing care for patients
in end-of-life stages of cancer. Among the major barriers and limitations against the communication of information is the request from the patient’s family not to disclose the diagnosis to the patient.20 Potential barriers to training employees are another challenge that cannot be easily overcome, despite the importance of holding ongoing training courses to improve the quality of care. Educating physicians might be possible through fellowship courses, medical conferences, and online education, but educating nurses is very difficult. Many nurses working in oncology departments have limitations for participating in educational programs held by sponsor institutions due to family issues or language barriers. Moreover, they are not fully equipped to use online educational tools in the workplace due to their massive workload or at home due to their lack of access to a computer and Internet.21 The structure of centers providing services to patients with cancer might also be a barrier. Most centers to which patients are admitted perform only treatment duties and are not suitably designed for palliative and supportive care.20 A major challenge in providing palliative care in the form of care services is the payment process and insurance coverage for the patients. If patients were to have a suitable insurance coverage and were to enjoy financial support from the government, they could take advantage of superior medical services and physicians would also be under less pressure.20
Future Prospects of Palliative Care in Iran In a 2006 ranking, Iran was classified in the second group of countries, meaning those building the capacity for palliative care,22 and was later promoted to group 3A in 2011 with a little advancement; however, it is expected that with the commencement some basic actions in palliative care in recent years, the status of palliative care in Iran make a significant progress in the years to come.23 It appears that, regarding the capacity building efforts, an awareness about the necessity of palliative care has been developed at least in those involved in the health care system; experts and interested parties are making an effort to create international relations with other organizations providing palliative care through holding and participating in international congresses. In the area of localized provisions, attempts have been made to attract the support of the government and the Ministry of Health and to design and conduct research projects related to the issue. Given the draft prepared for the ‘‘Comprehensive National Program for Providing Palliative and Supportive Care for Cancer’’ project, the status of palliative care in Iran seems to progress and develop when this project achieves success. Based on the current status of palliative care in Iran, some recommendations can help the development of palliative care for patients with cancer in Iran and accelerate and facilitate its establishment. These suggestions include changing the policymakers’ approach to palliative care and regarding it as a necessity, institutionalizing palliative care services in the
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American Journal of Hospice & Palliative Medicine®
4 society and referring patients in advanced stages of cancer to palliative care departments, adding courses about the philosophy and principles of palliative care to the curriculum of medical and nursing disciplines, conducting comprehensive studies on palliative care for cancer, compiling standard medical guidelines by the medical committee of major universities through the support of the Ministry of Health offering greater solidarity for providing palliative care, and pain control to patients. Recommendations offered by experts about the cancer control program in Iran include the finalization of the draft of the operational program for palliative medicine consisting of home care, training health specialists and giving them free access to sufficient amounts of morphine or analgesic drugs, training health care providers (such as physicians of all levels, nurses, and medical service assistants) for managing the patients at this stage of the disease (including pain relief, symptom control, and mental support), ensuring that the palliative care provided at home meets the minimum standards required, and reviewing palliative and supportive care guidelines written over 5 years ago.
Conclusion In the past few years, attention to palliative care has significantly increased in Iran through the efforts made by the National Cancer Research Network and its affiliated centers and through the support of the Ministry of Health. However, palliative care is only provided in a scattered form and in a few centers; as a result, many patients with cancer are deprived of proper palliative care. Given the increase in the number of activities and programs launched in Iran in order to develop palliative care (especially in the case of cancer), it seems that its development and progress is not that far away into the future; yet, there is still a long way to go before we reach the desired state—a state that requires our collective and multifaceted effort and support. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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