Abstract
Abstract
Background:
By starting to understand Muslim culture, we can seek common ground with Islamic culture within the American experience and bridge opportunities for better palliative and hospice care here and in Middle Eastern countries. The United States, Canada, and Europe are education hubs for Middle Eastern students, creating an opportunity for the palliative and hospice care philosophy to gain access by proxy to populations of terminally ill patients who can benefit from end-of-life care.
Objective:
The aim was to assess the state of research and knowledge about palliative and hospice care within the context of Muslim culture and religion.
Results:
Within the guide of the key search terms, we learned that at a glance, over 100 articles meet the search criteria, but after a closer inspection, only a portion actually contributed knowledge to the literature. This confirmed the need for research in this vein. More importantly, we posit that once the layers of culture, religion, norms, and nationality are removed, human beings share a kinship based on family, spirituality, death and dying, and fear of pain. This is evident when we compare the Middle Eastern end-of-life experience with the western end-of-life care.
Conclusions:
A true opportunity to make a lasting impact at the patient level exists for palliative and hospice care researchers if we seek to understand, gain knowledge, and respect Muslim culture and Islamic issues at the end of life.
Introduction
T
This article reviews the relevant literature, describes the influence that Islamic culture and religion have on end-of-life care, and highlights the need of framing the human experience in the form of culture as inclusive rather than as a barrier to developing hospice and palliative care programs in the Islamic world.
Search Methods
Literature reviewed for this article was identified through an online search using “OneSearch” tool, which searches 200 databases, including Academic Search Complete, SAGE Premier 2014, CINAHL Plus, ClinicalKey Flex, Academic Search Complete, ScienceDirect Freedom Collection 2015, BioMedCentral Open Access, PubMed Central, and Cambridge Journals Online. The Medical Subject Headings (MeSH) used as search terms were Islam, palliative care, hospice care, pain management, and clinical medicine. Only articles that included all the search terms concurrently in their text were included in the review. Articles that did not include all the searched terms simultaneously were excluded from the review. The references of the retrieved articles were also examined for studies that fit the inclusion criteria, and those relevant articles were also included in this review.
Focused searches of individual journals were conducted, including, but not limited to, the following: Palliative Medicine, The Lancet, Palliative and Supportive Care, International Nursing Review, American Journal of Hospice & Palliative Medicine, Journal of Pain and Symptom Management, and Lancet Oncology. Studies that contained the search terms, but did not elaborate on the topics at hand were excluded, as they did not make substantive contributions to the advancement of knowledge. The articles in the review include quantitative, qualitative, and clinical studies.
The framework for this article is based on the recognition of the major forces shaping research in this subject, including Muslim culture, the role of Islam in everyday life, cultural and religious barriers to the use of analgesics, and the 2015 World Health Organization (WHO) definition of palliative care. The major forces mentioned above were the guiding themes applied in synthesizing the knowledge found in the articles that met the MeSH search criteria. We believe the future of hospice and palliative care in the Middle East depends on increasing the availability, access, and dissemination of information about hospice care. For example, past successes of the medical profession and palliative care in Middle Eastern countries 2 tell us that enlisting the support of the Ulama or Council of Senior Scholars can successfully endorse the hospice philosophy within the Islamic context.
The western concept of a “good death” does not have the same meaning in Muslim communities as death is anchored in the Qur'an, Allah, and faith. 3 For example, in the case of using analgesics in palliative and hospice care, based on the Qur'an, it can be said that “[t]he Prophet said, if a large amount of anything causes intoxication, a small amount of it is prohibited,” 4 which speaks to the barriers the use of narcotic analgesics face. On the other hand, there is a Qur'an-based saying that, “Necessity has its (own) rules,” 5 which is interpreted by Muslim families as a gateway to bridging religion and social issues like healthcare treatment and in this case, palliative and hospice care.
The barriers currently faced by hospice and palliative care in Middle Eastern countries, in part, differ from the western experience, but not from what we can consider a universal philosophy of hospice care. According to the WHO (2015), Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. 6 In sum, we use the WHO definition of palliative care and our understanding of Muslim culture and the religion of Islam to frame this research and bridge religion and the human condition of death and dying.
Results
Out of 105 articles identified in the literature searches, (see Fig. 1) 25 met the inclusion criteria: Borhani et al., 12 Iranmanesh et al., 16 Rassouli and Sajjadi, 17 Harford and Aljawi, 8 Huijer and Abboud, 18 Brown et al., 19 Hendriks et al., 23 Doumit et al., 13 Dehghan et al., 9 de Graaff et al., 20 Bushnaq, 21 Bülow et al., 25 Doumit et al., 14 Tanjani et al., 10 Sachedina, 7 Daher et al., 11 Gatrad and Sheikh, 15 Al-Shahri, 22 Isbister, 2 and al-Bukhari. 26 From these, three themes emerged that have implications for palliative and hospice care in the context of Islam (see Table 1). The themes are as follows: the use and availability of opioids, dying as a Muslim patient, and cultural competence in death and dying (see Table 2).

PRISMA diagram for mesh terms.
The regulation of analgesics and the limited availability of palliative care professionals
Muslim society accepts that death only occurs with God's permission. The foundation of end-of-life care is rooted not in self-determination, but on principles from the Qur'an about family and community, spirituality and pain, pain as the link to God, pain reaffirms belonging and returning to God, pain expiates ones sins, 7 and that “Shari'ah does not recognize the right to die voluntarily as life belongs to God”. 7
For example, Muslim-majority countries of the Arab Gulf (Bahrain, Oman, Qatar, Kuwait, Saudi Arabia, and the United Arab Emirates) use very low amounts of opioid analgesics, 8 supporting the cultural and religious premise that there is no direct correlation between analgesic use and the health resources or wealth. The nonlinear relationship between wealth/health resources and analgesic use prompted a study of opioid consumption in 49 of the world's Muslim-majority countries as a point of access to begin the understanding of access to palliative care. 8 In 2013, there were ∼1.6 billion Muslims living around the world and equating to roughly 25% of the population. The number of Muslims is projected to increase to 2.2 billion by the year 2030. The sample in the study included about 75% of Muslims living in 49 Muslim-majority countries.
“The barriers to the rational use of opioid analgesics are varied, depending upon location, but certain barriers are common.” 8 For oral morphine, barriers include strict analgesic laws and regulations, concern for addiction, underdeveloped healthcare systems, and lack of palliative care information within healthcare. “[T]he linkage of suffering and atonement is not unique to Islam, but is also a belief held by some Christians.” 8
A study of Muslims and palliative care in Bangladesh 9 reports that the 1982 National Drug Policy prohibits the combination of analgesics for the exception of paracetamol and caffeine, while “codeine phosphate is not allowed due to fear of addiction.” Also, the policy regulates the manufacture and distribution of opioids. There are only four pharmaceutical companies that can import raw opioid materials and manufacture opioids, and 10 pharmacies, most in the capital city of Dhaka, are permitted to dispense morphine.
“[P]alliative care is in its infancy in Bangladesh, with few providers, all located in Dhaka.” 4 In 2010, there was a single private children's hospice and two palliative adult care services, one in Bangabandhu Sheikh Mujib University Hospital and one in the National Institute of Cancer Research and Hospital. To understand palliative and hospice care in the Bangladeshi context, 9 a study explored the story of cancer illness and later followed up with closed survey questions “to identify cancer-related symptoms and their management, as well as the experience in regard to opioids”. 9
Limited access, pain as the most distressing symptom, pain being the main reason to access palliative care, hard to obtain a morphine prescription, unreliable supply of morphine, subtherapeutic dosage due to shortage, and a sense of being under suspicion by dispensers were among the findings. Also, there was an underuse of the allocated opioids by the International Narcotics Control Board for the 150 million Bangladeshis. 9
In the evaluation of palliative care in Iran, 10 the treatment of pain is used as the main driver. The authors concluded that Iran lacked the facilities to provide palliative care, and a pain control committee regulated the treatment of pain. It did “not constitute a medical department, but rather works as a research department”. 10 In addition, it was learned that 1-mL bulb of 10-mg morphine sulfate was the limit; obtaining morphine was difficult due to strict legal regulation and dispensing procedures, the requirement of paperwork was a “labyrinth”, 10 and the permitted use was only for one month. Further needs for morphine, as it is often in the intensification of pain, required repeating the whole process over and over again. 10
In the case of Lebanon, 11 the approach to palliative care is traced to a seminal workshop by the Education for Physicians on End of life and their overseas fellowships. Upon their return, fellows reported on the state of palliative care in Lebanon. Their reports stated that a lack of available morphine, laws that restricted morphine prescriptions to a maximum of a two-week supply, a prescription requiring two signatures from licensed oncologists or pain management physicians, a pathology report confirming a cancer diagnosis, nonexistent referral system, reimbursement at 20–25% of an oncology consultation, and “indifference to patients' pain and suffering by healthcare providers” 11 were the main barriers to palliate care.
The essence of Islam at the end of life
From a study of intensive care nurses from three intensive care units at teaching hospitals affiliated to Kerman University of Medical Science in Iran, 12 four major categories emerged: commitment to care, awareness of dying patients, caring relationships, and dealing with barriers and ethical issues. Important to note is that “commitment to care” 12 was dominant and present in all responses. Following are the reported barriers encountered by nurses. Relatives had “unrealistically high expectations” of medical care and often contradicted themselves by demanding continuation and discontinuation of treatment. 12
The dying process was often prolonged by the belief in miracles not only by the family but also by the patients. The nursing personnel reported the difficulty in performing their clinical duties within the restrictions of Islam. The researchers characterized the intersection of Islam, Muslim culture, and end-of-life care nursing as a “spiritual milieu” 12 for the dying.
In a study of Lebanese women living with breast cancer, 13 the analysis uncovered fear of pain, fear of disease reoccurrence, and the fear of being pitied. The respondents stated, “[t]he most important thing is to be free of pain. And I keep on saying, GOD kill me, but do not let me feel the pain. I cannot tolerate the pain.” Pity was a complex issue as it “made them continue their life normally as much as possible to prove to self and others that they are capable of fighting and going on,” but it was also a burden as “it prevented them from living their status of patients or discussing their feelings with others in order not to be pitied”. 13
In the case of Lebanese oncology patients under palliative care, 14 categories from the data included the following: loss of control, threat of pity on self perception, worried about the family, hospitals equated to being trapped in time, place, and disease, and dislike of being nonproductive. 14 The categories were rooted in the Lebanese use of the word “YA HARAM”, 14 poor person, which patients reported as countering their sense of control, self-determination, and self-worth. In its implications for clinical practice, recommendations included that it is “vital to encourage cancer patients' participation through proper communication to have their care preferences used as a basis of care” and “[t]he initiation of an open communication with patients is essential for proper assessment of patients' dislikes regarding the hospital stay”. 14
When “[f]ocused on discussing bad news and customs when death is close for practicing Muslims of South Asian origin that is, India, Pakistan, and Bangladesh”, 15 any diagnosis, even for diabetes and/or cardiovascular disease, must be first given to a relative and not the patient. This study uncovered important insights for non-Muslims about death and dying. For example, dying must not occur in the hospitals as it interferes with the tradition of visiting the sick, praying while visiting, and mutual forgiveness. Prayer is a pivotal pillar of dying as a Muslim as “[i]t is believed that saying prayers and reciting the Holy Qur'an better alleviates pain and brings peace in a home rather than an institutional environment”. 15 For Muslims visiting the sick, a Sunnah, is a practice set by the prophet Muhammad and a requirement of Islam, but as the natural loosening of the extended family structure in Muslim societies occurs in South Asian countries, the needs for palliative care will likely arise. 15 In turn, the Sunnah provides prayers for the visitor's well-being by thousands of angels until he/she visits again later in the day.
Cultural awareness of the universal philosophy of palliative and hospice care
A translated version of the palliative care quiz for nursing was used to assess the palliative competence of ICU and oncology nurses in southeast Iran. 16 Participants (78%) 16 stated palliative care education was absent from their training, which makes sense, as Iran's health system does not support palliative care units in southeast Iran. The care for patients, regardless if they are receiving palliative or routine nursing, occurs side by side in ICUs or oncology wards. This side by side nursing care for the living and the dying means that “there is much information and many issues about patients that nurses need to know, and, consequently, they are not able to focus on the care of those who need specific palliative care”. 16
A participant stated that in Iran, “specialist palliative care services does not exist”. 17 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 healthcare providers, it appears that certain spiritual aspects of palliative care are present in the country's healthcare system and are in fact implemented by the nurses. 17
In the case of Iran, the recommendations included the following: redirecting the policy process in the case of palliative care, driving change by impressing the needs of palliative patients, subsequently institutionalizing palliative care services, developing a referral system, having the medical and nursing curriculum require courses about the philosophy and principles of palliative care, and having the Ministry of Health support the establishment of comprehensive studies, standard medical university guidelines and fostering “solidarity for providing palliative care, and pain control to patients”. 12 Progress has been made by the efforts of the National Cancer Research Network, its affiliates, and the Ministry of Health, but work remains to be done. 17
An assessment of the quality of life among breast cancer patients in Lebanon 18 used four existing instruments to design the questionnaire, including the European Organization for Research and treatment of Cancer-Quality of Life Questionnaire, Memorial Symptom Assessment Scale, and Barthel Index. Participants (97.8%) 18 were recruited from outpatient same day treatment/chemotherapy clinics. Pain and nausea were the symptoms most treated, but many other symptoms were rarely treated in this sample, especially psychological symptoms like sadness, worry, or self-esteem. 18 This is an example of “treating physical symptoms in Lebanon and not the psychological”. 18 This study sets the baseline for “quality of life, symptom prevalence and management, and functional ability of Lebanese women diagnosed with breast cancer”. 18
Qatar has a National Health Strategy committed to the treatment of cancer. In 2006, the strategy included a commitment of 2.8% of the country's gross domestic product to health research, 19 making Qatar the nation with the highest government-funded research program in the world. In 2012, 20% of deaths were cancer related. The Qatar National Cancer Strategy is rooted in best practices for cancer care taken from leading cancer centers across the world.
The national strategy recommends that treatment should be patient centered, psychosocial, include palliative, and require constant performance measurement and comparison to international standards. 19 In Qatar, breast cancer was the number one cancer diagnosis in women. Other predominant forms of cancer in the population included colon, lung, and prostate cancer. The incidence is not expected to slow down and “[t]he number of new cases diagnosed is anticipated to increase by roughly 60% by 2020”. 19
Following are the findings of a study focused on the personal views of “very ill” Turkish or Moroccan descendants with cancer, their family members, and their Dutch health providers: 20 the main theme of the data supports “[d]ying with a clear mind at the time appointed by God,” which relates to the Islamic requirement that dying patients “must be clear headed enough to take leave of his loved ones and to forgive them” and that, a clear mind, free of opioids and sedation, is needed to answer for oneself when meeting Allah. 15 For Turkish and Moroccans, good healthcare include “curative treatment till the last moment, maximum care, keeping hope alive, attention and respectful treatment, avoiding shameful situations, and dying with a clear mind without treatment that might shorten life”. 20
In the case of Jordan, 21 researchers concluded that palliative care approaches developed in Europe and the United States can be integrated into traditional Arab culture. At King Hussein Cancer Center in Jordan, the training and materials are from the United States, including the San Diego Hospice, and the Institute for Palliative Medicine. Other than Qatar, the approach in Jordan has successfully bridged palliative care needs and Islamic customs, traditions, and faith. 21
In an assessment of the Saudi health profession, 22 a study revealed that the influence and practice of rural and Saudi traditional medicine are evident despite considerable government investment in modernizing the health system. For example, “[t]he modalities of traditional medicine include cauterizing, herbal medicine, dietary treatments, chiropractic, fracture reduction, and cupping”. 22 At the center of Medicine and traditional healing are Saudi culture and Islamic faith, which oppose the concepts of “hastening death,” and constant questioning about the effect of opioids and medications at the end of life affirms Saudis' adherence to their faith. 22
Following is a case study brief that follows a 25-year-old Dutch-Moroccan, second generation, woman who was diagnosed six years earlier with Ewing sarcoma at level Th12–L and was treated with chemotherapy and irradiation. Three years earlier, she had a vertebral corporectomy done at level Th11 up to L2–L3 for a local recurrent disease. At that time the patient received the implantation of a carbon cage to stabilize the spine. 23
The female patient returned with progressive disease of the primary tumor and recurrence of multiple pulmonary metastases. Her analgesic treatment was set and satisfied with them, she went home. Six weeks later, she was readmitted again for severe pain, but for the first time, she seemed resigned to her pain. 23 This case is in contrast to the dying experience of Arab-world born patients who see the end of life from the Islam and Qur'an framework.
The overarching gaps include the regulation and availability of analgesics within Islam. Studies in this area will clearly outline and disseminate the permitted uses of analgesics. The second gap exists in the nexus between the common values and beliefs of Islam, and the universal philosophy of palliative and hospice care. Bridging these two gaps will move the literature forward and away from the limits of descriptive studies to research that builds capacity and promotes universal end-of-life care within the principles of Islam. Below are a few of the key studies that can easily start to fill the knowledge gaps:
• In-depth content analysis study of the Holy Qur'an and its references to the treatment of pain. • Compilation of the Ijmas (consensus) set by the Ulama's on the subject of pain management. • Survey, education, and training programs that bridge the values set forth in the Holly Qur'an, Ijmas, and the universal values set forth in WHO palliative care declaration.
These key studies will shed insight and clarity into our posit that palliative and hospice care values are values already espoused and practiced to some extent within Islam. A better understanding of the intersection of end-of-life care, the Holy Qur'an, and Islam has the potential to improve the dying experience of Muslims. A dying experience without fear of Allah, sinning, or retribution from fellow faithful.
In sum, there is a need for national policies to address end-of-life care within the context of Islam. A universal philosophy of family caregiving, family, and spirituality similar to that of hospice and palliative care already exists within Muslim societies, and the human condition of fear of pain and disease is a major theme. Following is a description of the fundamental premises of the religion of Islam and their relevance to the care of a seriously ill patient and family. The Shari'ah, the source of normative life from God to Muslims, guides end-of-life decisions. Life is considered belonging to Allah and cannot be terminated by human actions. This is because life links a Muslim to Allah in a sacred bond of trust. This bond only ends when God gives permission for it to end. Pain is how God connects with the humanity of a devout and pain is never an “evil.”
For physicians, Islam charges them with responsibilities not to actively or passively end life. This means that the intentions of the physician to administer palliative care must be rooted in virtue. In our case, palliative care, the intent is to ease pain and suffering without expediting natural death. 7 That said, managing pain does not mean eliminating pain or impairment, as pain at the end of life can be constant and requires titration, which allows for Muslim patients to feel that their pain is a Kaffarah or expiation for their sins.25,26 Palliative care cannot nor should it guarantee the elimination of pain, as it is more about managing the pain to make the patient comfortable.
Conclusion
Local, regional, and national culture and norms shape the human experience regardless of nationality, origin, ethnicity, or religion. That said the universal principles of hospice are a natural bridge to better end-of-life care within the cultural and religious norms of Islam. Common threads among nations include education, health, family, and fiscal constraints. Once we peel back the layers of culture and norms that make eastern countries different from their western counterparts, we find that humanity, spirituality, suffering, pain, and familial ties persist regardless of nationality, origin, ethnicity, or religion. The hospice and palliative care philosophy and programs are not about dying like westerners or dying like Americans; it is about the human condition of dying and not wanting to die alone, in pain, unforgiven, or without dignity or respect.
Footnotes
Author Disclosure Statement
No competing financial interests exist.
References

