Support Care Cancer (2014) 22:3253–3262 DOI 10.1007/s00520-014-2347-4

ORIGINAL ARTICLE

Developing a palliative care service model for Muslim Middle Eastern countries Ahmed al-Awamer & James Downar

Received: 3 February 2014 / Accepted: 29 June 2014 / Published online: 17 July 2014 # Springer-Verlag Berlin Heidelberg 2014

Abstract Purpose Palliative Care (PC) was first introduced to Muslim Middle Eastern (MME) countries in 1992, but growth of PC has been slow and access to PC is still limited in the region. While most PC models have been developed in Western countries, MME societies have different cultural and religious values that are not incorporated in Western models. We conducted a qualitative study to look at these differences, in order to inform a culturally acceptable model of PC that meets the needs of MME patients and their families. Methods We conducted semi-structured interviews of PC physicians and nurses with experience in both Western and MME countries. Participants were identified by snowball sampling. Interviews were transcribed and analyzed using a modified grounded-theory approach. Results We achieved conceptual saturation after 13 interviews. Participants identified four differences between PC practice in Western and MME countries including: cultural differences, legal and policy differences, stances on PC philosophy, and the availability of resources and support for PC. Participants identified five barriers to advancing PC in the MME: shortage of resources, unclear laws and policies, healthcare system barriers, unfamiliarity with the role and benefits of PC, and cultural barriers. Respondents suggested many facilitators at the institutional, regional, and societal levels. A. al-Awamer Department of Psychosocial Oncology and Palliative Care, Princess Margaret Cancer Center, University Health Network, 610 University Ave., Rm16-575, Toronto M5G 2M9, Canada e-mail: [email protected] J. Downar (*) Divisions of Critical Care and Palliative Care, Department of Medicine, University of Toronto, 200 Elizabeth St. 9N-926, Toronto M5G 2C4, Canada e-mail: [email protected]

Conclusions We identified a number of important differences in PC practice, as well as common barriers and facilitators for developing PC services in MME countries. This information can help clinicians who are developing PC services in a MME country. Keywords Palliative care . Middle East . End-of-life . Culture . Muslim . Multidisciplinary care . Spiritual care

Introduction Palliative care (PC) aims to relieve the suffering of terminally ill patients through communication between the health providers and patient and their families; management of physical symptoms; and psychosocial, spiritual, and bereavement support [1]. PC services have proven to provide greater patient satisfaction and better communication [1, 2], reduce intensive care unit (ICU) admissions and readmission, and lower total healthcare costs following hospital discharge [3]. Early integration of PC in the management of terminally ill patients has been shown to improve quality of life and survival [2, 4]. PC was first introduced to the Islamic Middle Eastern countries in early 1990s [5, 6]. Despite this early introduction, the growth of PC has been slow and access to PC is still limited in most of the region’s countries [5]. Zeinah and colleagues [7] report on the progress of PC in most Middle Eastern countries and note the huge shortage in PC programs compared to the high incidence of cancer. Cultural and religious values, beliefs, and traditions have a huge impact on end-of-life experience and decisions. While most PC models have been developed in Western countries, Muslim Middle Eastern (MME) societies have different cultural and religious factors that are not considered in Western models [8, 9]. Moreover, legal constraints are different in the Middle East, which must be taken into consideration when

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developing a suitable model for PC [10]. So far, no previous studies have explored these cultural, religious, and ethical differences, and how they impact upon the development of PC in the MME region using primary empirical methods. We conducted a qualitative study to look at these differences, in order to inform a culturally acceptable model of PC that meets the needs of MME patients and their families.

Methods We used qualitative case study methodology to identify the differences between Western and Middle Eastern PC practice and barriers and facilitators for advancing PC in MME countries. We used qualitative methods because they are appropriate when trying to understand the complex social phenomena that occur in PC practice. Participants We aimed to enroll English-speaking PC professionals with experience in both Western (i.e., European, North American, or Australian) and MME countries (i.e., North African or Southwest Asian countries where Islam is the majority or official religion). We reviewed the recent literature to identify investigators who published articles relevant to end-of-life care in MME cultures. In addition, we used snowball sampling by asking identified experts to suggest individuals worldwide with interest and expertise in this area, in order to include experts who might not have a research focus. We solicited participation via e-mails. Given the small number of individuals who met the inclusion criteria, one of the authors also served as a study participant to help ensure conceptual saturation. Ethics and confidentiality This study protocol was approved by the Research Ethics Boards of the University Health Network in Toronto, Canada. All participants provided voluntary and informed consent prior to enrolment, and all participants could opt not to provide any personal demographic information.

Interviews and analysis We conducted semi-structured interviews using a question guide that was developed for the study. All consenting participants were interviewed for 30–45 min by telephone or faceto-face. We continued enrolling subjects until we had achieved conceptual saturation for both Western and MME PC. All interviews were conducted by the primary author

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(AA), who have PC experience in both the West and the MME. In order to ensure a similar and consistent approach, the first interview consisted of one author interviewing the other. The next three interviews consisted of both authors (AA and JD) interviewing the participants together. The remainder of the interviews was conducted by the primary author (AA). Interviews were digitally recorded, and professionally transcribed with all identifying information removed from the transcription. Transcripts were analyzed using a modified grounded-theory approach using open coding to identify important concepts, and axial coding to organize the codes into themes. Data analysis was concurrent with data collection. The first six transcripts were coded independently by the authors. The authors then compared their coding schemes and reconciled any discrepancies between the two, and the remaining transcripts by a single reviewer (AA). In order to minimize the potential effects of having one author also serving as a participant, we ensured that all transcripts were analyzed independently by the primary author at some point. The final categories were developed by consensus of the two authors.

Results We invited 19 PC professionals to participate in our study. We did not receive replies from four invited candidates. Two of the invited participants did not wish to participate in the study because of time constraints, and fears of identity recognition given the small number of PC professionals in the region. Conceptual saturation was achieved after a total of 13 interviews; 1 nurse manager (Middle Eastern-based) and 12 physicians (6 Middle Eastern-based and 6 Western-based). The participants had practiced PC in six different MME countries and three Western countries. We have withheld more detailed demographics (Table 1) in order to protect the identity of the participants, since there are a relatively small number of practitioners who meet the inclusion criteria. Differences between Muslim Middle Eastern and Western PC service models Participants reported many different PC service models in Western and Middle Eastern countries, but they identified a number of common features within each region (Table 2). Western models were described as integrated services that treated patients with many diagnoses, at any stage, sometimes with ongoing active disease management, using a holistic approach to address multiple issues. Middle Eastern models, by contrast, were typically physician-led hospital-based services that focused on treating physical symptoms in cancer patients.

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Table 1 Participants’ demographics Western-based (6)

ME-based (7)

51 66.6 100 0 0

42 57.1 85 15 100

Age (mean)* Gender (% Male) Physicians (%) Nurse manager (%) Muslim religion (%)

Struggles of Muslim Middle Eastern and Western PC service models Participants described different struggles for PC services in each region (Table 3). In the Western model, PC practitioners were felt to struggle with managing transfers to non-acute settings, limited PC unit bed capacity, challenges with prognostication in patients with non-cancer diagnoses, late referrals to PC, poor physician reimbursement, and time constraints. In the Middle Eastern model, PC practitioners faced a shortage of skilled medical staff, limited drug availability, limited availability of home care, and integrating services across care settings. PC practice differences between Western and MME countries Participants reported four common themes when describing the differences between PC practice in Western and MME countries (Tables 4 and 5): (1) cultural differences, (2) legal/ policy differences, (3) differences in the understanding of PC, and (4) the availability of resources and support for PC. Cultural differences between the West and the MME included communication style, the role of the family, the importance of religion, and the societal view of PC in general (Table 4). In terms of communication style, participants felt that families in MME communities perceived the disclosure of a terminal diagnosis and prognosis as inappropriate and harmful to the patient. Many recalled examples of families blocking

Table 2 Differences between MME and Western PC service models

these conversations. They also felt that people in the MME favored indirect forms of communication, with avoidance of certain words such as “cancer” and topics such as feelings of depression and existential suffering. The role of the family was also perceived to be different in the MME. While individuals make decisions about their medical treatment in Western countries, families are the main decision making unit in MME countries. This can reduce the burden of difficult decisions on patients, but add to the burden on families. Participants noted that MME families provided strong support for their patients, to an extent that was not seen in Western countries. One of the participants commented that MME families feel very responsible for their loved ones, and they were willing to provide bedside assistance around the clock even in an inpatient setting. On the other hand, because of the strong family presence, participants felt that patients were reluctant to openly express their feelings and frustration as it might be perceived as criticism of their families’ efforts. Participants also perceived a social pressure on families to demand aggressive medical care, even if that was inconsistent with the patient’s wishes. Another cultural difference was the strong impact of religion on medical decisions and the illness experience. Many participants cited the example of obtaining a fatwa (religious verdict) to support the use of opioids for pain control in cancer patients. This profoundly improved patients’ acceptance of opioids. Participants noted that religious considerations could be very complex, and that different sects of Islam (e.g., Sunni, Shia) have different religious views on medical therapies and end-of-life care; what was acceptable to a patient from one sect might not be acceptable to someone from another sect. Participants felt that patients’ strong attachment to religious values could be a strong source of support, helping them to cope with their disease burden and finding a meaning for their illness. However, many Eastern-based participants felt that existing spiritual care programs are focused on providing classical religious teaching in a prescriptive manner, such as giving sermons and guidance on religious practices and prayer

Western Model

Muslim Middle Eastern model

Integrated hospital and community PC Recognized field of medicine, distinct entity Special pediatric programs Cancer and non-cancer patients Short and longer prognoses Concurrent with active disease management Well-structured and integrated with community Holistic approach, Integrated with psychosocial and spiritual support Skilled multidisciplinary PC team members

Hospital-based with limited community PC Not a distinct entity, but a component of oncology Combined pediatric and adult Exclusively Cancer patients Short prognosis Beyond disease modifying treatment Isolated programs, no community of partners to share care Oriented to physical symptoms, with limited psychosocial or spiritual support programs Other disciplines are not routinely integrated with PC team

3256 Table 3 Struggles of Western and MME PC service models

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Western model struggles

Muslim Middle Eastern model

Managing transfers to non-acute settings Non-cancer patients (prognosis and planning) Late referral to PC service Limited PC unit bed capacity Physician reimbursement and time constraints

Shortage of skilled medical staff Limited drug availability Limited availability of home care Integrating services across care settings –

without deeply exploring or addressing the concerns and suffering of the patient or family. Furthermore, participants noted that some community spiritual healers may advise against medical recommendations, such as stopping pain and comfort medication, using contaminated and harmful herbal products, and continuing with inappropriately futile medical care, which adds to patient and family distress. Respondents from both the West and MME highlighted a difference in societal view of PC in the MME. However, respondents from each region appeared to have a different perception of the acceptability of PC. Western-based respondents reported a general reluctance to accept a PC philosophy and higher demands for aggressive medical care in MME communities. In contrast, MME-based participants felt that MME communities would accept a PC philosophy if given sufficient education and experience. Another common theme was the difference in laws and health policies between Western and MME countries (Table 5). Many participants perceived a lack of legal clarity around end-of-life medical issues. This leads to a defensive practice in which inappropriately aggressive medical care is provided solely out of fear of medicolegal consequences. There was also a lack of consistency in health policies among hospitals. For instance, subcutaneous opioid infusions were available in some tertiary cancer centers but not in other tertiary centers in the same jurisdiction. Some patients who were referred to tertiary centers and started on advanced pain control therapies could not be transferred back to their referring hospitals because the latter did not offer these therapies. Participants felt that some of the core concepts of PC are not well understood in the MME region. Many patients and families are unaware of the term, and even medical staff and policy makers are often unclear about the role of PC for treating their patients. Some felt that PC is accorded a secondary status among the medical services. Beyond the term “palliative”, participants also reported a poor understanding of the therapies and care models used by PC. One respondent recalled being asked by a pharmacist to justify the need for more than one opioid on the formulary. Others found it hard to implement an interdisciplinary model when the allied health professionals had so many commitments around the hospital.

The final common theme was the limited PC resources in the MME. Although Western countries have a shortage of PC resources, participants described a larger deficit in resources in the MME. They reported a shortage of trained PC professionals, in particular those trained in supportive psychosocial and spiritual care. Although some MME countries are relatively wealthy, PC services do not necessarily receive adequate financial resources to meet their needs. Opioid medications are sometimes unavailable due to historical limitations on importation, and research funding and support for PC are almost non-existent.

Barriers for advancing PC in MME We identified five common themes for barriers to advancing PC in the MME region (Table 6). These barriers were related to resources, laws and policies, the healthcare system, unfamiliarity with the role and benefits of PC, and cultural barriers. Since many barriers were related to “differences” between Western and MME PC practice, there was considerable overlap with the previous section. The only themes that participants mentioned as barriers but did not mention in the “differences” section were related to the healthcare system itself. Among the system level barriers, participants mentioned a strong hierarchical tendency within the healthcare team and within the hospital as a whole. This hierarchy results in one-way communication, rather than an information exchange that is favored in interdisciplinary models. One participant recalled a physician criticizing a PC nurse in a disrespectful way when the nurse reported that a patient had a high pain score. The physician felt that this patient was exaggerating his pain scores and told the nurses not to record the patient’s reported pain score. This eventually led to nurses routinely underreporting pain scores in all patients to avoid similar criticism. Another system level barrier was the financial incentive for private hospitals to provide aggressive, nonbeneficial end-oflife care. This was felt to add to other PC barriers, since PC is usually lower cost than aggressive care. Finally, all participants agreed that current MME PC programs are limited in scope and isolated from one another; the lack of a nationwide plan to integrate and develop PC services was felt to be a major barrier.

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Table 4 PC practice differences between Western and MME countries: cultural differencesa Communication Indirect communication style

-

Avoidance of certain topics



Truth-telling avoided or blocked by family

Family role

Family decisions supersede individual autonomy



Family takes the burden of difficult decisions

-

Strong supportive role

Importance of religion

Care decision seen through religious lens



Diversity of religious views



Meaning of illness



ME spiritual care overtly religious and prescriptive

•Societal view of PC in general

•Perceived resistance to PC philosophy and demands for aggressive treatment (disagreement between Western and MME practitioners)

•“In the West, we have very direct conversations with people where we use precise terms and nouns, and we are expected to be very concrete about how we communicate. In many parts of the world that’s not the case. So people will often infer meaning from the context, or people are used to avoiding particular terms and talking around the subject and there is felt to be a shared understanding of the topic even though neither of you have actually used the word”—Western provider •“If I start asking about emotional problems or mood disorders, there’s a cultural stigma attached to depression…it may be a reflection on the family….it’s very difficult for physicians to treat..psychosocial issues…because there is a filter”—Western provider •“The decision maker in ME is the family, not the patient. And the patient is always protected by the family to hear the bad news, or the life expectancy, or prognosis”—Eastern provider •“You take a woman in the west with breast cancer. She will have to get all the knowledge she can about all the treatment… Now she may ask her family, but she will have to make that decision on her own. And live with it, whether it’s the right one, the wrong one, if it makes her feel sick, her hair falls out or her left arm falls off. Consider the old lady in [ME]. First of all, it’s in God’s hands, and secondly the eldest son… would then find out all the information, take all that responsibility. And all that patient has to do is sit there believing in God, believing that their family will do the best thing for them, and that the outcome will be good. Now who has the best deal there? The Westerner [who] has to make all the decisions and worry about them, or the little old Bedouin lady covered in tattoos, leaving it up to her kids?”—Western provider •“The family feel shame if they didn’t pursue a certain course of treatment or if they’ll feel judged because they didn’t take their mother to the intensive care unit. They left her. “Why didn’t you do this for her?’—Western Provider •“And one of the amazing things when I arrived there, I found there were no volunteers….in the Middle East, family look after people”—Western provider •“So he was able to say to people that Mohammed the prophet (peace be upon him) said that you don’t have to have all the treatments if it seems as if things aren’t going well. You do not have to have more treatment. And also that you shouldn’t suffer”—Western provider •“[There are differences] between [Muslims group] Sunni and Shia and when you have like the DNR, might be accepted by one group but not by the others”—Eastern provider •“Westerners tend to think about how this relates to them, why this has happened to them, did they do something wrong, and they’re actually upset because something has happened to them because they’ve eaten alfalfa, granola, gone to yoga, done sports and suddenly they get cancer. They’re really pissed off. In the ME, the patients are more like [older Westerners] who say ‘it is God’s will.”—Western provider •“The spiritual counsellor, they have different attitudes from the spiritual care in WEST. Western spiritual care aim to identify the spiritual issues guided by patients and supported by the spiritual counsellor. In other words, you try to find spiritual issues from the patient. The attitude of spiritual counsellors in ME is that they try to give advice without assessing the patient, without assessing the spiritual need for that particular patient.”—Eastern provider •“I think in terms of the cultural acceptance of palliative care, for me to understand why, given that families were often making the wrong decisions on behalf of the patient, who was no longer able to make decisions because they were physically deteriorated, why it was so important for them to see their family member get very aggressive care”—Western provider

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Table 4 (continued) •“In the beginning there was much resistant, at least in our [hospital]. People were not convinced of what palliative care medicine is going to do for patients. But when we started some education activities, and people saw the true positive end of the presence of the palliative care unit, people turned around. People who are now supporting palliative care are those who were against palliative care in the beginning. So they are accepting the philosophy of palliative care”—Eastern provider a

These differences are framed as cultural factors that the participants felt to be important in the MME but less so in Western countries

Facilitators Participants were asked to describe their personal experiences or opinions for how to overcome barriers to PC, and the strategies they described fell into five broad categories (Table 7). At a hospital level, participants felt that choosing the “right” personnel to start the service and getting support from the administration were critical factors for the success of PC programs. Many emphasized the importance of engaging all heath team members (physicians, nurses, social worker, and spiritual care counsellors) and building personal relationships with other departments. Participants suggested that new PC teams should prioritize their work and focus initially on the sickest patients and then expand. Most participants commented that integrating PC and psychosocial support programs is an important factor for the success of PC program. At a regional/national level, participants suggested the need for an integrated, government-supported national PC program that would be accessible to all patients with advanced illness. Another suggested strategy was the development of national end-of-life health policies and guidelines for the medical staff. Participants also suggested relaxing restrictions on opioid usage, to help address the limitations of supply and the low rate of prescription. On a societal level, participants suggested targeted media campaigns to improve public awareness, and engagement of community and religious leaders in order to ensure better understanding and acceptance for PC. Most participants commented on the need to improve PC education and training. They suggested enhancing PC education and exposure for medical trainees as well as staff, and expanding PC fellowship training programs to attract more trainees. Finally, one of the participants described how research helped him to better understand his patients’ needs, and gave his program credibility in the eyes of the hospital’s administrators. Although participants offered a broad range of responses about differences in PC practice, as well as barriers and facilitators for advancing PC in the MME, many common themes emerged. No themes were contradictory to any other, aside from the acceptance of a PC philosophy (mentioned above); Western providers tended to report that patients/ families in the MME often reject a PC philosophy, whereas

MME providers felt that patients/families would accept a PC philosophy if educated about the meaning of PC (Table 7).

Discussion In the present study, we interviewed PC practitioners with experience in Western and MME countries to determine the differences between PC practices in these two regions, identify barriers to the growth of PC in the MME, and learn about strategies that might overcome these barriers. PC in the MME has grown slowly, and is still not available to many patients in the region. Virtually all PC practitioners in the MME are Western-trained, and so the slow growth of PC in the MME may be due to differences between the Western model of PC and the cultural norms of the MME. To our knowledge, the present study is the first to explore these differences from the perspective of those who have PC experience in both regions. Many participants identified a fundamental rejection of a PC philosophy in the MME. Family members were almost invariably the decision-makers, and they would demand the most aggressive care available, either from a belief that this was their religious obligation, or the fear that they would be judged harshly by others for agreeing to less aggressive care. But even in cases where the patient/family does not reject PC, there are important barriers. When we consider the common components of a PC consultation as described by Morrison and Meier [1], we find that all of them are affected by the differences/barriers identified in this study. PC practitioners can help patients who do not wish to know their diagnosis or prognosis, but it is hard to develop specific care plans using indirect communication styles that avoid difficult subjects. Pain management may be challenging when access to opioids or advanced pain control techniques is limited or inconsistent. The stigma attached to mental illness can impede an exploration of psychosocial suffering and depression, which are difficult to treat at the best of times. The Muslim faith can help patients who search for meaning in their illness, but a prescriptive approach to spiritual care (in any religion) may not always address the concerns of the patient [11]. Finally, PC practitioners will struggle to provide holistic support so long as there are limited allied health and social resources to deploy.

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Table 5 PC Practice differences between Western and MME countries: non-cultural differencesa “People were really afraid of the consequences of not doing the most aggressive thing possible because their perception was that a relative would come by later in the game or even after the death and say ‘What do you mean, this person died without getting CPR? I’m going to sue you.’”—Western provider – Variation in policies among hospitals/regions “You can see the variation in policies and symptom [management] delivery from region to region and even from hospital to hospital. Although it is all being ruled by Ministry of Health”—Eastern provider – Different ethical framework and parameters: “Talking about DNR, withholding medication, withholding procedures, and the different views of autonomy and life preservation fatwa states that it is the decision of the doctor. If the doctor decided that this is the right thing to do the religion would agree with that”—Eastern provider Understanding Poor awareness of PC among patients and families “They don’t know what the service is. What is palliative care? They don’t know of PC what this term is. They don’t have any idea about palliative care”—Eastern provider – Role of PC is not clear to medical staff “People are looking at palliative care as a sort of secondary status, not very crucial or extremely important in the system. I mean, if it is there then good, if it is not… So it doesn’t have the same recognition as I’ve seen in places like [North America]” —Eastern provider – PC interventions are not supported “The pharmacy, for example, thinks that if I have morphine and hydromorphone, both are opioids and both work the same, so why do you need both?”—Eastern provider – PC Multidisciplinary team model is not well “[Professionals from] other areas like social work, like psychology, psychiatry, established dietician, so on….are not part of the team and sometimes they have a lot of commitments elsewhere to see other services and that’s why we do have a lot of ties and involvement”—Eastern provider Resources/ Human resources “Whereas in this [western city] of about 2 million people here…we have about 15 support doctors purely doing palliative care. In [ME country] we had about 8–9 for the whole country [20–25 million]”—Western provider – Integrated psychosocial support programs “The problem with building a psychosocial service is lack of staffing and training—having trained staff to operate in such a service”—Western provider – Spiritual care programs “People try to search—families—to go and find someone in the community who can address these spiritual needs for them and sometimes this is not done in the most appropriate way. They go and search for people who are not well qualified, who don’t have enough knowledge how to deal with these patients, and again there is no supervision…sometimes it is counterproductive …[As healers sometimes interfere with medical management and ask for change in medications]. It can go on to that extent,”—Eastern provider – Administration support “Palliative care professionals in the ME are still struggling. They are struggling to convince administration and Ministry of Health people that there is a need for palliative care”—Eastern provider – Medication availability “So if we ran out of fentanyl patches we’d have to switch them over to something else. So it was a reliability of supply”—Western provider – Financial resources “What hope does this hospital ever have of doing palliative care? They’re struggling to give care, there is still quite a lot of TB and infectious diseases are a big problem in the Middle East. There is so much to do that palliative care really becomes a luxury”—Eastern provider – Research resources “To conduct research, first of all you have to have funds and this is extremely difficult to get a research project funded in palliative care,… you don’t have research coordinators, you don’t have people who can conduct interviews if you want to”—Eastern provider Law and health policy

a

Lack of legal clarity and fear of medico-legal consequences

These differences are framed as factors that the participants felt to be important in the MME but less so in Western countries

Some of these barriers are more difficult to overcome than others. The facilitators identified by the participants are predominantly aimed at organizational strategies, increased resources, and education. In addition, we suggest that PC providers need to model an effective interdisciplinary dynamic by avoiding hierarchical models of interactions as suggested by Silbermann and colleagues [12]. Team dysfunction can be overcome by agreeing on mutual

respect and valuing differences of opinion [12, 13]. Funding can be a major issue for some of the region’s countries [7], but even in the MME countries that have abundant financial resources, we would advocate for stable funding to develop a service that can meet the demand for PC. High-level administrative support is also important, as this can help to secure resources and integrate the service into a larger system.

3260 Table 6 Barriers for advancing PC in MME countries

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Resources barriers

Law and policy-related barriers

Healthcare system barriers

Unfamiliarity with the role and potential benefits of PC

Cultural barriers

These facilitators are likely to help with the non-cultural barriers, but none of the participants had any suggestions for addressing the cultural barriers, such as indirect communication. In order to understand these cultural barriers, we must understand how MME societal norms are influenced by Islamic values and teaching. Islamic beliefs such as predestination and life after death are central to MME peoples’ interpretation of the meaning of illness [14]. Many Muslim patients have total faith in God’s will and do not perceive illness as a punishment, but rather as a way to atone for sins [15]. These beliefs and teachings clearly influence end-of-life decisions. We also need to appreciate the familistic nature of MME society. Individuals consider themselves members of extended families, and caring for elderly and gravely ill patients is the duty of the family [16]. Gender-specific interaction is another feature of MME societies that adds to the complexity of family interaction [11], and it can be difficult to involve both genders in family discussions. Based on the results of our study, we propose that a typical Western PC model could be modified in three ways in order to accommodate the cultural, legal, and religious norms in MME societies. First, PC practitioners should accommodate extended families. Adames and colleagues [17] describe a PC cultural model for Latin American families (another familistic culture) such as asking patients and families to identify a family spokesperson and maintaining open communication with that spokesperson. In order to involve both genders in

Shortage of trained PC professionals Limited psychosocial support Lack of integrated patient-focused spiritual care Limited financial resources Limited support for PC research Limitation in establishing functional multidisciplinary team Inconsistent health policies Lack of legal clarity about end of life therapies Lack of a national consensus on PC standards Lack of hospital-level administrative support for PC Lack of government support for PC programs Financial incentives for private hospitals to provide aggressive and nonbeneficial care at the end-of-life. Restricted opioid access for PC patients Lack of nationwide integrated and accessible PC services Lack of support programs for PC professionals Lack of national plans to advance PC Hierarchy within administration and within medical team Medical staff resistance to PC and late referrals Patients and families resistance to PC Limited support from administrators Limited exposure of medical trainees to PC and end-of-life issues Truth-telling blocked by family Family demands for aggressive and nonbeneficial care at the end-of-life

family discussions, the PC team can incorporate male and female members, and a flexible structure to maximize family comfort. In addition, PC practitioners can harness the supportive nature of the families to reduce the need for hospitalization and overcome the scarcity of home care resources. Community palliative care programs should be designed to support and educate families to care for a terminally ill patient. Second, in order to accommodate the indirect communication style of the MME (also anthropologically known as a “high context” communication style [18, 19]), PC providers should use kind, personalized verbal and nonverbal interactions that engage the patient and family [20–23]. This engagement is important when negotiating nondisclosure requests, or de-escalating conflict in an adversarial situation. Many participants stressed the importance of exploring family fears and acknowledging the pressure on families to protect their loved ones. This fosters a trusting relationship with the family and allows for more meaningful engagement [17], and is recommended for this type of request in any cultural context [18]. Third, PC practitioners need to respect Islamic principles when developing policies, and it may be helpful to engage Muslim scholars in this regard to develop a fatwa. Many countries are currently struggling to develop or interpret laws that govern care at the end-of-life; MME countries are no exception. PC practitioners may not be able to suggest withdrawal of life support, as they would in Western countries. But

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Table 7 Facilitators for advancing PC in MME Strategies for starting new hospital-based PC services

– –



– –

Organizational strategies at a regional/national level –



Societal

PC Education and training

– –

PC research

“Pick the right people to build, the right staff. You want to find the medical staff— nurse, physician, social worker—who are oriented in that direction and have a good amount of knowledge and expertise and interest but also have credibility and the capacity to build relationships with other doctors and teams within the hospital.”—Western provider Get administration support “We had an [administrator] who was enlisted for experience in palliative care and then [] this person was ready to give us whatever we needed”—Western provider Building relationships “The other thing I cannot emphasize enough, how important personal relationships are in palliative care…. I think doing lots of teaching rounds, spending a lot of face time, going to them and understanding what’s going on with their patients, offering to sit in on their rounds, and attending their rounds, so that they view you now as a member of the group and you have a genuine desire to help them. Not undermine them, and I think that’s a big positive.”— Western provider Prioritize your work “Based on the experience here, starting in the hospital and focusing on the sickest patients. We talk about ‘low-hanging fruit’ - so the sicker patients in the hospital, the inpatients and the people who come to the palliative care unit, and then at a later stage would be outpatient, and then probably home care even after that based on some of the challenges around infrastructure and other cultural issues”—Western provider Engage nurses and other health “And the nurses on the oncology floor in the [] were delighted when palliative teams in building the PC service care got involved. In fact a lot of them were pushing the oncologists to refer to us.”—Western provider Integrate psychosocial support “Incorporation of psychosocial support as part of palliative care. Psychosocial programs support is not a luxury care, it should be a part of our analysis and assistance of our patients.”—Eastern provider Integrate PC programs across a “I think the advice is to have a strategic plan supported by the [government] with a region/nation budget and clear vision for this service. Other than that, I think the palliative care will still [be limited].”—Eastern provider Develop national PC health “One of the barriers is getting an understanding of how palliative care should be policies and guidelines practiced. Have guidelines to guide the people in this area, so one person is coming from a western background and another person is coming from a [country] - each one of us is competing about which system to use, [we need to develop] our own guidelines. Developing our own structure.”—Eastern provider Improve access to PC medication “I think availability and affordability of medication is very important - we should loosen up some strict policies about medication, based on the needs. Analysis of existing regulatory barriers and working with government to overcome these barriers, this is very important as well”—Eastern provider Improve public awareness “I think with targeted media campaigns and writing in newspapers and things like that we could get that message out to shift culture and that might work. But to send a message to the community that the best quality of death would be in a palliative care unit, not in an ICU”—Western provider Involve community and religious “Getting the fatwa—religious verdict—it was great, because we got home care, leaders in advocating for PC we got morphine in the home, we got subcutaneous infusions in the home. It was actually wonderful. That was good.”—Western provider Expand PC training programs “The fellowship training program, for both local and international doctors, will overcome the manpower problem and to generate as many qualified trained physicians in palliative care, so I think training is one of the solutions”— Eastern provider Educate medical staff about PC “I think that with all the education that we are doing all over the years…, there are plenty of conferences and workshops and awareness regarding palliative care. we have slightly overcome the poor understanding”—Western provider Enhance PC education and exposure “You need to have a well-functioning palliative care unit and then you need to for medical students and trainees target the medical schools and the residency programs and invite people to come and do electives”—Western provider Support PC research “Research is very important, even with very limited resources, we did some useful research published in international journals, just to show people that we are doing is the right thing and this had a significant impact, at least on administration side.”—Eastern provider Choose the right personnel

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aggressive care can be limited by non-escalation as part of a palliative care plan. The main limitations of our study relate to the fact that we used snowball sampling to determine the perspectives of a small group of informants, which may have selected a group of like-minded individuals whose opinions would differ from other PC practitioners. In addition, our use of the terms “Western” and “MME” implies that these groups are homogeneous, which is clearly not the case. Also, since our participants were almost exclusively physicians, we may have missed the perspectives of other disciplines, or indeed patients and family members themselves. This is a result of the sampling method, and the limited number of allied health with PC experience in both Western and MME countries. In summary, using the experience of PC clinicians who have worked in both Western and MME countries, we identified a number of important differences in PC practice, as well as common barriers and facilitators for developing PC services in MME countries. This information can help both Western and Middle East-based clinicians who are developing PC services in a MME country. Acknowledgments We would like to thank the study's participants for thier thoughtful quotes and valuable contributions. Conflicts of interest The authors have no conflicts of interest to declare. The authors have full control of all primary data and we agree to allow the journal to review the data if requested. Contribution Both authors contribute to study design. AA conducted literature searches. Both authors conducted interviews, analyzed the data, and participated in data interpretation. AA drafted the original manuscript. JD revised the manuscript critically. Both authors approved the final version of the manuscript. Funding This study was supported by the Toronto General Hospital Foundation.

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Developing a palliative care service model for Muslim Middle Eastern countries.

Palliative Care (PC) was first introduced to Muslim Middle Eastern (MME) countries in 1992, but growth of PC has been slow and access to PC is still l...
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