Turkish imams and their role in decision-making in palliative care: A Directed Content and Narrative analysis

Background: Muslims are the largest religious minority in Europe. When confronted with life-threatening illness, they turn to their local imams for religious guidance. Aim: To gain knowledge about how imams shape their roles in decision-making in palliative care. Design: Direct Content Analysis through a typology of imam roles. To explore motives, this was complemented by Narrative Analysis. Setting/Participants: Ten Turkish imams working in the Netherlands, with experience in guiding congregants in palliative care. Results: The roles of Jurist, Exegete, Missionary, Advisor and Ritual Guide were identified. Three narratives emerged: Hope can work miracles, Responsibility needs to be shared, and Mask your grief. Participants urged patients not to consent to withholding or terminating treatment but to search for a cure, since this might be rewarded with miraculous healing. When giving consent seemed unavoidable, the fear of being held responsible by God for wrongful death was often managed by requesting fatwa from committees of religious experts. Relatives were urged to hide their grief from dying patients so they would not lose hope in God. Conclusion: Imams urge patients’ relatives to show faith in God by seeking maximum treatment. This attitude is motivated by the fear that all Muslims involved will be held accountable by God for questioning His omnipotence to heal. Therefore, doctors may be urged to offer treatment that contradicts medical standards for good palliative care. To bridge this gap, tailor-made palliative care should be developed in collaboration with imams. Future research might include imams of other Muslim organizations.


Introduction
With a share of five per cent of the total population Muslims are one of the largest religious minorities in Europe. 1 Many of them have a Turkish background. 2 A characteristic of terminal illness in Muslims is an intensified focus on religion to cope with this profound event. [3][4][5][6] In this context, religion not only provides beliefs concerning death but also functions as a normative framework in medical decision-making. [7][8][9][10][11] Particularly in palliative settings, Muslims, like Christians and Jews, call on their religious leaders to learn the religious permissibility of treatment proposals. 4,[12][13][14] They contact mosque-based imams who fulfill similar roles as pastors and rabbis. 7,12,15 In addition to leading the five daily prayers and preaching the Friday sermon, imams serve their congregations by conducting rites of passage (involving birth, marriage, and death), providing spiritual care, religious education and answering questions about Islamic law, including those about medical decision-making. 12,[16][17][18] As yet, no research has been done into the way imams in the West perform their task in palliative care and their role. Hence, there is a knowledge gap regarding their contribution to the dynamics of doctor-patient relationships. To better understand medical decision-making in palliative care among Muslims, it is therefore important to investigate how they are guided by their imams.

Design
We undertook an interview study and qualitatively analyzed the gathered interview data to shed light on the attitudes and motivations of imams in the performance of palliative care. We aimed to discover which roles they see for themselves and how they construct these roles in the stories they tell. The two sub-aims warranted two methodological approaches. For the first aim we used a Directed Content Analysis. This is characterized by thematic structuring of texts using a pre-existing theoretical framework. 19 The second aim concerning construction of their role in their stories was explored through Narrative Analysis. Narrative Analysis conceives personal accounts as narratives in which individuals give meaning to experienced reality to construct their identity in interaction with their audience. 20

Setting
The study took place in the Netherlands where Muslims comprise 5% of the population. 15 The majority are of Turkish and Moroccan descent; they make up 37% viz 36% of the Muslim population and have their own religious organizations. 17,21,22,23 Study population Since our research team included a native speaker of Turkish, we focused on Turkish imams.

Recruitment
Imams of Turkish mosques in the four largest Dutch cities and surrounding municipalities were purposefully selected according to the following criteria: (1) being an experienced and full-time professional imam; (2) having received formal Islamic training in their country of origin; (3) having regularly advised and spiritually guided congregants in palliative settings. 24

Ethical considerations
Participants gave written consent after being informed about the purpose of the study. Due to the sensitivity of the issues, all agreed to encoded use of data. Names were therefore deleted in the transcripts. The Academic Medical Center's Medical Research Ethics Committee ruled that the Dutch Medical Research Involving Human Subjects Act (WMO) did not apply (Ref: W21_192 # 21.209app.).

Data collection
Semi-structured interviews were conducted in Turkish between February 2018 and June 2019 by NT, of which four together with GM. All interviews took place in the • • Imams are reluctant to advise patients to consent to termination of treatment for fear that all Muslims involved will be held accountable for someone's death by God in the afterlife. • • Fatwas by Muslim expert committees play an important role in shaping medical decision-making in palliative care.

Implications for practice, theory or policy
• • Palliative care tailored to the cultural religious needs of Muslim minorities must be developed.
• • Implementing adequate palliative care for Muslim minorities requires sustainable collaboration with imams and their congregations.
mosques in which the participants served as imams, in space suitable for undisturbed conduct of in-depth interviews. Participants were asked to talk about a case that involved withholding or terminating treatment they had been professionally involved in. Following an interview guide, they were encouraged to explore their thoughts and feelings (Table 1). Interviews lasted one to two hours and were recorded and transcribed verbatim. Participants were sent their transcript by email and given the opportunity to voice second thoughts. Once they agreed with the content, interviews were translated into Dutch by NT. Translations were checked for accuracy by an independent native Turkish speaker with an academic proficiency in Dutch. Based on this, final versions were determined.

Data analysis
The research team provided written comment on the translated transcripts once data collection started. After six interviews no new variations were found. To generate a richer dataset, four more interviews were conducted. The results confirmed our previous findings. GM analyzed the content using Ajouaou's typology as an analytical framework. 16 Using religious terms commonly known among Muslims, this typifies the basic functions imams perform in accordance with the expectance of congregation members who appeal to them for pastoral care. The typology distinguishes jurist (applier of Islamic law), exegete (interpreter of the Quran and the traditions of the Prophet Muhammad), missionary (preaching correct religious doctrine and the corresponding way of life), adviser (giving practical advice for dealing with difficult situations), prayer leader (leader of the five daily obligatory prayers), guide in rituals and blessings (pastor at prayers and rituals at rites of passage) and teacher (teaching religious skills such as performing obligatory prayer and reciting the Quran) ( Table 2). The performance of these roles is situational and represents complementary and often overlapping modes that imams use to approach a pastoral issue. With a view to interpretative reliability, NT randomly coded five interviews through this framework, after which it was concluded that these results matched those of GM. Subsequently     ("in doing so, she did the right thing") or fragments in which they step out of their story to comment on it for the purpose of conveying its moral to their audience ("You should know that it is beyond my responsibility to speak out on such things."). Carefully evaluating how stories are told provides insight into the deeper meaning, motives and values the narrator wants to convey to his audience. 25 After finalizing the results, AdlC and GM created a typology of the narratives.

Results
Twenty-seven candidates were approached. Twelve were not selected due to lack of experience with palliative care. Five declined to participate due to personal considerations or policies in their organization prohibiting their participation. Ultimately, 10 participated in the study (Table 3). We came across the roles of Jurist, Exegete, Missionary, Adviser and Guide in Rituals and Blessings.

Jurist
Congregants appealed to participants with the question whether a proposal to terminate treatment was in accordance with Islamic law. In exercising this jurist role, participants urged patients to continue treatment. Muslims are not allowed to interfere in life and death because God decides on this. Continuing treatment meant that when a doctor declared all treatment options to have been exhausted, a second opinion had to be requested. To ensure proper understanding of afterlife religious consequences of decision-making, a Muslim doctor was strongly preferred for this task. What was striking was that withdrawing treatment was associated with killing the patient. In cases where patients could not be kept alive with life support most participants transferred the role of jurist to fatwa councils within their organizations by asking these religious expert committees whether it was permissible to unplug. The imam then communicated the committee's affirmative response to the relatives. This allowed the imam and family members involved to avoid interfering in divine matters and thereby becoming responsible for the religious consequences of decision-making.
"You should absolutely consult the Committee so that neither you nor I bear any responsibility for it. I discuss those things with you and, although I will give you a likely answer, I refer you to the Committee. It is the Committee that takes the decision." (Participant 1)

Exegete
Four participants exercised their role of exegete by establishing causal relationships between their interpretations of the Quran, which they consider to be God's word, and what they believed to be the divinely determined outcome of the disease process. They transferred their exegesis to the patient's family by advising them on how to act in medical decision-making. Therefore, they interpreted a positive course of the disease as God's reward for their endurance. This meant that a patient's recovery after following their advice to disagree with the proposal to discontinue treatment was ascribed to their having acted according to God's command.

Narrative analysis
To enrich the Directed Content Analysis, we studied the stories told by the participants. The aim was to reveal the underlying meaning using Labov's approach. Therefore, we focused on the evaluation, that is the story elements that show how the narrator wants it to be interpreted by the audience. Three narrative types were distinguished: Hope can work miracles (participant 2, 3, 6, and 7), Responsibility needs to be shared (participant 1, 5, 8, 9, and 10) and Mask your grief (participant 4) ( Table 4).

Typology of narratives
Hope can work miracles. Doctors propose withholding or terminating treatment because they consider recovery to be impossible. After following the imam's advice to disagree with this, the patient shows miraculous signs of recovery. The message is that God is omnipotent, so nothing is impossible. If Muslims continue to hope by searching for a cure, basing that hope in a firm belief in God, He may reward them by making it happen. Responsibility needs to be shared. Agreeing to terminate treatment is associated with religious burden. This burden stems from the relationship between terminating treatment and the subsequent death of the patient. The possibility of such an association-and thus being responsible for the chain of events-implies a potential contribution to the patient's death. Consequently, those involved fear being held liable by God in the afterlife for the capital sin of culpable death. Therefore, advice on terminating treatment cannot be taken by imams alone but must be shared.

Main findings
This study shows how imams construct their roles in palliative care. Our Directed Content Analysis informs the Narrative Analysis by showing how transformation of this task is modulated through its role content. In turn, the Narrative Analysis informs the Directed Content Analysis by revealing motives behind religious advice and demonstrating its function within the story types. Our Directed Content Analysis revealed two patterns in response to proposals to withhold or terminate treatment. Where the The imam bears the responsibility of having agreed to pull the plug. 6 Hope can work miracles The imam is approached by telephone by a member of his congregation whose father is in a coma and who asks him to pray for his sick father.  first aims to maximize treatment, the second revolves around dealing with religious responsibility. The pattern aimed at maximizing treatment is narrated through the narrative Hope can work miracles. Modulated through the role content of exegete, the how of the story explains healing as God's reward for striving for maximum treatment. This is complemented through the role of adviser by pointing out misdiagnoses in which patients recovered.
The missionary-linked content, the why of the story, underscores God's omnipotence. Consequently, diagnostics that imply absence of cure should be rejected. Therefore, medical decision-making is constructed as a matter of faith in which not giving treatment (for reasons of hopelessness or futility) represents disbelief while hope for miraculous healing by striving for maximum treatment objectifies true belief in God.
Miracle-driven belief in cancer patients is known to reduce the ability to understand prognostics. 26 Patients' relatives sometimes believe that God's omnipotence manifests itself through intervention in the course of the disease. 27,28 In our data such belief-attached to striving for maximum treatment, aimed at inviting God to perform a miracle, as it were-is not just optional but presented as a condition for being a faithful Muslim. In a taxonomy that classifies God-attributed miracles, unshaken evocations concern a category in which belief in miracles is embedded in religions with worldviews enjoying supreme authority. 29 Since Muslims are committed to consistency between religious norms and treatment proposals affirmed through their imams, this is likely to affect clinical practice. 30,31 Projected onto our results, it evokes an image in which religion-based belief and evidence-based medicine are antithetical. 26,[32][33][34] The second pattern, which concerns religious responsibility, is narrated through the narrative Responsibility needs to be shared. The how of the story concerns the probability of being held accountable by God in the hereafter that comes with the role of jurist. This is due to interference with the moment of death by agreeing to withhold or terminate treatment. The missionary-role-linked message is that God disposes over life and death. Therefore, those who agree to terminate treatment run the risk of unauthorized access to His domain.
The tendency among participants to pass on questions about medical decision-making to fatwa committees is a present-day form of the traditional Islamic way of dealing with applied ethics. In it, imams are part of hierarchical structures in which fatwas are no longer the domain of the individual mufti. 16,35,36 They are now part of the collective effort of expert committees. 35,[37][38][39] Our data show that participants made exclusive use of such fatwas issued by their own organizations. Imams disseminate viewpoints on decision-making in palliative care that have been determined top down among their congregants. 2,22,[40][41][42] Some of our participants issued fatwas themselves. This fits within a development in which imams fulfill tasks because the institutions that provide these in the country of origin are lacking. 16,18,43

Strengths and limitations
Participants were aware that the interviewers were Muslims. We believe that this shared religious identity made it easier for them to speak about the sensitive nature of palliative care. However, our sample predominantly consisted of imams representing transnational organizations. Therefore, one might wonder to what extent our data are personal views or representations of the formal Islamic views and policies of these organizations. We believe this characteristic constitutes both strength and limitation. A strength is that our research provides insight into how imams as representatives of organizations contribute to the shaping of palliative care. A limitation is that is not always clear where personal views were expressed. Conversely, we think that they saw representing normative Islamic views as obvious, as this was linked to their professional identity. Another limitation is that our sample is limited to Turkish imams. Therefore, different results might be observed in follow-up studies including imams from other Muslim minorities.

What this study adds
Our study shares similarities with earlier research among lay-Muslims about end-of-life decision-making. A common denominator is the view that God is omnipotent and disposes over life and death. [44][45][46][47] For some this means that treatment may be withheld or terminated to avoid suffering because God ultimately decides the moment of death, while this is very hard for others since it undermines belief in God's omnipotence to cure. [44][45][46][47] Our findings suggest that imams emphasize God's omnipotence to cure by pushing for maximum treatment. Striking in this context was the impact of fear among participants. Taking medical decisions in palliative care for family members is known to evoke negative emotions, including the fear of interfering with God's plan. [48][49][50][51] It is this fear that motivated participants to refrain from issuing statements about withholding or terminating treatment. This suggests that they view issuing fatwas in such cases as synonymous with becoming decision-makers.
Our findings reveal a gap between palliative care tailored to individual patient needs and an afterlife-orientated approach by imams that stresses the religious responsibilities of all involved. 44,45,52 This is worrisome since research points to unequal access and less favorable outcomes of palliative care among minorities. 52,53 What is needed is tailor-made palliative care embedded within cultural-religious frameworks that meets the specific needs of Muslim patients and their social system. 52 To develop this requires policy and concrete action from healthcare providers to build sustainable relationships with imams and their congregations aimed at working together in the interest of the Muslim patient. 53

Conclusions
The imams' insistence on maximizing treatment in their advice to patients' relatives in medical decision-making in palliative care is intertwined with the fear of being held accountable by God for intervening with His omnipotence and will. As a result, clinical practice may face negative attitudes among Muslims toward proposals to withhold or terminate treatment which are at odds with medical views on good palliative care. To bridge this gap, palliative care policies tailored to the needs of Muslims need to be developed in close cooperation with imams and their congregations. To broaden the understanding of imams' contributions to palliative care, future research should include imams of different ethnic backgrounds.