The balancing of virtues—Muslim perspectives on palliative and end of life care: Empirical research analysing the perspectives of service users and providers

Abstract

In this paper, I will share findings from a qualitative study that offers a thematic analysis of 76 interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains and community faith leaders across the United Kingdom. The data show that for many Muslims, Islam—its texts and lived practice—is of central importance when they are deliberating about death and dying . Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around the virtues of hope and acceptance. The study provides an analysis of these themes in relation to the experiences of Muslim patients and families arriving at meaning making around death and dying and how this interfaces with their interaction with biomedicine and healthcare. The study shows that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim patients and families encounter the healthcare system. The study also describes how healthcare professionals and staff of other faiths and no faith encounter Muslim beliefs and practices, and the challenges they face in interpreting virtues and values rooted in faith, especially when these are perceived to be mutually opposed or inconsistent.

1. INTRODUCTION

With an increasingly multicultural, multifaith and multiethnic population, the role and influence of different cultures, traditions and languages within the predominant biomedical model, in the U.K. National Health Service (NHS) are being recognised. The National Institute for Health and Care Excellence (NICE) in its Quality Standards on End of Life Care for Adults, for example, identifies that the care and information provided to patients and families should be ‘culturally appropriate’.¹ Yet, there is very little guidance and tools available to practitioners who are providing care for a diverse population on how they should provide such ‘culturally appropriate’ care.² Furthermore, there is growing demand for research that is conducted with diverse populations to document and understand their needs, preferences and challenges as they navigate healthcare services.

Reasons for why such research ought to be conducted can be based on the conception that understandings and provisions that are culturally sensitive support autonomy by meeting individual and relational preferences. Better informed and adapted services would also promote distributive justice by mitigating barriers to access services that are often experienced by minority ethnic communities. Arguably also, a deeper understanding of patients and families’ values, beliefs and preferences can also enhance the care given by healthcare professionals through a means of enriching relationship building by mitigating misunderstandings, tensions and anxieties within the shared decision‐making partnership.

This study was designed to enrich existing narratives on palliative and end of life care (P&EOLC) by examining how faith values and virtues of Muslim patients and families are encountered at the bedside. Some of the questions the study was seeking to answer include the following: What influence do the religious understandings of patients and families have on their expectations and understandings around end of life care? And how are healthcare professionals of different faiths and no faith able to identify, understand and meet such needs? This paper aims to summarise some of the key findings of the study conducted and begin to answer some of the aforementioned questions. In particular, it seeks to stimulate a wider discussion around how practitioners ought to provide culturally appropriate care in increasingly diverse populations.

Based on the 2011 Census data in the United Kingdom, one in three members of minority ethnic communities are Muslim, with 43.6% of Muslims being Asian/Asian British, 14.5% being Black/African/Caribbean/Black British, 0.5% being White, 77.1% being Arab, and 8.4% being Mixed or Multi‐Ethnic.³ As such, studying the views and experiences of Muslims in the United Kingdom deliberating about death and dying, offers a valuable lens through which the impact of different cultures, languages and the Islamic faith on P&EOLC can be understood. Furthermore, data show that despite being a relatively young population, the U.K. Muslim population is aging, with those over 65 set to quadruple by 2031.⁴ The expected demographic transition of ethnic minority communities in the United Kingdom over the coming decades means that more research needs to be conducted to understand their views on death and dying as well as their care needs related to P&EOLC. This study also seeks to explore how multiethnic and multifaith perspectives can add layers of complexity and richness to beliefs and practices around end of life care, particularly in relation to values and meaning making around death and dying that can inform and influence healthcare processes and practices.

2. METHODOLOGY

To better understand the views, values and practices of Muslim patients and families as well as healthcare professionals and chaplains, pertaining to end of life care decision‐making in the United Kingdom, an empirical qualitative study was carried out.

2.1. Sampling and participants

Sampling was carried out in London and Birmingham, to maximise the opportunity to study Muslim values in End of Life Care decision making, as these two cities have the highest population of Muslims in the United Kingdom.⁵ Sampling was also carried out in Cambridge, despite the small population of Muslims, to include narratives of stakeholders in a varied socio‐demographic profile.

Given the aims of the study, the following types of key stakeholders were identified as important and included in recruitment:

• Muslim patients and family members.

• Healthcare professionals (doctors, nurses, physiotherapists, psychologists, etc.)—Muslim and non‐Muslim.

• Bereavement staff, funeral service staff, mortuary staff and coroners—Muslim and non‐Muslim

• Chaplains (multi‐faith and/or Muslim).

• Imams and/or Islamic Scholars involved in End of Life Care decision making.

The rationale for sampling these five types of interviewees was because they constitute the five groups most likely to be able to provide insight into the role of Islam and the beliefs, values and practices of Muslims as pertaining to decision‐making within End of Life Care. The reason for interviewing diverse actors, at multiple levels and throughout the pathway of patient and family care, was to allow for an assessment of the multiple relevant perspectives within end of life care in the different contexts. It was also to enable a deeper understanding of the interaction between different stakeholders, such as the complex dynamics concerning healthcare professionals, patients and family members and the interplay of faith based and secular values in such encounters. A purposive sampling method was employed to capture a range of experiences.

Emails were sent systematically to all hospices, in London, Birmingham and Cambridge, listed on the Hospice U.K. website⁶ to recruit hospices and individual participants into the study. An email including a brief of the study was sent via the Hospice U.K. mailing list. Emails were also sent to chaplaincy offices at hospital trusts in the three cities. Once interviews began, further recruitment was carried out via Internet searches (purposive sampling) and emailing of suitable participants as well as recruitment based on the advice of interviewees (snowballing).

Seventy‐six semi‐structured interviews were carried out. This number was based on us being able to interview a sufficient number of suitable individuals within each of the participant categories such that data saturation was reached, that is, until a point was reached beyond which it was judged the addition of new themes was unlikely.

Supplementary Appendix A displays the demographic data and other characteristics of participants. As this was a scoping review, to generate themes, views and experiences of a diverse range of stakeholders, a sample of each category of participants was recruited. The focus of the study was on generating themes specific to and cross‐cutting between groups. The table shows how healthcare professionals such as doctors, bed managers, nurses and support workers, who are Muslim, shared views not only as professionals but also as carers and family members.

2.2. Ethical review

As the study involves direct participation involving human subjects, it has undergone review by the University of Cambridge School of Humanities and Social Sciences Ethics Committee as well as the NHS Health Research Authority (IRAS number: 220682).

2.3. Semi‐structured interviews

As one of the objectives of the study was to investigate whether and how Islam and the beliefs, values and practices of Muslims influence their understanding and approaches to End of Life Care, the semi‐structured interview presented the ideal means of probing and also challenging participants’ views to better understand their reasoning and experiences. Green and Thorogood describe the interview as ‘a conversation that is directed, more or less, towards the researcher's particular needs for data’.⁷

For in‐depth interviews with participants, an open‐ended thematic topic guide was developed (see supplementary Appendix B) to ensure that the same themes were covered in each of the five interview tiers. The guide, however, provided flexibility to ensure that questioning could occur freely and to allow the interviewer to choose the questions appropriate to the context and to enable suitable probing of topics and issues that were pertinent and arose within the interview.

2.4. Framework analysis

A framework approach has been used, to analyse the data, as it has been described as a flexible method of analysis in allowing for both inductive and deductive contributions to analysis. Concepts and themes from the literature were used as pre‐existing theoretical constructs during the analysis of the data (deductive analysis), alongside an inductive approach, whereby themes were identified directly from the qualitative data before re‐visiting the literature.⁸ This method also has the advantage that although in‐depth analysis can take place across the entire data set, the process of coding and charting ensure that the views of each participant remain connected within a matrix.⁹ The data analysis in this study employs the thematic framework analysis method that was devised by Ritchie and Lewis.¹⁰

Semi‐structured interviews were audio recorded and transcribed. Following data collection, a framework analysis approach was employed¹¹. The method I used reflects the framework analysis requirements described first by Ritchie and Lewis who suggest that the framework should ensure that the investigator¹²

• 1.Remains grounded in the data
• 2.Permits captured synthesis—this is reflected in the charting process where verbatim text is reduced from its raw form
• 3.Facilitates and displays ordering—again this is reflected in the charting process
• 4.Permits within and between case searches—the charting process allows for searching and comparisons to be made within and between data sets.

Such a method ensures that the data analysis process is systematic, comprehensive and flexible to enable new ideas to be generated. It also enables refinements and ensures transparency to others. Ritchie and Lewis's method of analysis is one that involves an ‘analytical hierarchy’ which begins with familiarisation of the data or data management followed by the generation of descriptive accounts and finally abstraction through the development of explanatory accounts.¹³

The following describes how I carried out these steps of analysis:

• 1.Familiarisation with the data—This first step was employed to ensure, as primary investigator, I remained close to the data and this involved immersion in the data with repeated reading of field notes, summaries and transcripts, in order to list key ideas, recurrent themes and patterns. I did not code at this stage and instead summarised the key points participants made via a summary sheet for each interview. A selection of the transcripts were discussed with my research team at the Centre of Islamic Studies, during the early stages of the interview period, to enable me to develop an initial systematic reflection of the data.
• 2.Generating themes—A coding scheme was developed by identifying all the key issues, concepts and themes. This was carried out by drawing on a priori issues and questions derived from the aims and objectives of the study, the literature review as well as emergent issues raised by the participants. The coding framework was discussed and reviewed with research colleagues at the Centre of Islamic Studies as well as at research meetings with key stakeholders. During the coding process, inductive codes, or those emerging from the data were added to the coding framework if they described a new theme or expanded a predetermined code.
• 3.Indexing—The themes in the data were then used as labels for codes, which were then applied to the whole data set. This was carried out systematically to ensure all the data were accurately coded using NVIVO version 10. The process of generating themes and indexing continued until the point of data saturation. Data saturation was assessed at the point where ‘no new information or themes’¹⁴ were observed in the data. After this point, only indexing continued until all of the data had been coded. Please see supplementary Appendix C for a complete list of codes used.
• 4.Charting (descriptive accounts)—After having coded the data according to the identified themes, the data was then charted to assist in the generation of descriptive accounts where verbatim text was reduced from its raw form. This involved a rearrangement of the data according to the thematic content by comparing data within and between interviews. Once judged to be comprehensive, each main theme was charted by completing a matrix where each interview has its own row and columns representing the subtopics. These charts contain summaries of data that can be referenced back to the original transcript. This enabled a presentation of the range and diversity of views. Key quotes were recorded and certain themes were listed in the participants’ own language. This was then followed by a refinement of categories to address overlap and to develop typologies that assisted in the collation of the related themes helping to divide and unite the participants’ views. A schematic of the coding framework is illustrated in supplementary Appendix D.
• 5.Mapping and interpretation (developing exploratory accounts)—The charts were then used to examine the data for patterns and connections. This stage was influenced by the original aims and objectives of the study as well as emergent issues from the data. Here, patterns in the data were identified to then derive explanations of participants’ experiences and views. An account was developed to explain reasons behind the differences and similarities captured between and within participant accounts to arrive at an understanding of Muslim perspectives on End of Life Care. For example, recurrent themes were identified and the reasons for these were explored. Explanations and reasoning given by participants were also studied in order to distinguish these from my own analysis as the investigator (reflexivity). Professor Gurch Randhawa also reviewed a sample (10%) of transcripts and the coding framework for external validation.

2.5. Data analysis and the process of developing the main themes for this paper

Having analysed the literature and studied the transcripts using a framework analysis, I identified two main themes that helped me organise the insights emerging from the data pertinent to Muslim values and end of life care decision‐making. Although the data could have been presented in multiple ways and I drafted several versions of the data tables, the two main themes outlined below ultimately functioned best as organising concepts for the data I gathered from the participants I interviewed.

As supplementary Appendix C (complete list of codes used) shows the study has been incredibly rich in providing insights ranging from participants’ views on interventions such as organ transplantation and withholding/withdrawal of life sustaining treatment, the array of stakeholders involved in decision‐making to the role and importance of faith‐based virtues and values at the end of life. Although other publications resulting from this study will focus on former themes, this paper will pay particular attention to the role of virtues in end of life care decision‐making. This is because themes such as ‘hope’ and ‘acceptance’ were not limited to any particular group and emerged as being important across the data set. As such, the section of data analysis that is relied upon for this paper focusses on the generation of cross‐cutting themes relating to virtues that have emerged between participant categories rather than the generation of category specific case studies.

The two main themes and subthemes relevant to virtues are as follows:

• (1)End of life care decision‐making in modern healthcare systems: Values, norms and ontologies:

• (1a)Encountering cultures and traditions at the bedside.

• (1b)Ensuring patient centred care.

• (2)Values, beliefs and practices in End of life care decision‐making: Sources, languages and authorities:

• (2a)Understanding virtues.

• (2b)Negotiating virtues: An understudied moral paradigm.

Whilst these themes emerged as being important from my analysis of participant accounts, they also provided a framework through which the data and discussion from this paper could be related back to the aims of the research in addressing how faith commitments are encountered within the palliative and end of life care contexts. ^{15 16}

2.6. Analysing the role of faith

As the focus of the study was on Muslim perspectives on End of Life Care, participants were chosen and asked about their experiences and understandings of the impact of Islam and the beliefs, values and practices of Muslims within End of Life Care decision‐making. Discussions with some participants who were not Muslim (e.g., doctors, nurses and multifaith chaplains) did inevitably include descriptions of their own faith commitments and how these manifest in their deliberations and understandings of end of life care. Although such accounts were incredibly rich and helpful in providing an important backdrop to participants’ narrative accounts, I did not employ such descriptions to develop a comparative analysis of different faith accounts. The latter would be very valuable, however, was outside the scope of this study. Thus, within the presentation of the data, the faith of a participant is only listed in cases of Muslim participants as all other participant accounts were analysed primarily on their role (as nurses or multifaith chaplains) and not their religious background.

2.7. Presenting the data—How quotes were chosen

For evidencing the findings and illustrating perspectives of participants,¹⁷ quotes were carefully chosen for presentation in this chapter. However, in keeping with the ‘aesthetics and ethics’¹⁸ of qualitative research reporting, as some of the participant explanations were lengthy, quotes had to be selected that were relevant for each section and sometimes edited further for brevity. I was careful however to select and edit quotes that retained the overall message of each transcript from which they were extracted. I kept detailed memos during the coding process to assist the selection of appropriate quotes.

2.8. Limitations of the methodology

There were numerous limitations in relation to the methods employed for the empirical study. Sampling was restricted to sites in London, Birmingham and Cambridge. There are a significant number of Muslims in other cities across the United Kingdom including Leicester and Bradford. Future studies in such areas will help to add to the findings elucidated through this data set. Also, interviews with 75+ participants cannot be representative of all the myriad views and complexities encountered within end of life care, which does limit our ability to generalise the findings from this study.

Another limitation was that, participants were not sent the topic guide before the interviews. The information sheet provided a broad outline of the research objectives and methods; however, the precise questions and topics were not included. This was to enable me to document participants’ own description and analysis of events and an explanation of the practical deliberations they undertake in a more organic, unrehearsed, manner. It was to also encourage participants’ to offer a more diverse range of issues than was included in the interview guide. I was also concerned that sending the topic guide in advance may have led to bias in the data collection. However, this approach meant that, given the time constraints of the interview, it took some participants a long time to connect the questions they encountered with the underlying ethical problems. Although many of the participants were doctors, nurses and chaplains and had had some training in ethics, few were ethicists and so some found it difficult to articulate an account of the ethical problems they encountered and how they addressed these. However, in such cases, topics from the interview guide were used to ascertain firstly whether the participants had faced a similar problem and if so to provide them with the opportunity to elaborate on the experience. Often, this method was successful in drawing out participants’ own views and values that emerged from carefully disentangling the challenges they had faced. Future research may combine blinded topics or questions as well as some questions that participants may reflect on prior to the interview so they feel less pressured by the time constraints.

Due to the practical challenges of recruiting patients at the end of life, a small sample was recruited (five participants). However, this was deemed sufficient as data saturation was reached and many other participants’ views, such as carers and professionals, cohered with the views and experiences of patients.

3. RESULTS AND DISCUSSION

A key finding from the study was how healthcare professionals encounter faith at the bedside and in particular the challenges they face when patients and families express commitments to concurrent virtues of hope (that their life will continue for as long as it can) and acceptance (that their life is coming to an end). Oftentimes, healthcare professionals misunderstood such commitments as an indication of patients being in denial that they are dying. The following provides an analysis and discussion of the data around the themes of hope and acceptance.

• 1. End of life care decision‐making in modern healthcare systems: values, norms and ontologies

An analysis of 76 interview transcripts points primarily to the importance of faith perspectives and practices for Muslim patients and families. This overarching finding is based on interviews with patients and family members and also healthcare professionals sharing their experiences of encountering deep faith commitments at the bedside from patients and families alike. Many participants spent a significant amount of time detailing how their own faith or the commitments of those they look after impact understandings of death, dying and decision‐making at the end of life.

• (1a) Encountering cultures and traditions at the bedside

One of the patients interviewed as part of the study spoke emotionally about the importance of his faith. Despite the hardship he was experiencing in having been diagnosed and living with a terminal illness, he deeply believed and relied on God and his faith for his abilities. He was diagnosed with multiple sclerosis and when he was interviewed was bedbound with limited mobility and a poor prognosis. He explained that despite his condition, he considered his existing faculties and capabilities as being bestowed by God:

The faith that I hold in Allah and the faith I hold in my own religion and our function is paramount and very important. It's been very good to me. It's difficult to describe how good it's been. It's been very good. Yeah. It's been good to me with regards to my… Enabling me to use my limbs and controlling my limbs. It's been very good to me. It's been good for my speech as well. That's it, really. Yeah.

(Interview 70a, Muslim patient, London)

Despite facing immense adversity, he spoke of the gratefulness (shukr) he felt towards God and deep reliance in his faith to deal with his condition. His perspective on dying and decline reveals a stark contrast to emerging narratives that consider the end of life and death as a ‘bad outcome’ or a process to be circumvented.¹⁹

Many Muslim patients and families described how for them death is a part of life and from God. They thus do not seek to evade death rather want to ensure that dying and the process of death is harmonious with their faith commitments.

If it comes I pray to Allah, please give me comfortable death. Comfortable death… So, anybody who is born, is to die. He has to have a taste of death, and we pray that Allah gives us a kind death.

(Interview 48, Muslim patient, London)

Allied health professionals such as multifaith chaplains also described how they encounter faith traditions at the bedside:

…the opportunity to recite verses from the Quran is very important to somebody who's dying. People should have access to things like prayer beads to hold and to use for prayer. Maybe they would like to have some water from Makkah, something like that, which is important to them in their faith.

(Interview 12, Chaplain, London)

Another chaplain described how faith plays a role in providing meaning making at the end of life for Muslim patients and families:

Faith is not about providing answers, faith enables one to live with the questions.

(Interview 19, Chaplain, London)

One funeral service provider also described how he encounters Muslim families and as a Muslim himself understands his and their faith commitments and beliefs about death and dying:

Generally the discussions are around understanding that you can't change what's happened and also you don't know if it's the worst case. It could be a good thing for you or for that person. Again, for (believers) we understand that it's in Allah's hands and so it marries up with faith and Islamic perspective perfectly.

(Interview 21, Funeral Service Provider, London)

A senior palliative care nurse also described how Muslim patients and families she encounters at the end of life rely deeply on God:

I think that, for me, their faith… I'm trying to think how to explain it for me. Their faith adds an additional dimension for me because of their faith with regards to their beliefs and that the decisions that are made are by a great being.

She spoke of her understanding of belief in God (taqwa) that she witnesses encompasses reliance that is manifest in patients and families believing that decisions are made by God.

A daughter who spent many months caring for her mother at the end of her life explained:

I know that life is given by God, and Allah does whatever he needs to do.

(Interview 51, Muslim family member, London)

She explained how despite the hardship she faced in witnessing her mother's illness and being eventually bereaved, she trusted and had faith in God and God's will.

A Muslim physician whilst describing the faith of patients and families he cares for, explained his own faith and reliance in God when encountering challenges in his personal and professional life:

It's not the material loss that's the thing at hand. It's how I call upon my God and the trust. The faith that I have in him. Having that deep in my heart… Having that reliance on God is what will bring the success and what will help other material problems.

(Interview 43, GP, Birmingham, Muslim)

His perspective reveals a similarity in the steadfastness in faith and belief in God (taqwah) and patience (sabr) expressed by participant 70.

The data show that patients and families describe faith commitments that not only include fulfilling ritualistic requirements around death, such as offering of prayers,²⁰ but also an overarching spiritual process of approaching, understanding and experiencing life to its absolute end. This spiritual process for them involves a deep cultivation of moral character and virtues, based on teachings from the Quran and the Prophet Muhammad. The patient, from interview 70, whose quote is presented above, offered an explanation of what it means for a Muslim to die well: to leave this world with steadfastness in faith and belief in God (taqwah) that is underlined by patience (sabr) and gratefulness (shukr). His insights and perspectives from other Muslim patients and families reveals a distinct account of what it means to have a ‘good death’. It is not limited to a physical experience but one that is deeply spiritual and rooted in faith. The patient from interview 48 also provided his perspective of taqwah or reliance in God in understanding that everyone who is born is to die and that for him God alone can ensure a ‘comfortable death’.

The views of the range of participants presented here not only reveal the deep reliance on faith‐based beliefs, within Muslim communities, to withstand but also understand hardship.

• (1b) Ensuring patient‐centred care

Given such understandings and commitments of Muslim patients and families, many Muslim chaplains who were interviewed explained how they accommodated for such beliefs. They also described how understandings of Islamic beliefs and values informed how they cared for patients and families. For example, a Muslim chaplain explained how he relied on the aforementioned Islamic beliefs and virtues to administer to the dying as well as grieving families:

There's certain principles that I use which is from the Hadith, where life is temporary, the hereafter is eternal. Patience, reward for patience, and everyone belongs to God.

(Interview 1, Muslim chaplain, London)

He spoke of values and virtues shared by Muslim patients and families, such as, taqwah and sabr. He also spoke of the ontological reality understood by Muslim patients and families as they arrive at meaning making around death and dying. They believe that this earthly life is temporal, and that death provides a transition into an eternal afterlife. Furthermore, that it is from God that life is bestowed and to Him it is returned.

A community Imam who is relied upon to provide pastoral and spiritual support to patients and families also described how he imparts teachings from the Quran including virtues such as patience:

I also have a few words…recitation of the Quran (and) give them the advice of patience… There are clear verses in Quran…always think positively. And you might say, maybe a miracle happen.

(Interview 27, Community Imam, Cambridge)

A funeral service provider also explained that for the communities and families he looks after they rely on Islam's normative sources, the Quran and Hadith to provide meaning and guide decisions during terminal illness and after death:

Islam illness, dealing with it… it's constantly throughout the Quran and Sunnah.

(Interview 21, Funeral Service Provider, London)

One chaplain spoke not only of the reliance families place on Islamic theological and moral constructs for coping but also how she relies on these very same resources:

For example, a mother losing a child and there's various texts in the Quran about a woman if she loses a child, that she will go to Jannah (Paradise) and I think that helps me to think, ‘Alhamdulillah’ (Praise be to God). It's just so hard to understand how people can go through such terrible things that they go through, but still I feel… I know that I don't have all the answers and I know that I can't understand everything, but then that comes down to faith at the end of the day, and thinking, ‘Well, I can't overanalyze or overthink too much’. Put my faith in Allah that it's part of His bigger plan and then just pray for these people that are suffering.

(Interview 9, Chaplain, London, Muslim)

She spoke in detail about the hardship faced by parents, particularly mothers on losing a child. She also described how they relied on their religious beliefs to make decisions about what to do and also how to cope by relying on virtues such as sabr and shukr (gratefulness). She also explained how she relied on these same virtues when coping with the strain of her work through expressions such as ‘Alhamdulillah’ which is an expression of both virtues sabr and shukr and as a composite representing an acceptance of God's will.

Such virtues, values and beliefs can be traced to Islam's normative sources, the Qur'an (revelation from God) and the Hadith (tradition of the Prophet Muhammad). Given the reliance on and reference to Islam's normative sources, by interview participants, a brief analysis of a sample of these sources, relevant to virtues and meaning making around the end of life, is presented here.

For example, a verse from the Qur'an, which many participants explained is recited once a person has died, elucidates the ontological understanding from the Islamic perspective of the nature of life and coming into being as well as dying and the nature of death:

Indeed we belong to God and indeed we return to Him.

(The Holy Quran, Chapter 2 Verse 156)

The verse reveals God as the originator of life and commitments to this verse provide an understanding of the views and pledges offered by Muslim patients and families presented in the previous section. Furthermore, examples from the Prophetic tradition, reveal the embodiment of such beliefs. The Prophet Muhammad's life is replete with death, loss and bereavement. Muslims look to his tradition as a means of understanding the Qur'an. The Islamic traditions of morals and ethics or adab (virtue) and aqhlaq (proper conduct) rely on these two sources. Both offer not a simple read out of ethical principles, rather a practical way of living. For example, the concept of sabr in adversity is mentioned repeatedly in the Qur'an and Hadith. Its frequent mention signifies life as being a test, replete with adversity and challenges. For a believer, the example of the Prophet offers a touchstone from which to navigate such hardship.

For example, a Hadith describes an instance in the Prophet's life where he learns of his grandson's imminent demise. He dwells not on his own grief but immediately offers advice and support to his daughter:

Once while I was with the Prophet and… there came to him a messenger from one of his daughters, telling him that her child was on the verge of death. The Prophet told the messenger to tell her, ‘It is for Allah what He takes, and it is for Allah what He gives, and everything has its fixed time (limit). So (she should) be patient and look for Allah's reward’.

Sahih al‐Bukhari Vol. 8, Book 77, Hadith 599, !https://sunnah.com/bukhari/82/8

The narrative continues revealing Prophetic lessons on how to understand grief:

She sent word to him adjuring him to go to her. So he got up and went… The boy was lifted up to the Messenger of God, with the death rattle sounding in him, and his eyes filled with tears. The Prophet's companion asked: ‘O Messenger of God, what is this?’ he said: ‘This is compassion which God has created in the hearts of His slaves. God has mercy on His compassionate slaves’.

Sunan an‐Nasa'I, Book 21, Hadith 51, !https://sunnah.com/nasai/21/51

On initial reading, it may seem that the two parts of the narration are contrary. It is crucial to read the two side‐by side to appreciate both the Prophetic lessons but also his humanity and God consciousness. From afar, he is offering consolation to his daughter, yet when faced with his dying grandchild he is overcome and displays the experiences of human loss through visceral grief. Yet, when the Prophet's companion asks regarding the tears filling his eyes, the Prophet speaks not of his own grief and loss, rather he explains that such an emotional response was also from God—that grief is compassion from God and offers a means of being subject to God's mercy. Such narratives reveal a complexity connecting beliefs, virtues and meaning making around death and dying. That those living and facing loss are aware that even the emotional struggle they bear is from God and although extremely fraught are still reliant on God. It also points to the Prophetic example of how loss and its expression are a mercy from God and a means of reconnecting with Him.

This concurrent loss and reliance marks the Muslim embodiment of the virtue of acceptance and uncovers behaviour and understanding related to death and dying that is under researched. Acceptance of death and viewing bereavement as a means of mercy do not occupy predominance within the U.K. linguistic, cultural and healthcare landscape on mortality. The expression of acceptance through virtues such as sabr and shukr not only offers valuable insights into how Muslims as patients and families but also into how healthcare professionals cope with and understand loss.

• 2. Values, beliefs and practices in End of life care decision‐making: Sources, languages and authorities

What the data also show is that corresponding to the virtue of acceptance, embodied by Muslim patients and families, is the virtue of hope. Healthcare professionals interviewed during the study explained how they struggled to navigate this commitment to hope and how it manifests in the clinical encounter.

• (2a) Understanding virtues

Hope, from the perspectives of Muslim patients and families interviewed during the study, is also rooted in taqwah. Underlying hope, is reliance in God that resonate with beliefs in the power of God and miracles. For example, one of the palliative care nurses explained how she encounters Muslim beliefs around miracles and hope:

That people either think you know everything or you know nothing, and you've actually got some (laughing)… that can be quite a lot of pressure when it's your mom or dad can't it? Yeah when you just want to be with mom or dad… Still hoping for cure when it's evident it's not going to happen. Living on two levels (of) duality really. Pretending everything is fine, and I can still do everything, I can still drive to the mosque and I can still… They want to be back and well so they do it. ‘I'm well, thank you’, so it's denial. It's taken me years to realise this bravado, but they do know. They do know ultimately, but that's just how they are coping… Sometimes (they ask): ‘why are you here, what are you doing here? I don't need you’. I'm seeing a lot of elderly caring for spouses… Hoping for Allah, hoping for… who knows. I've had… (a patient) she said: ‘Do you believe in miracles?’ You know? Sometimes there is that hope, we don't give up hope. You can't wrestle away, take away that hope. That is people's coping mechanism isn't it?

(Interview 11, Nurse, Hospice, Birmingham)

The participant spoke of the difficulty in being able to understand and accommodate for patients’ and families’ commitment in hope—a hope for a cure, a miracle—that is reliant on God. She explained that although hope can be integral to people's coping mechanism, she was also committed to ensuring they had had the opportunity to prepare for their end of life:

You want to stay that path of preparing them as well, in case there are things they want to do or need to do… Mostly families, negotiating with families and making sure they know where they are at. So, if there is anything they need to do that they are prepared. It varies doesn't it?

(Interview 11, Nurse, Hospice, Birmingham)

Her experience and that of many other healthcare professionals interviewed during the study highlight the challenges faced by practitioners in understanding the beliefs and commitments of Muslim patients and families based on the virtue of hope. The nurse spoke of, in the former quote, the challenges she faces as a healthcare professional in encountering the expectations of patients and families who may on the one hand seek what professionals ‘know’ but concurrently also reject the support and information offered. Their steadfastness and hope may be perceived by healthcare professionals as a coping mechanism or even a manifestation of denial.

Analysing the virtue of hope, from the perspective of Islamic sources reveals a more intricate process of reasoning. For example, the Prophet said three days before his death:

None of you should court death but only hoping good from God.

Sahih Muslim, Book 53, Hadith 98, !https://sunnah.com/muslim/53/98

On another occasion, he drew a few lines and explained that

This is (man's) hope, and this is the instant of his death, and while he is in this state (of hope), the nearer line (death) comes to Him.

Sahih al‐Bukhari, Book 81, Hadith 7, !https://sunnah.com/bukhari/81/7

These traditions of the Prophet sit alongside those of the virtues of patience and acceptance. His teachings outline a complex nexus of moral reasoning and understanding around death that is not delineated by principles and consequences, rather it involves a deep deliberation involving hope in and for life, whilst acknowledging that this very hope resides alongside the inevitability of death. His teachings speak of the human condition and the metaphysical tension of hopeful existence whilst remaining mindful and committed to one's imminent departure. These traditions offer a contrast to the views of Sautoy outlined in footnote 20. The Islamic tradition impresses not an anxiety or ‘price’ on existence, rather the certainty of death is concurrent with the hopefulness of life. This multi‐layered and nuanced consideration of meaning making around death that is rooted within the Islamic normative sources may offer an explanation of some of the views and virtues expressed and embodied by Muslim patients and families.

• (2b) Negotiating virtues: An understudied moral paradigm

From the data and interviews, the deliberations of healthcare professionals help to elucidate the resources they rely on to negotiate patient care. Such decisions are of course dependent on biomedical parameters such as the patient's pathophysiology, but it also involves ethical reasoning. The latter predominantly comprises elements of secular bioethical evaluation, including an appraisal of moral duties, principles and consequences. Although virtue ethics is a cornerstone of secular bioethics, the data reveal that healthcare professionals may be unfamiliar or unaccustomed to deliberating about clinical decisions through a virtue ethics lens.

Furthermore, in medical practice, even Muslim practitioners expressed difficulties in understanding the commitments of Muslim patients and families and the embodied virtues of hope and acceptance:

I think it's hope. It never goes away with these guys. There was another chap. He was from Pakistan, Muslim. Huge tumour, he was dying. And then got a pneumonia, got better. We treated it. And then got a second one. I talked to the family. I said, ‘Look, this doesn't end’. He said, ‘No. Please try, please try. It isn't a last hand. The end is in the hands of Allah. So, what we expect of you is to try. We know’, I'll tell you their words. They said, ‘We know he is dying. We know you cannot save him completely. But right now you can treat his infection’. So for them, even an additional day if the antibiotic is given was fine. And there is no regrets if he dies that you've done your best. But not giving antibiotic is not doing your best. Because if there is something you can… treat… So, he was relatively unwell at the time, but, you know, in between he got better and he said, ‘Yeah, I want to be treated’.

… Because I think it comes from their faith that life and death are in Allah's hands. And so you have nothing to say about it. So if there is something you can do, you should do it. And then there is always this concept of shifa (cure) and miracle, that you never know. Allah can do anything, right? We are taught that. And so is there going to be a… So, I think this is all hope. They never let go of hope.

(Interview 56, Palliative Care Consultant, Muslim, Hospice, London)

The palliative care physician spoke of his experience of caring for Muslim patients and families which represented an unrelenting hope but also a compelling acknowledgement of the patient's imminent demise. That death was inevitable did not relinquish their present hope. He and other professionals conceded that encountering such commitments is a challenge in practice as it may mean that patients and families request intervention in contexts where this may be considered equivocal or even inappropriate from a medical perspective. Many participants also spoke of anxiety and frustration at not being able to fully understand their patients’ perspective and feeling unsure of whether they provided them the best possible care.

That healthcare professionals may struggle to recognise and understand commitments to virtues and their implications for decision‐making amongst patients and families, points to a potential training and education gap. The relevance of virtue ethics in ethical decision‐making also points to a historical tension in bioethics. Over recent decades, there has been growing criticism of popular approaches to bioethics, namely consequentialism and deontology. Elizabeth Anscombe, for example, argued that such methods limit our moral vocabulary and hasten us towards thinking about what we should do rather than how we should live.²¹ Anscombe goes so far as arguing that ‘we should stop doing moral philosophy until we gain some clarity about philosophical psychology’.²² Such critique of consequentialism and deontology has led to a renewed interest in virtue ethics.²³ Despite such revitalisation of virtue ethics, experts in Ars Moriendi or ‘the art of dying’ are also calling for an appraisal of modern bioethics and a reinvigoration of virtue ethics:

…any framework for dying well will require bioethics to take serious stock of the limits of its own formal, procedural methodology. Those committed to the project of dying well concur that such a project is a virtue‐based project. If bioethics is to contribute to this project, it will have to re‐invent its own ethical framework to incorporate properly a virtue methodology.²⁴

Another challenge that is encountered by healthcare professionals is understanding the concurrent reliance on multiple virtues that may be perceived to be in opposition. That these virtues coexist in the hearts and utterances of Muslim patients and families may point to why healthcare professionals express and experience the discomfort and confusion captured by the data. Furthermore, they may consider concurrent reliance on hope and acceptance as paradoxical expectations where Muslim patients and families may be accepting of death yet may want to ensure that steps are taken to curtail disease, sustain treatments and support life. The study reveals that although the faithful accept death as a means of reuniting with God, these beliefs are juxtaposed with their theological commitments to life.

St Thomas Aquinas spoke of virtues as being a moderation of two vices,²⁵ for example, courage being the balance between cowardice and rashness. Descartes explained in his ‘Passions of the Soul’ that hope is poised between despair and brashness or overconfidence²⁶ and that hope cannot coexist with despair. Relying on such eminent examples, we can conjecture that acceptance resides between denial and fatalism or defeatism. The bioethical architecture built on such sources provides an explanation of how to arrive at virtuous understandings and behaviour from the extremes of two vices. Yet the concurrence and balancing of virtues require that we return to Anscombe's call for a philosophical psychology.

The data from this study show that for Muslim patients and families, the virtues of hope and acceptance not only coexist but are integral to their meaning making around death and dying, inform what they consider to be a ‘good death’ and govern the care they seek and expect from the healthcare professionals they encounter. What their experience shows is that, we need greater acknowledgement of the role of virtues in medicine and healthcare and that virtues need not be considered simply the poise of two extreme vices, nor a linear progression, rather that virtues like hope and acceptance ought to be understood and kept simultaneously furious.

The data and discussion here, add to existing literature on social and cultural experience of ill health and dying²⁷ and contributes to a significant lacuna within this body of knowledge—the experiences and views of Muslim patients and families and those that have experience of caring for them. It complements work by Ahmad Raghab whose expert account of ‘Piety and Patienthood in Medieval Islam’²⁸ describes the pietistic tension between virtues, that embody Islamic ideals. The account here reveals how such religio‐cultural and social production of meaning making around illness, death and dying persists within Muslim families and societies today. The data also exemplifies how virtues as understood, expressed and embodied by Muslims is an active and not a passive undertaking.²⁹

The analysis means that the Islamic paradigm of negotiating and embodying virtues is distinct from the predominant bioethical account. Within the biomedical context, practitioners seek to distil decision‐making towards a positive and negative valence of virtue or towards a singular virtue. Multidimensional constructs of virtue are underdeveloped within the predominant bioethical discourse. Here, the data show that Muslim conceptualisations of virtues have creative tension embedded within them where the theological commitment to taqwah instils both hope and acceptance. It means that hope and acceptance cannot be separated as they lie within the domain of a single construct, taqwah. Nor can taqwah be understood as a single entity without its sub‐domains of hope and acceptance. What this means is that the singular psychological state of taqwah enables the co‐existing of two or even multiple virtues and that there may not necessarily be a balancing or trade‐off of different virtues, rather that at different times, different aspects of taqwah are manifest.

For Muslim patients, these internal psychological states, meaning and reaction to circumstance is crucial for healthcare professionals to understand. It will help provide much needed ‘illness narratives’³⁰ from a poorly understood and under researched community. What it also presses is a tentative argument for suitably adapted chaplaincy for Muslim patients and families. That they rely so critically on theological meaning making means that decision‐making for them and an understanding of a ‘good death’ is vitally centred not only on biomedical knowledge and practice but also on religious knowledge and practice. Robust investment in chaplaincy training and staffing within the United Kingdom may help to provide much needed moral space for patients and families to deliberate their internal psychological states with experts. It would also mean that chaplains can offer much needed support to healthcare professionals seeking to better understand the needs and experiences of the patients and families they care for.³¹ Although some would argue that decision‐making ought to be the purview of the patient and doctor alone, the account here reveals the nuance and expertise required to sensitively navigate the expectations and concerns of Muslim patients and families. It means that experts in religious knowledge and language ought to be embedded more proactively in informed consent processes and decision‐making for Muslim patients and families. It also means that existing methods of addressing knowledge and training gaps such as toolkits and training may not be sufficient nor appropriate for encouraging and supporting direct conversations between healthcare professionals and their patients, especially if they need to heavily centre on the pietistic tension described here. Healthcare professionals ought not to have the encumbrance of acquiring or navigating such nuanced expertise. Rather, the domain of chaplaincy that affords such expertise should be better resourced and called upon.

4. CONCLUSIONS

The data and analysis presented here reveals how biomedical practice relies not only on science but also ethics. Within the United Kingdom, ethical deliberation is gleaned not only from the perspectives of healthcare professionals but also from patients and families. That patients and families rely on a religious, social and cultural architecture for meaning and decision‐making, mean that they offer a rich and important locus of study. Here, the data show that the study of Muslim patients and families reveal a complex moral nexus of virtues that coexist and that their experience adds layers of complexity and richness to the ethics architecture. The analysis reveals that the Islamic paradigm of negotiating and embodying virtues is distinct from the predominant bioethical account where virtues co‐exist within psychological states. The negotiation of such commitments require careful and expert consultation that can be offered by chaplains. The account here points to a need for more investment in chaplaincy training and staffing within the United Kingdom to provide a much needed moral space for patients and families to deliberate about their internal psychological states with experts.

CONFLICT OF INTEREST

The author declares no conflict of interest.

Supporting information

Supplementary information.

Biography

Dr Mehrunisha Suleman is the director of medical ethics and law education at the Ethox Centre, University of Oxford. She is a medically trained bioethicist and public health researcher, whose research experience spans healthcare systems analysis to empirical ethics evaluation. Her research interests intersect global health research ethics and clinical ethics particularly where religious and cultural views and values of patients, clinicians and researchers are pertinent. She has extensive outreach and engagement experience, including working with minority groups and diverse sectors across the United Kingdom and globally.

Suleman, M. (2023). The balancing of virtues—Muslim perspectives on palliative and end of life care: Empirical research analysing the perspectives of service users and providers. Bioethics, 37, 57–68. 10.1111/bioe.13109