Muslim Values and End-of-Life Healthcare Decision-Making: Values, Norms and Ontologies in Conflict?

Suleman, Mehrunisha

doi:10.1007/978-3-030-53801-9_8

Mehrunisha Suleman¹⁹

Part of the book series: Philosophy and Medicine ((PHME,volume 137))

204 Accesses

Abstract

Through an empirical study of the experiences, practices, and moral deliberations of healthcare users and providers, end of life care offers an acute lens through which the juxtaposition of Islam and biomedicine can be researched. Muslim beliefs, processes and practices in relation to death, dying, and remembrance reveal a deep commitment to a metaphysical reality independent of empirical knowledge. Within biomedicine, by contrast, empirical methods such as randomised controlled trials, meta-analyses, and the establishment of evidenced based medicine predominate as the sciences and tools of knowing and practicing. This chapter will offer a summary of a qualitative study carried out involving 70+ interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains, and community faith leaders. Themes related to the integration of biomedical knowledge, such as the use of scientific data, and theological understandings of Muslims about death and dying within decision-making will be presented. There will be a focus on the role of these two sources of knowledge and understanding within end of life care decision making, types of tensions that arise when these sources interact, how such conflicts are resolved, and the prevailing hierarchy between the sources, where one is dominant and the other secondary. Overall, the study reveals not a hierarchy but a synchronicity between Islam and biomedicine in end of life care decision-making. Normatively, for Islam and Muslims, such synchronicity emphasises a growing need for experts who are able to adequately navigate the two spheres of knowledge, understanding and practice. This dual expertise will enable appropriate translation of values, beliefs and practices of faith alongside the evaluation of scientific data and deliberations of clinical goals.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution

Chapter: USD 29.95; Price excludes VAT (USA)

eBook: USD 109.00; Price excludes VAT (USA)

Softcover Book: USD 139.99; Price excludes VAT (USA)

Hardcover Book: USD 139.99; Price excludes VAT (USA)

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

1.
Engel (1977): 129–136. ‘Biopsychosocial’: ‘bio’ here refers to biological components, such as age, gender or genetics. ‘Psycho’ refers to psychological components, such as thoughts, emotions, or beliefs. ‘Social’ refers to factors such as family circumstances, cultural influences or environmental factors.
2.
Stange (2010): 100–107.
3.
O’Neill (2002).
4.
Heath (2006): 846–847.
5.
Frosch and Kaplan (1999): 285–294.
6.
Sackett (2005), 2:3.
7.
See: www.cochrane.org. The charity was formed in 1993, in the UK, to facilitate systematic reviews of randomized control trials in healthcare.
8.
The National Institute for Health and Care Excellence (UK) defines ‘randomised controlled trial’ as: ‘A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group (the experimental group) has the intervention being tested, the other (the comparison or control group) has an alternative intervention, a dummy intervention (placebo) or no intervention at all. The groups are followed up to see how effective the experimental intervention was. Outcomes are measured at specific times and any difference in response between the groups is assessed statistically. This method is also used to reduce bias.’ See: https://www.nice.org.uk/glossary?letter=r.
9.
Good et al. (2014): 2–16.
10.
Kettani (2010), 1387–1390.
11.
Mahdi et al. (2016): 403–421.
12.
Padela et al. (2012): 708–715.
13.
Gaveras et al. (2014): 1–11.
14.
Ali (2015), 26.
15.
See: https://www.hospiceuk.org/about-hospice-care/find-a-hospice.
16.
Green and Thorogood (2009), 95.
17.
Gale et al. (2013): 1–8.
18.
Ibid.
19.
Ritchie and Lewis (2003).
20.
Green and Thorogood (2000), 114–116.
21.
Ritchie and Lewis (2003), 56.
22.
Ibid.
23.
NVivo version 10 is a qualitative data analysis software used by researchers working with rich text-based data where the data can be systematically coded, searched and analysed. This is available from QRS International: http://www.qsrinternational.com/nvivo/support-overview/downloads/nvivo-10-for-windows
24.
Guest, Bunce, and Johnson (2006): 59.
25.
Chenail (1995): 1–9. See also, Sandelowski (1998): 375.
26.
Sandelowski (1994): 479–482.
27.
Ibid.: 480–81.
28.
On the difficulty of defining death, see Chap. 9, ‘The Intersection between Science and Sunnī Theological and Legal Discourse in Defining Medical Death,’ by Rafaqat Rashid in this book.
29.
Kübler-Ross and Kessler (2014).
30.
Abeyta et al. (2015): 973.
31.
Brinkman-Stoppelenburg et al. (2014): 1000–1025.
32.
Detering et al. (2010): 1.
33.
Brinkman-Stoppelenburg et al. (2014): 1001.
34.
Illich (1974).
35.
On the theological discussion in the Muslim tradition of illness being seen as a ‘test’ from God, see for example, Chap. 3, ‘The Piety of Health: The Making of Health in Islamic Religious Narratives,’ by Ahmed Ragab in this book.
36.
The story of the trials and patience of Prophet Job (Ayyūb) appears, for example, in the Qur’an 21:83–84 (al-Anbiyāʾ) and 38:41–44 (Ṣād).
37.
Sakrat al-mawt (sing.) or sakarāt al-mawt (pl.), sometimes translated as ‘in the throes of death’ is a Qur’anic term referring to the unconscious moment when one is about to die. This is based on the Muslim understanding that death causes suffering and agony at the point when the soul is leaving the body, and there is no escaping this condition. See Qur’an 50:19 (Qāf).
38.
Abeyta et al. (2015): 973.

References

Abeyta, Andrew A., Clay Routledge, Jacob Juhl, and Michael D. Robinson. 2015. ‘Finding Meaning Through Emotional Understanding: Emotional Clarity Predicts Meaning in Life and Adjustment to Existential Threat.’ Motivation and Emotion 39 (6): 973–983.
Google Scholar
Ali, Sundas, ed. 2015. British Muslim in Numbers: A Demographic, Socio-economic and Health Profile of Muslims in Britain Drawing on the 2011 Census. London: Muslim Council of Britain.
Google Scholar
Brinkman-Stoppelenburg, Arianne, Judith A. C. Rietjens, and Agnes van der Heide. 2014. ‘The Effects of Advance Care Planning on End-of-life Care: A Systematic Review.’ Palliative Medicine 28 (8): 1000–1025.
Article Google Scholar
Chenail, Ronald J. 1995. ‘Presenting Qualitative Data.’ The Qualitative Report 2 (3): 1–9.
Article Google Scholar
Detering, Karen M., Andrew D. Hancock, Michael C. Reade, and William Silvester. 2010. ‘The Impact of Advance Care Planning on End of Life Care in Elderly Patients: Randomised Controlled Trial.’ British Medical Journal 340 (7751): 1–9.
Google Scholar
Engel, George L. 1977. ‘The Need for a New Medical Model: A Challenge for Biomedicine.’ Science 196 (4286): 129–136.
Article Google Scholar
Frosch, D.L., and R.M. Kaplan. 1999. ‘Shared Decision Making in Clinical Medicine: Past Research and Future Directions.’ American Journal of Preventive Medicine 17 (4): 285–294.
Article Google Scholar
Gale, Nicola K., Gemma Heath, Elaine Cameron, Sabina Rashid, and Sabi Redwood. 2013. ‘Using the Framework Method for the Analysis of Qualitative Data in Multi-disciplinary Health Research.’ BMC Medical Research Methodology 13 (117): 1–8.
Google Scholar
Gaveras, Eleni Margareta, Maria Kristiansen, Allison Worth, Tasneem Irshad, and Aziz Sheikh. 2014. ‘Social Support for South Asian Muslim Parents with Life-limiting Illness Living in Scotland: A Multiperspective Qualitative Study.’ BMJ Open 4 (2): 1–11.
Google Scholar
Good, Phillip, Russell Richard, William Syrmis, Sue Jenkins-Marsh, and Jane Stephens. 2014. ‘Medically Assisted Nutrition for Adult Palliative Care Patients.’ Cochrane Database of Systematic Reviews 4 (CD006274): 1–16.
Google Scholar
Green, Judith, and Nicki Thorogood. 2009. Qualitative Methods for Health Research. 2nd ed. Los Angeles, CA: Sage.
Google Scholar
Guest, Greg, Arwen Bunce, and Laura Johnson. 2006. ‘How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability.’ Field Methods 18 (1): 59–82.
Article Google Scholar
Heath, Iona. 2006. ‘Commentary: Patients Are Not Commodities.’ British Medical Journal 332 (7545): 846–847.
Article Google Scholar
Illich, Ivan. 1974. Medical Nemesis: The Expropriation of Health. London: Calder and Boyars.
Book Google Scholar
Kettani, Houssain. 2010. ‘World Muslim Population.’ In Proceedings of the 8th Hawaii International Conference on Arts and Humanities, Honolulu, Hawaii. Available at http://hichumanities.org/wp-content/uploads/proceedings-library/AH2010.pdf.
Kübler-Ross, Elisabeth, and David Kessler. 2014. On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. New York, NY: Scribner.
Google Scholar
Mahdi, Sundus, Obadah Ghannam, Sydeaka Watson, and Aasim I. Padela. 2016. ‘Predictors of Physician Recommendation for Ethically Controversial Medical Procedures: Findings from an Exploratory National Survey of American Muslim Physicians.’ Journal of Religion and Health 55 (2): 403–421.
Article Google Scholar
O’Neill, Onora. 2002. Autonomy and Trust in Bioethics: The Gifford Lectures, University of Edinburgh, 2001. Cambridge: Cambridge University Press.
Book Google Scholar
Padela, Aasim I., Katie Gunter, Amal Killawi, and Michele Heisler. 2012. ‘Religious Values and Healthcare Accommodations: Voices from the American Muslim Community.’ Journal of General Internal Medicine 27 (6): 708–715.
Article Google Scholar
Ritchie, Jane, and Jane Lewis, eds. 2003. Qualitative Research Practice: A Guide for Social Science Students and Researchers. London: Sage.
Google Scholar
Sackett, David L. 2005. ‘Evidence-based Medicine.’ In Encyclopedia of Biostatistics, eds. Peter Armitage and Theodore Colton. 2nd ed. 8 vols. London: Wiley.
Google Scholar
Sandelowski, Margarete. 1994. ‘Focus on Qualitative Methods: The Use of Quotes in Qualitative Research.’ Research in Nursing ad Health 17 (6): 479–482.
Article Google Scholar
———. 1998. ‘Writing a Good Read: Strategies for Re-presenting Qualitative Data.’ Research in Nursing and Health 21 (4): 375–382.
Article Google Scholar
Stange, Kurt C. 2010. ‘Power to Advocate for Health.’ The Annals of Family Medicine 8 (2): 100–107.
Article Google Scholar

Download references

Author information

Authors and Affiliations

University of Cambridge, Cambridge, UK
Mehrunisha Suleman

Authors

Mehrunisha Suleman
View author publications
You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Mehrunisha Suleman .

Editor information

Editors and Affiliations

Oxford Centre for Islamic Studies, Oxford, UK
Afifi al-Akiti
Department of Emergency Medicine & Institute for Health and Equity, Medical College of Wisconsin, Milwaukee, WI, USA
Aasim I. Padela

Appendices

1.1 Appendix 1: Draft Interview Guide for Semi-structured In-depth Interviews with Policy Makers, Healthcare Staff, Muslim Patients, Families, Islamic Scholars, Imams and Chaplains

Part A: Introduction and a brief description of what the research is about

‘Thank you very much for agreeing to participate in this study which aims to capture views of Muslims on end-of-life care or the views of those who have experience of taking care of Muslim patients and families at the end of life. Firstly, have you had a chance to read the information sheet? Do you have any questions or concerns about the information you were provided? Are you happy to participate in the study? I will be recording the interview, as stated in the information sheet. Are you happy with that? I will also be asking questions on a case-by-case basis and based on your responses.’

Part B: End of life and end-of-life care services
1. (a)
  What is their experience of end-of-life care?
  1. (i)
    ‘To begin with could you please tell me a little about yourself, how you got into this role and what you do?’
  2. (ii)
    ‘To begin with could you please tell me a little about yourself and your experience of end-of-life care?’
2. (b)
  What are your experiences of end-of-life care?
  1. (i)
    ‘Can you tell me a little bit about your experience of end-of-life care?’
  2. (ii)
    ‘Who was involved?’
  3. (iii)
    ‘What happened?’
  4. (iv)
    ‘Were there difficult decisions to be made? Can you tell me more about these?’
3. (c)
  What resources do you have to navigate these questions and concerns?
Part C: Faith and end of life
1. (a)
  In your experience, does your faith or the faith of your patients affect your practice, experience and/views on end-of-life care?
  1. (i)
    If yes, then please can you tell me more about this?
  2. (ii)
    Does it affect how you define death?
    - Do you consider death to be:
      - The irreversible cessation of cardiac and respiratory function?
      - The irreversible loss of ‘personhood’?
      - The irreversible loss of ‘consciousness’?
      - The irreversible loss of brain stem function?
      - Brain stem and/or cardiac death (both are the same)?
      - When the soul departs the body
        
        Defined by brain stem death
        
        Defined by cardiac death
        
        Defined by either brain stem and/or cardiac death
        
        Defined by neither of these. If other, please explain
  3. (iii)
    Does it affect the types of people who are involved in end-of-life care decisions?
  4. (iv)
    Does it affect the type of care that is provided at the end of life?
Part D: Faith, end of life and beliefs about the value of life
1. (a)
  In your experience, does your faith or the faith of your patients affect views about whether the value of human life is linked to quality of life?
  1. (i)
    If yes, then please can you tell me more about this?
  2. (ii)
    Are views about human life and quality of life associated with understandings of death and dying? If so how? If not, why not?
  3. (iii)
    Are views about human life and quality of life associated with views about an afterlife? If so how? If not, why not?
  4. (iv)
    Are views about human life and quality of life associated views and beliefs about illness and suffering? If so how? If not, why not?
Part E: Religious beliefs and making decisions about end-of-life care services
1. (a)
  In your understanding and experience, does your faith or the faith of your patients affect views about:
  1. (i)
    Withholding of life-sustaining treatment
  2. (ii)
    Withdrawing of life-sustaining treatment
  3. (iii)
    Euthanasia/Physician assisted suicide
  4. (iv)
    Are these views associated with your ideas and concerns for the patients’ quality of life? If so how? If not, why not?
2. (b)
  In your experience, does your faith or the faith of your patients affect views about:
  1. (i)
    Meeting a patient’s request to withhold treatment at the end of life
  2. (ii)
    Meeting a patient’s or family’s request to withdraw treatment at the end of life
  3. (iii)
    Meeting a patient’s or family’s request to continue treatment at the end of life
  4. (iv)
    Considering a patient’s request to end their life. Has this ever happened? Can you tell me more about it?
Part F: Role of spiritual/religious leaders in end-of-life care
1. (a)
  Have you ever consulted an Imam, Chaplain or Islamic scholar when making decisions about end-of-life care?
  1. (i)
    If yes, then please can you tell me more about this?
  2. (ii)
    Who were they and what was their role?
  3. (iii)
    Why did you feel it was necessary to consult them? What happened?
  4. (iv)
    How did you find their involvement in the overall experience of end-of-life-care decision-making?
Part G: Potential impact of policy changes in the UK, such as an ‘Assisted Dying Bill’
1. (a)
  Did you hear about the UK government’s consideration of an ‘Assisted Dying Bill’ in 2015?
  1. (i)
    If yes, then please can you tell me more about this?
  2. (ii)
    What did you understand about the Bill?
  3. (iii)
    If the Bill or similar legislation is passed in the future, how would it impact your work/experience of the healthcare services?
    - Would it impact how you would view the healthcare services in the UK?
    - Would it impact how you would provide and/or access services?
    - Would it impact your relationship with healthcare workers/patients?
Part H: Questions and concluding remarks

‘Before we finish do you have any questions or concerns you would like to raise about what we have discussed? Are you still happy for me to use the data I have collected from this interview for my study? If you wish to withdraw at any point, then please do not hesitate to let me know. Finally, thank you so much for your time and generosity.’

1.2 Appendix 2: NVivo Version 10 Coding Frame

Codes for NVivo Version 10

1.
Islamic normative sources
1. (a)
  Belief in God
2. (b)
  Beliefs about death
  1. (i)
    Belief in the ākhira (hereafter)
  2. (ii)
    Islamic understanding of death
  3. (iii)
    ‘Every soul shall taste death’ (Qur’an 3:185, Āl ʿImrān)
  4. (iv)
    Stages of EOLC
3. (c)
  Ḥadīth (tradition of the Prophet)
4. (d)
  Islamic law
5. (e)
  Qur’anic reference
6. (f)
  Role of Islamic scholars
7. (g)
  Other sources
2.
Medical interventions
1. (a)
  Organ donation
2. (b)
  Defining death
  1. (i)
    Brain death diagnosis
3. (c)
  ‘Do Not Attempt Resuscitation’ (DNAR)
4. (d)
  Withdrawal of treatment
5. (e)
  Withholding treatment
6. (f)
  Treatment versus care
7. (g)
  Administration of intensive care
8. (h)
  Special issues
  1. (i)
    Assisted dying
  2. (ii)
    Euthanasia
  3. (iii)
    Advanced Care Plans
    1. 1.
      Role of healthcare staff
      1. (a)
        Informing about process of death
      2. (b)
        Different views re: death and dying
        
        (i)
        When God decrees
        
        (ii)
        Reliance on God
        
        (iii)
        Need for control
      3. (c)
        Prognostication
        
        (i)
        Challenges re: prognostication
    2. 2.
      Uptake from patients and families
    3. 3.
      Challenges
      1. (a)
        Wanting to hold on to theological commitments
      2. (b)
        Lack of trust
9. (i)
  Other interventions
3.
Role of hospice
1. (a)
  Care
  1. (i)
    Nursing care
  2. (ii)
    Medical care
2. (b)
  Spiritual support
  1. (i)
    Chaplaincy in hospice
  2. (ii)
    Community volunteers
3. (c)
  Bereavement support
4. (d)
  Having diverse staff
5. (e)
  Supporting family
6. (f)
  Fulfilling patients’ wishes
7. (g)
  Working with community
8. (h)
  Meeting religious needs
9. (i)
  Meeting cultural needs
10. (j)
  Meeting diverse needs
  1. (i)
    Diverse population in London
  2. (ii)
    Diverse population in Birmingham
11. (k)
  Staff encountering Muslim patients and families
  1. (i)
    Needs
  2. (ii)
    Challenges
    1. 1.
      Cases
    2. 2.
      Resources they have
    3. 3.
      Resources they don’t have
    4. 4.
      Resources/training they need
  3. (iii)
    Emerging challenges
    1. 1.
      Value deliberations
    2. 2.
      Staff needing more training and education re: Muslim theological commitments
      1. (a)
        Going beyond fulfilling ritual requirements
12. (l)
  Perception about hospice services
  1. (i)
    Place to die
  2. (ii)
    For people of other faith
  3. (iii)
    For people of other ethnicity
13. (m)
  Other
4.
Hospital EOLC
1. (a)
  How staff encounter Muslim patients and families
  1. (i)
    Cases
  2. (ii)
    Challenges
  3. (iii)
    Decision makers
    1. 1.
      Resources they have
    2. 2.
      Resources they don’t have
    3. 3.
      Resources/training they need
2. (b)
  Role of palliative care
3. (c)
  Role of allied healthcare staff
  1. (i)
    Clinical psychologist
  2. (ii)
    Other
4. (d)
  Other
5.
GP EOLC
1. (a)
  Advanced Care Planning
2. (b)
  Cases
3. (c)
  Challenges
4. (d)
  Decision makers
  1. 1.
    Resources they have
  2. 2.
    Resources they don’t have
  3. 3.
    Resources/training they need
5. (e)
  Need for community chaplaincy
6. (f)
  Other
6.
EOLC cases
7.
Personal faith
1. (a)
  Patients
  1. (i)
    Values
  2. (ii)
    Qur’anic reference
  3. (iii)
    Other
2. (b)
  Families
  1. (i)
    Values
  2. (ii)
    Qur’anic reference
  3. (iii)
    Other
3. (c)
  Staff
  1. (i)
    Values
  2. (ii)
    Qur’anic reference
  3. (iii)
    Other
4. (d)
  Other
8.
Ethical deliberations
1. (a)
  Harms of treatment
  1. (i)
    Side effects
2. (b)
  Limitations of treatment
3. (c)
  Best interests
  1. (i)
    Expectations or goals of intervention
4. (d)
  Quality of life
  1. (i)
    Extending life
5. (e)
  Patient autonomy
  1. (i)
    Female patients and challenges with protecting autonomy
  2. (ii)
    English proficiency
  3. (iii)
    Role of translators
  4. (iv)
    Patient refusing treatment
    1. 1.
      Fatalism vs acceptance
6. (f)
  Respecting patient and family values
  1. (i)
    Understandings about suffering
  2. (ii)
    Understandings about pain relief
  3. (iii)
    Understandings about hydration
  4. (iv)
    Understandings about nutrition
7. (g)
  Contentions issues
  1. (i)
    Futility
  2. (ii)
    Whose perspective(s)
8. (h)
  Role of court in deliberating ethical issues and clinical decisions
9. (i)
  Resource allocation
10. (j)
  Nature; and what is ‘natural’
11. (k)
  Artificial
12. (l)
  Suffering
13. (m)
  Truth telling and collusion
14. (n)
  Care
15. (o)
  Phronesis
16. (p)
  Moral anxiety
17. (q)
  Moral frustration
18. (r)
  Moral conflict
19. (s)
  Other
9.
Chaplaincy
1. (a)
  History of chaplaincy
  1. (i)
    Changing landscape of chaplaincy
2. (b)
  Multifaith Chaplaincy
  1. (i)
    Need for diversity
  2. (ii)
    Resource issues
  3. (iii)
    Trust
  4. (iv)
    Meaning-making
  5. (v)
    Existential questions
3. (c)
  Muslim chaplaincy
  1. (i)
    Challenges in Muslim chaplaincy
    1. 1.
      Duration of chaplaincy posts
    2. 2.
      Number of chaplaincy posts
    3. 3.
      Career progression
    4. 4.
      Management in chaplaincy
    5. 5.
      How involvement occurs
    6. 6.
      Other
  2. (ii)
    Issues that require consultation/role of Muslim chaplaincy
    1. 1.
      Existential questions
    2. 2.
      Islamic legal permission for treatment
    3. 3.
      Interpretation of religious values
      1. (a)
        Life as scared
      2. (b)
        Hope
      3. (c)
        Acceptance
      4. (d)
        Seeking cure
      5. (e)
        Other
    4. 4.
      Pastoral role
      1. (a)
        Dealing with existential questions
    5. 5.
      Advice re: organ donation
    6. 6.
      Religious deliberation about withdrawal of treatment
    7. 7.
      Religious deliberation about withholding of treatment
    8. 8.
      Permissibility of medicines
    9. 9.
      Community chaplaincy role
      1. (a)
        Home visits
      2. (b)
        Prayers
      3. (c)
        Advice regarding EOLC
        
        (i)
        Death certification
        
        (ii)
        GP visit (prevent ambulance call outs)
        
        (iii)
        Burial
        
        (iv)
        Funeral prayer
        
        (v)
        Educating community
        
        (vi)
        Empowering community
      4. (d)
        Gap in community chaplaincy role
    10. 10.
      Other
  3. (iii)
    Motivations for providing service
    1. 1.
      Reward for helping people
  4. (iv)
    Negotiating between family and clinical team
    1. 1.
      Offering advice
    2. 2.
      Offering support
    3. 3.
      Offering religious guidance/interpretation
    4. 4.
      Liaising with community (Imam/scholar/family)
    5. 5.
      Imam versus chaplain advice
    6. 6.
      Challenges re: negotiation
      1. (a)
        Building trust
      2. (b)
        Competing voices
      3. (c)
        Difficult context
      4. (d)
        Delaying withdrawal of treatment
      5. (e)
        Medical versus Islamic view
    7. 7.
      On call emergency service
      1. (a)
        Support and advice when the patient is dying
      2. (b)
        Giving advice at bedside
      3. (c)
        Marriage at bedside
      4. (d)
        Prayers at bedside
      5. (e)
        Support at bedside
      6. (f)
        Visiting
    8. 8.
      Other
  5. (v)
    Support and advice after death
    1. 1.
      Funeral arrangements
  6. (vi)
    Bereavement support
  7. (vii)
    Post mortem advice
  8. (viii)
    Training and education of Muslim chaplains
  9. (ix)
    Other
10.
Values that are negotiated
1. (a)
  Best interests
  1. (i)
    Theology
    1. 1.
      Hope
    2. 2.
      Seeking cure
    3. 3.
      Acceptance
    4. 4.
      Preserving life/life as sacred
2. (b)
  Quality of life
  1. (i)
    Theology
    1. 1.
      Beliefs about suffering
    2. 2.
      Beliefs about afterlife
    3. 3.
      Reliance on God
    4. 4.
      What constitutes ‘taking life’
3. (c)
  Life as a test
4. (d)
  Life as limited
5. (e)
  The five Islamic ethico-legal principles (maqāṣid)
6. (f)
  Balancing opposing Islamic values
7. (g)
  Custom or ʿurf
8. (h)
  Islamic versus ‘secular’/ ‘Western’ values
  1. (i)
    Imān or belief
  2. (ii)
    Reliance on God’s knowledge
  3. (iii)
    Reliance on God’s power
  4. (iv)
    Belief in cure
9. (i)
  Dignity
10. (j)
  ‘Good death’/dying well
  1. (i)
    Suffering
  2. (ii)
    Pain
  3. (iii)
    Level of imān or belief
  4. (iv)
    Purpose of life is worship
11. (k)
  Family values
  1. (i)
    Role of family
    1. 1.
      Support of family
    2. 2.
      Duty of family
12. (l)
  Community support
13. (m)
  Society and loneliness
14. (n)
  Virtues
15. (o)
  Duties
16. (p)
  Consequences
17. (q)
  Value deliberations
  1. (i)
    Suffering versus making comfortable
  2. (ii)
    Pain versus pain-free
  3. (iii)
    Caring, curing, letting die
18. (r)
  Other
11.
Muslim EOLC challenges
1. (a)
  Migration
2. (b)
  Language
3. (c)
  Education
4. (d)
  Isolation and loneliness
5. (e)
  Dealing with healthcare issues
  1. (i)
    Diagnosis
    1. 1.
      Limitations of tools e.g., MMSE (no equivalent terms in Punjabi for ‘imagine’)
  2. (ii)
    Prognosis
  3. (iii)
    Uncertainty
  4. (iv)
    Healthcare logistics
    1. 1.
      Referral
    2. 2.
      Information
    3. 3.
      Co-ordination of care
    4. 4.
      Access to services
  5. (v)
    Relationship with GP
  6. (vi)
    Relationship with hospital staff
  7. (vii)
    Relationship with hospice
  8. (viii)
    Understanding treatment
  9. (ix)
    Understanding palliation
  10. (x)
    Understanding clinical management
    1. 1.
      Withdrawal of interventions
    2. 2.
      Withholding interventions
    3. 3.
      Negotiating ceilings of treatment
  11. (xi)
    Respecting teams
  12. (xii)
    Unmet needs
6. (f)
  Dealing with religious issues
  1. (i)
    Wanting to uphold religious values
    1. 1.
      Prayers
    2. 2.
      Other rituals
    3. 3.
      Ḥalāl food
    4. 4.
      Visitation by family and others
    5. 5.
      Values (hope, seeking cure, etc.)
    6. 6.
      Identity as a convert to faith
    7. 7.
      Hardship challenging faith
    8. 8.
      Faith as support in hardship
  2. (ii)
    Understanding religious values
  3. (iii)
    Unmet needs
7. (g)
  Dealing with unexpected needs
  1. (i)
    Needing help at home
  2. (ii)
    Loss of employment
    1. 1.
      Loss of identity
  3. (iii)
    Migration status
  4. (iv)
    Chaperone
  5. (v)
    Legal requirements
    1. 1.
      Wills
    2. 2.
      Statutory requirements
  6. (vi)
    Impact of illness
    1. 1.
      Physical
    2. 2.
      Mental
    3. 3.
      Familial
    4. 4.
      Social
    5. 5.
      Spiritual
8. (h)
  Patriarchy
9. (i)
  Intergenerational differences
10. (j)
  Services Muslim families may not take up
11. (k)
  Needs of Muslim patients and families
  1. (i)
    Religious needs
    1. 1.
      Values
    2. 2.
      Rituals
    3. 3.
      People
  2. (ii)
    Cultural needs
  3. (iii)
    Other
12. (l)
  Genetic diseases
13. (m)
  Muslim diversity
14. (n)
  Rumours
15. (o)
  Challenging family dynamics
16. (p)
  Sensitive conditions
  1. (i)
    HIV/AIDS
17. (q)
  EOLC communication challenges
  1. (i)
    Language
  2. (ii)
    Values
  3. (iii)
    Roles
  4. (iv)
    Other
18. (r)
  Other
12.
Decision makers
1. (a)
  Role of patient
2. (b)
  Role of family
  1. (i)
    Religious values
  2. (ii)
    Cultural values
  3. (iii)
    Duty to care for parents
  4. (iv)
    Duty to care for the ill
3. (c)
  Role of Islamic scholars
4. (d)
  Role of chaplains
5. (e)
  Role of healthcare team
6. (f)
  Role of community
  1. (i)
    Role of mosques
  2. (ii)
    Role of Imam
  3. (iii)
    Role of community
  4. (iv)
    Role of funeral services
  5. (v)
    Role of volunteers
  6. (vi)
    Islamic values re: community
    1. 1.
      Social welfare (farḍ kifāya)
7. (g)
  Managing different needs
  1. (i)
    Needs of patient
  2. (ii)
    Needs of family
  3. (iii)
    Needs of healthcare staff
    1. 1.
      Wanting to know they have done a ‘good job’
    2. 2.
      Following best practice guidance
    3. 3.
      Aftercare for staff
    4. 4.
      Support for staff
  4. (iv)
    Conflicting needs
  5. (v)
    Other
8. (h)
  Other
13.
Trust building
1. (a)
  Religious knowledge
2. (b)
  Religious language
3. (c)
  Religious authority
4. (d)
  Clinical knowledge
5. (e)
  Clinical language
6. (f)
  Clinical authority
7. (g)
  Dealing with uncertainty in clinical knowledge
  1. (i)
    Need for education
8. (h)
  Dealing with uncertainty in religious knowledge
  1. (i)
    Need for more scholarship
9. (i)
  Chaplaincy authority
10. (j)
  Islamic scholarly authority
11. (k)
  Authority of Muslim doctors
12. (l)
  Other
14.
Religion versus culture
1. (a)
  Flying the body home
2. (b)
  Role of women
3. (c)
  Appropriation of religion
  1. (i)
    Role of religious authority in cultural practices
4. (d)
  Other cultural practices
15.
Children and young people in EOLC
1. (a)
  Children
  1. (i)
    Role of mother
  2. (ii)
    Bereavement
2. (b)
  Young adults
  1. (i)
    Religious views
  2. (ii)
    Cultural views
  3. (iii)
    Role of parents and family
  4. (iv)
    Role of healthcare professionals
  5. (v)
    Challenges
    1. 1.
      Sexuality and intimacy
  6. (vi)
    Other
16.
Post mortems and coroner services
1. (a)
  How staff encounter Muslim patients and families
  1. (i)
    Cases
  2. (ii)
    Challenges
  3. (iii)
    Decision makers
    1. 1.
      Resources they have
    2. 2.
      Resources they don’t have
    3. 3.
      Resources/training they need
2. (b)
  Other
17.
Funeral services
18.
Bereavement services
19.
Gaps (in Muslim perspectives on EOLC)
1. (a)
  Need for research
2. (b)
  Need for training
3. (c)
  Need for education
4. (d)
  Case based learning
5. (e)
  Talking about death
6. (f)
  Other
20.
Reflexivity on my role as researcher
1. (a)
  My identity
  1. (i)
    Female
  2. (ii)
    Visibly Muslim
2. (b)
  My tacit understanding
3. (c)
  Need to probe
4. (d)
  Being asked my views/perceptions
5. (e)
  Other

1.3 Appendix 3: A Schematic of the Coding Framework Used for the Data Presented

Codes and quotes	Themes or descriptive accounts	Exploratory accounts	Main themes or aspects
– Process of death: ‘You talk about people gradually deteriorating, organs failing, organs becoming weaker…’ – Prognostication: ‘We’re not trying to decide when you die, but we can see the pattern …’ ‘… recognize that they are in that dying phase …’ – Theological commitments and prognostication: ‘… when your God takes you …’ ‘… You can almost see them clicking with their faith …’ ‘ … You can’t play God you don’t know.’	1. Biochemical knowledge of gradual organ dysfunction and tissue degradation 2. Prognostic information and challenges of conveying and accepting prognostic information: – Nurses rely on biomedical knowledge and training – Nurses rely on the experiential knowledge of the ‘dying phase’ 3. Time of death as God’s knowledge 4. Ready to go when God decrees – Patients and families by contrast rely on theological commitments	Understandings of Death and Dying	EOLC decision-making in modern healthcare systems: values, norms and ontologies
When nurses describe challenges of having ACP conversations. GPs talk about challenges and not wanting to force ACP decisions. Reasons for challenges: – Theological commitments: ‘in God’s hands’ ‘what will happen will happen’ Not aligned with patients’ values e.g., hope, reliance on God – Negotiating ceilings of treatment: ‘we want everything’ Subsequent harms: – Inappropriate hospital admissions – Rapid discharge – Utilization of scare resources Patient’s don’t consider ACP conversations as relevant to them.	1. Advanced Care Plans 2. Theological commitments 3. Consequences of lack of understanding and ineffective negotiation/communication 4. Importance of patient’s voice in ACPs 5. ACPs perceived as being counter to theological commitments to hope and reliance on God	Evidenced-based EOLC: Advanced Care Planning
Beliefs about suffering: – Beliefs in an afterlife – Illness and disease as suffering – Suffering as a means of cleansing – Suffering as means of spiritual elevation – Suffering as a preparation for afterlife: ‘… the suffering that he was experiencing was a cleansing of him …’ Understanding about pain: – Physical pain – Spiritual pain/existential pain Healthcare professionals’ inability to understand such theological commitments to suffering: ‘… It’s not just a transmission thing, it’s a reception thing’ Healthcare professionals’ ethical commitment to not collude with suffering: ‘… me or my colleagues … couldn’t be party or collude with suffering’ Beliefs about suffering impacting uptake of interventions e.g., pain relief Beliefs about a ‘good death’: – Fulfilling rituals of death – Remembering God (dhikr) – Fulfilling debts Concerns around sedation Less concern (from patients and families) around agony of death Staff morally challenged by witnessing patients’ suffering; their notions of a ‘good death’ about patient being ‘comfortable,’ ‘pain free’	1. Suffering: Theological beliefs about suffering Healthcare professionals’ ethical commitment to not collude with suffering Uptake of pain relief 2. ‘Good death’: Concerns around sedation Concerns around being able to fulfil rituals Healthcare professionals’ distress at witnessing patient suffering	Beliefs about suffering and understandings of what is a ‘good death’	Muslim values, beliefs and practice in EOLC decision-making: sources, languages and authorities
Chaplains being asked about healthcare interventions, e.g., DNAR Chaplains and Islamic scholars being asked about withholding and/or withdrawal of treatment Role of chaplains and Islamic scholars to interpret Islamic values, e.g., ‘life as sacred’; ‘seeking cures’	1. Religious meaning-making 2. Interpretation of religious meaning-making in a clinical context 3. Role of interlocutors skilled in translating religious knowledge and language in a clinical setting 4. Lack of skilled interlocutors	Religious versus clinical knowledge and language: conferring of trust in EOLC decision-making

Rights and permissions

Reprints and permissions

Copyright information

About this chapter

Cite this chapter

Suleman, M. (2022). Muslim Values and End-of-Life Healthcare Decision-Making: Values, Norms and Ontologies in Conflict?. In: al-Akiti, A., Padela, A.I. (eds) Islam and Biomedicine. Philosophy and Medicine, vol 137. Springer, Cham. https://doi.org/10.1007/978-3-030-53801-9_8

Download citation

DOI: https://doi.org/10.1007/978-3-030-53801-9_8
Published: 28 August 2022
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-53800-2
Online ISBN: 978-3-030-53801-9
eBook Packages: Religion and PhilosophyPhilosophy and Religion (R0)

Publish with us

Policies and ethics

Muslim Values and End-of-Life Healthcare Decision-Making: Values, Norms and Ontologies in Conflict?

Abstract

Access this chapter

Notes

References

Author information

Authors and Affiliations

Corresponding author

Editor information

Editors and Affiliations

Appendices

Appendices

1.1 Appendix 1: Draft Interview Guide for Semi-structured In-depth Interviews with Policy Makers, Healthcare Staff, Muslim Patients, Families, Islamic Scholars, Imams and Chaplains

1.2 Appendix 2: NVivo Version 10 Coding Frame

1.3 Appendix 3: A Schematic of the Coding Framework Used for the Data Presented

Rights and permissions

Copyright information

About this chapter

Cite this chapter

Download citation

Share this chapter

Publish with us

Search

Navigation