Review Article| Volume 60, ISSUE 6, P1223-1238.e4, December 2020

Download started.


Preferences and Experiences of Muslim Patients and Their Families in Muslim-Majority Countries for End-of-Life Care: A Systematic Review and Thematic Analysis



      Care for people with progressive illness should be person centered and account for their cultural values and spiritual beliefs. There are an estimated 1.7 billion Muslims worldwide, largely living in low-income and middle-income countries.


      This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients and/or families for end-of-life care in Muslim-majority countries.


      Systematic review.

      Data sources

      PsychINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials, PubMed, Applied Social Sciences Index and Abstracts (ASSIA), Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and gray literature was included. Qualitative studies analyzed using thematic analysis and quantitative component provided triangulation.


      The initial search yielded n = 5098 articles, of which n = 30 met the inclusion criteria. A total of 5342 participants (4345 patients; 81.3%) were included; 97.6% had advanced cancer. Most (n = 22) studies were quantitative. Three themes and subthemes from qualitative studies were identified using thematic analysis: selflessness (burden to others and caregiver responsibilities), ambivalence (hope and hopelessness), and strong beliefs in Islam (beliefs in death and afterlife and closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families.


      Despite the scarce evidence of relatively low quality, the analysis revealed core themes. To achieve palliative care for all in line with the total pain model, beliefs must be identified and understood in relation to decision-making processes and practices.

      Key Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of Pain and Symptom Management
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Pew Research Center
        Muslims and Islam: key findings in the U.S. and around the world.
        (Available from)
        • Lugo L.
        • Cooperman A.
        The future of the global Muslim population.
        Pew Research Center, Washington, DC2011
        • Mendieta M.
        • Buckingham R.W.
        A review of palliative and hospice care in the context of Islam: dying with faith and family.
        J Palliat Med. 2017; 20: 1284-1290
        • Ghotbi N.
        Bioethics in the Islamic Republic of Iran.
        Eubios J Asian Int Bioeth. 2012; : 69-75
        • W.P.C. Alliance and World Health Organization
        Global atlas of palliative care at the end of life.
        Worldwide Palliative Care Alliance, London2014
        • Jahn Kassim P.N.
        • Alias F.
        Religious, ethical and legal considerations in end-of-life issues: fundamental requisites for medical decision making.
        J Relig Health. 2016; 55: 119-134
        • Mir T.
        Care of the terminally ill from religious perspectives: role of palliative and hospice care.
        J Islam Med Assoc North Am. 2011; 43: 168-173
        • Cheraghi M.A.
        • Payne S.
        • Salsali M.
        Spiritual aspects of end-of-life care for Muslim patients: experiences from Iran.
        Int J Palliat Nurs. 2005; 11: 468-474
        • Gustafson C.
        • Lazenby M.
        Assessing the unique experiences and needs of Muslim oncology patients receiving palliative and end-of-life care: an integrative review.
        J Palliat Care. 2019; 34: 52-61
        • Katiman D.
        Palliative care through the ages and within FIMA member countries in: Federation of Islamic Medical Associations Year Book 2016.
        (Available from)
        • Blankinship L.A.
        Providing culturally sensitive care for Islamic patients and families.
        J Christ Nurs. 2018; 35: 94-99
        • Rassool G.H.
        Cultural competence in nursing.
        Nurs Times. 2015; 111: 12-15
        • Choudry M.
        • Latif A.
        • Warburton K.G.
        An overview of the spiritual importances of end-of-life care among the five major faiths of the United Kingdom.
        Clin Med. 2018; 18: 23-31
        • Asadi-Lari M.
        • Madjd Z.
        • Goushegir S.
        Gaps in the provision of spiritual care for terminally ill patients in Islamic societies—a systematic review.
        Adv Palliat Med. 2008; 7: 73-80
        • Gatrad A.R.
        • Sheikh A.
        Medical ethics and Islam: principles and practice.
        Arch Dis Child. 2001; 84: 72-75
        • Chamsi-Pasha H.
        • Albar M.A.
        Ethical dilemmas at the end of life: Islamic perspective.
        J Relig Health. 2017; 56: 400-410
        • Al-Bar M.A.
        • Chamsi-Pasha H.
        End-of-life care.
        Contemporary bioethics. Springer International Publishing, Cham2015: 243-260
        • Moher D.
        • Liberati A.
        • Tetzlaff J.
        • Altman D.G.
        • PRISMA Group
        Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.
        BMJ. 2009; 339: b2535
        • Kmet L.M.
        • Cook L.S.
        • Lee R.C.
        Standard quality assessment criteria for evaluating primary research papers from a variety of fields.
        Alberta Heritage Foundation for Medical Research, Edmonton2004
        • Etkind S.N.
        • Bone A.E.
        • Lovell N.
        • Higginson I.J.
        • Murtagh F.E.M.
        Influences on care preferences of older people with advanced illness: a systematic review and thematic synthesis.
        J Am Geriatr Soc. 2018; 66: 1031-1039
        • Dixon-Woods M.
        • Agarwal S.
        • Jones D.
        • Young B.
        • Sutton A.
        Synthesising qualitative and quantitative evidence: a review of possible methods.
        J Health Serv Res Policy. 2005; 10: 45-53
        • Thomas J.
        • Harden A.
        Methods for the thematic synthesis of qualitative research in systematic reviews.
        BMC Med Res Methodol. 2008; 8: 45
        • Sandelowski M.
        • Leeman J.
        Writing useable qualitative health research findings.
        Qual Health Res. 2012; 22: 1404-1413
        • Harden A.
        Mixed-methods systematic reviews: integrating quantitative and qualitative findings.
        Focus. 2010; : 1-8
        • Pluye P.
        • Hong Q.N.
        Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews.
        Annu Rev Public Health. 2014; 35: 29-45
        • Arian M.
        • Younesi S.J.
        • Khanjani M.S.
        Explaining the experiences and consequences of care among family caregivers of patients with cancer in the terminal phase: a qualitative research.
        Int J Cancer Manag. 2017; 10
        • Dehghan R.
        • Ramakrishnan J.
        • Uddin-Ahmed N.
        • Harding R.
        ‘They patiently heard what we had to say… this felt different to me’: the palliative care needs and care experiences of advanced cancer patients and their families in Bangladesh.
        BMJ Support Palliat Care. 2012; 2: 145-149
        • Banning M.
        • Tanzeem T.
        Managing the illness experience of women with advanced breast cancer: hopes and fears of cancer-related insecurity.
        Eur J Cancer Care (Engl). 2013; 22: 253-260
        • Banning M.
        • Tanzeen T.
        Living with advanced breast cancer: perceptions of Pakistani women on life expectations and fears.
        Cancer Nurs. 2014; 37: E12-E18
        • Chick H.
        Spiritual distress in palliative care from religious perspectives.
        in: Punca utama keresahan spiritual dalam penjagaan paliatif menurut perspektif psikologi agama. Hasimah Chik PhD dissertation, University of Malaya, Malaysia2018
        • Erol O.
        • Unsar S.
        • Yacan L.
        • et al.
        Pain experiences of patients with advanced cancer: a qualitative descriptive study.
        Eur J Oncol Nurs. 2018; 33: 28-34
        • Fles R.
        • Bos A.
        • Rachmawati D.
        • et al.
        The role of Indonesian patients' health behaviors in delaying the diagnosis of nasopharyngeal carcinoma.
        BMC Public Health. 2017; 17: 510
        • Nova P.A.
        Chronic heart failure patients' perceptions on their palliative care needs.
        Enferm Clin. 2018; 28: 269-274
        • Almutairi K.M.
        • Alodhayani A.A.
        • Alonazi W.B.
        • Vinluan J.M.
        Assessment of health-related quality of life among caregivers of patients with cancer diagnosis: a cross-sectional study in Saudi Arabia.
        J Relig Health. 2017; 56: 226-237
        • Alsirafy S.A.
        • Abdel-Kareem S.S.
        • Ibrahim N.Y.
        • Abolkasem M.A.
        • Farag D.E.
        Cancer diagnosis disclosure preferences of family caregivers of cancer patients in Egypt.
        Psychooncology. 2017; 26: 1758-1762
        • Al-Zahrani O.
        • Eldali A.
        • Al-Shahri M.Z.
        Prevalence and severity of pain in cancer patients in an outpatient palliative care setting in Saudi Arabia.
        Qatar Med J. 2014; 2014: 38-45
        • Al-Shahri M.Z.
        • Eldali A.M.
        • Al-Zahrani O.
        Prevalence and severity of suffering among patients with advanced cancer.
        Support Care Cancer. 2012; 20: 3137-3140
        • Al-Shahri M.Z.
        • Eldali A.M.
        • Al-Zahrani O.M.
        Nonpain symptoms of new and follow-up cancer patients attending a palliative care outpatient clinic in Saudi Arabia.
        Indian J Palliat Care. 2012; 18: 98-102
        • Al-Jahdali H.H.
        • Bahroon S.
        • Babgi Y.
        • et al.
        Advance care planning preferences among dialysis patients and factors influencing their decisions.
        Saudi J Kidney Dis Transpl. 2009; 20: 232-239
        • Baharoon S.A.
        • Al-Jahdali H.H.
        • Al-Sayyari A.A.
        • et al.
        Factors associated with decision-making about end-of-life care by hemodialysis patients.
        Saudi J Kidney Dis Transpl. 2010; 21: 447
        • Bozcuk H.
        • Erdoğan V.
        • Eken C.
        • et al.
        Does awareness of diagnosis make any difference to quality of life?.
        Support Care Cancer. 2002; 10: 51-57
        • Çıracı Y.
        • Nural N.
        • Saltürk Z.
        • Çıracı Y.
        • Saltürk Z.
        Loneliness of oncology patients at the end of life.
        Support Care Cancer. 2016; 24: 3525-3531
        • Eyigor S.
        • Eyigor C.
        • Uslu R.
        Assessment of pain, fatigue, sleep and quality of life (QoL) in elderly hospitalized cancer patients.
        Arch Gerontol Geriatr. 2010; 51: e57-e61
        • Fard J.H.
        • Janbabaei G.
        Quality of life and its related factors among Iranian patients with metastatic gastrointestinal tract cancer: a cross-sectional study.
        Indian J Palliat Care. 2014; 20: 215-219
        • Hematti S.
        • Baradaran-Ghahfarokhi M.
        • Khajooei-Fard R.
        • Mohammadi-Bertiani Z.
        Spiritual well-being for increasing life expectancy in palliative radiotherapy patients: a questionnaire-based study.
        J Relig Health. 2015; 54: 1563-1572
        • Lkhoyaali S.
        • El Haj M.A.
        • Khmamouche M.R.
        • Berrada N.
        • Errihani H.
        Information needs of Moroccan elderly cancer patients.
        Tunis Med. 2015; 93: 532-536
        • Nayir E.
        • Koyuncu M.B.
        • Esin E.
        • et al.
        Attitudes of cancer patients after diagnosis: how cancer affects social life? A Turkish Oncology Group study.
        J BUON. 2017; 22: 208-213
        • Ozcelik H.
        • Cakmak D.E.
        • Fadiloglu C.
        • Yildirim Y.
        • Uslu R.
        Determining the satisfaction levels of the family members of patients with advanced-stage cancer.
        Palliat Support Care. 2015; 13: 741-747
        • Ozdogan M.
        • Samur M.
        • Bozcuk H.S.
        • et al.
        “Do not tell”: what factors affect relatives' attitudes to honest disclosure of diagnosis to cancer patients?.
        Support Care Cancer. 2004; 12: 497-502
        • Soylu C.
        • Babacan T.
        • Sever A.R.
        • Altundag K.
        Patients' understanding of treatment goals and disease course and their relationship with optimism, hope, and quality of life: a preliminary study among advanced breast cancer outpatients before receiving palliative treatment.
        Support Care Cancer. 2016; 24: 3481-3488
        • Soylu C.
        • Ozaslan E.
        • Karaca H.
        • Ozkan M.
        Psychological distress and loneliness in caregiver of advanced oncological inpatients.
        J Health Psychol. 2016; 21: 1896-1906
        • Yildirim Y.
        • Sertoz O.O.
        • Uyar M.
        • Fadiloglu C.
        • Uslu R.
        Hopelessness in Turkish cancer inpatients: the relation of hopelessness with psychological and disease-related outcomes.
        Eur J Oncol Nurs. 2009; 13: 81-86
        • Bülbül Y.I.
        • Ozlu T.
        • Arinc S.
        • et al.
        Assessment of palliative care in lung cancer in Turkey.
        Med Principles Pract. 2017; 26: 50-56
        • Yennurajalingam S.
        • Rodrigues L.F.
        • Shamieh O.M.
        • et al.
        Decisional control preferences among patients with advanced cancer: an international multicenter cross-sectional survey.
        Palliat Med. 2018; 32: 870-880
        • Zafar W.
        • Hafeez H.
        • Jamshed A.
        • et al.
        Preferences regarding disclosure of prognosis and end-of-life care: a survey of cancer patients with advanced disease in a lower-middle-income country.
        Palliat Med. 2016; 30: 661-673
        • Moens K.
        • Higginson I.J.
        • Harding R.
        Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review.
        J Pain Symptom Manage. 2014; 48: 660-677
        • Saunders C.
        The philosophy of terminal care.
        Manag Termin Malig Dis. 1984; : 2
        • Johnstone B.
        • Cohen D.
        • Konopacki K.
        • Ghan C.
        Selflessness as a foundation of spiritual transcendence: perspectives from the neurosciences and religious studies.
        Int J Psychol Relig. 2016; 26: 287-303
        • Schaffner K.F.
        Paradigm changes in organ transplantation: a journey toward selflessness?.
        in: Theoretical medicine and bioethics. Vol. 19. Springer, Kluwer Academic Publishers, the Netherlands1998: 425-440
        • Tanriverdi O.
        • Yavuzsen T.
        • Turhal S.
        • et al.
        Depression and socio-economical burden are more common in primary caregivers of patients who are not aware of their cancer: TURQUOISE Study by the Palliative Care Working Committee of the Turkish Oncology Group (TOG).
        Eur J Cancer Care (Engl). 2016; 25: 502-515
        • Sherif T.
        • Jehani T.
        • Saadani M.
        • Andejani A.W.
        Adult oncology and chronically ill patients: comparison of depression, anxiety and caregivers' quality of life.
        East Mediterr Health J. 2001; 7: 502-509
        • Malek M.M.
        • Abdul Rahman N.N.
        • Hasan M.S.
        • Haji Abdullah L.
        Islamic considerations on the application of patient's autonomy in end-of-life decision.
        J Relig Health. 2018; 57: 1524-1537
        • Kristiansen M.
        • Irshad T.
        • Worth A.
        • et al.
        The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland.
        Ethn Health. 2014; 19: 1-19
        • al-Islāmī M.A.
        Resolutions and recommendations of the Council of the Islamic Fiqh Academy 1985-2000.
        Islamic Research and Training Institute Islamic Development Bank, Jeddah2000
        • Zahedi F.
        • Larijani B.
        • Bazzaz J.T.
        End of life ethical issues and Islamic views.
        Iran J Allergy Asthma Immunol. 2007; 6: 5-15
        • Molassiotis A.
        • Fernández-Ortega P.
        • Pud D.
        • et al.
        Use of complementary and alternative medicine in cancer patients: a European survey.
        Ann Oncol. 2005; 16: 655-663
        • Harding R.
        • Higginson I.
        Working with ambivalence: informal caregivers of patients at the end of life.
        Support Care Cancer. 2001; 9: 642-645
        • Tullis J.A.
        Bring about benefit, forestall harm: what communication studies say about spirituality and cancer care.
        Asian Pac J Cancer Prev. 2010; 11: 67-73
        • Rathor M.Y.
        • Rani M.F.A.
        • Shah A.S.B.M.
        • et al.
        The principle of autonomy as related to personal decision making concerning health and research from an ‘Islamic viewpoint’.
        J Islam Med Assoc North Am. 2011; 43: 27-34
        • Choong K.A.
        Islam and palliative care.
        Glob Bioeth. 2015; 26: 28-42
        • Marzband R.
        • Hosseini S.
        • Hamzehgardeshi Z.
        A concept analysis of spiritual care based on Islamic sources.
        Religions. 2016; 7: 61
        • Leong M.
        • Olnick S.
        • Akmal T.
        • Copenhaver A.
        • Razzak R.
        How Islam influences end-of-life care: education for palliative care clinicians.
        J Pain Symptom Manage. 2016; 52: 771-774.e3
        • Abdulhameed H.E.
        • Hammami M.M.
        • Hameed Mohamed E.A.
        Disclosure of terminal illness to patients and families: diversity of governing codes in 14 Islamic countries.
        J Med Ethics. 2011; 37: 472-475
        • Harding R.
        • Nair S.
        • Ekstrand M.
        Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study.
        BMJ Open. 2019; 9: e024248
        • Knaul F.M.
        • Farmer P.E.
        • Krakauer E.L.
        • et al.
        Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report.
        Lancet (London, England). 2018; 391: 1391-1454
        • Dehghan R.
        • Ramakrishnan J.
        • Ahmed N.
        • Harding R.
        The use of morphine to control pain in advanced cancer: an investigation of clinical usage in Bangladesh.
        Palliat Med. 2010; 24: 707-714
        • Devi B.C.R.
        • Tang T.S.
        • Corbex M.
        A model of palliative care programme integrating rural with hospital care: Sarawak, Malaysia.
        Prog Palliat Care. 2010; 18: 31-36
        • Abudari G.
        • Hazeim H.
        • Ginete G.
        Caring for terminally ill Muslim patients: lived experiences of non-Muslim nurses.
        Palliat Support Care. 2016; 14: 599-611
        • Sheikh A.
        Death and dying—a Muslim perspective.
        J R Soc Med. 1998; 91: 138-140
        • Silbermann M.
        • Daher M.
        • Fahmi-Abdalla R.
        • Jaloudi M.A.
        • Hassan A.A.
        The middle east cancer consortium promotes palliative care.
        Lancet. 2015; 385: 1620-1621
        • Bingley A.
        • Clark D.
        A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC).
        J Pain Symptom Manage. 2009; 37: 287-296
        • Singh T.
        • Harding R.
        Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes.
        BMC Res Notes BioMed Cent Ltd. 2015; 8: 172


        • Jason A.
        Defining patient experience.
        Patient Experience J. 2014; 1: 7-19
        • Sandsdalen T.
        • Hov R.
        • Høye S.
        • Rystedt I.
        • Wilde-Larsson B.
        Patients' preferences in palliative care: a systematic mixed studies review.
        Palliat Med. 2015; 29: 399-419
        • Etkind S.N.
        • Daveson B.A.
        • Kwok W.
        • et al.
        Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review.
        J Pain Symptom Manage. 2015; 49: 611-624
        • Kitson A.
        • Marshall A.
        • Bassett K.
        • Zeitz K.
        What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing.
        J Adv Nurs. 2013; 69: 4-15