Relief from pain and suffering is a universal human right at the end-of-life.1 However, minority groups both internationally2 and within Australian society3 have been identified as vulnerable groups that do not equitably benefit from receiving optimum end-of-life care. With the legalization of euthanasia in certain localities and countries such as Oregon in the United States, the Netherlands, and Belgium, and the introduction of the Voluntary Assisted Dying Act 2017 in Victoria, Australia,4 there have been greater efforts to ensure terminal patients have the support necessary for a good death.5 A “good death,” however, is a subjective measure of the quality of life and is largely determined by the attitudes and beliefs of the patient and their family.6 These perspectives may not be in accordance with the reigning legal, clinical, and cultural practices of the dominant society.6 With the growing Muslim migrant communities worldwide, particularly in predominantly Christian countries, and the changing legal landscape, it is important that healthcare professionals and health-policy makers understand end-of-life care preferences among these populations.
Muslims, adherents of the Islamic religion, constitute a minority group within Australia, making up 2.6% of the population.7 The number of Muslims in Australia is set to increase to 4.9% by 2030.7 With the ongoing trend in aging of the Australian population, and the projection that 23% of its people will be over 65 years of age by 2050,7 it can be expected that there will be a steadily growing number of older Muslims needing various healthcare services, particularly towards the end of life. Islam has a great impact on the health-seeking behaviors of its followers, who view health and illness through a God-centric framework.8 Researchers have increasingly recognized that Muslims have their own set of beliefs, rituals, and requirements pertaining to death and dying, as evidenced by the proliferation of review articles on the topic from a normative Islamic stance.9
Islamic religiosity based on normative Islamic orthodoxy is, however, not synonymous with Muslim religiosity, which is characterized by the real-world health behaviors of Muslim patients.10 Muslims’ identities, values, and Islamic beliefs act as an independent social determinant of health and have been postulated to propagate the inequities in health between Muslims and other people within their host society via several mechanisms.10 Research on Muslim minority populations is under-represented in the healthcare literature generally and in end-of-life care specifically.11
Globally, factors found to impede optimum end-of-life care in minority communities were a mistrust of the healthcare system by patients12 and their perception of medical racism perpetuated in part by the historical abuse of minorities in medical research.12 Such circumstances were suggested to have led these patients not only to access fewer palliative care services, but also to request aggressive life-prolonging treatment.13 Other barriers included, but were not limited to, both the health professionals’14 and the patients’ lack of knowledge and awareness regarding palliative care generally,15 and the absence of a standardized referral pattern.14 Minority groups were less likely to receive adequate pain management16 and more likely to die in a place other than their place of preference,13 thereby, giving rise to a lower quality of life.17
Within the Australian literature, there has been a focus on the needs of ethnic minority groups such as those with a non-English-speaking background regarding information disclosure,6,18 transition to palliative care,6 and preferences for place of death.18 However, studies to date have failed to consider the end-of-life beliefs, attitudes, and practices of religious minorities within Australia. This is particularly important where patients’ religiosity impacts their understanding of health, illness, and treatment-seeking behavior.
Religion has been shown to be helpful in coping with illness,19 leading to a better quality of life,20 reduced depression and anxiety, and a greater acceptance of the disease trajectory.20 Moreover, religion has been found to impact medical decision-making generally and at the end of life specifically, with greater religiosity being linked to unique aspects of a person's health.19 For example, being religious can mean less preference for information disclosure,21 prolonged aggressive care,22 and less use of hospice services.23 Inadequate pain management at the end of life has also been associated with greater religiosity.24 In one study, some patients preferred to remain clear-headed as death approached in accordance with the teachings of their religious scriptures.24 Pain medication was subsequently refused despite continued pain.24 Other barriers to effective care at the end of life have also been shown to result from the cultural and religious differences between the clinician and the patient, which have led to competing expectations regarding treatment goals and the doctor-clinician relationship.25
The objective of the proposed review, therefore, is to survey the available empirical evidence on the end-of-life practices of adult Muslims with the aim of identifying gaps within the literature. A scoping review allows an examination of the conceptual boundaries that underpin the decision-making processes of Muslims at the end-of-life and the nature of the available evidence that drives such processes. This is significant for the Muslim patient, as applying a standardized approach to end-of-life care and failing to consider the differences in belief and the lived experience of these patients runs the risk of stereotyping this group, thereby, impeding effective care.6 Moreover, if the nuances of treatment decisions in advanced disease are not explained, Muslim patients may perceive all treatment options to be life-shortening or a form of euthanasia. Whilst euthanasia is strictly forbidden in normative Islam,9 withholding or withdrawing futile treatment is legal permissibility within Islamic jurisprudence. The results of this review will be used to develop a research proposal that will support further study in this area.
A preliminary search of the JBI Evidence-based Practice Database and the Cochrane Database of Systematic Review was conducted (see Appendix I). PROSPERO was also searched for prospective systematic reviews on the topic. These searches did not yield any systematic or scoping reviews that addressed the research question of this review.
- How do adult Muslims understand end-of-life treatment decisions?
- What are the attitudes, beliefs, and practices of Muslims relating to end-of-life treatment decisions?
- What are the factors that impact Muslims with regard to end-of-life treatment care?
- Does individual religiosity influence the treatment choices made by Muslim patients?
This scoping review will consider studies that include adults (18 years and older) who identify as Muslim regardless of sect and degree of religiosity and/or spirituality. Muslims, whether migrants in a host society or born citizens, will be included. The participants of the studies may be healthy volunteers who had a view on the subject, or patients and their caregivers faced with end-of-life decision-making. This review seeks to understand the decision-making processes of all Muslims regardless of their health status. Studies that explore the attitudes and beliefs of health professionals, medical and other allied health students, and chaplains will be excluded. It is expected that professionals and students within the healthcare field will have a higher health literacy and a different stake in treatment as compared to patients and lay Muslims from the general population. Studies including participants below the age of 18 will be excluded. It is expected that younger participants will have limited decision-making capacity, with their choice of treatment more accurately reflecting their guardians’ attitudes rather than their own.
The conceptual framework developed by Bert Broeckaert and the Flemish Palliative Care Federation26 will be used to guide the categorization of the treatment decisions at the end-of-life and, subsequently, the results of this review.
Broeckaert's typology will be adopted as it provides clarity and conceptualizes decisions in advanced disease, not merely based on their potential life-shortening capacity, but also their value to the patient's overall welfare and the underlying intention behind certain treatment choices.26 This distinction is important as it sheds light on the ethical nuances associated with the different treatment decisions, thereby preventing a skewed perception on end-of-life decisions as some form of euthanasia.26 According to Broeckaert's framework,26 treatment decisions in advanced disease can be classified as follows:
- (Forgoing) curative and/or life-sustaining treatment: This includes decisions relating to the initiation, continuation, withholding or withdrawal (non-treatment decisions due to futility/lack of effectiveness of treatment), and refusal (due to patient refusal) of curative or life-sustaining treatment.
- Pain and symptom control: Treatment decisions in this category include:
- - pain control: “the intentional administration of analgesics and/or other drugs in dosages and combinations required to adequately relieve pain”26(p.418)
- - palliative sedation: “the intentional administration of sedative drugs in dosages and combinations required to reduce the consciousness of a terminal patient as much as necessary to adequately relieve one or more refractory symptoms.”26(p.418)
- Euthanasia and assisted suicide: This category includes:
- - voluntary euthanasia: “the intentional administration of lethal drugs in order to painlessly terminate the life of a patient suffering from an incurable condition deemed unbearable by the patient, at this patient's request”26(p.418)
- - assisted suicide: “intentionally assisting a person, at this person's request, to terminate his or her life”26(p.418)
- - non-voluntary euthanasia: “the intentional administration of lethal drugs in order to painlessly terminate the life of a patient suffering from an incurable condition deemed unbearable, not at this patient's request.”26(p.418)
Studies conducted in non-Muslim majority countries will be considered for inclusion. Where the authors are exploring treatment decisions within a particular context, any treatment setting such as a hospital, intensive care ward, nursing home, or residential and hospice care will be considered. This review will include treatment decisions in the context of a terminal illness not confined to a specific medical diagnosis such as cancer, chronic kidney disease, or chronic heart failure.
Types of sources
Primary quantitative and qualitative studies written in English will be included. Unpublished studies in dissertations, conference proceedings, or as part of gray literature will be considered. This will serve to reduce the chance of publication bias. Review articles, conference abstracts, case studies, editorials, commentaries, and papers written from a purely theoretical perspective will be excluded. As the authors of this protocol are seeking a broad and comprehensive understanding of the review questions, a timeframe for the inclusion of papers will not be set and all material published since the inception of the selected databases will be considered (see Appendix I). Further, the quality of the studies will not be critiqued, as the aim of this review is not to make clinical recommendations; rather, the authors seek to map the empirical field pertaining to treatment decisions at the end-of-life with the aim of identifying indications for further research.
The search strategy for the forthcoming scoping review will be based on the three recommended steps outlined in the JBI methodology for scoping reviews.27
A preliminary scoping search was conducted in MEDLINE and Scopus. An analysis of the text words and index terms was then undertaken to populate the PCC framework. The components that were used to guide the search were Muslims (population), end-of-life treatment decisions (concept), healthcare facilities (context), and various terminal diagnoses (context). An initial search strategy was developed in MEDLINE (see Appendix I). The concepts and key index terms used in this preliminary search will later be adapted to the selected databases.
A comprehensive search will be conducted using the following databases: MEDLINE via OvidSP, PsycINFO via OvidSP, Embase via OvidSP, Scopus (Elsevier), CINAHL via EBSCO, and ProQuest Dissertations and Theses Global. The Journal of Palliative Medicine and the American Journal of Hospice and Palliative Care will be hand-searched for relevant studies. A search of the gray literature will also be conducted through Google search. The reference lists of all selected papers will be examined for additional papers that seem relevant to the research question. The authors of primary studies will be contacted for more information should this be required to ascertain the relevance of the study for this review.
Once the searches are complete, the references will be collated, sorted, and managed in EndNote V7.0 (Clarivate Analytics, PA, USA). After the collation of all search results and the removal of the duplicates, the abstracts of all papers will first be reviewed. The primary author (EM) and a second reviewer (BC) will assess the titles and the abstracts of these papers for relevance. Papers will be excluded if they are not related to adults, Muslims, treatment decisions as per Broeckaert's typology, or are not in English. Where there is a disagreement on the inclusion of a paper, a decision will be reached via discussion between EM and BC. After assessing the abstracts for relevance, the full articles of these papers will be reviewed. Papers not meeting the inclusion criteria will be excluded. If consensus is not reached between EM and BC, the third reviewer (GK) will be consulted. Deliberations will continue until at least two reviewers agree on admitting or omitting a paper. This will be based on whether the paper answers this review's research questions. The study selection process will be outlined in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.28
The data will be extracted from the selected studies by the two reviewers (EM and BC) using a data extraction tool they have developed (see Appendix II). The data to be mined from these papers include the author(s), year of publication, country of origin, aims/purpose, study population, sample size, methodology/study design, and key findings. The information extracted from the studies may change subject to the progression of the review with further insight into the data and its relation to the research questions. Any changes to the extraction tool will be outlined in the proposed review. Should there be any disagreement between EM and BC, GK will be consulted. Authors will be contacted to provide any clarifying information deemed necessary.
The results will be presented in a table with the above details provided. These will, however, be grouped according to the treatment decision they address and the treatment category they fall within as outlined by Broeckaert's conceptual framework26 for decision-making at the end of life (see Appendix II). A narrative summary of the results will be provided.
Librarians at Fisher Library, University of Sydney, for their help with the initial development of the search strategy.
Appendix I: Search strategy
Appendix II: Data extraction instrument
1. Brennan FB, Carr DB, Cousins MB. Pain management: a fundamental human right. Anesth Analg
2007; 105 (1):205–221.
2. Lau R, O’Connor M. Behind the rhetoric: is palliative care
equitably available to all? Contemp Nurse
2012; 43 (1):56–63.
3. Palliative Care
Australia. National palliative care
ed. [Internet]. 2018 [cited 22 Jan 2019]. Available from: https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/11/PalliativeCare-National-Standards-2018_Nov-web.pdf
4. Victorian Numbered Acts. Voluntary Assisted Dying Act 2017 (NO. 61 OF 2017) [Internet]. 2017 [cited 26 Jul 2019]. Available from: http://www5.austlii.edu.au/au/legis/vic/num_act/vada201761o2017348/s3.html#voluntary_assisted_dying
5. Australian Government Department of Health. National palliative care
strategy 2018 [Internet]. 2018 [cited 23 Jan 2019]. Available from: https://www.health.gov.au/resources/publications/the-national-palliative-care-strategy-2018
6. Kirby E, Lwin Z, Kenny K, Broom A, Birman H, Good P. It doesn’t exist…”: negotiating palliative care
from a culturally and linguistically diverse patient and caregiver perspective. BMC Palliat Care
2018; 7 (90):1–10.
7. Pew Research Centre. The future of world religions: population growth projections, 2010-2050: Why Muslims are rising fastest and the unaffiliated are shrinking as a share of the world's population [Internet]. 2015 [cited 13 Mar 2019]. Available from: https://assets.pewresearch.org/wp-content/uploads/sites/11/2015/03/PF_15.04.02_ProjectionsFullReport.pdf
8. Koenig HG, King DE, Carson VB. Handbook of religion and health. 2nd ed.2012; New York: Oxford University Press, 1169 p.
9. Bulow H-H, Sprung CL, Reinhart K, Prayag S, Du B, Armaganidis A, et al. The world's major religions’ point of view on end-of-life
decisions in the intensive care unit. Intensive Care Med
2008; 34 (3):423–430.
10. Padela AI, Zaidi D. The Islamic tradition and health inequities: a preliminary conceptual model based on a systematic literature review of Muslim health-care disparities. Avicenna J Med
2018; 8 (1):1–13.
11. Del Pozo PR, Fins JJ. Death, dying and informatics: misrepresenting religion on MedLine. BMC Med Ethics
2005; 6 (1):e6.
12. Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life
care for minority patients. J Am Geriatr Soc
2002; 50 (1):182–190.
13. Barnato AE, Anthony DL, Skinner J, Gallagher PM, Fisher E. Racial and ethnic differences in preferences for end-of-life
treatment. J Gen Intern Med
2009; 24 (6):695–701.
14. Bestall NA, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care
by patients, carers and health and social care professionals. Palliat Med
2004; 18 (1):525–542.
15. Karim K, Bailey M, Tunna K. Non-white ethnicity and the provision of specialist palliative care
services: factors affecting doctors’ referral patterns. Palliat Med
2000; 14 (6):471–478.
16. Anderson KO, Richman SP, Hurley J, Palos G, Valero V, Mendoza TR, et al. Cancer pain management among underserved minority outpatients. Cancer
2002; 94 (8):2295–2304.
17. Wright AA, Keating NL, Ayanian JZ, Chrischilles EA, Kahn KL, Ritchie CS, et al. Family perspectives on aggressive cancer care near the end of life. JAMA
2016; 315 (3):284–292.
18. McGrath P, Vun M, Mcleod L. Needs and experiences of non-English-speaking hospice patients and families in an English-speaking country. Am J Hosp Palliat Care
2001; 18 (5):305–312.
19. Balboni TA, Paulk ME, Balboni M, Phelps AC, Loggers EL, Wright AA, et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol
2010; 28 (3):445–452.
20. Kristiansen M, Irshad T, Worth A, Bhopal R, Lawton J, Sheikh A. 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):1–19.
21. De Pentheny O’Kelly C, Urch C, Brown EA. The impact of culture and religion on truth telling at the end of life. Nephrol Dial Transplant
2011; 26 (12):3838–3842.
22. Phelps AC, Maciejewski PK, Nilsson M, Balboni TA, Wright AA, Paulk ME, et al. Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer. JAMA
2009; 301 (11):1140–1147.
23. Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc
2005; 53 (4):711–719.
24. Davidson JE, Boyer ML, Casey D, Matzel SC, Walden D. Gap analysis of cultural and religious needs of hospitalised patients. Crit Care Nurs Q
2008; 31 (2):119–126.
25. Cohen J, Delden JV, Mortier F, Lofmark R, Norup M, Cartwright C, et al. Influence of physicians’ life stance on attitudes to end-of-life
decisions and actual end-of-life
decision making in six countries. J Med Ethics
2008; 34 (4):247–253.
26. Broeckaert B. Payne S, Seymour J, Ingleton C. Treatment decisions
at the end of life: a conceptual framework. Palliative care nursing: principles and evidence for practice
. Milton Keynes: Open University Press; 2011. 402–421.
27. Peters MDJ, Godfrey C, McInerney P, Baldini Soares C, Khalil H, Parker D. Aromataris E, Munn Z. Chapter 11: Scoping reviews. JBI, JBI Reviewer's Manual [Internet]
28. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med
2009; 151 (4):264–269.