Introduction
The World Health Organization (WHO) defines palliative care (PC) as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual” (WHO 2020a). Only 40% of countries stated that at least half of patients in need of PC received it, according to a 2019 WHO noncommunicable disease survey of 194 member states (WHO 2020b). This highlights significant gaps in access to essential PC globally. Nearly 60 million people need PC each year, with an estimated 25.7 million people needing PC in their last year of life. Most people requiring PC also live in low- and middle-income countries, many of these countries are also home to the majority of people of Muslim faith (Clark et al. Reference Clark, Baur, Clelland, Garralda, López-Fidalgo, Connor and Centeno2020; WHO 2020a; WorldAtlas 2019). However, there is a significant deficit of PC services in countries with Muslim majority (Al-Awamer and Downar Reference Al-Awamer and Downar2014; Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021). Islam holds the sanctity of human life in high esteem and considers its preservation necessary. Nevertheless, the obligation to apply life-prolonging measures may not be considered imperative when these are futile, particularly in cases of untreatable illness accompanied by significant distress and suffering. While euthanasia is strictly forbidden in Islamic law, withholding or withdrawing life-prolonging treatment is generally considered unacceptable in many Muslim societies (Al-Shahri Reference Al-Shahri2016; Aramesh and Shadi Reference Aramesh and Shadi2007; Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007; Hosseinzadeh and Rafiei Reference Hosseinzadeh and Rafiei2019; Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021). However, in Islamic law, human dignity is considered inviolable, and decisions to withhold life-sustaining treatments (LSTs), such as cardiopulmonary resuscitation, are primarily based on the anticipated futility of the intervention. Furthermore, (LSTs) may only be withdrawn if their continuation would not meaningfully contributeto the patient’s survival, with the intention being not to hasten death but to avoid futilely aiming at prolonging life. While depriving a person of vital needs such as food and water is normally considered an act of passive killing, withdrawing and/or withholding futile (and potentially harmful) artificial nutrition and hydration is considered appropriate, particularly in dying patients with far-advanced cancer (Al-Shahri Reference Al-Shahri2016; Chamsi-Pasha and Albar Reference Chamsi-Pasha and Albar2017; Daar and Khitamy Reference Daar and Khitamy2001). In some Muslim societies, the decision not to resuscitate or to withhold or withdraw other LSTs requires the agreement of at least 3 physicians and a detailed medical explanation. It is considered to be a pure medical decision (IIF-Academy 1986; Gouda et al. Reference Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban, Alsalolami, Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban and Alsalolami2018; Islam Question & Answer 2008). While exploring all treatment options is essential for clinical decisions at the end of life (EOL), some decisions made for Muslim patients may neglect critical considerations such as the proportionality of treatment benefits, as well as patient autonomy and family preferences and cost. This can lead to interventions that may not align with the patient’s values or best interests (Almansour et al. Reference Almansour, Seymour, Aubeeluck, Almansour, Seymour and Aubeeluck2019; Baharoon et al. Reference Baharoon, Al-Jahdali, Al-Sayyari, Tamim, Babgi and Al-Ghamdi2010; Fearon et al. Reference Fearon, Kane, Aliou and Sall2019). The transition from curative to PC is generally challenging for patients and their families. In Muslim populations, this difficulty may be compounded by the suboptimal explanation of the concept of PC and its absolute difference from the concept of euthanasia, which contradicts religious and cultural beliefs that emphasize the hope for a cure and the value of life-prolonging measures. Additionally, concerns about how such decisions may be perceived within their community may add another layer of complexity (Almansour et al. Reference Almansour, Seymour, Aubeeluck, Almansour, Seymour and Aubeeluck2019; Fearon et al. Reference Fearon, Kane, Aliou and Sall2019; Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021). The principles of PC, namely affirming life, relieving suffering, allowing natural death, and treating the dying with compassion and dignity are perfectly aligned with Islamic theology (Al-Shahri Reference Al-Shahri2016). Nevertheless, a number of barriers may prevent Muslim patients from receiving PC services. These include health system issues such as a lack of resources for PC in Muslim-majority countries and a lack of culturally sensitive training for health-care professionals as well as, a lack of awareness of cultural perspectives on death in non-Muslim-majority countries. Furthermore, Muslim patients and their families may refuse PC if the aims and advantages of PC were not optimally explained to them. Challenges could also arise when PC practices appear to contradict religious expectations, for example when futile life-sustaining measures are perceived as really life-sustaining (Al-Awamer and Downar Reference Al-Awamer and Downar2014; Almansour et al. Reference Almansour, Seymour, Aubeeluck, Almansour, Seymour and Aubeeluck2019; Jansky et al. Reference Jansky, Owusu-Boakye and Nauck2017; Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021).
Review questions
The aim of this scoping review is to provide an overview of the current issues that have been studied and influence access to and use of PC, as well as the EOL decisions by people of Muslim faith in countries with and without a Muslim majority. This includes the following research questions:
• What are the preferences and practices of people of Muslim faith regarding EOL decisions in countries with and without Muslim majorities?
• How and who makes decisions or discusses EOL care by people of Muslim faith in countries with and without a Muslim majority?
• What factors and barriers have been studied that are associated with the use of PC by people of Muslim faith at the EOL in countries with and without a Muslim majority?
• What interventions have been studied to facilitate the use of PC at the EOL among people of Muslim faith in countries with and without a Muslim majority?
Inclusion criteria
Population
Studies involving adult Muslim patients, their families or healthy Muslim individuals, Islamic scholars or imams, and Muslim health-care professionals, Muslim students of health-care professions, or non-Muslim health-care professionals caring for Muslim patients were included. Studies that included these and other groups of participants were included if they provided data for the target group alone.
Concept
The scoping review considered the use of PC and related barriers and facilitators, as well as preferences and decisions at the EOL, as described by Ruppert (Reference Ruppert, Ruppert and Heindl2019). These include euthanasia (active euthanasia), “letting die” (withdrawal or withholding of one or more LSTs or medications), assisted suicide, EOL therapy, palliative sedation, and fasting to death or voluntary stopping eating and drinking.
Context
This review included studies conducted in a treatment setting, such as a hospital, hospice, or PC unit, and studies conducted in a non-treatment setting, including long-term care facilities, community care, or other settings. Studies conducted in countries with or without a Muslim majority were also included. There was no restriction on the publication date.
Types and language of evidence sources and publications
Qualitative and quantitative empirical studies were included, regardless of the number of participants. Study protocols and studies published only as abstracts were excluded. Studies written in English, German, and Arabic were included.
Methods
This scoping review was conducted using the Joanna Briggs Institute (JBI) methodology (Aromataris and Munn Reference Aromataris and Munn2020).
Search strategy
The electronic literature search for this scoping review was conducted in the following databases: MEDLINE (via PubMed), CINAHL, The Cochrane Central Register of Controlled Trials (CENTRAL), and Web of Science. Keywords from relevant articles and Medical Subject Headings were used to develop the search strategies. The search strategies for MEDLINE (via PubMed) are listed in Online Appendix 1 and were modified as necessary for other databases. In addition, the bibliographies of the included studies were searched to identify further potentially relevant studies. The search was not restricted by language or year of publication.
Evidence sources, screening, and selection
The study selection process was conducted in the context of the PRISMA Extension for Scoping Reviews (PRISMA-ScR) methodology (Tricco et al. Reference Tricco, Lillie, Zarin, O’Brien, Colquhoun, Levac, Moher, Peters, Horsley, Weeks, Hempel, Akl, Chang, McGowan, Stewart, Hartling, Aldcroft, Wilson, Garritty, Lewin, Godfrey, Macdonald, Langlois, Soares-Weiser, Moriarty, Clifford, Tunçalp and Straus2018) and consisted of 4 stages: identification, preselection, eligibility, and inclusion. The reasons for exclusion of studies were documented in the PRISMA-ScR flow diagram. The steps of preselection, eligibility, and inclusion were carried out by 2 reviewers, namely I.A.S. and L.-M.W. In the case of disagreement regarding the inclusion or exclusion of a study, a discussion was held between the 2 reviewers. If no agreement was reached, a third reviewer, either S.F. or G.M., was consulted. When at least 2 reviewers agreed, then the study was included or excluded. The selection process is shown in a PRISMA-ScR flow diagram. For the selection process, we used Rayyan (Ouzzani et al. Reference Ouzzani, Hammady, Fedorowicz and Elmagarmid2016), a web and mobile app for systematic reviews.
Data extraction
For the data extracted from the evidence, a data extraction tool based on the “JBI data extraction tool for information on the source of the evidence characteristics and results” (Aromataris and Munn Reference Aromataris and Munn2020) was developed and used to extract the data (see Online Appendix 2 for data extraction sheet). The following data were extracted: author, year of publication, title of study, country of study, methodology and design of the evidence, objectives of the study, population and sample size, study design, context and setting of the study, interventions (including details such as duration of intervention), individuals or groups compared, and results related to the questions of this scoping review. To test the completeness and applicability of the tool, the data extraction process was piloted for 6 studies. The piloting process was carried out by I.A.S. and L.-M.W. in a blinded manner. The data extraction process was performed by one reviewer (I.A.S.) and the extracted data were reviewed by other reviewers: 34 studies by R.M., 13 studies by S.F., and 12 studies by L-M.W. (JBI recommendations) (Aromataris and Munn Reference Aromataris and Munn2020).
Analysis and presentation of results
Data extraction sheets were analyzed, summarized, and coded according to the objectives of the scoping review. Results were analyzed descriptively and quantitatively. Qualitative results were analyzed using the process model of inductive category formation and deductive category application according to Mayring and Fenzl (Reference Mayring, Fenzl, Baur and Blasius2019) and coded using MAXQDA software (VERBI-Software 2022). A narrative summary is provided to summarize the findings in relation to the objectives and questions of the scoping review and where appropriate, presented in tables. Conclusions and recommendations for research were drawn at the end of the work.
Results
Search results
The electronic search identified 1545 articles, and 23 articles were identified through other sources (screening the reference lists of the included studies). After removing duplicates, 1348 articles remained. These were screened using the title and abstract. In the next step, 274 articles were assessed for eligibility using the full text. Of these, 60 studies met the inclusion criteria and were included in the scoping review (Abbas et al. Reference Abbas, Al Ahmadi, Alharby, Aman, Mohamed, Tawlah, Abbas, Al Ahmadi, Alharby, Aman, Mohamed and Tawlah2021; Abudari et al. Reference Abudari, Hazeim and Ginete2016; AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021; Aghababaei and Aghababaei Reference Aghababaei and Aghababaei2012; Ahaddour et al. Reference Ahaddour, van den, En and Broeckaert2017, Reference Ahaddour, Van den, En and Broeckaert2018; Ahmed and Kheir Reference Ahmed and Kheir2006; Ahmed et al. Reference Ahmed, Kheir, Abdel Rahman, Ahmed and Abdalla2001, Reference Ahmed, Sorum and Mullet2010; Al-Awamer and Downar Reference Al-Awamer and Downar2014; AlFayyad et al. Reference AlFayyad, Al-Tannir, AlEssa, Heena and Abu-Shaheen2019; Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009; Almansour et al. Reference Almansour, Seymour, Aubeeluck, Almansour, Seymour and Aubeeluck2019, Reference Almansour, Ahmad and Alnaeem2020; Almuzaini et al. Reference Almuzaini, Salek, Nicholls and Alomar1998; Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017; Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019; Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018; Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019; Askar et al. Reference Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie, Shah, Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie and Shah2000; Askarian et al. Reference Askarian, Ebrahimi, Tabei, Askarian, Ebrahimi and Tabei2020; Baeke et al. Reference Baeke, Wils and Broeckaert2012; Baharoon et al. Reference Baharoon, Al-Jahdali, Al-Sayyari, Tamim, Babgi and Al-Ghamdi2010; Bahramnezhad et al. Reference Bahramnezhad, Cheraghi and Mehrdad2018; Bani Melhem et al. Reference Bani Melhem, Wallace, Adams, Ross and Sudha2020; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020; Borhani et al. Reference Borhani, Hosseini and Abbaszadeh2014; Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007; Colak et al. Reference Colak, Oguz, Yazilitas, Imamoglu, Altinbas, Colak, Oguz, Yazilitas, Imamoglu and Altinbas2014; Duffy et al. Reference Duffy, Jackson, Schim, Ronis, Fowler, Duffy, Jackson, Schim, Ronis and Fowler2006; Duivenbode et al. Reference Duivenbode, Hall, Padela, Duivenbode, Hall and Padela2019; El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020; Farid et al. Reference Farid, Kaleybar, Ghobadi and Mousavi2017; Fearon et al. Reference Fearon, Kane, Aliou and Sall2019, Reference Fearon, Hughes, Brearley, Fearon, Hughes and Brearley2021; Gouda et al. Reference Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban, Alsalolami, Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban and Alsalolami2018; Hammami et al. Reference Hammami, Al Gaai, Hammami, Attala, Hammami, Al Gaai, Hammami and Attala2015, Reference Hammami, Hammami, Amer, Khodr, Hammami, Hammami, Amer and Khodr2016; Hamouda et al. Reference Hamouda, Emanuel and Padela2021; Hosseinzadeh and Rafiei Reference Hosseinzadeh and Rafiei2019; Iyilikci et al. Reference Iyilikci, Erbayraktar, Gokmen, Ellidokuz, Kara, Gunerli, Iyilikci, Erbayraktar, Gokmen, Ellidokuz, Kara and Gunerli2004; Jansky et al. Reference Jansky, Owusu-Boakye and Nauck2017; Khalid et al. Reference Khalid, Hamad, Khalid, Kadri, Qushmaq, Khalid, Hamad, Khalid, Kadri and Qushmaq2013, Reference Khalid, Imran, Yamani, Imran, Akhtar and Khalid2021; Muishout et al. Reference Muishout, Wiegers, Popp-Baier and van Laarhoven2018, Reference Muishout, La Croix, Wiegers and van Laarhoven2022a, Reference Muishout, Topcu, La Croix, Wiegers and van Laarhoven2022b; Naseh and Heidari Reference Naseh and Heidari2017; O’Neill et al. Reference O’Neill, Yaqoob, Faraj and O’Neill2017; Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Francke, Pasman and Onwuteaka-Philipsen2017; Ouanes et al. Reference Ouanes, Stambouli, Dachraoui, Ouanes-Besbes, Toumi, Ben Salem, Gahbiche, Abroug, Ouanes, Stambouli, Dachraoui, Ouanes-Besbes, Toumi, Ben Salem, Gahbiche and Abroug2012; Ozcelik et al. Reference Ozcelik, Tekir, Samancioglu, Fadiloglu and Ozkara2014; Razban et al. Reference Razban, Iranmanesh, Aliabadi, Forouzi, Razban, Iranmanesh, Aliabadi and Forouzi2016; Saeed et al. Reference Saeed, Kousar, Aleem, Khawaja, Javaid, Siddiqui, Holley, Saeed, Kousar, Aleem, Khawaja, Javaid, Siddiqui and Holley2015; Vattanavanit et al. Reference Vattanavanit, Uppanisakorn, Bhurayanontachai and Khwannimit2017; Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021; Wolenberg et al. Reference Wolenberg, Yoon, Rasinski and Curlin2013; Yildirim Reference Yildirim2020; Zafar et al. Reference Zafar, Hafeez, Jamshed, Shah, Quader and Yusuf2016; Zamer and Volker Reference Zamer and Volker2013). The study selection process is shown in the PRISMA-ScR flow diagram (Figure 1).
Figure 1. PRISMA-ScR flow diagram. PRISMA-ScR, PRISMA Extension for Scoping Reviews.
Review findings
Description of the included studies
Country of study
Of the 60 included studies, 43 were conducted in Muslim-majority countries (Saudi Arabia (n = 14), Iran (n = 8), Turkey (n = 6), Bahrain (n = 3), Kuwait (n = 2), Mauritania (n = 2), Sudan (n = 2), Jordan (n = 2), and one study each in Tunisia, Pakistan, Lebanon, the United Arab Emirates, and the Palestinian Territories) and 16 in non-Muslim-majority countries (the USA (n = 6), Belgium (n = 3), the Netherlands (n = 4), and one each in Germany, Canada, and Thailand). One study was conducted as a multinational study (an international online survey).
Participants
Twenty-five studies involved health-care professionals as follows: physicians (n = 14), nurses (n = 6), PC experts (n = 2), health-care professionals without an Islamic background (n = 1), and others (n = 2). Other studies involved students of health-care professions (nursing and medicine) (n = 7), patients (n = 9), imams (n = 1), and religious leaders (n = 1), and the remaining studies involved others.
Years published
Studies were published between 1998 and 2022, where most of the articles were published recently.
Study design
A quantitative study design was used in 36 studies, a qualitative study design was used in 17 studies, and 7 studies used a mixed-methods design. Further details are in Table 1.
Table 1. Description of included studies
Preferences and practices of people of Muslim faith regarding EOL decisions*
The majority of studies (n = 36) investigated preferences and practices regarding EOL decisions. These included withdrawal or withholding of one or more LSTs or medications (n = 30), withholding artificial nutrition or/and hydration (n = 5), euthanasia (n = 8), assisted suicide (n = 7), therapy at EOL (n = 3), and terminal and palliative sedation (n = 2). Voluntary stopping of eating and drinking was not reported in any of the included studies. Withdrawal of one or more LSTs or medicines was reported to be acceptable in half of the studies addressing this issue. While the results on attitudes and practices toward withholding one or more LSTs or medications present a mixed picture, they reflect varying levels of acceptance, refusal, and diverse preferences across studies. In contrast, all studies investigating euthanasia, assisted suicide, or withholding artificial nutrition and/or hydration reported negative attitudes (refusal) toward these practices. Three studies investigated physicians’ attitudes and practices regarding therapy at EOL, and 2 of them reported acceptability in this population. Similarly, 2 studies investigated terminal or palliative sedation and reported positive attitudes (acceptance) toward it. Results on one or more types of decisions at EOL possible in the same study. Table 2 provides details of EOL preferences and practices and shows the studies with negative (refusal) and positive (acceptance) attitudes toward EOL decisions described in our review.
Table 2. Attitudes and practices toward EOL decisions, frequency, and source study
Differences and considerations related to attitudes and practices or studies with different findings on the same type of EOL decision
One study (Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020) mentioned majority acceptance for withdrawal/withholding of one or more treatments, but not for fluid management, noninvasive mechanical ventilation, and enteral nutrition, another study (Ouanes et al. Reference Ouanes, Stambouli, Dachraoui, Ouanes-Besbes, Toumi, Ben Salem, Gahbiche, Abroug, Ouanes, Stambouli, Dachraoui, Ouanes-Besbes, Toumi, Ben Salem, Gahbiche and Abroug2012) reported that mechanical ventilation, nutrition, and sedation were never withdrawn. Another study (Wolenberg et al. Reference Wolenberg, Yoon, Rasinski and Curlin2013) stated that Muslim physicians were significantly more likely than Catholic physicians and non-evangelical Protestant physicians to oppose withdrawing and withholding of artificial nutrition and hydration. Another study (Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007) mentioned that physiotherapists (one of the study groups) were more likely to agree with euthanasia than physiotherapy students.
Legalization of euthanasia, assisted suicide, or withholding/withdrawal of life-sustaining treatments
Some studies reported data on whether euthanasia, assisted suicide, or withholding/withdrawal of LSTs should be legalized, and attitudes were as follows:
Regarding the legalization of euthanasia or/and assisted suicide (n = 5):
• Majority disagreement (refusal) (n = 3) (Ahmed and Kheir Reference Ahmed and Kheir2006; Ahmed et al. Reference Ahmed, Kheir, Abdel Rahman, Ahmed and Abdalla2001; Askar et al. Reference Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie, Shah, Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie and Shah2000).
• Varied preferences (n = 2) (Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007; Yildirim Reference Yildirim2020).
Regarding the legalization of withholding or withdrawal of LSTs (n = 6):
• Absolute majority agreement (acceptance) (n = 1) (Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020).
• Varied preferences (n = 4) (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017; Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007; Ozcelik et al. Reference Ozcelik, Tekir, Samancioglu, Fadiloglu and Ozkara2014; Yildirim Reference Yildirim2020).
• Refusal of the legalization (n = 1) (Askar et al. Reference Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie, Shah, Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie and Shah2000).
Another study mentioned that Muslim physicians were less agreeable for legalization than Christians and Hindus (Askar et al. Reference Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie, Shah, Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie and Shah2000), and another study (El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020) indicated opposition to euthanasia (active) by legalists from the head of the Lebanese order of physicians. In addition, one study (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017) stated that when legalizing the withholding of LSTs (do not resuscitate), the following points should be taken into consideration: applicable to all potential patient scenarios, each case considered separately, full responsibility of the family, protection of health-care providers, social context of the patient, age of the patient, and priority of religion.
Factors and reasons for positive attitudes (acceptance) toward euthanasia or assisted suicide, or withholding/withdrawal of life-sustaining treatments
The following factors were identified as reasons associated with acceptance of euthanasia or assisted suicide. Further details are in Table 3:
1. Factors related to physicians and health-care professionals (including students of health professions) (n = 16): professional ethics or professional self-concept (n = 6), gender (females) (n = 3), having a clinical experience (n = 2), year of study (more acceptance in third and fourth year) (n = 1), atheistic viewpoint (n = 1), euthanasia for self (n = 2), high level of empathy (n = 1), graduates of foreign schools (n = 1), this study was conducted in Sudan, which means that the authors may have meant countries outside the Arab world, such as EU countries and American countries, as well as other non-Arab countries, having a Master’s degree (n = 1), age (30–39 years) (n = 1), supportive nurse behavior toward euthanasia requests (n = 1), and practicing of faith within the scope of science (n = 1).
Table 3. Factors and reasons for positive attitudes (acceptance) toward euthanasia, assisted suicide, or withholding/withdrawal of LSTs, frequency, and source study
2. Principles of good death and dying (n = 15): autonomy and self-determination (n = 9), quality of life at the EOL (n = 8), helping patients to die with dignity (n = 2), ending the patient’s suffering (n = 2), reducing helplessness and hopelessness (n = 1), and LSTs that can be humiliating to the patient (n = 1).
3. Patient-related reasons (n = 14): these include intolerable suffering (unbearable pain) (n = 4), imminent threat of death or imminent death (n = 2), type and severity of suffering (n = 1), multiple failed resuscitations (n = 1), life-sustaining machines that are often painful for the patient (n = 1), irreversible, fatal condition (n = 1), metastatic cancer not responding to treatment (n = 1), irreversible coma (n = 1), elderly patient (n = 1), related effects (old, patient’s request, suffering, dependent, and incurable) (n = 1), extreme pain and total dependency (n = 1), in case of total dependence (n = 1), confirmation of brain death (n = 1), McCabe score more than 1 (n = 1), only if bedridden, seriously ill, unable to take medication orally (n = 1), absence of a life prognosis for the patient (n = 1), and poverty (n = 1) (the McCabe score is a prognosis tool used to assess the severity of disease and predict patient outcomes) (McCABE and Jackson Reference McCABE and Jackson1962).
4. Family-related factors (n = 8): burdens on the family (n = 3), consent of the family (n = 2), knowledge of health care by family members (n = 1), application of euthanasia by relatives to unconscious patients (n = 1), and a kind of dedication (give others another chance to live).
5. Medical justifications (n = 7): medical futility (no benefits from these treatments) (n = 3), support or agreement from 2 or more physicians (n = 2), approval of medical committee (n = 1), availability of alternatives to curative care (e.g. hospice care) (n = 1), high annual proportion of terminally ill patients in ICU (n = 1), implementation by a committee of health-care professionals (n = 1), unavailability of intensive care unit (ICU) beds (n = 1), and the need of organ donation and transplantation (n = 1).
6. Religion and religious arguments (n = 4).
7. Others: (n = 3): legalization of euthanasia (n = 1), individual perspectives on a good death (better to take her home to see everyone and have a peaceful passing) (n = 1), and age (of healthy women) (middle-aged) (n = 1).
Factors and reasons for negative attitudes (refusal) toward euthanasia or assisted suicide, or withholding/withdrawal of life-sustaining treatments
The following factors were reported as reasons associated with refusal of euthanasia or assisted suicide and other kinds of terminal care: religion, religiosity and theological beliefs and arguments (n = 25), ethical and moral considerations (n = 12), medical and practical considerations (n = 10), family-related factors (n = 8), physician-related factors (n = 6), patient-related factors (n = 5), social and cultural factors (n = 5), legal concerns and regulatory issues (n = 4), and others (n = 7). Reasons for refusal are explained in Table 4.
Table 4. Factors and reasons for negative attitudes (refusal) toward euthanasia, assisted suicide, or withholding/withdrawal of LSTs, frequency, and source study
Factors with no significant or specified association with euthanasia/assisted suicide, or withholding/withdrawal of life-sustaining treatments
The following factors were reported to be correlated with EOL care decisions, but the tendency of the correlation was not reported: principles of a good death and quality of life (n = 3) (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017; Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020), cultural differences (n = 3) (Al-Awamer and Downar Reference Al-Awamer and Downar2014; Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018; Zamer and Volker Reference Zamer and Volker2013), treatment costs (n = 2) (Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018), religion and religious beliefs (n = 2) (Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019; Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018), hospital policy (n = 1) (Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018), access to PC (n = 1) (Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018), limited ICU space (n = 1) (Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019), medical considerations (risk of vegetative state (n = 1) (Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019); unavailability of ICU beds, disease prognosis, drug addiction, and comorbid illness (n = 1) (Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020)), patient and family understanding of the concept of brain death (n = 1) (Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019), patient’s age (n = 1) (Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020), economic situations of family (n = 1) (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017), and legal concerns (n = 1) (Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019).
Other studies reported that the following factors and reasons showed no significant association or were without association: gender (n = 5) (Aghababaei and Aghababaei Reference Aghababaei and Aghababaei2012; Ahmed et al. Reference Ahmed, Sorum and Mullet2010; Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020; Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007), age (n = 4) (AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021; Aghababaei and Aghababaei Reference Aghababaei and Aghababaei2012; Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009; Cavlak et al. Reference Cavlak, Aslan, Gurso, Yagci, Yeldan, Cavlak, Aslan, Gurso, Yagci and Yeldan2007), religion and religious beliefs (n = 3) (AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021; Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020), medical considerations (dialysis duration (n = 1) (Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009); incurability (n = 1) (Ahmed et al. Reference Ahmed, Sorum and Mullet2010)), health-care professionals related factors (job role and experiences (n = 2) (AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020), educational level (n = 1) (AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021), and knowledge of Arabic language (n = 1) (AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021)), economic status of patient/family (n = 1) (Naseh and Heidari Reference Naseh and Heidari2017), principles of a good death and quality of life (n = 1) (Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009), and demographic factors (marital status (n = 3) (AbuYahya et al. Reference AbuYahya, Abuhammad, Hamoudi, Reuben, Yaqub, AbuYahya, Abuhammad, Hamoudi, Reuben and Yaqub2021; Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009; Naseh and Heidari Reference Naseh and Heidari2017), working status (n = 1) (Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009), family size (n = 1) (Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009), and self-esteem and death anxiety (n = 1) (Farid et al. Reference Farid, Kaleybar, Ghobadi and Mousavi2017)).
Confidence in making EOL care decisions and possible influencing factors
One study (Baharoon et al. Reference Baharoon, Al-Jahdali, Al-Sayyari, Tamim, Babgi and Al-Ghamdi2010) investigated differences in certainty about the use of life support and life-sustaining measures in the event of cardiac arrest and possible influencing factors. This study found that the majority of participants were certain about their preferences and only 2 factors, younger age and having more than 5 children, were associated with a positive or negative effect, respectively.
Hospice and PC (use and preferences)
Eight studies reported findings on hospice and PC (use and preferences). Three studies (Almuzaini et al. Reference Almuzaini, Salek, Nicholls and Alomar1998; Duivenbode et al. Reference Duivenbode, Hall, Padela, Duivenbode, Hall and Padela2019; Zafar et al. Reference Zafar, Hafeez, Jamshed, Shah, Quader and Yusuf2016) reported preferences for palliative/hospice, and all of them reported majority acceptance of recommending or continuing care in a hospice or PC unit. One of these studies (Duivenbode et al. Reference Duivenbode, Hall, Padela, Duivenbode, Hall and Padela2019) found that physicians who had read books on Islamic bioethics were less likely to recommend hospice care. Characteristics of patients who should receive PC were described in another study (Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021) and included: patients in a vegetative state, no further curative options, poor prognosis, patients with a terminal diagnosis, impaired cognition, older age, and terminally ill. Three studies elaborated on limited use (Jansky et al. Reference Jansky, Owusu-Boakye and Nauck2017; Khalid et al. Reference Khalid, Imran, Yamani, Imran, Akhtar and Khalid2021) and limited provision (Fearon et al. Reference Fearon, Kane, Aliou and Sall2019) of PC services in this population. Another study (Vattanavanit et al. Reference Vattanavanit, Uppanisakorn, Bhurayanontachai and Khwannimit2017) reported that PC received, symptomatic treatment, pain control, and spiritual care were more likely to be received by Muslim patients compared to other patients (both without significant effect). Preferences regarding PC preferred to be received were listed in one study (Zafar et al. Reference Zafar, Hafeez, Jamshed, Shah, Quader and Yusuf2016), and the following preferences were reported by a majority to absolute majority of participants: spiritual and religious well-being (most important consideration), psychological counseling for emotional problems, and adequate pain control and symptom management. One study (Jansky et al. Reference Jansky, Owusu-Boakye and Nauck2017) identified the following reasons for admission to the PC unit: pain management, optimizing care networks, need for psychosocial support, lack of home care, and medical and nursing difficulties.
Factors influencing patient acceptance of opioid analgesic treatment
Reasons for refusing morphine were identified in 2 studies: one study (Colak et al. Reference Colak, Oguz, Yazilitas, Imamoglu, Altinbas, Colak, Oguz, Yazilitas, Imamoglu and Altinbas2014) highlighted religious beliefs and the desire to save morphine for later use, while fear of addiction was identified as a reason in both studies (Abudari et al. Reference Abudari, Hazeim and Ginete2016; Colak et al. Reference Colak, Oguz, Yazilitas, Imamoglu, Altinbas, Colak, Oguz, Yazilitas, Imamoglu and Altinbas2014).
Advanced care planning engagement and influencing factors and attitudes toward advance directives
One study (Bani Melhem et al. Reference Bani Melhem, Wallace, Adams, Ross and Sudha2020) examined engagement in advanced care planning (ACP) activities and reported that the majority of participants were not willing to engage in ACP activities and that the following factors were associated with a positive effect on engagement in ACP activities: knowledge of a person’s stated EOL preferences, knowledge of a deceased person who received aggressive or minimal treatment, experience with decision-making or EOL treatment, major surgery, experience with illness (bad/good health and serious illness), and awareness of ACP. Another study (AlFayyad et al. Reference AlFayyad, Al-Tannir, AlEssa, Heena and Abu-Shaheen2019) reported on physicians’ and nurses’ knowledge and attitudes toward advance directives for cancer patients and found positive attitudes, with the following factors being associated with positive attitudes: female gender and higher educational level (Masters and Ph.D.) and having more knowledge about advance directives, while the belief that advance directives reduce patients’ sense of hope was associated with negative attitudes.
Decision-making and decision-maker
Decision-making model
The preferred decision-making model was reported in 5 studies as follows: multidisciplinary decision (absolute majority) (El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020), shared decision-making (absolute majority) (Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018), physician paternalism no metrics (Muishout et al. Reference Muishout, La Croix, Wiegers and van Laarhoven2022a), multidisciplinary decision no metrics (Zamer and Volker Reference Zamer and Volker2013), shared decision, and consumerism with no clear conclusion on which model was preferred (Hamouda et al. Reference Hamouda, Emanuel and Padela2021).
Considerations within the decision-making process
Identified considerations included consultation with 2 physicians and 1 Muslim scholar (Zamer and Volker Reference Zamer and Volker2013), strong preference for a Muslim physician in EOL decision-making (Muishout et al. Reference Muishout, Topcu, La Croix, Wiegers and van Laarhoven2022b), emphasis on providing complete and clear information (El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020), the need for a signature from either the patient, surrogate, or family member (El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020), consequences for physicians (Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019), and the of support from an ethics committee for the majority (Iyilikci et al. Reference Iyilikci, Erbayraktar, Gokmen, Ellidokuz, Kara, Gunerli, Iyilikci, Erbayraktar, Gokmen, Ellidokuz, Kara and Gunerli2004). One study (Fearon et al. Reference Fearon, Kane, Aliou and Sall2019) mentioned that the following topics were not considered: the views of patients and families, costs, and likely benefits. Another study stated that making one’s own medical decisions was not a priority for respondents (Hammami et al. Reference Hammami, Al Gaai, Hammami, Attala, Hammami, Al Gaai, Hammami and Attala2015).
Decision-maker (practice)
Findings on who was involved in the decision-making process were reported in 10 studies, but only 4 studies provided metric data on this, of which 2 studies (Iyilikci et al. Reference Iyilikci, Erbayraktar, Gokmen, Ellidokuz, Kara, Gunerli, Iyilikci, Erbayraktar, Gokmen, Ellidokuz, Kara and Gunerli2004; Khalid et al. Reference Khalid, Imran, Yamani, Imran, Akhtar and Khalid2021) involved physicians in the absolute majority of cases. In the remaining 2 studies, the family was involved in the absolute majority of cases in one study (Khalid et al. Reference Khalid, Hamad, Khalid, Kadri, Qushmaq, Khalid, Hamad, Khalid, Kadri and Qushmaq2013), and the patients’ children were the main decision-makers in half of the cases in the other study (Khalid et al. Reference Khalid, Imran, Yamani, Imran, Akhtar and Khalid2021). Another study (Gouda et al. Reference Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban, Alsalolami, Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban and Alsalolami2018) reported that families and patients were not involved in the majority of cases. Other studies that did not report metrics on this topic and were conducted in Muslim-majority Middle Eastern (MME) countries reported the following involvements: nurses indirectly involved (O’Neill et al. Reference O’Neill, Yaqoob, Faraj and O’Neill2017), nurses had no active role (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017; O’Neill et al. Reference O’Neill, Yaqoob, Faraj and O’Neill2017), patients and families not involved (Borhani et al. Reference Borhani, Hosseini and Abbaszadeh2014), families (main decision-making unit in MME countries) (Al-Awamer and Downar Reference Al-Awamer and Downar2014), family (limited involvement) (O’Neill et al. Reference O’Neill, Yaqoob, Faraj and O’Neill2017), and family “without any real involvement of the patient” (Abudari et al. Reference Abudari, Hazeim and Ginete2016). In addition, one of these studies reported that the social worker had no involvement and the hospital Muslim chaplain had a minimal role (Khalid et al. Reference Khalid, Hamad, Khalid, Kadri, Qushmaq, Khalid, Hamad, Khalid, Kadri and Qushmaq2013).
Who should decide or be involved in the decision-making process
Ten studies reported on who should decide or be involved in the decision-making process and showed the following results.
Physicians and nurses (n = 10)
Physicians should decide or be involved in the decision-making process for the majority or absolute majority of participants in (n = 7) studies (Al-Jahdali et al. Reference Al-Jahdali, Bahroon, Babgi, Tamim, Al-Ghamdi and Al-Sayyari2009; Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017; Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019; Askar et al. Reference Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie, Shah, Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie and Shah2000; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020; El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020; Gouda et al. Reference Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban, Alsalolami, Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban and Alsalolami2018), physicians for a significant part (n = 1) (Abbas et al. Reference Abbas, Al Ahmadi, Alharby, Aman, Mohamed, Tawlah, Abbas, Al Ahmadi, Alharby, Aman, Mohamed and Tawlah2021), one of which stated that 3 physicians were needed to make this decision by an absolute majority (Gouda et al. Reference Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban, Alsalolami, Gouda, Alrasheed, Ali, Allaf, Almudaiheem, Ali, Alghabban and Alsalolami2018), while another one stated that more than one “trusted” physician was needed for the majority participants (Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019). Two other studies (Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019; Hammami et al. Reference Hammami, Al Gaai, Hammami, Attala, Hammami, Al Gaai, Hammami and Attala2015) stated that physicians should decide or be involved, but these did not include metrics on this. One study (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017) reported that nurses could play a role in the decision-making process (no metrics reported on this), and another study (El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020) mentioned that nurses should be involved for the absolute majority of respondents.
Family and relatives (n = 8)
Family and relatives should be involved for the absolute majority (n = 2) (Alshamsi et al. Reference Alshamsi, Chaaban, Alrukhaimi, Bernieh, Bakoush, Alshamsi, Chaaban, Alrukhaimi, Bernieh and Bakoush2018; El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020), and for a significant part (n = 2) (Askar et al. Reference Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie, Shah, Askar, Ben Nakhi, Al-Rashidi, Al-Musabbahie and Shah2000; Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020), family (portion not stated) in 2 other studies (Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019; Hammami et al. Reference Hammami, Hammami, Amer, Khodr, Hammami, Hammami, Amer and Khodr2016), and first relative in case of coma (portion not stated) in one other study (Hammami et al. Reference Hammami, Al Gaai, Hammami, Attala, Hammami, Al Gaai, Hammami and Attala2015). Another study (Alrimawi et al. Reference Alrimawi, Saifan, Abdelkader and Batiha2017) stated that the family did not have the right of choice in the decision-making process (portion not specified).
Patients (n = 4)
Patients should be involved in the decision-making process in 4 studies as following: patient for absolute majority (n = 1) (Alsaati et al. Reference Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel, Alamri, Alsaati, Aljishi, Alshamakh, Banjar, Basharaheel and Alamri2019), patient or their legal representatives for two-thirds majority (n = 1) (Baykara et al. Reference Baykara, Utku, Alparslan, Arslantas, Ersoy, Baykara, Utku, Alparslan, Arslantas and Ersoy2020), for nearly half (n = 1) (Abbas et al. Reference Abbas, Al Ahmadi, Alharby, Aman, Mohamed, Tawlah, Abbas, Al Ahmadi, Alharby, Aman, Mohamed and Tawlah2021), and patient portion not stated (n = 1) (Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019).
Others (n = 5)
Others should decide or be involved in the decision-making process and these are listed in Table 5.
Table 5. Others should be involved in the decision-making process
Facilitators and barriers associated with the use of PC
Facilitators
Facilitators to support the use of PC services in the review population were reported in 9 studies and can be categorized into 10 main groups as follows: facilitators at hospital level (n = 7), organizational strategies at a regional/national level (n = 4), facilitators related to patients and their families (n = 4), facilitators related to health-care professionals (n = 3), facilitators related to communication and interaction between patients/families and health-care professionals (n = 3), integration of religious and cultural practices in PC (n = 2), PC education and training and research (n = 2), societal facilitators (n = 1), effective pain management in PC (n = 1), and enhancing patient-centered care/respecting patient preferences (n = 1). See Table 6.
Table 6. Facilitators associated with the use of palliative care (PC), frequency, and source study
Barriers
Thirteen studies reported on barriers to using PC services, and these can be sorted into 10 main categories as follows: barriers related to patients and families and their behavior (n = 10), laws and policies (n = 8), lack of education, knowledge, and exposure (n = 7), structure of the health-care system (n = 6), barriers related to cultural norms and values (n = 7), barriers to communication and interaction between patients, relatives, and health-care professionals (n = 6), lack of necessary resources (n = 4), barriers related to behavior of health-care professionals (n = 6), social pressure (n = 2), and religious beliefs (n = 2). See Table 7.
Table 7. Barriers associated with the use of palliative care (PC), source study, and frequency
Interventions studied in relation to the use of PC at EOL
This was reported in one pre- and post-intervention study (Askarian et al. Reference Askarian, Ebrahimi, Tabei, Askarian, Ebrahimi and Tabei2020), the intervention studied was training nurses on PC with an Islamic approach to reducing pain in cancer patients. The intervention was significantly associated with a reduction of the inadequate situation of patients, an improvement in values of quality of life, an improvement in mental health, an improvement in environmental health, and an improvement in physical health. However, an associated improvement in social health was shown to be insignificant.
Discussion
We collected and analyzed the published literature on the use of PC services and attitudes and decisions at the EOL in Muslim populations. We identified 5 topics studied, the first one deals with preferences and decisions at the EOL, which were mostly negative (refusal) toward euthanasia and assisted suicide and withholding of one or more LSTs or medications, while there was relatively more acceptance of withdrawal of one or more LSTs or medications, therapy at EOL and palliative sedation, which may be explained that studies reporting on this topic involved physicians. The second focuses on the reasons for accepting or rejecting some of these decisions. Interestingly, our review found that while some participants in the included studies indicated a willingness to make decisions in favor of euthanasia, assisted suicide, and other decisions at the EOL because of religion and religious beliefs, this was the most common reason for refusing these types of decisions. The same was true for reasoning with principles of good death and dying. While these were reasons for accepting or agreeing with some of these decisions for some participants, they were also the reasons for refusing these decisions. Several factors could explain these inconsistent results: (a) individual differences between participants in understanding and reflecting on these issues; (b) participants’ ignorance of the meaning and definition of some of these decisions and of the existence of some religious judgments that regulate these types of EOL decisions in different scenarios; and (c) the presence of participants from groups with different professional and cultural backgrounds. The third is concerned with decision-making and decision-makers, there was a lack of clarity in a number of studies about the role of the patient in the decision-making process, in addition to a lack of studies focusing on patterns and models of decision-making. Furthermore, some studies did not have quantitative data on the decision-maker, so we were unable to make conclusive findings about this. The fourth topic shows that, despite the growing need for PC, the results of our scoping review show that there is still a vacuum in the provision of PC for Muslim patients. This may be explained by the existence of the various barriers identified in our review. The fifth topic deals with the facilitators and barriers associated with the use of PC by the Muslim population, some of which could be avoided in order to increase the use of PC by this population. The barriers reported in Muslim-majority countries tended to be in the topics of legislation, policy, lack of education, knowledge and exposure, and lack of necessary resources (Al-Awamer and Downar Reference Al-Awamer and Downar2014; Almansour et al. Reference Almansour, Seymour, Aubeeluck, Almansour, Seymour and Aubeeluck2019; Almuzaini et al. Reference Almuzaini, Salek, Nicholls and Alomar1998; Alwadaei et al. Reference Alwadaei, Almoosawi, Humaidan, Dovey, Alwadaei, Almoosawi, Humaidan and Dovey2019; Borhani et al. Reference Borhani, Hosseini and Abbaszadeh2014; Colak et al. Reference Colak, Oguz, Yazilitas, Imamoglu, Altinbas, Colak, Oguz, Yazilitas, Imamoglu and Altinbas2014; El Jawiche et al. Reference El Jawiche, Hallit, Tarabey, Abou-Mrad, El Jawiche, Hallit, Tarabey and Abou-Mrad2020; Fearon et al. Reference Fearon, Kane, Aliou and Sall2019; Weng et al. Reference Weng, Nakdali, Almoosawi, Al Saeed, Maiser, Al Banna, Weng, Nakdali, Almoosawi, Al Saeed, Maiser and Al Banna2021). In non-Muslim-majority countries, they tended to be in the topic of barriers to communication and interaction between patients, relatives, and health-care professionals (Jansky et al. Reference Jansky, Owusu-Boakye and Nauck2017; Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Francke, Pasman and Onwuteaka-Philipsen2017). Our review did not identify any articles that examined the effect of the likely facilitators of PC use in the review population, but we also identified the facilitators of potentially increased PC use.
Strengths and limitations
Our scoping review provides a comprehensive summary and synthesis of the findings of different studies in order to draw conclusions about the existing literature and to identify research gaps for further investigation. It includes a wide range of literature sources and types to provide a detailed understanding of the research area, and it presents the findings of the review in a clear and concise manner to improve readability and interpretability. To the best of our knowledge, this scoping review is the first looked at barriers and facilitators to PC use and preferences among Muslims in both Muslim-majority and non-Muslim-majority countries. This not only addresses an existing gap in knowledge but also highlights the importance of this review. The literature search was conducted in 4 databases (due to time and resource constraints) and was limited to certain languages or publication types; these limitations may result in missing relevant studies, especially those published in other languages or available as gray literature, which may lead to selection and publication bias. In addition, the validity of the included studies was not assessed, as is common in scoping review methodology (Aromataris and Munn Reference Aromataris and Munn2020).
Conclusions and recommendations
Our scoping review shows the paucity of currently available literature describing interventions to facilitate the use of PC and the rarity of guidelines for specific PC for this population. The majority of available studies focused on attitudes and preferences toward euthanasia, assisted suicide, and withholding or withdrawal of LSTs. The most common reasons for refusing forms of euthanasia and assisted suicide and other EOL decisions aimed at reducing patient suffering and allowing a dignified death were related to religion and religious arguments, although Islamic ethics allow some of these decisions, such as withholding or withdrawing LSTs, under certain medical conditions. In the context of PC, a focus on raising awareness of this issue among patients and health-care providers may help to improve decision-making aimed at increasing the use of PC among Muslim patients. Despite the absence of some barriers and the availability of some facilitators associated with the use of PC in non-Muslim-majority countries, there is a lack of evidence examining the participation of and benefits received by this population in this region of the world. There is a clear need for further research in this area, which should consider the facilitators associated with the use of PC and their effectiveness and practicability. We cannot draw implications for practice because the scoping review methodology does not include an assessment of the quality of the included literature (Aromataris and Munn Reference Aromataris and Munn2020).
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951525000148.
Funding
This research is not in receipt of specific grant funding from any funding agency, commercial or not-for-profit sector.
Competing interests
The authors declare no competing interests.
Open access
