Advance care planning (ACP) is a cornerstone of self-determination for the type of care provided at the end of life. Despite many national efforts to improve American adults' engagement in ACP, statistics indicate low engagement. Low engagement, especially among racial and ethnic minority populations, immigrants, people with lower socioeconomic status, young adults, rural residents, or non-English speakers, is common. Advance care planning engagement among Muslims living in the United States has been minimally studied. The purpose of this study was to explore Muslims' engagement in ACP. A cross-sectional descriptive design was used. Participants were recruited from Islamic organizations through convenience and snowball sampling. Engagement in ACP was measured by the Advance Care Planning Engagement Survey. A sample of 148 Muslims (18-79 years of age) participated in the study. The average engagement scores ranged from 1.97 to 2.09, with about two-thirds in the precontemplation stage. Significant differences in engagement scores were found according to health condition and end of life experiences. Results suggest a need for further collaborative efforts by health care providers, policymakers, and researchers to mitigate the disparities in ACP engagement in the American Muslim community.
Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context.
OBJECTIVE: The objective of this scoping review is to explore the empirical evidence on the range of treatment decisions made by adult Muslims at the end of life.
INTRODUCTION: Relief of pain and suffering is a human right; however, ethnic, racial, and religious minorities do not receive optimum end-of-life care. Several factors have been identified as impacting on the decision-making of minority populations. These patients have been found to access palliative care to a lesser degree, receive inadequate pain management, prefer aggressive care, and die in a place other than their place of preference. Muslims remain an under-represented community in end-of-life studies, with little known about their care preferences and decisions in their final stage of life.
INCLUSION CRITERIA: This review will include studies whose participants are adults (= 18 years) facing end-of-life decision-making who identify as Muslim while residing in a non-Muslim-majority country. The participants may be healthy volunteers with a view on the subject, or patients and their caregivers facing end-of-life decision-making. Quantitative and qualitative studies will be included, with the exclusion of theoretical and opinion-based articles.
METHODS: The three-step search strategy for the proposed scoping review will follow JBI methodology. Databases to be searched include MEDLINE via OvidSP, PsycINFO via OvidSP, Embase via OvidSP, Scopus (Elsevier), CINAHL via EBSCO, and ProQuest Dissertations and Theses Global. Studies in English published since database inception will be considered. The results will be extracted and charted by two independent reviewers. Data will be presented in tabular form and a narrative summary provided.
BACKGROUND: Care for people with progressive illness should be person-centred and account for their cultural values and spiritual beliefs. There are an estimated 1.7 billion Muslims worldwide, largely living in low-and middle-income countries.
AIMS: This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients/families for end-of-life care in Muslim-majority countries
DESIGN: Systematic review DATA SOURCES: PsychoINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials Trial, Pubmed, ASSIA, Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and grey literature, included. Qualitative studies analysed using thematic analysis and quantitative component provided triangulation.
RESULTS: The initial search yielded n=5,098 papers, of which n=30 met the inclusion criteria. A total of 5,342 participants (4,345 patients, 81.3%) were included; 97.6% had advanced cancer. The majority (n = 22) of studies were quantitative. Three themes and sub-themes 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, closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families.
CONCLUSION: 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.
Physician-assisted suicide (PAS) and euthanasia can be debated from ethical and legal perspectives, and there are a variety of views regarding their acceptability and usefulness. Religion is considered an important factor in determining attitudes towards such practices. This narrative review aims to provide an overview of the Islamic perspective on PAS and euthanasia and explore the Islamic approach in addressing the related issues. The PubMed database was searched to retrieve relevant articles, then the references listed in the selected articles were checked for additional relevant publications. Additionally, religious books (Quran and hadith) and legal codes of selected countries were also consulted from appropriate websites. The Islamic code of law discusses many issues regarding life and death, as it considers any act of taking one's life to be forbidden. Islam sanctifies life and depicts it as a gift from God (Allah). It consistently emphasises the importance of preserving life and well-being. Therefore Muslims, the followers of Islam, have no right to end their life. All Islamic doctrines consider PAS and euthanasia to be forbidden. However, if the patient has an imminently fatal illness, withholding or withdrawing a futile medical treatment is considered permissible. From a legal perspective, Islamic countries have not legalised PAS and euthanasia. Such practices are therefore considered suicides when patients consent to the procedure, and homicides when physicians execute the procedure.
Purpose: To explore the experiences of expatriate nurses caring for Muslim patients near end-of-life in a palliative care unit in the United Arab Emirates.
Methods: A qualitative descriptive study, with data collected through semi structured individual interviews with nine expatriate nurses working in a palliative care unit in one hospital in the United Arab Emirates. Thematic analysis of the data transcripts used a structured inductive approach.
Results: Analysis of the interview transcripts yielded three themes. First, language was a significant barrier in end-of-life care but was transcended when nurses practiced authentically, using presence, empathetic touch and spiritual care. Secondly, relationships between nurses, patients and families were strengthened over time, which was not always possible due to late presentation in the palliative care unit. Finally, nurses were continually in discussions with physicians, families and other nurses, co-creating the meaning of new information and experiences within the hospital policy context.
Conclusion: For expatriate nurses, palliative nursing in a Muslim middle eastern country is complex, requiring nurses to be creative in their communication to co-create meaning in an emotionally intensive environment. Like other palliative care settings, time can strengthen relationships with patients and their families, but local cultural norms often meant that patients came to palliative care late in their disease trajectory. Preparing expatriate nurses for work in specialist palliative care settings requires skill development in advanced communication and spiritual practices, as well as principles of palliative care and tenets of Muslim culture.
Background: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC).
Methods: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher’s exact tests, likelihood ratios and the Kruskal–Wallis test were used to assess differences between the two cohorts.
Results: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p = 0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p = 1).
Conclusions: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.
When it is ethically justifiable to stop medical treatment? For many Muslim patients, families, and clinicians this ethical question remains a challenging one as Islamic ethico-legal guidance on such matters remains scattered and difficult to interpret.
In light of this gap, we conducted a systematic literature review to aggregate rulings from Islamic jurists and juridical councils on whether, and when, it is permitted to withdraw and/or withhold life-sustaining care. A total of 16 fatwas were found, 8 of which were single-author rulings, and 8 represented the collective view of a juridical council. The fatwas are similar in that nearly all judge that Islamic law, provided certain conditions are met, permits abstaining from life-sustaining treatment. Notably, the justifying conditions appear to rely on physician assessment of the clinical prognosis. The fatwas differ when it comes to what conditions justify withdrawing or withholding life- sustaining care. Our analyses suggest that while notions of futility greatly impact the bioethical discourse regarding with holding and/or withdrawal of treatment, the conceptualization of futility lacks nuance. Therefore, clinicians, Islamic jurists, and bioethicists need to come together in order to unify a conception of medical futility and relate it to the ethics of withholding and/or withdrawal of treatment.
The descriptive study was conducted to investigate the knowledge, opinions, behaviors of senior nursing students regarding euthanasia and factors in Islam influencing these. Almost all students (97.7%) knew about euthanasia. Their knowledge, opinions and behaviors were affected by their beliefs about death, religious beliefs and the idea of being subject to euthanasia themselves. Religion influenced whether they wanted euthanasia to be legalized or would carry it out secretly. Students who would be willing for their relatives to undergo euthanasia would not want to participate in this. Knowledge about the concept of euthanasia should be increased and the subject further investigated in many dimensions.
BACKGROUND: The provision of appropriate end of life care for patients who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare, can be difficult and stressful for the nurse. To date, research has focused predominately on nurses' experiences of end of life care for the Muslim patient who is an immigrant in another country.
OBJECTIVES: To critically review the literature related to the lived experiences of non-Muslim expatriate nurses providing end of life care for Muslim patients in their home country.
DESIGN: Integrative Literature Review DATA SOURCES: Comprehensive online search of Library Databases: Ovid, CINAHL, EBSCOHost; MEDLINE; Science Citation Index Expanded; PubMED; Web of Science; PROQUEST, and Scopus.
REVIEW METHODS: An integrative review of literature published within the dates January 2000 - July 2017. Included articles were published in the English language, peer reviewed/refereed, and focused on nurses' experiences. Both qualitative and mixed method studies describing the experience of non-Muslim nurses providing nursing care to Muslim patients in a country that was predominately Muslim were included.
RESULTS: Initially 74 articles were found of which nine met the inclusion criteria. Research has been conducted predominantly within the Kingdom of Saudi Arabia, with one article from Bahrain and one other jointly from Kingdom of Saudi Arabia and the United Arab Emirates. The research indicates that expatriate nurses view themselves as powerless patient advocates, are hindered by the nurse-patient-family-physician quadriad structure, language and differing beliefs about communicating death, and negotiating culturally safe care is emotionally challenging.
CONCLUSION: This review highlights that the stressors associated with misalignment of expectations cause emotional and physical distress for the nurses. When nurses were focused on clinical care, they were unable to accommodate cultural practices that were important to the patient and family, contributing to increasing stress. Researchers have sought to capture this distress and make some sense of its impact. How nurses can provide culturally safe care, in countries with cultural practices quite different from their own, bears further investigation.
BACKGROUND: An intensive care unit (ICU) features high mortality rates. Witnessing subsequent deaths may affect nurses psychologically and spiritually. Islam has an influence on Muslims' life and death. Nevertheless, little is known about Muslim intensive care nurses' experiences of grief in dealing with the deaths of patients.
AIM AND OBJECTIVES: This study aimed to describe the grief reactions and coping strategies of Muslim nurses in dealing with the death of patients.
DESIGN: This is a qualitative study with a phenomenological approach.
METHODS: Semi-structured individual interviews were conducted. Fourteen participants from an ICU in an Indonesian tertiary public hospital participated in this study. Data were analysed by thematic analysis. Trustworthiness was established by Lincoln and Guba's criteria.
RESULTS: The findings identified four reactions of grief, four factors influencing reactions of grief, and three coping strategies used in dealing with death in an ICU. The reactions of nurse's grief were crying, being sad, feeling disappointed, and feeling guilty. These reactions were related to several factors including the circumstances of the patient's death, nurse's expectation of patient's recovery, relationships with the patient, and the reactions of family. Coping management strategies used by nurses in dealing with their grief comprised: sharing with colleagues, avoiding dying and death situations, and engaging in spirituality.
CONCLUSIONS: The Muslim ICU nurse participants experienced their grieving through a variety of psychological reactions influenced by several factors. Personal coping strategies were revealed in dealing with their grief. However, avoiding dying and death situations affected their duty.
RELEVANCE TO CLINICAL PRACTICE: Attention to nurses' grief should be paid to maintain their psychological well-being and quality of end-of-life care. Providing formal support to enhance grief management is recommended.
This study aims to elicit the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward dying, death, and the afterlife; to identify whether differences are observable between middle-aged and elderly participants and to document how the actual attitudes of our participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the belief in an omnipotent and omniscient God and in an afterlife strongly marks the attitudes of first- and second-generation Muslims in Belgium toward life and death.
This study examined the relationships between religious coping and indices of subjective well-being among 132 Israeli-Muslims who lost a beloved person through death. Participants provided demographic and death-related information, and completed measures of religious coping, satisfaction with life, positive/negative affect. Positive correlations were observed between positive religious coping and both satisfaction with life and positive affect, and between negative religious coping and negative affect. Further, the type of death (expected vs. sudden) was found to be a significant moderator between religious coping and subjective well-being. The theoretical and practical implications of the findings are discussed.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
Context: Nursing care on the spiritual aspect is focusing on the patients' acceptance of their diseases; thus, people living with HIV (PLWH) are able to accept their diseases and are able to take the lesson. PLWH do not only deal with the condition of the disease but also by discriminative social stigma.
Aim: The aim of this study was to explore, describe, and interpret the experience of spirituality to self-acceptance in patients with HIV/AIDS.
Research Methodology: This research is a qualitative approach by descriptive phenomenology of participants involving as many as 10 people, consisting of 5 men and 5 women. All paticipants are muslim with the education level range from junior high school to university. The ages ranged from 29 to 46 years.
Results: This research identified the two themes which are: (1) being able to take the lesson from their diseases, and (2) self acceptance as people living with HIV-AIDS. There were 10 participants participated in this study. A method of in-depth interviews and observation is a help of data collection. Data analysis used was Creswell method.
Conclusion: Results of the study suggested the patients to get motivated and to develop aspects of spirituality so that it can help to ease in the process of self acceptance, asgetting closer to God through pray, read the Quran, fasting, etc.
The aim of this paper was to study the viewpoints of Sunni Islam and Hinduism on euthanasia to explore whether the Sunni tradition's belief in the hereafter and the Hindu culture's faith in reincarnation have any impact on these two religions' positions on the rejection or justification of euthanasia. Examining these two theologies' approaches demonstrated that Sunni Islam considers euthanasia suicide/homicide in light of the belief in the hereafter, whereas Hinduism can justify euthanasia through Gandhi's interpretation of ahimsa, on the condition that all methods to alleviate the patient's pain and suffering have been exhausted.
BACKGROUND: Research demonstrates that the attitudes of religious physicians toward end-of-life care treatment can differ substantially from their nonreligious colleagues. While there are various religious perspectives regarding treatment near the end of life, the attitudes of Muslim physicians in this area are largely unknown.
OBJECTIVE: This article attempts to fill in this gap by presenting American Muslim physician attitudes toward end-of-life care decision-making and by examining associations between physician religiosity and these attitudes.
METHODS: A randomized national sample of 626 Muslim physicians completed a mailed questionnaire assessing religiosity and end-of-life care attitudes. Religiosity, religious practice, and bioethics resource utilization were analyzed as predictors of quality-of-life considerations, attitudes regarding withholding and withdrawing life-sustaining treatment, and end-of-life treatment recommendations at the bivariate and multivariable level.
RESULTS: Two-hundred fifty-five (41% response rate) respondents completed surveys. Most physicians reported that religion was either very or the most important part of their life (89%). Physicians who reported consulting Islamic bioethics literature more often had higher odds of recommending active treatment over hospice care in an end-of-life case vignette. Physicians who were more religious had higher odds of viewing withdrawal of life-sustaining treatment more ethically and psychologically challenging than withholding it and had lower odds of agreeing that one should always comply with a competent patient's request to withdraw life-sustaining treatment.
DISCUSSION: Religiosity appears to impact Muslim physician attitudes toward various aspects of end-of-life health-care decision-making. Greater research is needed to evaluate how this relationship manifests itself in patient care conversations and shared clinical decision-making in the hospital.
There appears to be a great deal of discussion among non-Muslim healthcare professionals, especially nurses and physicians, about medical assistance in dying. However, the discussion of medical assistance in dying among Muslim health caregivers including physicians, social workers, spiritual caregivers, etc. remains insufficient. A thorough analysis of the content of available resources revealed that we need more literature to analyze the attitude of Muslim health caregivers towards medical assistance in dying. This article describes the general attitude towards medical assistance in dying among non-Muslim. This will allow us to observe the challenges and dilemmas faced by Muslim healthcare professionals around medical assistance in dying.
BACKGROUND: Palliative care has been successfully integrated into many Muslim-majority countries, most frequently in urbanised areas with developed health care systems. Less is known as to how the concept of palliative care is perceived by Muslim populations and health workers in rural, resource-limited contexts.
AIM: This study seeks to explore whether the principles of palliative care are congruent with the perspectives of health professionals, families and communities in rural areas of the Islamic Republic of Mauritania, in West Africa.
DESIGN: A qualitative research design was employed underpinned by a constructionist paradigm. Data were collected through 31 interviews and 8 focus groups. Data were analysed using thematic analysis.
SETTING/PARTICIPANTS: A total of 76 participants were recruited from across rural Mauritania; 33 health care professionals, 12 recently bereaved family members and 31 community leaders. Data collection occurred during training events in the capital and visits to villages and rural health posts.
RESULTS: Three major themes were identified. First, there is a perceived lack of congruency between an illness which limits life and the strong belief in destiny. The second theme describes the perceived barriers to communication of issues relating to palliative care. Finally, a good death is described, framed within the interplay of religious faith and cultural practices.
CONCLUSION: The palliative care ethos is viewed positively by the majority of participants. The need to understand and respect a Muslim individual's faith does not diminish our obligation to personalise palliative care provided for them and their family.
One of the major purposes of palliative sedation is to reduce demand for euthanasia. The present paper analyzes a grievous case which demonstrates the killing of a 23-year-old son by his father due to the son's unbearable pain resulting from metastatic colorectal cancer. The article aimed to elaborate the case to figure out whether palliative sedation can be an alternative to euthanasia in a Muslim country. Nevertheless, the analysis of these two end-of-life issues revealed that the limitation of palliative sedation to an expected lifespan of less than 2 weeks as well as the Islamic view on the importance of protecting consciousness preclude reaching a conclusion that palliative sedation can be an alternative to euthanasia in this particular case. Furthermore, in such cases, the primary problem may be the lack of adequate and appropriate palliative care services, rather than the need for euthanasia or palliative sedation.