Title: Religion and Ethics at the End of Life. A Qualitative Empirical Study among Elderly Jewish and Muslim Women in Antwerp (Belgium)
Other Titles: Religie en ethiek aan het levenseinde: een kwalitatief empirisch onderzoek bij oudere joodse vrouwen en moslima's in Antwerpen
Authors: Baeke, Goedele; M0220042
Issue Date: 13-Nov-2012
Abstract: In contemporary hospital settings in Belgium answering spiritual and ritual needs of patients, for instance by providing them spiritual support and facilities for prayer, has become an integral dimension of care. In recent pleads for the provision of religion- and culture-sensitive care, there is an increasing awareness that the way people deal with illness and health care is in an important way influenced by religion or world view. This dissertation aims to elaborate on the idea that the importance of religion and world view in health care extends beyond merely spiritual care. The ways in which the ethical dimensions related to health care decisions are handled differ widely. It is quite plausible that religious people might not deal with ethical dilemmas in medicine in the same way as, for instance, non-religious humanists do. Although the link between religion and ethics has often been taken for granted, the question of what precisely constitutes differences in handling ethical dilemmas remains interesting. Differences might relate to people’s world view: ideas about ultimate reality, humankind and life might influence opinions on what ought to be, including what to decide in the face of an ethical dilemma.In Belgium, in the build-up to the euthanasia law, and ever since its enactment in 2002, debates revolved around people’s right to die, particularly among scholars, ethicists and policy makers having either a Christian, either a non-religious humanist background. Until today, in societal, political and academic conversations on the topic, voices of Jews and Muslims - the two largest religious minority groups in Belgium - are absent, while, at the same time, given the multicoloured character of present-day society, there is an urgent need for culture- and religion-sensitive care. This doctoral dissertation aimed to meet this lacuna by studying (Flemish) Jewish and Muslim perspectives on ethical dilemmas in end-of-life care. Therefore, an exploratory qualitative empirical study was set up in the (Orthodox) Jewish and Muslim communities in Antwerp (Belgium). This non-normative descriptive qualitative empirical study focused on two central research questions: (1) what are the attitudes of elderly Jewish and Muslim women (age ≥ 55) living in Antwerp (Belgium) toward ethical dilemmas which may occur in contemporary end-of-life health care?; (2) to what extent does the participants’ ethos correspond with or deviate from Jewish and Muslim standpoints found in normative literature? Additionally, the study explored (3) whether there is a link between specific religious beliefs and the way ethical questions at the end of life are dealt with, and what precisely constitutes this link. Moreover, (4) regarding this link, we aimed to draw very tentative comparative conclusions with regard to two related (Abrahamic) religions (Judaism and Islam), living close to each other in the city of Antwerp (Belgium), at the same time being aware of huge differences (for instance with respect to socio-economic and education level) between both. A Grounded Theory methodology, which makes use of an inductive method, was applied to analyse the interview data. Keeping the exploratory nature of the empirical study in mind, we did not develop substantial theories, for instance with regard to the religion-ethics link in general. Our primary purpose was to enter into and reconstruct our participants way of thinking with regard to religion, illness, medicine and specific treatment decisions at the end of life, via a codification of the interview data.In the first part of the doctoral dissertation we elaborate on Jewish perspectives on the topic under study, as Jews are an important and long-standing population in Belgium. The first chapters of this part were meant to gain insight into normative Jewish perspectives on death and specific ethical dilemmas in health care. In the first chapter after the introduction to the first part, we analyze Jewish perceptions of life and death and Jewish end-of-life rituals. In this chapter, we argue that Judaism strongly rejects the rule of death, despite the fact that the Jewish tradition takes human contingency seriously. We discover that in Judaism, even when death comes knocking, stress on life prevails. The chapter focuses on three central elements which drop a hint in that direction: (1) discontinuity (life and death appear as two strictly separated spheres), (2) continuity (stress on the existence of life after death), and (3) community (which plays an essential life-giving role).In the subsequent chapters, the focus is narrowed down to very concrete ethical dilemmas and Jewish views on it. First, we discuss the (American) Jewish debate on the acceptability of using organs retrieved from brain-dead patients. In religious Jewish circles, it is disputed whether extraction of these organs should be considered murderous. This review of North American religious Jewish perspectives on the issue of retrieval of organs from a heart-beating brain-dead donor reveals that two approaches are dominant. While liberal (Conservative as well as Reform) American rabbis appear to agree with the acceptability of organ transplantation, no unanimity is found among prominent Orthodox American rabbis. By examining this much-debated ethical query, the chapter aims to reveal the specificity of Jewish ethical reasoning, its text-centeredness and heterogeneous character. Second, Jewish perspectives on euthanasia are explored, on the basis of a review of publications of prominent rabbis who have extensively published on Jewish biomedical ethics. In the chapter, we look into Orthodox, Conservative and Reform opinions on euthanasia, and we discover an inner-Jewish as well as intra-branch diversity. In our review, we find no advocates of euthanasia in the Orthodox movement. In the Conservative as well as Reform movement, we record a diversity of opinion. Without neglecting this inner-Jewish heterogeneity, we stress, however, that pro-euthanasia opinions are exceptional voices, even within the Conservative and Reform branches of Judaism. Again, apart from Judaism’s essential diversity, the debate on euthanasia discloses that ethical reasoning in Judaism predominantly presupposes reference to the Jewish textual tradition. Third, we probe the position of prominent Orthodox Jewish authorities with regard to withholding and withdrawing life-sustaining treatment, and we confront them briefly with Conservative and Reform perspectives on the topic. This chapter centres around the Jewish emphasis on the preservation of life, and shows that Jewish views on the permissibility of withholding/withdrawing life-sustaining treatment are again rather diversified. Divergent opinions are found in all Jewish movements. The chapters which reviewed normative Jewish perspectives on organ donation, euthanasia and withholding/withdrawing life-sustaining treatment functioned as a first necessary acquaintance with the specificities of Jewish ethical reasoning. The chapters show that Jewish medical ethics is casuistic and gives evidence of a ‘heterogeneous specificity’: rabbis, who deal with present-day ethical queries in end-of-life care, draw on a common arsenal of values, principles and texts, which are not shared by all at all times, and interpreted or used in a similar way.The three subsequent chapters focussed on an examination of the actual ethos of a particular group of Jews living in Antwerp (Belgium). From June 2008 until January 2009, 23 face-to-face interviews were conducted with a purposive sample of elderly (age ≥ 60) Hasidic, non-Hasidic Orthodox and secularized Orthodox Jewish women in Antwerp. Given the female sex of the researcher and the strict separation between men and women in traditional Judaism, only women were included in the study. In the dissertation, we subsequently outline the perceptions of our research participants with regard to a) illness and medicine, b) active termination of life, and c) withholding and withdrawing life-sustaining treatment. In these chapters, we developed some tentative concepts with regard to the link between Jewish beliefs and ethical attitudes. Among Orthodox Jewish participants it was predominantly found that every action which was perceived as active termination of life was rejected, because of their emphasis on the sanctity of human life. Secularized Orthodox Jews were more likely to stress quality of human life and human autonomy, and to accept active termination of life. Further, our empirical study showed that the interplay between religion and ethics found in our sample is very complex. We found religious women who approved of euthanasia, despite their faith in God. We discovered that not so much being Jewish, but what interviewees believed and their image of God, had an important impact on their moral attitudes. In our empirical findings we, first, discovered that interviewees who did not have faith in God or an ultimate reality, were more likely to underline a person’s absolute right of self-determination with regard to life and death. Life, death, illness and health were not associated with God or a transcendental reality, but were interpreted on a purely profane level and seen as mere coincidence. These interviewees were very tolerant toward active termination of life and withholding and withdrawing of life-sustaining treatment. Second, participants who had faith in an almighty, omniscient God, were more likely to put human beings’ fate in God’s hands. They believed that God created the world, and that He governs human beings’ life and death. Interpreting life, health, illness and death on a transcendental level, they were more likely to oppose human intervention in the realm of life and death. As such, they took a very negative stance toward every act which they perceived to be active termination of life: euthanasia, assisted suicide, and often also withholding and withdrawal of treatment. Third, irrespective of being (non-)Hasidic Orthodox or secularized Orthodox, interviewees who had faith in God, but who refused to believe in God’s almighty power with regard to life, death, illness and health, were more likely to stress human beings’ right to decide about the end of their life. God would not want human beings to suffer, they argued, thus leaves room for ending their lives in a situation of unbearable suffering. In comparison to the centuries-old presence of Judaism in Belgium, the emergence of Islam in the country is rather recent. Yet, ever since Muslim migration to Belgium started in the late 1950s-early 1960s, the Muslim population continues growing. Considering this, and given the fact that first generation migrants of Moroccan and Turkish origin grow old today, and hence might have increasing medical needs, we considered it important to investigate Islamic views on ethical dilemmas in end-of-life health care. More specifically, the second part of this dissertation constitutes of a presentation and discussion of the data obtained from our exploratory qualitative empirical study conducted in the Turkish and Moroccan Muslim communities in Antwerp (Belgium). Given the research expertise of the Interdisciplinary Centre for the Study of Religion and World View (KU Leuven) - normative Islamic views on ethical dilemmas in end-of-life care were already extensively investigated in the past - we did not assume it useful to give in our text an overview of Islamic end-of-life ethics in general. Therefore, the second part focuses on reconstructing the way of thinking of a particular group of Muslims living in Antwerp (Belgium) with regard to religion, medicine, illness, and specific treatment decisions at the end of life. From June 2009 until January 2011 face-to-face interviews were done with 30 elderly (age ≥ 55) first generation Muslim women of Moroccan (15) and Turkish (15) origin, with the assistance of two experienced interpreters, fluently speaking Turkish, Moroccan and Berber. Given the segregation of the sexes in Islam, as a female researcher we only recruited Muslim women to participate in the study. In three subsequent chapters in the second part of the dissertation, we discuss the views of the interviewees ona) medicine, illness and suffering, b) active termination of life, and c) non-treatment decisions. In the discussion section of the chapters, the views are confronted with normative Islamic standpoints.To sum up, the religious views and ethical attitudes found among our interviewees were almost homogeneous. This is related to the homogeneity of their religious convictions. The overwhelming majority of our interviewees perceived God as almighty and all-knowing. They believed that God judges human beings’ way of living, and that it has repercussions in the afterlife. Stressing their faith in God’s sovereignty in the domain of life and death, these participants radically opposed every medical act which would contribute to a patient’s death: voluntary euthanasia, assisted suicide, non-voluntary euthanasia, and mostly also withdrawal and withholding of treatment. Slight differences were found between Turks and Moroccans. At the same time, we observed nevertheless that there might be openness for euthanasia among some Muslims. One Turkish and one Moroccan interviewee, who were both deeply religious, did not reject active termination of life. They toned down God’s sovereignty with regard to death, and left room for human decision-making at the end of life. They reported that God is a protector of human beings, and that God does not decide about illness and suffering. As such, our study suggests that being a religious Muslim not automatically implies disapproval of active termination of life. We also noticed that personal confrontation with illness might have a significant influence. Anyway, we discovered that specific religious beliefs, centring around God’s characteristics, might exert an important influence with regard to views on specific ethical dilemmas in end-of-life care. The overwhelming majority of our Muslim interviewees expressed a strong disapproval of every act which was perceived as active termination of life. We concluded that this attitude was related to their image of God: omnipotent, omniscient and judging.The epilogue of the dissertation aims to offer some preliminary comparative perspectives on the way of thinking of our Jewish and Muslim participants with regard to treatment decisions at the end of life. It offers very tentative insights into the way Jewish and Islamic beliefs and practices may influence the manner very specific moral dilemmas in end-of-life health care are dealt with. Drawing very tentative conclusions, we take into account that - when comparing Jewish and Muslim views - certain variables, such as socio-economic and educational level, were substantially different. Specifically, this epilogue takes the multidimensional nature of religion into account, and explores which facets of religion were most influential in the religion-ethics interplay we discovered in our empirical studies. As such, in this epilogue, the influence of our participants’ religiosity on the way they handle ethical dilemmas is addressed in its complexity. In sum, our study results indicate that different dimensions of religiosity have a stronger or weaker influence. Most obvious is the impact of the ideological dimension of religiosity (a person’s image of and beliefs about God or ultimate reality). Irrespective of religious affiliation, interviewees who believed that God is omnipotent, that God puts human beings to the test throughout life, and that God will evaluate a person’s earthly deeds after life, were more likely to have a negative attitude to every act which they perceived as active termination of life. As such, not only (non-)voluntary euthanasia and assisted suicide were rejected, withdrawal (and often also withholding) of treatment, which was considered as contributing to a patient’s death, was negatively perceived as well. Additionally, the epilogue shows that other factors, such as personal confrontation with illness, might have an impact on approaching ethical dilemmas in end-of-life care, and that it might yield viewpoints which are more or less different from what is perceived to be the normative Orthodox Jewish or Islamic view.
Publication status: published
KU Leuven publication type: TH
Appears in Collections:Research Unit Theological Ethics
Interdisciplinary Centre for Religious Studies

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