Involvement of Rabbinic and communal authorities in decision-making by haredi Jews in the UK with breast cancer: An interpretative phenomenological analysis☆
Introduction
Coping is a search for significance in times of stress (Pargament, 1997) consisting of cognitive and behavioural efforts to manage specific demands (Lazarus, 1993). Whilst not all coping during serious illness is religious in nature, religious coping during illness is commonplace; up to 85% of patients use religious resources in their coping (Thuné-Boyle, Stygall, Keshtar, & Newman, 2006). Amongst cancer patients, religion is frequently cited as a source of support (Dein and Stygall, 1997, Koffman et al., 2008, Stefanek et al., 2005).
Despite the proliferation of research into religious coping during illness, there is conceptual confusion concerning ‘religion’ (Stefanek et al., 2005). In this paper ‘religion’ refers to an organised system of beliefs, practices, rituals, and symbols designed to facilitate closeness to the sacred or transcendent that is defined as God, a higher power, or ultimate truth or reality (Koenig, McCulloch, & Larson, 2001). Authors have used diverse methods to examine religious involvement during illness (Hill and Pargament, 2003, Stefanek et al., 2005) resulting in a wide variety of definitions of religious coping that include turning to religion (Stanton, Danoff-Burg, & Huggins, 2002), reliance on religious beliefs (Ebright and Lyon, 2002, Holland et al., 1999), and religious problem-solving (Nairn & Merluzzi, 2003). Religious activities that patients undertake during illness include service attendance (Alferi et al., 1999, Musick et al., 1998), prayer (Moschella et al., 1997, Spilka et al., 1983), viewing or listening to religious television and radio programmes (Musick et al., 1998), and giving religious explanations for their illness (Koffman et al., 2008). However, methodological limitations mean it is frequently difficult to disentangle participants' normal religious behaviour from activities specifically carried out as a result of illness (Thuné-Boyle et al., 2006). Further criticism concerning authors' definitions of religious activities is raised by Thuné-Boyle et al. (2006) who observe, for example, that prayer is an inexact descriptor indicating neither contents nor purpose of prayer: prayers may serve different roles during illness (e.g. praying for strength, praying for forgiveness) potentially with different psychological outcomes for the patient.
Religious coping may confer benefits, providing a source of strength and helping patients to adjust (Stefanek et al., 2005, Thuné-Boyle et al., 2006). Strong religious belief in cancer patients is associated with decreased levels of pain, anxiety and higher levels of satisfaction with life (Dein & Stygall, 1997). However, other research indicates that religious coping may have harmful effects, including increased distress and anxiety, and decreased emotional well-being and adjustment (Stefanek et al., 2005, Thuné-Boyle et al., 2006). Elsewhere authors report no relationship between religious coping and adjustment (Dein and Stygall, 1997, Stefanek et al., 2005. Hill and Pargament (2003) interpret such mixed findings to suggest that religious struggles represent a crossroads leading to positive or negative effects.
Religious figures have a recognised role in healthcare and chaplains frequently are members of multidisciplinary teams in oncology and palliative care (Puchalski et al., 2006, Strang and Strang, 2006). Patients approach chaplains for many reasons including religious support, for example through prayer and religious ritual (Flannelly et al., 2007, Wright, 2001). Patients discussed religious issues including the nature of God and the afterlife, suffering and other existential issues (Strang and Strang, 2002, Wright, 2001). Patients asked chaplains for psychosocial support concerning family and relationships (Kernohan et al., 2007, Strang and Strang, 2002, Wright, 2001), unresolved issues (Kernohan et al., 2007), and preparation for death (Kernohan et al., 2007, Wright, 2001). Finally, patients approached chaplains to discuss diagnosis, prognosis and symptoms, particularly pain (Carey et al., 2006, Strang and Strang, 2002, Wright, 2001). Patients value interactions with clergy, reporting that pastoral visits help maintain hope and optimism (Johnson & Spilka, 1991), provide an opportunity to think, and allow them to express feelings without being judged (Kernohan et al., 2007).
Religious divisions within Judaism can be understood in terms of a spectrum of outlook ranging from the secular to the strictly orthodox. Jewish orthodoxy is measurable according to two criteria: the extent to which adherents view religious laws as God-given and unchangeable, and the degree of adherents' immersion in the values and activities of the secular world.
Haredi (literally, ‘one who trembles’) Jews are strictly orthodox. Central to haredi belief is the Halacha (literally, ‘the way’); the corpus of Jewish law regulating all aspects of behaviour for orthodox Jews. Haredi Jews believe that the Halacha is of Divine origin and its observance obligatory. Matters covered include religious ritual, tort, ethical requirements and, in line with medical advances, medical Halacha is a continually developing specialised area (Bleich, 1998). Rabbinic authorities establish and maintain guidelines for behaviour, issuing general public statements and personal responses answering individual questions. Hence, haredi Jews aim to ensure that their behaviour accords with Halacha, and hence with God's will.
Haredi life is structured around strict religious obligation including observance of the Sabbath, festivals and dietary laws, modesty in behaviour and dress, separation of men and women in public domains, and, for men, ongoing religious study and thrice daily prayer. Many features of the secular world are perceived as detracting from God's sanctity and haredi Jews live in tightly-knit communities functioning in self-imposed cultural insularity.
Most research into religious coping has taken place in North America in predominantly Protestant Christian populations (Hill & Pargament, 2003). It is unclear to what extent such research relates to patients in other countries (Thuné-Boyle et al., 2006) or from other religious groups (Dein & Stygall, 1997). Few studies have examined healthcare behaviours and illness coping mechanisms among haredi Jews. These studies show that haredi Jews use religion in several ways. Several report that haredi patients offer religious explanations for their health problems: Goddard and Helmreich (2004) found that participants held religiously deterministic views of illness whilst Goodman (2001) reports that psychiatric patients offered religious and mystical accounts to comprehend their illness. Coleman, Koffman, and Daniels (2007) found that cancer patients perceived their cancer as coming from God as a personal test and part of a pre-determined and meaningful plan. Patients also reframed distress in religious terms gaining comfort and encouragement. Hence, patients undergoing fertility treatment contextualised their experiences within a framework where Biblical figures have suffered similarly (Kahn, 1998). Mothers of children with autism constructed positive religious interpretations where their children's disabilities signified that the children had a pure soul (Bilu and Goodman, 1997, Shaked, 2005). However, religious interpretations are not always positive. Mark and Roberts (1994) report that the spiritual impact of cancer could be destabilising: patients conceptualised their cancer in terms of punishment, abandonment, anger at God, and being subjected to spiritual testing. Further they observed that certain interpretations may be socially unacceptable, particularly those suggesting a lacking in one's belief in God's benevolence. Religion was also used as a direct source of healing: Shaked and Bilu (2006) found that mothers of autistic children sought healing for their children through prayers and blessings. Kahn (1998) found that patients sought to change their circumstances by participating in tehillim groups: tehillim (Psalms) are recited as an appeal for Divine intervention in times of distress. Patients also used religion to assist them during treatment uncertainty: patients undergoing fertility treatment attributed success to God thereby helping them avoid feelings of guilt should treatment fail (Kahn, 1998).
Rabbinic involvement in haredi patients' coping has not been the direct subject of research. However, several studies conducted in Israel or the USA report Rabbinic involvement as a finding. Rabbis were approached for psychiatric referrals (Goodman & Witztum, 2002) and for medical referrals by cancer patients (Mark & Roberts, 1994), osteoporosis patients (Goddard & Helmreich, 2004), and patients undergoing fertility treatment (Kahn, 1998). Similarly, advice regarding treatment was requested by parents of children with autism (Shaked & Bilu, 2006), patients undergoing fertility treatment (Kahn, 1998), patients with eating disorders (Dancyger et al., 2002), and obsessive compulsive disorder (Greenberg & Shefler, 2002), and those receiving genetic counselling (Mittman, Bowie, & Maman, 2007).
These findings are interesting because they do not correspond to results from studies examining contact between religious figures and patients from the wider population: haredi patients have different reasons for approaching religious figures. Flannelly et al. (2007), in their study of chaplains' activities in an oncology centre in New York, note that Catholic patients are likely to expect a different type of contact from a Catholic priest, specifically ritual activity, than from non-Catholic clergy. This suggests that pastoral intervention may vary according to the religious group to which chaplain and patient are affiliated, with interventions reflecting the practices that are normative to that group. Similarly, Pargament (1997) notes that religious membership may predict different types of religious coping strategies. Haredi Judaism emphasises comprehensive orthopraxis as well as orthodoxy. This may mean that Rabbinic contacts with haredi cancer patients could be anticipated to include activities that patients from other religious groups would not expect of their clergy.
In light of this we conducted an in-depth cross-sectional qualitative study investigating the interface between Rabbinic and communal authorities and haredi breast cancer patients in London. The study aimed to examine whether and to what extent Rabbinic and communal authorities participated in treatment decisions. The research reported here is from a wider study investigating healthcare behaviours and beliefs of haredi breast cancer patients (Coleman, 2007, Coleman, in press, Coleman et al., 2007).
Of the 169,000 Jews living in London an estimated 12% (approximately 20,000) is haredi (Carlowe et al., 2003). This number is rapidly increasing (Holman & Holman, 2002); a trend characteristic of haredi communities worldwide, including Israel and the USA (Dellapergolla, 2001). This reflects a high birth rate (Carlowe et al., 2003) and the fact that comparatively few leave the community (Greenberg & Witztum, 2001). The rapid growth rate contrasts with other sections of the Jewish community outside Israel, where numbers are diminishing. Contributing factors include emigration, low birth rate, and intermarriage (Vallins, 2002). As the number of haredi Jews increases in absolute terms and as a proportion of the Jewish population, their healthcare needs will assume greater significance both for mainstream healthcare providers and for healthcare organisations based within the Jewish community. Greater understanding of how haredi patients approach treatment decisions may facilitate the provision of culturally sensitive care.
Section snippets
Methods
This descriptive cross-sectional in-depth interview study used qualitative methods to investigate an under-researched area (Ritchie, 2003). Five haredi Ashkenazi breast cancer patients fluent in English were recruited between July and September 2005. Although the number of participants is relatively small, it is consistent with the methodological literature concerning qualitative research involving interpretative phenomenological analysis (IPA) (Smith, 1996, Smith et al., 1999). The aim of IPA
Personal and demographic details
Participants were aged between 39 and 58 years, with a mean of 50 years. Date of diagnosis ranged from 1998 to the end of 2004; four were diagnosed during 2004. Three women were diagnosed after discovering a lump and one was diagnosed from a mammogram. Participants lived in the haredi communities of Stamford Hill, North London (n = 3) and North West London (n = 2). All participants were married and each had between five and nine children (mean = 7).
Involvement of Rabbinic authorities
Participants were asked whether they had consulted a
Discussion
This is the first study conducted in the UK examining the involvement of Rabbinic authorities and communal figures in medical decision-making among haredi cancer patients. The study found that when making treatment decisions, participants generally involved Rabbis. In so doing, participants were strongly influenced by a wish to act according to God's will. The process of deciding whether to involve a Rabbi in a particular decision was complex and participants were sometimes conflicted. Reasons
Conclusions
This is the first study exploring the role Rabbis and communal figures play in medical decision-making by haredi cancer patients in the UK. The study adds to the existing literature on religious coping and decision-making, and explores one way that haredi cancer patients use religion to cope during their illness. The results demonstrate that decision-making is most likely not confined to a dyadic interaction between physician and patient: within a larger framework of decision-making Rabbis and
Research ethics committee approval
King's College London Research Ethics Committee, reference 03/04-82, granted ethical approval for the study.
Acknowledgements
Thanks go to the participants who generously gave their time. This paper reports on research conducted during the MSc in Palliative Care, King's College London.
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Thanks go to the participants who generously gave their time. This paper reports on research conducted during the MSc in Palliative Care, King's College London.