Elsevier

Social Science & Medicine

Volume 68, Issue 2, January 2009, Pages 323-333
Social Science & Medicine

Involvement of Rabbinic and communal authorities in decision-making by haredi Jews in the UK with breast cancer: An interpretative phenomenological analysis

https://doi.org/10.1016/j.socscimed.2008.10.003Get rights and content

Abstract

This paper examines how Rabbinic and communal authorities participated in treatment decisions made by a group of strictly orthodox haredi Jews with breast cancer living in London. Semi-structured interviews were conducted with five haredi breast cancer patients. The transcripts were analysed using interpretative phenomenological analysis. Demographic and personal data were collected using structured questionnaires. All participants sought Rabbinic involvement, with four seeking rulings concerning religious rituals and treatment options. Participants' motivations were to ensure their actions accorded with Jewish law and hence God's will. By delegating treatment decisions, decision-making became easier and participants could avoid guilt and blame. They could actively participate in the process by choosing which Rabbi to approach, by providing personal information and by stating their preferences. Attitudes towards Rabbinic involvement were occasionally conflicted. This was related to the understanding that Rabbinic rulings were binding, and occasional doubts that their situation would be correctly interpreted. Three participants consulted the community's ‘culture broker’ for medical referrals and non-binding advice concerning treatment. Those who consulted the culture broker had to transcend social norms restricting unnecessary contact between men and women. Hence, some participants described talking to him as uncomfortable. Other concerns related to confidentiality.

By consulting Rabbinic authorities, haredi cancer patients participated in a socially sanctioned method of decision-making continuous with their religious values. Imposing meaning on their illness in this way may be associated with positive psychological adjustment. Rabbinic and communal figures may endorse therapeutic recommendations and make religious and cultural issues comprehensible to clinicians, and as such healthcare practitioners may benefit from this involvement.

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.

References (71)

  • M. Shaked

    The social trajectory of illness: autism in the ultraorthodox community in Israel

    Social Science & Medicine

    (2005)
  • I.C. Thuné-Boyle et al.

    Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the literature

    Social Science & Medicine

    (2006)
  • P.A. Ubel et al.

    The role of decision analysis in informed consent: choosing between intuition and systematicity

    Social Science & Medicine

    (1997)
  • S. Alferi et al.

    Religiosity, religious coping, and distress

    Journal of Health Psychology

    (1999)
  • K. Beaver et al.

    Treatment decision making in women newly diagnosed with breast cancer

    Cancer Nursing

    (1996)
  • Y. Bilu et al.

    What does the soul say? Metaphysical uses of facilitated communication in the Jewish ultraorthodox community

    Ethos

    (1997)
  • J.D. Bleich

    Bioethical dilemmas – A Jewish perspective

    (1998)
  • P. Byrne et al.

    Hospice care: Jewish reservations considered in a comparative ethical study

    Palliative Medicine

    (1991)
  • M. Carlowe et al.

    Long term planning for British Jewry: Final report and recommendations. JPR planning for Jewish communities: Report No. 5(2003)

    (2003)
  • M. Cinnirella et al.

    Religious and ethnic group minorities on beliefs about mental illness: a qualitative interview study

    British Journal of Medical Psychology

    (1999)
  • A.M. Clarfield et al.

    Ethical issues in end-of-life geriatric care: the approach of three monotheistic religions – Judaism, Catholicism, and Islam

    Journal of the American Geriatrics Society

    (2003)
  • K. Coleman

    Researching hard-to-access, culturally insular populations: methodological and ethical challenges

    Journal of Health, Social and Environmental Issues

    (2007)
  • Coleman, K. Personal and communal reactions to cancer: an interpretative phenomenological analysis of the beliefs held...
  • K. Coleman et al.

    Why is this happening to me? Illness beliefs held by haredi Jewish breast cancer patients: an exploratory study

    Spirituality and Health International

    (2007)
  • I. Dancyger et al.

    Cultural factors in orthodox Jewish adolescents treated in a day program for eating disorders

    International Journal of Adolescent Medical Health

    (2002)
  • S. Dein et al.

    Does being religious help or hinder with chronic illness? A critical literature review

    Palliative Medicine

    (1997)
  • S. Dellapergolla

    Jerusalem's population, 1995–2020: demography, multiculturalism and urban policies

    European Journal of Population

    (2001)
  • Department of Health

    Patient and public involvement in health

    (2004)
  • P.R. Ebright et al.

    Understanding hope and factors that enhance hope in women with breast cancer

    Oncology Nursing Forum

    (2002)
  • K.J. Flannelly et al.

    A three-year study of chaplains' professional activities at Memorial Sloan-kettering Cancer Center in New York City

    Psycho-Oncology

    (2007)
  • D. Goddard et al.

    Ethnicity and health: attitudes of Italian Americans and Hasidic Jews towards osteoporosis

    Humboldt Journal of Social Relations

    (2004)
  • Y. Goodman

    Dynamics of inclusion and exclusion: comparing mental illness narratives of haredi male patients and their rabbis

    Culture, Medicine and Psychiatry

    (2001)
  • D. Greenberg et al.

    Obsessive compulsive disorder in ultra-orthodox Jewish patients: a comparison of religious and non-religious symptoms

    Psychology and Psychotherapy: Theory, Research and Practice

    (2002)
  • D. Greenberg et al.

    Sanity and sanctity: Mental health work among the ultra-orthodox in Jerusalem

    (2001)
  • I. Grewal et al.

    Ethnic and language matching of the researcher and the research group during design, fieldwork and analysis

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