ILLUMINATING DISCOURSE THROUGH LIVED EXPERIENCE WITH RHEUMATOID ARTHRITIS by HEATHER FRIESEN A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (Counselling Psychology) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) November 2009 ? Heather Friesen, 2009 ii ABSTRACT Ruth was the diarist of a Medical Log, the main research archive, which documented 40 years of lived experience with rheumatoid arthritis. While informants described Ruth?s coping as exemplary, the latter months of her life were marked by progressive, severe and unremitting pain. At the age of 73, Ruth committed suicide, an act that was generally viewed as rational by informants. Using a critical discourse analytic approach, informed by Parker (1992) and Willig (2001), the present research investigated the cultural discourses (i.e., biomedical, psychological and socio-cultural) that constituted Ruth?s identity, subjectivity and agency over time. In turn, Ruth?s embodied experience was used to illuminate the constituting discourses as to the explicit and implicit gaps, ambiguities and contradictions contained within. Hopelessness, at the end of Ruth?s life, was explored as a dialogically co-constructed reality, deeply embedded within constitutive discourses, rather that simply reflecting a maladaptive cognitive state. The research substantiation of Ruth?s embodied experience as a public archive was viewed as a moral response to suffering, an invitation for empathetic engagement and understanding as well as an endorsement of Ruth?s experience as having truly mattered. iii TABLE OF CONTENTS ABSTRACT .............................................................................................................................. ii TABLE OF CONTENTS ......................................................................................................... iii LIST OF TABLES ................................................................................................................... vi ACKNOWLEDGEMENTS .................................................................................................... vii CHAPTER 1: INTRODUCTION ............................................................................................. 1 Ruth ....................................................................................................................................... 1 Overview of Rheumatoid Arthritis ........................................................................................ 3 Statement of the Problem ...................................................................................................... 5 Rationale for the Study .......................................................................................................... 7 Purpose of the Study ........................................................................................................... 13 Research Question ............................................................................................................... 15 Locating Self as Researcher ................................................................................................ 15 CHAPTER 2: LITERATURE REVIEW ................................................................................ 17 MEDICAL DISCOURSE AND RHEUMATOID ARTHRITIS ........................................ 17 Historical Overview of Medical Discourse ..................................................................... 17 Present Biomedical Discourse ......................................................................................... 19 Limitations of Biomedicine ............................................................................................. 22 Summary of Biomedical Discourse and Rheumatoid Arthritis ....................................... 28 PSYCHOLOGICAL DISCOURSE AND RHEUMATOID ARTHRITIS ......................... 29 Historical Overview of Psychological Discourse ............................................................ 29 Present Biopsychosocial Discourse ................................................................................. 31 Summary of Biopsychosocial Discourse ......................................................................... 43 Subjectivity and Rheumatoid Arthritis ............................................................................ 46 Summary of Subjectivity and Rheumatoid Arthritis ....................................................... 55 SUICIDE DISCOURSE AND RHEUMATOID ARTHRITIS .......................................... 55 Historical Overview of Suicide Discourse ...................................................................... 55 Present Suicide Discourse ............................................................................................... 56 Suicide and Rheumatoid Arthritis ................................................................................... 63 Summary of Suicide and Rheumatoid Arthritis .............................................................. 66 iv CHAPTER 3: METHODOLOGY .......................................................................................... 68 Critical Discourse Analysis ................................................................................................. 68 RESEARCH DESIGN ........................................................................................................ 72 Role of the Researcher ..................................................................................................... 72 Texts for Analysis ............................................................................................................ 73 Role of Informants ........................................................................................................... 76 Collection and Use of Information .................................................................................. 77 RESEARCH PROCEDURES ............................................................................................. 78 Discourse Analysis .......................................................................................................... 78 CRITERION FOR MEASURING THE WORTH OF THE STUDY ................................ 80 Propositional and Naturalistic Generalization as Validity .............................................. 80 Rhizomatic Validity ......................................................................................................... 81 Pragmatic Validity ........................................................................................................... 82 CHAPTER 4: RESEARCH FINDINGS WITH CRITICAL ANALYSIS ............................. 86 A Portrait of Ruth: Through the Lens of Family and Friends ............................................. 86 Reflections on A Portrait of Ruth: Through the Lens of Family and Friends ................... 124 A Portrait of Ruth: Through the Lens of Medical Practitioners ........................................ 147 Reflections on A Portrait of Ruth: Through the Lens of Medical Practitioners ............... 155 The Main Archive: The Medical Log ............................................................................... 159 General Organization ........................................................................................................ 160 Diagnosis and Surgery ...................................................................................................... 166 Complementary Care by Paramedical Professionals ........................................................ 178 Pain .................................................................................................................................... 193 Biomechanical Pain ........................................................................................................... 193 Inflammatory Pain ............................................................................................................. 198 Valued Activities (including social and familial excerpts) ............................................... 222 General Medical Care ........................................................................................................ 234 End of Life Decisions ........................................................................................................ 260 Psychological References .................................................................................................. 262 Last Six Months of Life .................................................................................................... 280 CHAPTER 5: DISCUSSION ................................................................................................ 298 v Summary of Research Findings and Theoretical Implications ......................................... 298 Clinical Implications ......................................................................................................... 319 Limitations of the Present Research .................................................................................. 322 Future Research ................................................................................................................. 324 REFERENCES ..................................................................................................................... 326 APPENDICES ...................................................................................................................... 348 Appendix A: Certificate of Approval ................................................................................ 348 Appendix B: Consent for Research Use of Diary ............................................................. 349 Appendix C: Letter of Introduction by Main Informant ................................................... 350 Appendix D: Invitation to Participate in a Research Study............................................... 351 Appendix E: Consent Form for Research Participation .................................................... 353 Appendix F: Semi-Structured Interview Questions .......................................................... 356 vi LIST OF TABLES Table 1: Steps for Discourse Analysis ????????????????????79 vii ACKNOWLEDGEMENTS Towards the beginning of this research project, I had a dream that I was following two women up a steep path cut into the side of a mountain. A frail woman in orthopaedic shoes was taking the lead, with a stockier woman following in behind. Both women were warm and welcoming, passing back articles of clothing as I was poorly dressed for the journey. As they passed out of sight, I found myself trying on large leather orthopaedic shoes that were too big for my feet. Towards the end of this research project, I had a dream that Ruth was sitting beside me on my living room couch, shifting and rocking towards the edge, as she was getting ready to leave. She leaned towards me, gave me a quick hug, and said, ?I love you.? I stood up to face her, offering my hands on her arms for assistance. I quickly let go, realizing that only Ruth could find her center of balance. Ruth, my hope is that you have been honoured throughout this research project and that your experience has been compassionately witnessed and understood in a way that approximates your truths. Elizabeth, I am so grateful for your generous introduction to Ruth, an event that has enriched my life beyond measure. How I wish that you had lived to celebrate the finished ?story,? although your presence is constant whenever I speak of Ruth. I want to thank you, Marla (Dr. Buchanan) for your steadfast encouragement, your passionate endorsement of this research project and your persistent belief in my adequacy and competence to carry it through to completion. Likewise, I want to thank you, Dr. David Kuhl and Dr. Marvin Westwood for your constant encouragement and support, a committee that embodied hope in both spirit and practice. viii So many wonderful friends and family members have been constant companions throughout this journey, frequently offering writing places of quiet and solitude. A special thanks to you, Ruth and Stanley Martin, Bev and Rick Binder, Mary and Mick Champness, Joella and Gordon Smith, Jennifer and Gary Roosma and Brenda Murphy. Thank you, Michele Secret, for your assistance with this manuscript. I have rested in your knowledge, skill and ethics. Finally, to my children, Helena, Stefan and Justin, you continually remind me of goodness, grace and gratitude. To my husband and beloved friend, Karl, thank you for ?carrying the torch.? You shine so bright. CHAPTER 1: INTRODUCTION This chapter will begin with a brief introduction to Ruth, the author of a Medical Log that documented 40 years of lived experience with rheumatoid arthritis. Throughout the research context, the confidentiality of third parties, whether professional or otherwise, has been maintained through the use of pseudonyms, with steps taken to alter or omit other identifiers, such as location, ethnicity and gender, when appropriate. The introduction will be followed by an overview of rheumatoid arthritis, a statement of the problem and the underlying rationale for the present study. The purpose of the present study will then be provided, along with the research question and chosen research methodology, with the research design more fully elaborated in Chapter 3. Background information regarding the researcher, including professional and theoretical orientation, will be also be provided in order to situate the researcher within the research context. Ruth Ruth was an unusual single woman for her era, born in 1929, university educated and well respected within her chosen field. While Ruth was diagnosed with rheumatoid arthritis in 1971, symptoms, such as joint inflammation and displacement, were first documented in 1962. Progressive disability, coupled with the physical and financial demands of caring for an ailing mother, precipitated an early retirement from a university position at approximately age 40. Ruth eventually relocated to western Canada in 1980, starting a patient-physician relationship with Dr. Lawson, who remained Ruth?s attending physician for 23 years. Ruth?s enquiring mindset and proactive stance towards the management of her health care was viewed as exemplary by health care providers as well as significant others. In 2 general, Ruth?s engagement with life was viewed as remarkable, particularly her pursuit of aesthetic interests, such as international travel, given the existence of severe and progressive deformities of her hands and feet. In her early 70?s, Ruth experienced an increased level of pain, which eventually became severe and unrelenting in nature. In the weeks prior to her death in 2003, Ruth sought medical assistance, initially through a locum physician for Dr. Lawson, and, finally, with a consulting rheumatologist, a referral that was instigated by Ruth at the recommendation of friends. According to the impression of significant others, Ruth understood, following these medical encounters, that nothing more could be done for her pain, and that she could only expect the pain to worsen. Over the next two days, Ruth made a final phone call to several close friends and extended family members. The used facial tissues later found surrounding Ruth?s couch bore witness to an emotional state that was otherwise private during these conversations. Without informing anyone of her intent, Ruth meticulously planned her suicide and left detailed instructions regarding the notification of others, including relevant professional contacts. After placing a note warning against entry on the bathroom door, Ruth took an overdose of pills, entered a full bathtub and slit her wrist. After several days, concerned elderly neighbours gained access to her apartment and discovered her body. A suicide note, quoted from the memory of the primary informant, Elizabeth, as related by the attending police officer, stated as follows: I, Ruth Williams, being of sound mind, have decided to take my own life. I have not been abetted or assisted by anyone. This is wholly my decision. I have been in severe pain since October and it is only getting worse. I am sorry for the distress this might cause my friends and family. Signed, Ruth Williams. 3 During the sorting of Ruth?s possessions, Elizabeth also discovered a video based on the book Final Exit: The practicalities of self-deliverance and assisted suicide for the dying by D. Humphry (1991). A detailed 40 year ?Medical Log,? documenting Ruth?s lived experience with rheumatoid arthritis was also discovered and, eventually, forwarded for research purposes. Overview of Rheumatoid Arthritis Rheumatoid arthritis is a chronic, painful and debilitating disease that affects approximately 1% of the Canadian population (Health Canada, 2003). Inflammation of the synovia (joint lining) leads to progressive degenerative changes which results in increasing disability and pain over time. Less frequently, general systemic disease activity may occur in the eyes, lungs and heart (Grennan & Jayson, 1994). There is no known etiology, although autoimmune dysregulation and microbacterial infections and genetic factors are predominant current theories (Grennan & Jayson, 1994; Walker, Littlejohn, McMurray, & Cutolo, 1999; Woolf & Pfleger, 2003). Likewise, there is no known cure. There are also significant gender related differences in both the occurrence and presentation of rheumatoid arthritis. Prevalence rates for women, as compared to men, are estimated to range from at least a 2:1 ratio (Health Canada, 2003) to a 4:1 ratio (Harrison, 2003). According to research by Weyand, Schmidt, Wagner and Goronzy (1998), the incidence rate for onset peaks for women between ages 31-35 and, again, after age 46, whereas men have a single peak incidence rate at age 36. According to Harrison?s (2003) research review of sex-based differences, women reportedly have higher levels of disease severity, disability, more surgical interventions, greater pain and higher rates of depression in comparison to men. Female gender, longer disease duration, worse functional class, low 4 disease activity and prior use of disease-modifying antirheumatic drugs (DMARDS) are all associated with the reduced effectiveness of pharmaceutical treatments (Anderson, Wells, Verhoeven & Felson, 2000). In particular, disease duration exerts a strong effect on treatment response, with a 53% response rate for ? 1 year, 38% for 5-10 years and 35% for ? 10 years of disease duration (Anderson, et al., 2000). Unfortunately, 36% of women do not receive treatment with DMARDS (Weyand et al., 1998), identified by Harrison (2003) as useful in providing symptomatic relief and slowing disease progression particularly when delivered aggressively during the early stages of the disease. Harrison (2003) underlined such treatments as particularly critical for women in the maintenance of an optimal quality of life, given the higher incidence of pain and disability in comparison with men. In addition, rheumatoid arthritis carries an increased risk for osteoporosis, with an associated risk of fractures with minor trauma (Woolf & Pfleger, 2003), which accentuates the need for active treatment as a preventative measure. Unfortunately, premature mortality is also associated with rheumatoid arthritis, given the effects of disease activity, comorbid conditions, such as cardiovascular and kidney disease, and toxicity from pharmaceuticals, as in the case of gastro-intestinal bleeding from non-steroidal anti-inflammatory drugs or NSAIDS (Health Canada, 2003). As a disease, rheumatoid arthritis is marked by uncertainty, given an unknown prognosis, unpredictable flare-ups and brief remissions of disease activity and pain. Pain, chronic fatigue and an unpredictable yet progressive disease course create considerable stress on the lives of affected individuals and their families (Bury, 1988; Revenson, 1993). Physical limitations and loss of control, as in maintaining independence and pain 5 management, are significant stressors for those with longstanding rheumatoid arthritis (Melanson & Downe-Wamboldt, 2003). According to a Finnish study by Hakala, Nieminen and Koivisto (1994), two-thirds of patients with rheumatoid arthritis were found to be mild to moderately disabled, with less than 10% severely disabled, the latter finding largely attributed to the early use of DMARDS and surgical interventions. Approximately 50% of individuals with rheumatoid arthritis are classified as work disabled 10 years following onset (Brooks, 1997, as cited in Woolf & Pfleger, 2003). There are significant financial and social costs with respect to lost productivity and health care costs for those with arthritis. In 1998, direct and indirect health costs from arthritis exceeded $4.4 billion dollars, excluding treatments and expenses not covered by universal health care (Health Canada, 2003). These costs are expected to increase given projections that 1:5 Canadians will have an arthritis-related condition by the year 2026 (Health Canada, 2003). Compared to other chronic illnesses, Canadians with arthritis, and related conditions, report more frequent utilization of health care services, greater pain and disability, greater levels of depression and sleep disturbances and greater need for daily assistance (Canada Health, 2003). Statement of the Problem Sociologists have situated the experience of chronic illness within the intersection of the self, body and culture (Bury, 1982; 1988; Charmaz, 1983; 1995; Corbin & Strauss, 1987; Frank, 1995; Williams, 1984). Morris (1991), in particular, has likened the understanding of pain to a mystery, rather than a puzzle, given the influence of the socio-cultural context coupled with the uniqueness of individual experience. However, psychological research, 6 situated within the standard biopsychosocial model, has typically marginalized the socio-cultural context when investigating the process of adjustment to rheumatoid arthritis, with researchers also noting that there exists ?little understanding of the meaning that individuals with rheumatic conditions construct about their illness and its impact on themselves, life, priorities, and future? (Walker, Jackson & Littlejohn, 2004, p. 467). Likewise, there has been no psychological research that has investigated the role of predominant cultural discourses within the constitution of identity or a coherent sense of self (Mahoney, 1991), subjectivity, or ways of being and seeing in the world (Davies & Harr?, 1990) and agency, or what can be said and done (Potter & Wetherell, 1987)) within the experience of rheumatoid arthritis. Lived experience has, therefore, been marginalized as a source of illumination as to the constitutive effects of predominant cultural discourses (Foucault, 1963/2003; Foucault, 1980; Scarry, 1985; Willig, 2000) and the inevitable contradictions, ambiguities and gaps contained within (Foucault, 1976/1990; Parker, 1992). While research has repeatedly documented the relationship between chronic illness, depression and suicide in the elderly, there is a lack of understanding as to the complex psychological, socio-cultural and biological risk factors (Conwell, Duberstein & Caine, 2002; Pearson, 2000). Given existing demographic trends regarding the aging of western populations, the incidence of chronic and painful degenerative illness and the potential for suicide will become increasingly relevant (Conwell et al., 2002). Likewise, there is widespread philosophical acceptance of suicide as a potentially rational option, particularly in the face of unremitting suffering, with endorsement extending to both physical concerns, such as pain and incapacitation and psychosocial concerns, such as being dependent or a burden to others (Humphry, 1991; Kleepsies et al., 2000; Rosenfeld, 2004; Sorenson, 1991). 7 Researchers have found that the majority of psychologists (psychotherapists) and registered social workers similarly endorse rational suicide (or physician-assisted suicide and euthanasia), a finding that underlines the need for psychological research to inform both standards and practice (Ogden & Young, 1998; Werth & Corbin, 1995) Rheumatoid arthritis has been identified as a chronic illness with an increased risk for suicide (Dorpat, Anderson, & Ripley, 1968; Pokorny, 1960). Treharne, Lyon and Kitas (2000) found that almost 11% of hospital outpatients with rheumatoid arthritis reported suicidal ideation, with gender (female), longer disease duration and depression associated with greater suicidal ideation. However, only one Finnish study (Timonen et al., 2003) has investigated the demographic and psychosocial characteristics of those with rheumatoid arthritis that have completed suicide based on a hospital discharge registry and death certificates. Timonen et al. (2003) found that women with rheumatoid arthritis were overrepresented when compared to the total suicide population, identifying depression as a significant influence in 90% of these suicides. However, such findings offer limited understanding of the inter-relationships between the chronic illness experience, psychological distress and eventual suicide within the intersection of culture, self and body over time. Rationale for the Study The present research was based on assumptions that are situated within postmodern ideas regarding the social construction of reality, in general, and the self, in particular (Berger & Luckmann, 1966/1967; Burr, 1995; Gergen, 1999, 2001). Constructions of reality exist through the interpretative stance of the knower with truth, or meaning characterized as multiple, partial and indeterminate, rather than absolute in nature (Derrida, 1988). According to social constructionist thought, truth claims are, therefore, discursive productions situated 8 with specific historical and socio-cultural contexts, established through processes of moral persuasion in that the taken for granted also becomes the right way of being and seeing (Berger & Luckmann, 1966; Gergen, 1999). Burr (1995) has defined discourse both as ?a systematic, coherent set of images, metaphors and so on that construct an object in a particular way? and as ?the actual spoken interchanges between people? (p.185). The latter presumes the influence of predominant cultural discourses within any spoken interaction, as with the implicit biomedical discourse typically represented within physician-patient interactions. According to Michel Foucault (1980), power and knowledge are inseparable given the effect of cultural discourses on the objects that are constructed. In this regard, a dominant cultural discourse, or ?regim? of truth? will create: the types of discourse which it accepts and makes function as true; the mechanisms and instances which enable one to distinguish true and false statements, the means by which each is sanctioned; the techniques and procedures accorded value in the acquisition of truth; the status of those who are charged with saying what counts as true (p. 131). While interested in the historical development of cultural institutions, Foucault was particularly interested in disciplinary practices that exerted social control by defining normality while segregating the abnormal in institutions such as the asylum (1961/1988), the medical clinic (1963/2003) and prisons (1975/1979). According to Foucault (1975/1979; 1980) individuals were also instrumental in their own subjugation through processes of self-surveillance through which their own minds and bodies were policed with respect to the normalizing gaze of disciplinary power. 9 As such, dominant cultural discourses are constitutive of individual identity, subjectivity and agency (Parker, 1992; 2002; Willig, 2000; 2001). In this regard, various ?subject positions? (Davies & Harr?, 1990), within these dominant discourses, such as ?patient? or ?expert? within the biomedical discourse, opens up various ?interpretative repertoires? (Potter & Wetherell, 1987) and ways of being. Numerous metaphors have been used to describe constructions of the socially emergent self, including the ?saturated self? (Gergen, 1991); the ?relational self? (Gergen, 1999); the ?discursive self? (Harr? & Gillett, 1994); ?the dialogical self? (Hermans & Kempen, 1993); ?possible selves? (Markus & Nurius, 1986); the ?polyphonic self? (Baktin, 1986) and ?self as internalized others? (Tomm, Hoyt, & Madigan, 1998). While socially constructed, the individual also has a need to organize ongoing awareness and experience into meaningful and coherent life narratives (Bruner, 1986; Polkinghorne, 1988). These narratives are expressed in language, both literally and figuratively, and are co-constructed within available personal, familial, social and cultural discourses (Burr, 1995; Bury, 2001; Polkinghorne, 1988). These embodied narratives explain, organize and proscribe lived experience. While constitutive of identity, subjectivity and agency, as well as, ongoing life narratives, the effect of cultural discourses are not necessarily apprehended by individual consciousness. According to Foucault (1980), ?power relations can materially penetrate the body in depth, without depending even on the mediation of the subject?s own representations. If power takes hold on the body, this isn?t through its having first to be interiorised in people?s consciousness? (p. 186). The individual is, thereby, so immersed and constituted by 10 dominant discourses that alternate ways of being may be very difficult to both comprehend and access. Foucault (1976/1990) viewed the body, or the embodied text, as the primary site where discourses, or ?bio-power,? (p. 140) were both enacted and resisted. Likewise, pain theorist, Scarry (1985) noted that the politics of various discourses are most evident at the intersection between the body and society. According to Scarry (1985): it might even be argued that the attributes of a particular political philosophy, its generosities and its failures, are most apparent in those places where it intersects with, touches or agrees not to touch, the human body?in the medical system it formally or informally sponsors that determines whose body will and whose body will not be repaired; in the guarantees it provides or refuses to provide about the quality and consistency of foods and drugs that will enter the body; in the system of laws that identify the personal acts toward another?s body that the state will designate ?unpolitical? (unsocial, uncivil, illegal, criminal) and that will thus occasion the direct imposition of the state on the offender?s body and the separation of that unpolitical or uncivil presence from contact with the citizens (p. 111). Dominant cultural discourses are, however, inherently unstable, and amenable to change in response to challenges by those otherwise marginalized. According to Foucault (1976/1990): discourses are not once and for all subservient to power or raised up against it, any more than silences are. We must make allowance for the complex and unstable process whereby discourse can be both an instrument and an effect of power, but also a hindrance, a stumbling-block, a point of resistance and a starting point for an 11 opposing strategy. Discourse transmits and produces power; it reinforces it, but also undermines and exposes it, renders it fragile and makes it possible to thwart it (pp. 100, 101). An understanding of the power of discourse within lived experience therefore includes the influence of both explicit and implicit references as well as inherent gaps, contradictions and inconsistencies. As with other dominant cultural discourses, the discipline of psychology (and related practices) has developed within a specific historical and socio-cultural context rather than reflecting a pre-existent discovered truth (Foucault, 1961/1988; 1980; Gergen, 1999; 2001; Parker, 1992; 2002). As a disciplinary power, psychology also has the potential to marginalize knowledge based on lived experience, a situated wisdom which may otherwise empower the individual (Freedman & Combs, 1996; Neimeyer & Raskin, 2000; White & Epston, 1990). The practice of psychology is, therefore, a political act necessitating reflective practices on the part of researchers and practitioners as to how the ?truths? of psychology restrain or facilitate preferred ways of being. According to Wetherell, Taylor and Yates (2001) the study of discourse has become a valid methodology for examining psychological issues for the following reasons: If language, however, is constructive and constituting, performative as well as referential, then any simple notion of good data as neutral and transparent descriptions of states of mind or events in the world becomes complicated. The turn to discourse in psychology, therefore, has involved a shift to studying talk in itself rather than quick detours past the words and the doing with words to some assumed mental state or underlying behavioural pattern. Discourse has become interesting per 12 se rather than being taken for granted as a direct access route to the real psychological business (p. 188). Burr (1995) has defined discourse analysis as ?the analysis of a piece of text in order to reveal either the discourses operating within it or the linguistic and rhetorical devices that are used in its construction? (p.185). Discourse analysis has been promoted as a methodology critical to understanding notions of subjectivity and agency (Burr, 1995; Parker, 1992, 2002; Potter & Wetherell, 1987; Wetherell, Taylor, & Yates, 2001; Willig, 2001), particularly within the experience of health and illness (Lupton, 1992; Roger, 1996; Willig, 2000; Yardley, 1996). However, as a research methodology, discourse analysis has been largely ignored within the fields of health or counselling psychology. In particular, there have been no research studies utilizing a discourse analytic approach to investigate issues of identity, subjectivity and agency within the lived experience of a painful chronic illness, such as rheumatoid arthritis. As a discipline, psychology has, therefore, been hindered from comprehending the impact of various cultural discourses (including psychological) on lived experience, remaining disempowered as an agent for change. According to Gergen (1999), if we create our worlds largely through discourse, then we should be ever attentive to our ways of speaking and writing. Through reflexive inquiry on our ways of constructing the world, and the practices which they sustain, we open doors to emancipation, enrichment, and cultural transformation (p.115). While strongly influenced by social constructionist thought, the present research viewed the research subject, or diarist of the main archive, through a constructivist-narrative lens (Freedman & Combs, 1996; Mahoney, 1991; Neimeyer & Mahoney, 1995; Neimeyer & 13 Raskin, 2000; White & Epston, 1990). In this regard, the body (Williams, 1999) and organic core-ordering processes (Mahoney, 1991) were regarded as essential to being, or ontological reality, whereas epistemological reality, or ways of knowing were regarded as socially constructed and, therefore, relativistic. As such, the self of the subject was viewed as relatively stable but amenable to change over time. Purpose of the Study In the present research, I investigated various cultural discourses that constituted the identity, subjectivity and agency of Ruth, a woman who had lived with rheumatoid arthritis over a 40 year time period. A 40 year medical log, which documented Ruth?s lived experience with rheumatoid arthritis, served as the primary research text. In this study, I addressed a critical gap in research understanding regarding the impact of cultural discourses on the lived experience of chronic illness, in general, and rheumatoid arthritis, in particular. Documentation of lived experience over a 40 year period also provided a unique opportunity to understand how identity, subjectivity and agency was constituted over time, including how various discourses were appropriated and resisted. In turn, research findings illuminated gaps, ambiguities and inconsistencies within various discourses, while articulating benefits and losses to self, others and institutions within their practice. In particular, the investigation of Ruth?s lived experience illuminated discourses that were constitutive of her decision to commit suicide in the presence of severe end of life pain. In addition to the above theoretical interests, I was motivated by significant ethical considerations. According to Scarry (1985), those in intense physical pain require an advocate, or, at least, an empathetic witness, in order to provide ?worldly self-extension,? (p. 50), thereby maintaining the individual?s life engagement and hope. This moral imperative 14 rests on understanding that those in severe pain are otherwise disempowered, given the annihilating and totalizing effect of pain on consciousness, coupled with the inherent difficulties in self-expression and representation (Scarry, 1985). Scarry (1985) links difficulties with verbal representation and social visibility to political representation and advocacy, noting that physical pain remains more under represented that any social concern as it is not simply somewhat less easy to express than some second event, not simply somewhat less visible than some second event, but so nearly impossible to express, so flatly invisible, that the problem goes beyond the possibility that almost any other phenomenon occupying the same environment will distract attention from it. Indeed, even where it is virtually the only content in a given environment, it will be possible to describe that environment as though the pain were not there (Scarry, 1985, p.12). In response to the above ethical dilemmas, Scarry (1985) has recommended that the ?de-objectifying work of pain? (p. 6) be undone through objectifying pain in the arena of public discourse. Scarry (1985) has recommended many avenues for doing so, including through the externalization of the voice of the sufferer, either in personal recollection or through the memory of others or through medical contexts, such as patient-doctor interactions and medical case histories. In this regard, through the present research, I sought to give voice to Ruth?s experience of pain and chronic illness, both through first person documentation, as in medical and personal archives, and through the recollections of others. Given that shared sentience forms the basis of empathy (Scarry, 1985; Williams, 1999), the research substantiation of Ruth?s embodied experience will potentially foster empathetic engagement 15 in the reader, and in turn, an enlightened advocacy on behalf of those who are suffering severe pain. Research Question The research question was stated as follows: ?How does the 40 year Medical Log of a woman with rheumatoid arthritis illuminate discourses that are constitutive of the experience of living with a chronic painful illness?? A discourse analytic methodological approach (informed by Parker, 1992 and Willig, 2001) was used to investigate the Medical Log, the primary research archive. Such an approach, explicated in Chapter 3, permitted the analysis of discourses that were constitutive of Ruth?s identity, subjectivity and agency, within lived experience with rheumatoid arthritis, at the intersection of self, body and culture. Locating Self as Researcher As a practitioner and researcher, I situate myself theoretically within a constructivist-narrative framework (Freedman & Combs, 1996; Mahoney, 1991; Neimeyer & Mahoney, 1995; Neimeyer & Raskin, 2000; White & Epston, 1990). I have had the privilege of caring for individuals with various chronic illnesses, including rheumatic diseases, both as a former nurse and, presently, as a counsellor in private practice. I have witnessed the impact of various cultural discourses in the lives of clients as they attempted to create a meaningful present and future. Their metaphors have frequently become gifts as I have faced the inevitable suffering that comes with living. I have learned, through their sharing, to become a more empathetic witness. 16 During this research project, my husband was also diagnosed with a devastating painful illness, metastatic cancer. While I am not ready to openly reflect on this experience, his suffering, and that of my family, has profoundly influenced my understanding of the lived reality of a chronic, painful and deteriorating illness. I have experienced the social and medical world, in particular, through the multiple lenses of spouse, former nurse, counsellor and researcher. I am well acquainted with the hopes and limitations of the medical discourse. I have been influenced by the ideas of White (1988) regarding the ongoing social presence of individuals who have died and the need to bring forward and honour that social reality in the present. I believe that Ruth is socially present, particularly to those who love her, and that she is deserving of the same ethical processes given to individuals who are living. Secondly, I regard suffering as existing primarily within a moral realm (Charmaz, 1999; Frank, 1995; Scarry, 1985) and, as such, see myself as standing on sacred ground. 17 CHAPTER 2: LITERATURE REVIEW This chapter will provide a broad overview of biomedical, psychological and suicide-related discourses deemed relevant to the study of rheumatoid arthritis. Each section begins with a brief historical overview, situating various discourses within specific historical and socio-cultural contexts. The overview is limited to historical influences underpinning western thought and practices with the understanding that other cultural and historical contexts would vary considerably as to how discourses have developed and, in turn, constituted lived experience. Special emphasis will be given to research regarding the elderly and those with longer disease duration given that Ruth, the author of the Medical Log, was 73 years of age at the time of her death, having lived with rheumatoid arthritis for approximately 40 years. MEDICAL DISCOURSE AND RHEUMATOID ARTHRITIS Historical Overview of Medical Discourse Grossman (1966) traced historical references to arthritic diseases back to the time of the Greek physician, Hippocrates, although the term ?rheumatoid arthritis? was not introduced into the medical lexicon until 1859 (Bywater, 1988). According to ancient Greek formulations of rheumatism or ?rheumatismos,? symptoms were thought to be caused by ?mucus (catarrh),? an ?evil humor? which flowed from the brain to body and joints causing pain. (Hollander, 1966, as cited in Shafii, 1973, p.86) Throughout the 19th century, humoral notions of causation predominated, with an etiology determined by the influences of climate, trauma, toxins and constitutional predispositions (Bywater, 1988). The exact nature of the disease was deciphered through an exploration of each patient?s lifestyle, morality and 18 environmental context, with equilibrium restored through treatments such as cupping, bleeding and purging (Lawrence, 1994 as cited in Bury, 2001). The Greek tradition of mind-body holism was challenged during the Renaissance by the dualistic views of Descartes in the 17th century (Gatchel, 1999). For example, Descartes conceptualized pain as a peripheral stimulation transmitted directly to the brain without reference to constitutional or environmental influences (Gatchel, 1999). Likewise, the development of the medical clinic in the 18th century situated care apart from the patient?s environment, further justifying the exclusion of the person in order to comprehend the ?truth of the pathological fact? (Foucault, 1963/2003, p.7). The discovery of the role of microorganisms in the etiology of disease during the 19th century further consolidated the bioreductionistic lens of the physician (Gatchel, 1999). In consequence, the physician?s role shifted from that of teacher and spiritual advisor to that of a scientist, with disease understood as a deviation from a standardized norm, rather than a disturbance within an otherwise natural equilibrium (Gatchel, 1999; Lawrence, 1994 as cited in Bury, 2001). By the early 20th century, theories of micro-biological causation predominated, remaining at the forefront for approximately 70 years (Bywater, 1988). Various body parts, such as teeth, tonsils, appendices, gallbladders and colons, were presumed to be infected, and, in consequence, surgical removal, with vaccine therapy an associated treatment of choice (Bywater, 1988). Other seemingly innocuous theories, such as the presumed etiological role of calcium in the 1930?s, led to treatment by parathyroidectomies and Vitamin D which occasionally resulted in irreversible kidney failure and death (Bywater, 1988). Theories implicating the central nervous system and psychogenesis resulted in the use of electroconvulsive and insulin shock therapies as part of treatment (Hart, 1976). 19 Hundreds of extraordinary folk cures and medical treatments have been recommended over time, in part fueled by a disease process that is unpredictable in both exacerbations and inexplicable remissions (Hart, 1976). For example, purported cures have included the ingestion of fresh crow meat, the topical application of fermented earth worms and standing inside the carcass of a whale (Hart, 1976). Hart (1976) referenced the Lourdes-like atmosphere surrounding rheumatology clinics following the discovery of cortisone in 1940, an enthusiasm that quickly subsided on discovery of adverse side effects and a lack of long term benefit (Mooreland, Russell, & Paulus, 2001). In general, much of the 20th century was marked by poor treatment outcomes, with medical management focused on the identification and prevention of adverse treatment effects (Wolfe et al., 2001). Present Biomedical Discourse The etiology of rheumatoid arthritis remains unknown, with present theories implicating genetic and microbiological factors (Grennan & Jayson, 1994) and autoimmune dysfunction (Walker, Littlejohn, McMurray & Cutolo, 1999). According to the American College of Rheumatology (ACR) 2002 guidelines, treatment goals are geared towards prevention or control of joint damage, loss of function and pain. Assessment of disease activity includes a number of subjective measures (including joint pain; morning stiffness; fatigue and functional limitations), physical examination (including the number of affected joints; mechanical joint problems; extra-articular involvement and radiography), laboratory tests (including erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) and the Rheumatoid Factor (RhF), with the latter performed only at baseline assessment if found positive. (ACR, 2002). Complete remission reportedly occurs infrequently and is determined 20 by the absence of subjective and clinical indicators, the absence of progressive joint damage as well as normal ESR and CRP laboratory findings (ACR, 2002). The treatment of rheumatoid arthritis is primarily pharmaceutical, with nonsteroidal anti-inflammatory drugs (NSAID) used to control pain and inflammation. Newer NSAIDS, such as COX-2 inhibitors, avoid some of the serious toxic side effects of generic NSAIDS, such as Aspirin, but are more costly and carry the risk of cardiovascular complications (ACR, 2002). Disease-modifying anti-rheumatic drugs (DMARDS) are used early in diagnosis to slow or prevent joint damage as well as for the symptom management of joint pain, morning stiffness and fatigue (ACR, 2002). While the use of DMARDS has been universally endorsed since the mid-1980?s (Hakala et al., 1994), 36% of women do not receive such treatment (Weyand, Schmidt, Wagner & Goronzy, 1998). The underutilization of DMARDS is particularly significant for women given the greater pain and disability experienced by women in comparison with men (Harrison, 2003). A lessened treatment response is also associated with gender (female), disease duration of over 10 years, low disease activity, higher disease functional class and previous use of DMARDS (Anderson et al., 2000), the latter finding underlining the partial and temporary benefit typical of present treatments (Moreland et al., 2001). Newer biological response modifiers directly block inflammatory processes but carry considerable risks as they also inhibit defenses against infections and the growth of tumours (Moreland et al., 2001). Surgical interventions may include joint fusion and joint replacement (ACR, 2002), with the reported incidence of procedures higher for women than men (Weyand et al., 1998). 21 While the American College of Rheumatology (ACR, 2002) endorses a multidisciplinary approach, including nurses, physical therapists, social workers and psychologists, they are referred to as nonpharmacological treatments, a term that appears to position their importance as adjuncts to drug regimens. Patient adherence to recommended treatment is variable, with a 33-78% rate reported for prescribed medications and 38-66% for physical therapy (Bradley, 1989 as cited in Young, 1992). Given the limited benefits of available treatments, those with rheumatoid arthritis frequently consider various alternative and complementary treatments for symptom management. According to Herman, Allen, Hunt, Prasad and Brady (2004), 86.4% of patients with rheumatoid arthritis within a primary care setting had tried alternative and complementary treatments, with 70.7% reporting current use. At the time of the study, the most frequent treatments reported included relaxation (16.3%); glucosamine (15.8%) meditation (11.1%) and Vitamin C (10.0%). Utilizers tended to be younger, more highly educated and had a mean disease duration of 15.3 years. Herbal and dietary supplements that have shown promise in the treatment of inflammatory pain include Vitamin E, gamma-linoleic acid (GMA) and fish oil (Taibi & Bourguignon, 2003). In addition, research has suggested that dietary modifications, such as the removal of allergens, nightshade vegetables (white potatoes and peppers) as well as meat and dairy products, may result in symptomatic improvement (Taibi & Bourguignon, 2003). There are justifiable medical concerns as to whether or not such treatments have been scientifically validated, or whether treatment contraindications exist for prescribed medications (Taibi & Bourguignon, 2003). For example, commonly used herbal supplements, such as melatonin and echinacea, may have potentially harmful effects for 22 those with an impaired immune system (Taibi & Bourguignon, 2003). In addition, certain alternative treatments, such as acupuncture, yoga and Tai Chi may be beneficial for various health-related concerns yet lack empirical support for their use with rheumatoid arthritis (Casimiro et al., 2005; Taibi & Bourguignon, 2003). In her autobiographical account below, Grace Stuart (1953) spoke eloquently of the search for a cure both within ?quackery? and within the standard medical treatments of her time that, in retrospect, were pointless. But there might?or so one thought?always be some other, some more acceptable discipline, and so, even within respectable confines of the medical world, how wildly we dashed, we others, from the favoured approach this year to the favoured approach of the next, losing as we went our teeth, our tonsils, our appendixes, and retaining with difficulty some odds and ends of stomach and intestines with which still to function?losing as we went, I?m afraid, our confidence, our hope and our heart! Protein shock therapy, insulin, vaccines by the score, massage, rays, injections, diets, those revolting poultices of sticky grey anti-phlogistine?on and on and on?self-tied, and socially and medically bound, to the endlessly turning wheel of the endlessly failing ?cure? (p. 94). Limitations of Biomedicine Medicine, as a disciplinary power, exists as an ?objectivated? (Berger & Luckmann, 1966/1967, p. 34) human activity, or a product of cultural values and practices that exist within a specific historical context (Berger & Luckmann, 1966/1967; Foucault, 1963/2003). In this regard, the present biomedical reliance on science and technology also reflects western culture?s allegiance to rationalism and the grand narrative of scientific progress 23 (Hauerwas, 1990). However, medical sociologists, such as Lorber (1997) and Turner (1987) have critiqued the biomedical model as neglecting the complex social, personal and environmental factors which not only intersect with the body in the etiology and expression of disease and disorders but also have serious ramifications in the delivery of medical care. Lorber (1997) uses a feminist critique of medical practice research, highlighting the differential effect of gender in the delivery of health care for women. For example, Lurie et al. (1993) found that women were less likely to have regular Pap smears and mammograms if their physician was male, particularly in a general practice or internal medicine setting. Turner (1987) singled out societal attitudes towards aging as a factor in the marginalization of health care resources for the elderly, a population that carries the largest symptomatic burden associated with chronic illness (Conwell et al., 2002). Charmaz (1983) has also critiqued westernized medical care as geared towards acute, rather than chronic care, rendering inadequate information, fragmented care and insufficient support to patients and their overburdened care givers. These critiques are relevant for those with rheumatoid arthritis, given that patients typically describe a lack of support, education and partnership within their relationships with health providers (Fair, 2003), while informal caregivers, typically partners, report a substantial care-giving burden (Brouwer, et al., 2004). According to Waitzkin and Britt (1989) direct medical encounters with patients also frequently reinforce oppressive social-cultural conditions in that technical responses are encouraged while disclosures related to social context are marginalized and micromanaged by the physicians? use of ?interruptions, cutoffs, deemphases, or silences? (p. 438). Likewise, ten Have (2002) described the typical medical consultation as proceeding according to a biomedical agenda, with the physician acting as a professional host and the 24 patient as a lay guest. According to ten Have (2002) tension frequently exists during the verbal examination as the patient may want to elaborate a personal story whereas the physician may seek diagnostic clarity. However, physicians appear to shift responsibility for the outcome to patients during times of dilemma, diagnostic conflict, or interactions regarding psycho-social concerns (ten Have, 2002). In recent decades, the social structure of physician-patient interactions has shifted, given patient challenges to the implicit power asymmetry within the relationship (ten Have, 2002). Likewise, Dixon-Woods (2001), in an investigation of patient information leaflets, discovered two predominant discourses regarding the health care provider-patient relationship, that of the patient as inexpert and in need of direction and education and that of the patient as educated and empowered, capable of a collaborative relationship with professionals. Anspach (1988) investigated the rhetorical devices used in medical case presentations and found that patients were depersonalized in that their personhood was separated from biological processes and that their accounts were marked as subjective, as in ?states,? ?reports,? and ?denies,? (p. 368) leaving implicit questions regarding accuracy and validity. In contrast, physician?s accounts were offered as objective, as in ?note,? ?observe,? or ?find,? while technology ?revealed,? or ?showed,? information, the latter suggesting processes of revelation rather than interpretation (Anspach, 1988, p. 368). Unfortunately, the objective assessment of rheumatoid arthritis is fraught with difficulties, given inconsistent symptom presentation, unexplained exacerbation and remissions of disease activity coupled with a low rate of incidence that may result in physician inexperience (ACR, 2002; Newman & Revenson, 1993). Pain is also a subjective 25 experience that may occur without objective clinical markers that coincide with the persistence and severity of patient reports (Boulanger et al., 2007; Rich, 1997). According to a recent Canadian survey, (Boulanger et al., 2007), of the 25% of the general population who reported chronic pain, 37% reported moderate pain and, 51%, severe pain, with 28% of the latter group also reporting that they were not taking any prescribed analgesics. Primary care physicians identified arthritis (types unspecified) and inflammatory conditions as the most frequent cause of chronic pain (31%), followed by back and spinal conditions (21%) (Boulanger et al., 2007). According to bioethicist Rich (1997), the undertreatment of pain, particularly noncancer pain, persists in spite of the ethical imperative to relieve pain and suffering, as contained within the Hippocratic Oath. Rich (1997) attributed the under prescription of analgesics by physicians, particularly opiates, to inadequate education, fears regarding prescription abuse as well as fears regarding regulatory or legal repercussions. According to Scarry (1983), one of the most frightening aspects of severe pain is that it may remain unacknowledged and, even denied, by others while dominating consciousness. While understanding pain depends on the physician?s ability to ?coax it into clarity, and interpret it,? the experience of many patients ?would bear out the opposite conclusion, the conclusion that physicians do not trust (hence, hear) the human voice, that they in effect perceive the voice of the patient as an ?unreliable narrator? of bodily events, a voice which must be bypassed as quickly as possible so that they can get around and behind it to the physical events themselves? (Scarry, 1985, p. 6). Rich (1997) identified the substandard medical management of pain as a significant factor inherent within the physician-assisted suicide debate, a dialogue now represented 26 within the regulatory and legal arenas. The Joint Commission of Accreditation on Healthcare Organizations has identified pain as the fifth vital sign that requires monitoring (Gatchel et al., 2007) while the Federation of State Medical Boards of the United States recommended that under treatment of pain be a practice violation along with other prescribing violations (Barclay, 2004). The bioreductionism implicit within medicine also has direct effects on the experience of chronic illness, given that the body becomes objectified as ?a project for the self to work on? (Gordon, 1988 as cited in DiGiacomo, 1992, p.122). According to Charmaz (1983), Anglo-Saxon values privileging independence, privacy and family autonomy further consolidate feelings of personal responsibility, while an underlying Protestant work ethic may further constrain the acceptance of assistance without guilt. Grace Stuart (1953), in her autobiographical account of life with rheumatoid arthritis, A Private World of Pain, alluded to the social consequence of the work ethic, noting that strenuous treatment efforts received social endorsement while time off as a self-care strategy was questioned. The biomedical model has been frequently critiqued for the marginalization of the chronic illness experience and the attendant suffering (Bury, 2001; Charmaz, 1983; Hauerwas, 1990; Kleinman, 1988). Within the experience of rheumatoid arthritis, such marginalization frequently creates a disjuncture between physician-patient understanding of the significance of symptoms. According to Hewlett (2003), ?patients? assessments may be influenced by their needs, priorities, experiences, expectations, and attitudes, while professional opinions may be more directly related to the patient?s physical health status?perhaps patients rate their illness while professionals rate the disease? (p. 878). Such disparities contribute towards less effective clinical interventions, with patient dissatisfaction 27 leading to treatment noncompliance, referral to another provider, or complete withdrawal from traditional treatments (Fair, 2003). According to Bury (1982), biomedicine provides a significant cultural service to those affected by rheumatoid arthritis in the provision of ?an objective fixed point on a terrain of uncertainty? (p. 179). However, Bury (1982) identified such knowledge as problematic in that ?such knowledge itself often turns out to be ambiguous and limited. Rheumatoid arthritis thus appears as a definite entity, yet its implications for the future are uncertain. Such knowledge is incomplete and has to be supplemented by, and set against, a body of knowledge and meaning drawn from the individual?s own biography? (p. 179). According to Bury (2001), the increase in degenerative chronic illness, the greater egalitarianism in physician-patient relationships and the proliferation and accessibility of health-related information has spurred sociological investigation into illness narratives. In this regard, Bury (2001) identified three types of illness narratives: contingent narratives, or beliefs about etiology, symptom causes and their immediate effects; moral narratives, which address changes between the person, illness and social identity, as well as core narratives, which reflect deeper cultural connotations associated with the illness experience. Kleinman (1988) has called for the ?remoralization? of medical practice through ?empathetic witnessing,? ?the existential commitment to be with the sick person and to facilitate his or her building of an illness narrative that will make sense of and give value to the experience? (p. 54). According to Hauerwas (1990) such narratives must be individually constructed given that western society lacks a grand communal narrative of suffering which would otherwise direct the process. 28 The complete relational separation between the medical professional and the experiential reality of the patient was poignantly evident within the autobiographical account of Grace Stuart (1953). This emotionally evocative narrative documented a life lived with the pain of rheumatoid arthritis from the age of 19 onwards, published when the author was 55 years of age. Grace Stuart (1953) dedicated her memoir to her physician, describing him as beloved, whereas Dr. Malin?s commentary focused on the significance of the discovery of cortisone while making no mention of their relationship. The medical discourse apparently hindered the physician from voicing anything other than ?scientific? knowledge. Summary of Biomedical Discourse and Rheumatoid Arthritis Past and present medical discourses, particularly regarding the etiology and treatment of pain and rheumatoid arthritis, are embedded within specific cultural and historical contexts, underlined by shifting philosophical orientations (Bury, 2001; Bywater, 1988; Gatchel, 1999). As is evident in the excerpts taken from the autobiography of Grace Stuart (1953), biomedical discourses have real effects on the creation of meaning within the experience of rheumatoid arthritis. The body of the elderly, in particular, constitutes an archive of professional discourses that have shifted over time. The predominant biomedical discourse has been extensively critiqued for the use of a scientific lens which marginalizes the social-cultural surround as well as the lived experience of a chronic illness, such as rheumatoid arthritis (Charmaz, 1983; Bury, 1982; 1988; 2001; Fair, 2003). However, the epistemological rationalism inherent within such bio-medical practices also reflects the institutional reification of societal values (Berger & Luckmann, 1966/1967; Foucault, 1963/2003), such as those represented by the grand narrative of scientific progress (Hauerwas, 1990). As such, the biomedical lens situates rheumatoid 29 arthritis and symptomatic pain, as a rational puzzle to be solved rather than as a mystery to be understood within the intersection of self, body and culture (Morris, 1991). PSYCHOLOGICAL DISCOURSE AND RHEUMATOID ARTHRITIS Historical Overview of Psychological Discourse Psychogenic factors were implicated in the etiology of rheumatoid arthritis as early as 1909 during the time of Freud (Jones, 1909 as cited in Lerman, 1987). Franz Alexander (1950), ?the father of psychosomatic medicine,? included rheumatoid arthritis among seven diseases that were purportedly caused by unconscious conflicts, including ?hypertension, neurodermatits, bronchial asthma, hyperthyroidism, ulcerative colitis and peptic ulcer? (as cited in Brady, 1998, p. 77). In particular, the rheumatoid personality or ?rheumatoid? (Spergel, Ehrlich & Glass, 1978, p. 79) was characterized as perfectionistic, controlling and self-sacrificing with repressed hostility somatically enacted through muscular tension and bone deformities (Brady, 1998; Lerman, 1987; Shafii, 1973; Spergel et al., 1978). Such individuals also had unresolved conflicts with parental figures who were, in turn, described as authoritative and unaffectionate (Brady, 1998; Spergel et al., 1978). In addition, difficulties with intimacy appeared to be presumed given references to a higher than normal divorce rate (Spergel et al., 1978), an impression that has not been confirmed by research over time (Revenson, 1993). Shafii (1973) described the ancient wisdom of a Persian physician Razi (AD 850) as consistent with the modern psychodynamic treatment of rheumatoid arthritis. According to Shafii (1973), Razi created a threatening therapeutic encounter with King Amir Mansur ibn Nuh ibn Nasar that helped him ?to unlease and liberate his internal anger and hostility. This dramatic encounter helped the patient realize the destructive forces within himself and 30 encouraged him to experience and express these aggressive feelings directly? (p. 85). Razi?s treatment included pouring hot water over the immobile body of the king (until the humours flowed), shouting and swearing until the enraged king rose to his knees, and then threatening the king with a knife until the king stood up, a recovery that eventually resulted in lavish gifts of gratitude (Shafi, 1973). The impact of the discourse of the rheumatoid personality, as characterized by repressed instinctual anger, is clearly evident within the autobiographical account of Grace Stuart (1953) as follows: Suppose a person to be born with some latent defect whose nature is as yet insufficiently known but whose effect is to produce an increasing disability of muscle and joint, and to lead in due course to a state in which all energetic movement of the body (not only walking and running but releasing movement of the hands in, shall we say, mixing a cake or pounding a typewriter, or even writing out the urgent catharsis of words through the end of a pen) is impossible!?. For myself, in moments of very reasonable anger which might very reasonably have been dispersed in any more normal life than mine, I have found that unable to bear any longer the unexpressed rage of the body in the ?relaxed? lying position which best preserves what is left of the mobility of the joints, I have gone and cleared up the kitchen, or made a batch of cakes. But even then I cannot clean a pan or a sink with enough speed and vigour to work off the slightest impulse of aggression. And in the midst of mixing a cake the eyes may fill with tears of rage and frustration because the hand and arm will not move the mix. There is no release! No catharsis!? (p. 45) 31 This brilliant woman, educated in literature and psychology at Oxford, married to a minister, wrote an autobiography in response to notions that symptoms of pain and disability were symbolic of a desire to avoid the challenges and responsibilities of life. The existence of a premorbid ?rheumatoid personality? has not been established by research (Brady, 1998; Lerman, 1987), with Spergel et al. (1978), in particular, finding a lack of distinction in the Minnesota Multiphasic Personality Inventory (MMPI) personality profiles of those with rheumatoid arthritis in comparison to those with other chronic illnesses, such as peptic ulcers, low back pain and multiple sclerosis. While Freud?s theories of psychogenesis created an additive burden to suffering through psychopathologizing, such theories also challenged the Cartesian split between organic and psychological influences, particularly in regards to the experience of chronic pain (Gatchel, 1999). However, the gate theory of pain, as advanced by Melzack and Wall (1965) was the first model to fully integrate psychological and physiological processes, given the inclusion of the central nervous system in the perception of pain (as cited in Gatchel, 1999). In 1977, psychiatrist Dr. Engle critiqued the biomedical model as essentially reductionistic, proposing a more comprehensive ?biopsychosocial model? through which to understand the social, psychological and behavioral aspects of illness (Engel, 1977). Most recently, Gatchel et al. (2007) and Walker et al. (2004) advocated for the theoretical inclusion of the stress regulatory system within biopsychosocial models of chronic pain and rheumatoid arthritis, respectively. Present Biopsychosocial Discourse According to the biopsychosocial model within the field of chronic pain, pain perceptions result from a complex interaction between physiological, neurological, genetic, 32 psychological, cognitive and social factors that are unique to the individual (Gatchel et al., 2007). Likewise, within the field of rheumatoid arthritis, pain, functional limitations and associated disability are conceptualized as under the reciprocal influence of biological factors, psychological factors, such as affect (i.e., depression and anxiety), personality traits and coping strategies (including appraisals of self-efficacy), as well as social-environmental factors, such as psychosocial functioning, interpersonal stress and support (Keefe, Smith, Buffington, Gibson, Studts, et al., 2002; Walker et al., 2004). For example, for those with a painful chronic condition, such as rheumatoid arthritis, emotional distress, such as anxiety, depression and anger, may ?predispose people to experience pain, be a precipitant of symptoms, be a modulating factor amplifying or inhibiting the severity of pain, be a consequence of persistent pain, or be a perpetuating factor? (Gatchel et al., 2007, p. 599). Within the field of rheumatoid arthritis, cognitive-behavioural strategies that attempt to alter maladaptive cognitions, thoughts and emotions, are theoretically based on Lazarus and Folkman?s (1984) transactional model of stress and coping, whereby stressors, such as pain, are interpreted as harm/loss, threat or challenge, followed by a secondary appraisal as to whether or not resources and agency are sufficient for successful coping (as cited in Walker et al., 2004). The work of Bandura (1982) theoretically underlines the linkage of agency to self-efficacy within coping (as cited in Walker et al., 2007). In general, coping strategies are typified as those that are active, or problem-focused (such as information seeking and actions towards problem remediation), or those that are passive, or emotionally focused (such as cognitive reframing and avoidance) with the appropriateness of the strategy context-driven (Walker et al., 2004). 33 The relationship between pain, emotions and coping has been extensively researched within the field of rheumatoid arthritis, with findings that underline the complexity of the relationships between variables (Huyser & Parker, 1999; Keefe, Lumley, Anderson, Lynch & Anderson, 2001). In a population of 361 patients with rheumatoid arthritis (mean disease duration of 3.37 years), active coping was associated with a greater self-efficacy and lower depression, helplessness, pain and functional impairment with passive coping correlated with opposite effects (Brown & Nicassio,1987). Likewise, Flor and Turk (1988) found that for individuals with either chronic back pain or rheumatoid arthritis (average disease duration of 10.5 years); coping self-statements and measures of resourcefulness were associated with less pain and disability with reverse findings for catastrophizing self-statements and measures of helplessness. Other researchers have similarly linked catastrophizing, or a perception that pain cannot be reduced or controlled, to higher levels of pain, disability and depression (Keefe, Brown, Wallston & Caldwell, 1989). Research by Katz (2005) underlined certain coping strategies as particularly significant for the preservation of function for those with an established disease process (mean disease duration of 18.6 years). According to Katz (2005), coping through perseverance (in response to pain, fatigue, physical limitations, joint changes and symptom unpredictability) rather than through accommodation, active remediation or social strategies, resulted in the greatest maintenance of function over time. van Lankveld, van?t pad Bosch, van de Putte, N?ring and van der Staak (1994) found that specific coping strategies were also particularly important for the maintenance of well-being for those coping with the challenges (i.e., pain, limitations and dependence) of an established disease process (mean disease duration of 13 years), even when measures of 34 disease activity, functional limitations and pain were controlled for. While higher levels of pain were found to be negatively associated with well-being in general, comforting cognitions, as a coping strategy, was positively associated with well-being, whereas decreasing activity was negatively associated with well-being. In addition, distraction, as a coping strategy for pain, was found to be positively associated with cognitive measures of well-being but not associated with affective measures of well-being. Optimism was found to be the strategy most positively associated with well-being in regards to coping with limitations whereas consideration (for the needs of others) was positively associated with well-being for coping with dependence. Acceptance was not associated with well-being in regards to coping with dependence. In contrast, Treharne, Kitas, Lyons and Booth (2005) found that optimism, or a belief in positive future outcomes, was associated with less pain, depression and greater life satisfaction for those with early and intermediate disease duration but higher pain levels for those with an established disease process. The authors suggested that optimism, as a coping strategy, might be detrimental to adaptation for those with severe pain (Treharne et al., 2005). Bartlett, Piedmont, Bilderback, Matsumoto and Bathon (2003) also found that measures of spiritual transcendence were predictive of positive affect and positive health perceptions, even when controlling for age, disease activity, physical functioning and depression. In this regard, Zautra and Manne (1992) suggested that coping strategies may be effective through the enhancement of positive affect, rather than through the altering of negative affect, a distinction that requires further research elaboration. The assessment of depression, in particular, is fraught with methodological difficulties given that the somatic features of rheumatoid arthritis, such as fatigue and a sleep 35 disturbance, render assessment tools vulnerable to an inflation bias (Young, 1992). Research efforts to establish consistent casual links between pain, depression and coping remain controversial (Parker & Wright, 1995). For example, psychological variables, such as anxiety and depression, have been found to be predictive of pain and functional impairment, even when disease activity and severity were accounted for (Hagglund, Haley, Reveille & Alarc?n, 1989). Likewise, Smith, Christiansen, Peck and Ward (1994) found that cognitive distortions (catastrophizing, overgeneralization, personalization, and selective abstraction) and helplessness predicted higher levels of depression over a 4 year period for 92 patients with rheumatoid arthritis. However, in a longitudinal study involving data collection at six month intervals over a three year period, Brown (1990) found that pain predicted depression, particularly during the last 12 months of the study. Likewise, Schiaffiano, Revenson and Gobofsky (1991) found that severity of pain was associated with greater depression and disability at baseline for those recently diagnosed with rheumatoid arthritis, with pain severity associated with greater depression at 12 month follow-up. In a four-year longitudinal study involving 648 individuals with rheumatoid arthritis, Katz and Yalin (1993) found a prevalence rate of 15-17% for depression, with those who were depressed reporting 3.6 times more painful joints, 69% higher pain ratings and 2.3 more times active disease activity in comparison to those who were not depressed. In addition, those who were depressed had significantly more medical and inpatient hospitalization for treatment of the disease process. Depression was also associated with an unmarried state, a disease of longer duration and more comorbidities in contrast to those not depressed, with previous depression greatly increasing the probability of depression in subsequent years. Covic, Tyson, Spencer and Howe (2006), in a cross-sectional survey involving 134 patients 36 with rheumatoid arthritis, found numerous psychological and physical variables that were predictive of depression. The top three psychological predictors of depression, also the most significant globally, included tension (including difficulties with relaxation), self-esteem and the perceived impact of the disease, particularly in recreational and physical arenas. The top three physical predictors of depression included fatigue, pain and disability. In addition passive coping, a perceived lack of control over pain and a perception that medications were unimportant, ineffective, or of concern (given side-effects) were also independently predictive of depression. Nagyova, Stewart, Macejova, van Dijk & van den Heuvel (2005) investigated the relationship between self-esteem, adjustment to disease, pain and psychological well-being in 160 patients recently diagnosed with rheumatoid arthritis over a 4 year period. The authors found that pain explained 36% of the variance in measures of psychological well being whereas self-esteem and pain explained 52% of the variance while adjustment explained 42% of the variance in measures of psychological well-being. Higher levels of pain were also associated with higher anxiety and depression, as well as decreases in self-esteem and adjustment. Self-esteem and adjustment were identified as important mediators between pain and psychological well-being, with the former variables particularly important with disease progression. This finding was consistent with longitudinal research (over a four-year time span) by Smith and Wallston (1992) who found a reciprocal and ?vicious? (p. 151) link between helplessness and passive coping that contributed to deceased function and psychosocial impairment, which decreased perceived competence and emotional support, reduced life satisfaction, lowered perceptions of health and contributed towards increased depression and pain. Likewise, Covic, Adamson, Spencer and Howe (2003) found an inter-37 relationship between coping, depression and pain, with helplessness and passive coping identified as mediators of future pain and depression, accounting for 29-43% of the variance in pain and 21-33% of the variance in depression over a 12 month period. Research findings by Katz and Yalin (2001) underlined the significance of the meaning of psychosocial impairment in the etiology of depression. The authors found that, for those with greater functional disability, the onset of depression was linked to the inability to engage in valued life activities, particularly those that were recreational and social in nature (Katz & Yalin, 2001). Likewise, Neugebauer, Katz and Pasch (2003) found that poorer functional status, greater disability in valued activities and unfavorable social comparisons all predicted low satisfaction with abilities, which was, in turn the most significant predictor of depression. According to Revenson?s (1993) research review, social support has been found to be beneficial for those with rheumatoid arthritis in regards to measures of self-esteem, adjustment, life satisfaction or coping. Findings by Fitzpatrick, Newman, Lamb and Shipley (1988) suggested that satisfaction with support, whether within close or more diffuse relationships, was more important to psychological well-being than the availability of support. For example, Manne and Zautra (1989) found that a supportive spouse had a beneficial effect on psychological well-being, given that patients engaged in more problem-focused coping, whereas as a critical spouse had a detrimental effect, with partners leaning towards emotionally-focused coping, such as wishful thinking. However, Fitzpatrick et al. (1988) also found that a more extensive social network was associated with higher self-esteem and lower depression, irregardless of the severity of disease and disability. 38 Research investigating the effectiveness of various cognitive-behavioural programs for those with rheumatoid arthritis appears ambiguous in findings. A meta-analysis of 31 randomized controlled studies investigating patient education interventions reported that significant effect sizes were obtained at first follow-up for disability, joint count, patient global health assessment, psychological status and depression (with no significant effects found for anxiety, pain and disease activity), although benefits were not maintained at follow-up (Reimsma, Kirwan, Taal & Rasker, 2004). Parker et al. (1995) also investigated the effectiveness of stress-management programs for arthritis patients, with significant improvements reported in measures of helplessness, self-efficacy, coping and health status (as in improved lower extremity function) that persisted to 15 months follow up. However, research findings were less clear for pain, with no difference reported between the treatment and control groups at 3 months follow-up, with marginally significant results reported at 15 months follow-up. In addition, there were no significant long term effects on measures of anxiety, depression or daily stress, a finding that was partly attributed to low baseline scores (Parker et al., 1995). Astin, Beckner, Soeken, Hochberg and Berman (2002) investigated the effectiveness of relaxation, biofeedback and cognitive behavioural therapy through a meta-analysis of 25 controlled studies. While significant postintervention effect sizes were found for pain, disability, psychological status, coping and self-efficacy, at approximately 8.5 months follow-up, effect sizes were nonsignificant for pain and functional disability (although persistently significant for tender joints, psychological status and coping). No significant differences were found in the efficacy of various treatments. The authors remarked on the 39 low treatment effect sizes for patients with longer disease duration, speculating that psychological interventions were less appropriate for this population (Astin et al., 2002). Likewise, other researchers have questioned the appropriateness of various cognitive-behavioural strategies for those with a more severe disease process (Affleck, Tennen, Pfeiffer & Fifield, 1987; Affleck, Urrows, Tennen & Higgins, 1992; Erdal & Zautra, 1995; Treharne et al., 2005). For example, Affleck et al. (1987) reported that perceptions of control over daily symptoms were associated with less mood disturbance for those with moderate or severe symptoms. However, a perception of control over disease course was associated with a greater mood disturbance for those with a more severe disease, but not for those with a mild disease. Affleck et al. (1992) also found that distraction and emotional support were associated with a more positive mood for low pain, whereas the reverse was found for high levels of pain. Schiaffino, Revenson and Gibofsky (1991) found that greater self-efficacy beliefs were linked to greater depression for those with severe pain in spite of the psychological benefits found for those with less pain. However, Gatchel et al. (2007) has stressed the possible risks in acceptance based approaches for those with chronic pain, noting that ?to simply give up or give in would appear to be a certain route to depression? (p. 604). Research has not determined whether or not acceptance and the relinquishment of behavioral control may be psychologically adaptive for those with rheumatoid arthritis (Zautra & Manne, 1992). This research frontier is particularly relevant for those with established arthritis, given that pain is a significant stressor (Melanson & Downe-Wamboldt, 2003; Minnock, FitzGerald & Bresnihan, 2003) that exists alongside the challenges of coping with physical limitations and the associated maintenance of independence (Melanson & Downe-Wamboldt, 2003). According to research 40 by Erdal and Zautra (1995), those with chronic arthritis (type unspecified) experienced the greatest psychological distress, pain and least reported psychological well-being in comparison to three other conditions (chronic vision problems, new vision problems and new arthritis problems), when confronted with the physical and psychological effects of an illness downturn. Contrary to expectations, previous experience with coping had not psychologically prepared individuals to weather the storm, but rather added a burden to existent suffering (Erdal & Zautra, 1995). Recent recommendations for the inclusion of the stress regulatory system in biopsychosocial models of pain (Gatchel et al., 2007) and adaptation to rheumatoid arthritis (Walker et al., 2004) has underlined the environment and socio-cultural context as particularly salient issues in understanding rheumatoid arthritis as an autoimmune disorder. However, understanding the impact of stress on disease activity remains elusive, given that major stress, such as the death of a spouse, may have a suppressant effect, while interpersonal stressors, such as conflict, may trigger an exacerbation given different effects with the stress regulatory system. (Potter & Zautra, 1997; Walker, Littlejohn, McMurray & Cutolo, 1999; Zautra et al., 1989). Likewise, research investigating the role of stress in relation to disease onset remains inconclusive (Brady, 1998; Stewart, Knight, Palmer & Highton, 1994; Walker et al., 1999). However, extensive research has documented the adverse effect of minor life stressors (Potter & Zautra, 1997; Zautra et al., 1994; Zautra et al., 1989) and interpersonal stressors, in particular (Zautra et al., 1994; Zautra et al., 1998; Zautra et al., 1997) as evidenced through heightened markers of immune response and disease activity. For example, Zautra et al. (1994) investigated the relationship between minor desirable and 41 undesirable events, interpersonal stress, coping style, depression, subjective and objective ratings of disease activity as well as blood markers of immunostimulatory activity for 33 women with rheumatoid arthritis and 37 women with osteoarthritis. While both groups were similar on numerous baseline measurements (i.e., pain, stressful events, positive life events, clinician ratings of disease activity and depression), findings suggested that those with rheumatoid arthritis were more physiologically and psychologically reactive to interpersonal stress than those with osteoarthritis. For example, interpersonal conflict was significantly associated with increased measures of depression, immunostimulatory activity and clinician assessments of disease activity for those with rheumatoid arthritis, but not for those with osteoarthritis. In addition, those with rheumatoid arthritis with higher scores on depression and those who rated their coping as ineffective showed higher levels of immunostimulatory activity. Zautra and Smith (2001) subsequently investigated the relationship between depression and weekly measures of interpersonal stress, pain and negative affect for older women with rheumatoid arthritis (n= 87) and osteoarthritis (n= 101) over a minimum 12 week period. While both groups reported greater pain during weeks of interpersonal stress, depression had a more significant influence on the relationship between interpersonal stress and pain for those with rheumatoid arthritis. In addition, interpersonal positive events had a buffering effect between perceived stress and pain for those with rheumatoid arthritis but not for those with osteoarthritis. Zautra et al. (1997) investigated the relationship between interpersonal stress, disease activity (based on self-report and clinical ratings) and blood markers of immune activity over a 12 week period for 41 women with rheumatoid arthritis. Blood markers of immune activity 42 as well as objective and subjective appraisals of disease activity were taken during times of high interpersonal stress. An increased number of interpersonal stressors in a week were associated with increases in joint tenderness and pain as well as blood markers of disease activity. Zautra et al. (1998) subsequently reported that women with a critical spouse had significant increases in blood markers of immunostimulatory and disease activity in response to interpersonal stress while a strong spousal relationship had a buffering effect. In particular, interactions with highly supportive spouses buffered the increased levels of anxiety and depression associated with interpersonal stress whereas interactions with emotionally or physically affectionate spouses buffered blood markers of disease activity following interpersonal stress. Affleck, Tennen, Urrows and Higgins (1994) also used a prospective daily research design to investigate the relationship between stress (undesirable daily events), disease activity and mood for 74 individuals with rheumatoid arthritis over a 75 day recording period. A significant relationship was found between same-day mood and stressful events, with a positive relationship reported between stress and same-day and next day-pain for those with a more active disease process, with the latter also reporting more pain and negative mood in general. In addition, those individuals with higher levels of social support had less emotional distress after undesirable life events, in contrast to those with low levels of social support. Based on the assumption that emotional inhibition has an adverse effect on the immune system, researchers have also explored the benefits of expressing negative emotions. Kelley, Lumley and Leisen (1997) randomly assigned 72 rheumatoid arthritis patients to either a control group, or a disclosure group, with the former group instructed to describe a 43 landscape picture and the latter group instructed to recount a very distressing experience for 15 minutes per day over a four- day period. While no significant differences were found between groups at two weeks post intervention, at three months post intervention, the disclosure group reported less affective disturbance and better physical functioning in comparison to the control group, with no significant differences reported for either pain or disease activity. Likewise, Smyth, Stone, Hurewitz and Kaell (1999), investigated the effect of emotional disclosure for a group of asthma patients and a group of rheumatoid arthritis patients, with random assignment into a disclosure group (with instructions to write about their most stressful experience) and a control group (with instructions to write of an emotionally neutral topic). While significant improvements in lung function were reported for the asthma disclosure group (in contrast to the asthma control group), at 2 weeks, 8 weeks and 16 weeks post intervention, the rheumatoid arthritis disclosure group (in contrast with the rheumatoid arthritis control group) had significant reductions in ratings of overall disease activity at 16 weeks post intervention, but not prior. Summary of Biopsychosocial Discourse Psychological discourses associated with the etiology and treatments of rheumatoid arthritis have shifted over time, based on the philosophical premises that are situated within specific historical contexts. The theory of psychogenesis, and related psychodynamic treatments (Lerman, 1987; Shafii, 1973; Spergel et al., 1978, Stuart, 1953) has been replaced by the biopsychosocial model (Gatchel et al., 2007; Walker et al., 2004), with treatments primarily cognitive-behavioural in nature. However, the biopsychosocial model, while intended to challenge medical bioreductionism (Engel, 1977), has been critiqued for the typical exploration of biological, psychological and social influences without holistic 44 considerations (Yardley, 1996). The recent theoretical acceptance of the reciprocal, rather than independent, relationship between emotions and pain (Gatchel et al., 2007; Keefe et al., 2001), suggested a shift towards greater holistic consideration. Likewise, recent recommendations for the inclusion of the stress regulatory system within the biopsychosocial model (Gatchel et al, 2007; Walker et al., 2004) has the potential to incorporate socio-cultural influences that have been otherwise marginalized. While researchers have questioned the effectiveness of various cognitive-behavioural strategies for those with a more severe disease process (Affleck et al., 1987; Affleck et al., 1992; Astin et al., 2002; Erdal & Zautra, 1995; Schiaffino et al., 1991; Treharne et al., 2005), alternative coping recommendations are lacking. Elderly women with a longstanding disease are particularly vulnerable to challenges to their psychological well-being, given the requirements of adaptation within ongoing physical deterioration, limitations and pain (Melanson & Downe-Wambold, 2003; Minnock et al., 2003) coupled with the reduced effectiveness of medical treatments over time (Anderson et al., 2000; Moreland et al., 2001). According to Walker et al. (2004), there is limited psychological research that has investigated the subjective experience of rheumatoid arthritis and the associated reconstruction of meaning within the illness experience. While physicians have been invited to empathetically enter the experiential world of chronic illness (Kleinman, 1988), such an invitation was ironically lacking in the psychological discourses reviewed. As such, the predominant psychological discourses situated the client as an individual to be fixed or educated, rather than empathetically supported and understood. The following excerpt from the autobiography of Grace Stuart (1953) underlined the contradictions and ambiguities implicit within attempts to psychologically comprehend affect 45 outside of the complexities of lived experience, observations that remain astute to the present day. But as to hospital psychology, I did just wonder what ?they? taught ?them?. It was a young student in his final year who made, on one small sheet, the record of my thirty-three years of disease! ?Are you worried about anything?? he asked me paternally, ?No,? said I, and the lie went down. Hadn?t ?they? told him that one would be bound to lie in answer to such a question, to which, in any case, in such circumstances, only a few minutes could have been devoted? That even a semi-mature person would and should only have discussed all the psychological and human implications of worsening disability with some very chosen, some very wise person? And that, even then, it would take a very long time. It needs no ?modern? psychoanalyst! If he had read his Shakespeare he would know that not in a moment is the stuff?d bosom cleansed of all that perilous stuff which weighs upon the heart. Had he known my worries?even then? Well, he would have had to know how ?real? these were; what objective case there was in my life for concern; and in what manner I, personally, reacted to ?real? anxiety. Or, if my ?worry? were subjective, and in no way connected the contemporary circumstances of my life, he would then have had to know if it were also a repetition of an anxiety situation to which I had always been prone, and with which I was emotionally incapable of coming to terms? And, further, whether this state of affairs maintained at, and before, the onset of the disease. Even then??What, after all, do we know yet of the exact relationship between endocrine and emotional disturbance, and which predates which, and how 46 they interact? Very little! Most of it is still to be learnt. But it has long been in my mind that if more thorough personal records had been kept we might have been on to the nature of the very complex disturbance, which is rheumatoid arthritis, a long time ago (p. 165). Subjectivity and Rheumatoid Arthritis While psychological research is lacking in regards to the subjective experience of rheumatoid arthritis, nursing and sociology scholars have made significant contributions towards the understanding of the chronic illness experience. Fair (2003), explored the disparate explanations of rheumatoid arthritis between 17 female patients (aged 26 to 40 years) and 5 health care providers. Themes identified by the women reflected physical and emotional suffering, interferences in daily life, and aggravations in receiving health care. In addition, the women described the ways in which rheumatoid arthritis had redefined them, both positively and negatively. In contrast, health care provider themes typically focused on efforts geared towards the maintenance of function and the control of the disease process. Patients described the provider-patient relationship as typically lacking in regards to partnership, education and support. Fair (2003) identified the implicit power imbalance with the provider-patient relationship as a dynamic that interfered with effective communication, also noting that disparate understandings adversely effected treatment outcomes. Iaquinta and Larrabee (2004) explored the experiences of 6 women with rheumatoid arthritis (ranging from 43 to 67 years of age; disease duration of 7 to 38 years), including questions regarding their experience with nurses and their role as comanagers of healthcare. The authors identified several research themes that encompassed experience, including that of grieving while growing, an essentially transcendent experience gained through the 47 experience of loss (Iaquinta & Larrabee, 2004). Participants described difficulties in receiving validation for symptoms, in part due to the invisibility of symptoms as well as efforts taken to socially mask illness. Participants were also reluctant to discuss their symptoms with others, given past unwanted reactions. Participants were unanimously described as cultivating resilience, primarily through perseverance, although negative feelings, such as anger, frustration, fear and depression were commonly experienced. In particular, fears were associated with the potential adverse effects of pharmaceuticals, the disease process in general, including future deformities and dependency, and difficulties in the maintenance of professional and personal roles. Participants also identified numerous dissatisfactions with medical care, including inadequacies in appointment duration, education provided and treatment focus, as well as difficulties with access during times of disease exacerbation, while also noting the relative absence of nurses in their health care. In general, participants were described as masterful in their management of symptoms and their lifestyle adaptations. Similar research themes were identified by Brown and Williams (1995) in the narratives of 7 women with rheumatoid arthritis including the process of help-seeking (and associated dissatisfactions with health care providers), a search for the meaning, in regards to the etiology of the disease, and the impact of symptom uncertainty within changing roles and dependency. Shaul (1995) explored the process of adaptation through the research narratives of 30 women with rheumatoid arthritis. The first stage of adaptation, defined as ?becoming aware,? was marked by initial symptom presentation and experiences associated with obtaining a diagnosis. Participants reported that initial symptoms were frequently misdiagnosed or minimized, with one participant referred to a psychiatrist as symptoms were 48 diagnosed as psychosomatic. The second stage, defined as ?learning to live with it,? was characterized by symptom management, including a reorganization of personal priorities and goals. According to Shaul (1995), symptoms universally reported included depression, stiffness, joint swelling, fatigue and pain, with the latter two symptoms most frequently associated with increased feelings of depression and despair. Participants reported that guidance, referral to restorative therapies and coordination of services was lacking within health care. This finding was consistent with research by Fair (2003), given that research participants frequently described a lack of coordination between health care providers. Shaul (1995) defined the final stage of adaptation as ?mastery,? or an ability to live with, rather than control, rheumatoid arthritis, a stage that was associated with a redefinition of normality and a reconstruction of identity. Likewise, Dildy (1996) investigated the process of suffering associated with rheumatoid arthritis within the experience of 14 participants, identifying a progressive movement through a disintegrated and shattered self to a reconstruction of self within the chronic illness experience. The first phase was marked by fears related to the loss of independence and self-sufficiency with the second phase characterized by severe pain, exhaustion, mental anguish, as well as extreme physical limitations and restrictions. The final phase was marked by a determination to overcome feelings of hopelessness (occasionally marked by suicidality) while working towards a state of acceptance and personal growth. Neill (2002) and Schmidt, Brauer, and Peden-McAlpine (2003) have likewise stressed the experience of rheumatoid arthritis as providing an opportunity for personal growth and positive transformation. 49 Plach, Stevens, and Moss (2004) investigated the experience of 20 women with rheumatoid arthritis (average age of 61 years and disease duration of 5 to 10+ years). Research themes identified within the category of corporeality, or ?being one?s body,? included that of relating to a noncompliant body, a body out of synch, and a private body made public. Participants described frustrations with noncompliant bodies, voicing feelings of humiliation when they were not able to perform intimate self-care, negatively evaluating their bodies against earlier expectations and those of their peers. In addition, participants described efforts directed towards hiding their pain, impairments and deformities from others, given that ?smiling through the discomfort and acting normal was the goal? (Plach et al., 2004, p. 145). Hand deformities were identified as particularly humiliating, given the impossibility of maintaining social privacy. The authors found that the reality of corporality permeated the experience associated with rheumatoid arthritis, including self-appraisals, disease-appraisals, as well as the coping strategies utilized (Plach et al., 2004). Melanson and Downe-Wamboldt (2003) interviewed 48 individuals (39 women; mean age, 75 years; mean disease duration of 18 years) in order to assess the illness-related stressors that were particular to the elderly with established disease. The predominant illness-related stressors explored included physical limitations, lack of control or difficulties maintaining independence, and pain. While coping strategies were context driven, the predominant strategy utilized was confrontative or problem-focused in nature. Very few participants described any sense of benefit gained from stressors associated with rheumatoid arthritis, with emotional responses to illness-related stressors primarily negative. These findings were consistent with research by Minnock, FitzGerald and Breshnihan (2003), who reported that pain was the predominant impairment to health for those with an established 50 disease (mean disease duration of 14 years), albeit in a younger age bracket (mean age, 50.5 years), with 52% of respondents rating their health status as fair, poor or very poor in comparison to their peers, with the majority anticipating continued deterioration. Hewlett et al. (2005) interviewed 15 rheumatoid arthritis patients in the United Kingdom as to their experience of fatigue, a predominant somatic symptom frequently referenced by other researchers (Dildy, 1996; Plach et al., 2004; Shaul 1995). Two types of fatigue were identified, that of a severe intrusive weariness and that of sudden and overwhelming fatigue, symptoms that had physical, emotional and cognitive components, with consequences that permeated every aspect of life. Participant?s efforts at self-management were limited in their effectiveness with professional assistance rare. The primary reliance on perseverance as a coping strategy was attributed to the participant?s Anglo-Saxon background. Edwards, Mulherin, Ryan and Jester (2001) investigated the inpatient hospital experiences of 9 women with rheumatoid arthritis with a disease duration ranging from 3 to 42 years. Five research themes were identified, including the experience of uncertainty associated with the first admission to hospital, the process of becoming an experienced patient, the positive and negative effect of other patients, experiences with staff and the impact of loss of privacy. While the first hospital admission was marked by feeling of loss of control, experienced patients described a sense of comfort during hospitalization. Younger participants, in particular, described contact with elderly patients as distressing, given their exposure to the physical effects of an established disease process. Younger participants also found the lack of privacy as degrading, referencing the reinforcement of a negative body image. 51 Numerous sociologists (Bury, 1982, 1988; Charmaz, 1983, 1995; Corbin & Strauss, 1987; Williams, 1984) have also explored the experience of chronic illnesses using narrative means to explicate the process of meaning reconstruction. Using the research narratives of 30 individuals with rheumatoid arthritis, Williams (1984) explored the process of narrative-reconstruction focusing on the influence of biomedical and lay etiological beliefs. Three research narratives were presented in depth, a process which underlined the uniqueness of situated meaning in the reconstruction process. For example Bill viewed the etiology of his illness as due to toxicity and exploitation within the workplace; and Gill viewed her illness as stress-induced, both within the context of the suppression of her needs as a woman and as related to devastating loss within the context of her roles whereas Betty did not voice any beliefs in etiology, positioning her experience within the transcendence of God?s purposes. Pinder (1995) investigated the work-related experiences of 25 chronically ill individuals (11 with rheumatoid arthritis), in order to explore the intricacies of the challenges and dilemmas that exist within the intersection of self, body and the work environment. One participant, Elaine, a woman with rheumatoid arthritis, was abruptly forced out of the workforce when her boss was unwilling to accommodate her needs. Sally, a woman with psoriatic arthritis, in spite of moderate disability, was able to maintain employment with relatively minor disruption given the understanding and support offered by her supervisor. Charmaz (1983) identified the loss of self as a fundamental form of suffering within the chronic illness experience, particularly for those who were seriously debilitated or housebound. Based on interviews of 57 chronically ill individuals, four interrelated sources of suffering were analyzed including the experience of living a restricted life, the experience of social isolation and social discreditation, or devaluation, as well as the experience of 52 becoming a burden to others. Charmaz (19983) poignantly singled out the experience of a young woman with rheumatoid arthritis who was the target for bullying by school age children, a vulnerability that was attributed to her small stature and laboured gait. Charmaz (1995) described the final stage of adaptation to loss and physical impairment as one of ultimate surrender, a relinquishment of control over the chronic illness experience that was replete with spiritual overtones. According to Charmaz (1995), ??surrendering to the sick body strips the journey of routine distractions and obstacles, conditions exist for ill persons to experience self anew and to continue the odyssey with renewed clarity and purpose. In this sense then, adapting to impairment fosters redemption and transcendence of self? (p. 675). Likewise, Frank (1995) highlighted the moral nature of suffering in the description of the three core illness narratives (i.e., restitution, chaos and quest narratives) that follow the ?narrative wreckage? of chronic illness. According to Frank (1995), the recounting of one?s story is essential to the reconstruction of meaning, with others under moral imperative to provide a witness to these accounts. For Frank (1995), embodiment was central to re-narration, given that, ?the body sets in motion the need for new stories when its disease disrupts the old stories. The body, whether still diseased or recovered, is simultaneously cause, topic, and instrument of whatever new stories are told? (p. 2). While the restitution narrative was defined by a return to the former self, the quest narrative bore witness to personal heroism within the search for meaning and personal change. Frank (1995) underlined the chaos narrative as marked by ongoing chaos and a lack of narrative coherence in regards to the past, present and future. According to Frank (1995), such embodied 53 accounts require empathetic witnessing, consistent with Scarry?s (1983) observation of the need for witness and advocacy for those disempowered by severe pain. Bury (1982), using the research narratives of 30 individuals with rheumatoid arthritis, also described the chronic illness experience as a process of biographical disruption. According to Bury (1982), disruption occurred in three ways, through the effects of the physical illness, within the self-concept and explanatory systems of biographies and in the disruption incurred by the mobilization of resources. Bury (1988) subsequently described the pragmatic meaning of rheumatoid arthritis as having two aspects: one, the consequences of the illness for the individual and, secondly, the cultural connotations or significance of the illness that infuses the social context. Within the family system, in particular, the legitimacy of the illness and the negotiation of support are fraught with ambiguity, with the meaning of the illness emerging over time (Bury, 1988). According to Bury (1988), ?the sufferer and ?significant others? are pitched into a situation of considerable insecurity where past, present and future meanings, are placed ?at risk?. Images of self, of others and the disease are tested against the constraints of practical social life and of the expectations governing behaviour in the wider culture? (p. 113). Anxiety stems ?not so much from the individual?s personality or intelligence, or the ?coping skills? they have at their disposal, but from the clash between loss of confidence in the body and the implications this has for maintaining culturally ordered meanings? (p. 113). Additional social ambiguities exist for those with rheumatoid arthritis, given a disease process that may be inconsistent and unpredictable, leaving the requirements of treatment and support in a state of flux (Revenson, 1993). Sociologists Corbin and Strauss (1987) likewise situated the process of biographic disruption and reconstruction associated with the experience of chronic illness (cancer, 54 cardiovascular disease and spinal cord injury) within the reciprocal interactions of self concept (identity), biographical time (past, present and future) and the body. According to Corbin and Strauss (1987), the body is the medium through which self concept is formed, the conduit of communication, an object as evaluated by others and the vehicle for performance. Corbin and Strauss (1987) described biographical reconstruction as precipitated by body failure, given the need to accommodate changes within the present and future. In the process of adaptation, ?embracing the future,? and the associated acceptance of present circumstances remained predicated on hope, as ?without hope there is no incentive? (p. 271). According to Corbin and Strauss (1987), acceptance does not imply happiness but rather ?a way of biographically accommodating to an illness through altered or changed performances, and in doing so to give meaning to life despite ongoing and progressive body failure? (p. 271). Occasionally, acceptance shifts to transcendence, in that the body is ?overcome,? (p. 271) and personal meaning enhanced (Corbin & Strauss, 1987). However, a persistent downward illness trajectory was found to shatter narrative coherence and associated adaptation, with the impact feeding despair and the potential for suicide (Corbin & Strauss, 1987). The theoretical importance of embodiment within the process of meaning reconstruction was similarly reflected in the research findings of Dildy (1996) and Charmaz (1983). Dildy (1996) identified lack of pain control as constraining positive (or transformative) meaning-making within the experience of suffering associated with rheumatoid arthritis. Likewise, Charmaz (1983) identified the need for physical improvement with stabilization prior to any benefit finding within the experience of a debilitating chronic illness, such as rheumatoid arthritis. 55 Summary of Subjectivity and Rheumatoid Arthritis Research investigating the lived experience of rheumatoid arthritis has reflected themes of loss, endurance, accommodation and transcendence. Sociologists (Bury, 1982; 1988; Charmaz, 1983; 1995; Corbin & Strauss, 1987; Williams, 1984) and nursing scholars (Iaquinta & Larrabee, 2004; Plach et al., 2004; Shaul, 1995) alike, position identity reconstruction and subjectivity (as part of the chronic illness experience) within the intersection of the self, body and socio-cultural context. In this regard, researchers identified embodiment, either explicitly or implicitly, as an essential influence within the chronic illness experience (Bury, 1982; 1988; Charmaz, 1983; 1995; Corbin & Strauss, 1987; Dildy, 1996; Frank 1995; Iaquinta & Larrabee, 2004; Plach et al., 2004; Shaul, 1995) with the need for physical stabilization frequently accentuated as a precondition for constructive meaning-making (Charmaz, 1983; Corbin & Strauss, 1987; Dildy; 1996; Frank, 1995). SUICIDE DISCOURSE AND RHEUMATOID ARTHRITIS Historical Overview of Suicide Discourse Ancient Greco-Roman thought was philosophically permissive towards suicide, even glorifying suicide as a willful act of heroism when the preservation of honour was at stake (van Hooff, 2000). In a case study review of 89 ancient suicides, Siedal (1995) found that suicide was associated with old age, pain, illness, military catastrophe, political conflict, madness, mental decline as well as grief, depression and anxiety. According to a historical analysis by van Hooff (2000), St. Augustine (342-430) established the doctrine of self-killing as a mortal sin, an act that was subsequently criminalized during the 14th century. Van Hooff (2000) traced the development of a more tolerant view to the Reformation and Renaissance (16th -17th century), partly in response to 56 the reinterpretation of biblical texts given that self-killing was reframed as potentially holy, as with the martyrs and the crucifixion (van Hooff, 2000). According to van Hooff (2000), by the 19th century, self-killing was associated with mental suffering, philosophically shifting suicide from the religious to the scientific realm. Present Suicide Discourse Present cultural discourses regarding the morality of suicide center on whether or not the act may be regarded as rational, particularly as a response to unremitting suffering (Kleepsies, Hughes & Gallacher, 2000; Maris, Berman & Silverman, 2000), a discourse that mirrors early Greco-Roman thought (van Hooff, 2000; Siedel; 1995). Suicide, as a rational option for the elderly, has gained widespread acceptance within western cultures (Humphry, 1991; Kleepsies et al., 2000; Rosenfeld, 2004), with societal endorsement extending to more global issues, such as incapacitation, deteriorating health, limited resources and being a burden to others (Sorenson, 1991). According to Kleepsies et al. (2000), such acceptance reflects a desire to exert control over the dying process, given the increased mortality from chronic, rather than acute illness, and the availability of technology that may extend life beyond a meaningful existence. The acceptance of rational suicide extends to psychologists, with 88% of psychotherapists endorsing suicide as potentially rational for situations involving terminal illness and physical pain as well as, psychological pain (such as severe intractable psychosis and depression), physical deterioration, mental debilitation (such as with Alzheimer?s or Huntington?s chorea), a poor quality of life (such as the completion of a life?s work) and hopeless nonmedical conditions, such as a catastrophe (Werth & Corbin, 1995). According to a survey of registered social workers in British Columbia, Canada, 75.9% of respondents 57 thought that voluntary euthanasia should be legalized, with 78.2% similarly endorsing physician-assisted suicide (Ogden & Young, 1998). Conwell, Duberstein and Caine (2002) predicted that suicide amongst the elderly will be increasingly relevant given the aging of a post-World War II cohort group marked by higher suicide rates than preceding or subsequent generations. According to the World Health Organization (2002), suicide rates in Canada peaked in the 45-54 age groups per 100,000 for both sexes (28.0 for men; 7.7 for women). There was a gradual decline for men until age 75+, whereupon rates increased to 23.7 per 100,000. Women experienced a more marked decline in the 65-74 age groups, to 3.4 per 100,000, and continued to decline in the 75+ age group to 2.7 per 100,000. In contrast, suicide rates for the United States of America showed a similar peak for both sexes in the 45-54 age group, with a gradual decline for women, but a marked increase for men in the 75+ age group (at 40.7 per 100,000). In spite of differences in the magnitude of elderly suicide rates between the United States and Canada, these findings suggest that elderly suicide, particularly in the 75+ age group, is a significant later-life mental health issue, particularly for men. Increasing age, gender (male), ethnicity (Caucasian) and marital status (unmarried) have been associated with an increased risk for suicide (Pearson, 2000). In general, elder suicides have more depressive illness, less psychotic disorders and less substance abuse as compared to younger suicides (Conwell & Brent, 1995). The stressful life circumstances which precede elder suicide also vary with younger suicides in that they are more related to physical illness and loss rather than relationship, financial or legal difficulties (Conwell, 1997). Goldblatt (2000) identified numerous characteristics of physical illness that may 58 create a predisposition to suicide including chronicity, debilitation, unremitting pain, forced dependence and cognitive impairment. However, the exact relationship between the burden of physical illness, depression, and suicide remains elusive. While physical illness and functional impairment have been identified as risk factors for elderly suicide, research has suggested that the presence of an affective disorder (typically the first episode of a unipolar depression) mediates this relationship (Conwell & Brent, 1995; Conwell , Duberstein & Caine, 2002). In a case-controlled study of elderly suicides in primary medical care (Conwell et al., 2000), completed suicides were found to have more depressive illness, greater physical burden and functional limitations than age-matched controls although physical health measures and overall function did not distinguish between groups once mood disorders were controlled for. According to Conwell (1997) 62% of elderly patients had seen a primary care physician in the 30 days prior to suicide with an average 36% having seen a primary care physician within the prior 7 days. Likewise, Luoma, Martin and Pearson (2002) found that 58% of older adults (age 55 and older) had contact with a primary care provider within a month of suicide, while 11% had contact with a mental health professional in contrast to younger adults (aged 35 and younger) with contact rates of 23% and 15% respectively. In general, crisis intervention with the suicidal elderly is more difficult than with younger individuals in that they are more determined to commit suicide, take steps to avoid detection and also use more violent means (Conwell et al., 2002). According to Leenaars (2003), elderly suicide notes differ from younger suicides in that they are less ambivalent, less suggestive of redirected aggression and more direct regarding reasons for suicide. In contrasting the elderly suicide notes of the terminally ill 59 with the nonterminally ill, Leenaars (2003) found that both contained psychological pain, cognitive constriction and unresolved life difficulties, yet the former notes made specific reference to their illness as the primary motivating factor. Using the physician-assisted suicide of Freud as an exemplar, Leenaars (2003) suggested that such suicide be more appropriately described as a ?dignified death,? ?assisted death,? or a ?self-chosen death? (p.10). Research has repeatedly found hopelessness (defined as a cognitive distortion marked by negative future expectancies) to be highly correlated with suicidal ideation and predictive of eventual suicide in psychiatric adult populations (Beck, Brown & Steer, 1989; Beck, Kovacs & Weissman, 1975; Beck, Steer, Beck & Newman, 1993; Beck, Steer, Kovacs & Garrison, 1985). In this regard, hopelessness, rather than the severity of depression, was found to be predictive of eventual suicide for those previously hospitalized with suicidal ideation (Beck et al., 1985). Likewise, Beck et al. (1993) found that hopelessness was 1.3 times more effective than depression in predicting suicidal ideation in hospitalized patients diagnosed with or without a mood disorder. Beck et al. (1975) also suggested that hopelessness was the mediating variable between depression and suicide, also providing an explanation for those suicides that occurred without evident depression. However, the role of hopelessness has not been clearly demonstrated in research investigating elderly suicides (Pearson, 2000). For example, hopeless, as measured by the Geriatric Hopelessness Scale, was found to be significantly correlated with depression and behavioral measures of cooperation and social contact but not suicidal behavior or ideation for a group of inpatients in an acute psychogeriatric unit (Trenteseau, Hyer, Verenes & Warsaw, 1989). Hill, Gallagher, Thompson, and Ishida (1988) found that health status, 60 depression and hopelessness were all predictive of suicidal ideation in a group of elderly psychiatric outpatients, with depression, rather than hopelessness, contributing the greatest percentage of predictive variance. Other studies have found a central role for hopelessness as a predictor of elderly suicidal ideation and completed suicide. Rifai, George, Stack, Mann and Reynolds (1994) found that hopelessness was significantly associated with a previous suicide attempt in a group of elderly psychiatric outpatients with a major recurrent depression, with a high degree of hopelessness persisting following the treatment and remission of depression. In a study of traumatic deaths within a retirement community, Ross et al. (1990) found that marital status (widowed or divorced), hypersomnia, excessive alcohol use and a poor mental outlook were all significantly predictive of suicide. The two mental status questions most highly predictive of suicide included ?not feeling hopeful about the future,? and ?not feeling useful and needed? (Ross et al., 1990). The authors also reported that, of the 5 chronic illnesses identified, including diabetes, myocardial infarction, stroke and cancer, only rheumatoid arthritis was significantly predictive of accidental death (Ross et al., 1990). Research has also linked hopelessness and suicidal ideation for elderly patients with a terminal chronic illness. Chochinov, Wilson, Enns and Lander (1998) found that hopelessness (defined as a lack of purpose), while significantly correlated with depression, was independently the most predictive of suicidal ideation for palliative inpatients (average age 71 years) with advanced cancer. Research investigating attitudes and requests for euthanasia (or hastened death through direct physician intervention) and physician-assisted suicide (or suicide through indirect physician intervention), also underlined the relationship between suicide, depression, 61 hopelessness and debilitating chronic illness in the elderly. Wilson et al., (2000) reported that 73% of palliative cancer patients (average age 64.5 years) associated with two Canadian oncology wards, were in support of euthanasia or physician-assisted suicide. Reasons provided for such endorsement included the right to choose (43%); pain (43%); diminished quality of life (35%), suffering (24%); hopeless situation (24%); mental symptoms (18%); burden for others (14%); physical symptoms (other than pain) (10%); and knowledge of others? end-of-life experiences (8%). Amongst participants, 8 (12%) also said that they would have requested a hastened death if such actions had been legal at the time of the interview. Such individuals differed significantly from those with no such desire on numerous measures, including the severity of physical symptoms, as in drowsiness and weakness, rather than pain severity, loss of interest or pleasure in activities, hopelessness, loss of control and desire for death, as well as a higher incidence of depressive disorders although methodological inconsistency was reported in the latter finding. While 7 of these 8 patients died within 4 months, one patient medically improved and lived for a further 20 months. According to a Canadian National Palliative Care Survey of 379 palliative care patients, 62.8% believed that euthanasia or physician-assisted suicide should be legalized; with 39.8% indicating that they would contemplate such actions in the future, if legalized (Wilson et al., 2007). In addition, 5.8% of patients indicated that they would choose such actions if legal (at the time of the survey), with the top 5 symptoms and concerns reported including weakness (86.4%); a desire for death (81.8%); general malaise (68.2%); drowsiness (59.1%) and being a burden to others (59.1%). The desire for a hastened death was associated with lower religiosity, reduced functional status, a diagnosis of depression as 62 well as a greater number of symptoms and psychosocial concerns in comparison to participants who did not report such desire. In addition, those who expressed a desire for a hastened death reported significantly more hopelessness (27.3% versus 10.1%) in contrast to other participants. Nine and a half percent of participants also said that they would have requested euthanasia or physician-assisted suicide in the past, if legal, but that they had changed their mind given the resolution of physical and psychological concerns (Wilson et al., 2007). Ganzini et al. (2000) investigated requests for physician-assisted suicide in Oregon, USA, based on a questionnaire mailed to physicians who were legally capable of providing lethal medications through the Oregon Die With Dignity Act. Of 165 patient requests (average age 65 years), 20% were diagnosed as having depressive symptoms and subsequently refused suicide assistance. The top five conditions or values associated with requests included the loss of independence (57%); a poor quality of life (55%); a readiness to die (54%); a desire to control the circumstances of death (53 %) and the perception that continued existence was pointless (47%). Financial burden or lack of social support was identified by only 11% and 6% respectively. Physical symptoms, whether present or anticipated, that were relevant to requests included pain (43%), fatigue (31%), dyspnea (27%), confusion or unconsciousness (22%), incontinence (19%) and nausea (8%). However, 46% of patients who received substantial medical interventions, such as symptom management, referral to a hospice program, or a prescription for anxiety and depression, retracted their request for assisted suicide in contrast with 15% of those who received no such intervention (Ganzini et al., 2000). 63 Back, Wallace, Starks and Pearlman (1996) also investigated patient requests for physician-assisted suicide and euthanasia in Washington State, USA, a state where such practices were illegal. As with the study by Ganzini et al. (2000), physicians identified the predominant concerns precipitating requests as value-driven, rather than symptomatic in nature. In this regard, the top five concerns included future loss of control (77%); being a burden (75%); being dependent on others for physical care (74%); loss of dignity (72%) and being restricted to bed greater than 50% of the time (57%). In contrast to the study by Ganzini et al. (2000), 55% of patients were perceived as having severe depression or a depressed mood. In regards to physical symptoms, 50% of patients had severe physical discomfort with 35% experiencing severe pain. Consistent with the study by Ganzini et al. (2000), financial concerns were less important than others, with 23% of patients worried about the cost of medical care. While physicians frequently responded to requests with medical interventions aimed at symptom management, 24% of patients requesting physician-assisted suicide were provided with prescriptions while 24% of those who requested euthanasia received a lethal injection. Physicians rarely (15%) sought a second opinion from colleagues, which was attributed to fears of legal repercussions for the medical interventions provided. Suicide and Rheumatoid Arthritis There are a limited number of studies that have explored the relationship between rheumatoid arthritis and suicide. According to a study by Pokorny (1960), of the 44 known patients associated with a Veterans Hospital who committed suicide, 6 had bone or joint disease (predominantly arthritis) as compared to 2 ex-patients within the control group. Dorpat, Anderson and Ripley (1968) examined the medical records of 80 suicides and 64 identified 70% with a physical illness, with 51% of these illnesses identified as a contributing factor. A high prevalence rate was found for rheumatoid arthritis in contrast to the general population (15% versus 2-3%), with years of pain, progressive disability and isolation noted in the majority of individuals. In a more recent study, Treharne, Lyon and Kitas (2000) found that almost 11% of hospital outpatients with rheumatoid arthritis reported suicidal ideation. Longer disease duration (over 4 years), as compared to shorter duration (less than 2 years) was associated with such ideation (12% versus 7%), with females reporting greater suicidal ideation as compared with males (14% versus 3%). Depression was the most significant factor, with 30% of depressed patients reporting suicidal ideation in comparison to 7% of those who were not depressed. Timonen et al. (2003) investigated the demographic and psychosocial profiles of patients with rheumatoid arthritis who committed suicide within a 13-year period (1988-2000) in the northern Finnish province of Oulu. The total suicide population consisted of 1296 men and 289 women, with 19 (9 males and 10 females) diagnosed with rheumatoid arthritis. Suicides within the rheumatoid arthritis group were compared against two control groups consisting of suicide victims with osteoarthritis (OA) and those with neither osteoarthritis (OA) nor rheumatoid arthritis (RA). The authors reported that females in the RA group were significantly overrepresented when compared to females in the neither RA nor OA group (52.6% versus 17.3%) but not when compared to the OA group (32.7%). Significant age differences were also reported for females in the RA group when compared to females in the neither OA nor RA group (median age of 65.5 years versus 45.5 years) but not when compared to the OA group. A significantly higher proportion of females in the RA 65 group had been hospital-treated for depression (80%) as compared with females in the OA control group (31.1%) and females in the neither OA nor RA control group (56.3%). When information from death certificates was added to data from the hospital discharge registry, 90% of females in the RA group were found to have had a comorbid depressive disorder. In addition, 50% females in the RA group had made at least one prior suicide attempt as compared with 11% of the males in the RA group. A significant number of females in the RA group chose a violent suicide method (90%) as compared with females in the OA control group (35.5%) and the neither OA nor RA control group (56.3%). Males in the RA group significantly differed from females in the RA group in hospital treated depression (11.1% versus 80%) and disease duration (median 3.2 years versus 14.9 years). In addition, the number of hospital admissions for the treatment of rheumatoid arthritis was lower for males in comparison to females (median number of 1 versus 6). Alcohol use was also a contributing factor in the suicides of 44.4% of males in the RA group in contrast to 10% of females in the RA group. 100% of males in the RA group chose a violent suicide method as compared with 66.7% of males in the OA group and 77% of the males in the neither RA nor OA group. The relevance of euthanasia, intractable pain and rheumatoid arthritis has been poignantly documented by Wall and Malzack (1994) in the following account. In 1992, a British rheumatologist was found guilty and given a suspended sentence for injecting a patient with a lethal dose of potassium chloride. The 71-year-old patient had been in the rheumatologist?s care for many years with rheumatic heart disease, widespread progressive rheumatoid arthritis and, eventually, collapsed vertebrae and infection. She legally requested a with-drawl of all therapy except for pain control. Within a few days, she was rapidly deteriorating and was clearly soon 66 to die but intravenous narcotics were failing to control her pain. On the urging of the patient and her two sons, the doctor terminated this shambles (p. 2). Summary of Suicide and Rheumatoid Arthritis Cultural attitudes towards suicide have shifted over time, depending on the philosophical lens employed (van Hooff, 2000). At present, attitudes have shifted towards the permissive acceptance of suicide as a rational choice, particularly in the presence of unremitting suffering (Kleepsies et al., 2000; Maris et al., 2000). While research has identified depression as the mediating factor between physical illness and suicide (Conwell & Brent, 1995; Conwell et al., 2000), research investigating attitudes and requests for physician-assisted suicide and euthanasia by the seriously chronically ill has suggested that hopelessness has a significant influence in the desire for a hastened death (Chochinov et al., 1998; Ganzini et al., 2000; Wilson et al., 2007; Wilson et al., 2000) The finding that 46% patients withdraw requests for a hastened death following substantive medical intervention (Ganzini et al. 2000), signaled the importance of the physician?s role in fostering hope in the midst of suffering, as described by Groopman (2004). According to research by Timonen et al. (2003) women with rheumatoid arthritis who committed suicide were significantly over represented when compared with the total suicide population (52.6% versus 18.2%), with depression characteristic of the majority of these suicides. In contrast to the suicides of men with rheumatoid arthritis, women who committed suicide presumably carried a higher symptom burden, given a disease of longer duration and a greater number of hospital admissions for treatments associated with rheumatoid arthritis (Timonen et al. 2003). According to Harrison (2003), women generally experience more pain and disability than men, with the female gender and a longer disease duration also 67 marked by reduced treatment effectiveness (Anderson et al., 2000). However, the influence of hopelessness, as associated with depression or independently expressed, remains unexplored in the suicides of women with rheumatoid arthritis. 68 CHAPTER 3: METHODOLOGY This chapter will begin with a description of the chosen research methodology, critical discourse analysis, and the rationale for its use within the present research. The research design will then be described, including a description of the main research archive (the Medical Log), the role of researcher and the informants, the procedures for collecting the personal and socio-cultural background of the research subject (or diarist), the guiding principles used for textual analysis and discussion, and the criterion for measuring the worth of this study. Critical Discourse Analysis In general, discourse analysis belongs to two distinct traditions: that of discursive psychology and critical discourse analysis, the latter of which is informed by the writings of Michel Foucault. A succinct summary of differences is provided by Willig (2001) as follows: Discursive Psychology was inspired by ethnomethodology and conversation analysis and their interest in the negotiation of meaning in local interaction in everyday contexts. It is concerned with discourse practices; that is, it studies what people do with language and it emphasizes the performative qualities of discourse. Foucauldian Discourse Analysis was influenced by the work of Michel Foucault and post-structuralist writers who explored the role of language in the constitution of the social and psychological life. It is concerned with the discursive resources that are available to people, and the ways in which discourse constructs subjectivity, selfhood and power relations. While Discursive Psychology is primarily concerned with how 69 people use discursive resources in order to achieve interpersonal objectives in social interaction, Foucauldian Discourse Analysis focuses upon what kind of objects and subjects are constructed through discourses and what kinds of ways-of-being these objects and subjects make available to people (p. 90-91). While discourse analysts agree that discourse constructs knowledge, they differ as to the nature of reality. For example, Potter, Edwards and Ashmore (2002) argue for a relativist position, in which all reality is a discursive construction, whereas Parker (2002) argues for a critical realist position. The latter position accepts the presence of a material reality, such as biological and social constraints (i.e., patriarchy, capitalism, racism) that may limit possible ways of being and seeing in the world independent of, yet influenced by, discursive practices. Within a critical realist framework, ontology is rooted in realism, while subscribing to epistemological relativism (Willig, 2001). For example, within the experience of rheumatoid arthritis, the critical realist perspective accepts that embodiment, as expressed by disease and deformities may constrain and shape reality in material ways, independent of thought and perceptions. However, the meaning of the disease or disability occurs through interpretative processes which are situated within unique personal, social and cultural contexts. Parker (2002) has criticized the relativist position of discursive psychologists as morally reprehensible given the lack of a theoretical base through which to challenge oppressive societal structures. Parker (1992) also takes exception with Foucault (1980) in his formulations of discourse as a reflection of power/knowledge without attending to notions of power and oppression. According to Parker (1992) discourse and power need to be conceptualized as separate in order to enable the researcher to address issues of empowerment for the oppressed. 70 Researchers, across various disciples, have advocated for the use of a critical discourse analytic approach in the study of health and illness (Boutain, 1999; Huntington & Gilmour, 2001; Lupton, 1992; Rogers, 1996; Williams, 1999; Willig, 2000; Yardley, 1996). In particular, Williams (1999) has argued that a critical realist approach brings the biological body ?back in? to health related-research, underlying the importance of mind independent processes in the construction of self, identity and social interactions, particularly within the experience of a chronic disabling illness. In addition, Williams (1999) advocated for the use of a critical realist approach on moral grounds. According to Williams (1999) any discussion of ethics ?must ultimately return us to our embodiment (i.e., our fleshy all-too-human selves), the contingencies this involves, and the carnal link it provides with other similarly mortal beings and enmattered selves, rich or poor, healthy or sick,? with the neglect of embodiment otherwise described as ?an abrogation of our responsibilities in a real world? (p. 812). A primarily discursive approach has been used to explore areas of health and illness. Research has included topics such as asthma and motherhood (Radtke & Van Mens-Verhulst, 2001), accounts of health and illness (Radley & Billing, 1996), the portrayal of depression in the media (Rowe, Tilbury, Rapley, & O?Ferrall, 2003), chronic fatigue syndrome (Horton-Salway, 2001; 2002) and breast cancer (Wilkinson, 2000). Dixon-Woods (2001) also explored the two predominant discourses constructing patient and health care provider relationships: that of the patient as inexpert and deferent or that of the patient as enlightened consumer, as contained within patient information leaflets. In addition, ten Have (2002) has investigated the discursive structuring of the physician-patient relationship during medical consultations. 71 According to Willig (2000), Foucauldian-informed discourse analysis has been applied to notions of health and illness in two major ways, the deconstruction of expert talk and the identification of dominant discourses reflected in the talk of lay persons. Examples include the discursive construction of culture, disorder and treatment for the indigenous psychiatric patient in the talk of South African psychiatrists and psychologists (Yen & Wilbraham, 2003), the impact of contested disease, as in chronic fatigue syndrome, and the construction of a self (Clarke & James, 2003), and accounts of coping with dizziness (Yardley & Beech, 1998). However, there is a noted lack of research investigating how discourses constitute the lived experience of rheumatoid arthritis, particularly in respect to identity, subjectivity and agency. A critical discourse analytic approach was chosen for the present research for a number of reasons. Firstly, this methodological approach was consistent with the constructivist-narrative theoretical orientation of the researcher in the understanding of ontology as rooted in realism while accepting epistemology as relativistic (Parker, 2002; Willig, 2001). Secondly, a critical discourse analytic approach was ideally suited for the investigation of the constituting effects of discourse on identity, subjectivity and agency (Parker, 1992, 2002; Willig, 2001), particularly within the lived experience of a chronic illness (Lupton, 1992; Roger, 1996; Willig, 2000; Yardley, 1996). The use of a critical discourse approach also offered a unique opportunity to understand how various cultural discourses were appropriated and resisted over time, given the autobiographical format of the main archive, the Medical Log. Willig (2000), in particular, has advocated for such a longitudinal approach in understanding the interrelationship between discourses, practice, and subjectivity within the chronic illness experience. 72 A critical discourse analytic approach also permitted descriptive and critical reflections on how lived experience, in turn, illuminated constituting discourses, a focus which extended beyond discursive construction, while theoretically incorporating a view of power as both power/knowledge (Foucault, 1980) and as potentially oppressive (Parker, 2002). Finally, there was also a moral imperative to utilize a methodology that recognized the material reality of the body (Williams, 1999) given the experiential effect of ongoing progressive deformities, pain and associated suffering, an ontological reality that existed beyond interpretive stances. The acknowledgement of embodiment was also viewed as essential towards fostering a critical yet empathetic understanding of how available discursive resources contributed not only towards Ruth?s lived experience but also towards the ultimate decision to end her life. RESEARCH DESIGN Role of the Researcher Stake (1995) has identified the typical roles for the researcher within a case study as that of teacher, advocate, evaluator, biographer, theorist and interpreter. Within the present research, I had a biographical role in that the presentation of Ruth?s life history was used to enhance the personal, familial and socio-cultural context of the main research archive. I also had a theorist role in that the uniqueness of Ruth?s experience was used to illustrate complexity, ambiguity and contradiction, while also identifying experiences that were common to others (Stake, 1995). In addition, I had an advocate role, primarily through the research substantiation of Ruth?s private experience of pain into the public arena. 73 However, my principle role was that of interpreter. In this regard, understandings were constructions authored through personal biases and interpretations (Stake, 1995). A reflexive awareness of knowledge claims was facilitated through the use of a research journal. The journal documented theoretical understandings as well as personal reactions and interpretative responses throughout the research process. Texts for Analysis A series of Medical Logs, documenting Ruth?s experience with rheumatoid arthritis over a 40 year period were collectively used as the main research archive. The main document, identified as a ?Medical Log? by Ruth, contained over 76 single spaced pages of (typically) typed meticulous documentation primarily focused on physical symptoms, treatments and interactions with medical, and other health-related professionals, over a 23 year time period (1980 to 2003). There was also a two page ?Joint Log? (from 1962 to 1976), which preceded the Medical Log, that primarily focused on the process of diagnosis, treatment and surgery prior to Ruth?s relocation to western Canada. In addition, there was a one page ?Curse Log,? (from 1978 to 1980) which documented Ruth?s concerns about her menstrual cycle and associated medical care, and a seven page ?Flu Log? (dated November 1980 to February 1981) which contained meticulous documentation of ?flu-like? symptoms alongside pharmaceutical and dietary intake. For research purposes, the use of the term ?Medical Log? included all of the above archives. When quoted, few editorial changes have been made, other than the occasional spacing, spelling or punctuation change for purposes of readability. Otherwise, quotes have been represented as typed (or written) with idiosyncratic spelling and punctuation preserved in order to retain a sense of authenticity. 74 In addition to the above materials, the main informant, Elizabeth, provided a number of documents, letters and photographs belonging to Ruth that were reviewed for research purposes. These archives provided information in regards to the familial, personal, social and vocational arenas of Ruth?s life. In addition, the archives, listed below, offered a source of enrichment and reference for information obtained through interviews with informants. Familial Archives Paternal: ? certificate of birth (dated 1889) ? coroner?s court certificate (dated 1957) ? last will and testament (dated 1956) ? marriage certificate (dated 1921) Maternal: ? certificate of birth (dated 1886) ? certificate of cremation (dated 1972) ? newspaper photograph of mother in uniform during the First World War (undated) Personal: ? photographs of Ruth during childhood (n = 9), youth (n =1) and adulthood (n =10) ? a newspaper article, written in tribute to Ruth?s aunt, Margaret, with the notification of a memorial service (dated 1969) Personal-Social Archives: ? Ruth?s address and telephone book ? Ruth?s passport (1995-2000) ? 2003 calendar with personal notations by Ruth ? a 1975 travel journal (20 pages) ? personal letters (dated 2001) between Ruth and a long-term friend who was undergoing treatment for cancer (n = 2) ? papers (dated 1999 to 2004) related to Ruth?s will, estate and subsequent probate proceedings (47 pages) ? 2002 Representation Agreement (regarding personal and health care) including letter of notification to physician (17 pages) ? will and representation agreement working log (dated 1999 to 2002; 4 pages) ? a detailed list regarding notification of others ?In case of accident or ?sudden death? (January 2003) ? memorial book, with entries in Ruth?s honour (February 2003) ? poem written in remembrance of Ruth, with photograph attached (February 2003); 75 ? cards and correspondence received by main informant following notification of Ruth?s death in January 2003 (n = 10) Educational-Vocational Archives: ? confirmation and letter of recommendation (undated) from school attended in the years 1938 to 1946 ? college transcript (dated 1946-1950) and commencement program (dated 1950) ? educational certificates: corporate finance (dated 1952) and speedwriting (dated 1951) ? record of employment (1957 to 1969) and resume (1951 to 1958) ? a letter (dated 1961) inviting Ruth to apply for the position of editorial assistant with a scientific journal and subsequent correspondence (dated 1961) ? a historical review article, authored by Ruth, published in the graduates? society magazine (dated 1962) and subsequently republished in a scientific bulletin (dated 1965) ? a historical review article co-authored by Ruth and published in a scientific journal (dated 1969) ? photographs of place of employment at university from 1957-1969 (n = 20) ? archival picture (date about 1880?) of faculty member with students (n = 1) ? letters of recommendation (dated 1960 and 1971) from science department at university (n = 2) ? letters (dated 1971) regarding bestowment of a federal centennial plaque for exemplary scientific contributions within the field (n = 2) In addition, archival material (primarily personal correspondence), was forwarded by several informants following the research interview. These archives included the following: ? written correspondence (dated March 2006) regarding detailed recollections of Ruth from an informant, an elderly extended family member (5 pages) ? personal letters (dated 1980 to 2002) between Ruth and an informant, an extended family member (n = 17). In addition, the same informant sent letters (dated 1974 to1976) exchanged between Ruth and a university archivist regarding the transfer of her Aunt Margaret?s papers (n = 9) ? a list of papers (3 pages) and books (5 pages) subsequently delivered to the archivist was included. In addition, the informant forwarded 3 letters between Ruth and two university professors making research enquiries regarding Ruth?s Aunt Margaret (dated 1977; 1990; 1990) ? a letter (dated 1974) exchanged between Ruth and a collector as to the value of famous signatures in her possession was also forwarded ? personal letters (dated 1980 to 1996) between Ruth and an informant, who was a longstanding friend met while Ruth was employed at the university (n = 67) 76 Role of Informants Informants were primarily interviewed in order to provide personal, social and familial contextual information to enhance understanding of the main archive, the Medical Log. The primary informant was an extended family member as well as Ruth?s designated health care representative. As a beneficiary of Ruth?s estate (and legal recipient of all personal, household and domestic articles), Elizabeth was also the primary source of archival material, including the Medical Log. Elizabeth also served as the main gatekeeper to other informants, identifying possible informants with the provision of contact information. However, additional informants were occasionally identified through those interviewed. Informants interviewed also forwarded archival information, which primarily consisted of letters of personal correspondence with Ruth. In total, 17 individuals (middle-aged or elderly), consented to serve as informants for the research project. Of these individuals, 6 were extended family members (as well as 2 spouses), 2 were friends, having met Ruth in the early 1990?s through shared musical interests, and 5 were friends (including 2 couples) having met Ruth while she was employed at a university in late 1950?s. The daughter of a childhood friend of Ruth and one of Ruth?s ?godchildren? were also interviewed. In addition to the above, two primary health care providers agreed to serve as informants, Dr. Bridges, Ruth?s podiatrist since 1997 (who first met Ruth during a locum in 1994) and Dr. Lawson, Ruth?s general practitioner since 1980. While providing knowledge as to Ruth?s personal, social and familial life, Dr. Bridges and Dr. Lawson also provided 77 information regarding Ruth?s health care, information that was useful towards understanding the medical context associated with the Medical Log, the main research archive. Collection and Use of Information Following the receipt of ethics approval for the research proposal (Appendix A), the primary informant was asked to sign a consent form documenting permission to use the Medical Log for research purposes (Appendix B). Once potential informants were identified, a letter of introduction by the main informant (Appendix C) was mailed along with a letter of invitation to participate in the research project (Appendix D). Following notification of interest, informants received a follow-up phone call during which an interview was scheduled at a mutually convenient time and place. Prior to the interview, informants were asked to provide informed consent regarding their participation (Appendix E). Informants were also given information regarding relevant counselling resources within their community, a precaution taken given the potential distress associated with disclosures. In addition, the researcher offered to meet with medical informants for a follow-up interview once the completed research was available for review. A semi-structured interview (Appendix F) was used to gather contextual information regarding Ruth?s personal, familial, social, vocational and medical background, with questions tailored to the nature of the relationship at hand. For example, questions posed to medical informants were more focused on obtaining a relevant medical history, including ongoing treatment management and health-related concerns. Interviews were manually recorded, rather than audio-taped and transcribed, as interviewees were viewed as informants rather than research participants. Member checks were not performed as information received was treated as archival information. 78 Informants were interviewed for a total of 24 hours, with a duration range of 30 minutes to 2 hours, with the exception of the main informant who was interviewed for 5 hours. Of these interviews, 5 were conducted in person with the remaining 12 conducted through telephone contact. Prior permission was granted for the use of direct quotations. In addition to the above, Dr. Bridges, Ruth?s podiatrist was interviewed in person for 2.5 hours (date: May 02, 2006). Dr. Lawson, Ruth?s general practitioner, was also interviewed through two sets of e-mail correspondence, a format that was his stated preference (dates: June 07, 2009 and June 25, 2006). Both Dr. Bridges and Dr. Lawson granted permission for the use of direct quotations. Following a complete review of archival information, including interview content, two portraits of Ruth were constructed; one, a portrait of Ruth as seen through family and friends and, secondly, a portrait of Ruth as seen through Ruth?s primary health care providers. While portraits were primarily completed to provide a socio-cultural context to the main archive, the Medical Log, the portraits also served to foster vicarious understanding of Ruth?s experience through narrative means. All individuals referenced within the research project, whether informants or third parties, such as those referenced in the Medical Log, were protected through the use of pseudonyms, with identifying information changed when needed to protect confidentiality. RESEARCH PROCEDURES Discourse Analysis A series of steps, informed by guidelines suggested by Parker (1992) and Willig (2001) guided the analysis of the main archive in a nonlinear fashion. In addition, the steps 79 were used in an adapted form to reflect on the constructed portraits of Ruth. The steps which served as guides to the research analysis are summarized in Table 1. Table 1: Steps for Discourse Analysis Steps Procedure One ? Multiple readings of the text to identify the discursive objects of interest. Two ? Identification of the ways that the discursive object was constructed throughout the text using both explicit and implicit references. Three ? Identification of the location of the objects within various cultural discourses. Four ? Identification of the action orientations, including the task or functions that were accomplished discursively. Five ? Identification of subject positions. ? This included both subjectivity (available ways of seeing and being in the world) and, practice or agency (what could be said or done within this position). Six ? Identification of the ways in which different discourses contrasted within and against each other with respect to the discursive objects. Seven ? Identification of gaps, contradictions and ambiguities within different discourses in the text. Eight ? Identification of changes over time with respect to discursive construction of the object and subject positioning (and related subjectivity and agency). Nine ? Identification of institutions which were reinforced or marginalized when a particular discourse was utilized. Ten ? Identification of losses or benefits stemming from the use of particular discourses for the subject, others, and institutions. Given that research analysis was only meaningful within the context of the interpretations derived, analysis and discussion of the Medical Log (and portraits) was presented together with archival excerpts as a series of reflections. While Willig (2001) recommended a separate conclusions chapter for clinical implications and suggestions for future research, significant theoretical findings were also summarized in the Chapter 5 in order to enhance readability. 80 CRITERION FOR MEASURING THE WORTH OF THE STUDY The four research criteria used to establish worth included: propositional and naturalistic generalization, rhizomatic validity and pragmatic validity as described below. Propositional and Naturalistic Generalization as Validity Stake (1995) identified two generalizations relevant to case study research: explicated or propositional generalizations and naturalistic generalizations. Naturalistic generalizations were defined as ?conclusions arrived at through personal engagement in life?s affairs or by vicarious experience so well constructed that the person feels as if it happened to themselves? (p. 85). According to Stake (1978), propositional generalizations typically lead to explanation and prediction whereas naturalistic generalizations enhance understanding, increase conviction and determine action. Both forms of generalized knowledge are viewed as empirically driven, with the latter frequently intuitive rather than predictive in nature. Likewise, Bruner (1986) has challenged the distinction between ?logico-scientific? modes of knowing and ?narrative? modes of knowing, describing both as reasoned forms of understanding reality. According to Bruner (1986) the former rests on a scientifically reasoned conviction of truthfulness, whereas the latter rests on a reasoned conviction of verisimilitude, or lifelikeness. Propositional and naturalistic generalizations were used as interconnected measures of worth through out the research process, with explicated or propositional validity evident through the critical analysis of the constituting effect of discourses, with discourses, in turn, illuminated through lived experience. Given a research agenda geared towards understanding, rather than explanation, opportunities for naturalistic generalization were created through the provision of rich and detailed descriptions of contextual information, 81 along with detailed excerpts from the main archive, the Medical Log. The reader ultimately will be the judge as to whether or not vicarious generalization through identification or emotional resonance has occurred. As recommended by Stake (1995), detailed accounts and archival excerpts were included in order to foster transparency so that accuracy, completeness, bias and alternative interpretations may be considered. Likewise, the personal and theoretical background of the researcher was included, in order to situate interpretations within a specific context, creating an invitation for reflexive analysis by others. According to Stake (1995), the transparent disclosure of the reactions of others to research findings offers a source of validation for the existence of vicarious generalization. In this regard, a draft of A Portrait of Ruth: Through the Lens of Family and Friends, was forwarded to Elizabeth, the main informant, by e-mail. Elizabeth sent an e-mail response, dated December 30, 2006, which included the following comments: I read the portrait of Ruth last night and I was so moved! You have managed to capture the essence of her Spirit so beautifully. I was thinking of a charcoal portrait, but you have done a masterpiece in oils! I really appreciated the reflections as well. I think I?ll print it and read it a few more times so I can comment more on it when we meet. I just loved it! Tragically, Elizabeth was not able to review the completed version as she died suddenly from an acute illness before completion. The final version contained revisions that were directed towards theoretical expansion and were, otherwise, primarily editorial in nature. Rhizomatic Validity Deleuze and Gauattari (1988) introduced the metaphor of the rhizome to describe postmodern conceptions of knowledge as analogous to an unpredictable root-like growth as contrasted with the modernist notion of knowledge acquisition as the unidirectional, 82 branching of a tree (as cited in Kendall & Wickham, 1999). Patti Lather (1993) has drawn on this metaphor to develop notions of ?rhizomatic validity.? According to Lather (1993), rhizomatic validity is characterized by the following characteristics: unsettles from within, taps underground generates new locally determined norms of understanding; proliferates open-ended and context-sensitive criteria; works against reinscription of some new regime, some new systematicity supplements and exceedes the stable and the permanent, Derridean plan works against constraints of authority via relay, multiple openings, networks, complexities of problematic puts conventional discursive procedures under erasure, breaches congealed discourses, critical as well as dominant (p. 686). Rhizomatic validity was represented within the present research through reasoned and complex interpretations and analyses, which also noted contradictions, ambiguities and gaps in understanding. In addition, rhizomatic validity was demonstrated through an interpretative stance, which challenged the conventional knowledge/power of dominant discourses (i.e., psychological and biomedical) by privileging the insights offered by lived experience. Pragmatic Validity Pragmatic validity was used as a criterion for measuring worth given that the research was geared towards fostering an empathetic understanding that had practical results, or real 83 effects, in the lives of those with a painful chronic illness, such as rheumatoid arthritis, as well as in the lives of significant others and those professionals entrusted with the provision of care. For example, the present research has the potential to empower individuals to reflect on the constituting effects of predominant cultural discourses within their lives, identifying the alternative ways in which they prefer to shape their life in the present and future. Likewise, the present research has the potential to empower professionals to reflexively consider their participation in dialogic influences that co-construct meaning, with enhanced understanding of the need to understand the unique experience of the other within the lens of empathetic regard. The following comments were forwarded by e-mail (dated July 08, 2009) from a medical researcher and family physician (since 1981) serving as an independent research reviewer. The response of the medical reviewer both implicitly and explicitly endorsed and satisfied the criterion used for research validity on numerous grounds. For example, there was an emotional resonance with the reviewer on reading the Portraits and Medical Log, an extrapolation to personal experience, and a passionate call for changes to the health care delivery system in order to better serve the elderly and chronically ill. The research analysis was also viewed as logically derived, with the reader likewise endorsing experiential knowledge as ?rhizomatic? in nature. Finally, the reviewer described enhanced insight into the link between empathetic engagement and hope, a pragmatic source of relational empowerment for physician and patient alike. It was a privilege to read Heather?s dissertation. I was very moved by Heather?s portrait of Ruth through the lens of her family and friends and through the lens of medical practitioners. When I started out in practice, I assumed the practice of a 50-year old family physician, who had been diagnosed with cancer and died tragically within a year 84 of her diagnosis. The practice had many independently wealthy elderly patients who lived in an established neighbourhood. As I read Heather?s dissertation, I found myself thinking back to some of these former patients, elderly women ? some widowed, some single ? who led similar lives to Ruth?s. Like Dr. Lawson or Dr. Bridges, my knowledge of my patients was often compartmentalised, limited by our medical office interactions, which eventually spanned over many years. During the office visits, they would invite me to bear witness to their medical-physical world: medications or somatic symptoms or some other defined medical questions. Their psycho-social lives would elude me, as if that was considered by them not part of my domain; I knew so little about their other worlds. These patients set the tone for their medical interactions with me and I was guided by this not wanting to offend by asking intrusive questions. After all, I was their junior. I believe Ruth?s log does mention her delightful new ?young doctor,? Dr. Lawson. I resonate with this ethos! As I read Heather?s dissertation, I was struck by how unnecessary Ruth?s death was because of the failure of our health care system. Heather discusses the potential role of nurses working in collaboration with family physicians in the community, and so she touches on one non-functioning aspect of our province?s primary health care system. This resonates deeply with me. Women like Ruth, who suffer from debilitating chronic conditions, are served extremely poorly by our current fee-for-service primary health care model. The fee-for-service model is akin to family physicians running small business hardware stores, dependent on income provided by ?the doctor?s visit,? which occurs when a patient walks through the door and asks for something. However, a person like Ruth is reluctant to ask for any help. A different system, one based on a systems approach to patients, would have anticipated standard holistic care required for a person suffering from RA. This care and check list would have been made available to the patient, without her need to initiate it, and would therefore have normalised for her the RA condition. Having a multidisciplinary team available would have provided a psycho-social approach for Ruth, and her increased pain would have been anticipated and therefore recognized in the last months before her death. In addition, the incongruence between her reported symptoms (increased pain) and normal sedimentation rate (indicating lack of inflammation) might have been recognized earlier had a multidisciplinary primary health care team been caring for her. Many of the same patients mentioned above in the first paragraph could have adopted Ruth?s mantra, ?I must do it myself.? As they aged, and became frailer, they were not able to do it themselves. Gradually, as they lost more independence and agreed to assisted living situations, they were able to adapt to their changing life circumstances. However they died naturally; none of my patients hastened their own death because they lost the ability to do it themselves. Therefore, I find Heather?s analysis compellingly plausible that it was increased pain associated with hopelessness that caused Ruth to ?hasten her death.? 85 And, this brings us to the pivotal question, ?How can a family physician or other medical practitioner provide an ethos of hope for a patient suffering with a chronic illness while also providing the reality of honest assessment, prognosis and treatment options?? Dr. Lawson persisted in minimizing Ruth?s pain even when her pain was apparently severe. And, it was following a series of visits with medical practitioners that Ruth hastened her own death. Herein lies the messiness of family medicine ? the messiness that rhizomatic validity permits with all the complexities of contradictions and ambiguities. Heather?s analysis brings us to the only viable response to our pivotal question, which actually doesn?t provide a black and white answer but opens up more possibilities, and that is, ?by being an empathetic listener.? 86 CHAPTER 4: RESEARCH FINDINGS WITH CRITICAL ANALYSIS This chapter will provide a critical analysis of research findings in three separate sections. The first two sections will offer portraits of Ruth, as co-constructed by the researcher through the use of archival material, both written and verbal. The first portrait primarily relied on information provided by extended family members and friends with the second portrait primarily based on information provided by two medical practitioners, Ruth?s podiatrist, Dr. Bridges and Ruth?s attending general physician, Dr. Lawson. While providing socio-cultural and medical context to the main archive, the Medical Log, each portrait was also treated as a co-constructed research object, with critical reflections following presentation. The third section will provide an analysis and discussion of the main archive, the Medical Log, using research methodology informed by the work of Parker (1992) and Willig (2001). The critical analysis of each research object under investigation occurs both alongside extensive log excerpts, if deemed appropriate, and as a series of critical reflections after excerpt presentation. A condensed summary of research findings, critical analysis and discussion will be provided in Chapter 5. A Portrait of Ruth: Through the Lens of Family and Friends Ruth?s mother, Amelia, the youngest of three siblings, was born into the home of a Presbyterian minister in 1886. After graduating from high school, Amelia attended the alma mater of her elder sister, Margaret, an Ivy League college in the United States. When interviewed by the media, Margaret once remarked that her parents did not share the 87 customary view that ?it was extravagant and unnecessary for a girl to have a college education.? Amelia met Ruth?s father, Harold Williams (Canadian-born in 1889), on a troop ship during a transatlantic voyage during the First World War. Amelia was part of an alumni group of college women sent overseas to entertain the troops. Harold became enamoured with the indomitable spirit of Amelia when she enthusiastically played the piano while traversing U-boat infested waters. Ruth later recounted this story with great amusement, remarking that her father later discovered that her mother had been totally oblivious of any present danger. Amelia (age 34) and Harold (age 32) were subsequently married in 1921 with a son, Harold, born in 1924, and Ruth, second born in 1929. Ruth?s brother, Harold, was later described as a ?black sheep? and a ?disappointment? given parental expectations that he follow his father?s career path. Ruth?s brother, Harold, was subsequently diagnosed with a chronic mental illness and Parkinson?s (possibly from the side-effects of psychotropic drugs). Following the First World War, Ruth?s father was employed as an engineer in a resource-based industry in eastern rural Canada. This was a significant lifestyle change for Amelia, who was described as a charming society woman with a taste for the finer things in life. Amelia?s friendship circle included women in the upper echelons of society. Harold?s work eventually led to the family relocating to England when Ruth was 5 years of age. Ruth?s early childhood was apparently cosseted given the presence of a maid and cook employed by the family during this time. For the next four years, Ruth?s family resided in England while travelling extensively throughout Western Europe and the United 88 Kingdom. The outbreak of the Second World War was preceded by the family?s return to eastern Canada. Ruth?s childhood was generally described as ?loving? and ?normal,? with no reported major traumas or experiences of loss. Ruth?s childhood books contain endearing entries by her father while childhood photographs speak of an affectionate relationship with both parents. According to others, Ruth appeared to have a closer bond with her father, speaking of him with warmth and affection, while her mother was referenced by her beauty and expensive tastes. However, there was estrangement between Ruth?s father and his younger sister, Mary. Mary apparently refused family contact following an unresolved conflict with Amelia. In addition, Mary threatened Harold?s older brother, John, with the severance of their relationship if he did not follow her footsteps. Ruth was later to meet numerous members of the Williams clan following the death of her mother in the early 1970?s. The adult Williams children were apparently determined to put an end to family hostilities. In this regard, Aunt Mary was forced to relent and subsequently agreed to meet with Ruth. Aunt Mary was immediately ?taken? by Ruth and thereafter fostered an affectionate relationship. Ruth attended a prestigious all-girls private school throughout her childhood. However, by age 12, Ruth was noticeably tired and frequently falling asleep in classes, symptoms which lead to parental concern and subsequent medical consultation. In hindsight, Ruth wondered if such tiredness had heralded the arrival of rheumatoid arthritis during her childhood. 89 Ruth?s maternal aunt, Margaret, was a seminal influence in her formative years, with frequent visitation during summer holidays. Margaret went on to become a university educator, a costly decision for women at that time. Approximately five years before her death, Margaret shared the portrait of a handsome young man with a visiting extended family member. She remarked that she had chosen against marriage in order to teach at the university, given societal constraints at the time. Margaret?s academic accomplishments included an honorary doctorate and a Guggenheim Fellowship. In general, Margaret was remembered as an outspoken critic in political and civic affairs, being an ardent supporter of minority rights and progressive employment practices. On graduation from high school, Ruth attended the alma mater of her mother and maternal aunt, graduating with arts degree (high honours) with a minor in journalism. Ruth had a keen appreciation of her scholarly aunt?s pioneering work as a woman, later to become the archivist for her aunt?s professional and personal papers. In 1976, Ruth personally delivered four boxes (weighing 140 pounds) of meticulously recorded material to her aunt?s alma mater to ensure their survival in the public domain. Following graduation at age 21, Ruth sought employment as a writer within the field of advertising as well as a position within the Canadian Broadcasting Corporation. After doing secretarial work from 1951 to 1954, Ruth returned to Canada to pursue a graduate arts degree. From 1955 to 1958, Ruth worked as a graduate research assistant within the university department, with duties that included editing, typing and the supervision of scientific reports. From 1958 to 1969, Ruth acquired a leadership position within the department, which she held until her retirement at approximately age 40. During this time, Ruth served as an expert witness in both civil and criminal court cases, reportedly 90 entertaining graduate students with many humorous tales regarding legal proceedings. In 1971, Ruth received a centennial plaque in recognition of scientific contributions to her discipline. Ruth was confident in her professional abilities and apparently felt no need to advertise her accomplishments. In this regard, two informants (extended family members) were under the impression that Ruth had been a secretary while employed at the university. Elizabeth, the main informant, remarked that Ruth was an unusual woman for her era, a curious and independent thinker who had also pursued an education and career. Ruth had an otherwise unusual life trajectory, in that she had remained single and childless. Elizabeth ruefully remarked that Ruth had lived at a time when it was appropriate for a woman?s name to be published three times, when she was born, when she married and when she died. Archival letters also suggested a feminist orientation to life. For example, on one occasion, Ruth wrote, with apparent irony, that she knew of a female student who had returned to residence after being left with too much of the cooking and ?Household Labour.? On another occasion, Ruth humorously cautioned a young woman against visiting St. Andrews in Scotland, noting that they permitted no admittance to women, including female cats. While Ruth was working at the university, Ruth?s father purchased an expansive apartment within a ?mansion? for her mother shortly before his death. The building was described as a ?stone edifice? complete with a doorman at the entrance and a rickety elevator. One informant spoke of the apartment as being in a ?time warp? given the pink silk down cushions on the sofa and a space under the stove for Queen Ann legs. It was furnished with antiques and oriental rugs. 91 Numerous informants conveyed the impression that Ruth?s mother was both domineering, or a ?grand dame? and demanding, or ?bossy? and ?curmudgeonly,? as an individual. In the mid-1960?s, Ruth became her mother?s caregiver for a ten year period after her mother was bedridden in the aftermath of a stroke. During this time period, Ruth also disclosed to a university friend that she was alarmed by her mother?s expenditures. In particular, Ruth did not know how she could pay for numerous bottles of spirits ordered by her mother for entertaining purposes. The informant concluded that Ruth?s mother was unaware of their financial state and that she was lacking in ?common sense.? Ruth eventually retired from her university position given care-giving demands, in spite of requests by colleagues that she reconsider her decision. At one time, Ruth temporarily returned to work after hiring day time in-home assistance. However, Ruth had difficulty managing both the expense and the demands of work and care-giving responsibilities. Informants had different impressions of the meaning of this vocational loss. Many informants assumed that Ruth had retired given care-giving demands. In this regard, an entry in Ruth?s record of employment noted that she had left the university ?in June 1969, to take care of AW (Replacd nurse.).? As such, Ruth?s retirement was met with consternation by some, as her actions were viewed as preventing both the development of career aspirations and opportunities for marriage. Two informants, both academic, had the impression that Ruth had regretted the loss of her career, with Ruth once referencing progressive disabilities as the reason for early retirement. However, another informant said that Ruth had been glad to retire, even though Ruth had retired in her early 40?s, as she reportedly hated getting up in 92 the morning. The decision was accepted at face value as a relief, in spite of the presumed reality that Ruth would have been getting up to care for her mother. Following the death of her mother, Ruth moved to western Canada in 1980, given the harsher winters of eastern Canada. Ruth was afraid of falling during the winter months given icy conditions, having occasionally been confined to her apartment for three days at a time. Ruth eventually moved into a condominium, an astute financial investment that also provided easy access to amenities (i.e., shopping and transit) and the offices of various health professionals (i.e., dentist, general practitioner and podiatrist). Ruth?s intelligence and excellent managerial skills were quickly recognized by her strata council. Ruth became the business manager for the building, managing finances and overseeing work performed by contractors. As was typical of Ruth, financial accounts and repairs were documented in meticulous typed lists. Throughout her life, Ruth had an extensive social network, known by others for her warmth, intelligence and a ?wry? wit that could also be caustic when reserved for political commentary. Ruth had a ?traditional? way of keeping up correspondence, through frequent letters, cards and gifts for special occasions. Visits were eagerly anticipated by both adults and their children, with Ruth frequently treating others to a dinner out. She was otherwise financially generous, providing assistance to a friend undergoing expensive cancer treatments, and, on another occasion, bequeathing an early inheritance in response to financial need. Ruth was also a designated godmother to more than one child, a reality which reflected both the affection and esteem for Ruth that was held by others. She was described 93 as ?psychologically astute? given an ability to relate to an individual whatever their age and interests. Ruth was also described as an extremely frugal person. She frequented a local United Church bazaar and bought good quality used clothing with great personal satisfaction. She also slept on her childhood mattress, described by Ruth in a letter as ?vintage 1936, but nevertheless, a recognizable Bed.? The bed was relinquished for guests, one of whom remarked that ?if it didn?t cause her arthritis, it should have.? All other furniture in Ruth?s condominium had been inherited from her family home. A friend also told stories of ?petty larceny? on Ruth?s part with great amusement, describing the pilfering of tea bags at a financial forum, the pocketing of biscuits, and a habit of reading the business and travel sections of the Globe and Mail at a bank ?for free.? Ruth?s frugal nature was viewed as a response to being disabled and living on inherited capital. An extended family member also described frugality as a family characteristic that had developed through the consequences of living through the Depression and the Second World War. While informants were occasionally concerned about Ruth?s financial state, these concerns were without warrant. Ruth directed her own financial portfolio and was reportedly ?brilliant? in making astute investments. Ruth?s stockbroker expressed considerable dismay on hearing of her death, noting that Ruth was frequently more up to date on financial matters than he was. At the time of her death, Ruth was very financially secure. If Ruth spent money on herself, it was primarily to fund life passions, such as music, travel and friendship. Others described her spirituality as an ?aesthetic spirituality.? Ruth laughingly referred to herself as the ?heathen cousin? or ?lapsed Presbyterian? when 94 speaking with Stevan, a retired Anglican minister who was also the husband of Elizabeth, the main informant. Ruth practiced an ardent love of classical musical through membership in an opera guild, hand delivering sandwiches for opera rehearsals via the public transit system. Ruth also served as librarian for the guild?s music recordings, demonstrating an ?encyclopaedic memory? in her ability to immediately identify the opera, year and artist of a particular recording. As part of the opera guild, Ruth went on numerous opera tours in the United States. Ruth was otherwise a seasoned international traveller, having travelled regularly within the eastern United States as well as Egypt, Spain, Greece, Hawaii, Chile, Hong Kong, Thailand, the Caribbean, and the United Kingdom (a favourite destination). In this regard, Ruth could recite the chronology and biographies of various monarchs throughout English history. Ruth was a keen observer of different cultures, as was evident in the following excerpt from a handwritten diary of an Egyptian tour in 1975: Friday, December 1975 (? Sunday) (Moslem holy day) Had early brek and debarked from ship at 8:20 am. Went on bus to site of old Memphis, now green area with hi water table and date palms. Area densely populated ? villages, donkeys pulling 2-wheeled carts with 7 or 8 people on, camels, water buffalo, goats, fat-tailed sheep, mud-brick houses, dust, lots of native outfits, numerous kids, a few bikes loaded like donkeys (even with oil drums!) Long robed men ride bikes. Schools with pix of Nasser on outside. Dogs (not too thin) mostly in sand-color, a few black, one white! A hen or two. Everything sand-color except lush irrigated fields (harvest thick, long green clover as fodder for animals) and date palms (dates mostly picked). Canals and ditches; saw shadufs and water wheels (tin or metal.) Intensive cultivation ? rows between rows of cabbages, beans, etc. In ?village markets or stalls, tomatoes, lots of oranges, sugar cane, etc. Cane eating as a candy (our bus driver got one). Cultivated areas in dense population ends abruptly at desert edge; desert is a real fine soft sand, or 95 stony gravely plain as on road to Faiyum. Some Bedouins who have moved to farm area, or to edge of it, live in shanties or mud-brick or brush huts, ? small, with goats, kids, etc. Very small circular mud-brick (spiral-shaped ... entrance) or brush shelters seen in fields ? dono if for animals or people! Ruth was also known for her emotional reserve and reticence to speak of personal difficulties. This was generally attributed to an Anglo-Saxon background in that a ?stiff-upper lip? was viewed as an admirable strength in character. Any life difficulty alluded to was typically brushed aside by Ruth with the comment ?enough of that.? In this regard, informants typically said that they were not Ruth?s ?confidantes.? However, such privacy was not viewed as problematic as others generally identified with Ruth?s way of being. Topics were generally avoided if there was concern with causing discomfort in the other. For example, an extended family member who had used her childhood bed as a guest told Ruth that she had slept well when questioned, to avoid potential embarrassment. One elderly informant remarked that recent cultural changes had created ?more self study? than was the case during Ruth?s childhood and adulthood. She said, with apparent irony, that she had never told Ruth that she thought she was ?incredible in what she had done? remarking that it sounded like an ?obit? when said to a person in their 70?s. One informant remarked that discussions of difficult family matters would have been viewed as dishonourable by both Ruth and others. In this regard, many informants were unaware that Ruth had a brother or, if aware, that he had a chronic mental illness. One informant noted that Ruth?s medical problems and her brother were part of a list of forbidden topics. In this regard, several informants had the impression that Harold?s mental illness was a source of stigma and personal stress. Elizabeth noted that Ruth?s emotional reserve extended to the experience of pain and related distress. Elizabeth remarked that she had experienced similar early childhood 96 training to repress feelings for the sake of others. By way of example, Elizabeth recounted the following childhood memory: At the age of 4, Elizabeth had required blood testing as her brother had rheumatic fever. Just as the needle was approaching her arm, Elizabeth?s father exclaimed that she would be rewarded with a chocolate or butterscotch sundae if she did not cry. According to Elizabeth, Ruth was fascinated with psychology but would have viewed counselling as ?nonsense,? or perhaps ?touchy feely? as it was not a ?hard science.? Ruth gave the impression of being intrigued but puzzled by Elizabeth?s professional interest in palliative care. Informants unanimously reported that Ruth never gave the impression that she was grappling with depression. She was generally described as a woman who had a ?huge zest for life.? When confronting life challenges, Ruth was typically described as proactive regarding solutions, rather than obsessed or self-pitying. For example, Ruth discovered that there was a significant amount of damage to her possessions following her move to western Canada. She faced this challenge, made more significant through the presence of disabilities, with characteristic assertiveness and humour, as noted in the following excerpt from a letter written at that time: April 06, 1980 Dear Constance, My furniture arrived with quite a bit of damage to things like Dining-room Table (2 legs torn off), Chairs (slats knocked out), Mahogany chests (legs off), etc., but strange to relate, pictures, mirrors, and almost all things packed in boxes OK (though some boxes had actual holes in them). The large items were evidently packed badly in their container in?.. So I have zapped them with a long, hairy Claim Form, original plus four (4) added typed pages, all in quintuplicate, with Appendix from Phillips (Fine Art Dealers & Appraisers) giving Values of Antique Furniture for Insurance. This document 97 was sent to them registered mail, and tomorrow morn I must lock horns with the unfortunate Claims Manager to see when he?ll come & view the damage. In the meantime, all things are left as is with tables waving their broken mahogany legs in the air, which sort of slows down Getting Settled (but let?s face it, I wouldn?t be moving that fast, anyway.) As with depression, informants did not experience Ruth as anxious throughout her life. If anxiety was expressed, it was in the seeking of reassurance regarding the well-being of another. On one occasion, an extended family member informed Ruth that she was suffering from mercury poisoning. Ruth responded by researching the topic and sent her ?every article on the subject.? Ruth was also described as a woman of principle who did not impose herself or hold grudges towards others. She occasionally appeared to avoid possible conflict and hurt through indirect means. For example, she occasionally developed a ?fake cough? to excuse herself from noisy family gatherings at Elizabeth and Stevan?s home. She was also known to submit letters critical of current affairs to the editor of the local newspaper under an assumed name and address. However, she was also known to deal with difficult situations in a direct assertive manner. In this regard, Ruth reportedly asked her brother to leave during the time of their father?s death. Harold was in an apparent delusional state, insisting that the man in the coffin was not his father. There was some evidence that Ruth used alcohol for general stress management and relaxation. On one occasion, a family member remarked that Ruth immediately asked for a glass of sherry upon arriving from a distressing visit with Harold in the eastern states. Ruth also disclosed to Elizabeth that she liked to have sherry at lunch as it made her ?sleepy? for an afternoon nap. In this regard, Elizabeth remarked that sherry, particularly at lunch time, was a cultural way of life that had been fostered since late adolescence. Elizabeth further 98 noted that Ruth?s intake of alcohol was moderate, consisting of a small glass of sherry plus two gin and tonics later in the day. Informants reported that there were no behavioural indicators that Ruth misused alcohol. Ruth?s was unanimously portrayed by others as highly rational, resourceful and resilient when coping with the lived effects of rheumatoid arthritis. While her condominium had been assessed by an occupational therapist, there were few obvious assistive devices, other than a raised toilet seat and a bar for the bathtub. In general, Ruth appeared to adapt implements that were available to her. For example, a hammer and screwdriver was used to open jars (until she received an electric can opener and a jar opener as gifts). A paring knife was brought when dining out, to cut meat, along with a tiny pair of scissors, for snipping packets of sugar. In the early 1980?s, Ruth drove with a pair of pliers in order to turn the key in the ignition and open the car door. She was described as a ?bat in hell? when driving. A university friend described a hilarious, and presumably hair-raising, journey with Ruth along a treacherous coastal highway. Ruth had reportedly adapted to driving a standard vehicle by taking both hands off the steering wheel whenever she had to use the gear shaft. A well organized system was clearly evident in Ruth?s home. Kitchen supplies were within easy reach, with the rest of the house spotless and well-organized. One family member commented that Ruth had systems for all acts of living (i.e., for cooking, for traveling, for dressing) as everything took effort. In this regard, informants noted the simplicity of meals served within her home, given the amount of energy spent in food preparation. For example, rice was served, rather than potatoes which required peeling. More than one informant commented on Ruth?s famous ?toads foot casserole,? otherwise known as tuna casserole. Ruth appeared to couch this simplicity in humour, noting that her 99 imaginary temperamental cook and maid from Budapest (Mergatroid and Katrinka) had been ?let go? for the evening. These imagined servants were a source of considerable amusement to others. May 24, 1983 Dear Constance, Today is a gorgeous day, and I had to force Katrinka (my very difficult, imaginary Household Help) to do a little cooking and cleaning in preparation for the coming visitors. (I don?t know if I ever introduced you to Katrinka or my butler, Murgatroyd. K. is from the Old Country (I think Transylvanian), and has fits of temperament, as well as being exceedingly lazy ? I find it hard to get work out of her at all, at all. She throws plates at poor old Murgatroyd, who is well past retirement age, and finds it hard to take.) Ruth hired a housecleaning service to provide practical assistance. However, there were inherent risks involved as Ruth dismissed two housecleaners for stealing. One informant thought that Ruth resorted to vacuuming with a hand held device. However, there were two housecleaners at Ruth?s memorial tea who had provided services for a year. Ruth?s organized and simplified way of life was also evident when she travelled. For example, Ruth used two small attach? cases that could be carried by her forefinger and thumb when she travelled internationally. One friend also commented on Ruth?s arduous self-care during an opera tour involving attendance at four to six operas. Ruth had a night routine that included a long hot shower and extensive foot care. In the morning, she again applied creams and foot rolls prior to fitting orthopaedic foot wear. Ruth also coped with obvious physical deformities with a self-depreciatory humour. For example, she referred to her hands as ?claws? or ?appalling-looking tentacles.? On numerous occasions, Ruth referred to herself as a tottering little old lady or a decrepit senior citizen. 100 Numerous friends challenged Ruth?s self-derogation in describing her physical appearance. In this regard, Ruth did not appear to view herself as attractive, even during her youth. On more than one occasion, Ruth remarked to several friends that they had no idea what it was like to be a plain girl at school when they were one of the pretty ones. In the last decades of her life, Ruth had a stooped posture and an ?elfin? appearance, attributed to facial bone structures that had been affected by rheumatoid arthritis. Her hands had obvious deformities, with a classic ulnar deviation, characteristic of the deformities associated with rheumatoid arthritis. She walked with a pigeon-toed shuffle, an awkward gait. She did not dress in a feminine manner, preferring to wear tailored white blouses and slacks that were presumably worn for comfort. Given Ruth?s self-image, it was not surprising that she did not like to have picture taken or displayed. On one occasion, Revenue Canada requested new information in support of her medical disability income tax deduction. Ruth was advised to send in photographs of her deformed hands and feet in support of the claim. One informant remarked that this process was likely experienced as humiliating, given the emotional impact of exposure on a woman who felt physically defective. However, on another occasion, Ruth provided a photograph of her hands, as a classic example of severe hand deformities, for an arthritis research journal at the Arthritis Centre. She spoke to numerous informants of this experience while referring to herself as a ?centerfold.? In this regard, Ruth conveyed apparent pleasure with having provided a photograph as a contribution towards research. As such, Ruth?s experience of picture-taking appeared to be driven by both context and subjective interpretation. 101 Ruth appeared to deliberately mitigate any perceived discomfort that was created by her physical deformities. For example, restaurant servers, and fellow diners would be told ?don?t worry, I?ll get there? given that a meal took three times the norm to consume. When new acquaintances offered their hand in greeting, Ruth would immediately engage in lively conversation in an apparent effort to avoid social embarrassment. On occasion, Ruth covered her hands when she was in public. Numerous informants noted that Ruth was so adept at adapting and forging ahead that they were caught off guard when reminded of her disabilities. For example, Elizabeth recalled travelling through a historical exhibit with Ruth, noting that she was taking extra time at each exhibit. Afterwards, she realized that Ruth had likely been micro-managing the effects of the physical exertion in a non-obtrusive manner. Ruth was also typically well informed on recent medical research, with subscriptions to medical newsletters from both Berkley and John Hopkins University. Ruth also kept A Compendium of Drugs for reference as needed. Family members and friends were frequently informed of recent research regarding disclosed physical ailments. Ruth typically did not speak of her relationships with health care providers nor did she typically speak of the resources that she was using. Ruth conveyed a sense of satisfaction with the medical profession, and an appreciation for her general practitioner given a shared love of travel. However, one informant, who occasionally provided transportation to medical appointments, thought that Ruth was rarely physically examined, and that Ruth likely minimized her complaints, given that scheduled appointments were often perfunctory. The same informant, a former health professional, thought Ruth?s physical concerns were superficially addressed through standard laboratory tests. Elizabeth, in 102 particular, raised questions regarding the lack of holistic care given to Ruth, referencing the treatment of physical symptoms and pain after reading Ruth?s Medical Log. After Ruth?s death, one extended family member also raised concerns regarding the toxic effect of the combined use of Tylenol and alcohol. A few informants also questioned whether or not Ruth should have been under the care of a rheumatologist on an ongoing basis. In this regard, Ruth told one informant that ongoing treatment by a rheumatologist would provide no benefit as she was a ?burnt out case.? Ruth appeared to maintain the range of motion and function of her arthritic joints primarily through exercise, including the use of a heated pool and frequent walks. One family member understood that Ruth was eventually denied access to a heated pool at the Arthritis Center as there were ?others on the waiting list.? As noted in the excerpt below, Ruth persisted in swimming as an exercise even though she did not enjoy the activity and thought the environment exposed her to infectious agents. Feb, 10, 1987 Dear Constance I go and do my duty once a week in a warm pool with adjoining hot Jacuzzi for dilapidated souls (one has to have a certificate of Dilapidation to get in), and I wave my tentacles about for about an hour or so, but it is so boring ? my fellow delapidateds are appalled that I still have to follow a list of exercises, after all these years (without a list, I?d forget them quickly!) Feb 11 ? At that point I paused to go catch the bus to that pool. Today I?m slightly stiff, which gives me a comfortable Presbyterian-Ancestor feeling that I Did My Duty! One family member remarked that when she commented on various treatments available for arthritis, Ruth typically replied that she had tried various treatments but that they did not seem to work. When questioned, Ruth also disclosed that she had tried different medications, apparently for pain management, but had resorted to Aspirin given the 103 deleterious side effects of other medications. Whether or not Ruth was accurately disclosing her experience or deflecting unwanted advice was unknown. As noted in the correspondence below, Ruth was occasionally subjected to unusual and unsolicited treatment suggestions. February 11, 1975 Dear Constance, Yes, my quilt dealer reappeared, wondering what the fuss was about, and why his wife was on the verge of flying to Bangkok! He also presented me with a weird-looking wooden snake bracelet with glittering eye, guaranteed to cure arthritis ? I can?t get the durn thing on, which is probably just as well (it would scare anyone out of 10 year?s growth, outside of Indonesia, that is). Ruth also appeared to cope by minimizing her physical complaints when speaking with others. In fact, Ruth appeared to minimize the impact of rheumatoid arthritis in general. Ten years prior to her death, Ruth voiced concerns regarding the apparent ill appearance of a friend (diagnosed with rheumatoid arthritis) in the following manner: Nov 27, 1993 Dear Constance, I hope that I?m not unduly alarmist, but surely it?s not just rheumatoid arthritis which is having that effect on him. To others, Ruth made reference to otherwise debilitating symptoms, such as long standing recurrent diarrhea (aetiology typically unknown) with euphemisms, such as the Green Apple Fox Trot or Tourista. However, occasional disclosures highlighted the persistence required to pursue a love of travelling, in spite of such symptoms. For example, following a trip to Spain, Ruth remarked that she had wondered if she could get on a bus, given her diarrhea. On another occasion, Ruth remarked that an Egyptian river cruise had been almost ruined as she had been confined to her cabin. There was no reference to such debilitating symptoms within a detailed diary kept for the trip. 104 Likewise, informants were typically unaware of the painful condition of Ruth?s feet and the constant physical care required, during travel and otherwise. Two informants became aware of the condition of her feet only through indirect observation. One observed the care taken to purchase shoes, given attention to known tender spots, and the other observed an extensive night routine for foot care while roommates with Ruth during an opera tour. Elizabeth reflected that others would have resorted to ?armchair traveling? if they had grappled with Ruth?s symptom load. Ruth?s coping style was also characterized as being ?fiercely independent.? In this regard, Ruth typically refused offers of help, with a friend noting that the best way to offer assistance was non-obtrusively. One family member remarked that Ruth refused assistance threading a needle, while another remarked that she insisted on serving sherry even though it took three ?rocking? attempts to get out of her chair. Ruth?s independence was generally thought to stem from a desire to be a burden to no one. According to Stevan, Ruth invariably began telephone conversations with the question: ?Is this a bad time? Am I interrupting?? He poignantly remarked that it would be ?nice to be interrupted now.? Other informants shared the impression that Ruth?s fear of being a burden had developed in consequence to caring for her bedridden mother and otherwise witnessing the effects of eleven years of institutional care on another extended family member. On one occasion, Ruth remarked that her mother had been ?excessively demanding? while another informant disclosed that Ruth had voiced resentment that the caretaking role had been assigned to her as a woman. These personal disclosures were viewed as uncharacteristic of 105 Ruth, who was otherwise described as ?extremely private.? A few informants wondered what impact the stress of care-giving had on Ruth?s disease process. Ruth?s insistence on independence appeared to be an occasional source of frustration to others. One family member challenged Ruth?s refusal to accept household assistance from another family member. Ruth had reportedly told her that she was interfering but later called to apologize for being ?so sharp.? Ruth reportedly said, ?I have to take care of myself,? and that it was her sole responsibility to do so. Stevan poignantly remarked that Ruth?s coping style prevented him from expressing his ?protection,? or solicitous affection, or a ?thanks? for her many gestures of generosity. He said that while Ruth did not want to be treated ?like a cripple,? her independence also prevented him from expressing gratitude, which was experienced as a form of denial. Still another friend wondered if Ruth?s fierce independence had prevented her from knowing that she could have been helped more and loved the same. The reluctance to seek assistance outside of self was poignantly stated by an older single informant. She remarked that you learn to be independent when you live alone, without family members, or a daughter, in particular, to provide advocacy and assistance. She remarked that she herself had said that she was ?fine? when she ?wanted the other person to push,? presumably in offering assistance or support. She remarked that ?independence becomes a mantra when you are a single woman living alone.? This sentiment was echoed by another older single friend who reflected on Ruth?s ?formidable defences? as expressed by her emotional restraint and persistent optimism. As a single older woman, she identified with Ruth?s way of being, remarking that such behaviour was driven in part by a desire to preserve friendships out of fear of becoming a burden. 106 Paradoxically, Ruth?s refusal to be a relational burden also contributed to her being perceived as courageous. Her lack of complaints was viewed as both spirited and inspirational, an exemplar for living with a chronic painful illness. For example, one family member noted that the impact of Ruth?s life had been ?absolutely positive? in that Ruth had never burdened her with her problems for a moment, instead maintaining an optimistic outlook. Another family member described Ruth as ?brave? as she had not moaned or cried about her difficulties. In fact, Ruth ?made you think that nothing was wrong.? Ruth was described by others as a ?good sport? and as an individual who ?did not take advantage? or ?presume on others? given her disabilities. Informants also remarked on Ruth?s increasing infirmity over time. For example, in spite of being athletic in her youth, Ruth sold her skiing equipment shortly after her hand surgery in the early 1970?s. As early as 1976, Ruth?s letters were typed given difficulties with handwriting. A family member also remarked that Ruth had given her a piece of heirloom jewellery when she was no longer able to do the clasp. Informants described Ruth as having increasing difficulties with various tasks over time (i.e., hair brushing, food preparation, and rising from a sitting position). In particular, Ruth?s walking gait became increasingly laborious and awkward. One informant also remarked that Ruth appeared thinner over time but that she still maintained a healthy appetite. Towards her later years, Ruth had groceries and prepared meals delivered to her home. During this time period, a few informants thought Ruth had relied on soup as a primary source for nutrition. Elizabeth described Ruth as a ?minimalist? in the later years of her life, apparently creating simplicity in response to life challenges. One family member noted that Ruth gave 107 her a personal possession each time she saw her during this time period. Traditional means of correspondence, such as letters and gift-giving, on special occasions, gave way to phone calls. As evident in the excerpts below, these losses and relational shifts were addressed through Ruth?s characteristic humour: January 18, 1973 Dear Constance, I sold off my ancient skis, boots etc. to a cute young thing who read my ad. in ? ?Daily?, and I?m glad my skiing days are over, as I?m sure that I couldn?t even keep up with John and Jane. January 12, 1990 Dear Constance, This was my big year for receiving Shortbreads and Fruitcake, plus chocolate-covered Nuts?.they are all being recycled frantically to people who didn?t send-?em! I loathe fruitcake and choc-nuts, and can eat maybe two shortbreads per day, not great galloping tins of them, and I?m now trying to think of a diplomatic, gracious way to discourage their arrival next year! This is a strain on my so called brain, to say the least. Maybe I?m getting Anti-Gift in my declining years, though I always appreciate your considerate and thoughtful ones ? but perhaps we should swear a Great Oath on a plausible set of bones: No More Gifts, just the occasional letter or phone call! Think what you will be spared ? you otherwise might be in danger of receiving a crumbling Fruitcake around Easter, encrusted with ageing choc-nuts, as I start to lose my grip! November 23, 1996 Dear Constance, Thanks for the labels, and that is a great new skill to have, but I don?t think I?ll take advantage of it, since I plan to cut down drastically on my hunt-and-peck correspondence. Fifty-five cards per Yule is a bit much, and so you will hear fewer bleats of complaint from now on! A phone call now and then to a favoured few will have to do. 108 May 06, 2002 Dear Sylvia, In any case, perhaps you should keep any Williams things and not bother about sending me copies, though it?s a very kind thought. I am really at the stage of Getting-Rid-of-Things, and am trying hard to empty out my bulging old filing cabinet! Ruth also grappled with constant exhaustion, noting that she could ?sleep 24 hours a day? towards the later years of her life. She would frequently fall asleep upon sitting, once to the annoyance of concert goers as she snored during a performance by tenor Placido Domingo. In spite of chronic fatigue, Ruth continued to use the public transit system, typically with several bus exchanges, to either attend functions or to visit with friends and family members. Ruth occasionally ventured out simply to express care to another. One friend recalled Ruth travelling by transit to hand deliver soup when she was house bound with the ?flu.? However, there was a noticeable decrease in the number of times that Ruth hosted others in her home or undertook international or local travel over time. As noted in the humorous excerpts below, one of Ruth?s favourite mottos reflected a life lived with a consciousness towards inevitable decline: January 18, 1980 Dear Constance, My particular bug departed around New Year?s Day, and I am now tottering about in my usual, normal manner, somewhat behind with my correspondence, and once again beginning to entertain vague thoughts of trips here and there, galloping off in all directions as per Stephen Leacock. If nothing else, my limited pocketbook and energy should restrain me, though I have the feeling that both will be increasingly limited in coming years?.Onward and Downward being, as always, my motto. 109 Sept. 21, 1983 Dear Constance Time moves along at a rapid pace, in fact everything does except me ? I get slower every year! When questioned, informants were adamant that Ruth would not have used any instrumental assistance, such as a motorized wheelchair, if it had increased her dependence on others. One informant also remarked that Ruth would not have been able to use a cane, given her severe hand deformities. Ruth was reportedly well informed of assisted living alternatives in her neighbourhood, having researched such facilities for a friend. However, any form of institutionalized care was viewed as ?incompatible? with Ruth. In this regard, Elizabeth thought that Ruth?s care of her bedridden mother (coupled with witnessing Elizabeth?s mother in extended care for 11 years), had ultimately convinced Ruth to end her life out of a determination to avoid such circumstances. Numerous informants remarked that Ruth denied that she experienced pain when directly questioned. They also noted the lack of nonverbal indicators that Ruth was in pain, such as grimacing or guarding behaviours. One informant remarked that Ruth discussed proposed hand surgery options with her husband, a physician, in the early 1970?s. In reference to her hands, Ruth had remarked that the ?only good thing? about her disability was the lack of pain. However, the same informant remarked that Ruth had ?fierce some trouble? finding comfortable tender tootsies shoes as she had ?hammertoes.? Similarly, Ruth remarked to another informant that she was ?lucky? that she did not have any pain, apart from that created by her disability, approximately 12 years prior to her death. 110 It was also noteworthy that Ruth disclosed to friends during the last few years of her life that she had decided against hand surgery in the 1980?s as she had experienced excruciating pain and minimal gain in functional ability through two previous hand surgeries in the early 1970?s. As noted below, excerpts from correspondence in the month following Ruth?s first hand surgery, a right hand thumb fusion, are devoid of any mention of pain and contain a glimpse into Ruth?s otherwise jocular manner: January 09, 1974 Dear Constance, My thumb and I have emerged from the hospital in good order, stitches have been removed, and so on. I missed the truly foul weather which afflicted ?Christmas week ? blizzards with howling gales, followed by a thaw with buckets of rain, which then froze. Solid, irregular cakes of ice are still stuck to sidewalks, almost impossible to remove except with pickaxe ? salt and sand don?t seem to help much. But no fuel shortage so far ? just a lot of talk and an electric power failure or two (not unusual, as you know!). Occasionally informants presumed pain in spite of Ruth?s verbal denial. For example, one extended family member recalled her obvious stiffness and discomfort on being picked up from a bus station while travelling in the eastern United States. The informant suspected that Ruth had regular evening hot baths as an aid to comfort. During their last visit, Ruth had noticeable difficulty shifting from a sitting position to a standing position. The informant remarked that she did not ask Ruth about her pain, as she ?didn?t want her to be embarrassed.? Another informant, a former health professional, said that she took it for granted that Ruth was always in pain given the extent of her joint fusion and the presence of a pigeon-toed gait that was noticeably awkward and slow. She said that on one occasion, Ruth made reference to the cotton rolls developed by her podiatrist, noting the wonderful difference they 111 had made. She took this to mean that Ruth had been uncomfortable prior to their use. While Ruth did not talk of her pain, she also noted that Ruth regularly took Aspirins, typically two tablets with each meal. In addition, approximately four years prior to her death, Ruth remarked that her arthritis had ?flared up? while questioning whether or not a ?flu? and subsequent diarrhea had been contributing factors. The informant understood this to have meant that Ruth had been experiencing no pain but that it had re-occurred. Another family member remarked that she had accompanied Ruth when she had gone to purchase shoes. She had observed Ruth checking the fit against ?familiar pain spots? on her arthritic toes. In this regard, she thought that Ruth had accommodated to her pain. The above informant also remarked that she had the distinct impression that Ruth had been using alcohol as a form of pain management for a number of years prior to her death. In this regard, she noted that Ruth brought a bottle of wine while visiting, in spite of the fact that she herself was allergic to alcohol. In later life, Ruth took wine with her Aspirin during dinner while remarking that ?it was to help the Aspirins along.? In this regards, she thought that Ruth disguised her pain management as ?fun.? Numerous informants indicated that they thought that Ruth had used alcohol to manage pain, particularly in the latter years of her life. Elizabeth noted that the likelihood of her self-medicating with alcohol during the last months of her life was ?huge? given the direct acknowledgement of severe pain. Prior to this, Ruth continued to deflect any questions regarding her pain management with the remark that ?it was nothing that Tylenol couldn?t help.? Following a reading of the Medical Log, Elizabeth said that she had revised her opinion, stating that she now thought that Ruth had deliberately lied on occasion as to the nature of her pain experience. 112 Stevan, in particular, remarked on the difficulties inherent in comprehending the pain of another. He noted that ?others could see her disability but did not know her pain. How could you know if it hurts or doesn?t hurt?? When referencing the intolerable pain experienced by Ruth at the end of her life, Elizabeth remarked ?no one was privy to it,? ?no one understanding it.? There were a few noteworthy exceptions to Ruth?s characteristic privacy regarding personal difficulties. In this regard, Ruth openly discussed the stressors related to Harold?s deteriorating mental health while staying with a relative, known since childhood, on trips to oversee his care in the United States. On one occasion, Ruth disclosed that her brother was squandering his inheritance spending hundreds of dollars a month feeding stray dogs while living in a filthy trailer. His conversations were apparently bizarre, with a fixation on ?the government? and politics. However, Ruth also protected her extended family member from carrying any relational burden in connection with her brother. For example, Ruth?s relative offered to pay for a magazine subscription for her brother given the cheaper rates in the United States. Ruth had at first accepted the offer but later called and declined the offer. The informant thought that Ruth did not want to reveal his address and, in doing so, ?pass the burden? on to someone else. Immediately following the last visit to her brother, close to the last year of her life, Ruth was unusually candid with close friends regarding the nature of the sibling relationship. Ruth alluded to the lack of intimacy in their relationship, attributing the cause to his mental disorder, describing Harold as ?totally self-centered.? Towards the end of her life, Ruth travelled to the eastern States as she had felt obligated to provide evidence of her functional limitations given pressure from health 113 professionals to take on the fulltime care of her brother. Harold?s caregivers apparently insisted on the advance payment of his funeral expenses before she returned to Canada. Ruth described the trip to the eastern States as difficult given the heat and the exhaustion that came with walking. According to one informant, Ruth disclosed that she was ?grief-stricken? that she could not provide physical assistance to her brother. Interestingly, Ruth?s American relative had the contrasting impression that Ruth had experienced closure, that following her last visit, she had left feeling no guilt, reinforced by the belief that she had done everything that she could for a ?hopeless case.? There was another significant exception to Ruth?s characteristic emotional reserve regarding difficult life circumstances. In June 2002, Ruth cancelled a dinner date with a friend who was attending a conference in town. Ruth later phoned her friend and asked to be driven to the hospital the next morning given concerns regarding her health. The next day, her friend, with the assistance of Ruth?s neighbours, traced Ruth to a local hospital. Ruth had reportedly taken herself to the hospital in the middle of the night by taxi given persistent abdominal pain stemming from a sudden gastrointestinal haemorrhage. During her hospitalization, Ruth underwent intrusive procedures as part of the medical investigation, including a colonoscopy. These procedures would presumably have been painful for Ruth. When Elizabeth and Stevan subsequently visited Ruth following her release, Elizabeth remarked that she had never seen Ruth so angry. She reportedly told Elizabeth, as well as numerous other informants, that she would take pills rather than go through such ?indignities? again. Ruth was encouraged to speak of her hospital experience but refused. Elizabeth noted that she appeared ?physically weak? but ?not mentally fragile?. 114 Interestingly, Ruth did not appear to give any indication of her emotional distress during this period of hospitalization. A friend noted that Ruth?s self-presentation during visitation was of someone who felt secure and appreciative of the experience of being cared for. She had the impression that the staff enjoyed interacting with Ruth given her jocular manner. The friend also said that she felt ?choked? when she overheard the hospital social worker discussing discharge plans with Ruth. She said that Ruth minimized her difficulties and was adamant that she had no need of any home-based assistance. The friend said that she did not think that she had a right to interfere as Ruth had the right to live her life as she chose. There are numerous indicators that Ruth was philosophically in support of suicide as a valid and ?rational? option in the presence of unmitigated suffering. In this regard, Ruth was a member of the Right to Die with Dignity Society for 10 years prior to her death. Ruth also spoke with at least two informants about her support for assisted suicide for the terminally ill. At Ruth?s request, one informant shared information on assisted suicide that she was researching for a friend with a terminal illness. Numerous informants also regarded suicide as a rational form of self-deliverance from unmitigated suffering. Following Ruth?s suicide, a video copy of the book Final Exit: The practicalities of self-deliverance and assisted suicide for the dying by D. Humphry (1991) was discovered at the back of her closet. In addition, Ruth created a Living Will, with the request that no extraordinary measures be taken for life preservation. Ruth also planned her own funeral arrangements in advance through the Memorial Society. In particular, Ruth requested that her ashes be placed in a common area with no memorial service or obituary notice. Elizabeth had the impression 115 that such arrangements had come from a pragmatic life philosophy coupled with a desire to avoid unnecessary ?fuss? and expenditures. Following her hospitalization in June 2002, Ruth also made Elizabeth her legal health representative. In retrospect, Elizabeth wondered if Ruth had appointed her to such a role in order to ensure that no heroic means were taken in the event that her suicide attempt was not lethal. However, entries in the Will Log (dated July 22, 2002) indicate that Ruth was considering further revisions to her legal will in a few years time. This suggested that Ruth was not actively making plans for suicide in 2002 immediately following her hospitalization. There were numerous significant events in the months preceding Ruth?s decision to commit suicide. Three to four months prior to her death, Ruth disclosed an ear ache to friends. The pain eventually grew in severity, and encompassed one side of her head and neck. One informant, with a health care background, noted the significance of this disclosure as Ruth had never previously acknowledged or complained of pain. During a Christmas dinner in December 2002, Ruth acknowledged severe pain when questioned, as she was walking and holding her head with her hand. Ruth was reportedly encouraged to seek a referral to a rheumatologist that had been positively recommended by two friends. Ruth subsequently met with a locum physician covering for her general practitioner. Ruth was apparently told that nothing could be done for her pain but that she could try acupuncture. While the physician supported a referral to the rheumatologist, informants had the impression that his manner was brisk and impersonal. Approximately two weeks before the scheduled appointment with the rheumatologist, Ruth travelled by public transit to visit Elizabeth and Stevan, a mode of transportation insisted on by Ruth in spite of the time and energy involved. Ruth arrived looking very frail 116 and gaunt or ?skeletal.? Wrapped up in a large knitted hat and bundled in a second hand down-filled coat, Ruth appeared to have aged considerably. Throughout the two hour visit, Ruth acknowledged that she was in severe pain when questioned. Elizabeth noted that Ruth ingested numerous ?thimble? glasses of sherry and Tylenol, six pills within a two hour period, in an apparent effort to self-medicate. In retrospect, Elizabeth thought that Ruth?s frequent trips to the bathroom were spent weeping given the knowledge that the visit would likely be her last. Elizabeth also suspected that Ruth had avoided physical contact during the visit as she likely did not want to show emotion as ?her mind was made up.? In this regard, Ruth informed Elizabeth that there was no need to give her a calendar, a customary Christmas gift. She also told Elizabeth that she would not be celebrating her birthday in February. When Elizabeth attempted to cajole her into making birthday plans, Ruth replied in a jocular manner that she would be celebrating Saint Swither?s Day instead. The impression that Ruth had tentatively made up her mind to commit suicide by mid-January 2002 was also supported by another informant who disclosed that Ruth gave her a family heirloom, a cartoon by a French artist, that she thought would be valued by her descendents. However, it was also noteworthy that Ruth expressed generosity by relinquishing possessions throughout her entire life. Unfortunately, Ruth fell down by her bathroom entrance, hitting her head, on January 24, 2003, just prior to her appointment with a rheumatologist on January 27, 2003. The fall appeared to compound Ruth?s experience of pain. In this regard, a neighbour and a friend were concerned about internal injuries, or possible fractures, as Ruth reported pelvic pain 117 following the fall. According to a neighbour, Ruth had been falling frequently in her condominium prior to her death. Ruth refused to be taken to emergency department at the local hospital, noting that she had an upcoming appointment with the rheumatologist. This was considered typical of Ruth who minimized any physical difficulties or concerns. One informant wondered if the pending appointment had worked against Ruth receiving adequate care. She thought that Ruth would have likely been hospitalized if she had gone to the emergency department. Ruth spent her last few days lying down in her pyjamas as she waited for the scheduled appointment. During this time, Ruth received many expressions of concern and offers of assistance from significant others. A neighbour subsequently accompanied Ruth to her appointment with the rheumatologist. Ruth reportedly left the appointment with the understanding that nothing more could be done for her pain, though she was advised that she could try acupuncture if she wished. According to informants, Ruth was also left with the understanding that her pain would only get worse. Ruth?s neighbour was reportedly furious with the cursory physical examination and impersonal manner of the rheumatologist. In this regard, Ruth returned to the office, at her insistence, to have a superficial cut on her head, suffered in the recent fall, examined by the rheumatologist. The general consensus of several informants was that Ruth had suffered a significant loss of hope following her appointment with the rheumatologist. She was thought to have been prepared for suicide as an option for years but that her decision had likely been sudden. Numerous informants questioned whether or not Ruth?s pain had been sufficiently medically investigated. 118 In the two days following the above appointment, Ruth made a last phone call to several friends and extended family members. Numerous used tissues were found scattered around the couch by her phone following her death. Ruth?s conversations with others gave no indication of her suicidal thoughts or intentions. In spite of her painful and debilitated state, Ruth cleaned out her condo (i.e., cleared her fridge, removed garbage and more private personal items, such as underwear). Ruth apparently made certain that no one would be visiting her for a few days. Ruth left a detailed list of people to be notified in case of accident or ?sudden death? by her phone. She included an apology for her messy address book with the note that she had hoped to revise it. Ruth instructed the reader to notify Elizabeth before all others. The following comments were added beside Elizabeth?s name and number: ?Very helpful & devoted Cousin; knows about prearranged burial, etc. (files in paper file cabinet near bed; look also for cards in my wallet in purse, & bedside table. ?Memorial Soc. of ??, etc.) (re locker downstairs: Nothing of value: throw it all out). The list contained names of family members and friends, including housekeepers, with instructions as to who should be notified first within a family, and the need for extra care with those who were ill or under great stress. Professionals identified by Ruth as requiring contact included the head of the nursing home where her brother lived, Ruth?s podiatrist, attending physician, dentist, insurance broker, stockbroker and the executor of her will. On her calendar, Ruth also left instructions for opera tickets to be given away and a scheduled medical appointment that required cancellation. A note was left on Ruth?s bathroom door advising others against entry along with instructions to call the police. In her bathroom, Ruth arranged travel brochures, along with 119 specified instructions from travel agents, on the toilet seat and on the bathroom stool. These brochures were apparently intended for Elizabeth, who was bequeathed the contents of her condominium. Ruth had initiated previous conversations with Elizabeth as to where Elizabeth would want to travel if she had the financial means. Ruth then ingested a number of medications (specifics unknown), entered a tub full of water and slit her wrist. Two neighbours eventually became concerned about Ruth?s well-being as they had not seen her for a couple of days. They contacted a local friend of Ruth?s who had also been attempting to reach Ruth daily by phone. After consulting with the friend, the neighbours obtained a key and entered Ruth?s condominium. One neighbour, an elderly woman bent over with osteoarthritis, entered the bathroom without noticing the sign on the door prohibiting entry. At first, the neighbour, who had poor eyesight, wondered why Ruth was doing laundry in her tub. However, they quickly assessed the true nature of the situation, contacted the police and then, contacted Elizabeth. A suicide note was left for the police. A young constable eventually contacted Elizabeth and read the note over the phone. Elizabeth noticed that his voice was breaking with emotion as he read the note, a response that was much appreciated as it validated her own sorrow. Elizabeth quoted the suicide note from memory as follows: I, Ruth Williams, being of sound mind, have decided to take my own life. I have not been abetted or assisted by anyone. This is wholly my decision. I have been in severe pain since October and it is only getting worse. I am sorry for the distress this might cause my friends and family. Signed, Ruth Williams. When questioned regarding Ruth?s method of suicide, Elizabeth remarked that she did not think that Ruth had slit her wrist out of any sense of anger. Elizabeth viewed her actions as stemming from a steely determination that she be successful and ensure that she 120 not be left a ?vegetable.? Such action was viewed as inconsistent with Ruth?s otherwise aversive sensibilities towards the macabre in life. Elizabeth thought that Ruth had likely decided on such action based on research regarding effective suicide methods. Elizabeth remarked that Ruth was found in the bathtub, clad in her housecoat and nightie, as if she had been seeking sleep. Elizabeth also said that Ruth had bequeathed her body to science, a request that was subsequently refused given the condition of her body post-mortem. In early February 2003, approximately 20 extended family and friends gathered to remember Ruth as they sipped sherry together in her memory. A signed memorial book contained the following entries (among others): Ruth was a good friend, always cheerful, never complaining, as independent as I hope I can always be. Ruth, when we would meet at the door, would always ask me ?Do you think I have an honest face?? Yes, an honest, good, intelligent face ? and always a cheerful one. God Bless! Ruth, I?ll have to have a dinner every so often in your memory. Perhaps when I have a steak. You will be missed more than you know. Mum really misses you. Ruth was my dearest friend. Elizabeth also received numerous letters and e-mails from loved ones who were not able to attend the memorial gathering. Excerpts of three letters from extended family members are presented below: Dear Elizabeth, We know you will be meeting with Ruth?s friends on the 15th and we want to share our thoughts with them. Ruth was very dear to us. Although she was ??s father?s cousin, she was a contemporary of ours. When she visited with ? (father) and ? (mom) she called us ?the kids.? We were amazed to find out that she graduated from ? in the Class of 1951. I graduated in 1951 and Ben graduated in 1950. She was such fun to be with; she always had an amusing anecdote to add to the conversation. Before moving to ? she had 121 spent many years in ? caring for her mother who for about 10 years was bedridden. She found joy in helping others. Listening to the opera gave her great pleasure. She remembered birthdays and holidays, at first with cards and typewritten notes, and more recently, as typing became more difficult, with telephone calls. She was bright, witty, and at the same time self-effacing. She might be surprised at how much we all will miss her. We hope the ?get-together? goes well....Please let us know the address of the Opera Guild in which she participated. Thank you for all you are doing.. Joan and Ben Martin Dear Elizabeth, Thank you so very much for your thoughtful phone call - losing Ruth has saddened me deeply.? So I feel regret (trying not to feel guilt) - as our very dear daughter, ? said on the phone ??we always wish for one more last good-bye?.?I planned to phone Ruth this week from here?as I set up International rates after a call to her that cost me $35.00!... Perhaps Ruth has told you that I?m an amateur antique dealer with booth at MALL. A HOBBY! Some months I don?t sell to cover rent - but in Jan. I sold a very pretty silver overlay platter that I didn?t believe our children would want to inherit as it needed polishing, but I felt badly about parting with it - So it would cheer me up if you would use the amount towards your TEA party ? if Ruth were there it would go towards SHERRY! You are dear to assemble Ruth?s friends on her Birthday ? my thoughts will be with you ? wishing I could be with you all and saying thank you for being Ruth?s friends and supporters through the years. You made her life happy so many times. With love to all ? Agnes ?.P.S. If you don?t spend it all on ?SHERRY?- please send balance to OPERA or appropriate charity. This postage was on hand for my next letter to Ruth. Dear Elizabeth, Thank you for your E-mails to my sister and especially you courage in giving Sylvia a detailed description of Ruth?s choices. I feel quite comforted by knowing that Ruth?s ability to think and plan and make her own decisions continued to be so strong in the past six months. She did let me know the hospitalization had been devastating and she was sent home with pills and she was emphatically not going to tell me more. For her to end her life while she could seems to me perfectly compatible with who she was and how bravely she lived. 122 My thought was to gather the four of five of us in ? who knew Ruth at my house and we may yet do that?. Regards, Shirley Elizabeth described the process of dealing with the aftermath of the suicide as a ?service of love.? She spoke of spending time in Ruth?s condo surrounded by light and beauty, relishing the sense of Ruth?s presence. Likewise, Elizabeth spoke of a sense of consolation in knowing that she was thought of as Ruth committed suicide, as evidenced by the placement of the travel brochures. In this regard, Elizabeth thought of herself as being present during Ruth?s suicide, in a spite of a physical absence. Numerous informants remarked on the perceived determination and courage reflected in Ruth?s methodically planned suicide. Any guilt expressed was typically mitigated by the fact that Ruth had protected others from the knowledge of her intentions and by the reality that she would not have been otherwise dissuaded given her determination and will. As Stevan remarked, Ruth was ?the master of her ship.? Numerous informants also rested on the knowledge that their relationship had been loving and practically supportive and, therefore, had no regret. However, Stevan remarked that he had wished for an opportunity to tell Ruth that he understood her actions and that he loved her. He disclosed ?self-focused? anger over her death, noting the void brought by her absence. Likewise, another informant indicated that she had wished that she had known that she and Ruth were having their final conversation, even though she would have had no desire to stop her. She remarked that such desire created a paradox as a sudden death was wonderful for the suffering individual but more difficult for others as they missed the opportunity to say what they needed to say. At the same time, she remarked that it was more difficult for the individual to remain and suffer for the sake of others. Yet another informant 123 remarked that she wished that she had been aware that she was having a last conversation with Ruth as she had been preoccupied and had told Ruth that she would call her back. However, she reflected that Ruth might have preferred such a good-bye as it was typical of their relationship. In spite of assumed anxiety regarding her pain management, informants unanimously remarked on the absence of distress signalling depression prior to Ruth?s death. At the same time, Stevan ruefully remarked that he wondered how happy someone could be when ?you were falling to pieces and told that nothing could be done.? With the exception of one informant, who was not questioned directly, there was unanimous agreement that Ruth?s suicide had been rational. The excluded informant assumed that Ruth?s suicide had come from a confrontation with intense suffering, but, according to his spouse, was against suicide ?in principle.? At times, the impression of rationality appeared to be largely based on the informant?s experience of Ruth, as a consistently rational person, rather than on information regarding Ruth?s recent life circumstances. For example, one informant thought that her suicide was likely caused by financial concerns given recent stock market downturns. Another informant assumed that Ruth had simply ?had enough of coping.? On one occasion, an informant endorsed Ruth?s suicide as rational in spite of reported outraged when first informed. Those informants, who were aware of Ruth?s severe pain in the last few months of her life, accepted her suicide as a rational response to perceived hopelessness and unmitigated suffering. Clearly, Ruth?s absence did not prevent her from being a continued presence in the lives of numerous informants. For example, a quilt made in her memory was brought out at Christmas time as a tree skirt, a requested memento of Ruth invariable brought out memories 124 when it was handled, and a home garden provided a space for regular reflections regarding Ruth. Elizabeth?s and Stevan?s home was replete with Ruth?s possession (i.e., children?s books, pottery pieces and artwork). Stevan remarked that, if Elizabeth attempted to remove any of Ruth?s ?baubles,? he told her to ?leave Ruth alone.? Elizabeth spoke of frequently feeling Ruth?s presence, through her possessions, and that it made her ?smile.? Reflections on A Portrait of Ruth: Through the Lens of Family and Friends According to informants, Ruth?s early childhood was marked by a nurturing home environment, as well as enhanced learning opportunities. Childhood photographs and an inscribed children?s book attested to an affectionate relationship between Ruth and her parents. There was no reported history of childhood trauma, abuse or neglect, nor was there any history of parental psychiatric illness or substance abuse, marking the absence of identified risk factors associated with adult suicide in general (Lester &Tallmer, 1994). While there was little information available regarding Ruth?s brother Harold, parental academic aspirations for their son suggested an adult onset to his mental illness. However, as an adult, Ruth experienced significant family-related stress, particularly within her role as a caretaker to her ailing mother. On one occasion, Ruth confirmed the impressions of numerous informants that her mother had been excessively demanding while under her care. Likewise, Ruth occasionally alluded to stress within her role as next of kin and overseer of her brother?s care in the eastern United States. Towards the end of her life, Ruth disclosed distress that she was functionally unable to be Harold?s fulltime caregiver, a response that appeared reactive to pressure by health-care professions to take on the role. However, stress within the sibling relationship also appeared mitigated by Ruth?s realistic 125 expectations and strong interpersonal boundaries. This was particularly evident when Ruth asked her brother to leave their father?s funeral, given his reported bizarre behaviour. Ruth?s experience of interpersonal stress was particularly relevant given extensive research has linked interpersonal stress with increased markers of immunostimulatory activity and disease activity as well as a depressed mood for those with rheumatoid arthritis (Affleck et al., 1994; Zautra et al., 1994; Zautra et al. 1998; Zautra et al., 1997). Likewise, Ruth?s experience of interpersonal support was relevant, given that supportive and affectionate spouses, high levels of general support, and positive interpersonal events have all been found to have a buffering effect on the adverse effects of minor stress, particularly those that are interpersonal in nature (Affleck et al, 1994; Zautra et al., 1998; Zautra & Smith, 2001). However, the actual import of interpersonal stress on Ruth?s disease process and her lived experience remains unknown. According to archival material, Ruth first noted arthritic changes in her hands at the age of 33. In this regard, the estimated age of onset and Ruth?s severe disease presentation, as evidenced in progressive hand and foot deformities and associated disability, appeared consistent with gender reported differences (Anderson et al., 2000; Weyand et al., 1998). Likewise, Ruth appeared to fit the profile of those with rheumatoid arthritis (typically 50%) who are work disabled within 10 years of diagnosis (Brooks, 1997, as cited in Woolf & Pfleger, 2003) given an early retirement at approximately 40 years of age. There was no evidence that Ruth grappled with the effect of psychodynamic theories of causation that were prevalent during the time of her diagnosis in 1971 (Lerman, 1987; Shafii, 1973; Spergel et al., 1978), unlike the earlier recounted experiences of Grace Stuart (1953). Ironically, Ruth may have inadvertently been protected from such psycho-126 pathologizing given diagnostic uncertainty from 1962 to 1971. By the late 1970?s, research had challenged psychodynamic theories of causation, finding no differences between the MMPI personality profiles of those with rheumatoid arthritis when contrasted with other chronic illnesses (Spergel et al., 1978). Rather, Ruth appeared to use a scientific, rational lens, looking for physical precedents, such as flu-like symptoms, as precursors to an inflammatory process. In regards to Ruth?s psychological profile, informants consistently portrayed Ruth as a woman who did not grapple with undue anxiety or depressive symptoms throughout her life. These impressions were unanimous amongst informants, whether they had known Ruth within the past 10 years or since childhood. Ruth did not exhibit the depressive symptoms identified by numerous researchers as typical of the chronic illness experience associated with rheumatoid arthritis (Dildy, 1996; Iaguinta & Larrabee, 2004; Shaul, 1995), although the reported incidence rates for depression vary significantly from 15% to 42% (Harrison, 2003). Ruth?s psychological robustness may have been associated with Ruth?s disclosures of minimal pain, until the later months of her life, given extensive research which has documented the reciprocal nature between measures of anxiety, depression and pain (Gatchel et al., 2007; Huyser & Parker, 1999; Keefe et al., 2001). Likewise, Ruth did not express anger or grief regarding the multiple losses she had experienced, an emotional response that researchers have identified as common within the experience of debilitating chronic illness and rheumatoid arthritis, in particular (Bury, 1982; Charmaz, 1982, 1995; Dildy, 1996; Iaquinta, & Larrabee, 2004). Clearly, Ruth experienced significant losses, both tangible and intangible, throughout her life, including the loss of physical comfort and predictability, the loss of functional 127 abilities, and the loss of a vocational identity. In regards to the latter, informants were unaware of the impact of the disease process, such as progressive disability, on Ruth?s decision to retire while assuming that she had quit work to care for her mother. On occasion, Ruth positioned her vocational loss in positive terms, as in the remark that she was relieved to not get up in the morning, when speaking with a godchild. Ruth did not appear to voice regrets if she thought that such statements would evoke sadness in others. Ruth was more forthcoming with regret regarding the loss of her vocation with two informants who were academics, perhaps understanding that such reflection would be expected. Ruth also appeared adept at masking her emotions with others, with one informant remarking on her ?formidable defences,? or emotional control, particularly in response to situational stress. In this regard, one informant remarked that Ruth appeared pleasant and appreciative with health providers while hospitalized in May-June 2002. However, following discharge, Ruth expressed considerable anger and feelings of degradation to Elizabeth (the main informant) and her husband, Stevan, with the remark that she preferred suicide to such an experience in the future. Such feelings of degradation, particularly in regards to the loss of privacy, were consistent with the experiences of those with rheumatoid arthritis that have minimal hospital experience (Edwards et al., 2001). Most significantly, during the later weeks of Ruth?s life, informants and health care providers were unaware of the extent of Ruth?s hopelessness and despair regarding unremitting severe pain. However, the consistency of reports of Ruth?s emotional stability throughout her life suggested a psychological robustness that persisted until the last months of her life. 128 In this regard, Ruth typically exemplified many of the characteristics that researchers have associated with well-being for those with rheumatoid arthritis, including a rational cognitive style, an internal locus of control, a general attitude of optimism and a strong belief in self-efficacy, particularly in regards to symptom management and problem-solving (Affleck et al., 1987; Flor & Turk, 1988; Keefe et al., 1989; Nagyova et al., 2005; Smith et al., 1994; Treharne et al., 2005; van Lankeveld et al., 1994; Walker et al., 2004; Zautra & Manne, 1992). As such, Ruth?s active coping style presumably protected her from greater functional disability, depression and pain given research findings that have associated such adverse effects with a more passive coping style (Brown & Nicassio, 1987; Flor & Turk, 1988; Covic et al., 2003; Covic et al., 2006; Keefe et al., 1989; Smith & Wallston, 1992; van Lankveld et al., 1994). Likewise, Ruth?s life passions (or aesthetic spirituality) fostered a positive life engagement while presumably marginalizing the effect of functional disabilities and health-related concerns, given research linking measures of spiritual transcendence to positive affect and enhanced health perceptions (Bartlett et al., 2003) Ruth managed symptoms of pain, fatigue and disability predominantly through the use of accommodation, active remediation and perseverance, mirroring the strategies favoured by others with an established disease process, including an apparent reluctance to seek social assistance to manage pain and fatigue (Katz, 2005). Likewise, Ruth favoured perseverance, rather than accommodation, particularly in her pursuit of valued activities, such as travel, music-related activities and socializing with extended family members and friends. Informants observed that Ruth persisted in these activities in spite of a large symptom burden (i.e., overwhelming fatigue, intermittent diarrhea, and severe deformities with associated biomechanical pain). The presence of such ?zealous perseverance,? (p. 283) 129 in the face of disability and deformity, has been similarly identified within the lived experience of rheumatoid arthritis (Iaquinta & Larrabee, 2004). According to Katz (2005), for those with an established disease process, perseverance, rather than accommodation, was found to be the coping strategy most associated with the maintenance of function over time. While Ruth?s fierce independence and determination likely preserved her functionality, these attributes may also have protected Ruth against the onset of depression that has been found to be associated with the loss of valued activities (Katz & Yalin, 2001; Neugebauer et al., 2003). Ruth?s appeared to successfully adapt to her chronic illness in that she was ?living with an illness without living solely for it? (Charmaz, 1995, p. 5). Nursing researchers Plach et al. (2004) identified embodiment as central to understanding the lived experience of those with established rheumatoid arthritis. In particular, Plach et al. (2004) identified three predominant themes within the experience of corporeality (or being one?s body) including relating to a noncompliant body, a body out of synch, and a private body made public, all of which appeared to be relevant to Ruth?s experience. For example, like research participants (Plach et al. 2004), Ruth meticulously prepared for ordinary tasks given the difficulties associated with a body made non-compliant through the presence of deformities, pain and, presumably, pervasive fatigue. As noted by Corbin and Strauss (1987), the restructuring of ?clock time? (p. 261) around the requirements and performance of the body, underlined the significance of the body as the medium through which life was constructed and experienced. Ruth?s gait and manual dexterity also became increasingly awkward or non-compliant over time, a body that was experienced as out of synch with able bodied peers, as was consistent with research participants (Plach et al., 2004). Ruth?s humourous, yet disparaging 130 comments regarding the appearance of her hands also underlined the humiliating effect of inescapable public exposure that has been associated with such deformities (Plach et al. 2004). As with research participants (Plach et al., 2004), Ruth kept ?pain, impairment, and changing appearance hidden from public view. Smiling through discomfort and acting normal was the goal? (p. 145). Corbin and Strauss (1987) have similarly identified the ways in which the chronically ill conceal or minimize the negative aspects of their body?s appearance and performance. Ruth?s success at concealment was evident in Elizabeth?s (main informant), disclosure that she became aware of the condition of Ruth?s feet from reading the Medical Log, in spite of a close relationship that spanned 30 years. Ruth?s decision to appoint Elizabeth as her health care representative spoke of an otherwise established trust and ease within their relationship. Ruth?s description of herself as a decrepit senior citizen, or as prematurely aging, was also consistent with the self-appraisal of others with rheumatoid arthritis (Bury, 1982; 1988; Iaquinta & Larrabee, 2004; Plach et al., 2004). Likewise, Ruth?s humorous motto ?Onward, Downward? reflected a consciousness awareness of the ongoing physical decline that has been found to permeate the experience of others with established rheumatoid arthritis (Minnock et al., 2003). The impact of embodiment was particularly relevant for Ruth?s end of life experiences, given that researchers have questioned the appropriateness of various cognitive behavioural strategies for those with a severe disease process (Affleck et al., 1987; Affleck et al., 1992; Astin et al., 2002; Erdal & Zautra, 1995; Schiaffino et al., 1991; Treharne et al., 2005). For example, while Ruth?s high self-efficacy and active problem-orientated approach may have fostered optimal adaptation throughout life, the persistent application of these 131 attributes in the presence of severe pain may have fostered greater mood disturbance given research that has found such an association (Schiaffino et al., 1991). However, the adaptive value of acceptance and the relinquishment of control has not been established within the field of rheumatoid arthritis (Zautra & Manne, 1992), with Gatchel et al. (2007) cautioning that such strategies may foster the development of depression for those with chronic pain. For example, van Lankeveld et al. (1994) found that acceptance was not associated with well-being for those with an established disease who were coping with challenges related to dependency. While Charmaz (1995) identified the relinquishment of control as the final stage of adaptation within the experience of chronic illness, for Ruth, the relinquishment of control, particularly in the pursuit of pain management, brought forward suicide as an option. As Ruth was a longstanding member of the Die with Dignity Society, suicide was presumably viewed as a rational choice, given the presence of unmitigated suffering (and possible concerns about increased dependency, as suspected by numerous informants). Ruth?s permissive attitude towards suicide mirrored the widespread societal acceptance of elderly suicide as potentially rational (Humphry, 1991; Kleepsies et al., 2000; Ogden & Young, 1998; Rosenfeld, 2004; Werth & Corbin, 1995), an endorsement that extends to global issues such as physical debilitation and the loss of independence, control and dignity (Back et al., 1996; Ganzini et al., 2000; Sorenson, 1991; Wilson et al., 2007). According to the majority of informants, Ruth?s permissive attitude towards suicide mirrored the rationalism that defined the coping strategies employed throughout her life. The western cultural values of independence, privacy and family autonomy (Charmaz, 1983) were implicit within Ruth?s style of coping with rheumatoid arthritis. In 132 psychological terms, Ruth?s core-ordering processes (Mahoney, 1991), particularly in connection with coping with illness-related stressors, was perhaps crystallized in her statement that ?I must do it myself.? This assertion also implied a strong Protestant work ethic, identified by Charmaz (1983) as a western value that frequently hinders the acceptance of external support within the experience of chronic illness. According to Elizabeth, the main informant, Ruth?s experience of care-taking her bedridden mother, as well as Ruth?s observation of the adverse effects of institutional life on Elizabeth?s mother, further consolidated the determination to avoid such dependency. Ruth was well informed of various residential care facilities in her community; having investigated such resources on behalf of another individual. However, Ruth adamantly declined additional home-based assistance on her own behalf, whether offered through an extended family member or through a health professional, as was witnessed during a hospitalization in May-June 2002. According to the impressions of numerous informants, increased dependency and institutional living were not conducive with Ruth?s construction of a meaningful existence. While Ruth?s ?fierce independence? was a source of frustration for significant others, given their concern and desire to reciprocate kindness, her coping style was also viewed as exemplary and courageous. In this regard, Ruth?s social network shared Ruth?s Anglo-Saxon values and preferred ways of being. As such, others reflected a deep appreciation for Ruth?s interpersonal style which was presumably co-constructive of Ruth?s preferred lived narrative (Burr, 1995; Polkinghorne, 1988), particularly within the process of meaning-making associated with chronic illness (Bury, 2001). According to Bury (1982, 1988), the legitimization and negotiation of support is fraught with ambiguity for those with rheumatoid arthritis, given the constraints of social life, 133 implicit behavioural expectations and the cultural connotations of disability and illness that infuse the process. For example, the acceptance of the need for increased instrumental assistance would have socially redefined Ruth?s disability, and, according to Bury (1988), increased social anxiety within all parties, given the lack of cultural role prescriptions to guide behaviour. Likewise, an inability to sufficiently reciprocate assistance may constrain acceptance, given the otherwise negative effects on self-esteem (Revenson, 1993). According to van Lankveld (1994), consideration (i.e., making self useful or not asking too much from one person) was the coping strategy most positively associated with well-being for those with an established disease process in positions of dependency. The negotiation of support is particularly difficult within the experience of rheumatoid arthritis, given that symptoms may be inconsistent, unpredictable and marked by shifting treatment requirements (Revenson, 1993). Ruth?s general reticence to accept instrumental or emotional support from others was consistent with findings by numerous researchers, both in the experience of pain (Katz, 2005; Plach et al., 2004) and fatigue (Katz, 2005; Hewlett et al., 2005). Likewise, Melanson and Downe-Wamboldt (2003) found that the older adult with an established disease process (average age of 75; average disease duration 18 years) were more likely to use problem-oriented or palliative strategies before support when coping with illness-related stressors. Research by Hewlett et al (2005), in particular, underlined the cultural influence of an Anglo-Saxon background in such reticence, referencing the need to maintain stoicism, even in the presence of overwhelming and debilitating fatigue. According to Iaquinta and Larrabee (2004), the maintenance of privacy regarding disease activity may also be associated with 134 past untoward reactions, or, as found by Bury (1988), motivated by a desire to avoid unwanted interpersonal effects, such as burdening others or unwanted caretaking. Given the above cultural and interpersonal dynamics, Ruth?s significant others were constrained in their ability to directly advocate on Ruth?s behalf, as such action would presumably have been viewed as disrespectful. For example, in spite of a health care background, an informant did not speak to the hospital social worker when Ruth declined home-based assistance as part of discharge planning as such actions were viewed as an infringement on Ruth?s ability to live life as she chose. In addition, informants occasionally questioned the adequacy of Ruth?s medical care but felt constrained in their ability to intervene directly. This relational dilemma was cogently referenced when one informant remarked that Ruth lacked an advocate in the form of a daughter. Within a western worldview, direct advocacy was not seen as an infringement of personal boundaries when performed by immediate family members, the accepted and rightful position of a daughter, in particular. The above informant?s comments perceptively highlighted the increased vulnerability of the single, elderly and infirm within western culture, particularly given Scarry (1985) observations linking social advocacy to the allocation of cultural resources. As noted by Turner (1987), the chronic symptoms of the elderly patient are otherwise frequently medically under treated because of an implicit attitude of normalization towards the aging process. The provision of health-related services for the elderly also occurs within a delivery system already biased towards acute, rather than chronic care (Charmaz, 1983). While significant others were marginalized within Ruth?s health care, an extensive support network provided assistance and advocacy, albeit in an indirect fashion. In this 135 regard, Ruth?s experience was inconsistent with research linking a restricted social life to a debilitating chronic illness (Charmaz, 1983, 1995) and rheumatoid arthritis, in particular (Bury, 1982; Fritzpatrick et al., 1988). Such assistance included the occasional provision of transportation to medical appointments as well as unobtrusive assistance, such as instrumental aids in the form of gifts, shared research and recommendations for resources. Ruth?s extensive engagement with others continued throughout her entire life. For example, during the last few days of life, Ruth sought a referral to a rheumatologist recommended by friends, a neighbour offered transportation to the appointment while another friend made a follow-up phone call. Prior to her suicide, Ruth made a final phone call to numerous individuals and wrote an extensive list regarding the notification of others, including professionals, friends and family members. Ruth?s body was eventually discovered by two neighbours and a friend who were alarmed by her absence and lack of response to phone calls in the preceding days. An extended family member in the United States also disclosed that she had unsuccessfully tried to contact Ruth during the same time period. Ruth was not only socially engaged; she was actively valued and appreciated. Informants gave mixed impressions of Ruth?s pain, with several reporting that Ruth experienced minimal or no pain, while others assumed pain based on physical manifestations and behavioural indicators, such as a laboured and awkward gait, the need for orthopaedic shoes, the presence of severe hand deformities and the regular ingestion of Aspirin. Different impressions were perhaps reflective of the difficulties in accurately portraying a disease process that may have been inconsistent in presentation and unpredictable in nature (Newman & Revenson, 1993; ACR, 2002). However, informants consistently reported that Ruth did not complain of pain until the last couple of months of her life, in spite of many 136 invitations to speak of her experience with pain. In this regard, Ruth may have had periods when she was relatively pain free, she may have minimized or otherwise reframed pain, or she may have deliberately denied the existence of pain, an alternative suggested by Elizabeth, following a reading of the Medical Log. Such denial, or minimization, may have been motivated by a desire to preserve privacy and maintain autonomy while also protecting others from vicarious suffering, an implicit emotional burden. As such, Ruth?s reported pain experience appeared to contradict research which has identified pain as a predominant symptomatic stressor for those with established arthritis (Melanson & Downe-Wamboldt; Minnock et al., 2003). The nature of Ruth?s pain experience was particularly relevant given extensive research findings that have identified a reciprocal nature between affect and pain (Gatchel et al., 2007; Huyser & Parker, 1999; Keefe et al., 2001), with high levels of pain, in particular, associated with higher levels of anxiety, depression and lessened self-esteem and poorer adjustment (Nagyova et al., 2005) and well-being (van Lankveld et al., 1994). Research, using a longitudinal design, has also found that higher pain levels were predictive of higher depression over time (Brown, 1990; Katz & Yalin, 1993; Schiaffiano et al., 1991) although the nature of the relationship between pain, depression and coping remains controversial (Parker & Wright, 1995). Ruth?s lessened experience of pain, if accurately portrayed, may have contributed towards the maintenance of psychological well-being within the experience of rheumatoid arthritis throughout her life. Numerous informants were aware that Ruth?s pain had become severe and unremitting during the last months of her life. However, Stevan, in particular, raised a central ethical dilemma in the comprehension of Ruth?s pain, noting that her disability could be observed and yet her pain remained invisible. Likewise, Elizabeth remarked that no one 137 was ?privy? or ?understanding? of the extent of Ruth?s pain at the end of her life. Ruth, like Grace Stuart (1953), essentially lived in a private world of pain. Pain theorist, Scarry (1985) has articulated the attributes of severe pain which jeopardize both understanding and compassion within community. According to Scarry (1985), the most frightening attribute of pain is its inherent resistance to objectification through language, essentially rendering pain unknown, and even denied, by others, even when totalizing the consciousness of the sufferer. According to Scarry (1985), severe relentless pain may be likened to torture in its totalizing effect on the person and its ability to be world destroying. Given the collapse of the world, self and voice, Scarry (1985) highlighted the moral responsibility of others in providing advocacy, or, compassionate witness, in order to maintain hope. According to Scarry (1985): An act of human contact and concern, whether occurring here or in private contexts of sympathy, provides the hurt person with worldly self-extension: in acknowledgement and expressing another person?s pain, or in articulating one of his nonbodily concerns while he is unable to, one human being who is well and free willingly turns himself into an image of the other?s psychic or sentient claims, an image existing in the space outside the sufferer?s body, projected out into the world and held there intact by that person?s powers until the sufferer himself regains his own powers of self-extension. By holding that world in place, or by giving the pain a place in the world, sympathy lessens the power of sickness and pain, counteracts the force with which a person in great pain or sickness can be swallowed alive by the body (p. 50). 138 The insights of Scarry (1985) mirror those of Williams (1999) in the recognition of the embodied self as central to an ethical and compassionate response to suffering by others. In other words, shared sentience enables human beings to act beyond their own narcissist concerns. Likewise, Corbin and Strauss (1987) identified embodiment as essential to understanding the narrative reconstructive process inherent within the chronic illness experience. As is highly relevant to Ruth?s experience, the authors identify a persistent downward health trajectory as a force that shatters narrative coherence while potentiating feelings of hopelessness and despair (Corbin & Strauss, 1987). According to Dildy (1996), a lack of pain control constrains the development of positive or transformative meaning-making within the experience of suffering associated with rheumatoid arthritis. Charmaz (1983) has also identified physical improvement and stabilization as preconditions for any benefit-finding within the experience of loss associated with a debilitating chronic illness. According to Melanson and Downe-Wamboldt (2003), very few older adults with established rheumatoid arthritis report any benefit from the illness related stressors associated with rheumatoid arthritis. In this regard, Ruth?s core illness narrative appeared to shift from that of a ?quest? narrative, marked by a search for meaning and personal change, to that of a ?chaos? narrative, marked by ongoing chaos and a lack of narrative coherence (Frank, 1995). As such, Ruth appeared to enter an existential crisis regarding the value and meaning of continued existence. For Ruth, principles of personal control, independence and autonomy would, presumably, have been central to any constructions of a meaningful future. However, the presence of severe pain highlighted the need for external resources outside of self, 139 whether in the form of an advocate (Scarry, 1985) or an empathetic witness to her suffering (Frank, 1995; Kleinman, 1988; Scarry 1985). However, given a characteristic preference for independence, autonomy and privacy, Ruth would presumably have refused direct advocacy, particularly if offered by friends and extended family members, just as she had refused home based assistance as part of discharge planning while an inpatient in May-June 2002. Informants who accompanied Ruth during the last months of her life unanimously thought that Ruth was demoralized and had suffered a complete loss of hope following her consultation with the rheumatologist in the last week of life. While Ruth entered the appointment with some hope, fostered by two individuals who spoke highly of the recommended rheumatologist, she left with the understanding that nothing more could be done for her pain and that it would only worsen over time. Dialogue with the rheumatologist reportedly consolidated impressions of hopelessness established through prior conversations with the locum attending physician. While the exact nature of the dialogue remains unknown, Ruth left the rheumatologist?s office with an imagined future that was apparently worse than death. While Ruth?s interactions with physicians during the last month of life were thought to have fuelled hopelessness, their perceived curt and impersonal manner also presumably fuelled one of Ruth?s greatest fears, that she was becoming a burden. In this regard, Ruth was immediately sent back to the rheumatologist following consultation, given anger on the part of a companion that an obvious head wound (suffered in a recent fall) had not been attended to. Numerous informants thought that Ruth had committed suicide as she likely predicted increased dependency in the near future. As such, Ruth?s motivational intent appeared 140 consistent with the identified causes for elderly suicide in general, including physical illness, functional limitations, and a lack of independence or threat of institutionalization as well as multiple losses, whether present or foreseen (Conwell, 1997; Conwell et al., 2002; Lester & Tallmer, 1994). In the later months of life, Ruth grappled with numerous physical challenges, including difficulties maintaining control and independence as well as pain management within the context of significant physical limitations, all identified as predominant illness-related stressors for older adults with an established rheumatoid arthritis (Melanson & Downe-Wamboldt, 2003). Given extensive research findings of the reciprocal interactions between pain, anxiety and depression (Gatchel et al., 2007; Huyser & Parker, 1999; Keefe et al., 2001), the presence of severe pain presumably heightened any underlying affective distress in a reciprocal fashion. Ruth?s apparent use of alcohol to self-medicate, albeit in small amounts, particularly at the end of her life, may also have contributed towards a depressive state. While research has commonly identified a unipolar depressive episode prior to suicide in the elderly (Conwell & Brent, 1995; Conwell et al., 2002) the relevance of depression in Ruth?s experience remains unknown. However, there were also various behavioural indicators that suggested the absence of a significant depression in the later months and weeks of Ruth?s life. For example, Ruth remained both socially engaged and proactive in her pursuit of pain relief. Likewise, Ruth?s attendance to her social world, just prior to her suicide, suggested a consciousness of her personal worth to others. While researchers have questioned the role of depression and hopelessness as mediators between pain and the desire for a hastened death (Lester & Tallmer, 1994; 141 Rosenfeld, 2004), Ruth?s experience underlined the role of hopelessness in her decision to commit suicide. Hopelessness, as an integral part of depression, has been found to be independently predictive of suicidal ideation and completed suicide in psychiatric adult populations (Beck et al., 1989; Beck et al., 1975; Beck et al., 1993; Beck et al., 1985) and as predictive of suicidal ideation and completed suicide in the elderly (Hill, et al., 1988; Rifai, et al., 1994; Ross et al., 1990). Likewise, research has linked hopelessness, or a lack of purpose, with suicidal ideation for palliative patients with a terminal illness (Chochinov, et al., 1998; Wilson et al., 2007). Research investigating requests for physician assisted suicide or euthanasia have also found predominant motivations were value-driven, such as a loss of control, independence and dignity rather than symptomatic in nature (Back et al., 1996; Ganzini et al., 2000). However, Wilson et al. (2007) found that palliative patients, who indicated a desire for a hastened death (if legally permitted), had a greater number of symptoms and psychosocial concerns in contrast to palliative patient who did not desire a hastened death. The top five identified symptoms and concerns underlying the desire for a hastened death included: weakness, a desire for death, general malaise, drowsiness and concerns regarding being a burden to others. In addition, the desire for a hastened death was associated with lower religiosity, reduced functional status, as well as higher degrees of depression and hopelessness in contrast with those who did not desire a hastened death (Wilson et al., 2007). Rosenfeld (2004) has suggested that a large overall symptom burden, rather than depression, may be the overriding determinant in the elderly desire for a hastened death. Physicians have a seminal role in regards to alleviating such burdens, while also situated to engender hope for those in despair of a meaningful future (Groopman, 2004). For example, 142 Ganzini et al. (2000) found that 46% of requests for physician-assisted suicide were withdrawn following substantial medical intervention, whether symptomatic relief or psychosocial in nature. Likewise, Wilson et al. (2007) reported that 9.5% of palliative patients indicated that they would have previously requested a hastened death (if legal) but they had changed their minds following the resolution of physical and psychological concerns. Ruth carried a large overall symptom burden, including chronic and intermittent acute pain, recurrent gastro-intestinal disturbances, functional limitations and overwhelming fatigue. However, Ruth appeared to cope adequately with all of the above symptoms, for numerous years, until she experienced the additional burden of severe and unremitting pain. Ruth had contact with two primary care providers (a podiatrist and locum attending physician) within the month preceding her suicide, as well as contact with a consulting rheumatologist (a self-initiated referral) within a week of her death. This finding was consistent with the reported contact rates preceding elderly suicide, with 62% having seen a primary care physician in the 30 days prior to suicide and 36% having seen a primary care physician within a week of suicide (Conwell, 1997). As was characteristic of elderly suicides in general (Conwell et al., 2002), Ruth was very determined in her intent, avoiding detection while engaged in meticulous planning. In comparison to the demographic characteristics of women with rheumatoid arthritis who have completed suicide (Timonen et al., 2003), Ruth?s suicide was similar given her older age (as compared to female suicides with neither osteoarthritis nor rheumatoid arthritis), the existence of a longer disease process (as compared with male suicides with rheumatoid arthritis) and her use of a violent method, the latter characteristic mirroring 90% 143 of women with rheumatoid arthritis who have committed suicide. However, Ruth also appeared to significantly differ in that she had no prior history of depression, in contrast to 90% of women with rheumatoid arthritis who have committed suicide, with 50% also having made a prior suicide attempt (Timonen et al., 2003). Ruth?s suicide note, with its direct reference to unbearable suffering and instructions intended to protect others was also characteristic of elderly suicide notes (Lester & Tallmer, 1994). Analysis of the content of Ruth?s suicide note was consistent with Leenaars? (2003) analysis of a terminally ill cancer patient in regards to motivational intent, including the desire to avoid unbearable psychological pain, a cognitive constriction focused on pain, unmet needs regarding control, traumatic injury (i.e., progressive, severe and unremitting pain) and an unwillingness to accept life circumstances coupled with a desire to escape through death. Using Freud?s physician-assisted suicide as an exemplar, Leenaars (2003), suggested that such deaths be described as a ?dignified death,? ?assisted death,? or a ?self-chosen death? (p.10) rather than suicide. Likewise, when Ruth left final instructions to others in case of ?accident? or ?sudden death,? she appeared to position her actions within the euphemism of ?hastened death? rather than suicide, a term referenced by Humphry (1991). A video recording based on the book Final Exit: The practicalities of self-deliverance and assisted suicide for the dying by D. Humphry (1991), was discovered at the back of Ruth?s closet following her death. Ruth apparently followed numerous recommendations outlined by Humphry (1991) prior to her suicide. For example, Ruth spoke to a general practitioner and a rheumatologist prior to action, determining that she was a ?hopeless case,? (p.114) particularly in regards to pain remediation (Humphry, 1991). In the preceding 144 months, Ruth also created a revised legal will, naming an institutional executor and identified Elizabeth as her legal health care representative (in addition to a pre-existent living will). In addition, Ruth left directions regarding burial wishes and public notification with the Memorial Society. As recommended by Humphry (1991), Ruth also informed significant others that she was a member of the Die with Dignity Society, an organization that advocates for rational suicide as a legal option. In particular, Ruth informed numerous informants approximately six months prior to death that she would choose suicide rather than endure the indignities of re-hospitalization. In her suicide note, Ruth also protected others against recriminations by clearly noting that she was solely responsible for taking her own life, and that she had not been abetted or assisted in any way. As recommended by Humphry (1991), Ruth also ensured that there were no scheduled home visits in the hours and days following her suicide attempt and she left her phone on the hook, so as to not alarm others. In summary, Ruth planned meticulously and left ?nothing to chance? (Humphry, 1991, p. 115). Informants were unanimous in their perception that Ruth?s suicide was rational, with the exception of one informant who was not directly questioned. Informants who were not aware of Ruth?s severe end of life pain appeared to make this assumption based on Ruth?s characteristic rational approach to life. Notions of rationality may also have been constructed retrospectively given that one informant was reported by another to have been initially outraged by Ruth?s actions but later described Ruth?s suicide as rational when interviewed. As such, notions of rationality appeared to be based on the subjective and retrospective lens of the individual, rather than based on objective criterion. In this regard, informants chose a lens which focused on stories of rationality rather than those which might have raised 145 ambiguity or contradiction. For example, while numerous informants questioned the adequacy of pain management, this issue was not raised when constructing notions of rationality within Ruth?s suicide. Ruth was surrounded by a community of internalized others (Tomm, Hoyt & Madigan, 1998) who implicitly, and occasionally explicitly, endorsed her philosophical views regarding assisted suicide and euthanasia, particularly within the context of unremitting suffering. Such social endorsement would presumably have led Ruth to believe that significant others would understand her decision, even while she enacted her suicide, thereby mediating concerns of a painful, social aftermath. However, philosophical conversations with others, regarding assisted suicide and euthanasia, appeared to have been largely intellectual in nature. There was no apparent dialogue regarding the interpersonal meaning of such a hypothetical death, particularly within Ruth?s life circumstances and relationships. As such, Ruth?s social world appeared to co-construct notions of rational suicide as outside of the interpersonal realm, a social exclusion typically reflected within the pro-choice discourse (Maris et al., 2000). However, one informant noted the significance of the other in determining the morality of a self-chosen death. While suffering with the end stages of terminal cancer, he remarked that Ruth?s suicide was highly rational but that he would not consider such actions in his own circumstances as he had dependent children. In comparison, Ruth was not hindered by pragmatic or ethical concerns created by the existence of dependents. Another informant remarked that Ruth had fulfilled filial obligations prior to her death, including arrangements for Harold?s future funeral expenses, apparently completed during her last visit in April-May 2001. 146 The situated interpersonal meaning of Ruth?s philosophical views regarding rational suicide was likely avoided for various reasons. Ruth characteristically avoided emotionally-laden topics while others typically did not pry out of respect for Ruth?s preferred way of being. In this regard, Ruth and her significant others were constrained by co-constructed meanings of interpersonal intimacy, a dialogic process of meaning-making, as described by Shotter (1993). Secondly, informants were aware of Ruth?s determination to be solely responsible for her life, while being a burden to no one. Ruth viewed as a woman who could not be dissuaded from a proposed course of action. However, the most poignant reason was perhaps stated by an informant on the implicit unfairness of asking someone to extend their suffering for the sake of others. At the end of her life, others accepted Ruth?s appraisal that her situation was indeed hopeless. According to Scarry (1985), intense physical pain ?always mimes death? (p. 31). The collapse of the voice, self and world of the sufferer is coupled with an overwhelming desire to escape the body?s aversive reality, an existential reality where murder and suicide converge (Scarry, 1985). In this regard, Ruth?s suicide may be viewed as an escape from pain, passivity and reality constriction. As such, Ruth?s suicide physically substantiated her experiential reality to others, an escape from an unbearable existence predominated by pain. In the process, pain and hopelessness, otherwise inherently unknowable, were made ?real? or visible to others. In addition, Scarry (1985) states that, for those in severe pain, ?the claims of the body utterly nullify the claims of the world? (p. 33). The marginalization of the social voice within the experience of severe pain mirrors the relatively absent social voice found within Final Exit: The practicalities of self-deliverance and assisted suicide for the dying 147 (Humphry, 1991), Ruth?s reference material, found after death in video form. Within the experience of severe pain, Ruth was particularly vulnerable to the individualistic rationalism implicit within such discourses. However, in the process of Ruth?s suicide, the social world was not entirely absent. While Ruth?s decision ultimately privileged the claims of a body in pain, Ruth appeared to carry a consciousness of those held dear throughout the preparation and act of her suicide. Ruth?s last phone call to loved ones, her suicide note, and her final instructions all spoke of a careful attendance and concern for the needs of others. In addition, Ruth appeared to bring forward the presence of Elizabeth as she committed suicide given the presence of scattered travel brochures that were thick with interpersonal meaning. Ruth?s gesture, at the time of such hopelessness and apparent despair, spoke comfort into the life of Elizabeth. A Portrait of Ruth: Through the Lens of Medical Practitioners The following impressions of Ruth were based on interviews with two medical professionals, Dr. Lawson, a general practitioner, and Dr. Bridges, a podiatrist that occurred approximately three years after her death. Dr. Lawson had been Ruth?s attending physician for over 22 years, starting in 1980 through to the time of her death, in January 2003. Dr. Bridges had been Ruth?s podiatrist for six years, having first provided podiatric care to Ruth as a locum physician in 1994. In reference to Ruth?s prior medical history, Dr. Lawson reported that Ruth received hand surgery, specifically for joint fusion, in 1973 and 1974. Pharmaceutical treatment prior to 1980 was reportedly restricted to Aspirin. Dr. Bridges was unaware of Ruth?s prior medical history other than Ruth?s regular use of Aspirin. 148 Dr. Lawson noted that there was ?nothing unusual? in Ruth?s childhood or familial background (i.e., accidents, traumas, or parental medical and mental health histories). Dr. Bridges reported no knowledge of Ruth?s family or personal history nor was he aware of Ruth?s marital status or if she had children. Both physicians reported no knowledge of any surviving siblings. According to Dr. Lawson, Ruth spoke of a cousin, who lived locally, as well as a few friends in her neighbourhood. In this regard, Dr. Lawson thought that Ruth was a single woman who was ?very much a loner.? In Dr. Lawson?s opinion, Ruth spent much of her time reading and travelling until her health deteriorated. However, Dr. Bridges thought that music and friends brought meaning to Ruth?s life. During appointments, Ruth spoke to Dr. Bridges about her frequent trips, such as San Francisco and Seattle opera tours, and also asked him questions about his life. Dr. Lawson described Ruth as very open and friendly within their professional relationship. Likewise, Ruth was noted to have an excellent relationship with Dr. Lawson?s office support staff. Dr. Bridges described Ruth as engaging, well-liked, and even ?adored? by both himself and his medical assistant. During scheduled appointments, Dr. Bridges also described Ruth as frequently jovial in manner. With apparent amusement, Dr. Bridges described Ruth joking as she posed for pictures of her hand and foot deformities, taken to justify a disability claim with Revenue Canada. Dr. Bridges described Ruth as a ?very hap
UBC Theses and Dissertations
Illuminating discourse through lived experience with rheumatoid arthritis Friesen, Heather 2009
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