Session 5: Hope Expressed Clinically

Session 5: Hope Expressed Clinically
Chair: Nicole Ridgeway

Hoping is Better than Hope: A Discursive Analysis of Dying Cancer Patients’ Speech
Jaklin Eliott
Royal Adelaide Hospital Cancer Research Centre, Royal Adelaide Hospital, Adelaide, Australia

This report is based upon data gained in the second of a series of studies using interview data and discourse-analytic techniques to examine patients’ speech on end-of-life decision-making. In our earlier study, some patients spontaneously spoke of hope, representing it as an important, but variable construct. In this study we examine the discursive properties of hope as it emerged unprompted during semi-structured interviews with 28 patients in the final phase of terminal cancer.
Hope (or some derivative thereof) featured within 25 interviews, used by 26 persons (including the interviewer) a total of 80 times, with use of verb outweighing the noun (50:30). Confirming previous research, in this context, hope-as-a-noun invariably referenced the medical domain—either referring to an objective verifiable probability of successful medical intervention to avert death (typically taking the negative form ‘there is no hope’); or, to the subjective, vulnerable, and valuable possession of the patient needed in the fight against their disease. This hope positioned the patient as relatively powerless and subject to external forces and was most commonly associated with absolute solutions, with life-and-death consequences for the patient. Hope-as-a-verb operated to emphasise the patient’s active engagement in life, and to denote what was good and positive for them, both now and in the future. Rather than being focussed exclusively upon patients’ medical circumstances, hope-as-a-verb referenced other domains, including the social and the personal. It was used to assign responsibility to others, to indicate and establish solidarity or agreement between the speaker and others, and thereby functioned to establish interpersonal ties between individuals. Thus, through hoping, patients established connection with others and with the future. In the context of interactions between patients and clinical staff, we conclude that the use of hope-as-a-verb may have benefit, enabling the patient—even when dying—to focus on the positive.

In the mid 1990s, scientists found that mutations in the BRCA1 and BRCA2 genes increased carriers’ risk to develop breast or ovarian cancer to a level of 50-80% for the former and 25-40% for the latter. These figures are of particular significance in Israel, owing to the distinctive distribution of mutations among Jewish women: First, whereas in general, BRCA1 and BRCA1 can be mutated in hundreds of ways, in the Jewish population, three specific mutations comprise the great majority of deleterious mutations; i.e., if none of these three mutations is found, then it is highly unlikely that a different mutation will be identified. Second, mutation prevalence is substantially higher than in non-Jewish populations, reaching some 2.5% of Jewish women of Ashkenazi (European) descent. Consequently, 12% – 25% of Jewish Ashkenazi breast cancer patients in Israel are carriers of one of these mutations, as well as about 40% of Ashkenazi women diagnosed with ovarian cancer.
Testing for mutations is available and straightforward (by means of blood test.) For Jewish women it is also inexpensive, owing to the small number of mutations that need to be searched. In Israel , testing is state funded for cancer patients, as well as for their relatives. Women who are found to be carriers are offered various risk reducing measures, primarily intensive surveillance, but also experimental chemoprevention and prophylactic surgery (i.e., removal of the ovaries and/or breasts.)
My paper would reflect on the issue of hope through exploring personal accounts of women with family history of cancer and women who had been diagnosed with BRCA mutations. Looking at the diverse responses and risk management strategies that these women have chose to undertake, which span from avoidance to varying levels of surveillance and on to prophylactic surgery, I will suggest different perceptions regarding the meaning of hope in situations of health risk and uncertainty. Additionally, I will try to tease out diverse approaches to coping as related to the varied perceptions. Assuming that testing for genetic predisposition for multifactorial, late onset diseases is likely to become increasingly common in the future, the meaning that women assign to hope, the ways they sustain it and incorporate the notion into their personal bio-narratives, may be found to be crucial at both the practical, as well as the epistemological level of one’s own existence.

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Fostering hope is an integral aspect of spiritual traditions. As a chaplain in a long-term psychiatric care facility, I work with patients who have severe and debilitating mental illnesses. Hence, one of my tasks is to foster hope. In this paper I draw upon the work of Donald Capps, particularly his book Agents of Hope: A Pastoral Psychology, to articulate a psychology of hope for the severely mentally ill. In addition, I offer insights for those of us who might venture to call ourselves normal. In his book Capps articulates that hope originates in life itself. He outlines three major threats to hope (despair, apathy, and shame) and three major allies (trust, patience, and modesty). Patients with severe mental illnesses suffer from all of these threats, and my role as a chaplain is to build greater connections with the allies. Yet I would also argue that they need a sense that their lives matter–they need significance. Insignificance is a major threat to hope at psychiatric facilities, where patients can feel ignored and unloved, and I suggest that it is a major threat to hope amongst those outside the mental hospital as well. The ally in this case is agency–psychiatric patients need to feel that they can take some control over the future direction of their lives. To gain agency is to foster hope and to combat insignificance. In the second portion of the paper, I explore how psychiatric patients might gain greater agency in their lives. One is through volunteer efforts or other work. A second, I suggest, is through spiritual counseling, study, and religious services. A third way to gain agency, I believe, is to posit a very different future for themselves, perhaps one outside the mental institution, and to make steps towards attaining it.

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