Hope in Cancer Research Decision-Making

A review of Hope as a Discursive Practice in Cancer Research Decision-Making, by Kathleen Shannon Dorcy.

Kathleen Shannon Dorcy’s dissertation explores the role that hope plays in discussions about choices to participate in research. In focusing on hope as a discursive practice, the thesis offers a counter-position to the medical construction of hope as thing, further noting that an “unexamined, taken-for-granted practice of hope may exert undue influence on the decision-making/informed consent for cancer research participation” (p. iii).  The primary theoretical orientation is social constructionist, and the writings of theorist Pierre Bourdieu were used to examine the relevant historical discourses of hope, within three sources: academic literature; select articles from the journal Advances in Nursing Science; and, in transcripts of interviews with patients, family care-givers, and physician researchers (with particular attention paid to the use of metaphor). Shannon Dorcy particularly focuses on how hope and consent to participation in medical trials intersect, arguing that “the process of informed consent requires more than simply imparting dispassionate, adequate information” and that “we need to seriously evaluate how hope is firmly entrenched in the rhetoric and assumptions of the consent process” (p. 113).

In the Introductory chapter, the thesis begins with the quoted words “This is my only hope,” noting first that, for patients with cancer, and particularly those for whom conventional medical treatment has been unsuccessful, a clinical trial may “offer the opportunity for hope.” Second, that clinical trial investigators may invoke hope in the belief that their trials may have benefit for the patients; but that researchers have a vested interest in their research programs. While researchers are careful not to promise “cure,” Shannon Dorcy notes that patients’ (not unnatural) desire for cure may function as a coercive motivator for consent to participation in clinical trials, thus locating both hope and the thesis as possessed of bioethical significance. This chapter concludes with a clear articulation of the aims of the thesis (pp. 4-5): to explore the historical discourse of hope; to examine the practice of hope during decision-making regarding participation in research, as revealed in discussions with patients, family members and researchers; and to describe the “cultural, religious, political and traditional words that frame hope and assumptions held” by cancer researchers in discussing research participation.

Chapter 2 provides a succinct summary of the extent of the problem: research tells us that cancer is a significant cause of mortality in the United States (and other developed nations), and hope is a key component in cancer patients’ lives, with psychological, spiritual, and interpersonal import. Shannon Dorcy provides a brief historical review of hope, drawing attention to a “dualistic nature of hope” (pp. 11-12) with hope and hopelessness inherently intertwined, and covering the works of Karen Herth and Aaron T. Beck, and Charles (Rick) Snyder. She then notes the regulatory environment covering consent for research participation, particularly in the United States, setting the stage for an examination of hope in this context. All parties in this situation (researchers, patients, and their loved ones) hope that the researched treatment will have benefits for the patient, though their motives differ. Shannon Dorcy notes that “the very language used to facilitate informed consent” features words that “may lead patients to perceive research as an outcome” (with the hoped for outcome), when the function of research is to establish safety/efficacy, with “uncertain outcomes” (p. 13). She provides a brief summary description of classification of Clinical Trials – Phases 1-4, observing that recent regulatory changes have given greater number of patients access to earlier phases of drug trials, based on the premise that, in the absence of other options “subjects [sic] are generally willing to accept greater risks…” (NCI 2008, FDA 2008). After noting the ethical significance of the role of nurses in assisting patients in their decision-making for research participation, Shannon Dorcy concludes this chapter with a declamation of the need to examine “when and how hope is included as an influence or an element of coercion in the informed consent process,” examining the “specific linguistic, social, and historical contexts” (p. 16).

Chapter 3 outlines the theoretical and methodological framework that informed the study, respectively, constructionism, and discourse analysis, applying concepts as developed or used by Pierre Bourdieu. Shannon Dorcy provides brief but salient descriptions of habitus, language as ontology, agency, and genealogy (this latter with appropriate reference to Michel Foucault), always noting how these concepts shape and inform her examination of hope in this context. She then outlines her research design and method, naming her study as an “exploratory discursive analysis of existing transcribed interviews” (p. 27). She thus performed a secondary analysis on 109 interviews with patients, family members, and researchers, using HyperResearch(R) software for coding. A demographic breakdown revealed that her sample were primarily “white, upper-middle-class, Protestant Americans” (p. 27), and she appropriately notes the limitations contingent on the sample and the secondary analysis. She defines and justifies the use of content and critical discourse analysis, drawing on Norman Fairclough’s description of intertexuality to focus on the value assumptions embedded in shared meanings of hope. She observes later that hope was not the primary focus in the original study, which aimed to identify “what influenced patients” and family members’ decisions to participate in early-phase clinical trials, augmented by physicians’ perspectives on this (p. 31), she observes that hope emerged enough to warrant the present study. After noting appropriate measures taken to ensure ethical and methodological soundness, she provides a summary section for this material, further declaring her own position of inquiry, that is, as with “twenty-five year experience with oncology clinical research and cancer patients” (pp. 26-27). Finally, she details an overview of each part of the study: first, a philosophical inquiry (informed by the concept of intertextuality) into “how hope has been primarily objectified and reified in health care literature,” specifically in 3 articles from Advances in Nursing Science published between 1999-2000 (p. 36); second, a discursive analysis of the aforementioned 109 interviews, augmented by a consideration of rhetoric, with focus on logos (logic of argument), pathos (emotions of the audience), and ethos (trustworthiness or credibility of the researcher) (p. 37); and third, a review of the metaphors in the interview data set. The Chapter concludes with three tables describing the characteristics of the samples and interviews, and the philosophical framework.

Chapter 4 reproduces the text of a published article, alliteratively entitled “Hegemony, Hermeneutics, and the Heuristic of Hope,” based on the findings of Study 1 (Advances in Nursing Science 33, 2010, pp. 78-80). As stated in the abstract for this work, Shannon Dorcy identified assumptions and articulated rhetorical strategies used by authors of three articles reporting on hope research, as they legitimated “their presentations and their interpretations of the concept of hope” (p. 78). She defines the key concepts named in the title, and provides a summary table (pp. 46-47) of the targeted articles (including research purpose, sample, theoretical framework, study design and procedures, results, and conclusions). This is followed by a genealogy of hope, considering hope as presented through discourse, interpersonal interaction, and measurement. In an interesting and insightful analysis of this source material, Shannon Dorcy further compares and contrasts assumptions, techniques of legitimation, cultural location, and analyses the shared reference base for all. Her discussion draws out the role of hope as articulated in these three studies, noting a hegemony of hope, primarily as a thing that can be transferred.

In Chapter 5, Shannon Dorcy builds on other research indicating that hope “is a powerful multidimensional social practice,” noting that patients’ choices to opt for cancer research (indeed, any cancer treatment) may be no choice, but contingent on a “hope imperative”. She links this with Barbara Ehrenreich’s critique of positivity, further noting that though hope has been extensively defined and explored in healthcare, there is the need for ethical examination of how hope works in the context of choices about treatment and research.

At this point, Shannon Dorcy notes the relationship between a discursive examination of hope (citing Jaklin Eliott and Ian Olver’s research in how hope operates in language) and a habitus of hope. In so doing, she draws on the philosophical writings of Pierre Bourdieu, considering both the “language” and the “socially acquired, embodied systems of dispositions or predispositions that individuals share” (p. 62) with regard to hope in this context. In this data-driven chapter, she specifically examines how patients, carers, doctors and researchers “co-create” hope, to particular effect during the decision-making process. She analyses existing data (a secondary analysis) in the form of interviews with 25 patients who had consented to participate in a Phase II hematopoietic cell transplant (p. 65), and a further 20 family caregivers, as well as new data comprising interviews with physicians involved in patients’ consent to participate in said research. Shannon Dorcy observed that the process of consent emerged as a “rhetorical event that socially and dynamically aligns speakers and hearers in a process of persuasion” (p. 65). In a scholarly piece of analysis supported by direct quotations from her participants, she identified how appeals to logos (reasoning), ethos (reputation), and pathos (emotion) were selectively invoked to justify choices made, or recommended throughout the speech of those involved in the consent-to-research process. In her discussion, she highlights the significance of these rhetorical strategies in the wider social processes contributing to the research engine, noting that “science and cancer care are explicitly linked to articulations of hope” (p. 73), and concluding that researchers and practitioners should be aware of the coercive power of their own “habitus of hope” whilst they aim to support patient and family decision-making.

The final research chapter again works with this set of data, employing thematic analysis to identify and analyze metaphors, as Shannon Dorcy observes that these provide insight into how patients, families, and physicians conceptualize and understand the complex process of decision-making. She notes that research confirms that patients and families often perceive early-phase clinical trials as offering therapeutic benefit” (p. 83) – or, as offering hope – and this perception informs their decisions to participate in said trials. Based on this, Shannon Dorcy argues the need to better understand the metaphors of hope, and particularly any variation in how these are employed by different parties – as these may reveal unconscious and inescapable meanings (p. 84) that affect process and outcomes in decision-making. Her analysis combines a qualitative analysis of said metaphors, with a subsequent quantitative analysis, comparing the rates and associations of metaphor categories across her participant groups. Five dominant metaphors were identified, with textual examples provided. In order of frequency, they were: 1) Journey, typically starting at the point of cancer diagnosis and with the intended destination of a hoped-for cure. 2) Hands, often positive perceptions of control and trust held by physician/researchers, sometimes in partnership with patients and families. Shannon Dorcy notes that this metaphor “offered a humanizing of the research process,” (p. 90) countering the medicalized language associated with early phase research – providing further insight into the interpersonal negotiation of consent. 3) Faith, included reference to God, science, and the reputation of the cancer referral center, which Shannon Dorcy noted signified “participants’ trust in or reliance on someone beyond themselves” (p. 93). 4) Time, which was “both a comfort and a threat” (p. 95) as patients and families expressed their desire for more time, and acknowledged the uncertainty of what lay ahead. 5) War, which Shannon Dorcy notes is a dominant metaphor in discourse on cancer (referencing Susan Sontag), but yet did not appear to “add to the understanding of decision-making” in this context. In her discussion on these findings, Shannon Dorcy cautions that the use of metaphor may potentially produce miscommunication as they inherently contain assumptions that may not be shared, and thus may mislead. Establishing the ethical significance of this research, she asks “could the use of metaphors actually structure the decision-making so as to relegate participation in clinical research to merely taking the ‘next step’ in a long ‘journey’?” (p. 98); further concluding that researchers and practitioners reflectively and reflexively consider the language used during the consent process, and allow appropriate time to help patients and families clarify their expectations from participation.

In her concluding chapter, Shannon Dorcy recapitulates the themes of her research: that hope is both a commodity, and a discursive practice or “scripted performance” that can be a coercive force compelling cancer patients to participation in clinical trials; that patients, family caregivers, and researchers (involved in) in clinical trials are all (differently) invested in hope; and that the habitus of hope, primarily realized in a hope-imperative, sees research as imbued with a hope for cure, with decisions made to participate typically preceding any formal consent process. She goes on to recommend that healthcare educational curricula include space for reflective consideration of practitioners’ own understandings of hope, and the role that it plays in decision-making (p. 111). Further, that the power inherent in hope discourse requires that researchers (and clinicians involved in the research endeavor) are mindful of inadvertent coercive recruitment strategies, in part influenced by their own stake in hope. Almost parenthetically, Shannon Dorcy observes that the consent process must construct the patient as agentic, with patients consenting to (not being consented into) research, further arguing for greater evaluation of how hope is entrenched in the “rhetoric and assumptions of the consent process” (p. 113). This she sees as a societal, not simply judicial responsibility. Finally, she recommends further examination of how consent is done, noting that the introduction of palliative care into the consent process and research would provide opportunities to shift the focus from hope for cure, onto quality of life and amelioration of suffering – implicitly arguing for the significance of such aims.

Kathleen Shannon Dorcy’s dissertation adds to the emerging research examining hope in action, unpacking and deconstructing how hope operates. Her specific focus on hope as part of the consent process for participation in early phase clinical trials for cancer treatment offers a compelling and accessible insight into hope, consent, and research, but it is her critical examination of the nexus of all three that will inform and challenge her audience.

Jaklin A. Eliott
Counselling and Psychotherapy Graduate Program
University of Adelaide
Jaklin.eliott@adelaide.edu.au

Primary Sources

Interview data with patients, caregivers, and physicians involved in consent process for participation in early phase clinical trials for allogeneic hematopoietic cell transplant at a the Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance.
Journal of Nursing Science

Dissertation Information

The University of Utah, 2011. 122 pp. Primary Advisor: Kristin Gates Cloyes.

 

Image: Photograph by Kathleen Shannon Dorcy.

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