Alison Rotha Moore

Developing ethical strategies to assist oncologists in seeking informed consent to cancer clinical trials

Randomised clinical trials have come to be regarded as the gold standard in treatment evaluation. However, many doctors see the discussion of a clinical trial as an intrusion into the doctor-patient relationship and find these discussions difficult to initiate. Detailed informed consent is now a requirement of patient participation in trials; however, it is known that patients commonly fail to understand and recall the information conveyed. These difficulties for doctors and patients raise questions about the ethical integrity of the informed consent process. In this study, we have developed a set of communication strategies underpinned by ethical, linguistic and psychological theory, designed to assist doctors in this difficult task. Initially, audiotape transcripts of 26 consultations in which 10 medical oncologists invited patients to participate in clinical trials were analysed by expert ethicists, linguists, oncologists and psychologists, using rigorous qualitative methodology. A subset of seven of these was subjected to detailed linguistic analysis. A strategies document was developed to address themes which emerged from these analyses. This document was presented to relevant expert stakeholders. Their feedback was incorporated into the final document. Four themes emerged from the analysis; (a) shared decision-making, (b) the sequence of moves in the consultation, (c) the type and clarity of the information provided and (d) disclosure of controversial information and coercion. Detailed strategies were developed to assist doctors to communicate in these areas. We have developed a set of ethical strategies which may assist health professionals in this difficult area. A training package based on these strategies is currently being evaluated in a multi-centre randomised controlled trial.

Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: A pilot study.

The literature on risk perception in women from high-risk breast cancer families reveals persistent over-estimation of risk, even after counseling. In this study, a communication aid was designed to facilitate discussion of risk between clinical geneticists and genetic counselors and women from this high-risk population. Method: Stage 1. The aid was developed by an expert panel of clinical geneticists, genetic counselors, psychologists, an epidemiologist, an oncologist, linguists and a consumer. It was guided by the international literature on risk communication and a large multi-centre Australian study of risk communication. The 13 page full-color communication aid used varying formats of words, numbers, graphs and pie-charts to address (a) the woman’s subjective risk; (b) the population risk of breast cancer; c) the risk of inherited breast cancer; (d) the cumulative risk for women with BRCA1 and BRCA2 mutations; (e) family risk factors; (f) the woman’s suitability for genetic testing; (h) screening and management recommendations, and (i) a re-assessment of the woman’s subjective risk. Stage 2: A before–after pilot study of 38 women who were unaffected with breast cancer and were attending four Australian familial cancer clinics was undertaken. Baseline and follow-up questionnaires were completed by 27 women. Outcomes were compared to those observed in 107 similar women undergoing genetic counseling without the communication aid in 2001. Results: The risk communication aid appears to be beneficial; breast cancer genetics knowledge improved in some areas and importantly, risk perceptions improved in the cohort receiving the communication aid. Psychological measures showed no difference in anxiety or depression between the group receiving the communication aid and the comparison cohort. Women and clinicians were very positive about the usefulness of the communication aid as an adjunct to the genetic counseling consultation.

Linguistic analysis of verbal and non-verbal communication in the operating room

Surgery can be a triumph of co‐operation, the procedure evolving as a result of joint action between multiple participants. The communication that mediates the joint action of surgery is conveyed by verbal but particularly by non‐verbal signals. Competing priorities superimposed by surgical learning must also be negotiated within this context and this paper draws on techniques of systemic functional linguistics to observe and analyse the flow of information during such a phase of surgery.

Can Semantic Networks Capture Intra-and Inter-Registerial Variation? Palliative Care Discourse Interrogates Hasan’s Message Semantics

Perhaps the most important line of argument in Ruqaiya Hasan’s work is the idea that the semantic stratum of language can be modelled paradigmatically, through the tool which has been used to model other strata, namely, the system network (Hasan, 1996a, 2009b). As Hasan and Cloran put it (2009[1990], p. 95): Since the principle of paradigmatic organisation applies to all levels of language, it is reasonable to suppose that the facts at the semantic level can also be represented as systems of interlocking choices.