There is a potential danger there”: Talk about death and dying in genetic counselling consultations for Sudden Arrhythmic Death Syndrome

Abstract

In healthcare settings, discourse and conversation analytic studies consistently show that talk related to death and dying is treated with ‘interactional caution’ by both physicians and patients (e.g. Lutfey and Maynard 1998; Rodriguez et al. 2007). In their systematic review, Parry, Land and Seymour (2014) found recurrent themes of indirectness, allusive language, distancing techniques, shifting to the positive and nonverbal behaviours interpreted as conveying sensitivity to the seriousness of the situation. In this paper we extend existing research to the context of genetic counselling consultations for Sudden Arrhythmic Death Syndromes (SADS) in Hong Kong. SADS is an umbrella term for conditions that lead to sudden unexpected death without an observable cardiac structural defect in childhood and adulthood (Vavolizza et al, 2015). Although potentially fatal, SADS is treatable, with genetic diagnosis contributing to 80% success rate of detection (Wilde and Bezzina, 2005). Drawing on a corpus of 40+ consultations with clients and family members diagnosed with or at risk of SADS and employing theme-oriented discourse analysis (Roberts and Sarangi, 2005), we explore how genetic professionals broach the topic death and dying in these consultations. Consistent with previous research, talk about death and dying is indirect and mitigated through the use of generalization strategies, hypothetical scenarios and allusive language. This talk is initiated by genetic professionals and may occur at the stages of disclosure of genetic test results, family history-taking, or explanation-giving about the condition. While sensitive in nature, it serves important functions of facilitating clients’ decision-making regarding further (cascade) testing of other family members and ensuring clients’ adherence to recommended preventative measures. As such, talk about death and dying contributes to ensuring clients’ and family members’ well-being in the future.