How epilepsy risks might be introduced and discussed in clinical consultations

Adverse impacts of epilepsy (e.g., injury, depression, and Sudden Unexpected Death from Epilepsy (SUDEP) can be mitigated by factors that patients may control, such as medication adherence, improved sleep and diet, reduced alcohol and taking care around pregnancy. New guidelines state that risk should be discussed at the time of diagnosis but some clinicians express concern about not wanting to raise anxiety.

To explicate practices by which epilepsy expert clinicians broach discussions of risk in specialist epilepsy clinics.

24 recordings of initial telephone appointments at specialist clinics where epilepsy is diagnosed from two specialist outpatient epilepsy services in England were subjected to Conversation Analysis. Data in British English. A single case study, identified as largely typical of the data set but also highlighting points of interest, is included to illustrate the findings. We also present reflections from analysis of 12 extracts examined in joint-analysis sessions with clinicians, researchers and patients.

The analysis revealed that broaching risk was sensitive and challenging. Conversations involved confronting confusion about risk and negotiation between clinician and patient. Clinicians employ questions to establish the patient's knowledge. They were 'repair implicative' that is including lots of changes of sentence direction to achieve mutual understanding (intersubjectivity). Further, the Joint-Analysis highlighted the significance of epistemic matters - who knows what and how.

Clinicians invite patients to share what they know about risk as a springboard for discussing behaviour change, enabling them to avoid naming specific risks (such as death). However, this often led to interactional trouble, and patients expressed a preference for more direct conversations.

Clinicians can carefully calibrate risk information according to what the patient with epilepsy already knows, sensitively broaching risk of death. However, caution is needed to maximise patient engagement in risk management discussions.