Physicians and nurses are not always comfortable discussing Sudden Unexpected Death in Epilepsy (SUDEP) with their patients. In fact, many patients report that a physician has never addressed the issue of SUDEP with them.
Despite acknowledging the importance of discussing SUDEP, physicians and nurses do not always initiate this conversation and there are no guidelines to encourage it.
In order to better understand when and why healthcare providers have such discussions, we conducted focus groups with US-based epileptologists, neurologists and advanced practice nurses who specialize in epilepsy. This included a total of 43 healthcare providers: 19 epileptologists, 16 neurologists and eight advanced practice nurses. Their responses to questions pertaining to reasons for and against discussing SUDEP, and how they do it, were audio-recorded. Data was analyzed using standard qualitative analysis methodology.
Five key themes FOR the discussion of SUDEP were identified: Practical Accountability, Moral Accountability, Proactivity, Reactivity and Patient Advocacy.
Sometimes it is a sense of Practical Accountability that leads healthcare providers to discuss SUDEP with patients and their families, to ensure informed decision-making. A sense of moral obligation was reported by all the healthcare providers, who shared information when they believed that it was too important to withhold (Moral Accountability).
All three groups discussed SUDEP when triggered by a patient's enquiry or behaviour likely to increase the risk of SUDEP (Reactivity). They also initiated discussion about SUDEP to balance potentially inaccurate information received from other sources (Proactivity). For advanced practice nurses only, the need and right to know of patients and their families was reason to raise the issue of SUDEP(Patient Advocacy).
Three main themes emerged as reasons FOR NOT discussing SUDEP: Not at First, Moral Accountability and Out of Options.
The first theme refers to the need for the healthcare provider and the patient to establish a rapport before discussing SUDEP (Not at First). The second refers to withholding SUDEP information from patients in the belief that SUDEP is poorly understood and difficult to prevent (Moral Accountability). Both of the physician groups chose not to discuss SUDEP when all treatment options had failed, rather than raise anxiety in a situation with no solution for prevention (Out of Options).
All focus groups agreed that ways to discuss SUDEP include using unscripted discussions, together with written and prepared materials. Healthcare providers suggested that while procedures for discussing SUDEP should be somewhat standardized, they should also be tailored to accommodate the specific needs of individual patients.
We recommend that practitioners should actively involve patients in their decision-making processes, including what to discuss with them, to help them to make informed decisions.
The results of the project were published in Epilepsy & Behavior:
Miller, W.R., Young, N., Friedman, D., Buelow, J., Devinsky, O. (2014) Discussing sudden unexpected death in epilepsy (SUDEP) with patients: Practices of health-care providers. Epilepsy & Behavior, 32: 38-41.