The view of the clinician and the scientist on the family experience of sudden epilepsy deaths

Thomas, R. S., Craig, D. P. and Leach, J. P. (2020) The view of the clinician and the scientist on the family experience of sudden epilepsy deaths. Epilepsy and Behavior, 103(Part B), 106679. (doi: 10.1016/j.yebeh.2019.106679) (PMID:31822397)

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Abstract

A sudden epilepsy-associated death is a tragedy for the bereaved, a failure for the clinician and a challenge for a research scientist. Sudden death in epilepsy cannot be truly anticipated or prepared for by the bereaved, or the clinical team. Communications and provision of pastoral care following sudden unexpected death in epilepsy (SUDEP) is an important part of an epilepsy service where interaction with the family and specialist services for the bereaved can be rewarding. Sudden death and SUDEP are valid targets for research attention, but families may be less aware of opportunities to assist in life science research or conversely feel coerced at a vulnerable time. We have a responsibility to ensure that the SUDEP risk is minimized and that we maximize the learning potential from each death. Out of such tragedies some good must come, but this will take combined efforts from doctors, families, and the voluntary sector acting in league with scientific and academic funders. In this review, we set out to consider the dual viewpoints of the clinician and the scientist and how they consider the family experience of sudden deaths to provide advice for all parties.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Leach, Dr John Paul
Authors: Thomas, R. S., Craig, D. P., and Leach, J. P.
College/School:College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
Journal Name:Epilepsy and Behavior
Publisher:Elsevier
ISSN:1525-5050
ISSN (Online):1525-5069
ISBN:15255069 15255050
Published Online:09 December 2019

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