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SUDEP, the aftermath: supporting the bereaved
  1. Lina Nashef1,
  2. John Paul Leach2
  1. 1Department of Neurology, King’s College Hospital, London, UK
  2. 2School of Medicine, University of Glasgow, Glasgow, UK
  1. Correspondence to Dr Lina Nashef, Department of Neurology, King’s College Hospital, London SE5 9RS, UK; lina.nashef{at}nhs.net

Abstract

Sudden unexpected death in epilepsy is a recurring calamity, yet there is little evidence to guide standards of care for supporting the bereaved. Grief in bereavement includes loss, feelings of guilt, anger and blame. There is also the shock and trauma of the sudden event. How can this be alleviated? This paper focuses on guiding the physician to support the bereaved, while recognising the limited evidence and the varying circumstances that may not always facilitate this. We propose a pathway of care and mode of communication with the deceased’s family, with whom contact is currently limited. We suggest timely contact by telephone or in person, followed by ongoing support and referral to voluntary organisations and specialist services, as needed. Clarification and discussion may mitigate inappropriate feelings of guilt and blame, and may help the family with their sudden and unexpected loss.

  • sudep
  • bereavement
  • epilepsy
  • aftermath

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Footnotes

  • Contributors LN wrote the first draft and JPL edited the manuscript.

  • Competing interests None declared.

  • Provenance and peer review Commissioned; externally peer reviewed. This paper was reviewed by Torbjörn Tomson, Stockholm, Sweden.

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  • Editors’ commentary
    Phil E M Smith Geraint N Fuller