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Communication Challenges: A Spotlight on New-Onset Refractory Status Epilepticus
Teneille E Gofton1, Nora Wong2, Lawrence J Hirsch3
1Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
Mayo Clinic Proceedings
|April 3, 2019
Summary
New-onset refractory status epilepticus (NORSE) presents communication challenges due to its unpredictable nature. Proactive communication strategies involving families, hospitals, and institutions are crucial for effective care coordination.
Area of Science:
- Neurology
- Critical Care Medicine
- Healthcare Communication
Background:
- New-onset refractory status epilepticus (NORSE) is a rare, severe neurological emergency.
- It affects previously healthy individuals, often children and young adults, with unpredictable outcomes.
- Effective communication is vital but challenging due to unknown etiology and complex care needs.
Purpose of the Study:
- To address communication challenges in NORSE management.
- To propose proactive communication strategies at multiple levels of care.
- To improve information dissemination and care coordination for NORSE patients and families.
Main Methods:
- Analysis of communication barriers in NORSE.
- Development of a proactive communication framework.
- Recommendations for organizational change and enhanced information dissemination.
Main Results:
- Identified communication challenges related to unknown etiology, unpredictable course, and multidisciplinary involvement.
- Proposed three levels of proactive communication: family shared decision-making, intra-hospital, and inter-institutional.
- Highlighted key initiatives: designating a most responsible physician and early palliative care integration.
Conclusions:
- Effective communication is essential for managing NORSE.
- Proactive, multi-level communication strategies can mitigate challenges.
- Key roles of a most responsible physician and palliative care are vital for integrated care and support.
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