Epilepsy & Behavior 41 (2014) 78
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Letter to the Editor SUDEP — Patients' ‘right to know’ or ‘right not to know’
To the Editor Sudden unexpected death in epilepsy is defined as ‘sudden unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomical cause for death’ [1]. The National Institute for Healthcare and Clinical Excellence in the UK has issued guidelines stating that all individuals with epilepsy should be given information about sudden unexpected death in epilepsy (SUDEP). In a survey of current practice amongst UK neurologists, 5% were said to discuss SUDEP with all their patients, 26% with the majority, 61% with few, and 7.5% with none of their patients. The two commonest reasons identified for SUDEP to be discussed were following questioning by the patient and the neurologist counseling patients who were considered to have multiple risk factors for SUDEP [2]. As a consultant pediatric neurologist working in a tertiary care center, my current practice is to discuss SUDEP with patients and relatives routinely in a timely fashion. Should we change our practice, and if so, why? The options include giving information on SUDEP to all patients with epilepsy, giving no information on SUDEP to patients and relatives unless prompted to do so, and providing information to patients with epilepsy who have risk factors for SUDEP. No identified form of intervention will alter the propensity of SUDEP, and knowledge of its existence may seriously deteriorate quality of life in the form of anxiety [3]. There have been no studies conducted that assess the impact of discussing SUDEP with patients and their carers. On the other hand, we as physicians have a duty to warn patients of material risk however small this may be. Many of the bereaved relatives would have preferred that the risks associated with epilepsy had been acknowledged and regretted that they and their deceased relative had not had the opportunity of making informed decision regarding lifestyle and treatment [4]. Importantly, Langan et al. identified (in their 154 patient case–control study based in the UK) that protective factors included the presence of supervision at night and the use of special precautions such as listening devices [5]. Thus, one could argue that education is pivotal in allowing carers to take necessary precautions. The third option of giving information regarding SUDEP to patients with epilepsy who have one or more additional risk factors seems reasonable, but there is conflicting evidence for many of the risk factors, and thus, an agreed system needs to be developed as to which risk factors merit discussion. A case–control study found seizure frequency to be the factor most strongly associated with an increased risk [6]. In one study, a higher incidence of SUDEP was reported in localization-
http://dx.doi.org/10.1016/j.yebeh.2014.09.042 1525-5050/© 2014 Elsevier Inc. All rights reserved.
related symptomatic epilepsy [7]. On the other hand, another case– control study found an increased risk of SUDEP amongst patients with idiopathic generalized epilepsy compared with those with localizationrelated symptomatic epilepsy [6]. Male gender and polypharmacy had traditionally been associated with an increased risk of SUDEP, but the study by Langan et al. did not concur with this. However, they did demonstrate the use of multiple AEDs for seizure control to be a significant risk factor for SUDEP [8]. It may be that advice about SUDEP could be targeted at patients having these and some other suggested risk factors. Which of these three options are in the best interest of the patient? To answer this question, we should ascertain ‘what the best interest of the patient’ is. Here lies the dilemma. Until we have strong and robust evidence to justify any of the three options, each case should be managed on an individual basis, and a common sense approach should be adopted. References [1] Nashef L. Sudden unexplained death in epilepsy: terminology and definitions. Epilepsia 2007;38(11):S6–8. [2] Morton B, Richardson A, Duncan S. Sudden unexplained death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry 2006;77:199–202. [3] Ramachandrannair R, Jack SM, Meaney BF, Ronen GM. SUDEP: what do parents want to know? Epilepsy Behav 2013;29(3):560–4. [4] Nashef L, Garner S, Sander JWAS, Fish DR, Shorvon SD. Circumstances of death in sudden death in epilepsy: interviews of bereaved relatives. J Neurol Neurosurg Psychiatry 1998;64:349–52. [5] Langan Y, Nashef L, Sander JW. Case–control study of SUDEP. Neurology 2005;64(7): 1131–3. [6] Nilsson L, Farahmand BY, Persson P, Thiblin I, Tomson T. Risk factors for death in epilepsy: a case control study. Lancet 1999:888–93. [7] Annegers JF, Hauser WA, Shirts SB. Heart disease mortality and morbidity in patients with epilepsy. Epilepsia 1984;25:699–704. [8] Beran RG, Weber S, Sungaran R, Venn N, Hung A. Review of the legal obligations of the doctor to discuss sudden unexplained death in epilepsy (SUDEP) — a cohort controlled comparative cross-matched study in an outpatient epilepsy clinic. Seizure 2004;13(4):523–8.
Arif Khan Aravindhan Baheerathan⁎ Nahin Hussain Department of Paediatric Neurology, Leicester Royal Infirmary, Infirmary Square, LE15WW Leicester, UK ⁎Corresponding author. Tel.: +44 7944199545. E-mail address: [email protected] (A. Baheerathan). 14 September 2014 Available online xxxx
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Letter to the Editor SUDEP — Patients' ‘right to know’ or ‘right not to know’
To the Editor Sudden unexpected death in epilepsy is defined as ‘sudden unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomical cause for death’ [1]. The National Institute for Healthcare and Clinical Excellence in the UK has issued guidelines stating that all individuals with epilepsy should be given information about sudden unexpected death in epilepsy (SUDEP). In a survey of current practice amongst UK neurologists, 5% were said to discuss SUDEP with all their patients, 26% with the majority, 61% with few, and 7.5% with none of their patients. The two commonest reasons identified for SUDEP to be discussed were following questioning by the patient and the neurologist counseling patients who were considered to have multiple risk factors for SUDEP [2]. As a consultant pediatric neurologist working in a tertiary care center, my current practice is to discuss SUDEP with patients and relatives routinely in a timely fashion. Should we change our practice, and if so, why? The options include giving information on SUDEP to all patients with epilepsy, giving no information on SUDEP to patients and relatives unless prompted to do so, and providing information to patients with epilepsy who have risk factors for SUDEP. No identified form of intervention will alter the propensity of SUDEP, and knowledge of its existence may seriously deteriorate quality of life in the form of anxiety [3]. There have been no studies conducted that assess the impact of discussing SUDEP with patients and their carers. On the other hand, we as physicians have a duty to warn patients of material risk however small this may be. Many of the bereaved relatives would have preferred that the risks associated with epilepsy had been acknowledged and regretted that they and their deceased relative had not had the opportunity of making informed decision regarding lifestyle and treatment [4]. Importantly, Langan et al. identified (in their 154 patient case–control study based in the UK) that protective factors included the presence of supervision at night and the use of special precautions such as listening devices [5]. Thus, one could argue that education is pivotal in allowing carers to take necessary precautions. The third option of giving information regarding SUDEP to patients with epilepsy who have one or more additional risk factors seems reasonable, but there is conflicting evidence for many of the risk factors, and thus, an agreed system needs to be developed as to which risk factors merit discussion. A case–control study found seizure frequency to be the factor most strongly associated with an increased risk [6]. In one study, a higher incidence of SUDEP was reported in localization-
http://dx.doi.org/10.1016/j.yebeh.2014.09.042 1525-5050/© 2014 Elsevier Inc. All rights reserved.
related symptomatic epilepsy [7]. On the other hand, another case– control study found an increased risk of SUDEP amongst patients with idiopathic generalized epilepsy compared with those with localizationrelated symptomatic epilepsy [6]. Male gender and polypharmacy had traditionally been associated with an increased risk of SUDEP, but the study by Langan et al. did not concur with this. However, they did demonstrate the use of multiple AEDs for seizure control to be a significant risk factor for SUDEP [8]. It may be that advice about SUDEP could be targeted at patients having these and some other suggested risk factors. Which of these three options are in the best interest of the patient? To answer this question, we should ascertain ‘what the best interest of the patient’ is. Here lies the dilemma. Until we have strong and robust evidence to justify any of the three options, each case should be managed on an individual basis, and a common sense approach should be adopted. References [1] Nashef L. Sudden unexplained death in epilepsy: terminology and definitions. Epilepsia 2007;38(11):S6–8. [2] Morton B, Richardson A, Duncan S. Sudden unexplained death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry 2006;77:199–202. [3] Ramachandrannair R, Jack SM, Meaney BF, Ronen GM. SUDEP: what do parents want to know? Epilepsy Behav 2013;29(3):560–4. [4] Nashef L, Garner S, Sander JWAS, Fish DR, Shorvon SD. Circumstances of death in sudden death in epilepsy: interviews of bereaved relatives. J Neurol Neurosurg Psychiatry 1998;64:349–52. [5] Langan Y, Nashef L, Sander JW. Case–control study of SUDEP. Neurology 2005;64(7): 1131–3. [6] Nilsson L, Farahmand BY, Persson P, Thiblin I, Tomson T. Risk factors for death in epilepsy: a case control study. Lancet 1999:888–93. [7] Annegers JF, Hauser WA, Shirts SB. Heart disease mortality and morbidity in patients with epilepsy. Epilepsia 1984;25:699–704. [8] Beran RG, Weber S, Sungaran R, Venn N, Hung A. Review of the legal obligations of the doctor to discuss sudden unexplained death in epilepsy (SUDEP) — a cohort controlled comparative cross-matched study in an outpatient epilepsy clinic. Seizure 2004;13(4):523–8.
Arif Khan Aravindhan Baheerathan⁎ Nahin Hussain Department of Paediatric Neurology, Leicester Royal Infirmary, Infirmary Square, LE15WW Leicester, UK ⁎Corresponding author. Tel.: +44 7944199545. E-mail address: [email protected] (A. Baheerathan). 14 September 2014 Available online xxxx
