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Supporting the bereaved
Responding to community need
Managing fear
Accessing information
Empowering the global information
Communicating risk
Telling young people?
Reflecting on my clinical experience
Educating health professionals
Living with risks
Considering medico-legal issues
Determining the right to know
Death can change everything priorities, perceptions, abilities, view of the world, view of ourselves, relationships and so on. Sudden death brings with it the added dimensions of being unexpected, untimely and sometimes traumatic. The shock of the death can also be exacerbated because the family had not been told of any risk or even told there was no risk! I think the ignorance of not ever thinking that it could result in death is the biggest shock Bereaved relative (Kennelly & Riesel 2002)
In addition, with sudden deaths the bereaved are thrust into an unfamiliar world of investigation into the death. This can have a considerable impact on the bereaved particularly when the body is taken away and they are unable to see and spend time with the deceased. At best unhelpful, this situation can also be detrimental.
So, it is not surprising that those who contact the support team of Epilepsy Bereaved feel their world has fallen apart and is, perhaps, frighteningly out of control. Everyones reaction is different, as is their way of grieving. However to begin with people generally want information and answers to their questions what is SUDEP? Why werent they told about SUDEP? How could this happen? Could they have saved their loved one? Why did resuscitation not work? They may also want information regarding the legal process, the post mortem, the coroner, the inquest, and their lawful rights. We can explain legal procedures and requirements since families can feel too daunted and upset to ask questions from the authorities.
Research commissioned by Epilepsy Bereaved from the College of Health with bereaved relatives (Kennelly & Riesel 2002) reveals the emotional impact on the family ranging from shock and devastation, to guilt, anger, difficulty accepting the death, and loneliness. Time and again, as the family support manager, I have been told how helpful it has been for people to discover they are not on their own. Others have died from epilepsy and so there are people out there who have also experienced the unthinkable. This helps to lessen their sense of isolation.
For some people it is very important to talk about what has happened and the effect on them. They want, and need, to express the strong emotions they are feeling particularly to someone who had not been personally involved in any way prior to the death.
Calls to our contact line or emails to the charity from bereaved relatives are managed by myself as family support manager. Family support volunteers are also involved in our work. These volunteers are at least two years beyond their own experience of bereavement and are trained in listening and befriending skills. For newly bereaved people talking to someone from the family support team regularly over a period of time helps them adjust to the huge changes in their lives. Knowing that the listener really does have an understanding of their experience can reassure them that they are grieving rather than disintegrating or becoming mad. It also indirectly gives hope that they, too, can have a future.
After receiving information some bereaved people want to grieve by doing rather than talking so we believe in developing the charitys work to mirror the needs of those in contact with us. The charity produces two magazines a year which include their writings, poems and other contributions. People can also be directed towards focused activity within the Education and Awareness section of Epilepsy Bereaved. They are offered a range of opportunities such as running an information table or joining our speakers team.
Each year we organise several support group meetings on Saturdays in different parts of the country. This gives our members a chance to meet with others from their area and beyond, who have had similar experiences. These occasions are structured to include plenty of informal time, around refreshments, when those attending can meet and chat with each other. It is not uncommon for people, especially first-timers, to arrive saying they need to leave early but then to stay the whole time. This shows the value they have found in meeting together. Some want to talk to many different people while others prefer to say very little. All approaches are respected, and we in the family support team do our best to enable everyone to benefit as much as possible. Interaction and contribution are also key features of the more structured part of the day, as is flexibility regarding the programme and its contents.
Every three years Epilepsy Bereaved holds an inclusive memorial service. This is another occasion for meeting together for remembrance of our loved ones, celebration of their lives and recognition of their deaths.
Within the family support team we are very well aware of our limited resources. But, rather than being daunted, we are eager to do what we can to help others bereaved by epilepsy.
Patricia JohnstonFamily Support Manager, Epilepsy Bereaved, UK
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The SUDEP phenomenon has been known to exist for many years, but only in the past two or three decades have neurologists in the United States acknowledged it as a common cause of death in association with epilepsy.
In the USA the educational effort about SUDEP for patients and families has been minimal. Reluctance to discuss the possibility of SUDEP when a seizure disorder is diagnosed seems to be based upon the presumption that such information would be too stressful or too difficult for the patient and family to handle. This attitude has been manifested both by medical professionals and lay organisations that support persons with epilepsy. The fear that such information may have a negative impact is not borne out by the responses of patients and families when presented with the facts.
Indeed, there seems to be some change in the wind regarding the desire to know more about SUDEP. Recently, because of requests for information from persons with epilepsy and their families, a first ever regional symposium about SUDEP was presented through the auspices of the Epilepsy Foundation of Southeastern Pennsylvania. Evaluations from the more than 100 attendees indicated that they were grateful to have been presented, for the first time, with in-depth information about SUDEP. It seemed that having this information was far more helpful than not knowing. Responses to this symposium indicate that patients and their families seem more comfortable discussing SUDEP than are the medical professionals.
The most frustrating aspect of SUDEP is our lack of knowledge about why it occurs and how it may be prevented. While there is data indicating that optimal seizure control lowers the probability of occurrence, it does not remove the chance entirely. The only intervention that is associated with an abolition of risk is that of complete cure of seizures consequent to temporal lobe surgery. The implication of this observation is that having any seizures, no matter how infrequent, is still associated with some risk of SUDEP.
The association of SUDEP with sleep has raised the question of whether monitoring of respiratory function during sleep allows for intervention by care-givers to prevent a fatal apnoea. Nonetheless, we still have a large group at risk of fatal cardiac arrhythmias for which we do not have any preventive measures.
Above and beyond the need for more scientific investigation into mechanism and prevention, we also need to determine the prevalence of SUDEP. A recent survey of medical examiners and coroners in the United States found a reluctance to use the diagnosis of SUDEP even when post mortem examination finds no other cause of death. Inappropriate diagnoses such as seizure related death, status epilepticus, or respiratory failure may be used instead. Consequently the accurate prevalence of this disorder is underestimated when compiling statistics about causes of death in epilepsy.
Many more investigators are involved in SUDEP related research than there were even a few years ago. We can be hopeful that some answers to the mystery of this disorder will be forthcoming.
I must say I am surprised at the extent of controversy regarding whether or not physicians should discuss SUDEP with patients and families. Fear of dying from seizures is nearly universal among patients and families. Most are reluctant to speak of it openly. Patients and families explain they dont ask their physicians because they are afraid their worst fears might be confirmed. These fears are substantial. In our original UCLA study (Mittan 1986), we found approximately two-thirds of patients were afraid they could die with their next seizure and nearly three-fourths were afraid seizures would cause further brain damage.
For 22 years I have presented the Seizures & Epilepsy Education (S.E.E.) program. This has given me the opportunity to speak with nearly 30,000 patients and families with epilepsy in Australia, Canada, New Zealand, and the U.S. I have found patients and families are almost universally afraid of death from seizures. It makes sense even non-convulsive seizures are frightening to people. So far when I have asked parents, all but one thought that their child was going to die when they first witnessed the childs seizures. The one exception was an epilepsy nurse specialist whose daughter started having absence seizures.
When these inevitable patient and family fears are not discussed, they are left unchecked. These fears can, and often do, run rampant to the serious ruin of quality of life. Fear is the force behind developmentally disabling overprotection and overcontrol of the person with epilepsy. Fear is the force leaving people afraid to be alone and afraid to go out by themselves because of seizures. Fear shrinks life to the house and social contact to the immediate family for far too many.
Rather than alarming families, discussing causes of death in epilepsy gives them a more realistic appreciation of the risk which is often much to their relief! The S.E.E. program has taught patients and families about SUDEP, status epilepticus, and fatal accidents in epilepsy, including relative risk and circumstances for each. A controlled outcome study (Helgeson et al. 1990) and a recent study by Shore et al. not yet published showed significantly reduced fear as a result and equally important, significantly improved compliance.
During every S.E.E. program I poll the audience to find out how many have discontinued their medications on their own and have gone into status epilepticus. Consistently 10-15% will raise their hands. They protest they were never warned of the danger. Nearly all were angry with their physician about it. In fact, they undoubtedly were warned with you should never stop taking your medications!
However, telling people what to do is rarely effective in changing behavior. It is essential to tell people why to do it. Every prescription patients receive is accompanied with some version of take this exactly as directed. Patients hear this so often it stops being meaningful. After all, how often have they failed to take all of their antibiotics or other medication and nothing bad happened? Why should it be any different with seizure medications? However, if the patient knew they risked status and possibly death by stopping their medication that would get their attention. But to do this, the physician has to talk about status, SUDEP, and their lethal potential.
The benefits of talking about SUDEP, status epilepticus, and other risks in epilepsy not only fulfills patients and families right to know, but can significantly contribute to reducing fear. It may save a life. Rather than threatening the emotional wellbeing of patients and families (who already live with fear of death), the discussion of SUDEP offers a therapeutic opportunity. It is a chance to significantly improve quality of life and reduce harm from seizures. The methods used in disclosing this information can strongly influence medical and psychosocial outcomes.
In 1996 a study of the information on epilepsy given to newly diagnosed patients (Preston 1997) discovered that rarely, if ever, was the risk of SUDEP mentioned.
In 2005, in the UK, all the major epilepsy charities are now prepared to talk about the topic; some have their own literature, others use information produced by Epilepsy Bereaved. The most commonly used leaflet is Epilepsy Be safe, reduce risks which is a leaflet written by all the epilepsy organisations in the UK and Ireland under the umbrella of the Joint Epilepsy Council. The idea that all the epilepsy charities in the UK would band together to produce literature on such a taboo topic would have been unimaginable in 1996.
The biggest change in the last ten years has been the growth of the internet. A SUDEP search produces 13700 mentions, more than 20 pages.
With a few clicks of the mouse one can browse through research papers from all over the world, reports from conferences, Epilepsy Bereaveds specialist SUDEP site, guidelines from the medical profession, chatrooms, and the broad spectrum of information presented by epilepsy charities, treatment centres and consumer pages such as the Crazy Meds Guide to SUDEP. It is important to remember that although web-based information is now relatively easy and cheap to access, it is not always correct.
A bookshop search uncovers very few publications about epilepsy. Those that are on sale have been slow to reflect the current SUDEP knowledge available and some still do not mention SUDEP at all. A list of recommended titles is included in Epilepsy Bereaveds booklet Epilepsy and the Young Adult. The first edition of this booklet published in 1996 was the only booklet written at that time which covered sudden death.
Most physicians, consultants, and specialist epilepsy nurses now agree that it is better to cover the slightly increased risk of a sudden death in epilepsy in the same way as they would with asthma or diabetes. Patients, or their carers, are entitled to know the facts about their condition so that they can make informed decisions. Epilepsy Bereaved in cooperation with the Royal College of Nursing has produced a facts sheet for doctors SUDEP Aware in Primary Care to help them do this. Literature is not always the most suitable way to cover the subject. Often a doctor or nurse, talking through the risks and putting them into perspective, is a more adaptable way of approaching a difficult topic with a new patient.
Since the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002) confirmed that there are about 1000 deaths a year in the UK as a result of epilepsy, of which about 500 will be classified as SUDEP, it is no longer possible for the epilepsy community to ignore the issue. New national guidelines on epilepsy in England and Wales 2004 now include SUDEP as essential information.
Much information about SUDEP is now readily available from the medical profession and voluntary bodies through books, leaflets and, most of all, the internet. Links to the literature discussed in this article are found at http://www.sudep.org/publications1a.asp
Epilepsy Bereaved, the leading charity formed in 1995 to support and inform families bereaved through epilepsy, now hears from families all over the world within weeks of a death. Many of us who have lost family members through SUDEP have achieved one of our main ambitions; to ensure that, when a death occurs to others, they have been forewarned, understand that it has happened before, and know where to turn for support and information.
Jennifer Preston Epilepsy Bereaved , UK
Epilepsy.com is an online resource provided by The Epilepsy Project. Our mission is to inform and empower two groups of patients and their families: those facing newly diagnosed epilepsy, and those struggling with epilepsy that has resisted treatment. Approximately 120,000 people visit epilepsy.com each month and read over 500,000 pages of information.
As editor-in-chief, I oversee all the content on epilepsy.com. Believing that knowledge is empowering, we strive to present information about all the medical and psychosocial aspects of epilepsy. No topic is off-limits, including SUDEP. 2,000 to 3,000 people read this page each month.
In addition to content on epilepsy.com, we have an active Community Forum, where over 4,000 members communicate with one another, ask questions and share personal insights about their experiences with epilepsy.
SUDEP is a common topic discussed on the Community Forum. Family members and friends express their fear that the person with epilepsy will die from a seizure, or have severe brain damage, and are particularly concerned when during a seizure their friend stops breathing and turns blue. While most participants know that death from seizures rarely occurs, and that when it does it generally is associated with severe and uncontrolled seizures, some people are clearly misinformed. One person said that a neurologist had assured him that no one has ever died from a seizure, but that continuous seizures could cause enough heart damage to cause a heart attack. Another said that most neurologists play down SUDEP. Yet another said The doctors and nurse educators do not talk about SUDEP. I mentioned it to the nurse after reading it online and she said it is very rare and not to worry. In all her 20 years of experience, she had only one patient die of SUDEP. She was interested to hear that it is being talked about on the web and that maybe they need to consider it as part of their patient education. One person said, One of my problems, I realise after researching epilepsy on epilepsy.com, is that my doctor did not do his job of educating me about my condition. He never explained how or why my medication would work and why I should take it regularly. If I had known how it worked, then I probably would have taken it more often. If he had educated me about SUDEP or had referred me to epilepsy groups, things may be different.
Several participants in the Community Forum have been touched personally by SUDEP. They search for answers and understanding. A wife lost her husband. I was never told of the risk that my husband might die from a seizure. He had instructed me NEVER to call 911 (he found it humiliating and unhelpful). Its not going to kill me, he said. My husband died of SUDEP at the age of 40. A mother lost her 18-year-old daughter:
SUDEP was something that I was totally unaware of. I called to wake her up one morning only to find her dead. She suffered from poorly controlled seizures and would have 2 to 9 a month. I know that losing a child is the most difficult event that one can experience. I have good days and bad ones. I am slowly healing from the shock of this. I think about her all the time. The autopsy showed that she did not aspirate nor suffocate. No abnormal findings whatsoever in her organs. I am getting better at wondering if there was something else that I could have done, or missed, to prevent this. I was never told that she was at high risk of sudden death. I found this out after she passed. The clinic that we went to had told me that it was actually better that she had seizures at night. I did ask the neurologist why he never informed me that she was at high risk of sudden death and he responded by asking me if I thought that this was something that they should be telling people. I do and I dont. I am thankful that I did not know. I would have sheltered her and would have been paranoid. But then on the other hand I believe that I should have known about the possibility. I just feel that there needs to be more research on this SUDEP and those who are at high risk should be told. Families should be informed about the possibilities.
I think that says it all. We will continue to add new information to epilepsy.com about SUDEP as it becomes available.
Steven C SchachterProfessor of Neurology,Harvard Medical School, Boston, Massachusetts, USA
Very often, how a message is given is more important than the content of the message itself. How many times have you been upset with someone, not for what they said, but how they said it? The same is true when talking about SUDEP. How it is discussed often has a greater impact on the result than hearing of SUDEP itself.
Lets say a man falls off a ferry into the ocean. His life is at risk. He knows it and the ferry captain knows it. If the ferry captain shouts to the man Swim or you might drown! the man is likely to become alarmed and thrash more violently out of fear he might die.
If instead the captain said, This happens sometimes. Im going to tell you what you can do to keep yourself afloat. You dont need to drown when you can do things to prevent it. First, take off your shoes, jacket, and heavy clothing because those will weigh you down. Next, lie on your back and try to float on the water. Fighting against the water will only tire you out. I have stopped the boat. Just paddle gently to it. Take your time. That way you will reach the boat without spending yourself and getting into trouble.
Telling persons with epilepsy and their family members about SUDEP is similar to the wise ferry captain coaching the passenger. The captain does not avoid discussing death the risk is obvious to everyone. What the captain does is reassuring and useful. He focuses his message upon providing the passenger with the practical skills the passenger needs to have the best opportunity to preserve his life.
We have advantage over the captain regarding SUDEP. The crisis has not occurred yet, so the conversation can (and must) begin with specific positive steps persons with epilepsy and their families can take to improve their overall outcomes. These would include explaining how medications work, their behavior in the bloodstream, therapeutic ranges, and the challenges to be faced in maintaining proper blood levels day in and day out. These include talking about first aid, about how lifestyle habits can improve the chance of seizure control, and the importance of identifying and avoiding seizure triggers. These include the unambiguous goal of good seizure control, with a clear plan for further diagnostic workups and/or treatment changes if current efforts are not successful. These include educating the person about medication side-effects and how to recognise toxicity so these can be reported and especially so these do not cause poor compliance.
Once patients and families possess the knowledge and skills they need to help protect life, then the physician is in the ideal position to introduce SUDEP as constructive therapy. SUDEP provides the physician with a compelling opportunity to illustrate why proper medical self-management skills are so valuable to the person and family. While these skills are designed to prevent seizures, they also afford important protections against more rare and serious complications in epilepsy, including SUDEP and status. The take home message, Practising these skills daily can reduce your risk of harm from epilepsy. That puts your future in your control.
So what does this mean for real world medical practices? First, patient and families can handle the discussion of SUDEP and other epilepsy risks when presented properly. Second, the discussion of SUDEP must be preceded by a boatload of patient and family education that provides the knowledge and practical skills needed. This understanding allows them to cope medically and psychologically with the knowledge of SUDEP. Third, knowing epilepsy carries risk is what cements patient and family skills into daily practice and insures better therapeutic outcomes. Finally, the time required to teach every family is not practical for the physician. Specially trained support personnel, such as nurses, health educators, and epilepsy association staff are the key to providing this care. Add them to your practice.
Robert J Mittan, Ph.D. Seizures & Epilepsy Education (S.E.E.) Catalina Rofloc Mittan, Former Executive Director,Los Angeles County Epilepsy Society
Children with epilepsy have an increased risk of death but this is largely due to the underlying neurological disorder. In contrast, SUDEP is very rare in children (1-2 per 10,000 patient years) (Camfield & Camfield 2005); neurologically normal children are not at increased risk of death compared to their peers. Of course, these figures are little comfort to parents, many of whom are terrified by SUDEP.
There is no good evidence to guide prevention of SUDEP. Close supervision has been suggested, but in practice this should be combined with training in respiratory stimulation or even in respiratory support (Langan, Nashef & Sander 2000). However, children, especially adolescents, strive for independence and so intrusive supervision for otherwise healthy children is impracticable and mostly undesirable.
Despite the lack of preventative measures, many clinicians report that bereaved relatives frequently express anger that SUDEP had not been discussed with them. However, we do not know if relatives of patients who have not died of SUDEP feel the same.
Disclosure of SUDEP information to patients has been recently highlighted in medico-legal cases and by epilepsy management guidelines. The UK National Institute of Clinical Excellence guideline (Stokes et al. 2004) suggests: Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the individuals relative risk of SUDEP should be part of the counselling checklist for people with epilepsy and their families and/or carers. However, it is unclear how this should best be implemented, and whether an individual at low risk benefits by being so informed.
In considering possible negligence claims, Beran (2004) considered the paramount issue to be whether advising a patient of SUDEP would overcome a material risk inherent in the treatment of their illness. The uncertainty surrounding mechanisms and effectiveness of potential prevention options precludes sound, evidence-based judgements about specified interventions. Thus, an informed patient and his/her family are aware of the potential risk of SUDEP but have no certain ways to prevent it.
Paternalism is nowadays frowned upon, and patient autonomy applauded; many clinicians opt for full disclosure. The English requirement to copy clinical letters to patients epitomises this new approach. Beran however, argues that this ignores the right not to know; unsought knowledge may cause patient and/or family distress, and even prompt negligence claims. Many patients, including children and adolescents fear dying and many erroneously believe that their risk of death is very high; here a detailed SUDEP discussion may actually be reassuring.
So, should we tell children, adolescents and their families about SUDEP? We suggest an individual case-by-case approach, where some form of valued judgement is inevitable. Those actively seeking information (children, adolescents or parents) should be informed in a frank and reassuring way, highlighting the low risk. We do not feel that patients and families should be bombarded with unwelcome information at diagnosis. The decision to discuss SUDEP should be regularly reviewed and documented. Written and website information should be available for those who seek it.
Charlotte Lawthorn & Phil EM SmithEpilepsy Unit, University Hospital of Wales, Cardiff
Over 15 years I have lost many patients to SUDEP. In the old days of long waiting lists people would sometimes die whilst waiting for scans or inpatient monitoring prior to surgery. But SUDEP occurs in many situations. There were patients I had seen perhaps only once after a single seizure and there were patients I hadnt seen for a long time, who had been, as far as I knew, quite well. On average, 6-10 patients of mine have died from this every year.
It is difficult to describe the feeling that you have as a neurologist taking care of someone when this happens. First, you are conscious of what an awful event it is for those closely involved, but there is no doubt that you feel a lot of guilt and responsibility. This is particularly the case if the person had persistent seizures no matter what treatment was tried. It might even be harder though when the person had seemed well controlled.
Sometimes SUDEP occurred where I had given strong warnings that it was possible yet people hadnt complied with medications or lifestyle advice. However, because it has sometimes happened out of the blue in patients who had been taking good care of things, I am less convinced that it does a lot of good to make patients feel responsible for this. Bereavement is even more difficult for a family to deal with when they think that if they had pushed their spouse or child a little harder to behave that bit better it would have saved them. Im not sure this is true.
I try to contact all the families after hearing of such a death. Once I would hear from the Coroner first but fortunately this is less common now because of greater awareness of SUDEP. Police or ambulance paramedics often ring me from the scene and I have even spoken to families at that time but it is a harrowing experience and not one where I think I provided much benefit.
Because of the way these deaths have occurred, I have become less dogmatic in explaining to people that they are really in control of preventing this. Good seizure control is an important element but there is so much we dont know about this condition that it is very hard to provide specific advice. Certainly, I alert people to the possibility of SUDEP and I generally try to bring it up at the time of first diagnosis. I explain that not treating asthma or diabetes can have serious consequences and the same applies to epilepsy. Most people can grasp that. Put in these terms people react to this information very well. It is much harder for people who have lived with epilepsy for a very long time and not heard of SUDEP, to suddenly be confronted with it. That is a difficult situation and one that generates a lot of anger. Nevertheless, it is critical for people to understand that this is a possible complication of epilepsy while keeping in mind that it is still a relatively rare occurrence. Once again, the comparison with asthma is a good one. People who have very well controlled asthma can have attacks that are fatal, even those who take good care of their condition.
I dont think SUDEP has changed the way I manage seizures. The aim is always to try and get complete control of convulsions and that remains the case. One of the limiting aspects of epilepsy is the fact that it is so random. Seizures cant be predicted and it is this unpredictability, which causes most of the disability. SUDEP is much the same. It is an unpredictable development which, whilst relatively rare, can occur at any time in the course of illness and sometimes even in those whose seizures appear to be very well controlled. This causes much anxiety; the combination of an unpredictable event with such devastating consequences. I think that speaking with families who have lived through this is one of the hardest things Ive ever done. The tragedy of the situation is compounded in that we know so little about it and so little research is undertaken.
Mark CookVictorian Epilepsy Centre, St Vincents Hospital, Melbourne, Australia
The epilepsy community is striving to change the public discourse about seizures and draw attention to epilepsy as a health problem that can yield serious and devastating consequences. Two years ago, the Epilepsy Foundation, the American Epilepsy Society (AES), the National Centre of Epilepsy Centres, the Centres for Disease Control and Prevention, and the Chronic Disease Directors sponsored a conference, Living Well with Epilepsy II, to craft a comprehensive public health strategy for epilepsy in the United States. Recommendations highlighted the need for greater research and understanding of epilepsy-related mortality, including sudden unexpected death in epilepsy. In particular, recommendations called for identification of risk factors for mortality using incident cohorts, increasing basic science research to understand the pathophysiology of SUDEP and other causes of death, facilitating research by creating databases of autopsy findings, and encouraging the use of brain bank resources.
Conference participants also recognised the lack of knowledge about SUDEP. This lack of knowledge may stem from, and in turn lead to, a serious lack of communication between patients, families and providers about this problem. The epilepsy and public health communities were challenged to change this, calling for increased educational efforts among all audiences and the development of effective interventions and support systems for families who have lost a loved one with seizures.
The Living Well with Epilepsy II Conference highlighted critical gaps in what is known, what is needed, and what is talked about. Unfortunately, these gaps remain and can be seen in the level of concern and questions raised by patients and families, the limited number of educational materials or programs, and the extent of research in this area. The Epilepsy Foundation website (www.epilepsyfoundation.org) reflects public concerns about epilepsy a large number of people are talking publicly about SUDEP in online community groups, story boards that honor loved ones who have died from seizures, and in general educational articles. The level of discussion was surprisingly passionate, with people searching for answers from anyone who could help. Consumer website information identifies some risks of seizures, but tools to help patients and families assess their risks are still lacking. These concerns are repeated in many clinical practices across the country as families of people who have died from SUDEP question why they were not forewarned of this risk.
On professional websites, the discussions are much quieter. The American Association of Neuroscience Nurses website has limited content addressing epilepsy, and nothing that addresses SUDEP. A review of the professional journal contents over the past three years reveals a similar lack of attention. This lack of information could pertain to the fact that this is not an epilepsy-specific organisation and SUDEP may not be perceived as a critical educational need for their members. It could also mean that nurses are not comfortable discussing this area or do not have the expertise to address it.
To examine this facet further, the website of the American Epilepsy Society was examined. What SUDEP information existed was unfortunately limited and not readily available. For example, archived abstracts for 2000-2003 yielded only 23 addressing SUDEP in some way, yet over 100 on mortality in general. There were no nursing abstracts addressing care or support of patients and families coping with death from epilepsy. Excellent articles exploring the scope and known risk factors of SUDEP were found in the AES journal, Epilepsy Currents, but SUDEP was not included in the educational program for medical residents and nurses. Additionally, SUDEP has not been a topic of a major plenary in recent years. Educational teleconferences offered to AES members and non-members (including nurses, social workers, psychologists, or pharmacologists) have not addressed SUDEP or mortality. These findings were surprising and suggest that we are not educating our colleagues about one of the main concerns for people with epilepsy.
Despite the questions raised by people with epilepsy and their families, some health care professionals question whether they should tell people about SUDEP for fear of worrying them needlessly. Professionals struggle with how to address these safety and mortality risks while balancing concerns of overprotection. Educational efforts also suffer from not knowing what preventive strategies, if any, should be stressed.
This brief perspective on SUDEP focused on the gaps in research, education, and communication. To eliminate these gaps, nurses and other caregivers who are on the front line must be given education and resources to address patient and family needs appropriately. Nursing and other behavioral science researchers must also develop research agendas that will examine their role in death and epilepsy, and identify strategies for risk assessment and prevention, health promotion and communication, and coping.
Patricia Osborne ShaferEpilepsy Nurse Specialist, Beth Israel Deacoress Medical Centre, Boston, MassachusettsJoan K AustinDistinguished Professor, Indiana University School of Nursing, Indianapolis, Indiana
I had uncontrolled seizures for many years never realising that people could die from a seizure. Being diagnosed as a child I wasnt told about the risks of sleep deprivation or high alcohol intake so during my early adulthood years I was doing both, not knowing about the possible consequences. I had frequent seizures but I never considered this to be a serious condition just something I had to accept.
My seizures were never controlled by medication and there were times that I felt like coming off the 3 or 4 different drugs I was taking; they didnt seem to help much, but something held me back. I was eventually offered epilepsy surgery and in preparing for the operation I was informed about the risks including death. This was the first time I had ever thought of that possibility. I considered the risk, but it did not stop me going ahead.
The surgery brought me into contact with different doctors and epilepsy counsellors and for the first time I began to learn about epilepsy. Learning about my condition gave me a sense of confidence and positive self-esteem. Some of the things I discovered about epilepsy and its treatment were not easy to hear, and when a young man I knew through the surgery program subsequently died as the result of a seizure, the issue of death really hit home. However, I dont live in fear of death. Now I know about epilepsy I make choices to take care of myself. I strongly believe people have the right to know about all aspects of their condition.
Now, working as an epilepsy counsellor, I often speak with people who are newly diagnosed. For many, the decision to take medication is a huge one. If they are not aware of the dangers of seizures as well as the side-effects of medication I do not feel that their decisions are truly informed. Informing patients does not mean simply labelling their condition and giving them a list of risks. They need a broad base of information so they can put the risks into context. The information needs to be clear and people must feel comfortable to ask all their questions without feeling foolish. This takes time and understanding.
SUDEP is essentially an unavoidable complication of epilepsy. It is not experienced as a consequence of something which the doctor has, or has not, done. A recent audit of a single clinics experience of SUDEP identified the most susceptible individuals as young males with focal epilepsy treated with polypharmacy (Beran et al. 2004). In this particular study there was no relationship between SUDEP and left or right handedness, use of alcohol nor deterioration of epilepsy at the time of death. Despite these findings the very next case of SUDEP, encountered within this practice, was that of a healthy young female with primary generalised seizures treated with monotherapy.
The reason for the above background information is to reinforce the notion that there cannot be a material risk, which is the doctors unequivocal responsibility to divulge within the common law legal system. The Australian case of Rogers v Whitaker cast in stone the doctors responsibility to discuss material risks with patients so as to protect them with the capacity of informed consent to propose treatments. It follows that the doctor cannot be considered negligent for failure to discuss SUDEP with a patient who has not asked questions relevant to it, as there are no material risks involved.
What is also apparent from the above discussion of a single practice audit is that the definition of propensity to SUDEP is not an absolute domain. While the audit reinforced the popular conception of what constitutes the higher risk population, the very next case defied all these accepted standards. To have advised this young lady that she was not at risk of SUDEP may have been deemed both irresponsible and potentially negligent in the light of her subsequent demise.
Should a patient ask pertinent questions, relevant to SUDEP, then the situation is quite different. The doctor is the accepted expert and thus, if asked questions, has both a duty of care and an ethical responsibility, to provide truthful answers to the best of his/her ability. If incapable of providing adequate answers, the doctor has a responsibility to either refer the patient to a better informed specialist or to an appropriate source of information.
Where the patient has not asked any questions regarding SUDEP, and there is no material obligation to discuss issues pertinent to SUDEP, then there emerges a question of the patients unassailable right not to be advised about it. To discuss a condition for which there is no definable remedy, and where such discussion may evoke fear and impair quality of life for both the patient and his/her relatives, there may be raised questions of negligence. As the doctor cannot adequately protect against SUDEP, it is argued that the doctor has no obligation to discuss the condition, unless such explanation is sought by the patient. To discuss it without consent from the patient may significantly destroy quality of life and may be grounds for litigation against that doctor.
The material discussed thus far has not been subjected to the adversarial debate within the courts. It merely reflects conjecture up until such time as the opinions expressed have been tested by the judiciary. The purpose of this discussion is to air the competing views within the legal debate rather than to provide absolute answers.
The final issue, when considering legal questions relating to SUDEP, focuses upon the doctors obvious duty of care to all patients under his/her management. The doctor has an obligation to provide optimal care to patients and to ensure that he/she is capable of offering a standard of care expected from similarly qualified professionals. The level of what constitutes such care was based upon the standards provided by a body of doctors, considered to be the peers of the doctor in question, as was determined by the Bolam Principle. This meant that the doctor could base his/her behaviour on that expected from similarly qualified colleagues.
This standard of care was questioned subsequent to Rogers v Whitaker and it was held that it was the role of the courts to define what constituted an acceptable standard of care.
With an explosion of litigation and the perilous state of one of the medical defence organisations (medical indemnity insurer) there was a concerted effort to revisit tort law and to reinstate the concept of the Bolam Principle. Again this will require court decision to fully define what is the current state of practice but what is apparent is that doctors will have to practice defensive medicine and will need to respect the duty of care owed to their patients. In other words, one cannot divorce legal considerations of SUDEP from the broader issues of legal expectation in the treatment of epilepsy as a whole.
Roy G Beran Professor, School of Medicine, Griffith University Director,Strategic Health Evaluators Neurologist, Liverpool Hospital, Australia
The law on medical negligence in the UK relies heavily on the Bolam test whereby a doctor is not negligent (i.e. does not breach the legal standard of care) where their practice is supported by a reasonable body of similar professionals. The test has been applied to the provision of information to patients as well as in diagnosis and treatment. Further, following the Bolitho case, any practice must also be justifiable on a logical basis and doctors must have considered the risks and benefits of competing options. Logical justification of any medical practice must reflect any advances in medical knowledge rather than a residual adherence to outof-date ideas. Thus, the Court may test the medical evidence offered by parties in litigation in order to reach its own conclusions. It may consider not only the magnitude of risk, but also the seriousness of the consequences, the ease by which the risk might be avoided, the resource implications of such avoidance, and the risk of alternative interventions.
Regarding SUDEP, while a small number of medical practitioners appear to oppose the provision of any information on risk, there is a sizeable body of practitioners who believe the contrary. Whether that small number who oppose the provision of information can now be regarded as a reasonable body of opinion is debateable and would be a matter of evidence before the court in a damages claim for medical negligence. The court would be entitled to consider the available knowledge base on SUDEP and in particular on the nature of risk. In the UK, the finding of the National Sentinel Clinical Audit of Epilepsy-Related Death (Hanna 2002) that SUDEP is causally related to continuing seizures (of a variety of types) may constitute strong evidence that SUDEP is potentially preventable insofar as continuing seizures are often amenable to intervention. In addition, there is an extant literature on possible risk categories, precautions and interventions, which also suggests the possibility of precautions and interventions to avoid SUDEP. The court would also consider the potential seriousness of the consequences of not informing a patient of risk which, in the case of SUDEP, is likely to be an influential factor.
In addition, any failure by doctors to provide information on the risks of epilepsy death may be incompatible with human rights protections. Existing rights to life and to family life protections, as well as prohibitions on degrading treatment (such as treatment without informed consent), are likely to impact on any assessment of the appropriateness of medical practice. Such a failure is clearly incompatible with existing clinical guidelines on the management of epilepsy such as the NICE guidelines in England and Wales (2004) and the SIGN guidelines in Scotland (2003), both of which categorise information on SUDEP as an essential element of information provision. The increasing number and importance of clinical guidelines assist the Court in assessing what amounts to a reasonable standard of care.
Given that there has been only one judicial determination in the UK relating to SUDEP, it is prudent to consider the approach taken by the court in that case to the issue of information provision. The determination issued by Sheriff Taylor in 2002 in the Fatal Accident Inquiry into the death of 17 year old Colette Findlay provides clear guidance for doctors on this matter (Taylor 2002). The court accepted evidence that SUDEP was a real risk for individuals whose seizures were not fully controlled. The determination acknowledged that precautions can be taken to minimise this risk. These precautions include controlling the seizures, altering sleeping arrangements, and using alarms. Providing such information was viewed as a reasonable precaution to prevent death. Consequently, Sheriff Taylor determined that in the vast majority of cases patients and/or their families should be told about the risk of SUDEP.
Given this determination, doctors would be well advised in almost every circumstance to advise patients and their families about risk and give information on possible precautions. Indeed, it is arguable that the case for providing information on risk has been strengthened since this court heard its evidence by the findings of the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002).
It is worth stressing the distinction between legal and medical definitions of proof civil courts will assess evidence on a balance of probabilities rather than scientific certainty. The court will assess whether on a balance of probabilities there was a departure from the standard of reasonable care and whether a death would have been avoided. In the absence of information on risk, individuals and their families lose the chance to take potentially preventative measures. As Sheriff Taylor (2002) noted:
The risks of sudden death in epilepsy should have been explained to them. There should have been a discussion as to how Colettes condition might be managed. Issues such as apnoea alarms to detect any cessation of breathing, sleeping in the company of another adult and other similar measures should have been discussed. I accept that there are pros and cons about taking such measures, but there ought to have been an informed discussion. If such measures were not to be taken, then it should have been a deliberate, conscious decision as opposed to a decision by default.
It is sometimes argued that a doctors duty of care requires open and frank discussion of SUDEP with patients who seek information. However, to rely on patients seeking information on risk is an illogical (if commonly held) position it requires that patients know about risk in order to raise the issue. While some individuals wish to know very little information about risk, they should be offered information and its decline recorded, albeit that opportunity must be provided to revisit the issue where their wishes change. Additional speculation on this matter might look to the potential liability for harm to carers who suffer the shock and trauma of losing a loved one to SUDEP.
In any event, the strongest argument for the provision of information on the risk of SUDEP may well be a moral one in terms of rights to information or one based on good medical practice in empowering patients to deal with risk. Doctors should, however, be mindful of the real possibility of legal liability.
Robert CarrSolicitor-Advocate at Anderson Strathern and a Law Society of Scotland Accredited Specialist in Medical Negligence and Personal Injury
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