Spread the Word … Talk about SUDEP!

Photo: Dr. Elizabeth Donner

In last year's November eNewsletter I asked you to use Epilepsy Awareness Month in the US as an opportunity to talk about SUDEP.  Thirteen months later and just back from December's American Epilepsy Society annual meeting, talking about SUDEP is at the forefront of my mind again.

I recently had the opportunity to present a webinar on this topic, along with Dr. Nancy Collins, in follow up to our presentation at the 2012 Partners Against Mortality in Epilepsy (PAME) meeting[1].  Dr. Collins brings a very interesting perspective to the issue of SUDEP, as she is both an epilepsy specialist and a clinical ethicist.  With this experience, Dr. Collins applies an ethical framework to the issue of SUDEP disclosure.

What I learned from Dr. Collins is that there are theoretical principles that support physicians talking to their patients about SUDEP.  Included among these is the bioethical principle of autonomy, which calls for respect for the individual and their ability to make decisions with regard to their own health and future.  Informing individuals with epilepsy about SUDEP allows them to make fully informed decisions about their epilepsy care. 

Non-maleficence, another key bioethical principal, calls for the prevention of harm.  Research has demonstrated that the risk of SUDEP increases with the frequency of seizures and that adding effective medications for seizures can reduce SUDEP risk.  Armed with this information, if we do not inform people with epilepsy about their risk and how to reduce it, we are not respecting non-maleficence, the prevention of harm.

One of the most meaningful concepts is the importance of truth telling.  When physicians give people with epilepsy the truth about their condition, it builds trust in the doctor-patient relationship.  Talking about SUDEP risk may help people with epilepsy to understand the severity of their condition and it may also reassure them, when they learn they are doing all they can to lower their risk.  Either way, it allows for an honest discussion of their condition. 

During the webinar, we conducted an informal poll and discovered that among the individuals joining the webinar, who either had epilepsy or were a caregiver or family member to a person with epilepsy, only 40% had talked to the doctor about SUDEP and only 20% had talked to the doctor about how to reduce SUDEP risk.  While this survey was not rigorously conducted, I think it confirms that we still need to get people talking about SUDEP.

These numbers stand in contrast to research results recently presented in the journal Epilepsy & Behavior.  Dr. Rajesh RamachandranNair and colleagues conducted a qualitative study, interviewing parents of children with epilepsy and parents who had lost a child to SUDEP,  to investigate parental preferences about SUDEP disclosure.  The results were clear.  All parents interviewed wanted to know about SUDEP, regardless of their child’s level of risk and all wanted to hear about it from their child’s doctor.

These findings confirm the paramount importance of talking about SUDEP.  So, join me and help to spread the word.  Together we can make sense of SUDEP.

Note:

  1. SAVE THE DATE - June 19-22 2014, Minneapolis, MN, USA for the 2nd Partners Against Mortality in Epilepsy (PAME) meeting bringing together clinicians, researchers, families and support organizations to discuss death in epilepsy.  Online registration due to open January 2014.

 

Dr. Elizabeth Donner is a Pediatric Neurologist at the Hospital for Sick Children, Toronto and Associate Professor at the University of Toronto.  She conducts SUDEP research, is implementing a pediatric SUDEP registry and is a co-founder of SUDEP Aware.