How to Tell a Patient They Have Epilepsy
For a patient, an epilepsy diagnosis can be scary, and for early career physicians, giving the diagnosis can be just as frightening. Despite being one of the most common neurological conditions, impacting roughly 1 in 26 people over their lifetime1, epilepsy remains a fairly misunderstood condition, with depictions of seizures in pop culture inappropriately represented and not helping to alleviate any accompanying stigma. It becomes the job of the neurologist to be both educator and provider when relaying a new diagnosis of epilepsy. Below Jeremy Slater, MD, Chief Medical Officer of Stratus, gives budding neurologists advice on what to consider when presenting a new epilepsy diagnosis.
- State of mind. Many patients may experience a loss of consciousness when experiencing seizure events, while others may be unaware of the epileptic activity at all. This can lead patients to doubt the severity, or even the existence of their symptoms, since they just cannot remember the event. This becomes the first challenge to get patients to cooperate with treatment.
- Cooperation and compliance. A patient may see the physician as the expert, which can help boost the tendency to follow the treatment plan, but patients need to be involved and motivated in their treatment planning. To improve cooperation and compliance, physicians should find ways to connect with patients, using simple and direct language, and be honest about the treatment options and outcomes.
A typical (and simple) explanation of epilepsy: “Your brain operates using a kind of electricity. If you could see that activity, it would look chaotic, with electrical activity randomly firing off all over the place. That’s normal. It would look that way because each part of the brain is doing something different, and the brain is generally doing multiple things at the same time. If something triggers multiple areas of the brain to fire repeatedly in a non-chaotic, orderly, and synchronized fashion, that isn’t normal. In fact, that abnormal (synchronized) electrical activity is what defines a seizure – and while a seizure is happening, the brain cannot function normally. Treatments can help to prevent the neurons from misfiring and keep each part of the brain doing its own job.”
- Clear definitions. The terms epilepsy and seizures are commonly used interchangeably in colloquial discussions, but these are distinct within medicine and patients can often overlook this distinction. To avoid confusion, its advisable to define these terms for the patient. Anyone can have a seizure under the right circumstances or in response to certain external causes, but epilepsy is the recurrence of seizures absent of any external cause.
- Educate the patient on the (presumed) cause of the seizures. Some forms of epilepsy have better prognoses than others, and it is important to cover these with patients, and their caregivers, in specific terms. Not every epilepsy diagnosis is the same, but some require more specific precautions or have additional risks. If left unaddressed, patients may consult “Dr. Google”, and be confused about potential outcomes and treatment options. A lot of the patients’ questions or concerns may not pop into their head until after the appointment, so this is also a time to provide guidance to the patient on how best to find information online, highlighting which resources you would suggest for further information. The Epilepsy Foundation provides a number of good resources for patients.
- Bring in social support, when possible. When hearing of a new diagnosis, it is common for patients to go into a form of shock, preventing a clear memory of what was discussed or the rational mindset to ask important questions. Because of this, it is advised to speak to the patient’s family whenever possible. Medical privacy as well as social stigma may bar patients from sharing their diagnosis with others, but directly addressing this possibility and asking the patient if you could discuss this with their family, partner, etc. gives them the opportunity to build a support network around the diagnosis.
- Sudden unexpected death in epilepsy (SUDEP). Addressing this potential outcome can be controversial, as some may argue that it can cause unnecessary anxiety for new patients. However, it is a part of the diagnosis that we still know little about, and can seemingly impact any patient, especially noncompliant patients. Therefore, it is advised to address this honestly with the patient, putting the risks in terms they can understand.
- Message delivery. The most important part of the discussion is the way it is delivered. Respecting the patient’s reaction, being calm, understanding, and directly addressing concerns in an empathetic manner can greatly impact how the patient receives the information.
- England MJ, Liverman CT, Schultz AM, Strawbridge LM. Epilepsy across the spectrum: promoting health and understanding. A summary of the Institute of Medicine report. Epilepsy Behav. 2012;25(2):266-76. doi:10.1016/j.yebeh.2012.06.016