My brother in law passed away unexpectedly last week in his sleep. He was thirty four. He left behind his wife, their five year old daughter, and six month old twins. The grief is sometimes so consuming, I have to remind myself to breathe.
His service was yesterday. As I maneuver through the thick fog of disbelief, sadness, and anger at his sudden absence from this world, I keep coming back to this: how did this happen?
I saw him three days before his death at our family’s Easter celebration. We sat on the couch together, passing his babies from one aunt or uncle to the next. When not holding either of the twins, we looked at pictures of them on his phone. He couldn’t get over how good his little boy looked in his Dodger blue hat. His smile was bright and his eyes as alive as ever.
Perhaps we will know what happened, once the results come back from the autopsy. In the meantime, my head spins with the disbelieving How? and jeering What if’s?
Having a career in healthcare improvement, the order of events make my heart ache-he had a seizure on Monday. He was hospitalized, and released to go home. Less than 12 hours later, he died.
My mother-in-law, in her own attempts to try and make sense of this nightmare, talks to me quietly at his reception about some research she’s been doing on sudden unexpected death in epilepsy or SUDEP.
SUDEP is defined as sudden, unexpected, nontraumatic, nondrowning death in an individual with epilepsy, witnessed or unwitnessed, in which postmortem examination does not reveal an anatomic or toxicologic cause for the death.
-from Sudden Unexpected Death in Epilepsy by Shahin Nouri, MD Director, Comprehensive Epilepsy Center, Vice Chief, Division of Neurology, New York Methodist Hospital
I don’t know the conversations that were had at the time of discharge. My brother in law fit most all the risk factors associated with SUDEP, and I can’t help but wonder if the risks were communicated well. If his providers were taking into account his whole situation: his recent seizure, having twins, lack of sleep, increased stress–and really putting the puzzle pieces together.
SUDEP is now a growth area in epilepsy research. However, much remains to be done on prevention and risk communication.–SUDEP Aware
For now, it’s all speculation. But it solidifies and makes even more acute the necessity and urgency to increase awareness of the importance of communication to patients within the healthcare system, to look outside the blinding walls of standard protocol, to bring patients and their families as partners deep into the plan of care, and to treat the entire person, taking into account their unique life circumstances.
It also reminds me of the incredible raw vulnerability our patients and their families are experiencing during the traumatic times that bring them into our walls, and how the smallest gestures of kindness feel like an avalanche of love, but wherein the opposite is also true: lack of sensitivity or flippant actions or remarks of people less aware of the vulnerability of the situation feel all the more cruel.
Communication. Compassion. Everything is at stake.
My call to action today is to remember the fragility of life, that it can be taken at any moment, and in light of that to appreciate and tell your family and friends how awesome they are.