Jess' Barnett: her story of Medical Error Mar 14. 2012 | Comments (1)
Our Jess, forever 17
We were a family of 5, but now there are only 4. Our 17-year old daughter, Jess, died almost five years ago from sudden cardiac death, but ultimately she died from the arrogance and indifference of diagnostic error.
For four years we visited our local children's hospital regularly, looking for the answer to Jess' fainting/seizure episodes which started when she was 12. Initially we were told it was epilepsy, but after a year on meds with no improvement, they gave up this diagnosis and looked for something else. We approached them with the possibility of Long QT Syndrome, a heart arrhythmia problem that masquerades as epilepsy, with one big difference; LQTS is potentially fatal. After doing two work-ups in as many years they were positive it was not LQTS, but we still believed that it was, and pushed for repeated testing. From that point on, we were label as a 'nuisance family', and the doctors now believed that Jess' problem was one of mental health and told us they could do no more for us. And ten months after her last appointment there, she died... of LQTS.
In the months directly after Jess' death, we met with the CEO of one hospital involved in her case several times, and 2 of her 4 doctors, once. The hospital's internal review found that very little could have been done differently in this case. At this time the Medical Examiner's report was not complete and although the hospital knew what had really happened, we were at a disadvantage until the ME's report was completed, 15 months after Jess' death, and revealed the extent of the medical harm. The report was damning. So many times someone could have saved our daughter, so many times...
Our family pursued litigation, and settled out of court after two years of further emotional trauma. The doctor's defense lawyers agreed that it was one of the worst cases of malpractice they had seen in a long time. The Canadian Medical Protection Association (the insurance company and defense lawyers for physicians) use morally-bankrupt strategical tactics that stop at nothing, hoping to force the plaintiffs to drop the suit. And more often than not, they succeed, as a very few people every take legal action, a miniscule number of cases ever go to trial (winning, well forget that!), and more than half people who file legal action, drop the suit before it is even settled (CMPA Sats 2008). If Canadians, or even the doctors themselves, knew how the CMPA treated people... This process is lose-lose, we never sit face-to-face with the doctors involved, their lawyers won't let us, and therefore, no discussion takes place, no answers gathered to prevent this error from happening again, no apology or offering forgiveness either. Don't we all need to heal, doctors included? We need to have a more honest, open framework for resolving conflicts such as medical error, and to that end, I am studying conflict resolution in hopes that, when the time is right, I will have those skills to bring to the table. The tide is turning all over the world in how we resolve conflict, it's only a matter of time before it is used, instead of adversarial litigation, in cases of medical error. And when it does, I'll be ready.
We have worked very hard in the past 5 years to raise awareness of sudden cardiac death. Please take the time to learn the warning signs of this 3rd highest killer of people under 35, our family is featured among others.
Our other passion, is medical error and reducing these unacceptable rates, and we're not naive, we have a long, long road ahead of us, but with your help we will get there sooner, rather than later. I've created a facebook group for those who find healing in sharing their story, in truly being heard.
Standing together we will save lives. Let's do it for Jess, let's do it for all those who have gone after her, and perhaps most importantly, let's do it for all those who are destined to walk her journey.
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