Mom Shares Daughter's Death & Need for Disclosure

Late last year I did a disclosure presentation for an insurer, and immediately before my speech they shared a video with the audience entitled "Jess' Story." The video was the tragic story of a young woman - Jessica Barnett, or Jess - who died because her doctors did not listen, and then litigation - not disclosure - followed. The video was narrated from the perspective of the now-deceased Jess and it was incredibly powerful.  It's one of those videos that just makes you stop and watch.  Over 40,000 people have viewed this video on YouTube, and it has become a teaching tool for medical and nursing students. Well, this summer I met Jess' Mom, Tanya, via Facebook, and I invited her to share her story with the Sorry Works! audience.  Below is the text given to us by Tanya last week. Included in the text is the link to the same video I saw before my speech for the insurer.

Chasing Safe -- Honoring a daughter taken by medical harm by Tanya Rempel Barnett

I am here, and she is there. And there are times when sharing her story, the weight of it all, pulls me down, even under. Only sometimes, but it does. Her goneness has left a void that grows with each passing year. Sometimes its silence is deafening, and sometimes it speaks to me softly. Sometimes it roars, guttural in sound. And this void, and my pain, are entwined in the push-pull of its continual movement.

Although the part of her dying, what lead to it and how it was handled, is a fixed point in time that separated our lives into before and into after. And my journey, like anyone's, is ever evolving. Pieces are added as they are lived, experiences processed and learned from (when courage can be found), and thoughts of all those yet-to-be moments imagined, some not. A reach/pull-back existence is one that I've been left with; I reach out to others, live and love, press for changes, then retreat to heal and recharge. It's cyclical in nature, this reaching and pulling back. And it needs to be for me to honour her in this way.

I'm a visual person, and that's why chose to create a video of Jess' ill-fated journey through healthcare. Although I've done extensive writings around her death and the needed changes to save lives, I love the deeper connection made through these images between my daughter and the viewer. The video brings everything together in one place; the how, what and why, all wrapped up in the power an emotional connection. So, click on the link below to view her story, but before you do, there are a couple of things you need to know about my daughter.

• Her name is Jess, and it always will be
• There would have been 18 candles on her cake later that week
• She hated salmon, but loved jujubes, and really loved cheesecake!
• Her parents will always have 3 children
• Just cause you can't see her, doesn't mean she isn't still here
• Although they don't show it, at times her brother and sister still struggle
• She loved children, and she was the best kind of friend
• She could be loud, really loud!
• People always say she was kind and loving (sometimes annoying too...)
• She is honoured each time her story is viewed, each time a doc thinks twice
• Jess is like an echo; still here long after the source is gone

https://www.youtube.com/watch?v=t6mr3gxXx64

You're back. Catch your breath, and then we'll go on.

So, it's sad, and needless, isn't it? And sometimes, even now, I wonder how I got to this place, how my life came to be resting on the edge of this challenge. Looking at my patient safety contributions over the past seven years since her death, it just makes my head hurt... and my heart weeps for her and all that's been lost. At times, my spirit is tired, so tired of dealing with it all. But part of me is also proud of what I've done, and I'm hoping Jess sees it that way too.

So, here's what I've done so far:

I launched email-writing campaigns (some even replied), had meetings (and more meetings) with patient safety folks, government officials, physicians, hospital CEOs, other families who had been harmed, anyone who showed an interest. I raised awareness as I talked with people in waiting rooms, and online, in planes and at bus stops. I even continued a conversation with a woman in the restroom, slipping my 'I am Jessica' card under the stall. Anyone, I spoke with anyone who'd listen, anyone who didn't walk away. I joined Facebook groups, asked questions, and researched late into the night. I created a set of recommendations relating to her care, which have been accepted by many I'm told, but not by her docs. I cried a lot too through these times, for my girl, and for the frustration of it all; why was I having to do this work in the midst of my grief? I stood, fist at my sides, but soon realized, who better to do this than the mamma bears of this world. And my resolve would be strengthened.

I spoke at conferences, gave media interviews (eventually becoming a go-to person in our province for comments about safer care), encouraging those who'd also been harmed to share stories and strategies, helping them feel supported, and heard (which often doesn't happen in healthcare). I worked independently and with patient safety groups; Patients For Patient Safety Canada and the Canadian Patient Safety Institute (CPSI ), and The Empowered Patient Coalition. Many articles and letters, and the beginning chapters of a book, were written and re-written. Word followed word until the screen became blurred (at times, I'll admit it, balance was fucked ). Art installations were imagined and dreamed into life. I built bridges between patient and provider (no torching by design). In the early years of my grief, I lead a bereavement group called , helping not only myself, but others to heal. I became a WHO patient safety champion. And wrote poetry, lots of poetry. And all the while, was supported by family, and special friends. And it takes a special kind of friend who's able to read the autopsy report of a child... it does, it really does.

I developed the website, and created a video of her story. And was one of many used by CPSI in helping to champion the patient's voice. I created word and video that gave a voyeuristic look into the life of a family dealing with the fallout of medical harm, and how this system continues to harm us. I watched with amazement, as Jess' video was viewed more than 40,000 times on YouTube! And even more so, when it became a teaching tool used in one country after another. It's been used at patient safety conferences on two continents, and in lectures to encourage med students to understand the real cost of medical harm. I've encouraged healthcare to embrace their own humanness of making mistakes (it's not if but when, and it's what you do with those mistakes that's important). And all the while my husband-slash-backer (emotional and financial), well, he had my back! Advocacy on this level, if we're honest, takes an incredible amount of time and energy, and headspace. And money; let's face it, someone had to work! He read every word that I wrote, listened to me anguish at the latest door closed, and cried with me over every photo used in her work. I offered forgiveness, first to myself, and then later to them. And like my husband says; it was much easier to forgive them for her death, than it was to forgive them for what happened after. As a counsellor I helped others to begin healing, and became a mediator in hopes of sparking a more healing process, an alternative to adversarial litigation for cases of malpractice. And one day we will, we really will. Deep breath...

I shake my head, and marvel at it all; where did the energy come from to advocate for those who could not? Where did the optimism, the perseverance, the glass-half-full mindset that continued to buoy me as door after door was slammed in my face, coupled with years of requests to meet with her doctors were denied, time and time and time again? And where did the strength come from that saw me climb out of the muck and the ooze of that dark hole of my grief? And where did I garner the strength to continue to live and love well, to remember I still had living children after all? And remember, I did this all while my grief sat heavy and sour with the weight of a stone rammed deep in my soul Where?

Where did it all come from?

Perhaps it was the unfairness of it all, the indifference we faced, and our real concern that more children would die if changes weren't made. Maybe it was even the 'don't you dare walk away from us!' indignity that kept me going back, and that smoldering desire to be heard was kindled into this raging bonfire called advocacy. And it's reasonable to suspect that my naivety in thinking it would be easier than it was, pushed me forward, sent me on. For I'm guessing that if we really knew what we faced, most of us advocates would've stayed home on the day of the big race.

All of these reasons have merit, they do. But the one that made top of my list (I'm sure you can guess) as to why I became the 'tortoise' (not the hare) in this race, was to honour my girl, who's loud I've now borrowed. And thanks to her, I'm no longer afraid, and I'm no longer quiet.

****************

Thank you for sharing, Tanya.