Sabina Robin has worked in healthcare for over 24 years and has been a member of Patients for Patient Safety Canada and a WHO Patient Safety Champion since 2006. She has been active in patient safety and emphasizing the importance of disclosure since the untimely loss of infant daughter. Sabina has also contributed to the SHIFT to Safety work on the Deteriorating Patient Condition and the role of the patient and/or family member in supporting the recognition of clinical deterioration.
"Her life needs to mean so much more than her death…"
"We have to be greater than what we suffer. My wish for you is to become hope…."
In 2004 my daughter Mataya died as a result of a preventable adverse event. It irrevocably changed my life. Let me clarify that by saying it completely destroyed my life, my family and my identity. The onset was quick; Mataya was coming up to her 8-month milestone. Gosh how I love that age, they are just starting to develop their personality and character. It started on a Sunday and ended on a Wednesday.
Right from the beginning I felt like I was never being listened too. From Health Link who told me other than Mataya's gross amount of bruising she was asymptomatic and was advised to seek treatment in a clinic the next day. To the Paediatric Hematologist that wanted to send us home two and half hours away from any major city centre with oral Prednisone for a babe that had zero platelets, (she was diagnosed with ITP) that would not be elevating anytime soon as she had been given Motrin for the last two days for a fever. But most notably was the blatant disrespect I felt from the medical staff. From the lab techs to the nurses but mostly the resident that was charged with her care. No one was interested in what I had to say about my daughter or my concerns until it was too late. My questions were left unanswered or were seen as a challenge. Being a nurse myself I grew frustrated with not being listened too and then when I started questioning the diagnosis and treatment it made it worse. Instead of being a partner in my daughter's care, I was now the adversary. Her condition quickly spiralled out of control and by early Wednesday morning Mataya suffered an Intracranial Hemorrhage so significant that despite treatment and surgery, it left her brain dead. That was 14 years ago, a lifetime some might say, but I can live and breathe that moment like it was yesterday.
So, what has changed in Patient Safety in 14 years…? Well, "us" for starters. The collective "us" is a group of like-minded people with often tragic stories and outcomes that "should have never happened" wanting to make a difference, to make the care we receive safer for everyone.
Patients for Patients Safety Canada was born in 2006. A small group of individuals including myself taking an oath from the World Health Organization, making us Patient Safety Champions. I felt cautiously optimistic that we, I, could affect something, " …to be the change..". Creating Disclosure guidelines and principles was one of those great moments that was born out of necessity. Organizations being accountable and responsible for their actions, the missing apology. That's what was missing from not only my story but everyone else's. The culture itself is changing, the slow shift that was promised from my hero and mentor Jim Conway some 14 years earlier. Patient safety continues to grow and thrive where nurtured. It now is the accepted, it's mandated, it is now the goal. Many items still standout and that is where we roll up our sleeves and get to work. Preventable adverse events continue to increase despite our buy-in and acceptance of a safe and just culture. Failure to rescue remains one of the top root causes of adverse events. A greater focus on the recognition of a deteriorating patient demands a call to action. You see most errors are 20% commission, the rest are 80% omission. The collaboration between CPSI, HIROC, and myself dedicated to "the failure to recognize a deteriorating patient condition" highlights what is possible when patients are at the table, being fully engaged members of the healthcare team. Being involved from the first moment of contact, at each point of contact and throughout the entire organization.
In 14 years the worst moment of my life shaped me into the person I am today. I am a better mother, wife, nurse, and person after Mataya. She taught me everything, and everyone, has a purpose. There is always room for hope, that those who sow in tears will reap in joy, and that heaven is only a heartbeat away. I still have difficult days. But, I use my grief for good. I choose joy. I lean on those who have helped me weather the storm. She will live on forever because this is her legacy.
For more information:
To see Mataya's full story click here
To see the Deteriorating Patient Condition page on Shift to Safety click here