This week is Patient Safety Awareness Week 2019. As most of you know our son Rory died in April 2012. Although Rory died from sepsis, Rory, like many other sepsis victims also died from medical error. Medical error, the term is clinical, almost abstract. As a parent of someone who died from medical error, I can tell you there is nothing clinical or abstract about your loved one dying this way. The knowledge that someone or, as in Rory’s case, many people, could have said or done something to save him will haunt us until the day we die. Rory was an innocent 12 year-old-child, for God’s Sake, he told everyone how he was feeling, he trusted the medical professionals who were “listening” to him. Our family asked for help-and our family were failed.
The New York Times journalist Jim Dwyer commented in an article for Irish America Magazine in 2013 ” Every single possible bad thing that could happen, happened, to Rory and resulted in accelerating his decline. Nobody intervened when intervention might have helped. Every time there was a chance to do something for Rory there were steps that weren’t taken and people who didn’t know that there was a problem.”
As I’m writing this I’m thinking also of David and Katie and Emily and Isabella and Jeff and Wes and so many other victims families that are suffering during this “Patient Safety Awareness Week.”
Yes, be your own advocate-we strongly advise people to empower themselves and others by asking questions and making sure tests are reviewed and that health professionals are practicing good hygiene, we write about this all the time.
But, consider something more; consider that health professionals are human and sometimes they will not correct course, as happened in our case. Consider that there are some doctors and other professionals who will not accept being questioned.
I, for one, would love to see more honesty in this area. This is not to bash health professionals, I hold too many in high regard to do that. But there is much advice being given this week about being your own advocate, and I also want to read some honest articles from medical professionals who have erred. To err is human, but we need to hear people say “we made a mistake” and learn, we have much to learn.
In 2013 when interviewed for the same article in Irish America Magazine I spoke about our experience during Rory’s care and said:
“Pediatric emergency rooms are scary places for children and family. “Parents need to have a clear communication channel available to them. They need to be informed as to who is the doctor in charge of their child’s care, what blood tests or other tests have been ordered, their results, the diagnosis being made and any other possible diagnosis being considered and what change in the patient’s condition would require that they return immediately to the ED. They also need to be given a telephone number for follow-up questions should changes they are concerned about take place.”
In New York State as a result of Rory’s death, the Rory Staunton Foundation worked with the State Health Department to introduce the Parents Bill of Rights which mandates a clear level of communication in Pediatric Emergency Rooms throughout the state, it is a checklist and a stop sign for medical professionals. We would dearly love to see this in every state.
As someone wrote: “Neglect killed Rory. The disease was just the ammunition.”