One in a million

The conference I attended in Boston was interesting. It involves way to get families more involved in and welcomed into the medical decision making process involving their children, and in the case of those who are able, getting the patients themselves involved. It was a conference of mostly doctors with nursing administration and one bedside nurse there as well as about four family representatives (I was one of those). The fact that families are even included in this process is a good sign of thing to come. It is a culture shift for many medical providers and for many families as well.

One of the many things that came out of this was that medical personnel need to avoid the use of medical jargon when dealing with families. I wholeheartedly agree with this. Things like acronyms and abbreviations of medical terms tend to exclude those who don't understand the reference. Medical terms are necessary, but the jargon that accompanies them is not.

One presenter also warned against the use of "numeracy." I had to ask the woman next to me what that meant. It is defined as "the ability to understand and work with numbers," and from context I understood it to mean that medical people need to stop communicating in numbers when speaking to families. The whole idea of including families is to open the two way lines of communication and using stats and numbers can preclude that.  Many folks cannot comprehend the numeracy and therefor lose the message being conveyed and cannot ask relevant questions etc, which shuts down meaningful communication.

I smiled to myself because I remember calling a doctor out on this- even though I didn't know what it was called -  very early in Maggie's life.  During her course in the NICU ( oops, that's jargon right there, that's the Neonatal intensive care unit) the doctors were trying to convey Maggie's situation. While I don't remember the numbers specifically, the conversations went something like this.

"only 1 in 100,000 babies are born with this, but of that .01%, 3/5 will have XXX complication. (Maggie had it). Of those with XXX, 2/3 will have YYY complication (Maggie had it) of those with YYY, 1 in 7 will have ZZZ complication. (Maggie had it)
  
I was completely lost after the first statistic and told him to stop. I said, " I do NOT care how many people DON'T have this. I get it, it's rare. She's the 1, She's ALWAYS the one. I'm going to buy her a lotto ticket because she's ALWAYS the one.  I just want to know what the plan is to deal with it."

I shut down the numbers game and focused back on straight communication, mostly because I needed to understand. Seems I was just 20 years ahead of my time.

And Maggie proved early that she was One in a Million.