One thing I think that is important to note is that palliative care does not equal Hospice care or end-of-life care! I think, too often, people think you need palliative care when the child is terminal. Not true.
Exhibit A :) :
My role at the conference was to be part of a parent panel where we shared our stories, experiences with doctors and medical staff, and the meaning we discovered as a result of our experience. There was a lot of discussion throughout the day about the importance of family meetings, which are meetings with all of the child's involved medical providers where they present information...and at times, bad news.
We also did scenarios at each table (I was assigned to a table whose scenario was similar to my own experience), and we had great discussions about what should and should not be done in a family meeting. One of the biggest things was explaining medical terms in a clear (but not condescending) way; don't assume that everyone knows was DNR stands for, or what a "code" is. (DNR is Do Not Resuscitate, and a "code" is when someone goes into cardiac and/or respiratory arrest. If I said something wrong, my disclaimer is that I'm not a medical professional...I just play one on TV!) :)
The keynote speaker did a great job of sharing the urgency of palliative care. While excellent medical care is certainly important, palliative care allows those with a serious medical condition to feel supported. The key is great communication between the medical professionals and the families!
Given the nature of the topic, a good amount of the day also focused on end-of-life care and Hospice. Therefore, I faced topics I haven't had to deal with in a while....conversations about DNRs, pediatric Hospice, and coding had become a distant memory. It was very emotionally-draining, but in a good way. It's good to be raw once in a while. As strange as this may sound, this was a good reminder that we don't know how long we will have Abby, so we'd better make every minute count.
It was so refreshing to be at a conference that not only welcomed parent input, but centered around it. While palliative care is still "catching on," we're hoping that the momentum will grow now that so many people have been to the conference. It's a process, but I think that they are heading in the right direction!
I am blessed to have been a part of it. I certainly never considered that my life would have taken this turn, but I have really enjoyed this blessing in disguise.