Hi Jenn...those issues are so emotionally loaded. Personally, I made out an advanced directive, had a family meeting and discussed what I would want in the even that things looked bleak. Right now, I live on a vent...not CF related, neuro related but it changed my Advanced directives. Everytime another life changing health issue comes about, I make it a point to update my directives. My first directives were made prior to my vent...in it, I described that if I needed prolonged life support then let me go peacefully. Maybe you could ease your family into these issues gradually. Perhaps by first addressing an advanced directive and then go from there.
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">