A pedi hospice nurse on how she responds to parents' questions @ what end-of-life will look like …

so almost every single family member asked me what it's going to look like and how it's going to be and I try my very best based on diagnosis how how I can anticipate it and I say these are the things that I think is gonna happen but your child has always thrown curveballs at us because if your child there was a curveball and so I tell them very honestly if I were to guess this is what I'm gonna anticipate generally we can always promise that there will be a period that is the most agonizing for parents and I have been told recently that I don't do a great job of explaining how awful that is but I don't really have words to explain how awful that is and so I try I try my best to explain how awful it's gonna be that sort of there's a period where the child just goes unconscious and is essentially just from what it looks like to us just breathing and that period is agonizing for every single parent and I have no clue how long it's gonna last and kids can do it for hours and they have done it for days and that's the own that's the biggest part that I have trouble describing to parents is that period but I can only explain to them that unless it's a really rapid decline once we shut off the feeds and the fluids this is how long I'm anticipating and they will get sleepier and sleepier and open their eyes a little bit less and start moving a little bit less and then they will go into this period but there it sort of looks like a coma and parents hear it and then they ask me the question again the next time I come and so we go over it again and I think as a protection with anybody even if you're talking about a parent or a sibling that's approaching end-of-life you can only take in so much information at once oh and then sometimes I think they didn't take it and the next time they were like well when you said this and it was something that I would think is insignificant so can you explain what that means a little bit more or one parent does that and the other one it's like well obviously it means this and so I get that question all the time and I don't know if I ever answer it right I try to answer it to the best of my abilities and the best that I can answer it based on the child's diagnosis if I'm concerned about seizures I'll tell them that if I'm concerned about cardiac problems I'll tell them that whatever whatever it is and everybody asked for a timeline – and I know one's given me a crystal ball yet I've requested it but I try my very best again base on the tile that's in front of me to sort of give them a time line I can tell you time and time again what I expect your child's end-of-life to look like and I can picture it because I have pronounced 20-something kids but I don't think I could ever tell a parent what it's like gonna be like to watch that child die or to lose their child or to watch their child kind of slowly slip away through those stages and have it have enough meaning like my words wouldn't have enough weight at that point to have them understand and parents have been grateful that I've told them things in detail and parents have been upset that I tell them things in detail and then parents after I've been like you were completely wrong and I probably was there isn't really any way to fully prepare a parent for what's coming as much as I wish there was and I don't know I've wracked my brain on this ever after every single pronouncement and I don't know if there is a way to prepare them for that

Glenn Chapman

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