Serious illness in children-a nurse on creating space to do Advance Planning: Name it to Tame It.

so these conversations don't happen overnight I mean there have been families that are able to come to sort of a conclusion or at inclusion in one or two visits and I just had a situation recently where it lasted several months because we were kind of going back and forth and there are so many what-ifs and what would we do in this situation that it needs to be teased and teased out and actually a family member couldn't be present so he Skyped in for the conversation which I thought was really cool because he wanted to be present and we wanted to make sure he was present and his his ability to do that helped as soon as he came in onto the Skype the mom calm down instantly which I thought was really cool she was common with us but she definitely was emotionally uncomfortable and she heard his voice said which I thought was I thought was kind of an invaluable and it was cool to see that I didn't point it up so I didn't want her to be on control but I definitely I noticed that but I think going into the home and seeing families frequently and as frequently as they will tolerate it or or want us allows us to sort of create that space and have these conversations in my whole name entertainment thing is we give them permission and we've sort of put it out there because it's something everybody's thinking about but nobody says and so the name it to tame it is if we put it out in the room we can kind of tame it or comment down and it's it's never gonna be less awful with losing your child or chiming child declining is always horrific but if we can take some of the trauma out of it and some of the heightened emotions out of it by having conversations before I think it allows parents or my hope is that it allows parents to sort of just be present and be with them in the moment whether it's noticing a new decline or we have a new trait that's indicative of a decline or we're approaching end-of-life or we're having this really long scary seizure that we knew was probably coming they can just be a parent with their child as much as the situation allows rather than having to be the captain of the ship trying to make it all these crazy decisions in the in the moment if that makes sense

Glenn Chapman

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