URGANT ADVICE REGARDING DIALYSIS

OK, here's a couple of ideas that might help... Sounds like you might already know a bit about this but just in case I'll write a fairly in depth version...

At childrens hospitals with young children what they do is to act out scenarios with a toy.  So for example in this case it might be Teddy feels ill, Teddy has a needle, lies down for a bit getting his blood washed, and Teddy feels much better.  All done with as realistic equipment as possible: there are actually toy tubes etc available, but real ones could be used if you can get hold of them.  The 'toy' in this case you might change to an object of interest.  Eg if he likes trains you could have a sick toy train!  By the way, at Gt Ormond St (where I used to volunteer and took part in some of these kinds of scenarios) very young children were involved in decision making in some cases.

You could use a training method called shaping: this is from my experience with animals, but it does work on humans too!  Basically you break what you want down into small stages and do lots of repeats at each stage, with rewards, only very gradually working towards the full behavior.  So you might start with just showing a syringe, then rewarding him.  Repeat several times. Then touching his arm with the syringe, and rewarding.  Working up, through lots of stages, to having something taped to his arm while he stays still for a while!  Then you'd need to work on increasing the time: you'd probably need to find something to do that he's willing to stay still with?

Might be controversial, but it might be an idea to get him used to having his arm tied down. I'm not sure if this would be allowed?  I'm thinking the rule would be if he wants the restraint removed, he gets it removed.  Him allowing it, and increasing the time allowed would be shaped. So it's never about force, but it's a reminder that he can't just suddenly pull away and get up: there has to be a little ritual before he gets up so he doesn't just pull all the tubes out!  An alternative 'ritual' for before he gets up might be better, but I'm not sure what would work!

Many zoo animals, including great apes and big cats, are trained to offer limbs through holes in barriers for injections etc, so if they can do it...

On the other hand dialysis is rarely done on animals: besides the expense, and problems with some species, it's generally considered just too distressing for animals that don't know what's going on.  Training to accept it might be possible, but is not a quick option as I've described above.

Diet can help somewhat with kidney problems (and if it's acute, I've heard it can sometimes give time for recovery: I think it was David Bellamy survived acute kidney failure before dialysis was available by eating nothing but stewed apples...). But it's not going to cure chronic kidney failure and again it may be a welfare question.

Thanks for all the messages

He lacks mental capacity and is not interested in aiding in the decision making process. So sadly decisions are been made for him.

I think with a lot of work we could get him hooked up but he will need to be hooked up for 3-4 hrs 3-4 times a week. and if he decides to stop at any point he would get up there and then, but half his blood would be out of his body

So it is down to make him comfortable at home or try and if it fails he would meet his end faster and in distress

Is gas and air a possibility? i.e. less than a GA but perhaps acceptable to the patient?

Does he understand that he is choosing between life and death and that there are no other alternatives? He is, at the end of the day, entitled to make this choice as long as he has sufficient mental capacity. Does he have enough mental capacity to understand the question?

I understand where he is coming from as I have always been terrified of needles and anything related to hospitals so he has my sympathy. Recently, I had an accident and wound up in A&E and found that the inevitability of the situation made it much easier. I realised that there was nothing to be done but let them get on with it and it wasn't anything like as bad as I thought it was going to be. I'm now the proud owner of a screwed and plated hip joint and am back on my feet again. The fear of the needle is worse than the needle itself.

Make sure he is lying down and looking away and that he doesn't see the needle coming - even with this approach I still fainted in A&E but at least the needle was in then. It can get easier each time if he can be persuaded that it is worth it.

Yes, I know how he feels.  I have just come back from the hospital where, due to kidney disease, I have to give blood every four weeks.  Today I was almost on the ceiling as they were taking my blood, as it hurts me more than others I think.  They can put on some gel which numbs the skin, but that only helps if they get in first time.  Dialysis will seem like a burden for me too.  But I am sure that the nurses would see it as a challenge to get through rather than a No outright.  They must have some ideas.

I hope you find some good people to help you all through.

Margaret