Donating body to science. How to tell family.

Careful_with_that_Axe

I have a very rare medical problem that may have some genetic traits and I am passionate about leaving my body to the Medical community in the hopes that some more research can be done to identify treatments or whatever.

I have a Living Will in place regarding my wishes when I can no longer communicate. I am unable to donate organs etc in anyway because of the disease and the various treatments I have been on.
I don't want them to just see this direction on there with no prior warning.

If a PM is necessary, I know they won't be able to use me as Med students need an intact body.
My Mum died of a different strain of the disease I have and my sister was absolutely resolute that she didn't want Mum touched in any way after her death.

How do I bring up this subject with her and the other family member, my Father, who suffers from depression and seems to find it difficult to deal with the fact that I am ill?

Errata

It's a difficult dilemma and you have my sympathy. It's worth bearing in mind that although you may wish to donate your body to the NHS and go through all the formal procedures, when you die the NHS may not want it.
Would it distress your family more if you told them what you wished to do and then when you died they were told your donation couldn't be accepted?

Careful_with_that_Axe

I know! That's like the ultimate snub :rotfl:

I've discussed it with Consultant and Dr and they can't give me a definitive answer whether they would be able to use it or not.
I hadn't thought about talking about that part with family, so thanks for that.

The only part of the donation thing I find a little uncomfortable with (on behalf of the family) is that my body wouldn't be at my own funeral and I've always made a point of being there for my family

newcook

I think I would be brutally honest with them and say 'when I die, this is what I want to happen to my body - if they decide not to use the body then that is fine but they get to make the decision not anyone else'.

as for not being at the funeral, of course you will be but in spirit

victory

If you can't face telling them could they read it in a letter/note from you? Maybe that way they would havethe time to digest it, you don't have to see their immediate reaction and later on you can all sit down and discuss their worries/concerns etc

Errata

What about talking it all through with a genetic counsellor? Funeral? What's wrong with a service of remembrance to celebrate your life which you'd attend in spirit? In any event, I believe when the NHS has finished with a donated body it offers it back to the family so a funeral can still take place and you would be there. Well - most of you, anyway

Careful_with_that_Axe

newcook. That is the way I feel. It may hurt my family, but to be brutal, they will get over it and remember me how I was. Put that against contributing to something that could help a myriad of people and there's no contest.
Think you may be right to take the emotion out of it and say, "This is the way it will be" and allow them to get used to it in their own time.

Careful_with_that_Axe

victory I could do a note to Sister, but I don't think that's the way to deal with Dad; a bit too harsh.

NickyBat

I'm for the upfront speech too, it won't be easy but somethings just have to be said. take a deep breath and just say it. Good luck for what it's worth i think you are doing a very worth while thing.

Careful_with_that_Axe

For me it was harder when Sis was so adamant about Mum. I had a need to understand intellectually the process and what had happened at the end. That's very much the way I deal with things. If I can understand it on an intellectual level, it helps me deal with emotionally. There was no way (as next of kin) I could have over-ruled her though as she so obviously felt differently.
At least she is aware that I felt like that and it sortta paves the way to her understanding why I feel the way I do.
The medical community have invested a lot of time, effort and money in me; it's only right to me that I try to equal the scales iyswim.

fluffnutter

I'm not surprised your father finds this difficult. He's lost his wife to this disease and knows he may lose a child too. I think it's important that you tell him though (and your sister). Do it sensitively but explain how important it is to you that your donation might help others in the future. Be kind but firm. It is your choice, and hopefully they'll be able to respect that, despite their own fears and sadness.