Since you haven't responded to the above posts, I am not sure if you are still checking these boards. However, when I see posts about spouses, it really gets my blood boiling and I feel compelled to chime in. Unlike most of the participants in this board, I am not a donor, but a spouse, and my husband for the past 15 years has been facing and preparing for a kidney donation to one of his siblings, all of whom have an inherited kidney disease (which he somehow escaped). We are now going through the third iteration of this process and this time it is almost surely going forward this summer. Not once has anyone at any of the various hospitals asked for my opinion or even to meet me, and certainly not for my consent. I like to call myself the "disinterested standby spouse" since I have no official place in the process, the recipient is not me or anyone in my family, and my role is to just stand idly by until I am called upon to play an important role in the recovery process. It is very difficult not to feel resentful.
I suppose I could have consulted a marital lawyer and seen what my options were since his foremost legal obligation is to support our children. I don't know what would have come of it in terms of stopping the donation but it almost would have certainly led to divorce, and not on amicable terms.
One of his siblings is on a paired exchange list with hundreds of people that has been run many times but his sibling is never a match due to a ridiculously high pra/hln count and she has been on dialysis for five years now. So, since my husband is preparing to donate this summer to a different sibling, I offered to take his place on the paired list with the dialysis sibling. It wouldn't matter that I didn't match with his sibling in a paired exchange chain. And I offered sincerely, because frankly from the perspective of a donor I am not that worried about it, even after years of reading all the scanty research I could find on kidney donor outcomes. But my husband was no no no absolutely not won't even discuss it. Isn't that odd? It highlighted to me just how different we feel when doing some risky versus watching someone we love do something risky. No doubt there is a neurological explanation for this and different parts of the brain become activated, etc. Nevertheless, there is still a certain amount of hypocrisy. I feel strongly that if spouses don't get a legal vote and an official seat at the table, they should at least be entitled to a lot more empathy and consideration than they currently receive.