'My choice in the Donor Register doesn't actually align with my values'

She explains what is going through her mind and why she chose an intermediate option.

Have you registered a choice in the Donor Register?

“More or less. A while ago, the Donor Act changed: if you don't register a choice yourself, you are registered as ‘no objection’. I had trouble making a choice, so I just did nothing. So I automatically become a donor. My children had already actively registered as donors earlier; we had talked about that a lot. But I found it difficult to do something. Actually, I wanted to forget about it; I preferred not to deal with it. In the end, I checked: my husband decides.”

Is that the best choice for you?

“Actually, no. I think it's selfish and unsocial of myself not to register as a donor. It doesn't align with my values and how I want to be. I can't explain it clearly, but I notice I have trouble with it. Maybe it has to do with my Catholic upbringing. I also had trouble with cremations, with burning. That's less now. It's mainly the fear that something will be taken out of your body before you are completely dead. I know that's not the case, but I still have a fear of that. That is purely emotional.”

What are you afraid of, then?

“That you are taken away too quickly and things are removed while you are not yet completely dead. That's crazy, because in itself I trust the protocol for brain death. But only rationally and medically. Because what exactly is that, brain death? Are you really dead then? I doubt that. Maybe faith is underlying that too. There is a lot we don't know. In my eyes, that is scary, but at the same time, I am ashamed of it. And when those commercials come on again, I try not to listen.”

Do you agree with the Donor Act?

'Yes, I think it's very good, because it ensures that you think about it consciously. I really support that. And the law is intended to get more donors. But then I feel ashamed again, because there aren't enough of them.'

How does your family feel about your decision?

'My children are angry about it. They say: you know that people are dying because they aren't receiving an organ. Usually, I let myself be guided more by substance than by emotion, but this still bothers me. Then, of course, there's the discussion: if I need an organ, I would want to receive one. That's not fair. But it doesn't change my opinion. I recently saw a film about it and talked to friends afterward; it did make me think. But I saw no reason to change it. It is good, though, that my husband decides.'

So, in a way, you're passing the buck?

'Yes, I am aware that I am saddling him with a problem. But I trust that he will act according to my values. That gives me peace of mind. Suppose I fall into a coma – something I find very scary, and my husband knows that – then I know he will make a well-considered decision. I'm not saying a hard no, but he gives the final verdict.'

Do you know what he would choose?

'No, I haven't asked him. I'm fine with that. The whole family knows about my struggle. But I trust that he will act with integrity if it comes to that. That is enough for me.'