CONTENT WARNING: MY FAMILY SHOULD SKIP THIS ONE.

This post is traumatic (at least for me) and is likely to be triggering for some people. I think it may also be important, which is why I’m writing it. It is highly personal, and for once, I’m not up for debate about how it made me feel, although I’m hoping it might trigger wider discussion with others. That said, it is only the experience of 1 girl in 1 room.

Please note that I am a passionate advocate for organ donation, which is why I’ve never talked about this as I’ve always felt worried it might put off others. Now, with people objecting to ‘opt out’ change to the donation rules I feel the time may be right for me to talk about it, as I’m hoping it will change for others the hardest experience I’ve ever gone through.

Here’s the background

My sister died in 2010. At that point, despite the existence of organ donor databases, if you wanted to donate the organs of a loved one, you had to go through a process of informed consent and opt into the process.

Defining consent

Informed consent – the person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what will happen if treatment does not go ahead.

https://www.nhs.uk/conditions/consent-to-treatment

In 2020 this situation changed and the English system changed to what is known as presumed consent or the opt-out system, and means that unless the deceased has expressed a wish in life not to be an organ donor then consent will be assumed.

This means that there are now three ways to approach organ donation in England, vs the one that I experienced back in 2010.

I was at a workshop this week, and as part of the ethics discussion, the issue of switching to an opt-out system of organ donation came up. It was a really interesting discussion in order to support seeing a complex issue from multiple viewpoints. Is opt out coercive? Will it actually address some of the issues around numbers of donors?

I found myself talking about something that, to be honest, I never talk about. Something that I think has been locked away in my head (and for me, a completely different reason), beyond the numbers and ethics, why I think opt out is a good thing. Why? Despite passionately believing that organ donation is the right, logical, and good thing to do, for someone to ever go through what I had to go through to donate my sisters organs was not something I’d wish on anyone. When I lie awake at night and cry, it is not over the moment that I found out she was not going to make it. It is over the 24 period that I lived through trying to do the right thing. Informed consent is the gold standard, but it can also be highly traumatic to those who have to go through it. This didn’t even come up as part of the discussion, but I wanted to share my experience of informed consent to aid understanding of why I think that moving to presumed consent might also be a good thing.

Knowing is different to doing

I’ve written before about how the circumstances came about of losing my sister, but I sort of glossed over some of the 48 hours between her effectively dying and being declared brain dead. This part was obviously traumatic but not perhaps because of the reasons people think.

From when we were kids my sister and I always talked about organ donation and how we would always participate. Maybe an odd thing, but we came from a pretty science based household where all kinds of conversations were common. I remember going to get our first Boots cards together and being very impressed that on the application form, you could also tick to confirm you’d like to be an organ donor. I can see the form in my head even now. We both ticked very thing but eyes. I don’t know why we didn’t tick eyes, but I clearly remember we didn’t.

So, when we were given the news that my sister was brain dead and that there were going to start the 24-hour confirmation process, I knew what the next conversation would be. I’m fact because I knew her wishes. I actually instigated it. It was the right thing to do.

Never, as it transpired, has doing the right thing been easy.

Experiencing informed consent

They said they’d get the transplant nurse come to speak to us, they were so pleased they hadn’t had to broach the subject, you could see the relief. I had a friend who’d just started working as a transplant nurse and they had told me how hard it was and so I wanted to make the process as straight forward as possible. I wish I’d asked them.more questions and known more, but I hadn’t, and I didn’t.

Here is the assumption I had made. My sister had been on the organ donor registry, she had ticked her boxes, we knew and supported her decision. We would therefore go into a room where we would sign a paper to that effect and walk out in order to wait for her official demise. Spoiler alert – this I not what happened.

What happened instead is you walk into a room, with a very nice and kind nurse, with a clipboard loaded with papers. They warn you that this will take some time and will be personal. Bear in my my brother in law is understandably distraught and therefore most of this process is being covered by my mum and I, to be honest I can’t even remember, but I don’t think he was in the room. Then it begins.

It starts with the scene setting, what was my sisters sex life like, how frequently and with whom? As a scientist I know this information is key and it aids risk assessment, as a person I’m talking about my dying sisters dating history and I have to say frankly it’s a bit jarring. I also only have the answers because we spoke every day and we were super close.

For the next (what feels like several hours) you proceed to verbally dissect your loved one organ by organ, piece by piece. For each piece you go through numerous options. Are you happy to donate her pancreas, if so who are you happy to donate it to, the cells? To an academic lab? To a privately run company? How do you want it disposed of once they are finished with it? If they take parts of her gut but then can’t use them (in case she is too fat, but they don’t have that info yet as they haven’t got my sisters info) is it OK if they throw them away? Every time you believe there can’t be more there is.

I know where this comes from, from multiple organ scandals, and I know the importance of informed consent. In the room it feels like none of that matters, in the room it feels like some kind of psychological torture that will never end. I’m lucky, I’m in doctor mode and all the horror is not happening at the front of my brain, doctor brain is evaluating and deciding and ignoring the screaming from the girl who is experiencing the pain. I have no idea how my mother survived it, she just calmly went through and discussed bits with me as if we were talking about a shopping list. To this day I don’t know how we survived. At one point I turned around to the nurse and asked, surely we can just blanket consent, and she confirmed that she had to read the text for each bit and that we had to actively make decision and understand.

When I have nightmares about this process I see my sister in the dress we picked for lying her out in and as each organ is called out I get a dolly zoom onto the anatomically correct part. My brain does love to torment me.

Once we reached the end of the list, I took a deep breath, relieved it was over, but it wasn’t over. As a thank you for agreeing to donate her organs you then get another form to go through. She gets to be laid out in the Chapel of Rest post surgery. Please could we go and find something (now) so that she can be laid out in, they need it to make everything ready. Also, would we like some of her hair to keep? If so what colour ribbon would we like? This was the bit that blew my mind. I had coped with the organ by organ dissection, but what fucking ribbon do I want for me dead sisters hair, how the hell do I know. I know all of things that mean I should know, I know her favourite colour is purple, but it feels like one decision too far. You get to keep one piece of her, now make decisions for the one thing in the world you will have left of someone who has been part of your life every day since you were born. Something simultaneously so simple and yet crushing. Colour picked, now off you go, find an outfit that is clean, she would have liked and still fits the body of someone who was 5 months pregnant but had yet to buy maternity gear as she was worried about what would happen to her child. Oh, and I forget the second best bit. Whilst you’re there, you can pick a personal item or toy for her to have in the theatre whilst they vivisect her. It’s not like it’s going to be an infection risk to her.

So off we go, we pick a dress, we pick her huge black stuffed cuddly dog. Then you wait for the 24 hours to be up do she will be called.

At this point my willpower failed me. I couldn’t be there when she went into theatre. I couldn’t wait for them to come out and tell us it was over. I’ve been in theatres and this is where we come to the part that I still can’t really deal with. After all these years I still have days when I feel it. I feel like I killed my sister. I feel I gave someone permission to open her up and whilst her heart was still beating remove bits of her one at a time until she died. I can see it in my head, with that cuddly toy on the end of the bed. I can see it all so clearly. It’s like a horror movie and I know every single piece because I went through them all like it was a shopping list. It doesn’t matter that there was no way back, it doesn’t matter that it was what she wanted, it doesn’t matter how many lives were saved, it matters that I went through a list of her body like she was a joint of meat and said which parts could be sold to who.

Time heals most wounds

I didn’t even find out who those organs went to. All of that info went to her husband as next of kin, and he didn’t bother to share it, and I never had the strength of will to ask. Just recently a wonderful colleague gave me the number of someone who might be able to tell me, but I don’t know if I’m ready to re-open this particularly deep wound, maybe after writing this post I will be able to get there.

I’m horribly aware that this post might put others off signing off on donation but I’m hoping that by contextualising at the start you’ll know that that is not is what I want to achieve. It is however the reason I don’t talk about it. I believe so much that it is what we should do. At the same point I know that I don’t think I could ever go through that experience again. Which brings me to presumed consent. I am desperately hoping, although I have no idea, that by having some assumptions in relation to consent, that no one else will have to go through the same process I did. I know why it’s there, I also know how complex it is sitting on the other side. Giving people options is key, there should be choice about what goes where, but I believe there should also be the option to have a blanket ‘I donate everything but this and it can go everywhere but here”. Otherwise, you harm people trying to do the right thing in ways I can’t even fully explain. This isn’t a neutral opinion, though, and I get that. It is one driven by pain and horror, so perhaps I am not the best person to have an opinion on this after all. Either way, the time has probably come to talk about it. Nothing in this area is simple and so maybe by talking about it more, it will enable better conversations so that if you ever end up in that room, you won’t be as blind sided as I was.

I have no regrets, I am OK with the choices we made. Deep down, I know I respected the wishes of someone I loved. I just can’t deny that every now and again, the guilt still knocks me for six, usually when I least expect it. That isn’t a reason to not do the right thing. It’s just a cost worth acknowledging.

All opinions in this blog are my own.