Best practice in authorisation

So, my name is Martyn Hawkins and I’m a consultant in Intensive Care in Forth Valley in central Scotland, and I was just asked to talk about my experience of end of life discussions and a collaborative approach with a specialist nurse for organ donation.

I've been a consultant for just over 20 years. And I suppose in that time, and particularly doing the training, I’ve had lots of times where I've had to speak to families about end of life care and organ donation. And I suppose I've reached a stage where I certainly have a particular approach that I've grown comfortable with that I could deliver.

Over recent years, I know there’s information that's come from the Organ Donation service that we should perhaps introduce the specialist nurse for organ donation much earlier in this, perhaps as we’re approaching families very early on. I was very uncomfortable about that and had decided that I wouldn't do that. And in fact, I would say for the last few years, I hadn’t changed anything in the way I approached organ donation.

I then was at the organ donation sessions at the State of the Art ICS meeting last December, so that’s December 2019. And I suppose as I reflected on sort of what I'd listened to and saw at that time, I kind of realized that actually, I say I practice evidence-based medicine, and the evidence was that there were better outcomes with the specialist nurses involved earlier. And actually, it was just myself and my own sort of fear of stepping outside my comfort zone that was stopping me from doing it.

So, I felt that I had to address that. I decided that the next time the situation arose, then I would make these initial discussions with the family, with the specialist nurse present.

It wasn't long after that meeting that the situation arose. I'm not going to say too much about the details of the situation, but there was enough about it that this was a particularly... it was going to be a particularly difficult conversation.

It was pretty desperate for the families. They were having to come to terms with a second death within less than two weeks. One of the siblings had, he was an adult, but with some learning difficulties, which meant he found it difficult to manage his emotions, but still the family were very keen that he should be there in amongst all of these discussions.

I had been informed that whilst they had been with their relative through the night, they had, with the nurse at the bedside, they had actually brought up discussions about organ donation. And from what I'd heard, this was something they were probably going to want to... That was the route they would probably want to go along.

Anyway, we went and saw them. I introduced the specialist nurse for organ donation. I guess what I'd learned from the State of the Art session was that, you know, to introduce this person who's got specialist skills for these sort of situations and for people who are... for patients who are in these situations, and that didn't seem uncomfortable.

There are aspects of it where I'd thought it seemed a bit disingenuous, chatting to someone, but not saying exactly who this person is and not talking about organ donation right at the start, but talking about a specialist nurse who had special interest and special skills, and this seemed very... it all seemed fine. It was very comfortable.

The conversation progressed and actually it became clear that this family was very conflicted unless they thought about things, they had reached a situation where, as many do, that they thought that their loved one had had enough. And whilst they had been very comfortable and in fact had thought that she would want to become an organ donor although she wasn't on the register, they just felt... some of them felt they couldn't go ahead and do that.

This was causing a lot of problems within the family, and they reached the stage where they were just talking at one another. So one of the members who was struggling with his emotions, he was getting quite upset and that was just heightening everything really in the difficulties around us.

But eventually they decided that they were going to hand over all responsibility to the patient's mother, and she would decide. And she decided that she did not want to pursue organ donation. Though I would say it was pretty clear that she didn't feel very happy with that decision.

Anyway, I chatted through the usual things that I say, about the comfort that families can sometimes have later down the line, but anyway they were decided, or they appeared decided.

At that time I had said to them that I would hand over to the specialist nurse and did so, and she took over the conversation and as the first part of it brought out her iPad and told the family she was going to show them a short film.

I had received emails in the past about this film that could be shown to families at these times, and again, like perhaps many people had formulated my own opinion as to how well that would go down in a difficult sort of end of life discussion, to suddenly be told you're going to show someone a little cartoon on an iPad.

But actually, the reality of this was it was quite amazing, the effect it had on this family.

Suddenly they had a few minutes where they could just sit, silently, watching something. They didn't have to talk to one another. It just gave them that time to just reflect. Stop talking at one another and listen to this information.

When the film finished, there was, the sibling who had these sort of emotional issues. He had completely changed and he said: "That's what I want for my sister." And all of the others agreed that that's exactly what they would want.

So it totally changed the dynamic amongst this family. It brought them all together. And it brought them to the decision that they probably knew they wanted in the first place.

So that was the first time I'd approached families with the specialist nurse for organ donation right at the start, before knowing their wishes.

Would I do it again? Absolutely.

If only for the selfish reason, by the time the film was over, and they'd reached their decision. Our patient's father, he'd had enough of all of us. And at one point he stood up and said, I think we should pursue organ donation, but I can't talk about this anymore. And I just want to go back and sit with her.

So given that the specialist nurse was there, I was able to just say: "OK, well, I'll take you back" and I was able to leave the room. Because as well as taking him back to the room, there were quite a lot of things that I had to get on with, so if it's just from that... That sounds a bit of a selfish way, but it allowed me to... It got me out of that, and I could get on with other things.

The family saw me afterwards, because they stayed with her for some time afterwards and they saw me. And as they were leaving, they approached and they were all very pleased that that was the decision that they had made. At no point do I think this family was...

These are some of the things I think I thought maybe that would be coercing families into decisions that they didn't really want to make. None of that happened.

It felt a very, very comfortable discussion, and it was clear that the specialist nurse, if the family did not want to progress with organ donation, then that person was going to be able to take them through the things that I probably wouldn't have thought of. Getting handprints and these sort of things that I wouldn't have discussed.

And so it was it was for me, any skepticism that I had about it was totally gone. And as far as I'm concerned, my practice has now changed, and that is the way I would approach these discussions for the future.

I can't think of much else to say about it, really – but yeah, so, I had to realise, everything I thought before, the concerns I had, they were wrong. I was wrong. And this is what I would now do for the future. Thank you.