And that horrible expression, the permanently vegetative state is I’m pleased it’s just A coma is kind of a nice word and you envisage something – a bubble around someone. But a permanent vegetative state reminds me of something like a cauliflower – that you’ve become something moldy, a moldy vegetable for some reason.

So you think it fits?

Yes, it does.

Because some people hate that, they don’t want their loved ones described as vegetables.

No, I don’t like it. (It’s thundering now!) I didn’t like it. No, I’m not saying- It fits. But once you accept that that’s what it is, then you know how horrific it is. But you don’t want the whole world to think of your – the person they knew as vibrant and energetic as a vegetable.

Coma is really the word that’s used to refer to someone being unresponsive, unconscious a plain English term just meaning they’re not responding at all. We assume that they’re unaware of anything that’s happened. They will not talk. They will not move. They will not do anything at all. They may need ventilation support or they may not. But they’re unresponsive. And they will remain in that state, with their eyes closed, throughout. So one of the things that defines coma is that your eyes are closed. At some point, usually within a week, two weeks, if they remain in that state, they will start to open their eyes. They will start to be slightly more reactive and responsive. And at some point they will move into a state where they are termed often vegetative. All that means, really, is that having lost the sleep-wake cycle- For the first week, two weeks, they don’t wake up and go to sleep with their eyes opening and closing, they just stay the same, they start to have a time when they appear more awake and a time when they appear more asleep. Their eyes will be open. Their eyes might be moving around. They might be twitching or moving a little bit. And in that case you might refer to that or people do refer to that as the vegetative state. And it really just means that the functions of the body of pulse, blood pressure, breathing, digesting, which are known as vegetative functions, are working and are going along in the normal way. But they are still not with us, they’re still not aware, they’re still not responding in a meaningful way to what’s happening around them. So it’s slightly artificial because from the point of view of the outside person they’re still unaware, they’re still essentially not responding. But in a descriptive sense we call them vegetative.

How can you be sure that a patient is vegetative and has no awareness of themselves or the outside world?

Right, well in terms of being sure that someone is unaware of themselves, in the end that’s a human clinical judgment. So there is no electrical test or scanning test that will tell you definitively that this person is aware or not aware. So the way that I do it and most people do it is to look at somebody’s behavior in other words the way they move, the way their face moves, their hands move, their arms move, whatever it might be, and to say, Does that behavior require the person to be aware, or is that entirely a reflex?. So has that person extracted some meaning from what is happening? So if the bell goes, if a telephone bell goes and somebody reaches out as if to pick up a telephone and as if to put it to their ear, they’ve obviously understood that it’s a bell, which means telephone, and they obviously know that a telephone is something that you pick up with your hand. If the bell goes and they just jump, they’ve heard the noise, but they don’t take any meaning from it. They’d do the same if I clapped my hands, rang a bell, opened the window, probably, with a loud bang. So they’ve got to get some meaning out of it. And in terms of their movements, if they’re doing something that implies they have an abstract goal. So if I pinch somebody on their hand to see how they respond to pain, and they withdraw their hand, that’s a reflex. If I pinch anybody, if I pinch you, you would withdraw your hand among other things. If I pinch someone who’s conscious they will also try to take my hand away, hit me, they’ll do a whole lot of other things. Which imply that they’ve worked out that somebody is doing something and they want to stop it. So if somebody was apparently in a coma, or apparently in the vegetative state, and I pinched their hand on the left, and the right hand comes across, catches hold of my hand, and pulls it away, clearly that means they’re aware. They were aware that somebody, me, was causing them pain and they thought how can they remove it. So in the end, saying somebody is vegetative means that you have determined that nothing that they do requires them to have formulated a goal, formulated an idea, or understood the meaning of what is happening around them. And that does come down to commonsense, in a way. You have to decide that. Because people in the vegetative state will respond to noise – by startle or jump, will respond to pain by moving away, often will have some spontaneous movement, their eyes will move all over the place, they might yawn, sometimes they might stretch or they might move their arms. Rarely do they do a lot of movement I have seen them, but that’s rare. But they’re not immobile or unresponsive. It’s the nature of the response that determines reflex against awareness.

The question of whether someone in the vegetative state can feel pain is interesting and difficult to answer. I personally believe that they are not aware of pain. If you could ask them I don’t think that they would say that they feel pain. And of course we talk about it we say they feel pain and withdraw. What I should be saying is, theres a painful stimulus, which reaches the central nervous system probably the spinal cord up a nerve that normally carries pain, that causes a reflex movement in the spinal cord to move the hand away. I’m implying, when I say they’re not aware, that it is not getting up to the brain, to a part of the brain that says I (whoever I am) am feeling pain. So they don’t feel it. But they respond to it.

And I think it’s the appearance as well, it’s the appearance of suffering. I call it the appearance of suffering and I won’t call it suffering, because it’s not, it’s the appearance of suffering. From eyes watching and looking at another body, that body is suffering. But hes not in there to suffer, I tell you that now. Hes not feeling any of it. So it might look like, every time he goes through these.

When he goes through these phases of illness, hes not feeling it because hes not in there. Hes not, it’s the appearance.

The body is going through something, but he is not in that body, he does not feel it.

And we have proof of that, do you know, it’s things like there are certain clinical signs when someone is in pain. [Partner’s name] does not show them.

And it’s not just that hes on loads of pain med anyway. So even if people did believe hes in there again it’s the appearance of suffering, because hes on so much pain medicine. It’s lovely [laughs], I feel really good about it, hes not feeling it, hes not feeling it. I’m absolutely certain of it, absolutely certain of it. He does not feel any of it.

So he wasn’t on long-term pain relief. He was on, as and when paracetamol [laughs].

Anyway, but do you know that he was on so this was the first time weve had actual pain relief and it does make a difference. And I can see it, because he just relaxes.

That dystonic arm thing he come down. The breathing, it regulates. And now the thing is, you can do the SATS level, and it still may be done at ninety, or eighty-nine or whatever. It’s not gained anymore. Sometimes it was even lower, weve had it down at eighty. But hes not suffering, right? I’ve seen him suffer [deep breath]. The sweat, the panic, you know, we had him sat up and he was just not coping. Do you know, his face was panicked, he couldn’t sleep, he wasn’t resting. He was puffing, he was puffing, he was gurgling. The heart rate was shot up, do you know, it was uncomfortable.

Now that he can clearly not be getting much oxygen in, hes not getting much oxygen and yet hes so much more peaceful. It’s very obvious that he is resting, you know, and hes just hes okay with that. Hes not he may not be getting it, but he doesn’t seem to be feeling that.

I can’t explain what hes feeling, I just know when I see him, I know the difference. I know when hes uncomfortable because everything changes. Hes it’s like hes fighting for something. Fighting for oxygen, fighting to get stuff in. His eyes are always searching for something and he just doesn’t seem to be hes fine. I mean that blood pressure, that heart rate is normal.

Olivia: It wasn’t her anymore.

David: No.

Olivia: It was her body. It wasn’t her. But I suppose bizarrely, maybe as a daughter-law, out of respect for my mother-law, you know, I would I treated her as I would have done if she would have been—

David: Well, yeah, yeah.

Olivia: her normal self.

David: But yeah, but I suppose, you know, obviously no communication, disfigurement body wise, rolling of the eyes, things like that just you know, it was just it was a shell basically with a few functions going on inside it and everything else being automated. And whenever like I say, whenever you were with her the machines were in [makes machine noises] you know, everything going on and bleeping and so on, so she you know, she was there, in appearance you could still see her, and especially when she was asleep you could still see her. But when she woke or whatever—

Olivia: She had her eyes open.

David: Yeah, when she had her eyes open. She you know, she wasn’t there. She wasn’t there. You’re like I say, in the early days you were looking I looked so hard, I wanted to find I wanted to find I think in my head, I wanted to find something, and I would make you know, not make anything up but you would look deep in her eyes. You know, no one else in the room, just holding her hand, you know, is there? Is there? And never, ever saw even a glimpse. So you sort of, you know, came to the conclusion that, you know, like I say, it there was nothing no coming back basically from what, what had happened.

Mark: He has a smile on his face at times, which seems fairly random. He cries sometimes, which is quite distressing. One of your daughters had a bad time with that once, didn’t they? And that seems to be spontaneous and then – . Oh, it’s one of like a lot of things with him, he I can be I can persuade myself one way or the other about some of these things and so can the medical people. And when it happened in hospital they used to say, It’s just his eyes watering and you don’t want to take any notice of that really. But when you’re looking at somebody and they’re looking straight in your eyes and they start crying, you can’t not take any notice of that, I don’t care what anybody says really. And if that coincides with something that you’re talking about, that you suddenly think, well, actually he might find that a bit distressing, it does make you think a bit more.