La interfaz socio-Estatal y sus actores estatales.

Carers’ voices were heard to a limited extent in the previous section, but here they move more centre stage. The carer’s relationship to the patient’s deteriorating body is clearly different from that of the patient, but some similar themes emerged. While patients tended to talk about managing their altered state, carers were directly confronted with the sight of the failing body. This could have an important bearing on the carer’s sense that help was required, and may shape their place of care preference, though carers might lack knowledge and information about what kind of support might be available.

In interview, carers often expressed their distress about the altered body, in contrast to patients who acknowledged such distress less readily. Carers’ desires to hide their sadness at these changes from the patient are apparent in the following extracts.

Female carer: You’ve only got to look at the man to know he’s dying, and I see him on a daily basis getting thinner and thinner. […] I mean he was asleep yesterday and he was as yellow as that biro, just completely jaundiced skin, like parchment. You look at him and you think it’s just like a corpse laid there. It’s a bit like when your children are asleep as babies, you sort of check them out to see if they’re still breathing. L4, sister, age 58, pancreas, CA1

Female carer: I could tell he was tired, he’d be nodding in the chair, and dropping cigarettes on the floor and stuff, and I’d really try and get him to go to bed, just for an hour for a lie down, and he’d be fighting it constantly, and that used to upset me. Then as soon as I’d managed to get him up to bed, on the rare occasion he would go, I just used to sit here crying, you know, because he always seemed to be fighting it

constantly, and I could tell he needed his rest, but he just wouldn’t go. L2 wife, age 40, thyroid, CA(B)

And then you’re trying to hide that from him, that you actually think he looks so awful. I mean he’d started actually saying -I think it was in June when he went to this Oxford reunion - he was bothered about his clothes not fitting him, and he wanted to wear his old Oxford blazer and, and he’d got it out and wanted me to try it with him and see whether I needed to adjust it for him. And he said, ‘I do look funny these days,’ and I thought it was the first time he’d actually acknowledged that – he’d looked in a mirror. I mean I don’t think he was ever a vain person. I don’t think he spent much time looking in mirrors, but presumably then he had actually looked in a mirror and thought, ‘I just look so different’, body image had changed so much really. B2 daughter, age 33, leukaemia CA (B)

As noted in the previous section, some patients expressed the dread of loss of their mental capacity, but a few carers experienced the consequences of a patient’s actual cognitive

deterioration. This was particularly frightening for carers, since it entailed a loss of the ‘person’ prior to death:

Female Carer: He can’t sequence what he’s to do, and he’s physically very weak and he forgets the routine. He’s lost his concentration and his memory and his confidence. So in the mornings, I found that time very hard. If I’m being honest, I’ve panicked a bit because I thought I don’t know how to deal with this mental thing, I was a bit frightened by it because it wasn’t him. He looked different he sounded different and he behaved differently, and yet he was desperately in need of help and ill and didn’t want anybody else to help him. K1, wife, age 63, colorectal, CA1

Carers in this situation required a lot of support. In some cases support was forthcoming, but in others the need was not well responded to by health professionals. The patient’s wife in the previous extract expressed her appreciation of the Marie Curie nurses at this time, but a

compounding difficulty was that he was wary of people in uniform having had the experience of waking up in the hospice when he had not wanted to go there:

Female carer: I was glad that the Marie Curie nurse came, but she was wearing a uniform and J wouldn’t let her do anything. He was worried that having a nurse meant he was near the end. They seem to feel is that he hasn’t come to terms with dying, really, that whilst he was in charge of his intellect he could push the dying bit to the end of his thoughts; but waking up in the hospice with people very physically and volubly dying around him, and not knowing why he was there and feeling so out of it, has made him think this is what’s going to happen to me, that he’s panicked a bit about his mental capacity and about dying. And I didn’t feel that I had enough skills to cope with that, so

I was glad that the Marie Curie nurse was there, that there was a professional around, but all he would let her do was sit with him while he had his breakfast whilst I got dressed and washed, and nothing else. K1, wife, age 63, colorectal, CA1

Another carer witnessed her husband’s distressed and distressing behaviour but found the ambulance service unhelpful in a crisis situation; this episode led to her husband’s admittance to and death in hospital:

Female carer: [My husband, B] was still roaring, it was like animal noises, and he was still punching out and flaying with his arms, so [the ambulance crew called to the scene at home] decided to bring a chair to put him in. Well, he fought and he fought. They asked me, going down this path - obviously they don’t know that I have a poor balance and don’t walk very well, I’m fine in the house but get me on concrete and I’ve had it - they’re asking me to keep him in the chair. Well he was punching – not punching out at me, but, we got in the ambulance. The ambulance sat outside for 10 minutes and they said to me, ‘Is he diabetic?’ I said, ‘No, he’s been diagnosed with diabetes but only in the last five or six weeks.’ It might, I presume, have been something to do with the medication, I don’t know. But, ‘Well, we’d best do a test.’ So they do that. ‘It’s normal.’ And B. is still thrashing about in this ambulance and they ask me, would I keep him down while they tried to get a line in. Well, you know, I’m thinking, ‘This is not right, because he’s fighting me as well.’ They knocked me over backwards, and I said, ‘There’ll be two of us needing admitting if we don’t move soon.’ And eventually we got to the hospital, that was fine, I mean obviously things weren’t right with B. They gave him something to sedate him but every 10 minutes, then he was back again

fighting, with his arms and what have you. B8, wife, age 60, prostate, CA(B)

This carer went on to describe his last days in hospital and her feelings of distress, her sense of letting her husband down, and of being let down by the hospital. She notes that he may have experienced a more ‘peaceful’ death had he been in the hospice, but acknowledges that his condition prohibited his transfer to the hospice:

Female Carer: They put him in one of the side wards behind the nursing station, they have a couple presumably for people who are-, they can keep an eye on them. And I have got to say for two and a half days he was like that [fighting, as above] and in pain, and that distressed me very, very much. They just did not seem to be able to do

he was coming out every 20, and you couldn’t touch his legs, he would not have you touch his legs. And all the time he couldn’t speak, and he, it was awful because he was throwing himself over the bed and, and putting his arm round my, like this, and looking at me as if to say, ‘please do something.’ And I was so disappointed in them and the nursing staff. I know they can’t work miracles… of course he had to be catheterised and every half-hour we were wrestling to keep him in the bed. And if we went to ask for help – ‘Oh we’ll be there in a minute, we’ll be there in a minute’. It’s not good enough when it’s one of yours. … The hospice, yes, they were brilliant, absolutely wonderful but they decided at [the hospital] that B was too ill to be moved to the hospice. With hindsight, yes, I know he probably was, but I feel if he’d been there he would have been far more peaceful, far more peaceful. And when you get nursing staff coming in, you send for them, ‘Can you help us?’ and they come in and they pat him on the head and they say, ‘Oh come on, you’re not helping yourself.’ I said, ‘I don’t believe you said that.’ So eventually on the Friday evening [the doctor] said he was going to put a line in here so that they could get drugs in that were faster acting. So he settled for about two hours. Then it started again. So I said to [my son], ‘Go and get somebody, he’ll need some more.’ Well [the consultant] hadn’t authorised anybody to use the drugs so that was an hour’s wait before they found a doctor. We are physically fighting because he was a big man was B. And I thought, ‘It’s not right.’ [When I’d asked months before] ‘What is going to happen when we get to the final stages? What am I faced with? Is this going to affect his internal organs, is he going to be vomiting? Just tell me what to expect so that I am prepared for it’. [I’d been told] ‘Oh absolutely not, no, he’ll just get weaker and he’ll just sleep,’ and that’s it. B8, wife, age 60, prostate, CA(B).

In addition, the horror of the death lingers in her mind as a lasting vision of her husband:

Female carer: So when I’m faced with this horrendous two and a half days, that was the most distressing thing for me, and unfortunately even though it’s nearly four months on, if I close my eyes and think of B., that’s where I see him. I can’t get that out of my mind yet. I wish I could. But it seems to have blanked everything else off. All the lovely times that we had. All the laughs and the, and I can’t bring it back, because when I think about it I just see how helpless I was when he probably needed me most and I couldn’t do anything. That was my most distressing time. B8, wife, age 60, prostate, CA(B).

Pain in their patients was a major concern for carers, both before and at the point of death. Carers were often vigilant about overseeing pain medication, and several held and dispensed such medication to the patient. This is illustrated in the following interview exchange:

Female Carer: Do you want a top up, M?

Male patient: No I’m fine, - oh a drop of Morphine? Carer: Because you haven’t had any.

Interviewer: Do you have some more at lunch time?

Patient: I normally, because I’ve been sat here since ten o clock, I get up say every half hour and have a little walk around, but sometimes. […] The doctor told me to take this as a top up during the day.

Carer: His tablets are slow release.

Patient: Basically what this is for is so pain doesn’t come at all. Carer: You don’t have to have pain, M. Get it down your gullet. Interviewer: So does it work?

Carer: I don’t know, I don’t have any pain, but I think it does, M., doesn’t it?

Patient: It does, the only problem I’ve ever had basically that bothered me was me bum being sore,

Carer: But you weren’t on morphine then.

Patient: But I wasn’t on morphine. L4 Age 57, has moved to live with sister and her husband, daughter visits weekly from London, pancreas. PT2

Several carers expressed relief that pain had not surfaced:

Female Carer: I think I’m fairly clear in my mind that although it’s very panicky not to be able to breathe freely, it doesn’t hurt. So I don’t think he had a painful death. L10, wife, age 52, renal, CA(B)

In another case there had been a pain crisis in the hospice. This had finally been resolved, and allowed a more comfortable death for both the patient and the carers. The carer emphasises how the pain must have been very bad, because her brother had never been one to complain and she valorises his determination:

Female carer: Saturday and Sunday he just seemed to be getting worse, but on the Monday when we went - my daughter was there before I got there - she come running out - I said, ‘What’s the matter, S?’ And she said, ‘Oh I’m not going back to see him

with pain’, and the idea of the hospice is pain relief - palliative care. […] But anyway, they were very, very good, the staff were absolutely brilliant, couldn’t fault them, none of them. I went to see him on the Friday night and I didn’t leave till after 9.00pm, and he kept opening his eyes and shutting them, and I thought, ‘Oh, he’s not going to be here this weekend’. […][on Saturday] we went over and it were very peaceful, he’d gone…, but he’d gone pain-free, he wouldn’t have felt the pain. As a patient, T. wouldn’t [want to show distress], and he’d try and do things which was an

impossibility, he couldn’t do them, he couldn’t, but he would have a bash. L15, sister, age 66, bladder, CA(B)

However, in some cases (as in B8 above) dying was accompanied by pain and distressing symptoms which were not well controlled. The following narrative tells of one such situation. It conveys the sense of panic that can be experienced by a carer in a home setting:

Female carer: And so of course that night was a pretty dreadful night because he was needing much more sedation. He was becoming agitated. We didn’t know he also needed something for his lungs, he was beginning to fill up with fluid. The Marie Curie nurse sent for the doctor but of course it was an off duty – on-call doctor. That doctor said to her, ‘I am responsible for 6000 patients, can you come to [the hospital] and pick up some drugs?’ I think it was more than 6 [drugs], forgotten the number now, but basically he said, ‘Look, you know, I’m on call and can you come out for it?’ And she said, ‘No, firstly I’m not leaving my patient, he’s desperately ill. Secondly I’m not coming over for some monitored drugs without you having seen the patient.’ So he did come and out and he said, ‘I’m afraid because of the Shipman new regulations, I’m unable to give him more than the equivalent of two teaspoons of Oromorph’, which I could have given him.

Interviewer: Did you have the drug, did you have the Oromorph to give him? Carer: We had Oromorph, yes.

Interviewer: But you were hoping he was going to give him something else?

Carer: But, the Marie Curie nurse said he needed an injection or he needed basically the line in, you know, with an ongoing infusion of Hyoscine, for the fluid and also for the distress. But he said that’s all he could do, he couldn’t do any more. So he gave him the diamorph injection which he said was only the equivalent of two teaspoons of Oromorph and went away. And he just went on through the night getting more and more distressed. So much so that at about 5 o’clock in the morning my daughter was horrified and said, ‘This is just dreadful, I want you to ring that doctor again, something else has got to be done.’ And [the doctor] came again and he said, ‘I’ll give him some Hyoscine in an injection, I’ll give him another injection of-,’ what he’d given him. But

it wasn’t anything like enough. And of course by which time he was beginning to froth, he was drowning in froth. That was so distressing for him because he couldn’t tell us what was the matter and he couldn’t get rid of it. And [the doctor] apologised profusely and said he was terribly sorry and went away. And then of course at 8 o’clock in the morning I called his own GP. And he came and he got the nurses and they put the line in and they put in the proper infusions of Hyoscine and, and diamorph and everything but by then…. K1, wife, age 63, colorectal, CA(B)

This carer went on to recount how her husband remained somewhat agitated, despite

medication, until near the end, when he seemed finally to be calmed by his son’s voice (on the