Heart failure

Communicating with medical staff

Many of those diagnosed with heart failure may know little about it, so explaining its meaning and implications without causing distress presents a real challenge to medical staff. Most people spoke highly of doctors and nurses and the care they took to explain heart failure. Many had reached an understanding of heart failure over time, though others said they were still rather confused by all the detail.

Many people appreciated being able to talk to their GPs. One woman found all the GPs in her practice easy to talk to and valued being able to get an appointment whenever she wanted. Several who had been in hospital said they had built up a good relationship with nurses on the ward and found them easy to talk to. Those with access to specialist nurses said that being able to ask questions of someone who knew them well was 'brilliant' (see 'Specialist heart failure nurses').

Describes how the local GP practice has helped her cope with heart failure.

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Age at interview: 63

Sex: Female

Age at diagnosis: 61

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If everybody had the same doctors that I've had, and the information that I've had, and the way they've been with me, I think a lot of people wouldn't be as frightened as they are. Because you can't... unless you've got the information there and you know what they're doing and the way they're doing it and how they're doing it which is what I've been given, I think they understand more and they've been very helpful with me.

Oh yes, you see, well faith I think, I've got faith in my doctors. I mean I would go to any one of my doctors and I can talk to them. They're not pushing you in and out, and the receptionists and everything, I mean you don't have to wait 6 days for an appointment you know. And if you go for a prescription 'That will be ready, can you come and pick it up tomorrow or the day after?' They're brilliant, all of them. There's not one of them there that I could say I disliked or, I just think they're brilliant. Don't you go tell my doctor that! [laughs]

Kindness and accessibility were seen as key components of a good relationship with medical staff and improved communication. For example a woman described how a consultant put his arms round her when she cried, and kept explaining heart failure to her and what it would mean. One man said that his consultant shared jokes with him and explained cardiomyopathy in a language he could understand, which helped him deal with his fear of the future.

She describes the care and kindness shown by a consultant.

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Age at interview: 66

Sex: Female

Age at diagnosis: 65

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He did yes, he said, 'I think that you've had this for a very long time, I think that you've been widowed for a long time and you've been overworking for a great many years, and you've been trying to do too many things. Instead of being lazy you've worked yourself out and your heart's said it's had enough, that's what it actually all comes down to,' and that's what he ended up saying.

What did you feel when you heard that?

I didn't feel anything for a few minutes at all. I was absolutely stunned into silence which is unusual for me. [laughs] And then it was such a shock that I cried, and I screamed like a banshee for ages and ages, I upset half the other patients, but he was such a wonderful man, he just sat and hugged me for about an hour, and he carried on explaining, and he re-explained the diagrams and things and he said, 'You've got to listen, and you've got to take this on board because it's going to change your life and I need before I go to know that you've really understood this and then when I go, I'm going to get some people to make you a cup of tea and sit with you and they can talk lots and lots with you. Take your time'. So that's how it came about.

Describes the care and consideration shown by his consultant.

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Age at interview: 49

Sex: Male

Age at diagnosis: 44

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The one I'm under, the specialist, is fantastic. He's that good that the wife and I always say if we won the lottery we wouldn't go abroad because I couldn't take my specialist with me! That's the way we talk, it's..when you go abroad because I wouldn't get the same treatment. He's really, he's a caring doctor as well as, you know, he'll talk to you, it's.. he talks you down to earth like it's not all medical. He'll speak to me on my terms rather than speak to me and talk about cardiomyopathy and things like that, whereas he'll talk to me 'Your heart's not working well'. It's a good system.

He's a caring doctor, he's, it was him that done my angiogram and I thought, 'Oh he'll just get some young doctor to do it', and when I went in he was standing there, joking with the nurses talking about his family. And you know it helps, it reassures you that you're getting something like the angiogram, I'd never had it before, this was the first time, I was terrified, I was crying with the wife before you know, are they going to find something here that they're going to say, 'You've got 6 months to live'. Because before I got the angiogram it was a case of they thought maybe that the tubes were blocked, they thought I'd angina. So going for the angiogram I was terrified what they were going to find, and yet the doctor reassures you, he jokes with you, laughs with you, you know, that helps you to settle down and then as soon as he's finished he explains what he found, that there wasn't any blocked tubes, I've not got angina and he explained it all. As soon as I got back to the hospital ward again he was inside in 20 minutes, he was by the side of the bed, explaining what he'd done, how he'd done it and what he found. I felt a different man after that!

Communication could break down when medical staff were perceived as uncaring. For example one woman who had trained as a nurse, said the body language of some nurses was unfriendly and put her off asking for their help. The way some doctors approached patients could be counter-productive, for instance one man said that he had felt hassled by doctors he didn't know asking him to join research projects when he was still feeling ill. Another man had been told in front of many other people that he was too old for a heart transplant and was so shocked that he couldn't think of any questions to ask and left hospital feeling depressed.

She describes the effect of a nurse's negative body language.

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Age at interview: 59

Sex: Female

Age at diagnosis: 55

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Certainly some of the care was excellent. Certainly before surgery, while I was waiting, that was very good. I actually found the care on the after-surgery was slightly different because I guess, unfortunately for the nurses and perhaps unfortunately for me, I'd actually been made very aware in my work of person-centred caring with a group of people I work with. We've been trying to sort of change the way we care in actually working on a very, very individual basis with people and trying to sort of see each person as an individual and recognising what was really important for them.

I can't criticise the actual high-tech, saving-my-life-care because that's what happened. I think it was my sort of spiritual well-being that probably wasn't catered for very well. And I don't necessarily mean that in a godly spiritual way, although that is also quite important to me but it was also about things that actually mattered to me. And it was just about the way [pause] people looking after me spoke across the ward, like I heard a nurse shout across the ward one day to somebody, 'Have you had your bowels open today?' And I thought that had actually stopped and my husband was there and he said, 'Oh, do they still do that these days?' And I said 'well obviously in some areas, yes!'

And certainly I was aware of people who didn't want to be at work, their body language would sort of say, 'well I'm here for the night but perhaps I don't want to be, so don't ask me for a commode.' And I think the impact that has on you when you're actually feeling very ill, out of control, hopeless is just very pertinent you know. It wasn't therapeutic; it didn't help my healing at all. It just made me feel desolate at times and I can almost sort of, well I definitely know that at night I would be looking to see who was coming on duty. You know it just made a difference. There was one night nurse who was just so therapeutic, so busy but so therapeutic that when I saw her, you know my heart just lifted really and I would think great. And at other times, you know I could think, 'Oh no, I must try not to ask tonight.'

Describes feeling pressurised to join research projects.

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Age at interview: 46

Sex: Male

Age at diagnosis: 45

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I think they need to, and then you've got all these people who, like in the hospital, who are all different segments of other organisations wanting you to sign up to do this with them, to do that with them and you know, because 'this is an unusual case' sort of thing. They should stop all of that, you know what I mean. The person's got enough to worry about trying to get out of the situation they're in, sorry get out of the situation they're in, right and family, immediate family, girlfriend, whatever, they've got a lot to consider there, more than having these other people come in, 'Oh can you sign this form for me?'

This was like thee days after I'd first got admitted, all these doctors coming up and asking me to sign and I says, 'No, no, no,' I says, 'Let me have a word with that person there, you know what I mean, because that person's looking after me.' You know what I mean? So I think that needs to be broken. I know they have to do their research but I think there should be a little bit more tactful way of doing it, you know.

Describes how he heard the results of an angiogram.

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Age at interview: 66

Sex: Male

Age at diagnosis: 64

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There was ward, there's a ward you go into at the hospital. I think there were 10 or 11 of us in the morning and there was another batch coming in the afternoon for the same thing, you see. You get yourself all ready, you know. And you're laying there in the bed and they come and wheel you in one-by-one it takes half an hour this angiogram does, so really, it's like a 5-hour job and then you've got to come back and lay there for two hours before you can leave, before you can dress because there's a hole in your groin you see, and you have to wait for that to heal up, well for the blood to congeal.

But the doctor comes round after all that with all the notes for each patient because he's examined them and decided what can be done for each patient. The chap in the next bed to me, he says [to him] 'Well you're going to need a triple by-pass'. Now I could hear this because this chap's in the next bed, you see. And there's one in that bed and there's one over there. And he says, then he goes to another one and he says, 'Look we can put a couple of stents in your heart, just widen the arteries a bit, that should be OK.' (Funnily enough my daughter's husband's father was in there at the same time as me for a heart attack. But he was waiting to have a triple by-pass. Yes, but he could have it, you see, I've seen him since.) But, and then they went to the next bed and said to the chap 'Yes, we'll put the stents into you and widen your arteries and you should be okay'.

Then he comes to me and he said 'Well, you've got a disease in the artery at the back of your heart'. He said, 'And the heart attack, that caused the heart attack but what happens is it destroys your muscle in your heart. So there's really nothing we can '' I didn't really understand this, you see. He said, 'There's nothing we can do for it, only a transplant', he said, 'But we don't consider transplants for anyone over 60'. And that's all he said to me! He just said, 'Is there any questions?' but I couldn't think of a thing to say, you know, who could after being told that? So I was really on a down after that. I think I suffered from depression for quite a few days after that until I saw the nurse and the other doctor, and they put me right, you know what I mean? If he'd have come and said that, if he'd said that instead of saying there's nothing we can do for you, if he'd said, 'The only thing is a transplant but because of your age we don't do transplants but we can control it by tablets'..and if he'd said that, fair enough you know, you think oh they can do something about it you know you're okay. But to say that they can do nothing and then leave you hanging on a limb.

Lack of continuity in follow-up appointments and time constraints could also jeopardise communication. One man said that seeing different doctors undermined his sense of security because they didn't know him or his case. Someone else said that outpatient clinics were 'the give-away job' and that he wondered if doctors had enough time to read notes before consultations. Those who had seen different specialists in the course of treatment said that they were satisfied that the communication between doctors had worked well. One man said he relied on his GPs to draw all the different threads of his various illnesses together.

Talks about how seeing different doctors at hospital appointments is unhelpful.

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Age at interview: 35

Sex: Male

Age at diagnosis: 35

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I think so especially when you went to the specialists in the hospital they should know the actual history of each patient. I mean every time I go to hospital I see a different doctor. I was never seen by a similar doctor twice. Every time I go there's a new doctor and all that he can catch up with is the last page on the notes saying, 'I reviewed this patient's case two months ago, three months ago and he had this and this and this' and he builds on that. He doesn't have the history of this patient or his particular case.

That's definitely something that's quite important to be with one doctor, or at least one team, that they share together and they you know sit down together and share the cases together. At least you know they, when you go for a follow-up, they know who you are and you know what did you have, and all that. And in 1995 someone was totally new [laughs] was reviewing my notes and just read the previous pages and said, "I can't believe you're still around," [laughs] and you know.

Gives a negative view of outpatient clinics.

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Age at interview: 47

Sex: Male

Age at diagnosis: 41

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It would help improve consistency and also friendship and greater knowledge of patients if you were to see the same doctor each outpatients appointment. I've put this to the doctors, and they said that wouldn't be possible because you know, being a training hospital you would get that for X amount of time and then they would be off somewhere else or whatever.

And it's like, it seems to me the outpatients job is the job of somebody, 'Well you can do outpatients today.' It's like the give-away job, and so every time I go up there I see my consultant in the end office and I'm just hoping I'm going to get his ticket and I don't. And so in the end I just sort of raise my eyes in the air, and I look at the person I'm with and I just get as awkward as hell. And they don't like it, but then as I said to somebody, they're not the ones who go home afterwards to what I have to go home to.

Yes, it's one of my arguments in the past because often when you go to an outpatients clinic what happens there is you say what's wrong, and each doctor has got each their own idea of what should be. So they give you an idea of what, their idea of what you should be taking, and they'll change it so you go out and you try it. I learned eventually that it didn't make a lot of difference, I went back to what it was before, better the devil you know kind of attitude.

Those who had lived with heart failure for a long time felt that communication had improved considerably. One said that things would be even better if patients were encouraged to ask more questions but another felt that people didn't always know what to ask. Several people said they had felt involved in certain decisions made about their care.

Suggests that doctors need to make time for patients to ask questions.

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Age at interview: 81

Sex: Male

Age at diagnosis: 79

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Yes, I think that today, going back on when I was in hospital in '47, that over the years there has been a closer, far closer co-operation between doctor and patient, and nurse and patient, than ever there was, but it's got to be even better. And I feel that if the doctors, I know again they're under pressure, they've got a big volume of work to do and they can't spend too much time with a particular person, but if they could make that small amount of time they have count, by answering a question, allowing a question to be asked. Because in some cases, some patients who are rather timid will not ask. Now I would because that's part of my makeup but those that are timid can be reassured on certain aspects or if they've got a weak heart, 'what do you mean a weak heart?' 'How's it affecting me personally?' and 'Should I do this?' 'Should I carry on living like this?'

We know that you have this aftercare and we know that you get this little booklets and things like that but it's not the same as the doctor or the consultant at the point of being sent home, telling you the main operative things or answering a question. 'Are there any questions you'd like to ask me?', providing it's not long, they may have to readjust the whole thinking but I think that won't take place until we have more doctors, more nurses, more places, and people have got more time to do what they would like to do.

Last reviewed April 2016.
Last updated April 2016.