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.
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.
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.
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.
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.
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.
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.
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.
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.
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.