What is heart failure?
Heart failure happens when the heart does not pump blood round the body as well as it should. It is not a disease in itself but a condition that results from something that has damaged the working of the heart. It affects people in many ways, depending on what has caused it and how it develops.
Many people we interviewed said the term 'heart failure' was confusing. One man thought the term was too vague, and a woman said that she had felt quite frightened on discovering she had heart failure.
The term 'heart failure' was too general for him to grasp.
When she was first told she had heart failure she knew nothing about it and was frightened.
We asked a GP with a specialist interest in heart failure to help explain what it means, and to clear up some misunderstandings about the condition. He prefers the terms 'heart impairment' or 'heart damage' because they are less negative. He also explains the difference between a heart attack and heart failure which he emphasises are not the same thing.
A doctor explains that he doesn't like using the term 'heart failure'.
I don't like the term at all, and therefore I would say it almost with inverted commas as I am saying it and then go on immediately to point out the sequence of events that's left, that that particular patient with some impairment of their heart. Because heart failure rarely comes out of the blue, its usually due to a process that a patient has already been several years living with - a patient who had a heart attack 5 years before, a patient who had angina then a heart attack then a degree of heart failure, a patient perhaps with valvular heart disease, and they've had an operation perhaps that didn't go as well as it should have, and therefore they're beginning to feel the effects of breathlessness and swelling of their ankles.
And I think its very important at that point to both reassure the patient that this is not a rapidly life threatening condition, but at the same time not overdo the reassurance so that it seems that you're promising them a normal life span which may not be realistic - in some people I think it probably is realistic - but in many it's not.
So we've got very difficult communication problems to deal with and although I've taken an interest in heart failure for many years now I don't feel that I'm particularly good at breaking this kind of news. There are a few highly trained specialist heart failure nurses who are brilliant at it and I'm hoping to roll out their example to other health professionals so that we all manage to do this much better because this is a process that's happened when we didn't use the word 'cancer' deliberately in front of patients because we were so scared of using it, and it's the same with 'heart failure', except that 'failure' does have such an absolute sound about it, I do wish we'd use a word like' impairment' or 'damage' or whatever in its place, but perhaps that's going to come over the next few years.
A doctor explains the difference between heart attack and heart failure.
Heart failure is just a very very general term to denote impairment of the heart the beginning of the heart not functioning properly not pushing enough blood around the body, brain everywhere, causing breathlessness, causing a degree of swelling very often in the peripheries, that's what heart failure is, a heart attack is a sudden severe event - one off, heart failure is a gradually progressive condition.
Many things can cause heart failure, and heart failure itself can lead to other medical problems. Sometimes it is not possible for doctors to be sure why someone has developed heart failure. So no one with heart failure can be described as 'typical' or 'average'. Our GP outlines the range of things that may cause heart failure (see also 'What causes heart failure' and 'Other causes of heart failure'). He feels that people should not blame themselves for having heart failure.
A doctor advises that if people want to avoid heart failure they should stop smoking; also eating 5 portions of fruit and vegetables every day is a good thing.
With heart failure there are limitations to what people can do, and therefore I think its always best to begin exercise in the context of a cardiac rehabilitation set-up if they've got access to it which I think most patients now have.
If we're looking at other modifiable factors, smoking I have to say is the biggest one and I think people who want to give up smoking and who've not had heart failure or any heart problems should do so as soon as possible with the aid probably of a medical professional, it doesn't have to be a doctor, many health visitors and nurses are involved in actually prescribing medication patches, etc which can help people give up smoking. Once you've got heart failure, of course, smoking is doubly bad for you. But I think its true to say that most people who've got as far as that no longer smoke.
If we're talking about the positive messages on food, I would very much emphasise that that is the way to look at it. People have got very hung up on animal fat and, it may be that high intakes of animal fats are bad for the heart. The evidence is actually very difficult to interpret. What we know for sure is that taking your five portions of fresh vegetables or fruit per day definitely helps to prevent heart disease.
Again with alcohol, people get mixed messages, but the message is overwhelmingly that 2 or 3 units per day of alcohol in whatever form, it doesn't have to be red wine, is protective to the heart, its not damaging, and therefore people - even with heart failure - can drink moderately, the only exception there is if the heart failure itself was caused by highly excessive alcoholic intake in first place. The rest as far as life style goes, I think obesity is the thing that we all struggle to avoid in middle life and that brings us back to exercise, and there again fat - intake of any kind is obviously going to tend to increase our weight unless its part of the highly abnormal diet such as the Atkins Diet and we don't know what effect that has on the body's vascular health.
A doctor explains what causes heart failure and says people should not blame themselves.
Again with diet, people blame themselves because they've eaten a lot of fat in their lives - the fact is that cholesterol is largely determined by your genetic makeup and what you eat can play a part, but its not what you avoid eating, its what you positively choose to eat in terms of fresh fruit and vegetables and indeed a regular intake of moderate amounts of alcohol. All these are actually protective to the heart. People blame themselves they read that perhaps some heart failure is caused by alcohol, that's very rare. Much more heart failure is actually prevented by regular sensible drinking.
Exercise' most of us find it very difficult to fit in a regular programme of exercise in our lives and of course it helps to avoid heart disease, it helps to avoid obesity. It also to some extent helps to avoid blood pressure. So, perhaps that is a modifiable cause and people should try to live healthy lifestyles, but another risk factor is blood pressure and again that's largely outside the control of most people. People imagine its because they eat the wrong things or because they're under too much stress - it probably is very little to do with that. So I think there are no modifiable factors that that can lead to heart failure, but I think the attitude that we should take with people who have gone into this condition (which is a very one to live with) is to emphasise the positive, and to work on the things that will actually improve their quality of life in the here and now, and in the future.
Both treatment and outcomes for those with heart failure have improved in recent years because of advances in tests, medication, rehabilitation programmes and surgical procedures (see 'Tests and treatment' section). Until recently it was thought that those with heart failure were at the 'end stage' of heart disease. Now some doctors feel that with better medication and follow-up procedures heart failure can be kept under effective control for years.
A doctor says that treating heart failure has got better and will go on getting better in the...
Well I think that one of the big problems with heart failure is that people can go from a fairly good case scenario to a fairly bad case scenario pretty quickly and I think this is what, one of the reasons that heart failure needs special attention and particularly understanding on the part of the patient and the professionals looking after the patient, that they're to report very early any worsening of their symptoms because people with a weakened heart can quite often go rapidly into worsening situations. If we can intervene early in that then you don't reach the stage where patients get very breathless and distressed, so it's a zig zag pattern and its not a steady deterioration at all,and I'm amazed actually in my own practice to see patients who are doing really well now five years on from when they were told that maybe they only had a few months to live, and this is quite a common situation. On the other hand one has to be honest about it and say that it is often a life shortening illness and condition. Its not really' a disease' as such, it's a range of illness conditions and in most cases it can shorten your life.
People talked about their ways of coping and managing heart failure; this might include not thinking about heart failure much and trying not to let it alter the way they lived. Others described how having heart failure had affected them and changed their quality of life. The GP explains how difficult it is for doctors to measure someone's 'quality of life' and to gauge how much information each patient wants or can cope with.
She hasn't let heart failure affect her life and she carries on as normal.
I think taking the tablets is not a worry to me, because I've got it under control. At first I didn't think I'd have to take them all the time, I thought once I got better I could come off them. But once that was explained to me, well what else can you do? It saved my life, so of course I don't mind taking them.
I think the only thing, I don't like being put in the bracket 'Oh she's got a bad heart, let's let her do, you know, let's treat her differently'. Don't treat me differently, there's nothing wrong with me! I've got a bad heart but I'm living with it. Don't say, 'Oh don't pick that up, don't do this, don't do that'. I can do what ever I want to, a bit slower perhaps, but I can still do it and I will do it. I can still do my work, and it's not affected me and I won't let it affect me. I don't think about it. I just carry on as normal.
A doctor talks about 'quality of life' and how difficult it is to assess objectively.
I think the more that we look into the actual stories of heart failure patients the more we realise that they that it is a condition that dramatically affects their quality of life and not just their physical quality of life, their mental quality of life, their spiritual quality of life, their social life, their self image, their view of the future - all these things can be very difficult to quantify and perhaps we shouldn't try to quantify them, perhaps we should just listen to what people are telling us.
A doctor explains why doctors find it difficult to talk to patients about the end stages of heart...
Its impossible because it is a natural instinct, but I think the patient who wants to become an informed patient is gradually getting the means to do so and is going to have much better means now that DIPEx is available, but I think there are patients who cope best by what one researcher in heart failure called 'disavowal' which means that you know you've got the condition but you decide that you're going to lead your life in the best way you can without thinking about it all the time. And I think that's probably one of the commonest coping mechanisms that people have - its not denial, they know they've got it, they need to be aware that they've got it so that if it deteriorates they can call for help, but they don't let it dominate every aspect of their life all the time, and I think its working with these coping mechanisms that's one of the biggest challenges of helping people with heart failure.
Our Heart Failure website reflects a range of experience from those who have heart failure. It explores how they responded to finding out they had the condition, what they feel about tests and treatment, and, most importantly, it reflects how they are living with heart failure on a daily basis.
Last reviewed April 2016.
Last reviewed April 2016.