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You can use our My Learning form to reflect on how this page has helped with your continuing professional development. If you're a patient, or a family member or friend, you can find more information on heart failure from the British Heart Foundation . Heart failure means the heart is not pumping blood around the body as well as it should. People with heart failure may have symptoms such as fatigue, breathlessness and oedema (swelling). Here, we'll talk about knowing when a patient with heart failure is near the end of life, and how to support them. This information is about supporting adults with advanced heart failure. On this page: Heart failureHeart failure is a set of signs and symptoms that suggest the heart is not pumping enough blood around the body. It is sometimes called congestive heart failure – congestive means that fluid has built up around the body. Causes of heart failureThere may be more than one cause. Common causes include:
Other causes include:
Acute or chronic heart failureHeart failure can be acute or chronic. Acute heart failure happens when either:
Chronic heart failure is when someone's heart failure develops gradually over time and is a long-term condition. Symptoms of heart failureCommon symptoms of heart failure include:
Patients with heart failure may find it difficult to move around, do daily activities, work and do hobbies. This can affect how they feel, and lead to worries about money or losing their independence. If someone has symptoms of heart failure and they have not been diagnosed with heart failure, it's important that they speak to their GP or another healthcare professional. Read more about symptoms, causes and diagnosis of heart failure from the British Heart Foundation. Stages or classes of heart failureYour patient may have been told what stage or class their heart failure is at – this explains how severe it is. NYHA (New York Heart Association) classification divides heart failure into four classes:
Patients with advanced heart failure will usually fit into class 3 and 4, despite the best specialist treatment. Read more about the definition of heart failure from NICE . Managing heart failureTreatment for heart failure includes:
Patients may have these treatments together with palliative care. Palliative care provides physical, emotional, spiritual and practical support to improve patients' quality of life. Members of the patient's care team may include:
Signs that a patient with heart failure is near the end of lifeIf a patient has end-stage heart failure it means they are at high risk of dying in the next 6 to 12 months. These are the common symptoms of end-stage heart failure:
We have more information about some of these symptoms below. Symptoms of advanced heart failure can come and go, making it hard to know how the condition will affect the patient and how long they might live for. They may have several emergency admissions to hospital in their last year of life. Many patients with heart failure also have other health problems, such as kidney failure, diabetes and chronic pulmonary disease (lung conditions that cause breathing difficulties). These can affect which medicines they can have, which can lead to more symptoms. Emotional symptoms towards the end of lifePeople with heart failure may experience different emotions and feelings. They may feel:
People may not think heart failure is as serious as other illnesses, such as cancer. Patients with heart failure can look well even when they feel very ill. If a patient has anxiety or depression, their healthcare team will assess how it affects them and whether they need treatment, such as cognitive behavioural therapy (CBT) or medication. You can support the patient by providing emotional care and helping them with activities to make them feel better, such as reading, going outside and listening to music or audio books. Find out more about providing emotional care. FatigueFatigue is extreme tiredness. It's not caused by doing lots of activity, and it's not always made better by resting. Fatigue is one of the most common symptoms of heart failure and patients can find it difficult to deal with. Treating heart failure may improve fatigue. Read more about fatigue. Order a free booklet for your patient about managing fatigue. BreathlessnessBreathlessness is a common and distressing symptom of heart failure. It can limit how much patients are able to do. It's normally caused by a build-up of fluid that backs up into the lungs, but there may be another underlying cause, such as a chest infection, anaemia (not having enough red blood cells or haemoglobin) or anxiety. Read more about breathlessness. Order a free booklet for your patient about managing breathlessness. Peripheral oedemaPeripheral oedema is a build-up of fluid, usually in the lower legs and ankles, which causes the affected tissue to become swollen. This happens because the heart is not pumping efficiently. Read more about fluid build-up. Share online information with your patient on oedema (fluid build-up). PainSome patients have pain towards the end of their life. The healthcare team will assess their pain. Non-opioid medicines, like paracetamol, help to relive mild pain. Opioids, like morphine, can treat moderate to severe pain. If a patient's pain is not under control, talk to their palliative care team. Read more about pain. Order a free booklet for your patient about managing pain. Nausea and vomitingIf a patient has nausea and vomiting, it's important to find out the cause and treat it. Possible causes include medication, anxiety, constipation, or other gut and digestive issues. Find out how to treat nausea and vomiting. Share online information with your patient about nausea and vomiting. Cardiac cachexia or anorexiaCardiac cachexia happens when a patient loses fat and muscle tissue. Patients with cachexia may lose their appetite (anorexia) and significant amounts of weight. Speak to a dietitian about managing cachexia and anorexia. They may suggest eating small, frequent meals or taking high calorie, high protein food and supplement drinks. Patients may need to avoid some fruit juices and food supplements, which can affect their medication. Read more about hydration and nutrition. Cognitive impairmentCognitive impairment is common in people with heart failure. It can include problems with memory, speech, language and delirium (sudden confusion). When a patient has low levels of oxygen, they can become confused and distressed. Read more about delirium. Share online information with your patient about delirium. Supporting patients with heart failureThere are lots of things you can do to support patients with heart failure at the end of life. Find out if there's a specialist heart failure nurse in your area. They can visit patients at home, in hospital, or in a hospice. Talk to them about their symptomsPeople with heart failure may feel worried about their symptoms, treatment or risk of dying suddenly. Reassure them by talking openly and honestly about their concerns. Speak to their cardiac or palliative care team if you need support. If the patient has a plan for managing symptoms or emergencies, they may feel less anxious. Advance care planningThe progression of heart failure can be unpredictable. Patients with heart failure are at risk of dying suddenly so it's important to have conversations early about their wishes for their care. An experienced health professional who knows the patient well should talk to them and the people important to them about their care towards the end of their life. This could be someone from the cardiology team. Help patients to record their wishes in an advance care plan. Make sure it's updated regularly. They should consider treatment options and where they want to be cared for towards the end of their life. The patient should be encouraged to make informed decisions about their care. Check what they understand about their illness. Ask them to repeat any information you've told them using their own words. Make sure they have information about what may happen as their illness progresses. Share the British Heart Foundation's information about heart failure for patients. Order a free booklet for your patient about planning for the future. Support them to make decisions about treatmentsAs well as having an advance care plan, patients should be given the chance to discuss the following issues:
Read more about advance care planning. Supporting those around the patientThose close to the patient may also need emotional and practical support. They may need:
Share information for carers about supporting someone with a terminal illness. If the patient's heart failure is due to an inherited heart condition, their family may have concerns about their own health. Talk to them about their worries. It might be appropriate to refer immediate family members to a clinic which specialises in inherited heart conditions. This may have been done when the patient was first diagnosed. Inherited heart conditions services offer specialist assessment and investigations, genetic counselling and testing. GPs can refer to this service. Share information from the British Heart Foundation about inherited heart conditions and referrals to specialist assessments. When to ask for helpIf you're worried about the patient's medication or symptoms, speak to either
Useful resourcesBHF (British Heart Foundation) booklet for professionals: Difficult conversations – talking to people with heart failure about the end of life NICE guideline: Chronic heart failure in adults: diagnosis and management NICE Clinical Knowledge Summary: Heart failure – Chronic BHF information for patients: Heart failure Key points
How do you know if heart failure is worsening?Fatigue and Activity Changes
The easiest way to know that heart failure is getting worse is you're able to do less and less. People start pacing themselves. They stop doing hobbies that involve any physical activity. They used to go fishing, but not anymore.
Which are two signs of worsening heart failure?Heart failure signs and symptoms may include:. Shortness of breath with activity or when lying down.. Fatigue and weakness.. Swelling in the legs, ankles and feet.. Rapid or irregular heartbeat.. Reduced ability to exercise.. Persistent cough or wheezing with white or pink blood-tinged mucus.. Swelling of the belly area (abdomen). What is the last sign of heart failure?In the final stages of heart failure, people feel breathless both during activity and at rest. Persistent coughing or wheezing. This may produce white or pink mucus. The cough may be worse at night or when lying down.
What are 3 things that can worsen heart failure and why?All of the lifestyle factors that increase your risk of heart attack and stroke – smoking, being overweight, eating foods high in fat and cholesterol and physical inactivity – can also contribute to heart failure.
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