Caring for someone with heart failure towards the end of life
Please be aware - this information is for healthcare professionals.
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 failure
Heart 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 failure
There may be more than one cause. Common causes include:
- coronary heart disease – problems include heart attack or angina (chest pain)
- cardiomyopathy (a disease of the heart muscle)
- high blood pressure.
Other causes include:
- heart valve disease
- congenital heart disease (heart disease present from birth)
- a viral infection affecting the heart muscle
- an abnormal heart rhythm
- some chemotherapy medications
- anaemia (not having enough red blood cells or haemoglobin)
- excess alcohol or recreational drugs.
Acute or chronic heart failure
Heart failure can be acute or chronic.
Acute heart failure happens when either:
- symptoms come on suddenly
- it's the first time the patient has had heart failure
- symptoms suddenly become worse during chronic heart failure.
Chronic heart failure is when someone's heart failure develops gradually over time and is a long-term condition.
Symptoms of heart failure
Common symptoms of heart failure include:
- breathlessness – either when resting or being active
- swelling of legs, ankles, feet, abdomen (tummy) or around the lower back area
- fatigue (extreme tiredness).
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 failure
Your 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:
- Class 1: no limitation of physical activity. Ordinary physical activity does not cause undue fatigue, breathlessness, or palpitations.
- Class 2: slight limitation of physical activity. Comfortable at rest but ordinary physical activity results in undue breathlessness, fatigue, or palpitations.
- Class 3: marked limitation of physical activity. Comfortable at rest but less than ordinary physical activity results in undue breathlessness, fatigue, or palpitations.
- Class 4: unable to carry out any physical activity without discomfort. Symptoms at rest can be present. If any physical activity is undertaken discomfort is increased.
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 failure
Treatment for heart failure includes:
- healthy lifestyle changes, such as keeping active and having a healthy, balanced diet
- medication
- implantable devices, such as a pacemaker
- surgery.
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:
- community heart failure nurses
- community nurses
- occupational therapists
- physiotherapists
- dietitians
- GP
- cardiologist
- out-of-hours services
- a hospice team.
Signs that a patient with heart failure is near the end of life
If 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:
- pain
- breathlessness on minimal exertion or at rest
- persistent cough
- fatigue (extreme tiredness)
- limited physical activity
- depression and anxiety
- constipation
- loss of appetite and nausea (feeling sick)
- oedema (fluid build-up)
- insomnia (problems sleeping)
- cognitive impairment (problems with memory, speech or language).
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 life
People with heart failure may experience different emotions and feelings. They may feel:
- angry
- sad
- worried or anxious
- depressed
- up and down, with good days and bad days
- like they lack control over their life
- like it's hard to cope with the reactions of others.
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.
Fatigue
Fatigue 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.
Order a free booklet for your patient about managing fatigue.
Breathlessness
Breathlessness 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 oedema
Peripheral 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).
Pain
Some 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.
Order a free booklet for your patient about managing pain.
Nausea and vomiting
If 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 anorexia
Cardiac 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 impairment
Cognitive 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.
Share online information with your patient about delirium.
Supporting patients with heart failure
There 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 symptoms
People 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 planning
The 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 treatments
As well as having an advance care plan, patients should be given the chance to discuss the following issues:
- Whether to deactivate an implantable cardioverter defibrillator (ICD), if they have one. This can prevent the ICD activating at the end of life, which can be distressing. Share information from the British Heart Foundation about deactivating an ICD.
- What the patient would want to happen if they had a cardiac arrest. They may decide they do not want to have cardiopulmonary resuscitation (CPR). Share information for patients about CPR decisions.
- When to stop medication that no longer reduces symptoms or improves their quality of life. This can be a difficult conversation and it's best carried out sooner rather than later. Make sure the patient and the people important to them understand what changes are being made to their medication and why.
Read more about advance care planning.
Supporting those around the patient
Those close to the patient may also need emotional and practical support. They may need:
- information about heart failure to help them understand the symptoms and treatment options
- support if they're caring for the patient
- time to relax or look after their own health.
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.
When to ask for help
If you're worried about the patient's medication or symptoms, speak to either
- your line manager
- a member of their healthcare team.
Useful resources
NICE guideline: Chronic heart failure in adults: diagnosis and management
Key points
- Symptoms of heart failure can get better and worse. This can make it difficult to know how long the patient might live for.
- Give patients information about their condition and the impact it may have on their life. This can help them to make decisions about their care at later stages.
- Start conversations about end of life care early. This helps make sure the patient's wishes are met.
- There are specialist heart failure nurses in some parts of the country who can help with end of life care.
This information was provided with support from the British Heart Foundation
Did you find this page useful?
Help us be there for anyone with an illness they're likely to die from by telling us what you think.
If you are completing this survey using a desktop computer, hold down the Ctrl button to select multiple options.
Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
