Caring for someone with heart failure at the end of life
Please be aware - this information is for healthcare professionals
Heart failure is a complex clinical syndrome of symptoms and signs that suggest the heart isn’t pumping blood around the body as efficiently as it should.
It’s most commonly caused by:
- damage to the heart muscle, for example as the result of a heart attack
- cardiomyopathy (a disease of the heart muscle)
- high blood pressure.
It can also be caused by:
- heart valve problems
- congenital heart disease
- a viral infection affecting the heart muscle
- an uncontrolled irregular heart rhythm
- some types of chemotherapy.
Heart failure can be chronic or acute:
Acute heart failure is when the symptoms of heart failure come on suddenly, when heart failure is diagnosed for the first time, or if symptoms suddenly become worse during long-term (chronic) heart failure.
Chronic heart failure is when someone has heart failure as a long-term condition.
What are the symptoms?
The symptoms of heart failure include:
- swelling as a result of fluid retention.
How can heart failure affect people at the palliative and end of life stage?
Having heart failure can have a significant psychological impact on a person. Life may feel very up and down, with good days and bad days. People can feel low about their symptoms and limitations, or they may feel that they lack control over their life. It can be particularly shocking for someone if they have been told their outlook is poor.
Symptoms can fluctuate at the advanced stage of heart failure, making it hard to estimate prognosis. This can make it difficult to know how and when to discuss the future and find out how someone would like to be cared for at the end of their life.
The main physical symptoms of heart failure at the end of life include:
Fatigue and breathlessness
Fatigue and breathlessness are the most common symptoms of heart failure and people can find them very limiting and distressing. However, it’s important to rule out any other possible causes of fatigue and breathlessness. For example, fatigue can also be caused by anaemia, insomnia (due to orthopnoea – breathlessness on lying flat), depression, and inappropriate exercise. Other causes of breathlessness can include anxiety and psychological changes. For more, see our information on weakness and fatigue and breathlessness.
This is a build-up of fluid, usually in the lower legs and ankles, which causes the affected tissue to become swollen. Heart failure happens because the heart is not pumping efficiently, which can lead to a build -up of fluid. For more, see our information on oedema.
Some people with heart failure can experience pain or discomfort at the end of their life. They should be assessed using a pain scale. Opioid (eg morphine and diamorphine) and non-opioid analgesia can be used to relieve pain and discomfort. Complementary therapies such as reflexology, acupuncture and aromatherapy may also help. If it’s not possible to control a person’s pain, you should liaise with their palliative care and pain control teams.
For more information, see our page on pain control.
Nausea and vomiting
If a person is affected by nausea and vomiting, it’s important to identify potential causes and try to treat them. Nausea and vomiting could be caused by medication, anxiety, constipation or other gastric disturbances. You could suggest that the person tries to eat small snacks or use a smaller plate. They may also need to consider their position when eating. For more, see our information on nausea and vomiting.
Cardiac cachexia/anorexia is characterised by loss of appetite, profound weight loss and loss of muscle and fat tissue. You could suggest the person tries eating small, frequent meals. You should consider high calorie, high protein food, and supplement drinks. A dietitian will be able to provide you and your patient with further guidance.
As their condition progresses, some patients may experience depression. Healthcare professionals need to assess its severity. The least intrusive, most effective interventions, such as cognitive behavioural therapy and art and music therapy, should be provided before medication is prescribed.
What special considerations should I make in my approach to providing care for someone with heart failure?
The progression of heart failure can be unpredictable, which makes it difficult to know when to have conversations about end of life care. It’s important to discuss things as early as possible, giving people the time to think about treatment options and where they want to be cared for towards the end of their life. This may help them achieve some peace of mind and a sense of control.
It’s important that the person is able to make informed decisions about their care, so it would be good idea to find out if they have enough information about their condition, and how it may impact their life at the palliative stage.
Where possible, it’s helpful to start conversations about the following:
- If the person has an ICD (Implantable Cardiovascular Defibrillator) there are important implications to discuss, including deactivation towards the end of their life
- What the person would like to happen in the event of a cardiac arrest, and whether they would like to be resuscitated or not
If you don’t feel qualified to have these conversations with the patient, speak to their GP.
Some parts of the country have specialist heart failure nurses who can be involved in a person’s palliative care, so you may want to look into this. They can visit people at home, in hospital or a hospice and give the person and their family support and guidance.
If the person’s heart failure is due to an inherited heart condition such as hypertrophic cardiomyopathy, their family may have concerns about what the future holds for them or the person’s children, if they have any. You should give the family an opportunity to voice their worries and, if it’s appropriate, mention the possibility of referring family members to a clinic which specialises in inherited heart conditions.
Inherited heart conditions services sometimes involve genetic counselling and testing. The GP will be able to help with referrals or you could signpost the patient to the British Heart Foundation genetic information service, which can also help with referrals.
Considerations around discontinuing a person’s medication are usually made in the last stages of life. This can be a difficult conversation and is often best led by the GP or another senior professional involved in the patient’s care. Be aware that relatives may struggle with the idea of medication that has benefitted the patient, possibly for a long time, being withdrawn.
This content has been provided by the British Heart Foundation.
Points to remember
- Symptoms of heart failure can fluctuate, making it difficult to estimate prognosis.
- People diagnosed with heart failure should be provided with suitable information about their condition and the impact it may have on their life, to enable them to be involved in decisions about their care.
- Starting conversations early about end of life care is essential in making sure someone is cared for in the best possible way and that their wishes are met.
- There are specialist heart failure nurses in some parts of the country who can help with a person’s end of life care.
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