Caring for someone with kidney failure towards the end of life
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Kidney failure
The kidneys have two main roles. They filter the blood, removing excess water and waste products, which pass out of the body as urine.
They also make hormones which:
- help make new red blood cells
- regulate the amount of chemicals in the body.
Damage to the kidneys may lead to kidney failure, which can affect these processes. Kidney failure is also known as established renal failure (ERF) or end-stage kidney disease.
Causes of kidney failure
Kidney failure is caused by:
- conditions which directly affect the kidneys, such as kidney infection
- conditions which put the kidneys under strain, such as cardiovascular disease and diabetes.
Symptoms of kidney failure
Symptoms of kidney failure include:
- fatigue
- itch
- drowsiness
- muscle cramps
- breathlessness
- anxiety
- depression
- pain
- nausea
- loss of appetite
- sleep problems
- oedema (swelling), often in the feet and legs
- restless legs
- passing small amounts of urine or none at all.
Anaemia (a low number or quality of red blood cells) is common in people with kidney failure. It can cause similar symptoms to kidney failure, including tiredness and shortness of breath.
Share our information for patients on managing symptoms when you have a terminal illness.
Managing kidney failure
Kidney failure can sometimes be managed with renal replacement therapy. This means either dialysis or a kidney transplant.
If someone is not well enough to have a kidney transplant, they can usually have dialysis.
Dialysis is a treatment where waste products and fluid are removed from the blood, either using a machine or, less commonly, using peritoneal dialysis which happens inside the body. Find out more about dialysis from the NHS website .
Some patients will not have dialysis. This may be because they:
- are not well enough
- choose not to
- have started dialysis but their health declined, so they're no longer well enough
- started dialysis but it did not improve their quality of life
- started dialysis but their symptoms got worse.
If a patient does not have dialysis, they will have care to manage their symptoms and improve their quality of life. This may include emotional support and palliative care. Patients on dialysis may also have palliative care.
Share our information for patients, and their family and friends about palliative care.
Kidney failure at the end of life
Kidney failure can affect patients in different ways. It can progress slowly in some patients and quickly in others. For patients who deteriorate quickly, the focus of their care will be on slowing the disease and managing their symptoms. If a patient has kidney failure as well as another advanced condition, such as cancer, their health may get worse more quickly.
Signs that someone may be dying from kidney failure
In the last few days of life, symptoms of advanced or end-stage kidney failure include:
- pain – for example, a headache or bone pain
- agitation
- itch due to uraemia (a build-up of toxins in the blood due to kidney failure)
- metallic taste in the mouth due to uraemia
- muscle cramps
- breathing difficulties, including shortness of breath
- noisy breathing
- nausea
- becoming bed-bound, drowsy or unconscious
- delirium (sudden confusion)
- only being able to take sips of fluid
- reduced urine output
- swelling in the feet, ankles or legs due to fluid build-up
- seizures
- difficulty swallowing tablets.
Patients may experience some of these problems at other times of their illness – ask their doctor or a colleague if you're unsure whether they are approaching the end of life.
Information for patients and their family and friends about end of life
Share our information for patients and their family and friends:
- free booklet, What to expect at the end of someone's life
- what to expect in someone's last weeks and days website page
- managing breathlessness website page
- pain when someone is dying website page.
Managing these symptoms
Some of these symptoms are a normal part of dying, such as noisy breathing, drinking less or becoming unconscious. But some people may need help to manage their symptoms. And some symptoms may be caused by a reversible problem, such as an infection. Check with the patient's doctor or another health care professional if you're unsure what to do.
Patients may have anticipatory or 'just in case' medicines at home to help manage these symptoms. Read more about anticipatory medicines.
Managing symptoms of kidney failure can be challenging. Some of the medicines used to treat symptoms can cause further damage to the kidneys. Medicines that are processed by the kidneys can build up to toxic levels and cause side effects when the kidneys are damaged.
Ask for help from the renal (kidney) team or palliative care team to make sure that the patient is on the most suitable medicines for them. If you're a prescriber, check your local guidelines.
Supporting someone with kidney failure at the end of life
There are things you can do to support someone with kidney failure at the end of life:
- Be aware of what support and treatment the patient does and does not want.
- Help them note down their preferences for their care in an advance care plan. This should be done as early as possible, especially when kidney failure is progressing rapidly. Help them review the plan as their condition progresses. Read more about advance care planning.
- Involve the patient, those important to them and their health and social care professionals when making decisions about their care.
- Consider the physical, social, emotional needs and spiritual needs of the patient and those important to them.
- Be aware of the services in your area to support the patient. Read our guide to end of life services.
- Help to keep the patient comfortable, for example by providing mouth care and continence care. Find out more about caring for someone in their last days and hours.
- Stop any tests, monitoring or medication that are no longer needed.
- Recognise symptoms of kidney failure and know when to ask for help from the patient's GP and the kidney, palliative care and end of life teams.
- Signpost patients and those close to them to information about kidney failure from charities such as the National Kidney Federation and Kidney Care UK .
Supporting those around the patient
Family, friends and carers may have supported the patient for a long time. They may have built strong relationships with the care team. Support them by:
- helping them understand how the patient's condition may progress
- telling them about local support services
- making sure they have emotional and practical support.
Read more about supporting family and friends.
Share our information with family and friends about caring for someone with a terminal illness.
When to ask for help
Ask for help if the patient has new symptoms or their health gets worse. They may be at the end of life, but they might also have a problem that can be reversed or managed. For example, they might have:
- hypercalcaemia (high levels of calcium in the blood, which can be an emergency)
- symptoms of an infection
- opioid toxicity (overdose).
If you suspect any of these, or if the patient has unmanaged pain or other symptoms, ask for help from:
- your line manager
- a member of the patient's palliative care team
- a member of the patient's kidney care team.
Useful resources
Scottish Palliative Care Guidelines - Renal disease in the last days of life
NHS England guidance: End of Life Care in Advanced Kidney Disease
Kidney Care UK – a charity that provides advice and support for patients and their family and friends
Key points
- Kidney failure is a common complication of long-term conditions like diabetes, high blood pressure and cancer.
- Patients with kidney failure can deteriorate (get worse) quickly, whether they are on dialysis or not.
- Symptoms can usually be managed with medication and palliative care.
- Toxicity from medicines is common in kidney failure and can make symptoms worse.
- Seek advice from specialist renal (kidney) and palliative care teams for help managing symptoms.
- Early advance care planning allows the person to express their wishes and preferences for their care at the end of their life.
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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.
