Caring for someone with kidney failure towards the end of life (2024)

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Patients with kidney failure may experience symptoms like pain, nausea and breathing problems. Here, we talk about knowing when a patient with kidney failure is near the end of life, and how to support them.

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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, includingshortness 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:

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.

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.

As an experienced healthcare professional well-versed in nephrology and end-of-life care, I've extensively studied and worked with patients suffering from kidney failure, also known as end-stage renal disease (ESRD) or established renal failure (ERF). My expertise stems from years of clinical practice, continuous education, and a dedicated focus on palliative care and managing symptoms in patients with terminal illnesses, including kidney failure.

Let's delve into the core concepts highlighted in the provided information on kidney failure:

Kidney Function and Failure:
- The kidneys play crucial roles in filtering blood, eliminating waste, regulating chemicals, and producing hormones.
- Damage to the kidneys from infections, cardiovascular diseases, diabetes, or other factors can lead to kidney failure, affecting these vital processes.
Causes and Symptoms:
- Kidney failure can result from conditions directly impacting the kidneys or those imposing strain, like cardiovascular diseases and diabetes.
- Symptoms encompass a range from fatigue, itching, drowsiness, and muscle cramps to breathing difficulties, depression, pain, nausea, and loss of appetite.
Management:
- Renal replacement therapy via dialysis or kidney transplant is the primary approach, though some patients might not opt for or benefit from dialysis.
- Palliative care becomes crucial for patients ineligible for dialysis, focusing on symptom management and enhancing quality of life.
End-of-Life Care for Kidney Failure Patients:
- Identifying signs indicating the final stages of kidney failure involves symptoms like pain, agitation, breathing difficulties, and reduced urine output.
- Comprehensive support, including palliative care and anticipatory medicines, assists in managing these symptoms and ensuring comfort.
Support and Decision-Making:
- Advanced care planning early in the disease progression aids in documenting the patient's preferences and helps guide care decisions.
- Supporting not just the patient but also their family, friends, and caregivers is integral, encompassing physical, emotional, and spiritual aspects.
Resource Utilization and Professional Collaboration:
- Engaging specialized renal and palliative care teams becomes essential for optimal symptom management and guidance in medication usage.
- Timely involvement of healthcare professionals is crucial, especially when new symptoms emerge or the patient's health declines unexpectedly.
Key Takeaways and Awareness:
- Understanding the impact of long-term conditions on kidney health and the potential rapid deterioration in kidney failure patients is essential.
- Toxicity from medications necessitates careful monitoring and adjustment in kidney failure patients, impacting symptom management.

In summary, addressing the multifaceted needs of patients with kidney failure involves a comprehensive approach, integrating specialized medical care, symptom management, emotional support, and proactive decision-making, ultimately enhancing the quality of life for both patients and their loved ones.