Fluid build-up: oedema, lymphoedema and ascites in palliative care

Oedema, lymphoedema and ascites are common problems in patients with terminal illness.

Here we discuss what you can do for your patients with:

• peripheral oedema, which is swelling under the skin
• lymphoedema, which is swelling under the skin due to failure of the lymphatic system
• ascites, which is fluid build-up in the abdomen.

There are other types of oedema that might require specialist management, including cerebral oedema (fluid in the brain) and pulmonary oedema (fluid in the lungs).

On this page:

Peripheral oedema

Oedema is the clinical word used to describe a build-up of fluid in the tissues of the body, which causes the affected body part to become swollen.

Depending on the cause, oedema can be localised (affects a specific area), or generalised (affects the entire body).

Oedema can happen if someone has a specific condition, like chronic heart failure, kidney failure, or liver disease. But it can happen to any patient at the end of their life as their body begins to shut down.

Causes of peripheral oedema

The way fluid is regulated in the body is complicated and it relies on lots of different factors.

Fluid is constantly being released into the body’s tissues, to feed cells with oxygen and nutrients.

At the same time, fluid is absorbed back from the tissues into the general circulatory system (the system which supplies oxygen to the body and removes waste), so that it can excrete waste products and other substances.

When something goes wrong with this system, fluid can build up in the tissues, causing oedema.

There are a number of things which can cause this mechanism to become faulty:

• Illnesses, such as heart failure, kidney failure and liver disease.
• Tumours, as they can increase the pressure on veins, causing changes in the pressure of the blood inside the veins. This pushes fluid out, leading to oedema.
• Medications which cause water retention. These include steroids, non-steroidal medicines such as ibuprofen, and opioids such as morphine.
• Treatments for cancer, like chemotherapy and radiotherapy.
• Blockages in the veins, such as a clot in the leg (venous thrombosis), in the lung (pulmonary embolism) or in a major blood vessel such as the superior vena cava.
• Being immobile for long periods.
• A very low level of protein in the blood (hypoalbuminemia).
• At the end of life, when the systems of the body, such as the heart and kidneys, begin to shut down.

Symptoms of peripheral oedema

Peripheral oedema normally affects the legs and ankles but can also affect the torso, back, sacrum (bottom of the spine) and hands, especially in patients who spend most of their time lying down.

Peripheral oedema can cause:

• swollen or puffy skin
• thinning of the skin so it looks stretched or shiny
• pain and discomfort
• stiff joints which feel heavy or achy
• a feeling of tightness or heaviness
• pitting of the skin (so that when you press on your skin for around five seconds, your finger leaves a dent in the skin)
• leaking of fluid from the skin, when the oedema is severe.

Treatments for peripheral oedema

If you think your patient has developed peripheral oedema, speak to their medical team. They will try to find out what’s causing the oedema. They will also need to rule out other things which can cause swelling, such as venous thrombosis or superior vena cava obstruction.

Read more about superior vena cava obstruction.

If they can identify the cause of the oedema, they’ll treat it directly. The way they treat it will depend on what’s causing the oedema.

Your patient may be referred to a specialist physiotherapist, occupational therapist or nurse for advice. They can recommend techniques to get relief from the symptoms. Sometimes medicines such as diuretics can help.

Supporting someone with peripheral oedema

There are things you can do to help your patient if they have oedema:

• Keep the swollen limb raised.
• Avoid tight or restrictive clothing, particularly around the abdomen if the oedema is in the lower limbs.
• Help the patient to put on compression stockings or sleeves, if they’ve been prescribed. This can be tricky but there are special applicators to help.
• Encourage the patient to do gentle exercise, if they can. This might include walking for short periods or exercises in bed – check their care plan for details of any exercise they’ve been recommended.
• Keep the limb well moisturised to prevent the skin drying out.
• Avoid carrying out blood pressure checks, cannulation, venepuncture or injections on the affected area.
• Monitor the affected area for signs the patient has developed an infection, such as cellulitis, including skin that:
  • feels hot to touch
  • has increased swelling or
  • feels tight to the touch or
  • looks red, purple, or darker than the surrounding area. Read more about cellulitis.

A patient with oedema can develop pressure sores, as the thin, stretched skin is more prone to breaking. You can help to prevent pressures sores:

• Keep the patient’s skin clean and dry.
• If skin is leaking fluid, clean the skin and keep the area that the limb is resting on dry.
• Move the position of limb regularly.

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Lymphoedema

Lymphoedema is a chronic swelling in the tissues of the body caused by blockage or failure of the lymphatic system.

The lymphatic system plays an important role in the body. It helps to maintain fluid levels, absorb and transport fats, and it is also part of the immune system. When something goes wrong with the lymphatic system, this can cause lymphoedema.

The lymphatic system plays a key role in regulating the amount of fluid in the body’s tissues. The way it does this is outlined below.

Fluid enters the lymphatic system via capillaries.

This fluid is made up of plasma and proteins, cell debris, microorganisms, and immune cells. Once this fluid has entered the lymphatic system, it becomes known as lymph fluid.

The capillaries feed this fluid into tiny tubes called lymph vessels. These lymph vessels carry fluid away from the capillary beds in the tissues and towards the heart. Along the way, they connect with a series of lymph nodes.

The lymph nodes filter out and destroy debris and bacteria from lymph fluid.

Once the lymph nodes have cleaned the fluid, the bigger lymph vessels (known as lymphatic trunks) then carry the cleaned fluid back to the heart, where it enters the bloodstream.

If there is a problem with the lymphatic system, this fluid isn’t drained away properly and builds up under the skin.

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Causes of lymphoedema

There are two main types of lymphoedema - primary and secondary. Primary lymphoedema is caused by a faulty gene and is present at birth. Secondary lymphoedema develops when a working lymphatic system becomes damaged.

There are a number of reasons why the lymphatic system may become damaged.

Cancer

Lymphoedema is often caused by cancer and treatments for cancer.

Lymph nodes can be affected by cancer as they filter cancer cells from the lymph fluid.

A tumour can also block fluid from being drained, which can cause lymphoedema. Often when a person has surgery to remove a tumour, the lymph nodes in that part of the body will be removed too. This makes sure that as many of the cancer cells as possible are removed.

Any lymph nodes which have cancer growing in them and which haven’t been removed can block the flow of lymph fluid through the system. This causes increased pressure in the lymph vessels. This increased pressure pushes lymph fluid out into the tissues, causing lymphoedema.

Radiotherapy

Radiotherapy can also damage the lymphatic system and cause lymphoedema. Sometimes lymphoedema doesn’t occur until many years after cancer treatment.

A common cause of lymphoedema is radiotherapy for breast cancer, particularly if the patient has had lymph nodes removed during surgery. People who have this treatment are advised to take special precautions with the arm on the side that has received radiotherapy. This can help to prevent lymphoedema from occurring.

Special precautions to avoid lymphoedema include not having injections or blood taken in the arm in which the patient had radiotherapy. Patients should also avoid hot baths, saunas, sunburn and other situations that can cause changes in temperature.

Lack of movement

Movement and exercise help lymph fluid to drain properly, because muscle activity surrounding the lymphatic vessels massages fluid along them. If a patient is moving less, this can lead to lymphoedema.

Inflammation

Medical conditions which cause the skin to become discoloured and swollen can cause lymphoedema. For example, rheumatoid arthritis and eczema can cause lymphoedema. Discolouration might be red, purple, or darker than the surrounding area.

Diseases of the veins

Varicose veins and deep vein thrombosis can cause lymphoedema as they can affect the flow of blood in the veins, leading to fluid overflowing in the surrounding tissues.

Symptoms of lymphoedema

Lymphoedema most commonly affects the arms or legs, but can also happen around the torso, head, neck and genitals.

Symptoms of lymphoedema are similar to peripheral oedema (above) and include:

• swelling
• pain or discomfort
• a feeling of tightness or heaviness
• difficulty moving
• leaking of fluid from the skin (lymphorroea)
• thickening of the skin
• infections – lymphoedema means you have a higher risk of infection if you have a cut or scratch in your skin.

Lymphoedema can be very distressing for patients. Having a swollen part of the body can be a visible reminder of their illness. It can affect their body image and contribute to anxiety and depression.

It’s important to give your patient the opportunity to express their feelings about having lymphoedema. Being honest, asking open questions, and letting them know there is support available can help them feel reassured.

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Treatments for lymphoedema

The patient’s doctor can refer them to a specialist team for assessment, if one is available in their area.

Contact the Lymphoedema Support Network to find out about local lymphoedema services.  

Lymphoedema can’t be cured but there are things you can do to manage it. There are four main parts to treatment:

• Compression — wearing special garments which gently squeeze the part of the body that’s affected to encourage the fluid to drain away.
• Manual Lymphatic Drainage — a specialist massage that encourages the fluid to drain away. This can be done by the patient themselves, their carer, someone in their support network or a health professional.
• Skin care — keeping the skin clean and moisturised. Any cuts or scratches should be cleaned with an antiseptic and covered with a plaster to reduce the risk of infection.
• Exercise — moving the body, even a little bit, helps the lymphatic fluid to drain away.

There may be other specialist treatments available in some areas.

Supporting someone with lymphoedema

There are things you can do to help encourage the fluid to drain:

• Help the patient to put on their compression garments — this can be tricky but there are special applicators available to help.
• Elevate their feet when they’re sitting. They might find a footstool comfortable.
• Help them to find the most comfortable positions to sit and lie in.
• Encourage gentle exercise. Check the patient’s care plan for details of any exercise they’ve been recommended.
• Massage can be helpful for managing lymphoedema. A lymphoedema specialist can teach you, family members and other caregivers, how to do it. Don’t attempt to massage the patient unless you’ve been shown how to do it.
• Try to identify when the patient is most affected by the symptom. For example, some patients may be more affected in the afternoon or evening than the morning.
• Look for stretched or broken skin and monitor it for discolouration and pain, and keep the affected areas moisturised. Discolouration might be red, purple, or darker than the surrounding area.

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Skin care and cellulitis in patients with oedema or lymphoedema

It’s very important to keep the patient’s skin in good condition if they have oedema or lymphoedema. Cuts or scratches can allow bacteria to enter under the skin, leading to an infection called cellulitis. Cellulitis generally needs to be treated with antibiotics.

Look out for any signs of cellulitis, including if:

• the skin looks red, purple, or darker than the surrounding area
• the skin feels hot to touch
• the swelling has increased
• the patient feels pain around the swelling
• the patient has other signs of infection such as fever and feeling tired.

Speak to the patient’s medical team or your manager if you suspect cellulitis, so that antibiotics can be started quickly if required.

Check the patient’s care plan for any information about their skin routine. Skin care for people with oedema and lymphoedema can include:

• washing the skin regularly with gentle soap and water
• drying the skin thoroughly after washing
• moisturising daily with emollients
• keeping the skin dry if there is any leakage of fluid (lymphorroea).

It is very important that procedures such as cannulation, blood pressure monitoring and venepuncture are not carried out on an arm or leg affected by lymphoedema, as any break in the skin can open a route for bacteria and lead to cellulitis.

Ascites

Fluid build-up in the abdomen is known as ascites. Ascites can happen when the fluid isn’t being drained from the tissues into the circulatory system properly. This could be because the circulatory system is failing, or because drainage is blocked, for example by a tumour. 

Ascites can happen in different illnesses including:

• cancer, most commonly ovarian cancer
• heart failure
• kidney failure
• liver failure.

Symptoms of ascites can include:

• pain or discomfort in the abdomen
• a swollen abdomen
• difficulty sitting upright
• nausea and vomiting
• loss of appetite
• acid reflux
• constipation
• breathlessness.

Treatment for ascites

If you think your patient has ascites, tell a senior healthcare professional as soon as possible. It is important that ascites is managed quickly, in order for treatment to be effective. Ascites often requires specialist care. Treatment may include:

• inserting a tube into the abdomen to drain the fluid (paracentesis)
• medication to reduce the fluid, like diuretics
• medication to manage any pain, constipation, nausea or vomiting
• reducing the amount of salt in the patient’s diet.

If the ascites happens again, and the patient is fit enough, an indwelling drain may be inserted. This allows drainage of the ascites at home, usually by the district nurses. Occasionally when a patient is fit enough, an operation can be done to insert a shunt that drains the fluid from the abdomen back into the circulatory system. This is uncommon, especially if a patient is towards the end of life.

Supporting someone with ascites

If you think your patient has ascites, it’s important to tell a senior health professional as soon as possible. There are also ways you can help someone with ascites to be more comfortable:

• Help them find the most comfortable positions to sit and lie in. For example, being on their back with their upper body raised slightly, or on their side.
• Prevent pressure sores by helping with skin care. Read more about how to care for a patient’s skin above.
• Support a patient if they want to move about, as walking can be difficult and tiring. The patient may need walking aids, and periods of exercise should be short with lots of rest in between.
• Check if they are in pain and let their doctor or specialist nurse know if they need any more pain relief to be prescribed.
• Report any sudden swelling in any part of the body to the doctor straight away – this may be a sign of something more serious.
• Monitor for signs of infection, as fluid in the abdomen can become infected. Signs of infection include a temperature, and the patient beginning to feel more unwell or in pain.
• Monitor the patient for signs of increasing breathlessness. Breathlessness can be caused by pressure from the swollen abdomen pressing on the lungs. Or, it can be a sign that fluid is starting to enter the lung. If you notice this, tell a senior professional immediately.

Share our free booklet on managing ascites with your patient.

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Useful resources

• BMJ Learning Module on lymphoedema  
• British Lymphology Society  
• Lymphoedema Support Network  

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