Lymphoedema and oedema

Please be aware - this information is for healthcare professionals

Oedema is the clinical word used to describe a build-up of fluid in the body, which causes affected tissue to become swollen.  Fluid build-up is usually due to a person’s bodily systems being compromised by an illness or condition, such as cardiac failure, or by surgical procedures. 

The main sites for oedema are the arms, hands and fingers, legs, ankles and toes and the abdomen, although it can occur anywhere in the body.

Why are the patient’s ankles and arms swollen and puffy?

Fluid drains from the body in several ways, primarily through the blood circulation system and the lymphatic drainage system. As the body changes towards the end of life, bodily systems such as fluid drainage begin to shut down. 

During the dying process, oedema can occur in the upper and lower extremities of the body such as the arms and legs, particularly where mobility is reduced. If the fluid load becomes excessive, the skin may become shiny due to the tightness caused by the fluid. Sometimes, fluid may leak out – this happens when the skin integrity has been affected. When this happens, there is a high risk of infection. 

Cellulitis is an infection of the deeper layers of skin and underlying tissue. This is caused by bacteria entering tissue beneath the skin, which leads to an infection in the fluid. This then causes the fluid to leak out of cells under the skin. It occurs most often in the legs. 

Cellulitis generally requires antibiotics. Unless the skin becomes infected, oedema does not need to be treated with antibiotics. 

Surgery for breast cancer can involve removing the lymph nodes situated in the arm pit (axilla). This may cause lymphoedema, which is the accumulation of fluid in the arm and local chest area and is a result of the body’s inability to remove fluid from the area. 

Other causes of lymphoedema are steroids, gynaecological issues, malignant melanoma, low protein levels and any surgery or radiotherapy that is likely to damage the lymphatic system. Immobility and inactivity are also factors. 

Speak to a GP, specialist nurse or district nurse if you are concerned about oedema. They will need to rule out other possible issues such as deep vein thrombosis or superior vena cava obstruction.  

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Why is the patient’s abdomen swollen? 

Liver disease can cause a condition called ascites, which is a build-up of fluid in the abdomen causing swelling, discomfort, nausea and breathing difficulties.

Sometimes, it is possible to insert a catheter into the abdominal cavity through the skin to drain off some of the fluid. This is called ascitic drainage and will usually take place in a hospital or hospice. Occasionally, a specialist doctor may be able to perform the procedure at the patient’s home. 

There are specialist techniques that can be used to identify ascites manually, such as auscultation (a process of listening to internal body sounds using a stethoscope and tapping on the abdomen).  However, diagnosis is usually made following an abdominal ultrasound that takes place in a hospital or hospice. 

Speak to a GP, specialist nurse or district nurse if you are concerned about ascites. 

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Is there anything I can do to help? 

It’s important to speak to other members of the multidisciplinary team if you have any concerns about infection.

You should also try to keep the skin clean by using warm water, moisturisers and emollients.

Because the build-up of fluid is often associated with immobility, you could encourage your patient or client to do gentle exercise, if appropriate. This could be making figure of eight motions with their toes to exercise their ankles. Elevating the limbs using pillows can also be helpful. 

If the patient is affected by lymphoedema, a referral to a lymphoedema clinic, if there’s one in your area, could be useful. The GP, district nurse or specialist nurse can do this. Special massages called medical lymphatic drainage can be given to patients at these clinics to help drain their arms, and compression hosiery for the arms and legs can be prescribed to help manage fluid build-up. The massage techniques can be taught to any carers, family members or friends so that they can continue the therapy at home. 

The patient would need to be measured for prescribed pressure stockings/sleeves, because an incorrect fit may cause more damage. Putting the sleeve on can be tricky and there are special applicators available to help. 

It’s important to note that lymphoedema clinics aren’t available in all areas of the UK. 

Diuretics can be prescribed to help manage the build-up of fluid. If the patient is taking diuretics, it’s important to consider toileting issues such as access to a bathroom, a commode or use of continence pads, as they’re likely to pass more urine more frequently.  . It is good practice to check that the patient is taking diuretics along with an adequate amount of fluids. 

It is very important that procedures such as cannulation, blood pressure taking and venopuncture are not carried out on an arm affected by lymphoedema, as infection may occur. 

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Who else should I talk to? 

  • A district nurse
  • The specialist palliative care team
  • A lymphoedema clinic
  • The patient’s GP.

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Points to remember

  • Oedema usually affects the arms, legs, fingers, toes and abdomen, although it can occur anywhere in the body.
  • During the dying process, skin integrity can be affected which increases the risk of infection.
  • Caring for the skin using moisturisers, emollients and medical lymphatic drainage can help.
  • Be aware of ascites, which causes abdominal swelling.
  • Speak to a GP, specialist nurse or district nurse if you are concerned about infection. 

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