Introduction
It is common when someone is reaching the end of their life that they eat and drink less.
Whilst this is part of the changes that happen in the body as someone becomes more unwell, it is sometimes worrying for those close to the person to see.
This leaflet provides information on:
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What may happen as a person eats and drinks less
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Some simple measures which can help to keep them comfortable
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When someone may benefit from receiving some extra fluids through a drip
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How extra fluids can be given through a drip in a person’s home using something called a subcutaneous fluid infusion
Food and drink at the end of life
As a person enters the last stage of their illness, their body’s need for nutrition and fluid changes. They may find it too tiring to eat and drink much or may be spending increasing amounts of time asleep. Usually, their appetite and thirst are also reduced and they do not find having only small amounts of food and drink distressing.
If they do have sensation of thirst or dry mouth, this can often be relieved by simple measures such as:
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Sips of drinks – whatever the person prefers
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Sucking on ice lollies or ice chips
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Mouth care – to clean and moisten the mouth
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Assistance with brushing teeth or cleaning dentures
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Application of lip balm to relieve dry lips
Sometimes a person may benefit from some extra fluids to help keep them comfortable at the end of their life.
When might someone benefit from receiving extra fluids?
Sometimes, despite the simple measures described earlier, there are situations where giving extra fluids may help relieve symptoms at the end of life.
These include:
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Where someone is having symptoms which may be related to dehydration, such as:
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Thirst or desire to drink, but unable to take much fluid
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Delirium – confusion and restlessness
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Dry mouth
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Where someone is struggling to drink due to nausea or vomiting
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Where someone is in the end stages of their illness, but their condition is deteriorating very slowly
Who will decide if extra fluids are needed?
The question of whether extra fluids can be given can be raised by the patient and their carers, or by nursing or medical staff looking after the patient.
This may be the GP, the district nurses or the specialist palliative care team. The doctor and nurses will discuss the options with the patient, if they are able, and with the patient’s carers, to come to a decision about whether to try giving extra fluids through a drip under the skin. This is known as a “subcutaneous fluid infusion”.
The aim of giving extra fluids to someone approaching the end of their life is to help them to feel more comfortable. It is uncertain whether extra fluids have any effect on how long someone will live.
What is a subcutaneous fluid infusion?
You may have seen fluid infusions or ‘drips’ used in hospital before. These are usually intravenous (IV) infusions, where the fluid goes into the vein. Another way to give fluid is under the skin. This is called subcutaneous fluid infusion.
Subcutaneous infusions are easier and safer to use when a patient is not in hospital. This is because they are easier to set up and do not need close medical supervision.
Even if ‘the drip’ falls out it does not cause serious problems. This way of replacing fluids has been used safely for several decades.
How is a subcutaneous fluid infusion given?
A small needle is used to place a soft plastic tube just under the skin. This is usually placed on the chest, abdomen, upper arms or thighs.
A bag of fluid is connected using a longer tube to the tube sitting under the skin. This tube has a drip chamber (like a little window) that shows how quickly the fluid is flowing and a roller clamp, similar to the one in the picture, to control how fast the fluid goes in.
The district nurse will show you how to stop the infusion should any problems arise. The district nurse will visit regularly, at least twice every 24 hours, and will discuss and arrange their visiting patterns with you.
What are the possible side effects or problems?
Problems which may occur due to the infusion include:
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Irritation or tenderness around the site of the plastic tube.
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Infection at the site of the plastic tube: redness, pain, swelling and/or weeping.
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Infusion fluid not being absorbed properly and collecting under the skin causing swelling. This can be uncomfortable, but often clears within a few hours ofstopping the infusion and does not have any lasting effects.
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If the body is not able to handle the extra fluid, sometimes this can cause fluid build-up in in the legs or lower back causing swelling (oedema). Fluid can also collect on the lungs and cause a noisy chest or shortness of breath.
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The person may need to pass urine more often, which can cause distress in some cases.
The district nurses and doctors will monitor for any signs that problems are developing, but if you notice any changes that you are concerned about, please contact the team using the numbers on the last page for advice on what to do.
When might the subcutaneous fluid infusion be stopped?
If any of the problems described earlier develop, the situation will be reassessed to decide whether it is still in the person’s best interests to continue with the drip.
Even if no problems have occurred, the doctors and nurses will assess to see whether the drip has helped improve the symptoms for which it was started. If there has been no benefit, the drip may be stopped even if it is not causing any significant problems.
In either case, the decision will be discussed with the patient and the carers to come to an agreed plan. If, at any point, the patient decides that they wish to stop ‘the drip’ then their decision must be respected.
Patient Advice and Liaison Service (PALS)
If you have some concerns, questions or need advice on our services, you can contact the Patient Advice and Liaison Service (PALS) on 0800 234 6088 or email the PALS team.
Feeling low and need someone to talk to?
Call 0800 915 4640
Monday to Friday 7pm to 11pm Saturday to Sunday 12noon to midnight.
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