Hydration and nutrition in palliative care

People with a terminal illness often experience changes to the way they eat and drink. And it's common for people to stop eating and drinking in their last few days of life. There are ways to support patients with eating and drinking, and to help manage changes such as difficulty swallowing.

Causes of changes to eating and drinking

Changes to eating and drinking can be caused by:

• changes in taste and smell, which can affect the foods patients find appealing
• loss of appetite
• poor mouth care
• nausea and vomiting
• constipation
• difficulty swallowing (dysphagia)
• tiredness (fatigue)
• breathlessness
• infections
• depression, anxiety or stress
• illness, such as cancer, motor neurone disease (MND) and dementia
• treatment for illness, such as radiotherapy and some medicines
• changes to the body in the last few days and hours of life.

Eating and drinking are a big part of life for most people. Food can be comforting and enjoyable, and sharing meals is a way to connect with people. Not being able to eat and drink in the same way can be upsetting for patients and those around them. It can also cause weight loss and fatigue.

Supporting patients with eating and drinking

There are lots of things you can do to support patients with eating and drinking:

• Help them record their preferences about eating and drinking in an advance care plan. It could include foods they do and do not enjoy (which may change over time) and decisions around artificial nutrition and hydration. Read more about advance care planning.
• If they can eat and drink on their own – make sure they can reach food and drink when they want it.
• When helping someone to eat – ask them if they'd like you to support them, and how they'd like to be supported.
• Reduce distractions – for example by turning off the television and reducing chat during mealtimes.
• Allow enough time – make sure they do not feel rushed, and use insulated containers where possible, for patients that take longer to eat and drink.
• Make sure they're comfortable – help them to sit upright in bed or in a chair.
• Position yourself well – if you're helping them eat, make sure you're also comfortable and keep at eye level so you can give verbal prompts, and check for any difficulty swallowing.
• If they have dentures – find out if they wish to wear them while eating. Check they're clean and offer to help insert them if needed, making sure they fit comfortably.
• Think about portion sizes – if they have low appetite or tiredness (fatigue), small meals and snacks throughout the day can be easier to manage than big meals.
• Check if they need help to eat or drink – they may need adapted cups or cutlery, or you may need to help them.
• Plan meals and snacks for when they have the most energy.
• Help them go to the toilet if they need to – this can help them feel more comfortable before they eat.
• Clean and clear the eating area – cover any medical equipment such as catheter bags.
• Help them enjoy the social part of eating – if appropriate, include them in mealtimes with other people.
• Help them with mouth care.
• If they have glasses or hearing aids – encourage they wear them and check they fit comfortably, as enjoying eating can be helped by using different senses. Being able to see the food, and hear any guidance (for example to slow down) can help the patient have a more enjoyable eating experience.

Difficulty swallowing (dysphagia)

There are many things that can cause difficulty swallowing, including:

• motor neurone disease (MND)
• multiple sclerosis (MS)
• Parkinson's disease
• dementia
• stroke
• other conditions that affect the brain, nerves and muscles
• cancer, especially head and neck cancers
• cancer treatment, such as surgery and radiotherapy
• some medication
• other conditions or illnesses such as reflux, thrush infections, inflammation, food pipe (oesophageal) ulcers or stomach ulcers
• older age, as people's muscles get weaker.

If someone has difficulty swallowing, there's a risk that food and drink can go into their airway or lungs – this is called aspiration. This can cause a chest infection called aspiration pneumonia, which can be serious and sometimes leads to death.

Signs of difficulty swallowing

Check the patient is swallowing safely. Signs they may have difficulty swallowing include:

• coughing or choking when eating or drinking
• bringing food back up through the mouth or nose
• drooling of saliva
• being unable to chew food properly
• pain when swallowing
• taking a long time to eat or drink
• holding food in their cheeks
• feeling that food is stuck in their throat or chest
• a wet or gurgly sounding voice
• weight loss (however, this is common in patients receiving end of life care)
• dehydration
• repeated chest infections.

Managing difficulty swallowing

If you suspect the patient has difficulty swallowing, contact their GP, district nurse or specialist nurse to arrange an assessment with a speech and language therapist.

Based on the assessment, the speech and language therapist will make recommendations for their eating and drinking. In some specific circumstances they may advise giving artificial nutrition and hydration (ANH).

Recommendations can include the following:

• Providing a diet with soft foods.
• Thickening fluids for drinking.
• Sitting up for all meals, snacks and drinks.
• Trying smaller amounts of food and using a smaller spoon – experimenting to see what works best for the patient.
• Paying close attention to oral hygiene. This can include checking the mouth is clear after meals, and cleaning the teeth and mouth at least twice a day.
• Changing oral medications to other routes such as injections, patches or a syringe driver (sometimes called a syringe pump).

Follow the recommendations in the care plan and tell the patient's GP, district nurse or specialist nurse if you think their swallowing is getting worse.

Some patients may want to continue eating and drinking, even when they understand there's a risk of aspiration. The speech and language therapist will work with them to make sure they can enjoy eating and drinking while reducing the risk of aspiration. This should be recorded in their care plan, with details of what to do and who to contact if they choke.

Supported nutrition and hydration

Some patients will need support to make sure they get enough nutrition and hydration. This can come in different forms:

• Extra snacks, food with extra nutrients added (fortified food) or drinks such as Ensure® and Fortisip®.
• Enteral nutrition – delivering artificial liquid feed directly into the gut through a tube.
• Parenteral nutrition – delivering artificial liquid feed into the bloodstream intravenously (IV).

It's important to know that these things are not suitable for everyone and often are not beneficial for people in their last days of life.

Artificial nutrition and hydration (ANH)

Enteral nutrition and parenteral nutrition are sometimes called artificial nutrition and hydration (ANH). This is also known as clinically-assisted nutrition and hydration (CANH).

The risks and benefits of ANH need to be considered for each patient based on their individual circumstances. ANH may benefit some patients who lose the ability to swallow early on in their condition, but go on to live for a long period of time. ANH has the potential to help patients live longer and have a better quality of life. But it can also add to the patient's distress, and cause complications like aspiration pneumonia and infection at the feeding tube site.

It's rarely appropriate to start ANH in the last few days of life. Patients and the people close to them often ask whether they can have artificial hydration and nutrition. For some conditions, this is an option. But for other conditions, and when patients are in their last days, there's no evidence that it helps them to live longer or improves their quality of life.

Enteral nutrition

Enteral nutrition involves inserting a tube into the gut and liquid nutrition is given through this tube. There are different types of tubes which can be used. These include:

• A nasogastric (NG) tube, which is inserted through the nose and into the stomach.
• Gastrostomy tubes, which are inserted into the stomach through a cut in the abdomen. These include percutaneous endoscopic gastrostomy (PEG) and radiologically inserted gastrostomy (RIG) tubes.
• Jejunostomy tubes, which are inserted into the jejunum (the middle part of the small intestine) through a small cut in the abdomen.

Find out which feeding tube the patient has, as it will impact on how you look after them. Speak to your manager about any training you may need. The patient or their carer might also manage the tube feeding themselves.

The myTube website has videos for people with MND who are considering enteral feeding. It also has information for people with other illnesses and their family, friends and carers.

Watch and share videos on enteral feeding.

Parenteral nutrition

Parenteral nutrition is rarely used at a patient's home but might be used in hospices, hospitals or care homes. This is when liquid nutrition is given intravenously (IV). It's sometimes called TPN (total parenteral nutrition) when this is the patient's only source of nutrition.

It's set up by a healthcare professional who has had specialist training. Patients having parenteral nutrition at home are monitored regularly with clinical observations and blood tests. The patient or their carer may be given training and information on managing the feeding tube and contact details of specialist healthcare professionals.

Subcutaneous fluids

When someone is unable to drink fluids by mouth (orally) and they become dehydrated, they might be prescribed subcutaneous fluids. This is when fluids are given through a drip into a small needle or cannula under the patient's skin.

Subcutaneous fluids are a medical treatment so they're prescribed by a doctor or specialist nurse.

At the end of life, there's no clear evidence to show that subcutaneous fluids helps someone live longer or improves their quality of life. Risks and benefits should be considered for each patient based on their individual circumstances.

Last days of life

Patients usually become less interested in food in the last days of life. This is normal and is not usually distressing for the person who is dying. But it can be very difficult for those around them.

Providing food for people can be a way of showing that we care for them. Food may also form part of someone's spiritual, religious or cultural practices. Those around the person who's dying, often want to continue providing food and do not like to think they're hungry or thirsty.

Family and friends often ask if the person can have artificial hydration and nutrition, for example tube feeding or subcutaneous fluids. For some conditions, this is an option. But for other conditions, and often when people are in their last days of life, there is no evidence that it helps people to live longer or improves their quality of life.

Reassure those around the patient that if they no longer want to eat, they won't feel hungry, and food and drink may make them uncomfortable. Explain the reasons behind the patient's care and any changes in their treatment. The aim of eating and drinking during this time should be about comfort and quality of life, rather than gaining weight or achieving specific nutritional goals. This can be a difficult conversation. Ask for help from an experienced colleague if you do not feel comfortable or confident.

Those close to the patient may be able to provide mouth care if they wish to. This could include helping them to take small sips of water or placing ice chips in their mouth.

Read more about caring for patients in the last hours and days of life.