Eating and drinking problems

People living with a terminal illness may experience problems with eating and drinking. This could include a loss of appetite, or finding that food tastes different than before. On this page, we talk about ways to manage these problems, who can help, and assisted eating and drinking.

Someone’s illness or treatment might cause changes that affect eating and drinking, including:

Eating and drinking can be a big part of life for many people. Food and drink can be enjoyable and comforting, and sharing meals is a way to connect with people.

It can be upsetting to no longer be able to eat and drink in the same way, or to see someone experiencing this. It can also cause problems such as weight loss and feeling very tired.

For someone that has appetite loss or changes in taste, the following tips might help:

Speak to your doctor or nurse if you’re worried about loss of appetite or any other changes to your eating and drinking. They might give you medicines to help.

They may also arrange for you to see a speech and language therapist. Speech and language therapists can help if you’re having difficulty swallowing, or other symptoms which make it hard to eat.

You may also be referred to a dietitian. They can help you plan your diet, taking into account what you like and do not like. They can also help by suggesting changes to the texture of your meals, depending on your symptoms. Your could also search for a dietician yourself.

If you’re feeling anxious or depressed, speak to someone you trust. This could be your nurse, doctor, counsellor or psychologist, if you have one. They can help you to talk about your thoughts and feelings, including any worries you have about eating and drinking.

If you cannot go shopping or make your own meals, you could ask someone close to you to help, such as a friend or family member. You can also get shopping or meals delivered to your home. Your local council might do this for you. They might also be able to help with other types of social care and support.

Some people will need extra help with eating and drinking. For example, you might need supplements or pieces of equipment to make sure you get enough to eat and drink. There are lots of options that might help you.

Extra snacks or special drinks that have lots of energy (calories). They can help you get plenty of nutrition without having to eat big portions. If you need them, your doctor can prescribe them for you.

Enteral feeding is sometimes called tube feeding. It is when you are given a special type of liquid food directly into your stomach through a tube. This can be done in two different ways:

You can have enteral feeding at home. A nurse or another health professional will visit you to make sure it is working properly. You will need extra equipment and you or your carer will need to be trained to use it.

Tube feeding is not suitable for everyone. Sometimes the benefits of tube feeding do not outweigh the risks. But it can be helpful for people with eating and drinking problems that won’t get better with any other treatment.

The myTube website has videos for people with motor neurone disease who are thinking about having enteral feeding. It could be useful for people with other illnesses too.

Parenteral feeding is when a special type of liquid food is given through a vein (intravenously). You will usually have one tube inserted into a vein. This tube can then be used for liquid food, fluids and medicines. You will need a short procedure for this, but you won’t need an anaesthetic. Parenteral feeding is rarely used at a person’s home but might be used in a hospice, hospitals or care homes.

Subcutaneous fluids are fluids are given through a drip into a small needle or cannula under your skin. This is sometimes used when someone cannot drink to keep themselves hydrated.

It can be hard to decide if you want to have enteral or parenteral feeding. Try to get as much information as you can before you decide. If you’re not sure or you have questions about it, talk to your doctor or nurse.

You might be less able to make decisions about your care over time. Some people find it helpful to think about what kind of support they would like ahead of time. Making your wishes known in advance can help to make sure you get the care and treatment you want. For example, you might want to say if you would want tube feeding or not.

It’s very common for people become less interested in food in the last few weeks and days of their life. This is normal. As the body becomes weaker and slows down, people need less energy. It’s normal to find it harder to eat by yourself as well.

This can be difficult to come to terms with. You might feel upset or worried if you’re cannot or do not want to eat. It might also be difficult for your family or friends. Providing food for our loved ones is a big part of showing that we care for them. Family and friends often want to continue doing this and worry that their loved one might be hungry or thirsty.

There are ways you can support someone that’s living with a terminal illness and experiencing changes to eating and drinking:

Family and friends often ask if their loved one can have artificial hydration and nutrition. For example, tube feeding or fluids. For some people, this is an option. But for other people it is not. This might be because of their condition, or because it might not help them live longer or make them more comfortable.

You could speak to a doctor or nurse about this. They will be able to give you advice about your loved one’s specific situation.