Difficulty swallowing

Difficulty swallowing is a common problem for people living with a terminal illness. It can affect your ability to eat, drink and take medication, and this may be worrying for you, your family and your friends. However, there are things that your healthcare team can do to help you, and there are also things you can do yourself.

On this page:

What is difficulty swallowing?

Difficulty swallowing is when you having problems taking food, drink, medication or saliva from your mouth, down your throat and into your stomach. Swallowing is something that we normally do without thinking, but it’s quite a complex process and many things can affect it.

Difficulties with swallowing are called dysphagia (pronounced ‘dis-fey-jee-uh’). This might be a new problem for you, or it might be something you’ve had for a while. Swallowing problems can happen gradually, so you might not have realised you were having difficulty straight away.

Swallowing problems are different for everyone. They might get better or worse over time. For some people, swallowing problems can get better or be treated. If this isn't possible, there might be things that can help you cope with swallowing difficulties and reduce the risk of having other problems.

What are the signs and symptoms?

Symptoms of swallowing problems include:

• coughing or spluttering, particularly when you eat or drink
• choking
• feeling like food is stuck in your throat
• having more saliva in your mouth, which can cause drooling or problems talking
• bringing food back up through your mouth or nose.

If you think you have trouble swallowing, or have any of these symptoms, speak to your health and social care professionals as soon as possible.

What problems can it cause?

Finding it hard to swallow can cause a range of problems and you might become nervous about eating, drinking or taking medication. Your health and social care professionals can help you with any problems you have and talk to you about your concerns.

Your difficulties with swallowing might stop you from being able to swallow at all, or you might have difficulty with certain food, drink or medication.

Eating and drinking less

Some people find that they eat and drink less, which can cause weight loss or dehydration. You might be malnourished – this is when you're not getting enough nutrients from your food. This can mean that your body is not able to repair damage, fight infection and have energy.

Choking

Swallowing problems can cause choking, where food blocks your airways. This can be frightening, especially if you're unable to clear your airways by coughing. It can stop you breathing and be very serious. If you feel like you are choking, call for help or try to alert someone immediately. If you can, keep calm and try to cough up whatever is stuck. If you're worried about choking, you could ask someone to be with you while you eat if possible. If you have a medical alert button, you could keep it nearby while you eat.

Lung infection (aspiration pneumonia)

Swallowing problems can also cause particles of food or drink to go into your lungs (sometimes called 'aspiration'). This can sometimes cause pneumonia (a severe chest lunginfection), which can be serious and difficult to treat.

Worries about swallowing

You may feel nervous about trying to swallow and may feel upset or worried that you're now finding it difficult. Problems eating and drinking may also stop you from enjoying meals and socialising with family and friends. This can have a big impact on how you feel about life in general and might make you feel low (depressed), worried or stressed.

What causes difficulty swallowing?

Many things can cause difficulty swallowing when you have a terminal illness, including:

• stroke
• motor neurone disease (MND)
• dementia
• Parkinson's disease
• multiple sclerosis (MS)
• other conditions that affect the brain, nerves and muscles
• cancer , especially cancer in the head, mouth, neck, throat or oesophagus (the tube between your mouth and stomach)
• cancer treatment such as surgery and radiotherapy 
• some medication
• other health conditions or illnesses, such as reflux, thrush infection, inflammation, oesophageal ulcers and stomach ulcers
• older age, as people's muscles get weaker.

What can help with difficulty swallowing?

Practical tips

There are many things that you can do to help with your eating and drinking:

• Sit in an upright position when you eat or drink if possible – this can make it easier to swallow.
• Keep your mouth clean – this can make it more comfortable to chew and less likely that you'll get an infection.
• Have small, regular meals rather than three large meals a day.
• Do not rush when you're eating or drinking – allow yourself plenty of time.
• Chew your food thoroughly before you swallow.
• Choose food and drink that you like.
• Tell your health and social care professionals what's important to you – for example, whether you want to try to eat and drink by yourself if possible.
• Ask for help whenever you need support to eat, drink or take medication.

Your health and social care professionals can give you advice and talk to you about what might be best for you.

Mouth care

Mouth dryness, sore mouth, ulcers, bad breath, infections, changes in taste and drooling are all common problems for people living with a terminal illness. Talk to your doctor or nurse if you have any new symptoms or any symptoms that get worse.

There are lots of things that you can do to keep your mouth clean and comfortable – find out more about mouth problems and mouth care.

How your health and social care professionals can help

Talk to your health and social care professionals if you have problems with swallowing or if your symptoms change. If you live at home or in a care home, make sure your GP knows about any problems you have.

Your health and social care professionals can look at the problems you're having and talk with you about what they can do to help. They will look at what could be causing your swallowing difficulties or making them worse. They may recommend things that could help, such as stopping or reducing medication. They might involve other professionals in your care, such as a speech and language therapist (SALT) or a dietitian. These professionals can do things to help you, including teaching you exercises to help you swallow more safely or recommending certain food or drink.

Your health and social care professionals may be able to help you to eat and drink during mealtimes if you need this support.

They can also talk with you about what you want from your future care – for example, if your ability to swallow gets worse. This is sometimes called advance care planning or, in Scotland, anticipatory care planning. Your wishes can then be followed if you are not able to make decisions in the future.

Choosing food and drink

Your health and social care professionals might recommend certain kinds of food or drink to make it easier for you to swallow them safely. For example, soft foods chopped into small pieces may be easier to swallow than dry foods or hard foods in large pieces. Thicker liquids may be easier for you to swallow than thin liquids (eg water). Your health and social care professionals might also change the thickness (consistency) of your food and drink using liquids, gels or powders.

Your health and social care professionals might also recommend using high calorie drinks, so that you don't have to eat as much.

If your family or friends want to make or bring you food or drink, they should check the advice you've been given about what might be best for you.

Different thicknesses of food and drink

The diagram below shows the different thickness levels of food and drink – this is the measurement system that your health and social care professionals should use to work out what you should be eating and drinking. They can measure the thickness level of food and drink by looking at how easily it flows – for example, whether it can be sucked through a straw or how quickly it flows through a syringe.

Your health and social care professionals will usually organise this for you, but it might be useful for you to understand what they're doing. They can tell you what levels of food and drink are right for you and explain what this means. Anyone preparing your food or drink should follow this guide and it may be written in your care plan, if you have one.

If your health and social care professionals use other words to describe these levels, ask them what they mean.

You can find more information about the different levels of foods on the International Dysphagia Diet Standardisation Initiative website.  

Foods

Foods are measured in levels 3-7. If you're unable to swallow regular food (level 7), your health and social care professionals will look at what level of food might be best for you. If you're in a hospital or hospice, they should either give you food that is already the right level for you, or they will change food to make it suitable. For example, they may chop it up into smaller pieces or add liquid to make it softer.

Drinks

Drinks are measured in levels 0-4. If you're unable to swallow a thinner (lower level) drink, your health and social care professionals might suggest having a thicker (higher level) drink. They might use thickening powder or gel to make this, or there may be drinks available that already have the right thickness for you.

Choosing food and drink safely

Make sure that you:

• follow the advice from your health and social care professionals
• follow any instructions about how a product (eg thickening gel) should be stored and used
• talk to your health and social care professionals before using any new products
• tell your health and social care professionals if things change and you think you might need food or drink of a different thickness level.

Getting extra fluids and food

Patients, or their family and friends, often ask if they can have food and drink through a tube or drip. This is sometimes called 'clinically assisted nutrition and hydration' or 'artificial nutrition and hydration'.

This can help some people – for example, if you haves a long-term condition such as dementia, motor neurone disease (MND) or cancer and you find it difficult to eat enough food. But it is not always a suitable option. For example, it may not be suitable in the last days of someone's life if it's unlikely to make them feel better or live longer. Talk to your health and social care professionals about this or find out more about stopping eating and drinking at the end of life.

Taking medication

If you need to take medication but can't swallow tablets, there may be other options. You may be able to have the same medication as a liquid, injection or patch rather than tablets. Or your health and social care professionals may suggest you have a patch or a syringe driver. A syringe driver (sometimes called a 'syringe pump') is a small, battery-powered pump that delivers medication at a constant rate through a small tube under your skin. 

Some people crush or melt tablets to make them easier to swallow. But this could affect whether they work properly. If you want to do this, check with your pharmacist or health and social care professionals first.

How your hospice can help

Your local hospice may be able to help you with eating and drinking, whether you are staying in the hospice, at home or in a care home. Speak to your local hospice or your GP about getting support. You can find your local hospice on the at Hospice UK  .

If you're staying at a Marie Curie hospice

Our staff are here to help you to be as comfortable as possible and answer any questions or concerns you may have. There are some things we'll do as part of your general care and support:

• When you arrive at the hospice, we'll look at your ability to eat and drink, and what support you might need.
• We'll talk to you about what food and drink you like and do not like, as well as any cultural or religious food requirements you have .If you need support eating, drinking or taking medicines, our staff will help you with this or talk to your family and friends about how they can help you.
• We can help you choose food, drink and medication that you can swallow more easily.
• If you need more support, we might involve other professionals in your care, such as a speech and language therapist (SALT) or a dietitian.
• If your family and friends want to bring you food and drink, ask them to check what might be suitable with your health and social care professionals.
• If you're leaving the hospice and have difficulty swallowing, ask your health and social care professionals about what can be put in place to support you.
• If you need any support to eat or drink when you're in the hospice, use your call bell.

If you're staying in a different hospice or a hospital, they might have similar care in place. You can ask them what to expect from their care and how they can help you with eating and drinking.

Eating and drinking at the end of life

During the last days or hours of life, it's normal for people to eat and drink less than usual or not at all . Find out more information about stopping eating and drinking at the end of life.