Eating well with pulmonary fibrosis: end of life

Eating well at the end of life with pulmonary fibrosis (PF) is often less about nutrition and more about comfort, dignity, and enjoyment. Small, thoughtful choices around food and drink can help to ease symptoms, bring pleasure, and support both you and your loved ones during this stage.

This information is suitable for everyone affected by pulmonary fibrosis (PF). However, it speaks directly to carers, friends and family who are supporting someone with PF at the end of their life. This is because they may need to act on much of the practical information we give. We understand that some people reading this page may have PF and be looking for information on what to expect at the end of life.

This is general information, not medical advice. Please speak to your healthcare team about what may be suitable for you or your loved one.

Understanding changes in eating and drinking at the end of life

When someone with PF reaches the end of their life, you may notice their eating and drinking habits change. They may lose interest in food and drink as their body naturally needs less. Some people feel very breathless, tired or have trouble swallowing. These changes are a natural part of the process, but we know they can be upsetting and worrying for family and friends.

Towards the end of life:

your loved one's loss of appetite is natural - their body needs less energy now
their digestion has slowed down, so eating too much might make them uncomfortable
foods they once enjoyed might not appeal to them anymore
some weight loss will happen naturally

Everyone is different, and each person will have a different response and need different support. Some people may still have an interest in food. Others may find their PF symptoms make it difficult to keep enjoying eating. The information below is just a guide of what could be helpful to understand if you're supporting someone with PF at the end of their life.

Common questions you might have

As these changes happen to your loved one, you might be wondering:

'Should I try to get them to eat more?
'What can I do about their weight loss?'
'They're too tired to eat or drink - how can I help?'
'Is it normal for them to refuse food?'
'How can I make sure they stay hydrated?'

These are concerns we often hear from carers, family and friends. It's completely natural to worry about these changes. The information on this page is designed to help answer some common questions.

Practical ways to help

Focus on enjoyment rather than nutrition

At this stage, comfort may be more important than getting a 'proper' meal. You might try:

offering small amounts of foods your loved one likes when they feel able to eat
letting them choose when and what they'd like to eat and drink
not worrying if they only want simple things. For example, a taste of honey, a sip of hot chocolate, or a small piece of fruit might bring more comfort than a full meal.

A common worry‍

What if they only eat one mouthful a day?

This is normal. Even small amounts can provide comfort. While you can gently encourage eating and drinking, trying to make someone eat more can cause them discomfort.

Make eating easier

Some common ways that may make eating easier for someone in the final stages of life include:

try soft, smooth foods without lumps. These could include yogurt, mousse, puddings, mashed potatoes or scrambled eggs.
some people might prefer cold foods such as ice cream, jelly or smooth fruit drinks. These can be easier to eat than hot meals.
some people may find drinking easier than eating. Having nourishing fluids like soup, smoothies and hot or cold milk-based drinks may be helpful.
allow plenty of time for meals
help them stay upright during and after eating
try very small portions. A spoonful of peanut butter, a piece of cheese, or a sip of meal replacement drink can provide energy without being overwhelming.
show and explain to them what food you’re offering so they know what they’re eating
watch closely for signs that they’ve finished eating or drinking. This could be turning their head away or biting the cutlery.

A common worry

What if chewing and swallowing become difficult?

Common signs that your loved one is finding chewing and swallowing difficult include:

coughing while eating
choking on food or drinks regularly
gurgling or crackling sounds while eating
the feeling that food is stuck in their throat or chest area
food coming back up after eating, either through the mouth or sometimes the nose

If you notice any of these signs, let their medical team know. A speech and language therapist may be able to advise on making eating and drinking safer and more comfortable.

Making meal times easier when breathing is difficult

Here are some gentle ways to help:

have mealtimes when your loved one has more energy
take it slowly with small amounts, and allow them to rest regularly
make sure their mouth is clean and moist
help them find a comfortable sitting position
if your loved one uses oxygen, speak to their oxygen team about how to manage eating and drinking. This can be tricky if using an oxygen mask, so they may recommend nasal cannula during mealtimes. For an oxygen mask, you may be able to support your loved one by lifting the mask for a short time while the fork or spoon goes in their mouth. Leave plenty of time between mouthfuls to allow them to recover

A common worry

Should I wake them to eat?

Check with their healthcare team. It's often best to let them sleep, but each person is different.

Respect cultural and family traditions

Food can be an important part of family life and cultural identity. If this is important to your loved one, you might like to try:

offering tiny amounts of meaningful family dishes
adapting traditional recipes to make them easier to eat. For example, blending lentils into dishes so there are no lumps.
including important food traditions in ways that feel comfortable. This might be continuing family meals with your loved one present, even if they're unable to eat much. They may still be able to experience the occasion through smell or sound instead.

Help with dry mouth and drinking

A dry mouth is common at the end of someone's life. This is a natural part of the later stages. It may be recommended that you focus on keeping your loved one's mouth comfortable rather than trying to get them to drink more. Their healthcare team can advise on mouth care suitable for them. Some people find it helpful to:

offer small sips of their favourite drinks
try moist foods like jelly or smooth soups
try ice chips or ice lollies, as these can be soothing
keep their lips and mouth comfortable with lip balm, a damp cloth or a cotton swab soaked in water. Don't use petroleum-based balms like Vaseline® if they're using oxygen. This is a fire hazard.
ask their healthcare team about artificial saliva

A common worry

‍What if they stop drinking?

This is a natural part of the end of someone's life. In the next section, read more about what to do when eating and drinking may stop.

When eating stops

In someone's final days, it's natural that they stop eating and drinking. We know this can be very difficult to see, but remember that your loved one's body is naturally changing and doesn't need food or drink anymore.

Common worries we hear

'Should I be worried about them stopping eating?'

This is one of the natural changes that happen. If their healthcare team has confirmed that your loved one is at the end of their life, focusing on comfort is the right thing to do.

'Are they hungry?'

The body changes how it processes hunger at this stage, so your loved one may not experience hunger in the same way.

'How can I still help?'

Speak to your loved one's healthcare team about how to best keep them comfortable and support their choices. This may include things like mouth care.

Remember, your loved one's healthcare team is there if you have concerns.

Tube feeding

It's natural to want to help with nutrition in any way possible. However, tube feeding and drips generally aren’t suitable for people with PF at the end of their life. Often, gentle mouth care and comfort are more beneficial at this stage. Your loved one's healthcare team will be there to guide you if you have any questions about this.

Taking care of yourself

Supporting someone through these changes can be emotionally and physically tiring. Remember to:

be kind to yourself - you're doing your best
ask your healthcare team for support when you need it
take breaks when you can
talk to others who understand

Offering food is one way we show love, but accepting these natural changes is equally loving. Your presence, gentle care and understanding matter most right now.

Further information and support

Talk to someone

Remember, you're not alone in this. Your loved one's healthcare team and local support services are there to help you both. They can answer any questions about eating or drinking, or other symptoms your loved one may be experiencing.

The APF Support Line is here for anyone affected by pulmonary fibrosis - whether you have the condition yourself, or you're a carer, friend or family member. If you need support or have questions, at any stage of the PF journey, please call us on 01223 785725.

We also have information and support for family, friends, carers, including people who are bereaved.