Physical signs of dying

Most people will experience physical changes as their long-term condition progresses. This can include:  

• feeling more out of breath
• chest pain
• reduced lung function
• having more flare-ups
• loss of appetite and losing weight
• feeling anxious and depressed
• difficulty sleeping.

Ask your healthcare professional about specific symptoms you might experience with your condition. 

End of life refers to the last weeks and days before death. It's not always easy to know when it will happen. Everyone’s experience of end of life with a long-term lung condition is different.

As you get closer to the end of life, you might experience different symptoms. This can include: 

• pain
• feeling sleepy and becoming unconscious
• losing interest in talking to family and friends
• feeling confused (delirious)
• changes in your breathing pattern
• difficulty swallowing
• changes in your skin - it may become moist, cooler, and paler
• fluid in the lungs rattling when you breathe (chest secretions). 

Just in case’ medicines

You may have been prescribed ‘just in case’ medicines earlier in your diagnosis. They are prescribed in advance for someone who may need immediate help with distressing symptoms like pain or breathlessness.

They are usually given by a district nurse who can be called out if the person becomes unwell. They are given as injections.

Pain

You're not alone in worrying about your loved one being in pain when they die. It's important to know that most people do not die in pain. If they are in pain, it can be well controlled using the right medicines.

There are different types of pain relief someone might get, including:

• paracetamol
• codeine
• morphine.

Your loved one will be given medicines in a way that causes the least amount of discomfort, pain, or stress.

Breathlessness

It's normal for someone’s breathing pattern to change when dying. It might stop and start and there may be longer pauses between breaths.

They might sound different when they breathe too, for example you might hear a rattling sound. This is nothing to worry about. It's fluid building up in the lungs that they can't cough up, called chest secretions.

Painkillers can be used to treat breathlessness at the end of life. For example, they might be given morphine.

Oxygen levels 

Oxygen therapy can sometimes cause soreness in the nose from the oxygen tubes blowing in your airways. If this happens nearer the end of life, your healthcare professional may decide it’s safe to remove oxygen therapy, even if oxygen levels are low.

Oxygen therapy will only be removed if it is causing distress, and to help relieve discomfort in the person who is dying.

Eating and drinking  

You may have a loss of appetite, or you may find it difficult to eat and drink. Some people might refuse to eat or drink at the end of life. That's normal, and if you’re caring for someone you don't need to force them.

If the person who is dying does want to eat or drink, try giving them small sips of water, and small portions of food. Higher calorie snacks can include cakes, biscuits, and cheese. Softer foods like ice cream and yoghurt will be easier to swallow too. 

Choose nourishing drinks such as full-fat milk, hot chocolate, smoothies, fruit juice and fortified soups.

Using the toilet

You might be unable to use a toilet in the final weeks and days. You could use a commode (portable toilet) or you might need to use pads and wipes.

Some people use a catheter (a small tube) to pee. Talk to your doctor or nurse about what is best for you.

Marie Curie has more information about helping someone to use the toilet.

If your loved one dies in hospital, a care home, or a hospice, the staff will let you know what to do.

If your loved one dies at home, when you're ready, you should inform their GP and register the death. You can then contact the funeral director to start planning the funeral.

Tell Us Once is a service that lets you report a death in England, Scotland and Wales to most government organisations in one go. The registrar will give you details when you register a death. The service is not available in Northern Ireland, however the nidirect website has more information about what to do when someone dies. 

Marie Curie has more emotional support and practical information about what to do when someone dies. They also have a free booklet, When someone dies, which you can download or order on their website.