Physical changes towards the end of life

Physical changes and symptoms at the end of life depend on which organs are affected by lymphoma. General symptoms of lymphoma might also worsen. 

We have separate information about how lymphoma can lead to the end of life and about stopping active treatment towards the end of life. 

We say ‘you’ throughout, to refer to the person with lymphoma – however, we realise that you might be reading this information if someone close to you has lymphoma.

This information might be upsetting to read. Our Information and Support Team are here to support you.

On this page

Eating and drinking less 

Drowsiness and fatigue  

Changes in breathing 

Confusion and delirium 

Feeling cold

Loss of bladder and bowel control (incontinence)

Pain

Being unable to close your eyes

Eating and drinking less

Towards the end of life, your body gradually becomes less able to absorb food and turn it into energy. As this happens, you lose weight, become weaker and less able to concentrate. 

Not eating or drinking much is very common towards the end of life. This might be because of low appetite, feeling sick (nauseous) or having pain swallowing.

How can people looking after me help?

Your medical team might offer you fluids and nutrients through a drip (infusion into a vein). This can help to lessen symptoms and discomfort caused by thirst, dehydration, dry mouth and dry eyes. In some hospitals, you might be offered ice chips to suck on, artificial saliva or a mouth gel to help hydrate you. 

The people looking after you can help you stay comfortable by helping you to take sips of water. They can also protect your lips with a lip balm, or dab your mouth with a damp sponge. 

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Drowsiness and fatigue

Towards the end of life, you have less energy, and you need to rest more. You are likely to become more drowsy as time goes on. Side effects of medication, such as pain relief medicines, anti-sickness medicines (anti-emetics) and anti-anxiety tablets, can increase weakness and fatigue. 

As your energy levels lower, you might lose interest in your surroundings and the people around you. Following a conversation can be difficult.

As you spend more time sleeping, it might become difficult to wake you. In the final hours of your life, you are likely to continue to hear people around you and be able to feel their touch, but you might lose full consciousness. 

How can people looking after me help?

Providing a calm, quiet environment can be helpful. You might find it easier to see one person at a time. Some people find lower lighting helpful too. 

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Changes in breathing

If lymphoma is in your lungs or the surrounding areas, it can cause breathing difficulties. A shortage of red blood cells (anaemia) can also cause breathing changes as a result of less oxygen in your blood. Breathing then takes more effort, which can be tiring.

Changes in breathing can include:

• shallow or rapid breathing
• finding it more difficult to breathe
• noisy breathing, sometimes known as ‘rattling’.

It can also be harder to swallow or re-absorb the normal fluids in your chest or throat. This causes a build-up of fluid in your throat.

In the final days of your life, your breathing might get louder and become irregular. This can happen as your throat muscles start to relax. Although you will be unaware, it can be distressing for relatives to see and hear this change in breathing.

How can people looking after me help?

Depending on the changes in your breathing and the reasons for them, you might be offered:

• an oxygen cylinder to help you breathe more easily
• medication to help clear your throat
• morphine to help with breathlessness.

If you are at home, you might want support to position yourself more comfortably with extra pillows, or be by a window or have a fan nearby.

Charlotte Bloodworth, Lead Clinical Nurse Specialist in Haematology 

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Confusion and delirium

You might become confused as you near the end of your life. Confusion can happen for a number of reasons, including chemical imbalances in the blood, side effects of some medicines and infection. 

Delirium is the term used to describe confusion and changes in thinking that comes on suddenly – over hours or days. There are a number of possible causes, including infection, dehydration, and low blood sugar levels.

Symptoms of delirium can include:

• increased confusion
• having hallucinations (seeing or hearing something that isn’t actually there)
• feeling restless and agitated
• a change in beliefs and thinking – for example, feeling untrusting.

How can people looking after me help?

Your medical team should offer you support based on your symptoms and the causes of them. They might offer medication to help you feel calm. If you feel untrusting of the people around you, providing frequent reassurance can be helpful.

The people around you can also help by:

• talking in short, simple sentences
• having only one or two people visit you at a time
• putting a calendar and clock somewhere that you can see them
• giving you your glasses and hearing aid, if you usually wear them
• bringing in familiar things from your home that you can see, for example, photos
• playing your favourite music or sounds (such as birdsong) at a low volume.

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Feeling cold

Towards the end of your life, your heart works less efficiently. This slows down blood circulation, and you become more sensitive to cold temperatures. 

Your hands and feet might feel cold. The skin on your face, hands, feet and legs might look pale. On people with lighter skin tones, you might see slightly blue and blotchy areas. On people with darker skin tones, you might see areas of skin that look dark, or slightly purple in colour. These changes can be more visible on your cheeks, ears, lips, nose, tongue and inside of your mouth.

How can people looking after me help?

To help keep you warm, the people caring for you can give you blankets or heat pads. They could also put gloves and extra socks on you.

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Loss of bladder and bowel control (incontinence)

Most people lose control of their bladder and bowel in the final stages of life. 

As you gradually eat and drink less, your body has less waste to remove. Incontinence therefore becomes less of a problem. In the final hours of life, your kidneys stop making urine.

How can people looking after me help?

Your nurses can give you pads to keep you comfortable and to prevent your skin from irritation. Some people have a soft tube (catheter) put into their bladder.

In severe cases of diarrhoea, a rectal tube might be fitted into your back passage to take away excess waste. This is done to protect the surrounding skin from damage.

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Pain

Some people feel pain in the last weeks of life. This depends on which areas of your body are affected by lymphoma and how it affects them. 

If you can, tell the people looking after you that you are in pain. If you are too unwell to communicate, doctors and nurses should be able to tell from any signs of restlessness or discomfort. They can also get an idea by measuring your heart rate or blood pressure.

How can people looking after me help?

Morphine is the drug most often used to treat pain in cancer. However, there are lots of different palliative medications doctors and nurses can offer to help ease pain – if one type doesn’t work, they can try others. 

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Being unable to close your eyes

Towards the end of life, your muscles get weaker – you might not be able to close your eyes. Even when you are asleep, they might stay open. 

How can people looking after me help?

The people caring for you can gently close your eyes. They can use a soft, damp cloth to keep them moist and free from waste and crust. You might also be given eye drops or an ointment to reduce dryness.

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