Pain in terminal illness
Pain is common for people living with a terminal illness. It affects everyone in different ways. With the right treatment and support, pain can usually be managed.
We have more information for family and friends on our page, pain when someone is dying.
On this page:
What is pain?
Pain is a physical sensation. It happens when damaged areas of your body send signals to your brain. There are different types of pain. For example, your pain might be constant, or you might only be in pain occasionally. It might also affect different parts of your body. See types of pain below.
Some things that are not physical can affect how you experience pain. Feeling stressed, anxious, worried, tired, or alone can all make the pain feel worse.
Many people living with a terminal illness experience pain, but not everyone does. It could be caused by your illness, or by a treatment or operation you've had. It could also be caused by a condition you've had for a while, such as arthritis.
How pain affects you
Pain can affect every aspect of your life. It can stop you from moving around and doing day to day activities. It can also affect your sleep and concentration.
Pain can have a big impact on your emotions, mood and thoughts too. People often tells us that pain affects their confidence, optimism, enjoyment of life and relationships with other people.
If you’re in pain
You don't have to put up with pain. There are lots of treatments available. Tell your doctor or nurse if you're in pain. They will work with you to find the best treatment for you.
Pain can usually be managed with the right treatment and support. In fact, it's rare that someone has pain that cannot be managed. There may also be things you can do yourself to help manage your pain.
Read more about pain relief and treatments.
Palliative care and pain
Palliative care helps people living with a terminal illness, and their friends and relatives, have a good quality of life. Managing pain and other symptoms is an important part of this.
Palliative care also helps with a person’s psychological, social and spiritual needs. This is because your pain can be made worse by how you’re feeling mentally and emotionally. Fatigue, anxiety, stress and loneliness can all make your pain worse.
Pain assessment
Your doctor or specialist nurse will talk to you about your pain so they can find the right treatment for you. This might involve asking you questions and doing a physical examination.
Sometimes they might need to arrange tests to find out what’s causing the pain. They might do a blood test to help them decide what medicines you can have.
Questions your doctor or nurse might ask
- Where is the pain in your body?
- Does the pain travel to other parts of your body?
- What does the pain feel like? For example:
- tingling
- burning
- aching
- tender to touch
- dull
- sharp
- shooting
- throbbing
- Can you rate the pain on a scale of 0 to 10, with 0 being no pain and 10 being the worst pain you can imagine?
- How often do you get the pain?
- Does anything make the pain better, such as resting or pain medicines?
- Does anything make the worse, such as moving, eating, or taking a deep breath?
- How is the pain affecting your life?
Talking about your pain
Everyone feels pain in their own way and everyone responds to it differently. This means you are in the best position to say what your pain is like, not those around you.
Try to describe any pain you’re experiencing to your doctor or nurse. This can be difficult, but it helps them find out what’s causing your pain and what the best treatment will be.
Keeping a pain diary
Keeping a pain diary can be helpful. A pain diary is when you write down when you feel pain, what it feels like and what you were doing at the time. You can then use this when you talk to your doctor or nurse so they know what you’re feeling.
You can use pen and paper or type it into your smartphone or tablet. Macmillan has a pain diary template you can print out and use.
It might be useful to score your pain from 0 to 10, with 0 being no pain and 10 being the worst pain you can imagine.
Types of pain
There are lots of different types of pain. You might hear your medical team using some of these words to describe pain. It can help to understand what they mean:
- Acute pain is pain that lasts for a short time, normally lasts less than six months. It often comes on suddenly and is caused by damage to your body such as an injury or a tumour.
- Chronic pain is pain that lasts a long time. It can be constant or it can come and go. It is treated differently to acute pain.
- Neuropathic or nerve pain is caused by damage to the nerves themselves. It often feels like stabbing, burning, sharp pain or tingling.
- Visceral pain occurs when internal organs are damaged or swollen. This includes colic, which feels like waves of squeezing pain in your tummy. The pain comes from the bowel, bladder or gall bladder.
- Bone pain can happen if there is damage to bones, including bone cancer. It often feels like an intense aching pain.
- Breakthrough pain is when you have pain even though you’re taking regular painkillers. The pain ‘breaks through’ the painkillers. It might be brought on by doing something like eating, moving, sneezing or coughing. This is sometimes called incident pain. It may also mean that your painkillers are wearing off.
- Referred pain is when you feel pain in one part of your body even though the damage is happening to another part of body.
- Total pain is the term for all the pain you have. It includes your physical pain and your emotional and spiritual pain. It also includes any struggles you have with practical issues or worries about coping with your illness.
If someone has difficulty communicating
If you’re caring for someone who has trouble communicating, it can be hard to know if they’re in pain or what type of pain they have. Ask the nurse or doctor for other ways to tell if they’re in pain. They might suggest a visual chart or picture cards to help the person express what their pain is like.
If the person cannot communicate at all, look for signs that they are in pain. These include:
- frowning
- changes in their mood
- changes in their routine such as refusing food
- changes in their posture
- agitation or distress
- not being able to concentrate
- becoming withdrawn or not making eye contact
- changes in their breathing.
If you notice any of these things or you're worried that your friend or relative is in pain, speak to a member of their healthcare team.
External websites
NHS UK – medicines A-Z
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About this information
This information is not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
