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Pain in terminal illness

Managing pain is an important part of palliative care. Palliative care aims to help people living with a terminal illness, and their friends and relatives, achieve the best quality of life. As well as managing pain and other physical symptoms, it will also help with any psychological, social or spiritual needs. This is because we know that pain can be made worse by how you’re feeling mentally and emotionally, as well as fatigue, anxiety, stress and loneliness. However, this doesn’t mean the pain is all in the mind.

Pain management is about controlling your pain so you aren’t suffering unnecessarily. However, managing pain doesn’t always mean that you’ll be completely free from pain. Some people find they prefer to have some discomfort rather than have high doses of painkillers, in case they become sleepy and unable to communicate.

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If you’re worried about side effects

Some people worry about experiencing unpleasant side effects when they’re taking pain medications, like loss of control. They can be particularly worried about morphine or other strong painkillers. In fact, morphine is a very safe drug when it’s prescribed and taken correctly. Morphine and other strong pain killers may even be taken for a long time, gradually increased to higher doses. Being given morphine doesn’t mean someone is approaching the end of their life.

You or your carer might also be worried about the risk of addiction, particularly if you’re receiving medication through a syringe driver or regularly taking other strong painkillers. This isn’t something to worry about as it’s rarely an issue for people needing pain relief for terminal illness. Syringe drivers can be the best way of making someone comfortable and managing pain. You can still move around while wearing one, too.

Talking about your pain

Everyone feels pain in their own way and how someone responds to pain is personal. This means the person in pain is in the best position to say what the pain is like, rather than those around them.

Try to describe any pain you’re experiencing to your doctor or nurse. This can be difficult, but it helps them decide what medication you might need.

Talking to your doctor about what you’re feeling and what you want from your treatment will help them make the right medication plan for you.

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What kind of pain?

There are different degrees and types of pain, so try to describe the pain to your doctor or nurse. This can be difficult, but it helps them assess what medication you might need.

Questions your nurse or doctor might ask:

  • Where is the pain in your body?
  • Where does the pain travel to?
  • What kind of pain is it – does it come and go, is it sharp, is it throbbing, is it a dull ache, does the area feel as if it’s burning, or is it tender to touch?
  • Can you rate your pain on a scale of 0 to 10, with 10 being the worst pain and 0 free from pain?
  • How often and when do you get the pain – after meals, early in the morning, at night?
  • What aggravates the pain – movement, eating, deep breathing?
  • What helps the pain – medication, resting?
  • How is it affecting your life?
We had lots of conversations with the doctor about pain relief, and what to try, and we understood what was going on. 
Linda, carer/relative

Information for carers: helping someone communicate

If you’re caring for someone who has trouble communicating, ask the nurse or doctor for other ways to tell if they’re in pain. They might suggest a visual chart or picture cards if the person can’t speak. If they can’t communicate at all, there are several signs to look out for, including:

  • high pulse
  • changes in breathing
  • changes in mood
  • agitation or increased temper
  • lack of concentration
  • withdrawal or refusal to make eye contact

If you notice any of these things or are worried that your friend or relative is in pain, speak to a member of the healthcare team.

How pain may be described

Doctors and nurses will describe your pain as acute, chronic, neuropathic, somatic, visceral or breakthrough pain.

  • Acute pain usually happens suddenly. It can happen regularly or when you do something in particular, like move in a certain way. It can be sudden and come in spasms or waves.
  • Chronic pain is pain that lasts a long time. It can be constant or go away and come back again.
  • Neuropathic or nerve pain may be experienced in a variety of ways – as stabbing, burning, sharp pain, or tingling. It’s caused by damaged nerve endings or a trapped/irritated nerve. You might get it in a part of the body where you don’t usually feel anything, so it can feel a bit strange.
  • Somatic pain is pain that occurs in the muscles or bones. It’s caused by inflammation and causes tenderness.
  • Visceral pain occurs when the internal organs are damaged or inflamed. It includes colic.
  • Breakthrough pain is when pain happens even though you’re taking pain killers. It may happen when you do something in particular – such as eat, move, sneeze or cough. It may also mean that a dose of a drug is wearing off.

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What help can you get?

Good pain management will involve health professionals, such as doctors, nurses and physiotherapists, working with you to find the best way to help you.

This may involve you checking your own pain regularly, because you know best what your pain feels like, how it’s affecting your quality of life, and how much pain relief you need. You can talk to your doctor or nurse about the options for pain relief.

You should be able to decide on the level and type of pain management you need or want. Sometimes people prefer not to take too many drugs, and may want to try other methods of pain relief.

Your local pharmacist can give you information about when and how to take any medication you’ve been prescribed. They may also deliver medication to your home.

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You don’t have to live with pain

Always tell your Marie Curie Nurse, district nurse, or doctor about your pain, especially if it’s keeping you awake at night. There are many medications that can help you to cope with pain, from mild analgesics to strong analgesics such as morphine, which can all be administered at home. 

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External websites 

NHS Choices   – medicines A-Z

This page is for general information only. It's 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.

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