Pain control at the end of life

Please be aware - this information is for healthcare professionals

For some people, the idea of experiencing pain at the end of their life can cause anxiety. Everyone’s experience of pain is different and some people with a terminal illness never have any pain at all. 

Pain can be caused by issues other than the condition or illness itself, such as constipation, urinary retention and breathing difficulties. It is important to rule out any causes of pain that can be treated before thinking about pain management. 

Pain is a sensory, subjective and emotional experience – pain is what the patient says it is. It is important to acknowledge the person’s pain, and try not to be dismissive about how they say they are feeling. It’s also important to be honest with the patient. You shouldn’t promise to get rid of their pain, but you can reassure them that you will do your best to help them manage it. 

Pain can be physical, psychological or a combination of both. Sometimes, psychological pain increases physical pain, and in palliative care this is often known as total pain’. 

Sometimes, a person’s physical pain may not improve until any psychological issues are addressed. For example, they may feel distressed, anxious or isolated. 

If the available treatments are not making a sufficient difference to the patient’s pain, you should refer them to the local palliative care team. 

How can I assess pain? 

After looking at the patient’s clinical notes and medications (including any over-the-counter drugs they’re taking) you may find it helpful to ask the patient, or a family member or friend, these questions: 

  • Where is the pain? Is there more than one area of pain?
  • Can you describe the pain? For example, is it an ache or a sharp, stabbing pain?
  • On a scale of one to ten, how bad is the pain? How long have you had it? When did it start?
  • Is it new or have you had it before?
  • If you’ve had it before, what has helped or made it worse?
  • Did it start gradually or come on quickly?
  • Does it start in one place and move to somewhere else?
  • Do you have any other symptoms such as vomiting, intolerance of light, needing to empty your bowels? 

Asking these questions should help you gain a better understanding of the patient’s pain. This may also help other professionals involved in their care. 

If the patient has trouble communicating, it’s important to use an alternative method to assess their pain, for example a visual chart or picture cards. 

If the patient is unable to communicate at all, there are several signs that they may be in pain that you can 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 

New or intense pain should be reported to the patient’s district nurse, specialist nurse or GP straight away. Some parts of the UK use a handover tool such as SBAR (situation, background, assessment, recommendations) to give a comprehensive handover.

If your patient is in the last few days of life, a GP can prescribe medicines in anticipation of future pain and other symptoms to avoid the dying person having to wait while medication is organised.

Your patient, or their carer, family or friends, may also like to read our information on medication and pain relief. 

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Why are so many different painkillers prescribed? 

Physical pain has several pathways and can be caused by several different physical mechanisms. This means it may require a combination of different types of painkillers. 

Although the World Health Organisation (WHO) analgesic ladder  was originally designed for pain control in cancer with opiate medications, the principle of starting with the lowest dose and increasing as required still stands. However, different types of pain may require the use of other analgesics first, or  at an earlier stage. 

There are four main groups of painkillers: 

  • Neuropathic analgesics, which act on the nerves and the nervous system causing the pain. Sometimes anti-epileptics and anti-depressants are effective in controlling this pain.
  • Opiate analgesics, such as morphine, fentanyl and oxycodone, which block opiate sensitive receptors and control the majority of different pain types.
  • Non-steroidal anti-inflammatory medications (known as NSAIDs), such as ibuprofen and naproxen, which reduce inflammation that may cause pain.
  • Adjuvant medication such as paracetamol, steroids and benzodiazepines. Paracetamol should not be underestimated as an analgesic, and can help other analgesics work more effectively. Steroids can reduce oedema and pain caused by the associated pressure. Benzodiazepines, such as diazepam and lorazepam, can relax muscles that tense up in situations of pain. 

Some or all of the pathways may be used at the same time, and there may be a period of trial and error before finding the right ones for the patient. Be aware that they may need some reassurance during this time. 

The patient may not want to have painkillers, so you may need to act as their advocate when talking to other health professionals. It is important to have open discussions with the patient and any decisions about painkillers should be made collaboratively.   

There are several routes that can be used to give analgesics: 

  • Oral, using tablets, dispersibles or syrups.
  • Sublingual (dissolving under the tongue).
  • Buccal (dissolving on the inside of the cheek).
  • Transdermal patch (slow release).
  • Subcutaneous injection (under the skin), and syringe driver (also known as pump) for continual infusion of medication. 

Some analgesics have distinct side effects, and some cause toxicity if used in excess. You may observe constipation, nausea, increase in sleepiness, hallucinations or twitching. Inform the patient’s GP or specialist nurse if this occurs. 

There are occasions when a person’s pain may increase, even if it is already being managed with analgesics. This is when the pain has surpassed the maintained level of pain control and is known as ‘breakthrough pain’. Generally, something would have been prescribed in advance for this scenario, such as oramorph liquid or oxycodone capsules or liquid. These are quicker-acting/shorter-lasting analgesics compared to the long-acting regular medication the patient may be on. They can be used ontop of the person’s regular medication. If nothing has been prescribed to help with breakthrough pain, you should contact the patient’s GP or other prescriber involved in their care. 

If you don’t feel comfortable dealing with painkillers or speaking to the patient about this, you should be honest with them and contact the district nurse or the patient’s GP. 

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Are there any non-pharmaceutical techniques I can use to alleviate pain? 

If the patient’s pain is getting in the way of their usual activities and interactions, they may be feeling lonely. You may try to address any social isolation issues by suggesting befrienders or day services. You could check whether the Marie Curie Helper service is available in the patient’s area. 

Other non-pharmaceutical techniques for managing pain include massage, repositioning the patient and heat packs. Distraction therapy, for example playing music, reading a book out loud or looking at photos, may also help. 

Listening without interruption, responding in an honest and open fashion and taking active steps to alleviate any worries or concerns may also be helpful. 

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When is pain an emergency and what do I do? 

The main emergency linked to pain is spinal cord compression. This should be considered if the patient complains of new back pain, sometimes over a number of days, that might be worse on coughing, sneezing, straining or moving. Other symptoms associated with spinal cord compression are: 

  • changes in bladder and bowel habits
  • altered sensation, particularly on both sides of the body and below the waist and in the legs. Compression can occur higher up the spinal column, but this is unusual 
  • rapid change in the patient’s ability to move
  • a history of bone metastases 

Any of these symptoms should be reported to the GP, district nurse or specialist nurse immediately. There are several other types of palliative emergency that may occur, which can be found on our page about recognising emergencies

If the patient’s pain is severe and uncontrolled despite top-up medications (especially if they have been given as an injection), this may also be considered an emergency. At this point,you should seek further clinical advice from the district nurse, specialist nurse or GP.  

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What can I do if the patient can’t take their oral medication? 

If a person is unable to swallow tablets or syrup, or if they’re vomiting, a district nurse or specialist nurse might consider a subcutaneous infusion using a syringe driver for certain medications. This is also known as syringe pump. 

Some carers, family members or friends may misunderstand what a syringe driver is for and may think it means that the person is close to dying. If you do use a syringe driver it is important to discuss this with your patient and their carer, family member or friends, and assure them that it will improve symptom management and help the patient feel more comfortable.

You may find it helpful to share our information on using syringe drivers with a patient’s family and friends.

Who else should I talk to? 

  • The specialist palliative care team
  • A district nurse
  • The patient’s GP

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Points to remember

  • Everyone’s experience of pain is different.
  • Some people do not experience pain as part of their condition at end of life.
  • Pain is what the patient says it is.
  • Physical pain can be worsened by psychological pain and distress.
  • Be aware if the patient mentions altered sensation in their legs, arms or below their waist. This could be a palliative emergency.
  • Not all pain requires medication.
  • Plan ahead and check if pain has been identified as a previous issue.
  • Try to address common concerns around the use of a syringe driver.
  • Signpost carers, family or friends to our information on medication and pain relief.

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