Pain management in palliative care
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Everyone’s experience of pain is different. Some people will feel worried and distressed by the idea of experiencing pain at the end of their life. There are painkillers and non-drug (non-pharmacological) techniques available to treat pain and most patients’ pain can be managed well. While pain is common in people living with a terminal illness, some patients won’t have any pain at all.
On this page:
Causes of pain
Pain in terminal illness can be caused by:
- the illness itself
- treatments like operations
- side effects of treatments like constipation
- other illnesses the patient may have had for a while, like arthritis.
Pain is a sensory, subjective and emotional experience – pain is what the patient says it is. It's important to acknowledge the person’s pain and not dismiss how they say they're feeling. You should be honest with the patient. Don't promise to get rid of their pain - instead, reassure them that you'll do your best to help them manage it.
Pain can be physical, psychological, or a combination of both. Psychological pain may be emotional or spiritual. Sometimes, psychological pain increases physical pain, and this is often known as “total pain”.
This does not mean that pain is all in the mind; rather that psychological factors can make it much harder to deal with. Sometimes, a patient's physical pain may not improve until psychological issues are addressed. For example, they may feel distressed, anxious or isolated.
Share our information for patients on pain in terminal illness.
Assessing pain
Carrying out regular pain assessments can help you to know how the pain changes over time, and how it responds to different painkillers. This may also help other professionals involved in their care. Asking these questions should help you gain a better understanding of the patient’s pain:
- 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 10, how bad is the pain?
- How long have you had it?
- When did it start?
- How long does it last for?
- Is it new or have you had it before?
- What makes the pain better or 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 like vomiting, finding it hard to look at light, needing to empty your bowels, or breathlessness?
- Are you having any homeopathic treatment?
- How is it affecting your daily activities?
Your service might use a pain chart to assess a patient’s pain. It can help to ask the patient to grade their pain on a scale of one to 10, but not all patients will be able to do this.
Assessing pain in non-communicative patients
The patient is always the best person to tell you about their own pain. But it can help to ask a carer, family member or friend about the patient's pain, too. If the patient has trouble communicating verbally, use a different method, like a visual chart or picture cards.
If the patient is unable to communicate at all, the following signs show they might be in pain:
- frowning or grimacing
- groaning or crying
- changes in breathing
- changes in mood
- agitation or increased temper
- lack of concentration
- withdrawal or refusal to make eye-contact
- refusing care
- refusing food
- being reluctant to move
- bending over or favouring one side when walking
- massaging, rubbing or guarding the painful area.
Report new or intense pain to the patient’s district nurse, specialist nurse or GP straight away.
You can share our information on medication and pain relief for patients and those supporting them.
Managing pain
There are different painkillers (analgesics) and non-drug techniques available and most patients' pain can be managed well.
Many patients worry about painkillers. It's important to have open discussions with the patient and make any decisions about painkillers together.
Listen to your patient's concerns and address their worries. Common worries about painkillers include:
- side effects
- addiction
- worrying that needing painkillers means the illness is progressing, or that they will die soon
- worrying that taking painkillers now means that they won’t work when the pain gets worse
- belief that pain is an inevitable part of illness and needs to be endured
- worrying that painkillers will make death come more quickly.
Painkillers
Prescribers should ttart at the appropriate level of painkillers for the patient's pain by following the World Health Organisation's analgesic ladder.
Read more about the World Health Organisation analgesic ladder.
The three main types of painkillers are:
- simple painkillers for mild pain – like paracetamol, aspirin and ibuprofen
- weak opioids for moderate pain – like codeine and tramadol
- strong opioids for severe pain – like morphine, oxycodone, buprenorphine and fentanyl.
Different things can cause physical pain. It may require a combination of different types of painkillers.
There may be a period of trial and error before finding the right painkillers for the patient. They may need reassurance during this time.
Patients might also use painkillers that they buy over the counter alongside prescribed medicines. So ask them if they're taking over the counter medications.
Opioids
Opioids are similar to morphine. They work for most – but not all – types of pain. Opioids have some side effects that prescribers should know about:
- Constipation – laxatives should be prescribed and the dose altered until the patient’s bowel movements are an acceptable frequency for them.
- Nausea and vomiting – antiemetics should be prescribed.
- Sedation – tell the patient and anyone supporting them that they may become more drowsy or want to sleep more.
Opioid overdose (toxicity) can cause:
- extreme drowsiness
- difficulty breathing
- delirium
- jerking movements.
Tell the patient’s doctor or district nurse immediately if this happens.
Non-opioid painkillers
Other drugs can be used when opioids are not appropriate. Some drugs used to manage other symptoms can manage pain too. These include:
- antidepressants for nerve pain
- anticonvulsants (anti-seizure) for nerve pain
- antispasmodics such as hyoscine butylbromide for crampy pain (colic)
- steroids which reduce inflammation
- bisphosphonates for bone pain.
Administering painkillers
There are several ways to give painkillers:
- oral, using tablets, dispersible tablets or syrups
- sublingual (dissolving under the tongue)
- buccal (dissolving on the inside of the cheek)
- transdermal patch (slow release patch on the skin)
- subcutaneous injection (under the skin)
- syringe pumps (also known as syringe drivers) for continual infusion of medication.
With the right treatment, most patients’ pain can be managed well. If the patient is in pain, despite treatment, let their doctor or specialist nurse know so they can change the dose or add new treatments. If their pain is difficult to manage, refer them to the local palliative care team.
Managing breakthrough pain
Sometimes a patient’s pain may increase, even though it is already being managed with painkillers. This happens when the pain becomes stronger than the pain control the patient is on. This is known as breakthrough pain.
Breakthrough pain can be brought on by moving, sneezing or coughing. Or it might happen when the dose of a longer-acting painkiller starts to wear off.
The prescriber can anticipate breakthrough pain and prescribe an appropriate drug as required (PRN). Oramorph liquid, Sevredol tablets, oxycodone capsules and liquid are fast-acting opioids which are often used to treat breakthrough pain. They treat pain quickly and their effect will usually last for four to six hours. They can be used on top of the person’s regular long-acting medication.
Contact the patient's GP or nurse prescriber if nothing has been prescribed to help with breakthrough pain.
If you don’t feel comfortable dealing with painkillers or speaking to the patient about this, be honest with them and contact the patient’s district nurse, specialist nurse or GP.
Non-drug (non-pharmacological) techniques
TENS
TENS (transcutaneous electrical nerve stimulation) machines are attached to the body with electrodes placed wherever the pain is felt. They deliver gentle electric pulsing to the area, which can ease pain.
Acupuncture
Acupuncture is sometimes effective in treating chronic pain. It may be available at the patient's local hospice, hospital, GP practice, or a private practitioner. Read more about acupuncture.
Heat and cold
Hot water bottles and warm baths can ease pain. Using an ice pack on painful areas of the body might help too.
Complementary therapy
Complementary therapies can help someone relax, which can reduce pain. Common therapies include mindfulness, meditation, massage, aromatherapy, reflexology, hypnotherapy, music therapy and reiki.
Occupational therapy and physiotherapy
Occupational therapists (OTs) and physiotherapists can make adjustments to the patient’s home and daily activities to manage pain. They can recommend mobility aids to make moving around less painful. Changing positions regularly or using special cushions can help ease pain in particular areas too.
Talking therapy
An important part of treating physical pain is to address any psychological factors that may be impacting the patient’s experience of pain. Active listening and acknowledging and addressing any worries or concerns can be very helpful. The patient may benefit from sessions with a counsellor, psychotherapist, spiritual advisor or faith leader.
If the patient’s pain is getting in the way of their usual activities and social interactions, they may be feeling lonely, which can make their pain worse. Address social isolation by suggesting befrienders or day services. Check whether the Companion at home service is available in the patient’s area.
Distraction
Playing music, reading a book out loud or looking at photos can be relaxing and help to distract the patient from their pain. Help the patient to do activities that are meaningful to them, such as seeing friends.
If a patient doesn’t want treatment
Some patients might not want certain treatments, like painkillers, to manage their symptoms.
It’s important to keep the patient at the centre of every decision about their care, to make sure their needs and preferences are met as much as possible. Ask them why they don’t want treatment and explore any fears or concerns they have. If you don’t feel comfortable doing this, ask for help from a senior colleague, like the patient’s GP, a senior nurse, or a palliative care doctor.
There are lots of non-pharmacological techniques to manage pain. Let them know that they can still try these techniques even if they don’t want painkillers. Take some time to explain the different techniques available and explore what they would like to try.
The patient may find it helpful to include any decisions about treatment in an advance care plan. If they have one already, refer to this to find out what their preferences are. Read more about advance care planning.
Find out more about person-centred care and helping patients make decisions.
Pain emergencies
An important emergency linked to pain is spinal cord compression. Consider this if the patient complains of new back pain. They might describe the pain as coming on suddenly or over a number of days. It might be worse when they cough, sneeze, strain or move. Other symptoms associated with spinal cord compression are:
- changes in bladder and bowel habits, including retention or incontinence
- numbness, or altered sensation, especially below the waist
- rapid loss of mobility.
In patients with cancer, a history of bone metastases makes spinal cord compression more likely.
Read more about spinal cord compression.
Report any of these symptoms to the GP, district nurse or specialist nurse immediately. The patient should stay lying down until they've been examined.
There are several other types of palliative emergency that may happen - read more about these.
If the patient's pain is severe and uncontrolled even though they're on medication, this may also be an emergency. If this happens, speak to the patient's district nurse, specialist nurse or GP.
If patients can't take oral medication
If a person is unable to swallow tablets or syrup, or if they're vomiting, let their district nurse, specialist nurse, or GP know. They might consider transdermal patches or a subcutaneous infusion using a syringe pump for certain medications.
Read more about syringe pumps.
It's common for patients, family members and friends to worry about syringe pumps. If you do use a syringe pump, discuss this with your patient and their carer, family member or friends. Assure them it will improve symptoms and help the patient feel more comfortable.
Patients, family members and friends may worry that syringe pumps speed up the dying process. Reassure them that isn’t the case. Syringe drivers are just one way to give medicines. They can be used at any stage of the person’s illness
Share our information for the public on using syringe pumps with the patient's family and friends.
Information for patients and their family and friends
Share our free information for patients and their family and friends:
- our free booklet, Managing pain
- our free booklet, Having a syringe driver
- Pain in terminal illness website page
- Pain relief website page
- Sryinge driver website page
Useful resources
Scottish Palliative Care Guidelines: Pain
NICE Clinical Knowledge Summary: Palliative Care - Pain
NICE Clinical Guideline 140 – Palliative Care for adults: strong opioids for pain relief
Key points
- Everyone’s experience of pain is different.
- Pain is common in people living with a terminal illness but not all patients will have pain.
- Pain is subjective − pain is what the patient says it is.
- Physical pain can be made worse by psychological worries and distress.
- Try to address common concerns about pain and using painkillers.
- There are different painkillers and non-pharmacological techniques to manage pain.
- Be aware of side effects of painkillers.
- Report any signs of opioid toxicity to the patient’s doctor or district nurse immediately.
- Tell the patient’s doctor if they have new back pain. This could be a symptom of spinal cord compression which is a palliative emergency.
- Try to address common concerns around the use of a syringe pump.
- Signpost carers, family or friends to our information on medication and pain relief.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
