Pain when someone is dying
It's normal to be worried about pain when someone is in their last weeks, days or hours of life. Not everyone experiences pain and there are different ways that pain can be managed. We know it can be difficult when a family member or friend is in pain. That's why we've written this information about managing pain, how family and friends can help with pain, and what support is available.
This information is aimed at family and friends, but it may also be useful for people living with a terminal or life-limiting illness. You may also find it helpful to read more information about pain in terminal illness and pain relief.
If you have any questions or need support, our Support Line is here for you on 0800 090 2309.
On this page:
Does everyone get pain when they are dying?
No – not everyone gets pain in their last weeks, days or hours of life. Some people have no pain at all.
However, we know that many people with a terminal illness do experience pain. For people who are in pain, there are different things that can help including medication, support and other practical things. This might be arranged by the GP or district nurse, but sometimes people will need help from a specialist team. These things should help to get the pain under control.
These things may not take away the pain completely, but they should help to make it more manageable. If you are the person's family member or friend, there are things you can do to help as well.
Most people do not die in pain. With the right treatment, care and support, the vast majority of people we see are comfortable and not in pain at the end of life.
What causes pain?
Pain is a physical sensation. It happens when damaged areas of the body send signals to the brain. Pain can be caused by the person's illness itself, or by a treatment or operation they've had. It could also be caused by a condition they've had for a while, such as arthritis.
People who have experienced pain during their illness or who have certain conditions, such as cancer that has spread around their body, may need more support to manage their pain.
Although pain is a physical sensation, we also know that lots of other things can affect how people experience pain. Feeling stressed, anxious, worried, tired, or alone can all make pain worse. Towards the end of life, pain can sometimes be worse if someone is finding it difficult to accept that they are dying or they are worried about how others will cope when they are gone.
Read more about different types of pain that people may experience.
Your family member or friend may also be experiencing other symptoms. Read more about what to expect in someone's last weeks and days.
The doctors and nurses really helped to manage Matthew's pain. Most of the time, he was not in pain and he did not die in pain. This is one of the biggest comforts for us all.
How is pain assessed?
The healthcare professional will talk to your family member or friend about their pain so they can find the right treatment for them. This might involve asking them questions and doing a physical examination. They might ask about things like:
- Where is the pain?
- What does it feel like? (aching, tingling, sharp, burning)
- When did it start?
- Is it constant or on and off?
- Does anything make it better or worse?
- How bad is the pain on a scale of 0 to 10, where 0 is 'no pain' and 10 is 'the worst pain possible'?
Everyone feels pain in their own way and everyone responds to it differently. This means the person is in the best position to say what their pain is like.
If your family member or friend is unable to communicate
When someone is in their last weeks or days of life, it is normal that they sleep more or might become unconscious. They might also have a condition or disability that makes it difficult for them to communicate verbally. The doctor or nurse should try to involve them in discussions and decisions if possible by asking yes or no questions, or using visual aids (like a pain scale).
If the person cannot communicate verbally, you can look for signs that they are in pain. These include:
- frowning
- changes in their mood – for example, being quieter or becoming aggressive
- changes in their routine such as refusing food or drink (although this can be a normal part of dying)
- changes in their posture, including being tense or rigid
- agitation or distress
- not being able to concentrate
- becoming withdrawn or not making eye contact.
Some of these things are normal changes towards the end of life and the person may not be in pain – for example, it's normal for people to stop eating and drinking towards the end of life. Tell the doctor or nurse if you've noticed any changes, and they can assess your family member or friend.
My husband could not talk but the hospice staff learnt how to tell if he was in pain or just a bit restless or uncomfortable. If he was in pain, he would grab at things and seem distressed. They would assess him and then quickly adjust his medication to help him.
When should I ask for help?
You should ask for help if your family member or friend has:
- new pain (for example, the pain might feel different or be in a new part of their body)
- pain that gets worse
- pain that is not managed by their current medication or care.
If your family member or friend has any of the symptoms above or you're worried about them, speak to their doctor or nurse.
Do not be afraid to ask for help if the pain is not manageable or is getting worse. With the right care and support, pain should be able to be managed.
Who can help?
You may have been given contact details for a specialist team who you can contact directly. Keep these safe and share these with anyone who will be helping to look after your family member or friend.
At home or in a care home
If your family member or friend is at home or in a care home, their GP is responsible for their care. They might:
- arrange for district nurse or community nurse to come and help with their pain
- refer your family member or friend to a specialist team who are experts in pain management – this might be a hospice at home team, palliative care team or other pain management specialists.
We know that it can sometimes be difficult to get through to the GP surgery or get an appointment, and this can be frustrating and upsetting. You may need to call a few times to be able to get through to them. If you feel that your family member or friend needs medical care that day (for example, if they have pain or other symptoms that are not under control), it can help to let the receptionist know.
If you're not happy with the care provided by the GP or GP surgery, it might help to discuss your concerns with the GP initially. You can also ask to speak to another doctor in the GP practice or the practice manager. Some GP surgeries have an end of life care champion who may be able to help.
In a hospital or hospice
If the person is in a hospital or hospice, ask the team who is responsible for their care or pain management.
Read more about the different people who may be involved in their care.
How can pain be managed towards the end of life?
If someone is in their last weeks or days of life, the focus will be on making them as comfortable as possible. There are different ways to manage pain. This might depend on what is causing the pain, what type of pain they have and what is most helpful to your family member or friend as an individual. Always speak to the person's doctor or nurse to find out what works best for them.
Pain medication
There are lots of different medicines for treating pain. Some are for different types or severity (amount) of pain. It can take a while to find the medicines that work best for your family member or friend.
The three main types of painkillers are:
- simple painkillers for mild pain, such as paracetamol and ibuprofen
- weak opioids for moderate pain, such as codeine or tramadol hydrochloride
- strong opioids for severe pain, such as morphine or oxycodone.
It's common to take simple painkillers alongside opioids for moderate or severe pain.
Other medicines, such as anti-depressants and steroids, can also be used to treat pain.
Read more about different pain medicines, including side effects.
When to take pain medicines
Some people think they should wait until the pain is bad before taking any painkillers. It is better to take painkillers as often as your doctor prescribed, even if you're not experiencing pain at the time. This helps to keep the pain under control between doses. If you're taking pain medicine regularly and it's not managing your pain, speak to your doctor or nurse. Pain is not something that you have to put up with.
Managing medications
Taking medication regularly as the doctor or nurse has prescribed is important. But this can be difficult, especially if they are taking a lot of different medications. It can help to create a chart of what needs to be taken and when, and tick things off when they have been taken. There are also some apps that can help with this if you have a smartphone or tablet. If you're finding it difficult to keep track of your family member or friend's medication, tell their doctor or nurse, or ask someone to help you.
Read more about managing medications.
Just in case medication
Just in case or anticipatory medicines are medicines that your family member or friend does not need now but might need if they become more ill or in pain towards the end of life. A doctor or specialist nurse can prescribe them these medicines in England, Scotland and Wales. You then keep them at home in case your family member or friend needs them. If you do, a district nurse can be called out to the house to give them to your family member or friend.
For emergency medical supplies in Northern Ireland, speak to your doctor, nurse or pharmacist.
Read more about just in case medication.
Syringe drivers
There are different ways to have medicines including tablets, injections, patches and syringe drivers. If someone is unable to swallow tablets, they're vomiting, or the tablets do not seem to be effective, the doctor or nurse may recommend using injections, patches or syringe drivers.
A syringe driver (or syringe pump) is a small battery-powered pump. It delivers a steady stream of medication through small plastic tube under your skin. Syringe drivers are often used at the end of life because they are the easiest way to give someone the medicines they need to feel comfortable. But they can be used at any stage of an illness.
Read more about having a syringe driver.
Common worries about medicines
Some people worry that having strong pain killers such as morphine can make someone die more quickly. This is not true. Morphine and other opioids are very safe and effective when prescribed and taken correctly. Morphine and other strong painkillers can even be taken for a long time.
Some people are worried about the risk of addiction. Becoming addicted to opioids is rare for people needing pain relief for terminal illness.
If you're worried about any of these things, speak to your doctor or nurse. They can tell you what medicines might be suitable for you and answer any questions you might have.
Other ways to manage pain
There are a lot of other things that can help to control pain or make it better:
- Emotional or spiritual support – talking to someone about concerns they have and their thoughts can help. They might be able to get support through a local hospice, hospital or faith leader.
- Heat and cold – using a hot water bottle or ice pack may help reduce someone's pain.
- Equipment – getting a hospital bed or supportive chair may help someone feel more comfortable. Speak to their doctor or nurse.
- Positioning – changing position or using pillows for support may help them.
- Distraction – try to distract the person with things they might enjoy, like talking, listening to music, watching TV or reading a magazine.
- Making someone comfortable – things like having a wash, brushing their teeth, toileting or changing clothes can help.
The Marie Curie Nurses were only there for an hour at a time, but Mum always looked so fresh and beautiful after they had been. They lifted her mood and made a really big difference to how she was feeling.
What if the pain cannot be managed?
Sometimes, it is difficult to manage pain. The medication they are on may not be keeping their pain under control or they may be getting breakthrough pain, where they have pain even though they are taking regular pain medication.
The doctor or nurse will assess the person's pain to see what might work. It can take time to find the medicines that work best for the person.
Sometimes the person will need to be looked after by experts in pain management. This might be done at home or in a care home, where people will visit your family member or friend to give medication. But sometimes it is best to manage pain in a hospital or a hospice. Hospices are experts in pain management and often people find it reassuring to have support to help manage medication and keep the pain under control. Read more about hospice care.
It can be upsetting to see your family member or friend in pain. You can support them by comforting them and using some of the techniques below. You can also speak to a nurse or trained member of staff on our free Support Line on 0800 090 2309.
How can family and friends help?
There are a lot of things that you can do to support your family member or friend during this time:
- Speak to their doctor or nurse if their pain is not being managed or you have any concerns.
- Make sure they have just in case medications arranged if they are at home – speak to their GP or district nurse if they do not.
- Help with medication – you could create a chart or set up an app with reminders.
- Help them to feel more comfortable – if the person needs help and you are able to, you could help with things like making their room comfortable, washing, going to the toilet and mouth care.
- Spend time with them – you could listen to music, read them a book or watch TV. You might want to talk about your lives or watch videos of other family and friends. They might also need time to rest, but may still appreciate you just being there.
- Have physical contact – they might want a cuddle or for you to hold their hand. Even if someone is unconscious, they may still be able to feel you holding their hand or hear you speaking to them.
- Listen to any worries or concerns they might have – try to listen without judgement, acknowledge their concerns and see if there's anything you can do to support them. You could ask them questions such as, 'Is there anything on your mind?' or 'Is there anything you're worried about?'
- Help them achieve small goals – they might want to watch a programme together, sit outside for a bit or write a letter to someone.
Pain can be made better or worse by how someone is feeling. So, you can make a big difference by listening to them and giving them support during this time.
Even at the end of Mum's life, we still had hope. Not hope for a cure. But hope for the little, important things. Hope that she would have a few good hours without pain to talk together. Hope for a cuddle together in bed. Hope that she would feel the sun on her face again. We helped her achieve these things and her positivity helped to get us through.
Support for family and friends
It's also important that you get support that you need during this time. It might help to take short breaks away from caring if you want to and feel able to. It can also help to talk to other people about how you're feeling – you might feel alone or that no one else understands what you're going through. You may have family or friends you can speak to, and you can call our free Support Line on 0800 090 2309.
We also have a free Companion over the phone service, where you can receive regular telephone support from a trained volunteer. Read more about Companion over the phone.
Marie Curie Nurse Maria describes the common changes that you might notice in someone’s last weeks, days and hours of life. Peter, Shital and Tracey also talk about their personal experiences of looking after their loved ones during this time. If you’re caring for someone who is dying, you might find that there are some things you can relate to. But you might find that you don’t notice these changes or that you notice them at different times – everyone’s experience is different.
Update: In this video, we talk about skin changes (4:26). Our information has since been updated as follows: People with lighter skin tones might look slightly blue, or their skin can become mottled (have different coloured blotches or patches). On people with darker skin tones, blue can be hard to see. It may be easier to see on their lips, nose, cheeks, ears, tongue, or the inside of their mouth. Mottling is also harder to see on darker skin tones – it might look darker than normal, purple or brownish in colour.
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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.
