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 someone close to you is in pain. There are things that can help with their pain and there is support available for you.

This information is for family and friends of someone who is approaching the end of their life. It may also be useful for people living with a terminal or life-limiting illness.

If you have any questions or need support, our free Marie Curie Support Line is here for you on 0800 090 2309 or you can email us at support@mariecurie.org.uk.

Some people experience pain as their illness progresses and in their last weeks, days or hours of life. But not everyone gets pain – some people have no pain at all.

There are different things that can help with pain including medication, support, heat and cold therapy, changing position and equipment. These things might be arranged by the GP or district nurse, and sometimes people will need help from a specialist team. These healthcare professionals should help to get the pain under control.

The pain might not go away completely, but medicines and support 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 (see How can family and friends help with pain? below).

No one knows exactly what people feel when they are dying. Many people look calm or relaxed when they die, so dying itself probably does not cause pain.

Some people experience pain or discomfort in their last weeks and days of life. This can be caused by an illness, treatment or other things. There are things that can help to manage their pain and things you can do to help them.

Pain happens when damaged areas of the body send signals to the brain. Sometimes pain continues even when the initial damage or injury has healed (this is sometimes called 'chronic pain'). Pain can be caused by a person's illness, by a treatment or operation, or 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 feeling, 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. 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.

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 questions about their pain, such as:

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.

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 speak or tell you about their pain, you can look for signs that they are in pain. Some of these things are normal changes towards the end of life. They may not always be a sign that the person is in pain.

Signs of pain might include:

Tell the doctor or nurse if you've noticed any changes, and they can assess your family member or friend.

You should ask for help if your family member or friend has:

If your family member or friend has any of the symptoms above or you're worried about them, speak to their doctor or nurse.

If the person is at home or in a care home, you can contact the person's GP, or district or community nurse. 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. If you feel that the person needs medical care or advice that day, tell the receptionist.

You may have been given contact details for a specialist team who you can contact directly. If you have, it's best to contact this team first. Keep their contact details in a safe place and share them with anyone who will be helping to look after your family member or friend.

If the person is in a hospital or hospice, ask the staff who should be responsible for their care or pain management.

There are different ways to manage pain when someone is in their last weeks or days of life. The focus will be on making them as comfortable as possible.

What works best might depend on:

Tell the doctor or nurse if there's something that has or has not worked well in the past. They might need to try different things to see what works best. Always speak to the person's doctor or nurse if you have any questions.

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:

Other medicines, such as anti-depressants and steroids, can also be used to treat pain.

Your doctor or nurse will tell you when the medicines need to be taken. Many people will need to take painkillers regularly (sometimes called 'around the clock doses').

Some people think they should wait until the pain is bad before taking any painkillers, but this is not true. 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. They may give you extra painkillers to take in between your regular doses if you need it (sometimes called a 'rescue dose' or 'breakthrough dose'). Pain is not something that you have to put up with.

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.

Here are some things that can help to manage medicines:

If you're finding it difficult to keep track of your family member or friend's medication, tell their pharmacist, doctor or nurse.

'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. It means you do not have to get a prescription or go to a pharmacy in an emergency.

A doctor or specialist nurse can prescribe them these medicines in England, Scotland and Wales. You then keep the medicines at home in case your family member or friend needs them. If you do, a district or community nurse can come and to give them to your family member or friend.

For emergency medical supplies in Northern Ireland, speak to your doctor, nurse or pharmacist.

There are different ways to have medicines including tablets, injections, patches and syringe drivers.

A syringe driver (or syringe pump) is a small battery-powered pump. It delivers a steady flow of medicines through small tube under the skin. It can be useful if the person is not able to swallow tablets, is feeling or being sick, or if the tablets are not working.

Syringe drivers are often used at the end of life because they are sometimes the easiest way to give someone the medicines they need to feel comfortable, but they can be used at any stage of an illness.

Some people worry that having strong pain killers such as morphine can make someone die more quickly. But there is no evidence for this. We know that 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. If the person takes the medicines as prescribed by their doctor and is approaching the end of their life, this is not usually a problem.

If someone has a history of a substance use disorder or addiction problems, they may still benefit from opioid painkillers if they are in pain. Worries about future substance use addiction may not be so relevant when they are dying. Speak to their doctor about the benefits and risks of taking medicines, and what alternatives may be available.

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.

There are a lot of other things that can help to control pain or make it better:

Sometimes, it's 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 them to give medication. But sometimes it may be appropriate 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 keep the pain under control.

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* or email us at support@mariecurie.org.uk.

There are a lot of things that you can do to support your family member or friend during this time:

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.

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, or a local carers support group.