Is it painful at the end of life?

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.

mariecurie.org.uk - Pain when someone is dying | Pain at the end of life - Marie Curie

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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.

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

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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.

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.

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.

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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.

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:

mariecurie.org.uk - Pain when someone is dying | Pain at the end of life - Marie Curie

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