When someone is in their last days of life they may need medicines for pain, feeling sick and other symptoms. The aim is to make people as comfortable as possible when they are dying. These medicines can be organised in advance to make things easier when people need them.
This information is for family and friends of someone who is approaching the end of life. If you have any questions, speak to the person’s healthcare team. Sometimes it can feel like a big responsibility to help someone with their medicines. We are here to support you. You can contact our free Support Line on 0800 090 2309 or email support@mariecurie.org.uk
Why do people need medicines at the end of life?
Some people will need medicines in their last days or hours of life. Medicines can help with symptoms such as:
- pain
- breathlessness
- agitation
- feeling or being sick
- noisy breathing.
Not everyone will have these symptoms or need medicines. It can depend on your family member or friend's illness, treatment and symptoms.
Some people will have these symptoms earlier in their illness. They might already be taking medicines for the symptoms.
As well as medicines, there are other things that can help to manage symptoms.
How do I get medicines for the end of life?
Talk to your family member or friend’s doctor or nurse about what medicines they might need at the end of life. If they are at home or in a care home, speak to their GP or district nurse. Their doctor or nurse should assess the person and see if they need medicines. They can also talk to you about organising medicines for the coming days or weeks.
How to get end of life medicines at home or in a care home:
- The doctor (usually a GP) or nurse prescribes medicines.
- The prescription can be sent electronically to a pharmacy of your choice or you can take it to the pharmacy. You can ask the GP surgery or nurse if they can check whether the pharmacy has the medicines in stock.
- You can tell the pharmacy if the medicines are needed urgently.
- Sometimes the pharmacy will need to order the medicines if they do not have them in stock. They may be able to check if other pharmacies have them.
- The medicines may need to be collected from the pharmacy. Or, you can arrange for them to be delivered. There is sometimes a cost for this and it can take longer.
- Some medicines will need to be given by a doctor or nurse who will visit your family member or friend. This should be arranged by the GP or district nurse.
You could also ask someone else to help with these things. For example, you may have another family member, neighbour or friend who could collect the medicines. They will usually need the person’s name, date of birth and address to collect the medicines. For some medicines, the person collecting it may need to show their own ID (for example, passport or driving licence).
What medicines might be used at the end of life?
The medicine your family member or friend needs will depend on their symptoms and what is causing them. Here are some medicines that may be prescribed:
- Midazolam can help with agitation or breathlessness.
- Lorazepam can help with anxiety.
- Morphine or oxycodone can help with pain or breathlessness.
- Levomepromazine, haloperidol or cyclizine can help with feeling or being sick (nausea or vomiting).
- Hyoscine butylbromide or glycopyrronium bromide can help with noisy breathing from chest secretions.
These are not the only medicines used. Other medicines can also be used.
Some people may need different medicines if they are uncomfortable. They may also need medicines to help with side effects from other medicines (see What can help with side effects? below).
The medicines we talk about here can also be used at other times. For example, they may be used for managing symptoms at any stage of an illness. Being prescribed one of these medicines does not necessarily mean your family or friend is approaching the end of their life.
Just in case medicines
Just in case medicines are medicines that your family member or friend may not need now but might need in their last days or weeks of life. The doctor or nurse can prescribe these medicines in advance. They can be kept in your family member or friend’s home. This means they can have them more quickly if they need them. The medicines should only be used after a doctor or nurse has said they should be started. Just in case medicines are sometimes called anticipatory medicines.
‘As and when’ medicines
‘As and when’ medicines are medicines that can be taken if they are needed, rather than on a specific schedule. These are sometimes called PRN medicines.
For example, someone may be taking a regular pain medicine twice a day. But if they are in pain before their next dose, there may be a different medicine they can take. They may not need the different medicine all the time and only take it when they need it. This is an ‘as and when’ medicine.
The doctor or nurse should give clear information about how much and how often these medicines can be taken. They should also explain the circumstances when they can be taken. For example, if your family member or friend is getting a symptom between doses of their regular medicines. Check with the healthcare team if you’re not sure.
It’s important to note down when any medicines have been given and how much was given.
If the person is needing a lot of ‘as and when’ medicines, talk to their doctor or nurse. They may need to change or increase the dose of their regular medicines to help them feel more comfortable.
How are medicines given at the end of life?
Some medicines can be taken orally (by mouth). But sometimes this is not possible towards the end of life. For example, if your family member or friend cannot swallow, is not awake, is being sick, or the medicines are not working.
Medicines can also be given:
- by injection
- through a syringe driver
- through patches on the skin.
A syringe driver is a small battery-powered pump. It gives a steady flow of medicines through a small tube just under the skin.
If your family member or friend is finding it hard to take their medicines or you do not think they are working well, speak to their doctor or nurse. They can explain what other options may be available.
Who gives medicines at the end of life?
Some medicines will be given by a doctor or nurse. For example, if the person you’re caring for needs medicines through a syringe driver, a doctor or nurse will set this up.
Other medicines may be taken by your family member or friend themselves. Or you, as the person caring for them, may be able to give them the medicines. This can mean they get them straight away, rather than waiting for a healthcare professional to come and give them. If you do not feel comfortable with this, speak to their doctor or nurse.
Hard-to-manage symptoms
If your family member or friend’s symptoms are hard to manage, speak to their doctor or nurse. They may suggest:
- changing the amount of medicine (the dose)
- trying a different medicine
- getting advice from a specialist palliative care team
- using a syringe driver to give a steady flow of medicine.
Sometimes, people have symptoms that cannot be managed well. The doctor or nurse should be able to explain this to you and look at any ways to make them more comfortable.
Side effects of medicines at the end of life
Everyone responds differently to medicines. Some people do not have side effects. Some people may have side effects. Side effects are unwanted effects from medicines. End of life medicines can sometimes make people:
- feel sick
- sleep more
- find it hard to poo (have constipation)
- see or hear things that are not there (hallucinate).
What can help with side effects?
It's important to speak to the doctor or nurse if you notice any side effects. They may need to change the amount of medicine or change the medicine. Or they may give them a different medicine to help with the side effects. For example, they may prescribe a medicine to loosen their poo (a laxative) if they are taking a medicine that makes it hard for them to poo (makes them constipated).
If you’re worried or you think your family member or friend is having unwanted side effects, contact their doctor or nurse.
Understanding your family member or friend’s wishes
Making decisions about medicines and side effects is personal. Some people will be OK with some side effects. For example, they may want to not be in pain, even if this means they are drowsy or asleep. Other people might want to be more aware or awake, even if it means they are not so comfortable. It can help to understand what’s important to your family member or friend and tell their doctor or nurse.
It can also help to share any concerns or worries you have with the person’s doctor or nurse.
How do I know if something is a side effect?
Sometimes symptoms are expected, and may not be a side effect of medicines. For example, many people will sleep more or be less aware of their surroundings in their last days or hours of life. If you’re not sure, you can check with the doctor or nurse.
Do end of life medicines make people die faster?
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 like morphine are very safe and effective when prescribed and taken correctly.
How can I help with end of life medicines?
There are different things you can do to help if you want to and are able to:
- Speak to the doctor or nurse if you feel your family member or friend has new symptoms or if their symptoms are getting worse.
- Tell the doctor or nurse if you notice any side effects.
- Ask their doctor or nurse if they can organise just in case medicines.
- Support with collecting medicines from the pharmacy, or ask someone else to help.
- Ask the doctor or nurse for information about the medicines they are having.
- Keep a record of what medicine your family member or friend has had, how much they’ve had and at what time.
Managing end of life medicines
It can be difficult to support someone with medicines.
There may be things that you are not comfortable doing. For example, giving the person medicines. That’s OK. Speak to the doctor or nurse about this, and they should be able to arrange for someone to help.
You may also find it difficult to keep track of the different medicines or know when to give them. Speak to the person’s doctor or nurse about this.
There are things that can help:
- Dosette boxes have small compartments which you can fill with your medications ahead of time, so you know which medicines they need to take and when.
- A medication planning app on a smartphone or tablet can tell you when it’s time for the next dose. Many apps are free to download.
- Some people find it easier to write the medicines and doses down on a piece of paper and tick them off when they’ve been taken.
If the person lives alone, talk to their doctor or nurse about what support is available.
Giving the wrong medicine or wrong dose
It’s important to tell the doctor or nurse if your family member or friend has had something different from what was prescribed. This can help them to understand what your family member or friend needs. Tell their healthcare team as soon as possible so they can decide what to do.
Should other medicines be stopped at the end of life?
Your family member or friend’s doctor or nurse should look at all the medicines they are taking. They may suggest stopping some medicines. For example, if the medicine is no longer helping them or could cause other problems. You can ask them to explain why they are suggesting this. These decisions should be made with the person and healthcare professional together, where possible.
Some medicines should not be stopped suddenly, because this can make the person feel unwell. They can be stopped gradually – for example, taking less each day. The person’s doctor or nurse should give them advice on whether a medicine needs to be stopped gradually and how to do this safely.