Planning for the end of your life

When you find out your cancer is terminal, you might have to answer some questions about what happens at the end of your life. It can be helpful to have someone with you when you’re making these decisions.  

If you’re not sure what to say or want to stop the conversation, you can do this at any time. Just let your care team know that you’re not feeling up to it and you’d like to pause the conversation or move it to another day when you feel more prepared. 

These are some of the questions you might be asked: 

• Where would you like to be cared for? 

• Where would you like to die?  

Here are some questions you might have:  

• What happens if I’m not well enough to make these decisions?  

• Do my family have any say in what happens to me? 

Other things you may find it helpful to talk about with your care team, family or friends could include: 

• Things you’d like to do before you die, and making plans for these where possible 

• What you’d like to happen at your funeral 

• What you’d like to happen to your things 

• How you’d like your family and friends to remember you on your birthday, or in general 

• What you’d like to happen to your email and social media accounts – your ‘digital legacy’. You can find out more about this further down the page. 

You will usually be given some time to think about where you would like to be when you die.  

The three options are usually:  

• At home 

• In a hospice  

• In hospital  

There are some situations where you might not be able to be moved home, or to a hospice, if you need more medical attention than it’s possible to give outside of hospital.  

Where you’re cared for and where you die aren’t necessarily the same thing. You might want to be cared for at home, but would rather move into hospital or a hospice for the last stage of your life if you feel more comfortable there.  

Sometimes the people close to you may find it difficult to manage your care at home. They might be worried about giving you medication and be concerned about getting things wrong. It’s a good idea to talk to the people you’re close to about where you want to die before you make your choice.   

You might think that hospices are like hospitals, or are places just for people a lot older than you, but that’s not the case. The purpose of hospices and hospice care is to improve the quality of life of people with an incurable illness. They are often very warm and welcoming spaces that are designed to make people feel comfortable.  

You can go to a hospice to help control difficult symptoms and/or to die. You might also be offered ‘hospice at home’ care. This is when a hospice care team will come to your house and work alongside community teams, like a GP and district nurses, to support you. This means you don’t always have to stay overnight in the hospice.  

If you’re staying in a hospice, you can have visitors. You might be used to having set timeslots for visitors if you’ve been in hospital, but lots of hospices are open most of the working day for visitors and are happy for people to drop in. 

It’s important to know that hospice care is free for you – it’s paid for through NHS funding and public donations, and you won’t be asked to pay for any of your hospice care. 

If you’re thinking about hospice care or going into a hospice, it can be useful to go and have a look around ones close to you. You can get an idea of the environment, meet some of the staff that might be supporting you and ask any questions you might have.  

You can find out more about hospices and hospice care at Hospice UK.

A lot of people will want to know more about what is actually going to happen while they are dying. This is a very difficult question for anyone to answer, and what happens is very specific to the type of cancer you have, where it is in your body and the treatment you’ve had.  

What happens to a lot of people is that you will start to feel weaker and won’t have as much energy as you had before. Your appetite might be affected, you might not want to eat much and you might need more pain relief. You may find that you sleep more and spend more time in bed. You might need more support from your palliative care team with managing symptoms as well.  

Your doctors and nurses might talk to you about advance care plans. They can explain to you what kind of treatment you might need in the future, and what decisions might need to be made.  

The discussion can also involve people who are important to you if you want, such as your carer, friends and family. The advance care plan can include instructions on what you’d like the people caring for you to do if you become too unwell to make decisions for yourself. It can then be kept in your medical records, and if you move to stay somewhere else the plan can move with you. 

It can help to have a copy of your advance care plan somewhere obvious in your home, like attached to your fridge. This means that it’s easy to find for anyone who might need it, like a paramedic coming to your house, for example.  

The decisions you make might be about where you want to stay, what kind of treatment you do or don’t want, or who you want to make decisions for you. It can also include information about your religious, spiritual and cultural values and how this might impact how you want to be cared for.  

If you don’t want to think about this kind of thing, you don’t have to. An advance care plan is completely voluntary, and you shouldn’t feel pressure to add in anything that you don’t want to. It’s also not set in stone – you can make changes to your advance care plan at any time if you want to.  

If your doctor or nurse hasn’t spoken to you about advance care plans but you want more information, you can ask them at any time.  

A Recommended Summary Plan for Emergency Care and Treatment is also known as ReSPECT. It’s another document you can fill out to explain about your diagnosis and treatment, and explain what medical procedures you would and wouldn’t want in case of an emergency. ReSPECT plans can be used on their own or with an advance care plan to keep track of what’s important to you. 

A memory box can be a really helpful way to collect together things that are important to you. Some people also like to call these ‘journey boxes’.  

Lots of people make memory boxes after they get their terminal diagnosis. You can ask for it to be shared with your family after you die, or you can ask that your memory box isn’t shared with anyone else as it might be something you want to do just for yourself.  

It’s up to you to decide what to put in your memory box. You might want to print off some photos that are special to you. Some people also like to write letters that they can include in the box. This might be letters for your friends and family that you would like shared with them later, or you might want to write down some of your favourite memories.  

You can find any type of box that works for you to create your memory box, or there are some companies that sell boxes with suggestions of what to include. If you’d like to, you can search ‘memory box kit’ to see what options there are. Sam’s Gift is an organisation that creates these boxes specifically to support teenagers and young adults with cancer.  

You might find it helpful to talk to your care team and your Youth Support Coordinator, if you have one, to see if they have any suggestions of other things you might like to include in your memory box. 

Remember, it’s your box and you can put whatever you like in it, it’s for you and you can make it completely your own!  

There are lots of ways you can create things for friends and family to remember you by. You can ask your care team if they have any suggestions, and if you have a Youth Support Coordinator they might be able to help you with the things you’d like to make.  

A lot of people like to document their lives and keep in touch with friends and family online. This might be using social media accounts, email or other sites and apps.  

It can be helpful to think about what happens to these accounts after you’re gone. You can do this yourself, by creating a list of accounts, logins and passwords and instructions of what you would like done with these after you die. Or you can use sites like My Wishes to help you with this.  

You can use their tools to select the places where you have accounts and note down what you would like to happen to these. This means you can choose if you would like these accounts to keep running with someone else looking after them, or if you would like them closed down, or turned into a memorial page, for example. 

If you’re handing over your passwords to friends or family members, it might be worth having a think about the things you have on those accounts first, and thinking about whether there’s anything you wouldn’t want people to see or have access to.