What is an advance care plan?

An advance care plan (ACP) is a record of the choices you have made about any care and support you might receive in the future. This can be used as a guide if you become too unwell to make decisions for yourself. You might also see ACPs called a ‘statement of wishes and care preferences’ or ‘preferred priorities for care document’. In Scotland they might be called an ‘anticipatory care plan’. These all mean the same thing and have the same purpose.

It might be difficult to talk with your carer, family or friends about why you want to make an ACP. It’s important to know they can be used in two different ways. They can be used to share your wishes for what you would like to happen during end of life care and they can also be used to make sure your wishes are followed during treatment when you’re not well enough to make decisions for yourself.

To create this, you will need to talk to your care team about how you want to be cared for in the future, including any decisions you have made about end-of-life care. These conversations can also involve people who are important to you if you want, such as your carer, friends and family. Your care team can explain what kind of treatment you might need in the future, and which decisions might need to be made.

ACPs explain what you’d like the people caring for you to do if you become too unwell to make decisions for yourself. Creating an ACP might involve various conversations over time as you decide what you want to include in the plan. It’s important that you’re involved in decisions about your care, and that those caring for you understand what matters to you about your care. You can start these conversations whenever you’d like by talking to your healthcare team.

It can be quite daunting thinking about an ACP and when it might need to be used. It’s important look after yourself and take your time with this, doing it at your own pace.

After you’ve had these conversations and made decisions about your future care, a document can be written to explain your wishes – this is your advance care plan. It can be kept in your medical records electronically and you can print it off. If you move to another hospital for treatment or appointments the plan can move with you. 

It can help to have a printed 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.  

No, ACPs are not legally binding. Your care team will still need to decide what’s best and makes the most sense at the time, for example, whether a particular treatment is appropriate or whether you’re well enough to move to a particular place. But healthcare professionals will use your advance care plan as a guide to make decisions if you’re not able to make them yourself.

The information in your ACP should explain what matters most to you about how you’re cared for when you’re unable to make decisions for yourself. This might include:

• who you’d like to care for you
• where you’d like to be cared for when you’re too unwell to look after yourself, like your home, a hospital or a hospice
• where you’d like to die
• treatments you would or wouldn’t want to have
• who you’d like to make decisions about your care if you’re not well enough to make them yourself
• any spiritual, religious or cultural practices that you would like to be a part of your care
• anything else that’s important to you that you want to be a part of your care, such as creating a digital legacy. You can find out more about them here.

While this might sound overwhelming, remember there are people who can help you with make your ACP, including your healthcare team and the people in your life like your carer, family or friends. You also don’t have to make an ACP unless you want to and it feels like the right time for you.

Yes, you can change your mind about what’s in your advance care plan. If something has been recorded that you no longer feel is right for you, then you can let your healthcare team know. You can then have a conversation with them about what you want to take out and if you want anything else to go in there.

Making an advance care plan might help you feel more in control of your own care. You might also be able to understand more about which different treatments might work or might not work for you through conversations with your care team. They will be able to talk to you about what kinds of decisions are likely to have to be made about your care. This means you can think about what you’d want in these situations. You should always be able to speak to your care team to go through any questions you might have.

No, an ACP is completely voluntary, and you shouldn’t feel pressure to include anything you don’t want to. You can still get advice or support from the people around you if that’s what you want. Talking to the people close to you and to your care team can be very helpful when thinking about these kinds of plans. But if you don’t want to include something, you shouldn’t. If you decide to make an ACP then what’s in there should be your decision about what you want for your future care. It’s also not set in stone – you can make changes to your advance care plan at any time if you want to. 

You can make an ACP whenever you want. Anyone can make one if they want to tell the people around them about their wishes for their future care. You don’t have to make an ACP because you have cancer – you should only make one if you want to.

You might want to make an ACP if you’ve been told your cancer can’t be cured and you will likely die from your cancer. You might also make one if you want to make sure specific decisions are made on your behalf if you’re no longer able to make those decisions yourself. You might want to make one to so you know that the people around you would know what you want if you become unable to tell them.

You can start talking to your care team or the people around you about an ACP at any time that feels right for you. If you’re interested in finding out more about ACPs but no one has mentioned them to you, let your medical team know and they can give you more information.