What is advance care planning?
An advance care plan lets people know what’s important to you and how you’d like to be looked after in the future – particularly towards the end of your life. It can also be called a ‘future care plan’ or ‘anticipatory care plan’ depending on where you live in the UK.
Creating an advance care plan can be helpful for your healthcare team, family and friends. They can refer to your plan if they need to make decisions on your behalf, or if you’re finding something a bit tricky or overwhelming.
Having an advance care plan can also feel empowering. It’s about hoping for the best and planning for the worst. You might hear this called ‘parallel planning’ by your healthcare team. Acknowledging and documenting your wants and needs can help to keep you in control of your own care and quality of life.
We can all have an advance care plan
Anyone can make an advance care plan for themselves. It’s like making a Will or thinking about your own funeral plans. Making an advance care plan doesn’t mean you will need to use it soon. It means you are thinking about the best future care for yourself.
It's about the 'what ifs'
Lots of us worry about the ‘what ifs’ even in our normal day-to-day lives. Parallel planning is about sharing hope that your treatment will work, but also allowing time and space to talk about the ‘what ifs’. Talking about them early on can hopefully make them feel less daunting.
I did do a lot of soul searching and information gathering. I still have my 'what if' file and in a way believe it is something I had the privilege to do.
Joanna, who had a stem cell transplant to treat acute myeloid leukaemia (AML)
What is included in an advance care plan?
An advance care plan is unique to you. It can include lots of different areas of your life. Most importantly, it should include what matters most to you.
Your advance care plan can include:
- things that are important to you, or things you like doing which would improve your quality of life – your hobbies, favourite foods, and whether you prefer a bath or a shower, for example
- your favourite music - maybe to play if you need to be sedated, for example
- your religious and cultural beliefs – especially those which may affect your care
- your favourite people in your life, the people you like to be surrounded by
- photos you like of yourself, so your healthcare team can see how you like to look
- your thoughts and preferences on how you’d like your pain to be managed
- who you’d like your healthcare team to talk to if you’re unable to make decisions
- where you would like to spend your last few days before you die
- thoughts and ideas for your funeral
- instructions for where to find your important documents and passwords
- your wishes for your social media accounts.
An advance care plan is not a legal document
Your healthcare team will follow your advance care plan as closely as possible, but it is not a legally binding document. Sometimes the care you need might not be what you ideally wanted.
There are some legal documents relevant to advance care planning which may be useful to you:
Shortly before my treatment I wrote a Lasting Power of Attorney for Health and Welfare. It meant I had very honest and a little upsetting conversations with my family. It was hard but I didn’t want my family burdened with trying to figure out what I’d want if I couldn’t speak for myself or was dying. It also gave me peace of mind going into hospital. I’m relieved I did do this because I ended up sedated in intensive care for a while and that was a very stressful time for my family.
Sandra, who had CAR T-cell therapy to treat diffuse large B-cell lymphoma (DLBCL)
Who should have an advance care plan?
Anyone can have an advance care plan. Most people will only make one if they are quite unwell and are unlikely to get better, but you don’t have to wait for this to happen.
You don’t have to have an advance care plan but they can be helpful for you, your loved ones and your healthcare team.
I'm a teenager, do I need one?
It’s completely up to you whether you make an advance care plan. It can be hard to work out your likes and dislikes as a teenager at the best of times, let alone when you’re unwell.
An advance care plan might not sound that exciting, but if you do decide to make one, there are ways you can make it personal and less like admin. There’s no one right way to make an advance care plan.
Here are some ideas:
- Do some research on advance care plans – there are some links at the end of this webpage
- Record your thoughts either on paper, on a voice memo or in a video to help you process them
- Bring this topic up with your healthcare team who can answer any questions and help with any next steps
- Speak to your family, friends, or others you’re close to about what your advance care plan could include.
Teenage Cancer Trust has information on advance care plans and planning ahead which you might find helpful.
Do I need to make an advance care plan for my child?
You might find it useful to create an advance care plan for your child. It can be hard to make decisions for yourself and your loved ones when you are overwhelmed or in crisis. Having an advance care plan in place can help with any decision making.
It’s not easy thinking about future care plans for your child. It might feel hard to consider making an advance care plan. Please don’t feel rushed or pressured – just reading this information is a big step.
Your child’s healthcare team should be able to answer any questions you have. These fantastic organisations can also offer information and support:
This can feel tricky and emotional
It can be hard to think about planning for your future care no matter where you are in your treatment journey. It’s normal to feel overwhelmed. Make sure you ask for help if and when you need it, from your family, friends, healthcare team, or someone here at Anthony Nolan .
Call us on 0303 303 0303 or email patientinfo@anthonynolan.org
To talk with my wife about my wishes was a relief because it is a hard conversation to start when we both wanted to focus on optimism.
Richard, who had a stem cell transplant to treat myeloma
How can I make an advance care plan?
There isn’t one right way to create an advance care plan. It might seem like a big task so try to break it down and make it work best for you.
Marie Curie has some great tips on how to make an advance care plan . They suggest these steps:
- Think about your future, how you’d like to be cared for, and what matters most to you.
- Talk with people you’re close to about what you’re thinking and feeling.
- Record your thoughts and keep them somewhere safe.
- Discuss your plan with your healthcare team, who can support you during this process.
- Share your plan with your healthcare team and those closest to you.
Remember, you don’t have to create an advance care plan alone. You can create one with your healthcare team and loved ones. Once you’re happy with it, make sure it’s kept somewhere safe and that the relevant people have copies of it.
Hospice UK offers a free online tool called Planning Ahead which you might find helpful.
MyWishes also offers a free online tool to help you with things like writing your Will, planning your funeral, and thinking about your digital legacy.
You can change your advance care plan at any time
It’s a good idea to review it regularly to make sure it is still true to your wants and needs, just like reviewing your Will.
When is best to make an advance care plan?
You can make an advance care plan at any time. You don’t have to wait for your healthcare team to suggest it.
You might want to create one as part of preparing for your treatment, but there is never a time that is ‘too late’. It can also never be ‘too early’ as your advance care plan should be reviewed regularly.
Your healthcare team might give you an appointment with an advance care planning or parallel planning clinic. This clinic is a great opportunity for you to dedicate some time to this, ask any questions, or share any worries or thoughts you have.
Advance care planning might also be brought up in any appointments you have about prehabilitation before your treatment.
Not all hospitals have these clinics but it’s worth asking about them just in case.
Advance care planning gave me real peace of mind that I had some control even in the worst situations.
Jeremy, who had a stem cell transplant to treat non-Hodgkin lymphoma
More information about advance care planning
Citizens Advice
Citizens Advice has lots of information about death and wills. It might be tough to read if you’re thinking about your own death, but it might be useful to read the practical things that happen after someone dies. It might help you when creating your own advance care plan.
GOV.UK
The UK government website has lots of information about power of attorney, wills, and death. It can be useful to know the legal information from the government website.
Hospice UK
Hospice UK has information and support on planning your future care. They also have a Planning Ahead tool which you might find helpful.
Macmillan
Macmillan has information on advance care planning for people with cancer.
Marie Curie
Marie Curie has lots of information on planning ahead, including making an advance care plan. It includes templates and links to other helpful organisations.
MyWishes
MyWishes is a free tool to help you make plans for your future. It includes support to write a Will, safeguard your digital legacy, and plan your future health and social care.
NHS
The NHS website has information on advance care planning. They also have a tool to help you find palliative care services in your area.
The Gold Standards Framework
The Gold Standards Framework is a charity making sure every person in the UK can live well before they die. They have lots of information on their website, including about advance care planning.
Information published: 17/12/2025
Next review due: 17/12/2028