Get your free Information Pack
If you or someone you love has been diagnosed with a brain tumour and you don’t know which way to turn, start with our free Information Pack.
Planning ahead for the care and treatment you want to experience in the future can help you give you a greater sense of control during a difficult time.
Creating an Advance Care Plan (ACP) is often done as part of a Holistic Needs Assessment (HNA), shortly after your diagnosis or when you were in hospital.
It’s an opportunity to make sure your wishes about your care are known that your loved ones understand what you want to happen in the future.
An Advance Care Plan is an opportunity for you to plan, and write down, the future care and support you want and need – before you need it.
This can help make sure your wishes and priorities are respected. It’s particularly useful if there’s the possibility of developing cognitive difficulties as a result of an illness, such as a brain tumour.
An Advance Care Plan doesn’t need to be written, it can be a discussion you have with your loved ones and your healthcare team.
However, it’s helpful for the people involved in your care to have it in writing, so they can refer to it if and when they need to. It can also help prevent any confusion or misinterpretation of your wishes if, at any stage, you’re unable to communicate them.
It’s important to note that an Advance Care Plan is not legally binding. You can make one at any time and you’re free to change the plan any time you want, for example, if your needs or wishes change.
As well as details about the treatment and care you want to receive, your Advance Care Plan can include:
An Advance Decision to Refuse Treatment (ADRT) is a decision you can make now to refuse specific treatments in specific situations in the future. It lets your healthcare team (and your family) know your wishes in case you’re unable to tell them at the time.
An ADRT is also known as an advance decision or a living Will and is legally binding as long as it’s:
A Lasting Power of Attorney (LPA) is a legal document that gives someone you trust the power to make decisions about your care for you, if there comes a time when you’re unable to make them yourself.
Discussing your wishes with the person beforehand or creating an advance care plan will make sure they understand your preferences and can act accordingly.
LPAs can also be used to give someone the power to make decisions about your finances. This can prevent hassle at a later date if you need to transfer utility bills or convert bank accounts.
An advance statement is a general statement about anything that’s important to you, rather than specifically about your care – they are also known as statements of wishes. An advance statement is not legally binding, but people involved in your care must take it into account.
The sort of things you may want to include are:
Writing a plan for the care you want at the end of your life and what you want to happen after your die can be a positive thing to do and can give you some control at this difficult time.
Having an Advance Care Plan helps make sure everyone knows your wishes and things can be put in place for your care to run smoothly. This can help to prevent, for example, unwanted admissions to hospital.
It can also prompt the difficult conversations around symptom management, organ donation and details about your funeral. You may want to visit a hospice to get a feel of the place and the staff, or investigate having hospice care at home.
Some things are only possible with planning, such as closing your social media accounts, or deciding to donate your brain for research.
For LBTGQ+ people, there can be some anxiety about having your wishes respected when it comes to end of life care. Stonewall, Opening Doors London and Compassion in Dying have created a guide to planning ahead for the LGBTQ+ community to help ease those worries. help
After writing an Advance Care Plan, you should:
Actions to take
Questions to ask
Resources to explore
Actions to take
Questions to ask
Resources to explore
Your Advance Care Plan can include anything that’s important to you, no matter how small or trivial it seems. It can also take into account your religious beliefs and any cultural factors that may affect how you would like to be cared for.
You can also include the ‘bigger’ decisions, such as:
If you haven’t been offered a holistic needs assessment (HNA), this can be a great place to start your Advance Care Plan.
This a discussion with someone from your healthcare team that looks at your physical, psychological, spiritual and social needs – now and in the future. It looks at you, the individual as a whole, not just your illness.
How much you share is up to you, but this discussion can be used to inform your Advance Care Plan.
If you would like to refuse a particular treatment, it’s recommended that you speak to an experienced healthcare professional for advice, so you can make an informed decision.
You may also like to put this decision into a written Advance Decision to Refuse Treatment (ADRT).
Your Advance Care Plan can be changed whenever you like, but it can be helpful to include details of when you’d like to review it. For example, when you’re beginning a new treatment, if your circumstances change or as you’re approaching the end of life.
Ultimately, you have the deciding say in your care but you can use your Advance Care Plan to indicate who you’d like to be included in discussions about your treatment and care.
It’s also up to you who has access to your Advance Care Plan. However, it would help your wishes to be respected if anyone involved in your care has access to them. This could include your healthcare team, your family and friends
There are many practical issues that you may want to take care of in advance, in case you feel too fatigued during or after treatment. Obviously, you can’t plan for every scenario but putting measures in place to help manage the things that matter most to you can make you feel more in control of the situation.
For example, you may want to convert any separate bank, savings or share accounts into joint accounts with your partner (or a loved one) or transfer any utility bills into their name. It may be helpful to arrange for somebody to look after your pets or water your plants if you become too ill to do so.
Creating a Lasting Power of Attorney (LPA) is the only way to give someone the legal power to make health or care decisions on your behalf.
It’s also the most-effective way to give someone control of your finances and can help avoid a lot of hassle in the future when dealing with banks or utility companies.
If you get to the stage where you’re nearing the end of life, what do you want to happen?
Making plans for what you want to happen after you die can help you feel more in control of your situation. Your Advance Care Plan can include details of where you’d like to die and what sort of funeral you want. It’s also important about if you’d like to donate your brain to research or become an organ donor.
Jess La, a Neuro-oncology Clinical Nurse Specialist (CNS), answers some of the questions we get asked about advanced care planning.
An Advance Care Plan means you’re able to take a bit of time to think about what you want from your care and research what’s available – instead of making a choice under pressure if a decision suddenly has to be made.
Once you’ve made the important decisions and put measures in place, you don’t need to worry about them. You can then spend your time with your family and friends, focussing on your and their feelings and needs.
It’s especially important for people living with a brain tumour, as there’s a possibility of experiencing cognitive difficulties. Having an Advance Care Plan means you’re able to make your own decisions rather than others making them for you.
Of course, not everyone will want to make a plan – you may not be ready to face this at the beginning, shortly after your diagnosis, when you’re struggling with fears and uncertainty about the future. And you may find that you don’t want to face it at any time.
Remember, you don’t have to make an Advance Care Plan – they’re entirely voluntary!
Your healthcare team may approach you about writing an ACP, but if not, you can ask them about it. Remember, it’s entirely your decision about whether to make an ACP.
A member of your healthcare team will talk you through the process and make a written record of your decisions. You can explore your options with your healthcare team, so don’t be afraid to ask them lots of questions.
You may also like to involve your family and friends - if you want to. Your healthcare team will also record who you’re happy to share the plan with and whether the plan can be transferred to others if your care provider changes.
You can make your own ACP if you prefer, but it’s still useful to discuss this with your healthcare team as they can help to make sure you don’t forget anything.
You can ask about advance care planning at any time, whenever you’re ready to think about these things. However, there are advantages of doing it earlier rather than later.
If you experience any cognitive difficulties that might make decision-making difficult, you’ll have already put plans in place for the care you would like.
Having an Advance Care Plan means others will know about your wishes and these are more likely to be followed if you’ve written them down.
If a lot of the decisions surrounding your care have already been made, you don’t need to worry about them and can concentrate on yourself and your family.
All members of your healthcare team will work with you and your family to make sure your Advanced Care Plan is carried out as appropriate.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community - Join our online support groups.