Creating an Advance Care Plan

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.

What is an Advance Care Plan?

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:

Advance Decision to Refuse Treatment

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:

• written down
• signed by you
• signed by a witness.

Make the right choices for you

Our Step by Step interactive guide outlines what happens following a diagnosis, to answer your questions and help you to understand what to expect.

Read our guide

Lasting Power of Attorney (LPA)

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.

Advance statement

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:

• food preferences
• religious or spiritual beliefs
• whether you prefer to have a bath or a shower
• if you like to sleep with the light on.

Why do I need an Advance Care Plan?

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

What can I include in my Advance Care Plan?

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:

How might your needs change in the future? And what do you want to do about this?

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.

Is there any treatment that you don’t want?

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).

When or how often would you like to review your plan?

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.

Do you want to involve your family and friends in making your plans?

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

What practical issues can make things easier for you now, and at a later date?

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.

Who makes decisions for you, if you’re no longer able to make them yourself?

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.