Advance care planning

Advance care planning is a way for someone to express and document how they wish to be cared for as their illness progresses. Planning ahead can help you and other healthcare professionals understand what's important to the person and care for them in a way they'd like. You should be ready to talk to people about their wishes and support them to make an advance care plan.

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Advance care planning is a process of thinking, talking, recording and sharing. It includes making decisions about personal issues and medical issues.

In Scotland, advance care planning is called anticipatory care planning or future care planning. In Wales, advance care planning can also be called future care planning.

When someone has a terminal illness, they may have to make a lot of decisions about what happens to them in the future. This includes decisions on:

People may also wish to make decisions about their Will, what they want to happen at their funeral and what happens to their body after they die.

As someone’s illness progresses, they might become unable to make or express these decisions for a period of time, or permanently. This is known as losing mental capacity.

Advance care planning means that the person can communicate what’s important to them. So, if they do become unable to make or express their decisions, the people around them know what they'd prefer and can respect their wishes.

There are lots of things you can do to help someone make an advance care plan. Any health and social care professional can help someone with advance care planning. You do not need to be a specialist.

Ask the patient what they’ve got in place already. Find out what processes are in use in your local area that will work for the patient. Make sure their wishes are recorded and shared so they can be acted on if, or when, they’re required.

Advance care planning can have several benefits:

Some professionals worry about speaking about advance care planning with patients. You might feel like avoiding it in case the conversation causes distress, or brings up fears about the person's condition.

Talking about future care plans can be an emotional topic for the patient, those important to them, and you as a healthcare professional. Some people might not feel ready to talk about their future care, especially if it includes making plans for when they die.

If you're unsure if a person would be open to advance care planning, try talking to someone close to them, or to other healthcare professionals involved in their care. Consider some of the options below for introducing topics slowly and respectfully.

Try not to force anyone into talking about advance care planning. Let them know you are there if they want to talk, whenever they feel ready.

The benefits of advance care planning are not just for people who will lose capacity in the future. For many people, thinking about what's important to them can help them to feel more in control, at peace, and able to live life as fully as possible until they die.

It also gives people the chance to ask questions about what might happen in the future so they can feel more prepared.

Encourage the person to think about what they would like to happen in the future. This includes what their wishes and preferences are for the type of care they want.

You might find it helpful to share our resources with them, including:

We have a booklet for LGBTQ+ people that addresses some of the specific concerns someone might have when planning their future care. Download or order the free booklet.

If you're showing the person an information website or giving them a booklet, give them time to read and understand the information. It might be helpful to give them the information and come back to the conversation another time.

Approach these conversations sensitively. If they are not ready for the conversation yet, you can always let them know that you're ready to talk about it if they change their mind.

The person might give you some cues or signs that they're starting to think about what happens if they become more unwell. This could include talking about:

You can respond to these cues and start a conversation about advance care planning.

The three main questions to think and talk about are:

You might like to use the 'what matters most' approach to help start conversations. This approach focuses on what matters most to the person to help tailor their care in a personal and holistic way.

Below, we've listed some things to keep in mind when talking about advance care planning.

Give the person time to consider the question. Do not be afraid of silence. This usually means the person is thinking about their answer.

Be careful not to lead them into making any decisions they're not comfortable with. You do not have to talk about everything at once. Making big decisions can be tiring. Let them know that you can talk about advance care planning over several shorter conversations if they prefer.

People should be given time to discuss their plans with those important to them. They might have already had these discussions. If not, they might find it helpful for you to be present when they speak to them.

Try to be open and honest with the person and those close to them. For example, even if they plan to be cared for in a certain place, it might not always be possible to arrange it. Manage expectations to avoid disappointment.

Make sure you record any conversations you have about advance care planning in the person's notes. This means there's a record of the person's wishes for other professionals to follow.

Use their words as much as possible. Ideally, this record should be written with the person so that you are both happy that it's a good reflection of any discussions that have taken place. Ask the person to read it and check they agree with it.

Some areas might use a formal document to record a person's wishes. Go to the Useful links section below to find out what's used in your area. Or ask your colleagues which forms they use.

A person can update or change an advance care plan at any time. Encourage the person to review their plan regularly. It's important to make sure it still reflects their wishes. Document and share any changes.

If the patient has an advance decision to refuse treatment in place, or has a Power of Attorney, review these decisions alongside reviewing their advance care plan.

If someone has capacity, they should be involved in all the decisions about their care, whether or not they have an advance care plan.

When someone does not have the capacity to make or express those decisions, and they have a lasting (or welfare) Power of Attorney in place, the appointed person should be asked to make decisions on the person's behalf.

When someone cannot make or express decisions, and they do not have a lasting Power of Attorney, you and other health and social care professionals involved in their care will make decisions on their behalf. Family and friends (sometimes called 'next of kin') will be involved in decisions, but they will not be asked to make decisions on the person's behalf.

Decisions made on the person's behalf by health and social care professionals are sometimes called best interest decisions.

Sometimes a person can be appointed by a court to make decisions on someone's behalf after they have lost capacity and there is no lasting Power of Attorney in place. In England and Wales this is called a 'deputy', in Northern Ireland it is called a 'controller' and in Scotland it is called a 'welfare guardian'. Be aware, this can be a hard and expensive process.

If you're unsure about how to support someone with advance care planning, ask for help from more experienced colleagues. You could also read the guidance for your area in the Useful links section below.

If someone has questions about their illness that you cannot answer, it might be helpful for them to speak to their doctor or specialist nurse.

If they'd like legal support, they might like to speak to a solicitor or legal adviser. This could be helpful if they'd like to make an advance decision to refuse treatment, or appoint a Power of Attorney.

If they're distressed or anxious, speaking with a psychologist or counsellor may help them to explore their thoughts and feelings. These professionals might be able to help the person find ways to manage them.

They might also wish to speak to a chaplain, spiritual adviser or faith leader to discuss spiritual issues.

A social worker can help with practical issues such as finances.

If you're unsure about how to follow someone's advance care plan, speak to your manager or the medical team looking after the person.