Advance care planning
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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.
On this page:
Key points
- Advance care planning is a way for someone to express what’s important to them in case they become unable to communicate their wishes and make decisions in the future.
- Any health and social care professional can help someone with advance care planning by talking to them about their wishes. You do not need to be a specialist.
- Having an advance care plan lets you and other professionals involved in the person’s care know their wishes and preferences. This means you can care for them in the way they'd like.
- There are different processes and forms that can be filled out to make an advance care plan.
What is advance care planning?
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:
- what treatment might or might not benefit them
- what treatments they would not want
- how and where they would like to be cared for
- where they would prefer to die.
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.
Read about supporting someone who does not have mental capacity.
How can I support someone with advance care planning?
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.
If a healthcare professional known to the patient introduces the concept of advance care planning, there's a much greater uptake than if they're referred to a service without discussing it first.
What are the benefits of advance care planning?
Advance care planning can have several benefits:
- It allows the person to have choice and control over what happens to them.
- It reduces the chance that someone receives care or treatment they do not want.
- It can make it more likely that someone's wishes are known and followed. For example, they may be more likely to die in their preferred place of death.
- It can lessen the burden on people close to the person, who may otherwise need to be involved in decision making without knowing what the person wanted.
- It can allow the person to think about who's important to them and who they'd like to help them make decisions.
Common fears about advance care planning
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.
Talking about advance care planning
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:
- online information on planning ahead for the public
- planning ahead checklist to use online, download or print out
- online information on advance care planning for the public
- a free booklet, Planning ahead.
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.
Read more on how to talk to someone about dying.
Listen for cues
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:
- what might happen to the people important to them when they die
- not wanting to go into hospital for treatment if they become more unwell
- not getting better
- what happens when they die
- what happens to their body after they die
- spiritual and religious practices that are important to them.
You can respond to these cues and start a conversation about advance care planning.
Start the conversation
The three main questions to think and talk about are:
- What do you want to happen in the future?
- What do you not want to happen in the future?
- Who do you want to speak for you if you cannot speak for yourself?
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.
Be patient
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 ready to talk about it in short conversations
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.
Give them time to discuss with others
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.
Be realistic
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.
Record the person's wishes
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 to find out what's used in your area. Or ask your colleagues which forms they use.
Types of planning
Advance statement or advance care plan
This is a record of the person's wishes and preferences about their care. It may include information on their preferred place of care and preferred place of death.
It might also include personal care needs, such as dietary preferences or religious and spiritual practices.
It's not legally binding, but should be taken into consideration if the person becomes unable to communicate their wishes.
There's no set template for advance care plans in England, Scotland and Northern Ireland. It can be recorded in whichever way suits the person best. In Wales, there are specific forms you can fill in. Go to the Useful links section.
Read guidance on how to record an advance care plan on the NICE website.
Advance decision to refuse treatment (Advance Directive)
An advance decision to refuse treatment (ADRT) is a legal record of any treatments that a person does or does not want to receive in a specific situation. For example, they may decide that they do not want to be admitted to hospital if they get a chest infection. It must be legally upheld in England and Wales.
For an ADRT to be legal and valid, it must be written in a certain way. The specific treatments a patient wishes to refuse need to be stated, and in what circumstances their refusal will apply. It's best to seek advice from a doctor or specialist nurse if your patient wishes to create an ADRT. The patient may also wish to seek legal support.
Patients cannot refuse care to make them comfortable or request help to end their life.
There is no legal equivalent in Scotland or Northern Ireland. This means decisions to refuse treatment are not protected by law. But a patient can make an 'Advance decision', 'Living will' or 'Advance Directive' which should be taken into consideration by healthcare professionals.
Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR)
Some people may not want to receive cardio-pulmonary resuscitation (CPR) if they have a cardiorespiratory arrest. This can be recorded in a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) form. This form is also used to document when CPR should not be attempted, because it would not work for the patient.
These forms do not need to be signed by the patient. You should be able to get a DNACPR from your workplace.
Recommended Summary Plan for Emergency Care and Treatment (ReSPECT)
Some areas are now using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process for people to document their wishes in case of a medical emergency. ReSPECT forms do not need to be signed by the patient.
DNACPRs can be recorded in ReSPECT forms, if they're used in your area.
Check if your area is using ReSPECT forms. Ask your colleagues if you're not sure how or what to record in it.
Find out more about ReSPECT forms and what's included in them on The Resuscitation Council website.
Power of Attorney
A Power of Attorney is someone who is legally appointed to make decisions on behalf of someone else. A lasting Power of Attorney can continue to make decisions for the person if they lose mental capacity. This is known as a continuing Power of Attorney in Scotland and an enduring Power of Attorney in Northern Ireland.
A lasting Power of Attorney is usually someone close to the person such as a family member or close friend. But it can also be a solicitor, accountant or firm.
There are different types of Power of Attorney:
- For financial and property decisions, this is known as a lasting Power of Attorney for financial affairs in England and Wales, continuing Power of Attorney in Scotland and enduring Power of Attorney in Northern Ireland .
- For health and welfare decisions, this is known as a lasting Power of Attorney for health and care decisions in England and Wales and welfare Power of Attorney in Scotland. It's not currently available in Northern Ireland.
Share our Power of Attorney information for the public with your patients.
Why should advance care plans be updated regularly?
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.
Film: What matters to me?
Asking the question, "what matters to me", can help patients plan for the future and make decisions about the care they would like. Watch this video to find out about the difference that having conversations about the future can make, and how these conversations can help improve care for your patients. There's also information about how to start these conversations.
What happens if someone does not have an 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.
Read more about mental capacity.
When should I ask for help?
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. Go to Useful links.
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.
Useful links
Advance care planning for adults with learning disabilities – The Victoria and Stuart project
Alzheimer's Society – This is me template
Gold Standards Framework: Advance Care Planning
MacIntyre 'My plan before I die' – EasyRead
No Barriers Here – aims to improve advance care planning conversations and address inequalities in end of life care
Resuscitation Council (UK) ReSPECT
What matters conversations – 2020 charter
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
