Planning your care in advance

Advance care planning is the process of making decisions about what kind of care you'd like to have in the future. This can help make sure anyone looking after you knows what matters to you. Here, we talk about what you can include in an advance care plan, how it will be used, and how you can make one.  

On this page:

What is advance care planning?

Advance care planning means having conversations with your healthcare team and making decisions about the care you'd like in future. Planning ahead can help make sure your wishes are still followed if you're unable to make or express your decisions in the future.

Planning your care in advance makes it more likely that your wishes will be understood and followed. But, it's not legally binding, and there could be circumstances when doctors or nurses do not follow the wishes you've recorded. For example, you may wish to be cared for at home. But the type of care you need means you might mean you need to be cared for in a different place, such as a hospice.

In Scotland, planning your care in advance is called future care planning or anticipatory care planning. In Wales, planning your care in advance might be called future care planning. On this page we use 'advance care planning' as a general term, but it's relevant for people in Scotland and Wales too.

What to include in an advance care plan

Asking yourself, 'what matters to me?', can help you plan for the future. Knowing what matters most and sharing your wishes can help you feel supported in your decisions.

You can include any information that's important to you in your advance care plan. Some examples of decisions you might like to think about are:

• how you would like to be looked after
• where you would like to looked after when you are less well
• where would you like to die
• any spiritual or religious beliefs you would like taken into account
• who you want to spend time with
• who your doctors or nurses should talk to if you're unable to make or tell people about your decisions
• how you would like practical matters dealt with, such as the care of a pet
• what you would like to happen to your body after you die
• if you've considered organ donation - read more about donating organs and tissue on the NHS Blood and Transplant website.  

Having conversations with your healthcare team and those closest to you, will help them understand what's important to you. Talking to the people supporting you can also help you understand what your future care might look like.

If you're on gender identity-related hormone therapy

If you're trans, non-binary or gender queer and are on hormone therapy, you might want to include your treatment wishes in your plan. You might worry about whether you can have your hormone therapy alongside other treatment. You might also think about how you can take your hormones if you become more ill, or if you're staying in a different place.

Speak to a healthcare professional you trust about any concerns you have around this. They can help make plans for your future care. They may also be able to look into different options to meet your needs. For example, switching from tablets to a gel or patch, if you have problems swallowing.

If your doctor or nurse does not have experience with this, they can speak to a gender identity specialist. A healthcare professional can record your wishes in your advance care plan with your permission. This will be looked at by professionals providing your care.

How to make an advance care plan

Making an advance care plan can seem like a big task. You might find it helpful to think of it as recording what matters most to you. You can then share this with the people supporting you.

Follow these steps to make your own advance care plan.

Think

Think about your future. What do you want or not want to happen?

This might include decisions about where you'd like to be cared for, or where you would prefer to die.

It can also include things that matter most to you. This might be how you like to do things, for example, if you prefer a bath or a shower. It can also include anything you'd like the people looking after you to know. For example, if you have any dietary requirements or preferences.

It's your choice whether you make an advance care plan. You should not feel pressure to include anything you're not comfortable with.

If you're not sure what to include, try talking with people who know you best.

Talk

Talk with the people important to you. It can be helpful to include them in this process, so they're aware of what you'd like.

If there's more than one person supporting you, it could be helpful to talk to each person, so they all know what your preferences are.

Record

Record your thoughts and create your own advance care plan.

There is no set template for making an advance care plan. You can record your wishes in a way that suits you. Some people choose to write their wishes in a document called an advance care plan, or advance statement. If you live in Scotland or Wales, this might be called a future care plan. Writing down your wishes can make it easier for people to understand and follow them in the future.

Keep your advance care plan somewhere safe. Let the healthcare professionals involved in your care know where they can find it. It's helpful to let the people important to you know where they can find it too.

Would you prefer to follow a template? Take a look at advance care planning forms, tools and templates here.

Discuss

Discuss your plans with the healthcare professionals involved in your care. They can help you understand what sort of care you might need in the future, so you know which decisions to include.

They might be able to provide you with a form to fill in. Or, they might be able to sign some documents or decisions.

Share

Share information about your plans with the people who need to know. Make sure it's recorded in your healthcare records.

Your doctor or nurse can tell you how to make sure other health and social care professionals know about your advance care plan. They might be able to create an electronic record of your plan that could be accessed by hospital staff or out-of-hours doctors. These services vary depending on where you live.

If you have a carer or someone who looks after you, give them a copy or tell them where you keep your advance care plan.

Read more about digital healthcare records where you live:

• England – Summary Care Records  
• Northern Ireland – Northern Ireland Electronic Care Record (NIECR)  
• Scotland – Key Information Summary  
• Wales – Individual Health Record  

Advance care plan forms

Ask your healthcare professional for an advance care planning form. Some NHS Trusts or GP surgeries will have these available on their websites. You could also try:

Changing your advance care plan

You can change your plan at any time. It's a good idea to review your plan regularly to make sure it still reflects your needs and wishes. Just make sure to update any relevant documents and copies if you do make changes.

Planning for emergencies

You can plan what you'd want to happen in an emergency, for example if you become suddenly unwell with an infection or a stroke.

One way to plan for this is by using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process.

The ReSPECT process helps people decide what care they would like in a medical emergency. This process is not used in all areas of the UK. Check whether this is used in your area by asking the healthcare professionals supporting you.

Discuss your options with your doctor or nurse and those important to you.

You could discuss a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision, and whether you would want to go to hospital for treatment. This can be recorded in a ReSPECT plan. Read more about DNACPR decisions.

Write your preferences in a ReSPECT plan so that the healthcare professionals looking after you know what you'd like.

Read more about the ReSPECT process on the Resuscitation Council UK website.

Advance decision to refuse treatment

An advance decision to refuse treatment (ADRT) is a written decision to refuse a specific type of medical treatment. It's sometimes called an advance decision or living will.

An ADRT can be part of your advance care plan, but you need to write it in a certain way.

An ADRT will only be used if you lose the ability to make your own decisions about your treatment.

In England and Wales, an ADRT is legally binding under the Mental Capacity Act 2005. Your doctor or nurse has to follow your ADRT as long as it's valid (written and signed in the correct way) and applies to your current situation.

If you have a health and welfare Power of Attorney, or are thinking about making one, it's important to think about how this will work with an ADRT. Whichever was made most recently could take priority over the other. A legal professional will be able to help with this. Go to Who can help with advance care plans?

Things you can include in an advance decision to refuse treatment

In an ADRT, you can:

• say which treatments you do not want
• say in which circumstances you want to refuse treatment
• refuse treatment that could potentially keep you alive, such as a mechanical ventilator to help you breathe.

Treatment that could potentially keep you alive is also called 'life sustaining treatment' or 'life prolonging treatment'.

In an ADRT, you cannot:

• refuse care to make you comfortable, like keeping you warm, clean, safe, and giving you food and water by mouth
• request help to end your life.

How to make an advance decision to refuse treatment

You might like to speak to a doctor or nurse who knows your medical history. They can help you write down which treatments you wish to refuse and in what circumstances.

You'll need to make sure the decision is:

• written down
• signed by you
• signed by a witness (if you want to refuse life-sustaining treatment).

You need to share your ADRT with your healthcare professionals so they know what treatments you do not want to receive.

Do not attempt cardiopulmonary resuscitation (DNACPR or DNAR) decisions

Cardiopulmonary resuscitation (CPR) is a treatment that aims to start breathing and blood flow in people who have stopped breathing or whose heart has stopped beating.

Some people decide they do not want to have CPR. CPR is not beneficial for everyone, and can sometimes cause serious complications . Ask your doctor or healthcare team to explain what these might include.

If you do not want to have CPR, you can tell your doctors or nurses. This is called a do not attempt cardiopulmonary resuscitation (DNACPR) decision or DNACPR order.

If you have not made a DNACPR decision or order, your doctor or nurse will decide whether CPR is in your best interest.

If they know CPR would not work, you cannot ask to have CPR. The people close to you cannot request CPR for you either. If CPR is a realistic treatment option, the healthcare team will make a shared decision with you about what's best.

Read more about DNACPR recommendations on the Resuscitation Council UK website.

If you're unable to make or express decisions for yourself in the future

Some people lack mental capacity. This means they are not able to make or express decisions for themselves. This could be because they're not conscious, or they have a condition that affects their memory or thinking. It might be temporary or long-term.

Read more information about mental capacity.

Your healthcare team will try to follow any wishes you're able to communicate, or that you've discussed or recorded in the past.

There are some planning tools that are designed for people who might find it harder to make and express decisions. They are sometimes called EasyReads. Go to advance care plan forms for some examples of these tools.

If healthcare professionals are not sure what you'd like, they'll ask the people important to you what they think your wishes would be. This will help professionals make decisions about your care, based on your best interests.

It's a good idea to tell professionals:

• who is important to you
• who you want to be involved in decisions about your care.

This might be especially important if your healthcare professionals are not aware of the significance of your relationships. You might also want to tell healthcare professionals who you do not want to be involved in decisions about your care.

The people close to you will not be able to legally make decisions about your care, unless they are appointed to do so.

If you want to choose someone to legally make decisions for you, you might want to consider making a health and welfare Power of Attorney. This means the person or people you choose, can legally make decisions for you. And, healthcare professionals will involve them in decisions about your care.

Read more about making a Power of Attorney.

Who can help with advance care plans?

Making decisions about your future care can feel overwhelming. There are professionals who can help you understand your options and put plans in place.

Your healthcare professionals should be able to explain what your future care could look like, and what options you have. This might be your doctor, nurse, or another healthcare professional.

Legal professionals can help with writing your wishes in a legal and valid format. For example, you might consider legal support if you'd like to make an advance decision to refuse treatment or a Power of Attorney. Legal professionals can also support with making other plans for the future, such as making a Will. Read more information about making a Will.

Spiritual advisers or faith leaders could help if you'd like to ask spiritual questions.

Counsellors, psychologists, or other mental health professionals could help if you'd like support with your emotional wellbeing.

If you'd like to talk to someone about how you're feeling, or get more information about planning ahead, you can contact the free Marie Curie Support Line by email, phone or webchat. Call the Support Line on 0800 090 2039* or email support@mariecurie.org.uk

Useful websites

NHS – Universal principles of advance care planning  
NHS – Making a plan for your health and care if you become very ill (Easy Read)  
MyWishes – Advance care plan software  
Advance care planning – Planning ahead online tool  
NHS inform Scotland – Future care planning video  
Open University Open Learn – Advance care planning video  
NHS Blood and Transplant – Organ donation and transplantation