Advance care planning

Whether you have a terminal illness, or you just want to consider your future care options, we’re here to help with more information and advice about what to include in your Advance Care Plan.

An Advance Care Plan or advance statement sets out your wishes, beliefs, values, and preferences about your care, including your medical treatment, in the future. It's a guide that healthcare professionals and others can use if you become too unwell to make or communicate decisions.

You don’t need to have an Advance Care Plan, however writing one can help you to feel reassured that you’ll be cared for in the way that you choose, should you become unable to express your needs later in life.

By making an Advance Care Plan, you can ensure your family, carers, and health professionals have the information they need if you become too unwell to tell them how you'd like to be cared for. 

Many people find that this planning gives them confidence that the care and treatment they receive will reflect their wishes, values, and beliefs.

Advance care planning can also benefit your family, carers and others who need to make decisions on your behalf too. It means they’ll know they're following your wishes and won’t worry about making decisions you wouldn’t be happy with.

It’s also important to remember that once you have written your plan, you can continue to make changes to it if you want or need to. It can evolve as you learn more about your care and what’s available to you. 

Advance care planning can cover any aspect of your future health or social care, and your plan can include anything important to you. For example, you might want to add:

• where you would like to be cared for when you are ill
• how you like to do things - for example, if you prefer a shower instead of a bath, or like to sleep with the light on
• how your religious or spiritual beliefs should be reflected in your care
• which people should be involved in your care, such as specific family members or close friends
• who you would like to make any decisions about your future care
• any practical issues you have concerns about, such as who will look after your dog if you become ill.

As part of your advance care planning, you may want to say if there are particular treatments you don’t want to have. This is called an ‘Advance Decision to Refuse Treatment’ (ADRT). It lets your family, carers, and healthcare professionals know that you want to refuse specific treatments in the future. It will only be used if you're unable to make or communicate your own decisions.

You can use an ADRT to set out the circumstances in which you wouldn't want to receive a particular treatment, or to say when a treatment should be stopped. This can include refusing treatments that could be used to keep you alive. For example, you might decide to refuse ventilation if you can't breathe by yourself, or refuse antibiotics for a life-threatening infection. It’s important to know that an ADRT can’t include a request to end your life.

If there are some treatments you may want to refuse in the future, it's worth talking this through with your healthcare professional. They can help you understand what might happen and what your different options are. You may also want to talk about it with people who are important to you and make them aware of any decisions you make.

You don’t need a lawyer to write an ADRT, but it does need to contain certain wording to be legally binding. NHS England has more information on this, as well as links to templates to help you get started. 

Many people put a lasting power of attorney in place to let someone else make decisions about their healthcare if they're unable to. If you create an ADRT, let this person know so they can make sure your wishes are followed.

You can fill out an Advance Care Plan on your own, but it may be more helpful to talk about it with your healthcare team. They'll be able to explain likely options for your care and treatment, and what that will mean for you and anyone caring for you. 

Your healthcare team can also tell you how realistic your preferences are and suggest alternatives if necessary. For example, you may feel that you would like to die at home, but if you don’t have anyone who can support you there, it may be more realistic for you to be cared for in a hospice. 

It's important to talk about your wishes and preferences with the people who are closest to you too. It can be difficult to talk about, and you may find that they disagree with your choices, but the conversation can help you to think through your options and help them to understand what’s important to you. 

NHS England outlines what the process looks like when it’s done well. You may also find Compassion in Dying's website useful. Their free MyDecisions tool takes you through questions and scenarios to get you thinking about what's most important to you. It then generates a legal document laying out your wishes for treatment and care for you to print, sign, witness, and share.

Once you've created your Advance Care Plan it should be added to your medical notes, so that anyone involved in your care is aware of your wishes. We also encourage people to ask their GP to record these preferences on their electronic files. You can also carry a card in your wallet, such as Compassion in Dying's 'Notice of Advance Decision' card. This explains where medical professionals can find details of your decision.

An Advance Care Plan isn't legally binding, but anyone making decisions about your care should take it into account. In some cases, it may not be possible to follow your wishes. For example, you may prefer to be cared for at home, but then develop a new symptom that can’t be managed there. 

An ADRT can be legally binding if it's completed correctly, signed, witnessed, and dated. In these cases, your healthcare team will always talk with you, or the person you've given power of attorney to, about the best way to care for you.

You can change your mind about anything that's in your Advance Care Plan at any time, and it’s quite common for people to do so.

If you decide you want to alter something, simply let your healthcare professional know. They'll ensure any changes are written down, so everyone involved in your care knows your preferences.