An Advance Care Plan or advance statement is a written statement that sets out your wishes, beliefs, values and preferences about your future care. It provides a guide to help healthcare professionals and anyone else who might have to make decisions about your care if you become too unwell, to make decisions or to communicate them.
Do I have to have an Advance Care Plan?
You don’t have to have an Advance Care Plan, but lots of people find that it gives them reassurance to know that they will be cared for in the way they would prefer if they become unable to make decisions or communicate their wishes.
Even close friends and family may not know how you would want to be cared for, and might worry that they are making decisions that you wouldn’t want. If you plan how you want to be cared for in advance, not only do you know that your care will be right for you, but people making decisions on your behalf will be reassured that they are following your wishes.
Once the plan is written, you can continue to make changes to it if you change your mind.
What does an Advance Care Plan include?
An Advance Care Plan can cover any aspect of your future health or social care and can include anything that’s important to you. Examples of things you may like to include in your plan are:
- 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 you want any religious or spiritual beliefs you hold to be reflected in your care.
- Which people – such as close friends or family – you would like to be involved in your care.
- Who you would like to make any decisions if there are choices to be made about your care.
- Where you would like to be cared for when you are dying (see our section on choosing where to die).
- Any practical issues you have concerns about, such as who will look after your dog if you become ill.
Can I choose to stop treatments I don’t want?
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’ (known as an ADRT for short). It lets your family, carers and health professionals know whether you want to refuse specific treatments in the future, and is only used if you are unable to make or communicate your own decisions.
You can use an Advance Decision to Refuse Treatment to set out specific circumstances in which you would not want a particular treatment to be given, or when a treatment should be stopped. This can include refusing treatments that could potentially be used to keep you alive. For example, you might to decide to refuse ventilation if you cannot breathe by yourself or to refuse antibiotics for a life-threatening infection.
An ADRT can’t include a request to have your life ended. If you are thinking about whether there may be some treatments that you would want to refuse in the future, it is worth talking it through with your health professional, who can help you understand what might happen and your different options. You may also want to talk about it with people who are important to you, and make them aware of any decisions you make.
Although you don’t need a lawyer to write an Advance Decision to Refuse Treatment, they do have to contain certain wording to be legally binding, and therefore it is best to follow a template form such as Compassion in Dying's downloadable Advance Decision Pack.
If you have put a Lasting Power of Attorney in place to make decisions about your healthcare if you are unable to, you should let them know if you create an Advance Decision to Refuse Treatment, so they can ensure that your wishes are followed.
What do I need to do to create an Advance Care Plan?
You can fill in an Advance Care Plan on your own, but you will probably find it more helpful to talk about it with you healthcare team. They know about your health and will be able to explain your likely treatment and care options, and what those options will mean for you and anyone caring for you. They can also talk to you about how realistic your preferences are and any alternatives if it isn’t be possible to meet your wishes.
For example, you may feel that you would like to die at home, but if you don’t have anyone who can support you at home, it may be more realistic for you to be cared for in a hospice. It is also important to talk about your wishes and preferences with the people who are important to you.
Although it may be difficult for you to talk together about the end of your life, and they may not agree with all the choices you want to make, involving them can help you to think through some of your options, and can help them to understand what you want, so they can follow your wishes as far as possible.
When putting together your Advance Care Plan, you may find the information on Compassion in Dying's website useful, such as their free online MyDecisions tool, which takes you through some questions and scenarios to get you thinking about what is most important to you; at the end, it generates a legal document laying out your wishes for treatment and care for you to print, sign, witness and share.
Once you have created your Advance Care Plan it will be added to your medical notes, so that anyone involved in your care is aware of your wishes. You can also carry a card in your wallet, such as Compassion in Dying's 'Notice of Advance Decision' card, which explains to medical professionals that you've made an Advance Decision and where it can be found.
Will I definitely be cared for in the way I ask?
An Advance Care Plan stating your wishes is not legally binding, but anyone who is 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 you develop a new symptom that can’t be managed at home.
An Advance Decision to Refuse Treatment can be legally binding if it is completed correctly, including being signed, witnessed and dated.
In these cases, your healthcare team will always talk with you, or the person you have nominated to act on your behalf (see the section on Setting up a Lasting Power of Attorney), about the best way to care for you in the circumstances.
Can I change my mind?
The Plan is not set in stone and you can change your mind about anything you put in your Advance Care Plan at any time. In fact it is quite common for people to make changes to their Advance Care Plan.
If you do change your mind about something, simply let your healthcare professional know, and they will ensure that any changes are written down, so everyone involved in your care knows your preferences.
This information is based on our professionals' experience of providing care, and draws on a number of expert references. Find out more about the references for our information. The information on this page applies to England and Wales.