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Posted by Jenny Steele, on September 6 2019 in: Blog

Advance Care Plan (ACP)

Do you know what an Advance Care Plan is? Do you need one? Do you have one?

What is an Advance Care Plan (ACP)?

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 is a documented guide for healthcare professionals and anyone else who might be in a position to make decisions about your care in the event that you become too unwell to communicate or make decisions.


Do I need an Advance Care Plan? 

ACPs aren’t required, but many people find it reassuring to know that they have recorded the way they wish to be cared for. If you plan 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. Even close friends and family may not know how you would want to be cared for and might worry that they are making the right decisions for you, but having an ACP in place lessens the burden and anxiety on our loved ones.


What does an Advance Care Plan include?

An Advance Care Plan can cover any aspect of your future health or social care. It where you record anything that’s important to you. For example, some things you may like to include are:

  • Personal comfort: if you prefer a shower instead of a bath, or like to sleep with the light on
  • Spiritual preferences: any religious beliefs you hold and want to be reflected in your care
  • Support: name people – such as close friends or family – you would like to be involved in your care
  • Appoint a decision maker: state who you would like to make any decisions if there are choices to be made about your care.
  • Preferred place: where you would like to be cared for when you are dying
  • Practical issues: anything you have concerns about, such as who will look after your dog if you become ill


What do I need to do to create an Advance Care Plan?

Currently there is no definitive form. You can find a variety of versions, all free downloads, offered online from cancer trusts, charities and local health authorities.

While you can complete an Advance Care Plan on your own, it is helpful to talk about it with a healthcare professional who you know. They will be aware of any current issues, be able to explain care options and talk to you about how realistic your preferences are.


Also, it’s important to talk about your wishes and preferences with the people who are closest to you. Although it can be difficult to talk about the end of your life, and others may not agree with all the choices you want to make, involving them can help you to think through your options and help them to understand what you want, so they can follow your wishes as far as possible.


Where can I find support for creating my Advance Care Plan?

Compassion in Dying’s website has two very useful tools for creating an Advanced Statement (ACP) and an Advanced Decision (ADRT – See below for more information about this). Both tools prompt you to consider some questions and scenarios that will help you identify what’s most important to you. When you are done, it generates a legal document which states your wishes for treatment and care for you to print, sign, witness and share. (See link at the bottom of this article)


Once you have created your Advance Care Plan you can have this added to your GPs 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’) which highlights to medical professionals that you’ve made an Advance Decision and where it can be found.


Will I definitely receive the care I request?

An Advance Care Plan (ACP) is not 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 die at home, but you develop a new symptom that can’t be managed at there and have to be transferred to a hospice.


An Advance Decision to Refuse Treatment (ADRT) can be legally binding if it is completed correctly, including being signed, witnessed and dated.


Your healthcare team will always talk with you, or the person you nominated to act on your behalf, about the best way to care for you in the circumstances.


Can I change my mind?

Yes. It’s common for people to make changes to their Advance Care Plan. As your circumstances and preferences change, so may your wishes. Just remember that if you do change your mind, let your healthcare professional know so they can update your plan. Also, speak to those closest to you so that everyone who may be involved in your care is kept up to date.


Can I choose to stop treatments I don’t want?

As part of your care planning, you may wish to specify 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 healthcare professionals know whether you want to refuse specific treatments 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, so it is best to follow a template.