Tools & Guides

Advance care planning (ACP)

An advance care plan (ACP) sets out the wishes, beliefs, values and preferences for a person’s future care. It provides a guide to help health and social care professionals to make decisions if the person becomes too unwell to make them for themselves or to communicate them.

What’s an advance care plan?

An advance care plan sets out the wishes, beliefs, values and preferences for a person’s future care. It provides a guide to help health and social care professionals to make decisions if the person becomes too unwell to make them for themselves or to communicate them.

Not everyone will want to make an advance care plan, but it may be especially relevant for:

  • People at risk of losing mental capacity e.g., through progressive illness.
  • People whose mental capacity varies at different times e.g., through mental illness.

What does advance care planning cover?

An advance care plan can cover any aspect of a person’s future health or social care needs and can include anything important to that person.  

This could cover things like:

  • How they prefer their personal care to be provided
    E.g., if they prefer a shower instead of a bath, or want to be fed with a fork, not a spoon.
  • Religious or spiritual beliefs the person holds that they want to reflect in their care
    E.g., reading religious texts.
  • Which people they would like to have involved in their care or not
    E.g., friends and family.

Remember, this can work both ways and there can often be sensitivities in these decisions that you and your staff will need to be aware of and manage carefully. The person may also need help to communicate during these discussions.

Support might include:

  • Communication aids
  • Advocacy
  • Interpreters
  • Specialist speech and language therapy
  • Involving family members or friends.

If choices need to be made about their care in the future and the person may not then be in a position to make them, then the person can specify whom they’d like to make those decisions or choices now.

It might include where they would like to be cared for when they are dying or who they want to look after a pet.

Advance decisions to refuse treatment (ADRT)

As part of their advance care planning, a person may want to say if there are particular treatments they don’t want to have or when they’d like certain treatments to be stopped - this is an advance decision to refuse treatment (ADRT).

This can include refusing treatments that could keep somebody alive. For example, a person might refuse ventilation if they can't breathe by themselves or antibiotics for a life-threatening infection. It can also include do not attempt cardiopulmonary resuscitation (DNACPR) orders. However, an ADRT can’t detail a request to end somebody’s life.

If a person is thinking about whether there may be some treatments that they would want to refuse in their future, it’s worth talking it through with a health professional, who can help them understand what might happen and their different options. The person may also want to talk about it with people who are important to them and make them aware of any decisions they make.

Although a person doesn’t need a solicitor to write an ADTR, they do have to contain certain wording to be legally binding. If the person has put a lasting power of attorney (LPA) in place to make decisions about their healthcare if they’re unable to do so, they should know about the ADTR and carry out the outlined wishes.

Writing an advance care plan

It’s worth noting that a solicitor isn’t needed to write an advanced care plan. However, the document itself isn’t legally binding.

If you’re helping somebody outline their care plan, try and record the conversation and the decisions made, checking that there is no misunderstanding with any wishes. A written copy of the plan can then be made and dated.

Consent to share information

Once the person has created their advance care plan, you’ll have to ask for their consent to share this with other health and social care professionals. Once you’ve gained this, it’ll be added to their medical notes so that anyone involved in their care is aware of their wishes.

It’s worth mentioning that if the person changes care provider, you’ll have to transfer this to their new organisation.

Reviewing the plan

The advance care plan should be reviewed whenever treatment or support is being looked at, while the person has capacity. It may be helpful to involve a healthcare professional at this stage as well to explain treatment options.

Make any changes requested, making sure you update any copies.

Making changes for end-of-life care

If a person is nearing the end of their life, ask if they would like to review their plan or develop one if they haven’t already.

Although it may be difficult for family members to talk about the end of their loved one’s life and they may not agree with all the choices the person wants to make, involving them can help the person to think through some of their options and can help loved ones to better understand what they want, so they can follow their wishes, as far as possible.

Making general changes

Plans aren’t set in stone and the person can change their mind about anything they’ve decided on – it's quite common for people to make regular changes as their health does.

If the person does change their mind about something, make sure your records are updated and don’t forget to let their healthcare professional know so that they can ensure that any changes are written down. This way, everyone involved in their care knows their preferences.

Carrying out the plan

An advance care plan isn’t legally binding, but anyone who’s making decisions about their care should take it into account.

In some cases, it may not be possible to follow wishes. For example, a person may prefer to be cared for at home, but they might develop a new symptom that can’t be managed in this setting.  

However, an ADTR can be legally binding if it’s completed correctly, including being signed, witnessed and dated.

Further information

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