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Advance Care Planning

An initial guide to getting them right

Stuart Prince

Stuart Prince
Special Advisor at Age UK

What is an Advance Care Plan?

An Advance Care Plan is one that 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 (and anyone else who might have to make decisions about their care) 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 – for example, through progressive illness.
  • People whose mental capacity varies at different times – for example, through mental illness.
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Advance care planning can make the difference between a future where a person makes their own decisions and a future where others do.

Staff should receive training on advance care planning before discussing it with people they support.

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 include things such as how they prefer their personal care to be provided. For example, if they prefer a shower instead of a bath, or want to be fed with a fork, not a spoon. It can include any religious or spiritual beliefs the person holds that they want to reflect in their care. It can include which people – such as close friends or family – they would like to have involved in their care – or not – remember, this can work both ways and there can often be sensitivities in these decisions that 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 support
  • 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 who they would 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.

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Advance Decisions to refuse treatment ADRTs

As part of their advance care planning, a person may want to say if there are particular treatments they don’t want to have. This is called an ‘Advance Decision to Refuse Treatment’ (known as an ADRT for short). It lets their family, carers and health professionals know whether the person wants to refuse specific treatments in the future and is only used if the person becomes unable to make or communicate their own decisions.

The person can use an Advance Decision to Refuse Treatment to set out specific circumstances in which they would not want a particular treatment to be given, or when treatment should be stopped. This can include refusing treatments that could potentially be used to keep the person alive. For example, the person might decide to refuse ventilation if they cannot breathe by themselves or to refuse antibiotics for a life-threatening infection. It can also include DNACPR Orders.

An ADRT can’t include a request by a person to have their life ended. If a person is thinking about whether there may be some treatments that they would want to refuse in their future, it is worth talking it through with their health professional, who can help their person 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 the person doesn’t need a lawyer to write an Advance Decision to Refuse Treatment, they do have to contain certain wording to be legally binding. If the person has put a Lasting Power of Attorney in place to make decisions about their healthcare if they are unable to, the person should let them know if they create an Advance Decision to Refuse Treatment, so they can ensure that their wishes are followed.

During the conversation, record the discussion and any decisions made and check that the person agrees with your notes. Give them a written record of their advance care plan, which they can also take to show different services. Give people written information about advance care planning in a way that they can understand, and explain how it is relevant to them. 

Consent to share information

Ask if the person consents for their plan to be shared with relevant people. If they consent, ensure the plan is shared and transfer the plan if their care provider changes.

Review the advance care plan whenever treatment or support is being reviewed, while the person has capacity. Consider whether it would be helpful to involve a healthcare professional. Make any changes requested, including to any copies.

How this impacts end-of-life care

If the 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. An Advance Care Plan can detail the person’s wishes at the end of their life. This may involve family as well as carers. Although it may be difficult for family members to talk about their end of the person’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 the family to better understand what they want, so they can follow their wishes as far as possible.

Once the person has created their Advance Care Plan it will be added to their medical notes, so that anyone involved in their care is aware of their wishes.

An Advance Care Plan stating their wishes is not legally binding, but anyone who is making decisions about their care should take it into account. In some cases, it may not be possible to follow their wishes. For example, that person may prefer to be cared for at home, but they might develop a new symptom that cannot be managed at home. 

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

Of course, their plan is not set in stone and the person can change their mind about anything in their Advance Care Plan at any time. It is quite common for people to make changes to their Advance Care Plan.

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.

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Further information

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