What is an advance directive?

An advance directive is sometimes called a living will. It is a written statement of your wishes to refuse a certain treatment. It may also include the specific situation in which you wish to refuse the treatment. It is a way of making sure that everyone knows what treatment you do not want to have, if you become unable to make your own decisions in the future.

For example, you may decide one of the following things:

  • If your illness cannot be cured and you become very unwell after having all possible treatment, you do not want to be kept alive by being fed through a feeding tube or drip.
  • If your condition and quality of life is not improving and is getting worse while you are being fed via a feeding tube or drip, you do not want these treatments to continue.
  • If you are very ill and only expected to live for a few days, you do not want to be given antibiotics for an infection.

It is important to be as clear as possible about:

  • the treatment you would like to refuse
  • the circumstances when you would like your advance directive to apply.

Your advance directive cannot include a request to be given specific treatments, or to have your life ended.

You can only make an advance directive if you live in Scotland. If you live in England or Wales, please see our information about an advance decision to refuse treatment.

Who can make an advance directive and who should be involved?

You can make an advance directive if you are aged 16 or over, and are able to understand what it is and what it means for you. This is called having mental capacity.

Before making an advance directive, it is important to talk with a member of your healthcare team about the decisions you would like to make. This may be your GP, a specialist doctor or specialist nurse. They will be able to tell you what the likely effects of stopping a treatment will be. They will also make sure your advance directive meets legal requirements. It is also a good idea to discuss your decisions with your family, so they understand your wishes.

You may also want to contact a solicitor. They can help you to put together an advance directive. They will make sure your choices are accurately recorded and meet the legal requirements. Sometimes, you may be able to get help with the legal cost of making an advance directive. This means you may not have to pay the solicitor’s fees, or you may only have to pay part of them. To find out more about legal aid, speak to your solicitor or contact the Scottish Legal Aid Board on 0131 240 2082 (Monday to Friday from 8.30am to 5pm).

Advance directives and the law

In Scotland, adults with capacity to make decisions may choose to refuse a medical treatment. Making an advance directive means you will still have the right to refuse treatment if you lose capacity and can no longer tell others what you want.

Although not tested by the Scottish courts, an advance directive is likely to be treated as legally binding if it meets certain criteria. This means your healthcare team will almost certainly follow it, if they know about it.

These are examples of criteria that the advance directive must meet:

  • You must be able to make the decision in the first place (legal capacity).
  • The treatment you have chosen to refuse in your advance directive applies to your specific circumstances.

Your healthcare team or solicitor can tell you more about this.

What should be included in an advance directive?

Although you can make most advance directives verbally (spoken), it is better to write them down. This helps avoid confusion later. Your healthcare team or a solicitor will be able to tell you exactly what your written advance directive should include.

Once you have written your advance directive, it will need to be signed by you and witnessed by someone else. A solicitor can be there while you do this. The solicitor will usually want to make sure you understand the document and have not been influenced by another person when writing it.

In some cases, it may be better for you to have a welfare power of attorney instead of, or as well as, an advance directive. You could ask your healthcare team or your solicitor to help you decide which option is best for you.

Who should know about my advance directive?

When you have made your advance directive, it is important to tell the people caring for you about it. This can help to avoid any confusion if your condition changes. You should usually tell your:

  • healthcare professionals
  • next of kin – this is usually your closest living family member or family members
  • family and friends
  • welfare attorney, if you have one.

You may choose to keep a copy of your advance directive at home. You can also give copies to:

  • your welfare attorney, if you have one
  • your GP
  • your specialist nurse at the hospital.

You can ask your healthcare team about who else should know about it.

It is helpful if your GP creates a Key Information Summary (KIS). This is a care summary that includes key information about what is important to you and what your wishes are. It will say that you have an advance directive. It will also list the main decisions in it.

This means that if you need urgent medical help when your GP practice is closed, other health professionals can find out about your wishes.

Reviewing your advance directive

You can change your mind and rewrite your advance directive at any time. But this must be clearly recorded.

Review your advance directive regularly so you can be sure it is up to date and reflects your current wishes. This is important as your wishes may change if your condition changes.

If you decide to cancel your advance directive, tell your healthcare professionals and the people close to you.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

You may hear doctors or nurses talk about a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision or form. This is a written document stating the decision not to give cardiopulmonary resuscitation (CPR) if someone’s heart or breathing stops.

A CPR decision may be made and recorded on a Scottish DNACPR form if:

  • you ask for a DNACPR form because you do not want CPR in certain circumstances
  • your health is getting worse and your doctors and healthcare team do not think that CPR would work.

You may have already made a decision about not wanting to be resuscitated in a specific situation and included this your advance directive. If you have not made a decision about CPR but you want to, talk to your GP, medical team or specialist nurse. You may also want to talk to your family, a close friend, or a spiritual or religious leader.

The DNACPR form is kept in your records if you are in hospital, at home with you, or by care home staff. The Key Information Summary will also have a record of any CPR decisions.

NHS Scotland has an information leaflet called Decisions about cardiopulmonary resuscitation. There is also an information leaflet called MyACP that you might find helpful.