Making an advance decision

An advance decision can be made by anyone 18 or over, to specify, in the event you become incapable of making any decisions because you are unconscious or mentally incapable of making your own decisions, which medical treatments you would refuse under certain circumstances, even if the treatment could help you to live longer. 

Advance decisions can be specific or general, and could include refusing:

• antibiotics in the case of severe bacterial infection
• being put on a drip if swallowing becomes too difficult
• being fed through a tube
• life-sustaining treatment, including CPR, if your heart or breathing stops.

What are the legal requirements?

It is important to make an advance decision when you are mentally competent. It will be legally binding in England and Wales if you:

• are an adult over the age of 18
• are mentally able and not experiencing mental distress when you make the advance decision
• understand what may happen by refusing a particular treatment
• state the treatment or treatments to be refused and the circumstances in which this refusal would apply. If this is not clear, your doctors may not act
• are not pressured or influenced by anyone else.

The advance decision should be the most recent expression of your wishes, so make sure to update it if your wishes change.

You may already have discussed these issues with your doctors or Parkinson’s nurse.

In some cases, your medical team may outline your wishes in a letter, so everyone has a copy of your decisions. This is helpful if:

• you have problems with writing or speaking
• English is not your first language
• you have learning or cognitive difficulties or disabilities, or other relevant issues such as sight difficulties.

If your advance decision includes refusing treatment that a health care professional could regard as necessary to keep you alive, your advance decision must:

• be in writing
• be signed and dated by you and a witness
• contain a clear written statement that the advance decision is to apply to the specific treatment, even if your life is at risk.

Advance decisions should never be confused with voluntary euthanasia or assisted suicide (also called assisted dying).

Not every situation can be planned for using an advance decision. Your healthcare provider will check it to make sure it applies to the specific situation.

Keeping decisions up to date

You should update your advance decision if:

• circumstances change
• you change your mind about something
• new treatments become available.

Every few years, it is a good idea to:

• check your advance decision
• re-sign it and date it, with a witness where necessary, to confirm that it still reflects your wishes.

It’s important to keep an up-to-date copy of your advance decision with your GP or healthcare professional, relevant people close to you, such as your family and your solicitor. You may also want to carry a note of your decision with you.

What are the alternatives to an advance decision?

There are other ways you can document your wishes for your future care. An Advance Statement (also called a Statement of Wishes) is a general statement of what you want and what is important to you. It is written down but isn’t legally binding the way the advance decision is.

If you have made a health and welfare lasting power of attorney, take care that this and the advance decision don’t conflict with each other.

Read more about making a power of attorney. 

In Scotland, you can express your wishes about how you would like to be treated in a social, medical and care situation when you no longer have mental capacity.  This is also referred to as an advance decision, or a living will.

In Scotland, your wishes are not generally legally binding. It’s possible doctors could override your wishes if they felt it was for your benefit.

However, under common law, your past and present wishes including any advance directive should be taken into account by health care professionals. That makes it even more important to discuss your wishes with your family, GP, or people responsible for your care. A solicitor can advise you on the best way to record your wishes.

In Northern Ireland, advance decisions are treated as legally enforceable by the Northern Ireland Department for Health, based on rulings from the courts.

There are no formal requirements for an advance decision to be enforceable in Northern Ireland, but it is easier to demonstrate the existence of an advance decision when supported by convincing and reliable evidence. This could take the form of witnesses or a signed statement recording your decision.