Advance decision

What is an advance decision?

Whilst you have no legal right to demand specific medical treatment, or ask for your life to be ended, if you have the mental capacity then you have the right to consent to or refuse treatment. This includes the right to say in advance that you want to refuse treatment if you lose mental capacity in the future, even if this results in your death.  The phrase ‘advance decision’ means an advance decision to refuse treatment and is sometimes referred to as an ‘advance directive’ or a ‘Living Will’.

An advance decision can be made verbally or in writing, unless it deals with the refusal of life-sustaining treatment in which case it must be in writing.

What information should be included in an advance decision?

A written advance decision should include the following information about you:

  • Full name, address, date of birth, and any distinguishing features
  • Name and address of your GP
  • A statement that the document should be used if you ever lack the capacity to make treatment decisions
  • A clear statement of the decision, the treatment to be refused and the circumstances in which the decision will apply (to include possible future circumstances)
  • A statement that the decision applies even if life is at risk
  • The date the document was written (or reviewed)
  • Your signature
  • The signature of the witness

Advance decisions can refuse any kind of treatment – including life-sustaining treatment – but an advance decision to refuse treatment for mental disorder can be overruled if the person is detained in hospital under the Mental Health Act 1983, when treatment could be given compulsorily.

Life-sustaining treatment is any treatment that a healthcare professional considers necessary to sustain life, whether that is a major surgical operation or an organ transplant, day-to-day treatment such as a course of antibiotics, or artificial nutrition or hydration. The important factor is whether the treatment is necessary to keep you alive.

Artificial nutrition and hydration (using tubes to provide nutrition and fluids to someone who cannot take them by mouth) has been recognised as a form of medical treatment. Refusing artificial nutrition and hydration in an advance decision is likely to result in your death.

An advance decision cannot refuse actions that are needed to keep you comfortable (sometimes called basic or essential care) such as warmth, shelter, washing, bathing, mouth care, and the offer of food and drink by mouth.

Is the advance decision valid?

For an advance decision to be valid, it needs to have been signed when you are over the age of 18, not being influenced by any other person, and mentally capable. You must be assumed to have mental capacity unless it is proven otherwise. Healthcare professionals should therefore always start from the assumption that you had the mental capacity to make the advance decision, unless they are aware of reasonable grounds to doubt this.

Further, for an advance decision to be valid, it must not have been withdrawn by you.  An advance decision can be cancelled or altered at any time while you still have the mental capacity to do so.  An advance decision can be cancelled verbally, or in writing, or where you have done something that clearly suggests that you have changed their mind.  As such, it is sensible for anyone who has made an advance decision to check and re-sign it regularly, or if their health situation changes.  An advance decision made a long time in advance may raise doubts when deciding whether it is valid.

Is the advance decision applicable?

For an advance decision to be applicable, you must be mentally incapable of making a decision on the proposed treatment at that point in time. In addition, the advance decision must apply to the current circumstances and the proposed treatment. When deciding whether an advance decision is applicable, healthcare professionals must consider whether there have been changes in your personal life, and whether there have been developments in medical treatment that you did not foresee.  If the advance decision document does not anticipate a change in circumstances or medical treatments available, healthcare professionals may decide that it is not applicable if those particular circumstances arise.

What is the effect of an advance decision?

Healthcare professionals must follow an advance decision if it is valid and applies to the particular treatment and circumstances, even if they believe that this would not be in your best interests. If they do not, they could face criminal prosecution or civil liability. Making an advance decision therefore makes it more likely that your wishes in relation to future medical treatment will be followed.  This is particularly so where those wishes include the refusal of life-sustaining treatment.

If an advance decision is not valid or applicable to current circumstances, healthcare professionals must consider the advance decision as part of their assessment of your best interests if they have reasonable grounds to think it is a true expression of your wishes.

What should be considered after making an advance decision?

It is your responsibility to make sure your decision will be drawn to the attention of healthcare professionals when it is needed.  It is sensible to inform family and friends of the existence of the advance decision, and to have the advance decision recorded on your healthcare records.  Some people also carry a card or wear a bracelet.

As stated above, anyone who has made an advance decision should regularly review and update it as necessary. An advance decision made a long time in advance may raise doubts when deciding whether it is valid.

Are there any alternatives to an advance decision?

Many people prefer not to make an advance decision, and instead leave healthcare professionals to make decisions in their best interests at the time a decision needs to be made.

Another option is to make a Health & Welfare Lasting Power of Attorney (LPA) which is a document that allows the chosen Attorney(s) to make decisions about treatment. The Health & Welfare LPA gives the chosen Attorney(s) the power to make decisions about treatment in any circumstances, not just those which have been precisely detailed and includes decisions which are not about life sustaining treatment, and so is very much more flexible than an advance decision which must specify the exact circumstances in which it is to apply.

If both an advance decision and a Health & Welfare LPA exist, it is the most recent document which takes priority. An advance decision is made on the date it is signed. A Health & Welfare LPA is made on the date it is registered with the OPG. There may be situations where an advance decision deals with certain decisions and a Health & Welfare LPA deals with others.