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Advance Decisions – Living Wills

 Advance Decisions

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An Advance Decision, known either as an ADRT (Advance Decision to Refuse Treatment), or a Living Will, is a decision you can make now to refuse a specific type of treatment at some time in the future: it lets your family, carers and health professionals know whether you want to refuse specific treatments in the future, so that they will know your wishes if you are unable to make or communicate those decisions yourself.

As long as it is valid and applies to your situation, an Advance Decision gives your health and social care team clinical and legal instructions about your treatment choices, and will only be used if, at some time in the future, you are not able to make your own decisions about your treatment: the treatments you are deciding to refuse must all be named in the Advance Decision, and you may want to refuse a treatment in some situations, but not others: if this is the case, you need to be clear about all the circumstances in which you want to refuse this treatment.

You can refuse a treatment that could potentially keep you alive, known as life-sustaining treatment: this includes treatments such as ventilation and cardio pulmonary resuscitation (CPR), which may be used if you cannot breathe by yourself or if your heart stops. You may want to discuss this with a doctor or nurse who knows about your medical history before you make up your mind.

An Advance Decision is not the same as an Advance Statement, which can explain your detailed likes and dislikes and include anything that is important for you to be comfortable: an Advance Statement allows you to say how you would like to be looked after and cared for and will be used if you ever lose the ability to make or communicate your own decisions. For example, you might include information on:

  • Where ideally you would like to be cared for, e.g. your home, a care home or a hospice
  • Your dietary requirements
  • Foods you do and do not like
  • Whether you prefer baths or showers
  • What kind of clothes you prefer to wear
  • The type of music you like and what you like to watch on TV
  • Whether you like to sleep with a light on
  • How you like your day to be planned, such as your bedtime and whether you’re an early riser or prefer a lie in
  • Your religious or other beliefs and values
  • Who you wish to be consulted about your care
  • Who you would like to visit you

It is prudent to give a copy of your Advance Statement to all those involved in your care, especially your care staff, GP and medical team, so that they know your wishes and preferences: Advance Statements must be considered by the people providing your treatment when they determine what is in your best interests, but they are not legally bound to follow your wishes.

Deciding to refuse a treatment is not the same as asking someone to end your life or to help you end your life: euthanasia and assisted suicide are illegal under English law.

You make the Advance Decision whilst you have the mental capacity to make such decisions and you may want to make an Advance Decision with the support of a clinician.

If you decide to refuse life-sustaining treatment in the future, your Advance Decision needs to be written down, signed by you and signed by a witness.

Life-sustaining treatment is treatment that replaces or supports ailing bodily functions, for example, a mechanical ventilator can help you breathe, or taking antibiotics can help your body fight infection.

If you wish to refuse life-sustaining treatments in circumstances where you might then die, you need to state this clearly in your Advance Decision: life-sustaining treatment is sometimes called life-saving treatment.

You may find it helpful to talk to a doctor or nurse about the kinds of treatments you might be offered in the future, and what it might mean if you choose not to have them.

An Advance Decision is legally binding, as long as it complies with the Mental Capacity Act, is valid, and also applies to the situation: if your Advance Decision is binding, it takes the place of decisions made in your best interest by other people.

HOWEVER, please be aware of a  Court Of Protection ruling by President of the Family Division Sir James Munby, which over-rules the Mental Capacity Act directives: view the full Mail Online article.

The practice directions now set down by Sir James Munby mean that people who write Living Wills, also known as Advance Directives, can no longer be assured that they will be allowed to die in line with their instructions.

The workings of the Act have now been put on hold under Court of Protection issued directions without fanfare last year by Sir James Munby, who heads the court.

Sir James' direction ruled that in future decisions about the withdrawal of artificial nutrition and hydration 'should be brought to the court'.

Mr Justice Baker said: 'Applications to the court should be obligatory in all cases where the withdrawal of artificial nutrition and hydration is proposed, at least for the time being.'

He added in the speech, delivered in Oxford and published last week: 'The time may come when applications to the court are unnecessary save where there is a dispute. But for my part, I do not believe that we have yet got to that point.'

He added: 'Medical science and the law are still evolving. Until such time as we have greater clarity and understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent oversight.'

An Advance Decision may only be considered valid if:

  • You are aged 18 or over and had the capacity to make, understand and communicate your decision when you made it
  • You specify clearly which treatments you wish to refuse
  • You explain the circumstances in which you wish to refuse them
  • It is signed by you and by a witness if you want to refuse life-sustaining treatment
  • You have made the Advance Decision of your own accord, without any harassment by anyone else
  • You haven't said or done anything that would contradict the Advance Decision since you made it (for example, saying that you have changed your mind)
  • You must also include a statement that the Advance Decision applies even if your life is at risk
  • You have the final say on who sees the Advanced Decision, but you should make sure that your family, carers, or health and social care professionals know about it and know where to find the document: you can keep a copy in your medical records

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