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The importance of an Advance Directive or Living Will

The importance of an Advance Directive or Living Will

An Advance Directive (also known as an Advance Decision or Living Will) is a legal way for someone to decide ahead of time which life-sustaining/life-saving medical treatments they would not want in the future.

There have been some reports of elderly people feeling pressured by GPs to complete a directive as coronavirus sweeps the country.

It is therefore extremely important that people understand what an advance directive can or cannot cover. There is no compulsion to make one, but some people feel more comfortable having taken control before they become very ill or unable to communicate their wishes.

Someone wishing to make an Advance Directive which refuses life-sustaining treatment needs to write it down, sign it and have it witnessed. It is legally binding as long as it complies with the Mental Capacity Act, in other words, as long as you have the mental capacity to write and sign the Advance Directive in the full knowledge of its implications.

The document must explain clearly what treatments are to be refused and under what circumstances. For example, if you want to refuse treatment that might result in death, then this needs to be stated clearly.  If the Advance Directive is binding it takes the place of decisions made in the best interests of the patient by other people, such as doctors or relatives.

Advantages of an Advance Directive

An Advance Directive enables an individual to think about what they would like to happen to them in the event that they lose the capacity to take informed decisions about their care.

Examples could include:

  • the use of intravenous fluids or medication
  • resuscitation
  • life-saving treatment in specific illnesses where capacity or consent may be impaired (such as brain damage, head injury, stroke or dementia)
  • specific procedures such as blood transfusions for Jehovah’s Witnesses

Limitations of an Advance Directive

An Advance Directive cannot be used to ask for specific medical treatment, or request something that is illegal,.

It cannot choose someone to make decisions for you, unless that person has been given lasting power of attorney. it cannot refuse treatment for a mental health condition (doctors are empowered to treat such conditions under Part 4 of the Mental Health Act).

Management of an Advance Directive & Living Will

The clinical team needs to be aware that such a provision exists.  It could be recorded in your relative’s medical notes. A Living Will pack is available here.

Alternatively, a directive may have a healthcare proxy: an individual who may also have ‘lasting power of attorney’. The role of the proxy is to ensure that the healthcare tea, carries out the wishes of the person. The proxy does not have the power to make decisions and the wishes of the patient may not be over-ruled.

Are there things you cannot include in an advance decision?

You cannot include the following:

  • refusing basic care that is essential to keep you comfortable, such as nursing care, pain relief, keeping you warm,
  • to refuse the offer of food or drink by mouth
  • asking for anything that is against the law such as euthanasia or help to take your own life
  • demanding specific medical treatment – no one can insist on treatment that healthcare professionals consider clinically unnecessary, futile or inappropriate
  • refusing treatment for a mental disorder if you are to detained under the Mental Health Act 1983
  • to refuse treatment when you still have capacity to make a decision.

Do I need to involve a doctor or solicitor?

You do not have to involve a doctor when making an advance decision. However a doctor could help you understand the consequences, advantages and disadvantages of what you are proposing. He or she could help you phrase your wishes, so you avoid making unclear statements that could raise doubts in future about its applicability.

If you have a terminal illness, you may wish to talk to the medical team involved in your care. They can help you relate specific decisions to the likely course of your illness, understand the consequences of refusing or opting for a particular treatment and verify you had mental capacity at the time you prepared the advance decision. Involving your GP or medical team means they record your wishes in your medical notes.

Reviewing your advance decision as your illness progresses will ensure your notes accurately reflect your wishes. This can form part of a wider on-going discussion about your future care and preferences, often referred to as ‘advance care planning’. You do not have to take legal advice but a solicitor could help you express your wishes clearly.

Does an advance decision need to be in writing?

When there is a valid Will, you would apply for a Grant of Probate, and it is granted in favour of one or all of the executors named in that Will.

Grant of Letters of Administration

An advance decision only needs to be in writing if you want to refuse life sustaining treatment. If you are not wanting to refuse life sustaining treatment, you would create a valid advance decision simply by telling your doctor you would not want a particular type of treatment in certain circumstances in the future.

It is best practice for the doctor to confirm you understand the consequences of what you are asking. They should record this in your medical records, along with details of anyone else present who heard what you said and their role in the conversation.

Putting it in writing and recording it in your medical notes avoids uncertainty over the validity of your advance decision. It also increases the likelihood that any doctor treating you will be aware of it. There is no dedicated form to use if you want to put an advance decision in writing.

Age UK  have produced a useful factsheet.  You might also find the NHS Choices guide helpful.

You might also be interested in reading about powers of attorney and writing a Will.

If you have any experience of advance directives and living wills, share them on our friendly forum.