Advance decisions: how to make a living will

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Also known as a living will, an advance decision is a document that gives instruction for end-of-life care in case you can’t.

By Amy Curtis – Journalist and certified personal trainer

Nobody wants to think about the end of their life, but an advance decision, also known as a living will, takes the responsibility away from family and friends should you find yourself in a situation where you’re unable to communicate your wishes.

Sarah Malik, specialist information and support nurse at the charity Compassion in Dying, gives us the lowdown on how to draw up the paperwork, why you might want to and what it actually means:

What is a living will?

A living will, now called an advance decision, allows you to record any medical treatments that you don’t want to have in the future, in case you later become unable to make or communicate decisions for yourself. It will only be used if you lose capacity to make these decisions, which can happen if you become seriously unwell through illness or injury.

In England and Wales the legal name is an advance decision to refuse treatment (ADRT), though it is sometimes still referred to as a living will. In Scotland it’s called an advance directive.

An advance directive is legally binding in England and Wales, which means it must be followed.

Can anyone make an advance decision?

Anyone over the age of 18 with capacity can make an advance decision. You do not need to be unwell or elderly to put one in place.

What should an advance decision include?

An advance decision allows you to refuse any treatments you do not want in the future. This can include life-sustaining treatments such as:

Even if you decide to refuse a certain treatment, you would still continue to receive care to keep you clean and comfortable.

For instance, some people use their advance decision to refuse life-sustaining treatment, such as artificial nutrition and hydration, if they are ever diagnosed as being in a vegetative state with little or no chance of recovery. This means that they will be allowed to die a natural death instead of being kept alive artificially with a quality of life they would not find acceptable to them.

You cannot request any treatments in your advance decision, only outline when and if you would want to refuse them.

Advance decisions and future care

You can also make an advance statement which allows you to record important information about your future care. This can include where you’d like to live and be cared for at the end of your life. You can also include things that are important to your well-being, such as information about your diet and activities that make you feel good.

For example, some people have included that they like to listen to music and be able to spend time in a garden. Though not legally binding, an advance statement should be taken into account when decisions are being made about your care and treatment.

Do I need a lawyer for an advance decision?

It is completely free to make an advance decision and you do not need to use a solicitor. Compassion in Dying is the UK’s biggest provider of free advance decision forms, which can be downloaded and printed or sent to you in the post.

You can also create one online at MyDecisions, a free website which guides you through the sections of the form and allows you to pause, save and come back to your form so you can complete it at your own pace.

Is an advance decision legally binding?

Since the Mental Capacity Act 2005, advance decisions have been legally binding in England and Wales. As long as an advance decision is ‘valid and applicable’ and a healthcare professional knows you’ve made an advance decision, they have to follow it. If they ignore an advance decision then they could be taken to court.

If you made a living will before 2005, you should check to make sure it meets the requirements to be legally binding. Compassion in Dying can support you to do this through the free information line (0800 999 2434).

In Scotland and Northern Ireland they are not yet legally binding, but they are widely recognised by healthcare professionals as an important record of your wishes and should be taken into account when decisions are made about your treatment.

Can an advance decision be overridden?

As long as your advance decision is ‘valid and applicable’, doctors are legally bound to follow it.

Can you update an advance decision?

You can update or change your advance decision at any time while you have capacity.

We recommend that you review your advance decision every couple of years to include up-to-date information about your health and give you a chance to make sure the advance decision still reflects your wishes.

Who to tell about your advance decision

We recommend that you discuss your wishes and share copies of your advance decision with your loved ones and GP.

You can ask your GP to log a copy of your advance decision on your medical record to help ensure that doctors are aware of and can easily access your wishes, should the need arise.

You can also ask your local Ambulance Trust to record a copy – this is particularly recommended if you have a life-limiting condition and may be likely to receive emergency care.

Net Doctor

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