A ‘living will’ is an umbrella term often used rather vaguely in general conversation. Though many people think that they can write a ‘living will’ leaving instructions about how they want to end their lives when the time comes, this is not how it works in practice.

Because of the confusion about the meaning of the term ‘living will’, it has been replaced by another term – Advance Decision, or Advance Decision to Refuse Treatment (ADRT) – which carries more specific meanings and is more accurate.

Advance Decision

If you want to refuse certain kinds of medical treatment at some time in the future, and at a time when you are no longer able to communicate your wishes effectively (for example if you develop dementia, or become confused in old age or because of a particular illness) you should write an ‘Advance Decision’.

In other words an Advance Decision is a document you should draw up when you are mentally capable on the basis that it will only be used once you have lost mental capacity to participate in the decision-making process about your medical treatment.

It is important to know the following facts about Advance Decisions:

1. Advance Decisions cannot be used to insist that a particular medical treatment is given and can only be about refusing certain forms of treatment.

2. Advance Decisions cannot authorise doctors to do anything unlawful, such as practise euthanasia.

3. Advance Decisions cannot include the refusal of ‘basic care’ such as the maintenance of your bodily cleanliness, the alleviation of severe pain and the provision of oral nutrition and hydration.

If you decide to write an Advance Decision, it is a good idea to make at least 2 or 3 copies. One each for you and your GP and perhaps one for your solicitor if you have one. Your copy should be kept with your personal papers or/and with a family member (it is also a good idea to talk to your partner/spouse/family about the things you have said in your advance directive and also tell them where you are going to keep it).

Advance Decisions should be updated every 2 or 3 years or when any circumstances change e.g. pregnancy, change of religion, new diagnosis, recovery and should be kept safe. Families and all relevant medical professionals need to be aware of their existence and should always have the latest version.

Guidelines for making an Advance Decision

To make an Advance Decision legally binding it must meet the following criteria:

the person must have been over 18 years old when he/she signed the document
s/he must have mental capacity. A person has mental capacity if they can make a decision, and understand the consequences of it. A GP can sign to witness that a person had mental capacity when they made their Advance Decision.
s/he must not have been influenced or harassed by anyone else when preparing the advance decision. The decisions must be their own – they must not have been forced to make decisions by others.
s/he must have been fully informed about the treatment options and their implications when the Advance Decision was made. And they must be specific about which treatments they want to refuse in specific situations.
the Advance Decision must be signed, dated and witnessed by at least one independent witness over the age of 18.
Advance Decision must be made available to medical staff at the time treatment decisions have to be made.
s/he must not have modified the Advance Decision verbally or in writing since it was signed and dated. If changes are needed a new advance decision must be completed and signed, dated and witnessed.
s/he must keep the Advance Decision up-to -date especially when any circumstances change.

Standard blank versions of Advance Decision forms are available from Compassion in Dying. .

Another part of what people have referred to loosely in the past as a ‘living will’ is now called an Advance Statement. Though some people use the term Advance Statement interchangeably with that of Advance Decision they are NOT the same. Advanced Decisions are used to refuse specific treatments in the future and are legally binding Advance Statements (see below) are a general statement of what a person wants and what is important to them. It is not legally binding like an Advance Decision but it should be taken into account by health care professionals when deciding what is in a person’s best interests.

Advance Statement (Statement of Wishes)

An Advance Statement can be a written document (such as a letter making their wishes known), a witnessed oral statement, a signed printed card or a note of a discussion recorded in your medical records. It is a general statement which contains information the person feels is important for others to know. It will help people involved in their care to understand what they want and what is important to them if they cannot speak or make decisions for themselves. It is not legally binding like an Advance Decision, but it should be taken into account by health and care professionals when deciding best interests.

As Compassion in Dying explains, an Advance Statement can cover any aspect of a person’s future health or social care such as:

how you want any religious or spiritual beliefs you hold to be reflected in your care
where you would like to be cared for, for example at home or in a hospital, a nursing home, or a hospice
how you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on
concerns about practical issues, for example who will look after your dog if you become ill (Compassion in Dying 2014)

Advance Statements can also be used to nominate someone who you would like to be consulted at the point at which a decision has to be made. But if you wish someone else to make health decisions on your behalf you should appoint a Lasting Power of Attorney for Health and Welfare (see Compassion and Dying’s website for more information on Lasting Power of Attorney).

Advance Care Plans or Preferred Priorities for Care (PPC)

An Advance Care Plan is another optional document for people to use to help think about, talk about and write down their wishes and preferences during the last year or months of their life. It will normally be made in partnership with a person’s health team when they enter the end-life phase and not before, unlike Advance Decisions, Advance Statements and Lasting Powers of Attorney. Advance Care Plans are used to record care and treatment wishes and should be attached to medical notes and easily accessible to those involved in a person’s care. It aims to help them and their carers plan their care when they are dying. This means that everyone involved in their care knows how that person wishes to be cared for. The most commonly used type of end-life care plan is called the Preferred Priorities for Care (PPC) document. If a person has made an Advance Decision, Advance Statement or Lasting Power of Attorney this should also be noted in their Advance Care Plan.
Advance Care Plans are not legally binding, however, doctors and people involved in their care will know what is important to them and will try to follow their wishes and the document will be taken into account when deciding what is in their best interests. The kinds of wishes you can set out include:

• Where you want to receive care
• Where you want to die
• Who you want to be with you
• Values such as religious belief or dietary requirements