Making a living will in a care home | Advance decisions

A living will lets you refuse specific types of care and ensures your wishes regarding future care and medical treatment are adhered to.

A living will can give you more control over your end of life care and ensure your wishes are respected.
Here you will find information about living wills, also known as advance decisions in England, Wales and Northern Ireland and advance directives in Scotland.

What is a living will (an advance decision)?

An advance decision, formerly known as and commonly referred to as a living will, is a decision you can make now that lets you refuse specific types of medical treatment in the future in case you become unable to make or communicate this decision later in life.

It is sometimes referred to as an advance decision to refuse treatment (ADRT).

In Scotland, the term advance directive is commonly used as opposed to advance decision.

An advance decision can be made by anyone who has the mental capacity to do so. It is advisable to discuss this with your healthcare professional(s).

An advance decision informs your family, care workers and health professionals of your wishes to refuse certain treatment if you lack the mental capacity to communicate this yourself. An advance decision lets you refuse any medical treatment except basic care, such as being offered food and drink by mouth, and includes refusal of life-sustaining treatment.

Life-sustaining treatments

Life-sustaining treatments, which replaces or supports body functions and could keep you alive, include but are not limited to:

• Ventilation to help with breathing if you cannot do so yourself
• Cardiopulmonary resuscitation (CPR) if your heart stops
• Antibiotics against infections
• Clinically assisted nutrition and hydration
• Chemotherapy or other cancer treatment
• Organ transplant

You cannot ask for assistance to end your life, such as euthanasia and assisted suicide as they are illegal. Additionally, you are unable to request certain treatment.

The decision can also not be used to give someone else the power to make decisions for you. If that is what you want, you will need to make a lasting power of attorney.

Each treatment you are refusing must be named and in what circumstances your decision applies. Your advance decision will only come in effect if you lose the capacity to communicate or make decisions about your treatment. In this event, the people caring for you must do as they are instructed.

In England, Wales an advance decision is legally binding provided it meets certain criteria, which means that if health professionals do not follow your instructions, they could be taken to court. Similar rules apply in Northern Ireland.

Advance directive

A living will in Scotland, commonly referred to as an advance directive, differs slightly from an advance decision.

Similar to an advance decision, the advance directive is used to refuse any future medical treatment should you wish to. This includes life-sustaining treatment, such as CPR if your heart stops and receiving food through a tube or a drip.

Advance directives in Scotland are evidence of a person’s wishes about their care. This is important because if you lack capacity to make, understand or communicate a decision about your medical treatment, the doctor or other health professional must consider your past and present wishes, but are not bound by law to do so.

This comes under the Adults with Incapacity (Scotland) Act 2000.

How to make an advance decision (living will) in the UK

The most important thing about an advance decision is to make sure that the right people are aware of it. Unless your GP or other medical staff know about your decision, it will not be recorded in your medical files and your wishes may not come true.

It is therefore strongly recommended that you, in detail, write it down and provide the relevant health professionals as well as your family and friends that you would like to inform with a copy. Ensure that your decision is clearly written to avoid any issues in the future.

To refuse life-sustaining treatment, you are required to include a sentence stating that your refusal of specific treatments apply even if life is at risk as a result.

It is advisable to review the document, which you are free to change, regularly to make sure that your advance decision still reflects your wishes.

Although it is not a requirement, it is advisable to speak to a doctor before you make the decision who can inform you of the risks and benefits of refusing specific treatments. You do not need to use a solicitor, but it could be beneficial to seek legal advice as the rules can be difficult to interpret.

What to include in your advance decision (living will)

It is advised to write down your advanced decision. Below you will find suggestions and guidance of what to include. Remember that it needs to be clear what treatments you wish to refuse and in what situations.

If you want to refuse life-sustaining treatment, such as CPR, you must state your living will applies even if your life is at risk as a result.

• Your name, address, date of birth and NHS number
• Distinguishing features to help identify you quickly if necessary
• Details of your GP, such as name, surgery and contact details
• Who you have discussed it with including family and friends
• A detailed and clear statement of what treatments you refuse and in what situations
• A statement explaining why you have made the advance decision
• Requests regarding who should be involved in your care
• Power of attorney details if applicable
• Signatures from you and witnesses, including date, relationship and address

All this information will provide health professionals with guidance as to how to care for you in specific events, such as in an emergency. They will know who to contact about your advance decision, such as your GP and family members if, for example, your wishes are unclear.

It is very important to be as clear as possible in your statement and to avoid any words that are open to interpretation. Make sure that you note down exactly what treatments you want to refuse and when it applies.

You can, if you want, write “I refuse all life-sustaining treatment” as that will make it clear to a health professional and is not open to interpretation.

Explaining why you have decided to refuse specific treatment will help those involved in your care make decisions that are in your best interest and to avoid doubt.

What could happen if I don’t have a living will?

If you have not made an advance decision and made your wishes clear about future treatments, healthcare professionals will be unaware of these.

In this case, you will not have the same control over decisions made about your care in the future. This then could result in a number of complications, including being kept alive against your will.

This could mean heartbreak both for you and your family members and friends.

Is a living will legally binding?

The legalities surrounding living wills vary across the UK. Follow the link below to find out if doctors and nurses are bound by law to follow your living will.

Are living wills legally binding?