Advance decisions and advance statements for future care

Planning ahead for a time when you may not be able to make or communicate decisions can involve two different documents. The NHS explains that an advance decision to refuse treatment, sometimes called an ADRT or a living will, lets your family, carers and health professionals know your wishes about refusing treatment if you are unable to make or communicate those decisions yourself.

An advance statement is different. The NHS describes it as a written statement that sets down your preferences, wishes, beliefs and values about future care, as a guide to anyone who might have to make decisions in your best interest. It can cover any aspect of health or social care, including where you would like to be cared for and how you like to do things.

The two are complementary. An advance statement can describe what matters to you, while an advance decision can set out specific treatments you do not want.

The practical difference is legal force. The NHS says an advance decision is legally binding if it meets certain criteria, and then takes precedence over decisions made in your best interest by other people. An advance statement is not legally binding, but must be taken into account.

The NHS says an advance decision may only be considered valid if you are aged 18 or over and had capacity to make, understand and communicate it when you made it, you specify clearly which treatments you refuse, you explain the circumstances in which you refuse them, it is signed by you (and by a witness if you want to refuse life-sustaining treatment), you made it of your own accord without harassment and you have not said or done anything since that would contradict it.

The treatments you are refusing must all be named. You may want to refuse a treatment in some situations but not others, in which case you need to be clear about all the circumstances. The NHS suggests it may be helpful to discuss this with a doctor or nurse who knows about your medical history.

The NHS says you can refuse treatment that could potentially keep you alive, such as ventilation, cardiopulmonary resuscitation (CPR) and antibiotics. If you want to refuse life-sustaining treatment, the decision must be written down and signed by you and a witness, and include a statement that it applies even if your life is at risk.

On CPR, the NHS notes that in hospital around 1 out of 4 people survive and leave hospital after CPR, that survival rates are usually lower in other settings and that even when CPR is successful, people can develop complications such as fractured ribs, organ damage or brain damage. Everyone has the right to refuse CPR, which is recorded as a do not attempt cardiopulmonary resuscitation (DNACPR) decision in your medical records, and your team can discuss your likely chance of benefit.

You make the advance decision yourself as long as you have mental capacity, and you may want to make it with the support of a clinician. The NHS says you have the final say on who sees it, but you should make sure family, carers or health and social care professionals know about it and where to find it, because they may need to find it quickly in an emergency. You can keep a copy in your medical records.

For advance statements, the NHS suggests writing it down with support from relatives, carers or professionals, keeping it somewhere safe and telling people where it is. It also points to Dying Matters for help starting conversations, and to Age UK, Alzheimer's Society, Cancer Research UK and Compassion in Dying for guidance.

The NHS notes that sometimes people do not have mental capacity, which is the ability to make decisions, for a number of reasons including illness. It links to GOV.UK information on making, registering or ending a lasting power of attorney and on the Mental Capacity Act.

A lasting power of attorney is a separate legal tool that lets you appoint someone to make decisions for you. It is worth considering alongside an advance decision, because an attorney can speak for you in situations your document does not anticipate.

The NHS says you have not said or done anything that would contradict the advance decision since you made it, for example saying you have changed your mind. People's views change as health and circumstances change, so it makes sense to review your documents after a new diagnosis, a major operation or a change in your life.

If you change your mind, tell the people who know about the document and update or withdraw it, so that nobody acts on an out-of-date version.

The NHS says you may find it helpful to talk to a doctor or nurse who knows your medical history about the treatments you might be offered in future, and you can make the advance decision with the support of a clinician.

Some people also take advice from a solicitor, particularly for lasting powers of attorney. A solicitor is not required for an advance decision, but legal help can ensure the wording is clear and covers the circumstances you have in mind.