What is an advance decision?
An advance decision (sometimes known as an advance decision to refuse treatment, an ADRT or a living will) is a decision you can make now to refuse a specific type of treatment at some time in the future.
An advanced decision lets your family, carers and health professionals know whether you want to refuse specific treatments in the future. This means they will know your wishes if you are unable to make or communicate those decisions yourself.
It is important that the treatments you wish to refuse are all named in the advance decision. It is possible for you to refuse a treatment in some situations but not others. Therefore, it is imperative that you are very clear about all the circumstances in which you want to refuse treatments.
You can refuse life sustaining treatment, this includes ventilation and cardiopulmonary resuscitation (CPR), which may be used if you cannot breathe by yourself or if your heart stops. You may wish to discuss this with a doctor who knows about your medical history and about the kinds of treatments you might be offered in the future, and what it might mean if you choose not to have them before you include this in your advanced decision.
Who can make an advance decision and is it legally binding?
You can make an advanced decision if you are over the age of 18 and have the mental capacity to make such decisions. This means you need to understand and communicate your decision at the time of making the advanced decision. For your advance decision to be legal and valid it needs to be:
- written down with clear instructions about the treatments you wish to refuse and the circumstances in which you wish to refuse the treatments
- it is signed by you – and by a witness if you want to refuse life-sustaining treatment. You must also include a statement that the advance decision applies even if your life is at risk
- complies with the Mental Capacity Act
- is valid, so it has been made of your own accord, without any harassment by anyone else
- you haven’t said or done anything that would contradict the advance decision since you made it (for example, saying that you have changed your mind)
If your advance decision is binding, it takes precedence over decisions made in your best interest by other people.
How does an advance decision help?
As long as it is valid and applies to your situation, an advance decision gives your health and social care team, clinical and legal instructions about your treatment choices. An advance decision will only be used if, at some time in the future, you are not able to make your own decisions about your treatment. The fundamental point is that is you making decisions about your future treatment while you can. This will take the pressure of loved ones having to make decisions at a time when it will be very difficult for them.
Who should be given a copy of my advanced decision?
It is your decision about who sees it, but you should make sure that your family, carers, and health and social care professionals know about it, and know where to find it as it may be needed quickly if you require emergency treatment. If you are currently undergoing specific treatment, it would make sense for your consultant to have a copy of your advanced decision recorded on your medical records or at the very least a copy given to your GP. You can also carry a card stating you have an advanced care plan and contact details for your next of kin (significant other). It is important you keep a note of who has a copy of your advanced decision, so you can retrieve them should you change your mind in the future.
Refusing CPR in advance
Everyone has the right to refuse CPR if they wish. You can make it clear to your medical team that you do not want to have CPR if you stop breathing or your heart stops beating.
This is known as a “do not attempt cardiopulmonary resuscitation” (DNACPR) decision or DNACPR order. Once a DNACPR decision is made, it is put in your medical records, usually on a special form that health professionals will recognise. It is also helpful to let your family or other carers know about your DNACPR decision, so it doesn’t come as a surprise to them if the situation arises.
If you have a serious illness, or are undergoing surgery that could cause respiratory or cardiac arrest, a member of your medical team should ask you about your wishes regarding CPR, if you haven’t previously made your wishes known. If you don’t have the capacity to decide about CPR when a decision needs to be made and you haven’t made an advance decision to refuse treatment, the healthcare team may consult with your next of kin about what they know of your wishes in order to make a decision in your best interests.
A DNACPR order or advanced decision is not permanent, and you can change your mind and your DNACPR status at any time.
To discuss an advanced decision or for more information, please contact Rebecca Bristow at rb@startpointlaw.co.uk or call 01548 288008