What this post is about
It is not easy to think about a time when you are no longer able to make your own health and welfare decisions. If that time comes, having set up an Advance Decision can make life easier.
An Advance Decision allows you to write down any treatments that you don’t want to have in the future in case you later become unable to make or communicate decisions for yourself. The legal name is an Advance Decision to Refuse Treatment, and it is also sometimes called a Living Will or an Advance Directive.
This post applies to the law in England and Wales only. There are different rules in Scotland and Ireland.
You will see the term ‘mental capacity’ throughout this post. Just so you understand, having mental capacity means you can make your own decisions and understand the implications of them.
No one can make an Advance Decision unless they have mental capacity to do so. For this reason, it is important that you consider making an Advance Decision whilst you are well, otherwise it can be too late.
If there comes a time when you cannot make a health and welfare decision because you have lost mental capacity, and you haven’t made an Advance Decision or created a Lasting Power of Attorney (LPA) for health and welfare, the Court of Protection may need to become involved. This can be long winded and expensive, so it is far better for you to either make an Advance Decision or choose someone you trust, and appoint them in an LPA for health and welfare, to deal with the things you choose.
The difference between an Advance Decision and a Lasting Power of Attorney (LPA) Health and Welfare
An Advance Decision is different to an LPA for health and welfare. Under the latter you appoint someone else to make health and welfare decisions for you when you cannot make them yourself because you lack mental capacity.
When you make an Advance Decision, you are not appointing someone else to make decisions for you. You are expressing your own wishes as to refusal of medical treatment, and those wishes must be followed.
• an Advance Decision is specific as to which treatment/s you wish to refuse and under what specific circumstance/s.
• your family, carers and healthcare professionals will all be aware of your refusal for certain treatments.
• an Advance Decision should leave no room for misunderstanding
Good to know
• You can have both an LPA for health and welfare and an Advance Decision
• If you intend to have both, you should make the LPA first. The advantage to this is that it allows your attorneys in the LPA to ensure your wishes to refuse treatment/s are upheld and gives them certainty that they are acting in your best interests
• If you make an Advance Decision after making an LPA for health and welfare, your attorney will not be able to override what is written in your Advance Decision. In this situation, if a decision needs to be made about something that you have not detailed in your Advance Decision, then your attorney will still be able to act on your behalf
• If you have both an Advance Decision and an LPA, make sure that you tell your attorney about your Advance Decision and give them a copy
• Just like an LPA, an Advance decision will only be used if you cannot make or communicate a decision for yourself
• Some people feel an Advance Decision can be inflexible because:
1. You do not know what will happen to you in the future.
2. Your Advance Decision needs to be specific at that time in the future when it is needed.
3. You cannot be certain how you might feel about circumstances that have not arisen at the present time.
4. Your Advance Decision will only apply if you are in a medical situation that you have included within it. If you are in a different situation, your Advance Decision will not apply. For example, if you refuse life-sustaining treatment if you have dementia, but not in any other situations, then if you have a stroke your Advance Decision will not apply. Likewise, your Advance Decision will also only apply to the treatments you have refused within it. For example, if your Advance Decision only includes a refusal of CPR, but later you lose capacity and need to be given artificial nutrition and hydration, your Advance Decision will not apply
Advance Decisions are legally binding in England and Wales if they meet certain criteria. This means that if a healthcare professional knows that you have made an Advance Decision, they must follow it. If they ignore an Advance Decision, then they could be taken to court.
You can use an Advance Decision to refuse any medical treatment including life-sustaining treatment, such as:
• cardiopulmonary resuscitation (CPR) if your heart stops
• being put on a ventilator if you cannot breathe on your own
• being given food or fluids artificially, for example through a drip, a tube through the nose or through a tube directly into the stomach
• antibiotics for a life-threatening infection
You cannot use an Advance Decision to:
• Ask for something illegal, such as assistance to end your life.
• Refuse to be offered food and drink by mouth or to refuse care that keeps you clean and comfortable. This is because these things are part of basic care, which healthcare professionals have a duty to provide.
• Choose someone else to decide about treatment on your behalf. Choosing another person to make decisions about your health and care is done by making a Lasting Power of Attorney for Health and Welfare.
• Demand certain treatments. This is because doctors do not have to give you treatment just because you ask for it. Doctors decide whether treatment is medically appropriate for your condition and then you decide whether you want that treatment.
Steps to make an Advance Decision
Any adult over 18 with capacity can make an Advance Decision. There is no set form for making one, so you can write one yourself, if it meets the requirements of being valid and applicable. However, we recommend that you take legal advice when making an Advance decision to ensure that you do not make any mistakes when creating the document.
Before making as Advance Decision you should think about what you want and the situations you would want to refuse medical treatment in. It is also a good idea to speak to those close to you about your wishes.
The document should be in writing and signed and dated in the presence of a witness, who must also sign and date the document. If you want to refuse life-sustaining treatment you must also include a sentence in the document to state that your refusal applies even if your life is at risk or shortened as a result.
Any treatment refusals can be written in everyday non-medical language. However, a general statement that you do not want to be treated will not be specific enough to be followed. However, if you are refusing life-sustaining treatment, you can write that you refuse ‘all life-sustaining treatment’. This is still specific because it will be clear to a healthcare professional what is and is not life-sustaining in a particular situation. Some examples of life-sustaining treatment include artificial nutrition and hydration, breathing machines or cardiopulmonary resuscitation (CPR).
Make sure people are aware of your Advance Decision
• Ask your doctor to keep a copy of your Advance Decision with your medical records and ask your doctor to add the fact that you have an Advance Decision to your Summary Care Record. This is an electronic record of important information about your health that is accessible to any health or care professional 24 hours a day. Details of your Advance Decision will only be added if you specifically ask your GP to do so.
• Give a copy of your Advance Decision to anyone who would be contacted in an emergency
• Give a copy of your Advance Decision to anyone involved in your care
• Carry a ‘Notice of Advance Decision’ card
• Join MedicAlert, who can provide jewellery and products that can direct emergency services and healthcare professionals to your Advance Decision. You can call them on 0800 581 420
• An Advance Decision must specify when you want your refusals of treatment to apply. For example, you might want to refuse treatment if you have a cardiac arrest, a stroke or dementia
• If your Advance Decision contains a refusal of life-sustaining treatment this must be in writing and the Advance Decision must state that your decision applies even if your life is at risk or shortened because of refusal of treatment
• Your Advance Decision must be signed and witnessed
• Your Advance Decision will only be used if you lack mental capacity to decide about your medical treatment. Whilst you have mental capacity to make the decision, you can give or refuse consent to any medical treatment yourself and your Advance Decision does not need to be used
Change of heart
If something happens after you have made your Advance Decision that would have affected what you wrote within it, it may not be applicable. For example, if new treatments have been developed or you became pregnant after you wrote it, this could affect the decisions that you made.
Also, if you have acted inconsistently with what you have written in your Advance Decision, it may raise doubts over whether you have changed your mind. Because of this it’s a good idea to review and update any Advance Decision regularly. The more recently it has been reviewed, the more likely it is to reflect your current wishes. Most legal professional agree that an Advance Decision should be reviewed every two years, or sooner if your health changes.