An Advanced Decision to Refuse Treatment (formally known as a Living Will) allows you to record any medical treatments that you do not want to be given in the future, in case you later lack capacity and cannot make or communicate a decision for yourself. Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements.
What is capacity?
Capacity is the ability to make a decision for yourself. It is time and decision specific. This means that whether or not you have capacity depends on when the decision needs to be made and what the decision is. So, you might lack capacity to make a decision on one day but be able to make that decision at a later date. This might be, for example, because you have dementia and your ability to remember information differs from one day to the next.
Also, you might have capacity to make some decisions but not others. For example, you might have capacity to decide what you want to eat every day but not to understand what will happen if you refuse life-sustaining treatment.
You lack capacity to make a decision if
- You have an impairment or disturbance of the mind or brain (for example,
- because you are unconscious, have dementia, a mental health condition,
- a brain injury or a stroke)
- and you cannot do one of these things:
- understand information relating to the decision
- retain that information for long enough to make the decision
- take that information into account when making the decision
- communicate the decision
The law says that people must be assumed to have capacity unless it is proven otherwise. However, if a decision needs to be made about your health or care and a healthcare professional thinks that you might lack capacity, then they will need to assess whether or not you have capacity to make that decision.
When will my Advance Decision be legally binding?
The Mental Capacity Act 2005 (MCA) says that an Advance Decision will be legally binding if it is “valid” and “applicable”. This means that if a healthcare professional knows that you have a valid and applicable Advance Decision and they ignore it, they could be taken to court.
How do I make sure my Advance Decision is valid?
For your Advance Decision to be valid you must:
- Be 18 or over
- Have capacity to make your Advance Decision for example, you must be able to understand the consequences of refusing medical treatment.
- Say what treatments you want to refuse. Your refusals can be written in everyday non-medical language. A general statement that you do not want to be treated is not 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).
- Say the circumstances when you want to refuse treatment. 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 it must also:
- Be in writing and state that the Advance Decision applies even if your life is at risk or shortened as a result of refusing treatment. The law says you must include a statement like this because it shows that you have considered your decisions and you understand the consequences of refusing life-sustaining treatment.
- Be signed and witnessed. The witness must watch you sign your Advance Decision and then also sign it themselves. If you cannot sign your Advance Decision yourself, the person who signs on your behalf cannot be the same person as your witness. An Advance Decision does not need to be signed or endorsed by a solicitor to be valid.
When will my Advance Decision be applicable?
Even if your Advance Decision is valid, it will only be legally binding if it is also applicable. Your Advance Decision will be applicable if:
- You lack capacity to make a decision about your medical treatment. Your Advance Decision will only apply if you do not have capacity to make the decision in question. While you have capacity to make the decision you can give or refuse consent to any medical treatment yourself and your Advance Decision will not be used.
In essence the Advance Decision covers the circumstances you are in. Your Advance Decision will only apply if you are in a 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 heart attack or stroke your Advance Decision will not apply.
- It covers the treatments in question. 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.
- There is no reason to think that you have changed your mind about what you have written in your Advance Decision. 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.
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 about what you have written. For example, if you become unwell and accept a treatment while you have capacity that you have refused in your Advance Decision this could suggest that you have changed your mind. Because of this you should review and if necessary update your Advance Decision regularly. The more recently it has been reviewed, the more likely it is to reflect your current wishes. We recommend you review your Advance Decision every two years, or sooner if your health changes.
What if I also have a Lasting Power of Attorney for Health and Welfare?
If you make a Lasting Power of Attorney for Health and Welfare (LPA) after you have made an Advance Decision, then your attorney (the person appointed to make decisions for you) might be able to override what you have written in your Advance Decision.
Whether or not your attorney can override your Advance Decision depends on whether you gave them the power to make the decision in question. For example, when you make an LPA you have to choose whether you want your attorney to be able to make decisions about life-sustaining treatment. If they do have the power to make the decision, and you made your LPA more recently, then your Advance Decision is not valid and your attorney can override it.
Can I change my Advance Decision?
While you have capacity you can change your Advance Decision at any time. To do this you should make a new one, give copies to anyone involved in your care and tell those people to destroy the old version.
If you want to cancel your Advance Decision completely you should destroy it and advise anyone who has a copy to do the same. Your Advance Decision will not be valid if it has been withdrawn or cancelled.
I have a Living Will, is it legally binding?
A Living Will is the old name for an Advance Decision. If you made your Living Will before October 2007 (when the MCA came into force) then it may not meet the criteria that an Advance Decision needs to meet to be valid. If it is not valid then it will not be legally binding. This means that a healthcare professional will not have to follow it. If your Living Will does not meet all of the criteria listed above, then you should make a new Advance Decision.
For further information on Advance Directions or to draw one up, why not contact one of Alexander JLO’s experts in our private client and wills department to see what we can do for you?