When you are ill, you can usually discuss treatment options with your Doctor and then jointly, reach a decision about your future care.
However, you may be admitted to hospital when unconscious or become unable on a temporary, or permanent basis, to make your own decisions about your treatment, or communicate your wishes. This may happen, for example if you have a car accident, a stroke, or develop dementia.
To use the technical term – you would ‘lack mental capacity’ to make an informed decision and /or communicate your wishes. In such situations, doctors have a legal and ethical obligation to act in your best interests.
One exception to this is if you have made an advance decision refusing treatment. If this decision is valid and applicable to the circumstances, medical professionals providing your care are bound to follow it.
The term ‘living will’ could be used to refer to either an advance decision / directive or an advance statement. An advance decision is a decision to refuse treatment; an advance statement is any other decision about how you would like to be treated. Only an advance decision is legally binding, but an advance decision should be taken into account when deciding what is in your best interests.
What is an advance statement?
This is a general statement of your wishes and views. It allows you to state your preferences and indicate what treatment or care you would like to receive should you in the future, be unable to decide or communicate your wishes for yourself. It can include non medical things such as your food beliefs or preferences, or whether you would prefer a bath to a shower.
It could reflect your religious or other beliefs and any aspects of life which you particularly value. It can help those involved in your care to know more about what is important to you. It must be considered by the people providing your treatment when they determine what is in your best interests, but they are not legally bound to follow your wishes.
Advance statements can also be used to let the people treating you know who you would like to be consulted, at a time a decision has to be made, if you are unable to make that decision yourself.
What is an advance decision to refuse treatment?
An advance decision to refuse treatment is the only type of living will that is legally binding. An adult with mental capacity can refuse treatment for any reason, even if this might lead to their death. However, no one is able to insist that a particular medical treatment is given, if it conflicts with what the medical professionals providing the treatment conclude is in the patient’s best interests. This is why an advance decision can only be a refusal of treatment.
An advance decision to refuse treatment must indicate exactly what type of treatment you wish to refuse and should give as much detail as necessary about the circumstances under which this refusal would apply. It is not necessary to use precise medical terms, as long as it is clear what treatment is to be refused in what circumstances.
An advance decision can only be made by someone over age 18 who has the mental capacity to make the decision. This means they must be able to understand, weigh up and retain the relevant information in order to make the decision to refuse treatment; and they are then able to communicate that decision.
How to make an advance decision to refuse treatment
An advance decision does not have to be in writing, unless it is a decision to refuse life-sustaining treatment (see the next section below for the legal requirements for this type of decision). Verbal instructions can amount to a valid advance decision but there is more risk that a verbal refusal of treatment would not be carried out. The person providing treatment may not be aware of it, or there could be uncertainty about its validity or applicability.
For example, a statement made by a patient during a discussion with their doctor that they would not wish to have a particular type of treatment in certain circumstances in the future, can be a valid advance decision without it being put in writing. It would be best practice for the doctor to record the statement in the patient’s medical records, but it can still be valid if this is not done. Even if you are putting your advance decision in writing yourself, it is a good idea to discuss it with your doctor.
To avoid uncertainty over the validity of an advance decision you should put it in writing, or ask someone else to write it down for you if possible.
Remember that the above points are not legal requirements, but they can help to avoid uncertainty over the validity and applicability of your advance decision.
There are legal requirements if you are making an advance decision to refuse life-sustaining treatment.
How to make an advance decision to refuse life-sustaining treatment.
If you want to make an advance decision to refuse life-sustaining treatment, it must meet certain requirements set out in the Mental Capacity Act.
Life-sustaining treatment is defined in the Act as treatment which, in the view of the person providing health care to the person concerned, is necessary to sustain their life. This could include artificial nutrition and hydration to someone who cannot eat or drink by mouth.
The legal requirements for a valid advance decision to refuse life-sustaining treatment are as follows:
• The decision must be in writing. You can ask someone else to write it down if you cannot do it yourself
• You must sign the document. You can instruct someone to sign it on your behalf in your presence if you cannot sign it yourself
• Your signature (or the signature of the person signing on your behalf) must be witnessed. The witness must also sign the document in your presence
• You must include a written statement that the advance decision is to apply to the specific treatment even if your life is at risk
Advance decisions made before 1st October 2007
The part of the Mental Capacity Act relating to advance decisions came into force on 1st October 2007. An advance decision made before that date can still be valid if it meets the requirements set out in the Act.
If you made an advance decision refusing life-sustaining treatment before 1st October 2007, you should review it to make sure it meets the requirements of the Act (see below). It is likely that many such advance decisions will not meet those requirements; in particular, your decision must include a statement that it is to apply even if your life is at risk. You should remake your decision if your original decision does not meet the requirements of the Mental Capacity Act.
Implementation of the Mental Capacity Act 2005
The Mental Capacity Act 2005 provides a legal framework to help empower people to make their own decisions and to make clear what actions carers and family can take. It puts the law on advance decisions / directives(or living wills) on a clear statutory basis for the first time.
The rules relate particularly to advance decisions to refuse treatment, including refusal of life-sustaining treatment.
The Act is fully in force, including the parts on advance decisions, from 1st October 2007. The following explains the law on advance decisions.
There is a Code of Practice to the Mental Capacity Act, which gives guidance on how it will work in everyday situations. Among other things, it explains how to assess whether someone lacks capacity to make a particular decision, and what it means to act in someone’s best interests.
Anyone dealing with an advance decision, in particular, medical staff providing care to someone who has made an advance decision should have regard to the Code of Practise.
There are transitional arrangements for people who made an advance decision to refuse life-sustaining treatment before 1st October 2007 but who have since lost the mental capacity to remake that decision.
A decision made before 1st October 2007 which does not meet the requirements (to be signed and witnessed and to include a statement that it will apply even if life is at risk) can still be valid and applicable if:
• it is in writing
• the person providing the treatment has a reasonable belief that the advance decision was made before 1st October 2007, and
• the person providing the treatment has a reasonable belief that the person making the advance decision has lacked capacity to amend it since 1st October 2007. The normal requirements regarding validity and applicability must also be met
• practice
Deciding if an advance decision is valid and applicable.
You should take steps to make sure that the people providing your treatment will be aware of your advance decision at the relevant time. This could mean discussing it with your GP, or other treating doctors, while you still have capacity to do so, and making sure that a copy of your decision is kept in your medical notes. It would also be helpful to make sure that your family and friends are aware of the decision. If the person providing your treatment is aware of your advance decision, they must then consider whether it is valid and applicable to the particular circumstances.
When deciding whether an advance decision is valid, the person providing the treatment should try to find out:
if you have withdrawn the decision since you made it:
• at a time when you had the mental capacity to do so, and if you have done anything which is inconsistent with the decision and suggests that it no longer represents your wishes
• and if you have since made a Lasting Power of Attorney, giving someone else the authority to make the decision consenting to or refusing the particular treatment
When deciding whether an advance decision is applicable to the particular circumstances, the person providing the treatment must:
• assess whether you actually still have mental capacity to make the particular decision about your treatment at the time it has to be made (they must start from the assumption that you have capacity and the advance decision will only be relevant if there is evidence that this is not the case)
• check that the treatment and circumstances are the same as those referred to in the decision, and consider whether there are any new developments that you didn’t anticipate at the time you made your decision, which could have affected your decision; for example new developments in medical treatment, or changes in your personal circumstances.
Professionals providing your medical treatment are protected from liability for not providing treatment if they reasonably believe there is a valid and applicable advance decision.
They can provide treatment if they are in doubt over the existence, validity or applicability of an advance decision, and they are again protected from liability.
Why make an advance decision?
You may wish to make an advance decision if you have strong feelings about a particular situation that could arise in the future. This might relate to having a limb amputated following an accident or having a blood transfusion.
More commonly, you may have been told that you have a terminal illness or form of dementia. You may wish to prepare an advance decision indicating the type of treatment you would not want to receive in the future. Making an advance decision may give you peace of mind in knowing that your wishes should not be ignored if you are unable to take part in the decision making process at the relevant time.
Considering making an advance decision provides an opportunity to talk to and ask questions of your medical team during the early stages of an illness rather than delaying it until it is more difficult to participate. It can also provide an opportunity to discuss what may be difficult issues with family and friends.
You do not have to make an advance decision. You may decide to leave it to the healthcare professionals providing your treatment to decide what is in your best interests. When deciding this, they should take into account any evidence they have of your past wishes, your beliefs and values; and they should consult your friends, family and carers where appropriate. They may decide that what is in your best interests is not the same as what you would have decided to do yourself.
Lasting Powers of Attorney
Alternatively, you could consider creating a Lasting Power of Attorney, which would allow you to choose who should make decisions about your treatment if you are not able to do so yourself. There is a section in the personal welfare LPA document where you can specify if you want your attorney(s) to have the power to make decisions about life-sustaining treatment.
What an advance decision cannot be used for
An advance decision cannot be used to:
• ask for anything that is illegal such as euthanasia or for help to commit suicide
• demand care the healthcare team considers inappropriate in your case
• refuse the offer of food and drink by mouth
• refuse the use of measures solely designed to maintain your comfort such as providing appropriate pain relief, warmth or shelter
• refuse basic nursing care that is essential to keep you comfortable such as washing, bathing and mouth care
Who to consult about an advance decision
It is always advisable to discuss your intentions with a medical professional such as your GP and your family and friends.
If you have a terminal illness, you may wish to speak to the doctor involved in your care. He / she can help you understand the consequences of refusing or opting for a particular treatment and relate specific decisions to the likely course of your illness. This doctor can also help you express your wishes clearly and verify you were competent at the time you prepared and signed the document.
Reviewing your advance decision
It is important for the people providing your treatment to feel confident that you have not changed your mind since your advance decision was made. If new or improved medical treatments are now available, or your personal circumstances have changed, its validity may be questioned if you signed it many years ago. You will also want to check it on a regular basis to be sure it continues to reflect your views.
Therefore a regular review, after which you sign and date that you have reviewed it, is advisable. The frequency with which you do this will depend on your particular circumstances and state of health. Make a note of who has copies of your advance directive so you can tell them if you revise it.
You can change your advance decision at any time while you still have capacity to do so. This can either be verbally or in writing (unless it is a decision to refuse life-sustaining treatment), but to avoid uncertainty it is advisable to record the changes in writing if possible. Any changes to an advance decision to refuse life-sustaining treatment must be in writing and follow the legal requirements mentioned above.
How to cancel an advance decision
You can cancel an advance decision at any time while you still have capacity to do so. The cancellation does not have to be in writing; a verbal statement cancelling the decision should be respected. To avoid the risk that the relevant people do not know you have cancelled your decision, it is advisable to put the cancellation in writing, if possible, and to inform everyone who was aware of the decision’s existence. You should destroy the original document, or mark on it that it has been withdrawn.
The relationship between advance decisions and Lasting Powers of Attorney
The Mental Capacity Act brings in a new system of Lasting Powers of Attorney (replacing Enduring Powers of Attorney). You can set up a Lasting Power of Attorney (LPA) to give one or more people the power to make decisions about your personal welfare, including medical treatment, if you do not have mental capacity to make the decision yourself.
If you have made an advance decision refusing treatment this will become invalid if you later create an LPA giving someone else the power to refuse medical treatment on your behalf, when you no longer have capacity to make that decision yourself.
If you make an advance decision after creating an LPA, this will overrule the LPA. Your attorney cannot make a decision about treatment which you have made an advance decision to refuse, as long as the advance decision was made after you signed the LPA.
What happens if there are disagreements about an advance decision?
The senior healthcare professional treating you is responsible for making the decision as to whether there is a valid applicable advance decision. If there is a dispute over this, an application can be made to the Court of Protection.
The Court of Protection can make a declaration on:
• whether the person has mental capacity to make the decision themselves at the time it must be made (in which case, the advance decision does not come into play)
• whether the advance decision is valid. If you create a Lasting Power of Attorney (LPA), you could record an advance statement in the LPA document. An LPA can be used if you want to give someone else, or more than one person, the power to make decisions about your care and treatment if you are not able to do so yourself. Your attorney(s) must take your advance statement into account when deciding what is in your best interests. See below for more information about LPAs
• whether the advance decision is applicable to the particular treatment and circumstances
The Court of Protection cannot overturn a valid and applicable advance decision; so it cannot order that treatment should be provided if this has been refused in a valid advance decision.