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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 be unable, on a temporary or permanent basis, to make your own decisions about your treatment or communicate your wishes. In such a situation you would ‘lack mental capacity’ to make an informed decision and communicate your wishes. In these situations, doctors have a legal and ethical obligation to act in what they perceive to be 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.
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 statement 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 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 legally binding. An adult with mental capacity can refuse treatment for any reason, even if this might lead to their death.
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
There are very specific legal requirements that must be met before an advance decision to refuse life-sustaining treatment is legally binding. Life-sustaining treatment is defined legally 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. It is, therefore, very important that you discuss your wishes with Rudlings Wakelam so that we can ensure that your advance decision is correctly drawn up.
What an advance decision cannot be used for:
- 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.
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 decision 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. 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 set legal requirements.
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 but 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.