AA Legal Documents

Making a Living Will

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Contents

Introduction

Every adult with mental capacity has the right to agree to or refuse medical treatment. To make your advance wishes clear, you can use a Living Will. Living Wills can include general statements about your wishes ('advance statements'), which aren't legally binding (but which should be taken into account by medical professionals when deciding what is in your best interests and specific refusals of treatment called 'advanced decisions' (which may be legally binding in certain circumstances). An advance decision to refuse life-sustaining treatment must meet certain legal requirements (see 'Advance decisions').

When an advance decision is legally binding

An advance decision is only legally binding if it is valid and applicable to the particular circumstances existing at the time the treatment is being considered.

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  • If you have withdrawn the decision since you made it, at a time when you had the mental capacity to do so (which might include, but should not be limited to, consulting with next of kin)
  • If you have done anything which is inconsistent with the decision and suggests that it no longer represents your wishes
  • If you have since made a lasting power of attorney (in England and Wales) or a welfare power of attorney (in Scotland), 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
  • 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.

However, people in good health find it hard to imagine the whole range of situations that might befall them or the impact on them of refusing particular treatments, so it may be more effective for Living Wills to be compiled in the early stages of a disease or disability, as this will allow doctors to give realistic guidance about possible future situations.

Where you have, for example, 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.

Remember, though, that many serious illnesses such as cancer, failure of major organs (kidney, heart, liver, or lung), and serious brain disease such as Alzheimer's disease may be considered irreversible early on. There is no cure, but the patient may be kept alive for prolonged periods of time if the patient receives life-sustaining treatments and continue to enjoy some quality of life. Late in the course of the same illness, the disease may be considered terminal when, even with treatment, the patient is expected to die. You may wish to consider which burdens of treatment you would be willing to accept in an effort to achieve a particular outcome, and at what point in time and in what circumstances, you would consider further treatment effort to be futile and/or that your quality of life would be intolerably low. This is a very personal decision that you may wish to discuss with your doctor, family, or other important persons in your life.

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.

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 is advisable. The frequency with which you do this will depend on your particular circumstances and state of health.

You can change your advance decision at any time while you still have capacity to do so.

Notification of advance decisions

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 and possibly provided with a copy of it. If you change or cancel your advance decision or make a new one, you should make sure that relevant persons are informed.

Changing your mind

If you change your mind about what you have specified in your Living Will, you can cancel it by using a revocation of a Living Will document.