The importance of an advance directive or living will
An advance decision (also known as an Advance Directive or Living Will) is a legal way for someone to decide ahead of time what life-sustaining/ life-saving medical treatment they would not want in the future.
Someone wishing to make an Advance Directive needs to write it down, sign it and have it witnessed. It is legally binding as long as it complies with the Mental Capacity Act, in other words, as long as you have the mental capacity to write and sign the Advance Directive in the full knowledge of its implications.
The document must explain clearly what treatments are to be refused and under what circumstances. For example, if you want to refuse treatment that might result in death, then this needs to be stated clearly. If the Advance Directive is binding it takes the place of decisions made in the best interests of the patient by other people, such as doctors or relatives.
Advantages of an Advance Directive
An Advance Directive enables an individual to think about what they would like to happen to them in the event that they lose the capacity to take informed decisions about their care, examples of which include: the use of intravenous fluids or medication, the use of resuscitation, the use of life-saving treatment in specific illnesses where capacity or consent may be impaired (such as brain damage, head injury, stroke or dementia), specific procedures such as blood transfusions for Jehovah’s Witnesses.
Limitations of an Advance Directive
An Advance Directive cannot be used to ask for specific medical treatment, request something that is illegal, choose someone to make decisions for you, unless that person has been given lasting power of attorney, or refuse treatment for a mental health condition (doctors are empowered to treat such conditions under Part 4 of the Mental Health Act).
Management of an Advance Directive & Living Will
The clinical team needs to be aware that such a provision exists. It could be recorded in your relatives medical notes (forms available here). Alternatively, a directive may have a healthcare proxy, an individual who may also have ‘lasting power of attorney’. The role of the proxy is to ensure that the wishes of the person are carried out. The proxy does not have the power to make decisions and the wishes of the patient may not be over-ruled.
Are there things you cannot include in an advance decision?
You cannot include the following:
- to refuse basic care that is essential to keep you comfortable, such as nursing care, pain relief, keeping you warm,
- to refuse the offer of food or drink by mouth
- to ask for anything that is against the law such as euthanasia or help to take your own life
- to demand specific medical treatment – no one can insist on treatment that healthcare professionals consider clinically unnecessary, futile or inappropriate
- to refuse treatment for a mental disorder if you are to be detained under the Mental Health Act 1983
- to refuse treatment when you still have capacity to make a decision.
Do I need to involve a doctor or solicitor?
You do not have to involve a doctor when making an advance decision but a doctor can: help you understand the consequences, advantages and disadvantages of what you are proposing; help you phrase your wishes, so you avoid making unclear statements that could raise doubts in future about its applicability.
If you have a terminal illness, you may wish to talk to the medical team involved in your care. They can help you relate specific decisions to the likely course of your illness, understand the consequences of refusing or opting for a particular treatment and verify you had mental capacity at the time you prepared the advance decision. Involving your GP or medical team means they record your wishes in your medical notes.
Reviewing your advance decision as your illness progresses will ensure your notes accurately reflect your wishes. This can form part of a wider on-going discussion about your future care and preferences, often referred to as ‘advance care planning’. You do not have to take legal advice but a solicitor could help you express your wishes clearly.
Does an advance decision need to be in writing?
An advance decision only needs to be in writing if you want to refuse life sustaining treatment. If you are not wanting to refuse life sustaining treatment, you would create a valid advance decision simply by telling your doctor you would not want a particular type of treatment in certain circumstances in the future.
It is best practice for the doctor to confirm you understand the consequences of what you are asking and record this conversation in your medical records, along with details of anyone else present who heard what you said and their role in the conversation.
Putting it in writing and recording it in your medical notes avoids uncertainty over the validity of your advance decision and increases the likelihood that any doctor treating you is alerted to it. There is no dedicated form to use if you want to put an advance decision in writing.