A living will, also known as an advance decision, provides an opportunity for you to lay out your wishes regarding medical treatment and any medical interventions in the final stages of your life. Living wills can include general statements about your wishes, which aren't legally binding, and specific refusals of treatment known as advance decisions which are legally enforceable.
At the moment, the law in the UK respects the right of people with capacity to be able to define, in advance, which medical procedures they will and will not consent to at a time when they have become incapable of making or communicating that decision.
Every adult who has mental capacity has the right to agree to or refuse medical treatment. The sorts of treatments usually covered by living wills are artificial feeding, mechanical ventilation, antibiotic therapy and resuscitation. In England, valid advance decisions are legally enforceable under the Mental Capacity Act 2005 and must be followed by healthcare professionals. The Act states that the wishes of the adult should be taken into consideration when acting or making a decision on their behalf.
Like a normal will, you may want to include some personal details and demands. Preparing a living will also provides a good opportunity to state how you might want to spend your final weeks, whether you wish to die at home or in hospital, whether you would like specially chosen music and what sort of funeral you would like. General written statements about your wishes such as these (sometimes called advance statements) aren't legally binding, in contrast to specific refusals of treatment. However, health professionals do have to take them into account when deciding on a course of action. Family and friends can also use them as evidence of your wishes.
You could also make your views known verbally, for example, when discussing treatment with a health care professional, but having it written down may make things clearer for everyone.
What might an advance /general written statement include?
Your statement could include:
- treatment you would be happy to have, and in what circumstances
- treatment you would want, no matter how ill you were
- treatment you would prefer not to have, and in what circumstances
- someone you would like to be consulted about your treatment at the time a decision needs to be made
It can also include a specific refusal of treatment, which as mentioned above is legally enforceable. A valid advance decision such as this has the same effect as a refusal of treatment by a person with capacity: the treatment cannot lawfully be given - if it were the doctor might face civil liability or criminal prosecution.
To be valid an advance decision needs to:
- be made by a person who is 18 or over and has the capacity to make it
- specify the treatment to be refused (you don't have to use medical or technical jargon, just describe it!)
- specify the circumstances in which this refusal would apply
- not have been made under the influence or harassment of anyone else
- not have been modified verbally or in writing since it was made
What if I want to specifically include a refusal of life-sustaining treatment?
Advance decisions refusing life-sustaining treatment must:
- be in writing (it can be written by a family member, recorded in medical notes by a doctor or on an electronic record)
- be signed and witnessed (it can be signed by someone else at the persons direction - the witness is to confirm the signature not the content of the advance directive)
- include an express statement that the decision stands 'even if life is at risk'
If you are writing an advance statement, you should bear in mind that new drugs or treatments may be introduced in the future. So you could, for example, state that you would prefer not to receive certain current treatments but would allow for new treatments.
You should include your name, address, date and signature in the advance statement. It's also advisable to say you understand what you're doing and are capable of making such decisions. You may want to get the statement signed by a witness who can say that you had full mental capacity at the time.
What can't an advance decision include?
You can't use an advance decision to:
- ask for your life to be ended
- force doctors to act against their professional judgement
- nominate someone else to decide about treatment on your behalf
Living wills and mental capacity
You can still make a living will if you're diagnosed with a mental illness, as long as you can show that you understand the implications of what you're doing. You need to be competent to make the decision in question, not necessarily to make other decisions.
It's best to put your wishes in writing and explain:
- why you've made your decision about how you do or don't want to be treated
- what you understand about the treatment you're agreeing to or refusing
- why you're making these decisions now
Who needs to know about a living will?
It's important that your living will is entered into your medical notes so that in an emergency it is found and acted upon. You should consider sending a copy to your doctor and to any hospital which is treating you, and also send a copy to your nearest relatives. If your living will is verbal, you need to make sure close relatives or friends are aware. In addition, the BMA also suggests that patients who have drafted an advance statement carry a card indicating that fact.
When might my advance decision not be followed?
A doctor might not act on an advance decision if:
- the person has done anything clearly inconsistent with the advance decision which affects its validity (for example, a change in religious faith)
- the current circumstances would not have been anticipated by the person and would have affected their decision (for example, a recent development in treatment that radically changes the outlook for their particular condition)
- it is not clear about what should happen
- the person has been treated under the Mental Health Act
A doctor can also treat if there is doubt or a dispute about the validity of an advance decision and the case has been referred to the court.
Changing a living will and further advice
You should review your living will on a regular basis to make sure you're happy with it. This is particularly important if your situation changes. You can change or cancel as long as you are able to think rationally and clearly explain what you want to happen. Ideally, put things in writing and destroy old versions.
Although it is possible to write a living will without seeing a solicitor, it is advisable to seek out a specialist in such matters, to make sure that all the requirements and formalities are dealt with properly and efficiently. Seeing a specialist solicitor means that it is more likely that your wishes will be followed in the event that your living will is needed.
Make a Living Will to make sure your wishes are listened to.
