Some people are unable to make decisions about a proposed treatment because they lack mental capacity.
Mental capacity is the ability to understand and retain information, and to make decisions based on that information. You may lack mental capacity because you have a disorder like dementia, for example. If you lack mental capacity, a doctor must act in your best interests.
Some people make an advance decision about which treatments they are willing to accept should they become ill. Your relatives aren’t allowed to give consent or make decisions about your treatment on your behalf, unless you have given them specific permission to do so by setting up a personal welfare Lasting Power of Attorney (LPA).
An LPA is a legal document that appoints one or more people (attorneys) to make decisions on your behalf should you become incapable of making your own decisions in the future. An LPA must be made while you are able to understand what it is and what it means for you. It is only valid in England and Wales.
The personal welfare LPA only allows your attorney to make decisions about your care and treatment. They can’t make any decisions about any of your property and affairs - such as your finances - which are covered by a property and affairs LPA.
There is a fee to register an LPA. If you are receiving certain benefits or have a low income you may be exempt from paying the registration fee or only have to pay part of it.
You can get more information about registering an LPA from a social worker at the hospital, the Office of the Public Guardian or organisations such as Age UK.
If you’re unable to make a decision about your medical treatment and have no family or friends to represent your views‚ the medical staff are required to appoint an Independent Mental Capacity Advocate (IMCA) to represent your interests.
In Scotland the legal document that appoints one or more people to make decisions on your behalf about your care and treatment, should you become incapable, is called the Welfare Power of Attorney (WPA). The WPA has to be registered and there may be a fee to do this. You can get more information about WPAs from a social worker at the hospital, the Office of the Public Guardian (Scotland) and organisations such as Age Scotland.
In Northern Ireland it is currently not possible to appoint other people to make decisions about your care and treatment on your behalf. New legislation is being considered by The Department of Health, Social Services and Public Safety, and is expected in 2011.
Advance decisions and statements (living wills or advance directives)Back to top
Normally you will discuss with your doctor how you would like to be treated and which treatments you don’t want to have. Some people write down their choices in advance so that, if they become unable to discuss things with their doctors and incapable of making any decisions, the doctors will still know what their wishes are.
Instructions about the treatments you do or don’t want are called advance statements and advance decisions. They are sometimes known as living wills.
- An advance statement is a general statement of your views and wishes. It can indicate the treatment you would prefer and can include non-medical things, such as your food likes and dislikes or religious beliefs. An advance statement is not legally binding, but your doctors should take it into account when deciding what is best for you.
- An advance decision is a decision to refuse treatment, such as chemotherapy or artificial feeding. In England and Wales an advance decision is legally binding under the Mental Capacity Act 2005, and must be respected by your doctors. In Scotland an advance decision is known as an advance directive.
Advance statements and decisions can also let your family know your wishes, so that they too can do what you would want.
An advance statement can include who you would like to be consulted about your care if you’re unable to make those decisions yourself. If you want to give these people the power to make decisions on your behalf you will need to create a Lasting Power of Attorney or LPA. The LPA can include your advance statement so that the people named in the LPA take your wishes into account when deciding what is best for you.
An advance decision must indicate exactly what treatment you want to refuse and in which situation. It can only be made by someone aged 18 or over who has the mental capacity to make the decision.
In Northern Ireland there is currently no legislation covering the use of advanced decisions, statements or living wills.
You can get information about advance statements and decisions from a social worker or from some organisations such as Age UK. You may find it helpful to read the leaflet Planning for your future care: A guide, which has been produced by The NHS National End of Life Care Programme. You can ask for a copy from your GP or at your local hospital information centre.
Doctors and other health professionals aren’t allowed to share details of your diagnosis and treatment with other members of your family without your permission. They also have to involve you in any discussion about your care. Discussions are not allowed to take place without you, unless you have given permission or are incapable of making decisions about your care and have registered an LPA.
Your family members may want to know what your situation is, so that they can provide appropriate help and support. You may find it helpful to have your partner or a family member with you during discussions about your care.