Medical treatments require consent (this means a person needs to agree with them). But in case you're unable to make decisions about your healthcare in the future, it's possible to make an advance decision.
An advance decision is used to specify which medical treatments you would accept or refuse under certain circumstances - either because you're unconscious, can't communicate or have lost the capacity to make decisions.
It's sometimes called a Living Will, an Advance Decision to Refuse Treatment or, in Scotland, an Advance Directive.
An advance decision can be made if you’re aged 18 or over, to specify which medical treatments you would accept or refuse under certain circumstances, even if this will cause an earlier death.
These can be specific or general and could include the following:
- the use of antibiotics in the case of severe bacterial infection
- whether you want to be put on a drip if swallowing becomes too difficult
- whether you want to be fed artificially
- what happens if your heart or breathing stops
- whether your care should concentrate on providing comfort and peace
- whether you would like to be told by doctors how serious your condition is, or if you would rather not know
It is important to make an advance decision when you are mentally competent. It will be legally binding in England and Wales if:
- you are an adult over the age of 18
- you are mentally able and not experiencing mental distress when you make the advance decision
- you understand what may happen by refusing or opting for a particular treatment
- you specify the treatment to be refused and specify the circumstances in which this refusal would apply - if this is not clear, your doctors may not act
- you understand that you cannot insist on receiving any particular treatment that your doctors consider inappropriate
- you are not pressurised or influenced by anyone else
- the advance decision is the most recent expression of your wishes
- you become incapable of making any decisions because you are either unconscious or mentally incapable of making your own decisions
You may already have raised these issues with your doctors or Parkinson’s nurse and had the opportunity to discuss it with them.
In some cases the medical team may even outline your wishes in a letter, so everyone has a copy of your decisions. This is helpful if you have problems with writing or speaking, if English is not your first language, or if you have learning difficulties or disabilities such as sight difficulties.
If your advance decision includes refusing life-sustaining treatment, there are some special requirements. It must be in writing and signed and dated by you and a witness. It must also contain a clear written statement saying the advance decision is to apply to the specific treatment, even if your life is at risk.
Advance decisions should never be confused with voluntary euthanasia or assisted suicide.
Not every situation can be planned for in an advance decision and it will need to be checked by the healthcare provider when treatment is needed, to make sure it applies to the particular situation.
You should keep your advance decision under review and amend it if circumstances change, or if new treatments become available.
It is a good idea to check your advance decision and re-sign it and date it every few years, to confirm that it still reflects your wishes.
It’s important to keep an up-to-date copy of your advance decision with your GP, or healthcare professional, your family and your solicitor. You may also want to carry a note of your wishes with you.
There are other ways you can document your wishes for your future care. An Advance Statement (also called a Statement of Wishes) is a general statement of what you want and what is important to you. It is written down but is not legally binding like the advanced decision.
If you have made a Health and Welfare Lasting Power of Attorney you should take care that this and the advance decision don’t conflict with each other.
In Scotland you can express your wishes about how you would like to be treated in a social, medical and care situation when you are no longer able to make a decision.
You can include your wishes in a Welfare Power of Attorney or an Advance Medical Directive.
It is important to know that in Scotland your wishes are not legally binding. It is possible that doctors could override your wishes if they felt that was for your benefit.
But, according to the law your past and present wishes should be taken into account, so it is important that you discuss your advance care treatment with your family, GP and people responsible for your care. Your solicitor will advise you on the best way to record your wishes.
There is currently no legislation in Northern Ireland covering the use of advance decisions.
- The Advance Decisions to Refuse Treatment (ADRT) website is supported by the NHS and outlines options in advance care planning.
- See Age UK's information and leaflets on legal issues such as Advance Decisions, Living Wills and Power of Attorney.
- Compassion in Dying provides free forms that meet all of the criteria to be legally binding.
Talking about life ahead
You may be thinking about the best way to talk to a loved one about the impact of Parkinson's on everyday life or planning for the future.
Making an advance decision: Richard's story
When Richard was diagnosed with Parkinson’s, he knew he wanted to maintain control of his treatment, even if he became incapacitated or was unable to communicate his wishes. This led him to making an Advance Decision to Refuse Treatment (ADRT). He shares his story.
Last updated March 2021. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected]