For some people diagnosed with dementia, coming to terms with an uncertain future is one of the hardest things to have to face. Making decisions in advance, about your healthcare and life-style choices, whilst you’re still able to, is very important so that your wishes and preferences can be respected later on.
The two main mechanisms for ensuring this are known as advance statements and advance decisions. They are similar but are not the same thing. A person can make both.
An ‘advance statement’ expresses a general preference about a person’s future care. For example:
- Where a person would like to live.
- The kind of care they wish to receive.
- Food and drink preferences (e.g. a life-long vegetarian).
- Preferences related to their religion or cultural background.
- A list of people (partner, family, friends etc.) whose opinions matter.
The process of making an advance statement can help to start a conversation about what future care someone does and doesn’t want. It can be made verbally or written down. By making a written record, there is less likelihood of misunderstanding.
An advance statement is not a legal document and health and medical professionals do not have to adhere to its directions. However, they do have to have good reason not to follow it and should where at all possible, take into account someone’s prior wishes.
For more information on advance statements, visit the NHS website.
An ‘advanced decision’ is a record of a person’s wish to refuse life-sustaining treatment. Examples of life-sustaining treatment include: being given food and drink by tube if it is no longer possible to take it by mouth; organ transplant; chemotherapy or other cancer treatments; using a machine to help you breathe; restarting your heart using CPR (cardiopulmonary resuscitation). An advanced decision cannot be used to refuse basic care to keep you comfortable such as pain relief, taking food and drink by mouth etc. or, to demand a specific type of treatment that may be deemed clinically unnecessary or inappropriate.
Making an advance decision is a specialised process and must be done properly to be ‘valid’ and legal. The Mental Capacity Act 2005 has details about determining whether or not someone has the mental capacity to make an advanced decision. They must also be very carefully written to ensure they are ‘applicable’ to a specific type of medical circumstance. If the wording is unclear or vague, a doctor or medical professional may not follow it. For more information on making sure an advance decision is valid, see the “Further resources” section below.
Advance decisions cannot be used to insist on, or refuse, treatments that are essential for life. This is not the same as advanced refusal of cardiopulmonary resuscitation (CPR) for cardiac arrest (heart attack).
Alzheimer’s Society: advice on advanced statements and advance decisions – https://www.alzheimers.org.uk/get-support/legal-financial/advance-decision-living-wills
Oxfordshire County Council: Making decisions when you can’t – https://www.oxfordshire.gov.uk/residents/social-and-health-care/adult-social-care/legal-and-money-issues/making-decisions
Mental Capacity Act 2005 – http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf
NHS: Information on what makes an advance decision valid and what it can cover – https://www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/