There may come a time when you are unwell and cannot tell the people around you what you do and do not want. By making plans now, you can record your preferences for treatment and care so that if you are ever in this situation, your wishes are known and can be followed where possible.
Recording your wishes allows you to express who you are and what is important to you. This gives you control over your treatment and care, and reassurance that the right decisions will be made. It can also be a good way to start conversations with your friends and family about what you want in the future.
Who can make decisions about my treatment and care?
While you have capacity you have the right to make decisions about your treatment and care. You can decide if you want to consent to or refuse treatment or care, even if doing so may shorten your life or put you at risk.
If you lack capacity to make a decision for yourself, and you have not recorded your wishes, the health or social care professional in charge of your care will decide how to treat you. They must make decisions based on what they think would be in your best interests, but there is no guarantee that this would be what you would choose for yourself.
The Mental Capacity Act 2005 sets out a range of ways by which people can plan for a time when they are no longer able to make decisions for themselves.
The following options will direct you to further information about these provisions, as well as other useful information to help you to plan for the future.
Mental Capacity and Best Interests
Capacity is the ability to make a decision for yourself. Your capacity to make a decision depends on when the decision needs to be made, and what the decision is.
You might lack capacity to make a decision on one day but be able to make that decision at a later date. For instance, this might be because you have dementia and your ability to remember information differs from one day to the next.
You might also have capacity to make some decisions but not others. For example, you might have capacity to decide what you want to eat each day, but not to make a decision about life-sustaining treatment.
The law says that people must be assumed to have capacity unless it is proven otherwise.
How does someone decide what is in my best interests?
If you lack capacity to make a decision then someone may have to make that decision for you. This could be a doctor, social worker or social care professional depending on what decision needed to be made. If this happens they have to act in your best interests.
A best interests decision is based on your values, beliefs and preferences. Where possible it should be the decision you would make for yourself if you could.
Lasting Power of Attorney
A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.
This gives you more control over what happens to you if you have an accident or an illness and can’t make your own decisions (you ‘lack mental capacity’).
You must be 18 or over and have mental capacity (the ability to make your own decisions) when you make your LPA.
You don’t need to live in the UK or be a British citizen. There are two types of LPA:
- health and welfare
- property and financial affairs
You can choose to make one type or both.
There is no need to involve solicitors and you can make a lasting power of attorney (LPA) online or by using paper forms.
Advance Decisions to Refuse treatment
An Advance Decision allows you to write down any treatments that you don’t want to have in the future, in case you later become unable to make or communicate decisions for yourself.
It will only be used if you can’t make or communicate a decision for yourself. The legal name is an Advance Decision to Refuse Treatment, and it’s also sometimes called a ‘Living Will’ or an ‘Advance Directive’.
Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements. This means that if a healthcare professional knows you’ve made an Advance Decision, they have to follow it. If they ignore an Advance Decision then they could be taken to court.
There is no set form for making an Advance Decision. Compassion in Dying provides further information on Advance Decisions, free forms or you can make one online using their free website: www.mydecisions.org.uk
An Advance Statement allows you to record your wishes, feelings, beliefs and values in case you later become unwell and need care or medical treatment.
It provides a space for you to write down anything that’s important to you in relation to your health and wellbeing. For example, you can use it to explain how you’d like to be cared for or to detail any values or beliefs that inform the decisions you make. It gives those around you, such as your family, carers, and healthcare team, a clear idea of what you want if you can’t communicate this yourself.
An Advance Statement helps to make sure that, if you lack capacity to make and communicate a decision, your wishes are known and can be followed. It helps the people involved in your care to understand your wishes if you can’t make decisions for yourself.
You can find out more on the My Decisions website.
Deputies: make decisions for someone who lacks capacity
You can apply to become someone’s deputy if they ‘lack mental capacity’. This means they cannot make a decision for themselves at the time it needs to be made. They may still be able to make decisions for themselves at certain times.
People may lack mental capacity because, for example:
- they’ve had a serious brain injury or illness
- they have dementia
- they have severe learning disabilities
As a deputy, you’ll be authorised by the Court of Protection to make decisions on their behalf.
There are two types of deputy.
- Property and financial affairs deputy - You’ll do things like pay the person’s bills or organise their pension.
- Personal welfare deputy - You’ll make decisions about medical treatment and how someone is looked after.
Find out more about becoming a deputy at www.gov.uk .
Become an appointee for someone claiming benefits
You can apply for the right to deal with the benefits of someone who cannot manage their own affairs because they lack the capacity to do so or are severely disabled.
To find out more visit the Department for Work and Pensions Website.
Wills and inheritance tax
Your will lets you decide what happens to your money, property and possessions after your death. If you make a will you can also make sure you don’t pay more Inheritance Tax than you need to.
You can write your will yourself, but you should get advice if your will isn’t straightforward. You need to get your will formally witnessed and signed to make it legally valid.
If you want to update your will, you need to make an official alteration (called a ‘codicil’) or make a new will.
If you die without a will, the law says who gets what.
The Government website 'making a will' is a good source of infomation.
Ensuring people know about your wishes
Steps you should consider:
If you make an Advance Statement, Advance Decision or Lasting Power of Attorney, it is important that the people involved in your care know about it. There are things that you can do to make people aware of your wishes:
- Ask your GP to keep photocopies with your medical records.
- Give photocopies to anyone who is regularly involved in your care. This could be a consultant, social worker, your local hospital, and local ambulance service.
- Give photocopies to people you know and trust. It is important that anyone who might be contacted if you are admitted to hospital knows how your wishes are recorded.
- Keep a copy with you, preferably the original so that you can review it regularly.
- If you make an Advance Decision, you can contact Compassion in Dying to request a Notice of Advance Decision card to keep in your bag or wallet.
- If you make an LPA, the Office of the Public Guardian has a register of all LPAs. However, searching the register can take a long time, so it is important to show anyone involved in your care your registered LPA form.
- MedicAlert provides jewellery for people who need to convey important information in an emergency. There is an annual fee and an additional charge for jewellery. For more information visit: www.medicalert.org.uk
- Order a free ‘bottle’ from Lions Club International to keep a copy of your Advance Statement or Advance Decision in the fridge. Paramedics should know to look for the Lions symbol when entering someone’s house. To order call 0845 833 9502.