If you're living with a terminal illness, there may come a time when you're no longer able to make decisions for yourself because of your condition or symptoms. This is known as losing mental capacity. On this page, we have information about what you can do to prepare for the future, and what your rights are if you do lose the ability to make decisions.
This information applies for people aged 16 or over.
What does mental capacity mean?
Your ability to make decisions is called your mental capacity. If you cannot make a decision at the particular time when it needs to be made, this is known as lacking mental capacity.
In Scotland, if you lack mental capacity, you're known as an adult with incapacity.
Why is mental capacity important?
Throughout your illness, you'll have to make lots of decisions. These could be big things about your illness, like whether you:
- want a certain kind of treatment
- would want surgery, if you needed it
- want to move in with someone else or move to a care home.
They could also be more day-to-day things, like:
- what you spend your money on
- looking after your pets
- what you buy in your weekly shop.
You might lose the ability to make these decisions. This could be due to:
- dementia
- a condition that affects your memory or thinking
- a learning disability
- a mental health illness
- cancer affecting the brain
- delirium or confusion
- brain injury
- stroke
- acute severe illness, for example sepsis
- being unconscious due to injury, illness or medication
- being intoxicated from drugs or alcohol
- being unconscious or drowsy because you're in the last days and hours of life.
These conditions might impact your mental capacity. But just because you have one of these does not necessarily mean you're unable to make decisions.
If your capacity is affected, you might be able to make some decisions, but not others. For example, you might be able to decide what to wear every day, but you might not be able to make decisions about how to spend your money.
You may lose mental capacity in the short term. For example, due to pain, infection, conditions such as delirium, or substances such as alcohol. This may change after treatment.
Scenarios to help you understand mental capacity
Understanding mental capacity and how it applies to your situation can be confusing. Reading some scenarios or case studies might help. These resources show how mental capacity can be assessed, and how decisions might be made.
Mental capacity assessments
If someone is trying find out if you're able to make a decision, they will think about two questions.
- Do you have a condition that affects your mind or brain?
- Does this condition mean you're unable to make a specific decision when you need to?
You're considered unable to make a decision if you cannot do one or more of these things:
- understand information about the decision
- remember that information long enough to make a decision
- use that information to make a decision
- communicate your decision.
This process is known as assessing your mental capacity.
Who assesses your mental capacity?
The people who might assess your mental capacity include:
- health and social care professionals
- paid carers
- the people looking after you (for example, a friend or family member).
In Scotland and Northern Ireland, usually only a suitably trained professional will assess your mental capacity.
For most day-to-day decisions, like deciding what you should wear or eat, the people looking after you do not need to follow a formal process to assess your ability to make a decision. But if they were asked, they should be able to explain how they reached their decision.
For more complex decisions, like deciding whether to have surgery, a suitable professional should carry out the assessment and write down how they assessed you in a report. This could be a doctor, psychologist, or social worker. The professional should communicate any decisions about mental capacity to the people close to the person they've assessed.
The Mental Capacity Act – knowing your rights
If someone is deciding whether you're able to make decisions, there are certain laws in place to make sure they do it properly. These laws are there to protect you:
-** The Mental Capacity Act 2005** – The law in England and Wales.
- The Adults with Incapacity Act 2000 – The law in Scotland.
- The Mental Capacity Act 2016 – The law in Northern Ireland. Not all the guidelines for following this law have been made yet. The law is being put into effect gradually, with new regulations being introduced over time. Guidance on how to follow the law will be provided once these regulations are set by the Department of Health.
If you're worried about what will happen if you lose your ability to make decisions, be aware that there are legal rules to protect you. These say:
- people should assume you're able to make a decision, unless it's been shown you cannot
- people should support you to make your own decisions where possible
- people should not assume you're unable to make a decision just because they think the decision is unwise
- if someone makes a decision for you, they should consider what's in your best interests
- if someone makes a decision for you, they should consider what will be the least restrictive option for you.
Making plans in case you cannot make decisions in the future
You can put plans in place in case you lose the ability to make decisions in future. Speak to your doctor or nurse if you want to do some of the things below – there are certain processes you have to follow.
Let someone else make decisions about your health and welfare
You can choose someone to make decisions about your health and welfare on your behalf. This could be a friend, family member, or a professional like a solicitor. This is called:
- a lasting Power of Attorney for health and welfare in England and Wales
- a welfare Power of Attorney in Scotland.
In Northern Ireland, there is no equivalent to a Power of Attorney for health and welfare. Decisions around someone's health and welfare will be made by the next of kin.
Let someone else make decisions about your money and property
You can choose someone to make decisions about your money or property on your behalf. You can do this by making:
- a lasting Power of Attorney for property and financial affairs in England and Wales
- an enduring Power of Attorney in Northern Ireland
- a continuing Power of Attorney in Scotland.
Make a plan for what you want to happen in the future
You can make an advance care plan. This tells people how you want to be cared for in the future. You should discuss what's in your plan with the people important to you, as well as your doctor and nurse.
Write down which treatments you do not want
If you live in England and Wales, you can make an advance decision to refuse treatment (ADRT). This allows you to refuse a specific type of medical treatment. It's sometimes called an advance decision or living will. If it's written down and signed in a specific way, it's legally binding. You might wish to seek advice from a legal professional, like a solicitor, to make sure this document is legally binding.
If you live in Scotland, you can make an advance directive. This is similar to an advance decision to refuse treatment, but it's not a legal equivalent. It should be considered by the health and social care professionals supporting you, but it's not protected by law.
You can also ask to not be resuscitated if your heart stops. You can write down this decision in a 'do not attempt cardio-pulmonary resuscitation (DNACPR)' form. Healthcare professionals might discuss this with you and the people close to you, too.
Making decisions for someone else
You might have to make decisions for someone else, if they lose mental capacity. For example, if you're a carer, a friend, or family member of someone with a terminal illness.
This section includes information on who can make decisions on someone's behalf and how you can support them.
Supporting someone to make decisions themselves
If someone is still able to make a decision, it's important to support them to make the decision for themselves. You should:
- provide all the relevant information they need
- avoid overwhelming them with information
- explain the information in a way that's easy for them to understand, for example by using simple language or visual examples
- explore different methods of communication, such as using picture, symbols and easy read resources
- ask someone else to help you communicate with each other
- check if there are times of day or places where they might be able to better make decisions
- do all you can to help the person communicate their decision.
Try to be patient. The person may need more than one conversation to make a decision.
Who can make a decision on their behalf
If the person cannot make a decision because they lack mental capacity, someone else might have to make the decision for them. This decision must always be in the person's best interests.
People who could make a decision on the person's behalf include:
- health and social care professionals
- someone legally appointed to make decisions about treatment, care and where they live, like a Power of Attorney for health and welfare
- someone legally appointed to make decisions about money and property, like a Power of Attorney for property and financial affairs
- a friend, family member or carer can make decisions for someone else about day-to-day things like what to wear.
If you're making a decision for another person, you must:
- think about what the person would want
- think about what's best for them
- take into account anything they've previously said that they want
- take into account any beliefs or values they have
- ask other people close to the person what they think.
People can be legally appointed to make decisions on someone else's behalf. Find out more about how to do this.
What happens if someone loses mental capacity suddenly?
If someone loses mental capacity suddenly, someone else may need to make decisions on their behalf (see Who can make a decision on their behalf above).
You may be worried if someone does not have a Power of Attorney set up or plans in place. But decisions should still always be made in the person's best interests.
For decisions about a person's health and welfare, healthcare professionals might make decisions on the person's behalf. Professionals should always consider the person's values, beliefs and wishes before making a decision. This is a key element of the Mental Capacity Act and the Adults with Incapacity Act.
Healthcare professionals might also speak to people close to the person, such as their carers, close family members and friends to help understand their wishes.
If you are not a Power of Attorney for the person, you can still apply to make decisions on their behalf after they lose capacity. This is called becoming a deputy, guardian or controller. See the link blocks above for information about how to apply in your part of the UK.
If you are a Power of Attorney for the person, you should be involved in decisions straight away.
If you're worried about someone losing mental capacity, you could talk to them about planning ahead. This might involve writing their wishes down in, or by appointing someone to make decisions on their behalf.
Who can help?
Carers UK has more information about mental capacity from a carer’s perspective. They explain what mental capacity means depending on where you live in the UK.