Mental capacity in palliative care
Please be aware - this information is for healthcare professionals.
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Why might someone not have mental capacity?
There are many different reasons why someone with a terminal illness might lack mental capacity. Conditions that can affect mental capacity include:
- dementia
- delirium
- primary cancer or secondary cancer (metastases) affecting the brain
- severe learning disability
- brain injury
- mental health illness
- stroke
- acute severe illness, for example sepsis
- unconsciousness due to injury or medication.
Just because someone has one of these conditions, it doesn’t mean that they lack mental capacity.
What are the laws around mental capacity?
There are different laws across the UK to protect vulnerable people who lack capacity. They are:
- Northern Ireland – Mental Capacity Act (Northern Ireland) 2016 (not fully implemented)
- Scotland – Adults with incapacity: code of practice for medical practitioners
- England and Wales – Mental Capacity Act 2005
The purpose of these laws is to empower people to make decisions for themselves wherever possible and if they can’t, to make sure that any decisions made for them are in their best interests.
The laws cover big and small decisions, such as whether to have medical treatment or move into a care home, as well as what to wear or what to eat.
Someone might have the capacity to make decisions about some things but not others. For example, they might be able to decide what to wear but aren’t able to decide how to manage their finances. Their mental capacity can change over time.
When is mental capacity assessed?
Every professional caring for someone is responsible for assessing capacity on an ongoing basis. For example, if you’re taking a blood test or changing a dressing, it’s your responsibility to check that they have capacity to consent to the procedure.
The principles and assessment process of mental capacity laws are slightly different in the different countries of the UK – these are outlined below.
Mental capacity in England and Wales
The Mental Capacity Act 2005 is the law that applies to people in England and Wales aged 16 and over. The act has five key principles.
Principle 1: Presumption of capacity
Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise.
Principle 2: Individuals supported to make their own decisions.
A person must be given all practicable help before anyone treats them as not being able to make their own decisions.
Principle 3: Unwise decisions.
People have the right to make decisions that others might regard as unwise or eccentric.
Principle 4: Best interests.
Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests.
Principle 5: Least restrictive options.
Someone making a decision on behalf of a person who lacks capacity must choose the option that affects the person’s rights and freedoms the least.
How is mental capacity assessed in England and Wales?
If you suspect someone lacks capacity, you must do an assessment and document the results. If the person finds it difficult to communicate, you should make every effort to support them to share their wishes.
The assessment involves answering the following questions:
- Is there a disturbance of or an impairment in the functioning of the mind or brain? If so,
- Does that impairment or disturbance make the person unable to make a particular decision?
If the answer to both is yes, the assessment can proceed to stage two:
- Does the person understand the information given?
- Do they retain it long enough to make a decision?
- Do they weigh up the information available to make a decision?
- Does the person then communicate that decision?
If someone is unable to communicate, you should make every effort to support them to share their wishes. Read more about how to support people with communication difficulties.
If the person cannot do any or one or more of these, they are incapable of making that particular decision. This does not mean that they cannot make any decisions at all, and it does not mean that they may not be able to make such a decision in the future.
Mental capacity in Scotland
The Adults with Incapacity (Scotland) Act 2000 is a system for safeguarding people over 16 in Scotland who lack capacity. The act has five key principles.
Principle: 1 Benefit
Any action or decision taken must benefit the person and only be taken when that benefit cannot reasonably be achieved without it.
Principle 2: Least restrictive option
Any action or decision taken should be the minimum necessary to achieve the purpose. It should be the option that restricts the person's freedom as little as possible.
Principle 3: Take account of the wishes of the person
If someone is making a decision on behalf of a person who lacks capacity, they should take their interests into account as much as possible. The person may be able to communicate their wishes clearly. If someone is unable to communicate, you should make every effort to support them to communicate their wishes. Read more about how to support people with communication difficulties.
Principle 4: Consultation with relevant others
Take account of the views of others with an interest in the person's welfare. This includes the person's primary carer, nearest relative, named person, attorney or guardian (if there is one).
Principle 5: Encourage the person to use existing skills and develop new skills
If someone lacks capacity to make a decision now, it does not mean that they won’t be able to make that decision for themselves in the future. They should be supported to develop their skills.
How is mental capacity assessed in Scotland?
Mental capacity is assessed on a decision-specific basis. This means someone’s capacity to make a decision should be assessed for each decision. Don’t assume that someone lacks capacity because they have a particular condition such as dementia or a learning disability.
If someone has capacity, they should be able to:
- Understand in simple language what the treatment or care is, its purpose and nature and why it is being proposed;
- Understand its principle benefits, risks and alternatives;
- Understand in broad terms what the consequences would be of not receiving the proposed treatment; and
- Retain the information long enough to use it and make a decision.
Mental capacity in Northern Ireland
The Mental Capacity Act (Northern Ireland) 2016 has not yet been fully implemented. You can find out more information on the Department of Health website .
What happens if someone lacks capacity?
If someone lacks capacity to make a decision about their care, someone else will make the decision on their behalf. Decisions should be guided by any advance care plans that someone has made. This includes an advance statement or an advance decision to refuse treatment (called advance directive in Scotland).
Best interest decisions
The healthcare team will usually make the decision with information from those close to the person.
All decisions made in someone’s best interests should be the least restrictive of the options available. The decision should benefit the person and cause as little harm as possible.
If someone has a Power of Attorney
If the person has already set up a Lasting Power of Attorney for health and care decisions (England and Wales), or Power of Attorney (Scotland), the Power of Attorney will be able to make decisions on their behalf.
If someone doesn’t have a Power of Attorney
In Scotland, someone can be appointed as a Welfare Guardian for someone after they have lost capacity. A Welfare Guardian can make decisions like a Power of Attorney, but they are appointed by a court instead of being chosen by the person themselves. In England and Wales, a ‘deputy’ may be appointed after someone has lost capacity. They can be a friend, family member, or even the person’s local authority if they have no close friends or family. In Northern Ireland, this is called a ‘controller’.
If someone in England, Wales or Northern Ireland lacks capacity and doesn’t have any close family or friends, an Independent Mental Capacity Advisor (IMCA) can be appointed. The IMCA’s role is to gather information about the person and what their wishes would be, represent their wishes in decision-making and challenge decisions if they might not be in the person’s best interests.
How can I support family and friends?
It can be challenging to talk to family and friends about capacity and making decisions on someone’s behalf. You might find it useful to share our resources for the public:
- website page on mental capacity
- free booklet, Planning ahead.
We also have more information for professionals on talking with family and friends.
When should I ask for help?
If you are concerned that someone doesn’t have capacity to make decisions, speak to your manager or the person’s GP or specialist nurse.
Useful resources
Northern Ireland: Mental Capacity Act (Northern Ireland) 2016
Scotland: Adults with incapacity: code of practice for medical practitioners
England and Wales: Mental Capacity Act 2005
Key points
- If someone has mental capacity, it means they are able to make decisions for themselves.
- If someone lacks mental capacity, it means they are unable to make all or some decisions for themselves.
- There are many different reasons why someone with a terminal illness might lack capacity.
- There are laws to protect vulnerable people who lack capacity in the UK.
- Everyone should be assumed to have capacity unless it's proved that they don't through an assessment.
- If someone lacks capacity, a legally appointed person can make decisions on their behalf in certain situations.
- If the person's healthcare team makes a decision on their behalf, it should always be in the person's best interests.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
