Mental capacity in palliative care

If someone has mental capacity, it means they can make their own decisions and understand the results of those decisions. This means they can understand the information needed to make a decision, remember that information, use it to make a decision, and communicate their decision. If someone cannot do these things, they are said to 'lack capacity.' This means they cannot make all or some decisions for themselves.

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There are many different reasons why someone with a terminal illness might lack mental capacity. Conditions that can affect mental capacity include:

Just because someone has one of these conditions, it does not mean that they lack mental capacity.

A person's mental capacity can change over time. For example, due to infection, delirium, substance use such as alcohol, or their condition getting worse. This may change after treatment.

There are different laws across the UK to protect vulnerable people who lack capacity:

The purpose of these laws is to empower people to make decisions for themselves wherever possible. If they cannot make decisions for themselves, these laws make sure that any decisions made for them are in their best interests.

The laws cover big and small decisions. For example, 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 are not able to decide how to manage their finances. Their mental capacity can change over time.

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.

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.

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.

A person must be given all practicable help before anyone treats them as not being able to make their own decisions.

People have the right to make decisions that others might regard as unwise or eccentric.

Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests.

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.

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. Do not assume that someone lacks capacity because they have a particular condition, such as dementia or a learning disability.

Assessing mental capacity is decision specific. This means that a person's capacity for each decision should be assessed individually. Mental capacity is not a fixed state and can differ depending on the situation and the type of decision that needs to be made.

The assessment involves answering the following questions:

If the answer to both is yes, the assessment can proceed to stage two:

If someone is unable to communicate, you should make every effort to support them to share their wishes.

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.

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.

Any action or decision taken must benefit the person and only be taken when that benefit cannot reasonably be achieved without it.

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.

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.

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).

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.

Mental capacity is assessed on a decision-specific basis. This means someone’s capacity to make a decision should be assessed for each decision. Do not 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:

The Mental Capacity Act (Northern Ireland) 2016 has been passed. But, only some of the codes of practice that support the act have been established.

If someone lacks capacity to make a decision about their care, someone else could make the decision on their behalf, if they have the legal powers to do so.

All decisions should consider the person's wishes and 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).

The healthcare team will usually make the decision with information from the person's nominated person (such as a Power of Attorney) or 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 the person has already set up a Power of Attorney for health and care decisions, this person or people will be able to make decisions on their behalf.

If the person lives in England or Wales, this type of Power of Attorney is called a lasting Power of Attorney for health and welfare decisions. If the person lives in Scotland, it's called a welfare Power of Attorney. There is no equivalent to a health and welfare Power of Attorney in Northern Ireland.

If the person does not have a Power of Attorney, people close to the can apply to make decisions on their behalf. This often takes time and money to set up.

The process for this depends on where the person lives. In England and Wales, someone can apply to be the person's deputy to make decisions on their behalf if they've lost capacity. In Scotland, someone close to the person can be appointed as a welfare guardian. In Northern Ireland, this role is called a controller.

If someone in England, Wales or Northern Ireland lacks capacity and does not 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.

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.

If you are concerned that someone cannot make decisions, speak to:

If you are one of these people, or if talking to them has not helped, read the guidance (linked above) or ask colleagues who have experience with this.