The law says if someone cannot make a decision for themselves the decision needs to be made by someone else. The person making the decision must act in the person’s best interests.
On this page
The law says if someone cannot make a decision for themselves (they’ve lost mental capacity), that decision needs to be made by someone else.
Mental capacity is the ability to make a decision for yourself.
While you have mental capacity you have the right to make decisions about your medical treatment and care. You can choose to refuse or consent to treatment. Your living will can only be used if you do not have mental capacity to make or communicate a decision for yourself.
The law in England and Wales says that someone’s mental capacity should be assumed, unless there is reason to question it. For example, if they have had a brain injury or a diagnosis of dementia.
You must be able to do all four of these things to have mental capacity to make a decision:
Understand the information
Retain the information long enough to make a decision
Weigh up the information against other factors
Communicate the decision once you have made it
Mental capacity is decision specific. This means that someone may have the mental capacity to make some decisions but not others. For example, someone with advanced dementia may have the mental capacity to decide what they want to eat that day, but not to make a decision about refusing CPR.
In Scotland and Northern Ireland the principle of mental capacity is similar, but they have their own definitions. The Office of the Public Guardian in Scotland has a helpful definition of incapacity on their website. The Department of Health NI define mental capacity in their Code of Practice (PDF, 2.8MB).
The law says that whoever is making the decision must act in the person’s best interests.
Best interests: what does it mean?
Making a decision in someone’s best interests means taking into account the clinical options available as well as the person’s past and present wishes, feelings, beliefs and values. It should reflect the decision the person would make for themselves if they could.
Relatives can often feel unprepared and surprised that professionals are suddenly making decisions on behalf of someone they have known and loved for a long time.
Who is the decision maker?
If you have been appointed as an attorney by someone, you are the decision maker and you must make decisions in their best interests.
If there is no LPA for health and welfare then the professional in charge of the person’s care is the decision maker.
For decisions about treatment and care professionals have a responsibility to talk to anyone involved in caring for the person. This may include carers, relatives or close friends.
Case study: Barbara had a stroke
Barbara is 82 and recently had a stroke. When her daughter Sue arrived at the hospital, she asked to speak to the doctor in charge to find out what was going on. Her mum had been given some initial treatments when she arrived, and there were some discussions about whether she should be fed artificially through a tube.
Sue was upset that the doctors seemed to have already decided to go ahead with the procedure. Sue was close to her mum and knew she wouldn’t want this – she always talked about wanting to die when her time came and not have her life artificially prolonged.
When she tried to explain this to the doctors and nurses she was shocked that she didn’t have the right to make a decision on behalf of her mum.
How doctors should make a best interests decision
When dealing with stressful medical situations, doctors are unlikely to explain how they make decisions but they should be following British Medical Association guidance.
There is separate professional guidance doctors should follow for decisions about whether to stop, start or continue clinically-assisted nutrition and hydration (CANH).
What is clinically-assisted nutrition and hydration (CANH)?
Clinically-assisted nutrition and hydration (CANH) is given when someone has a medical condition that means they are unable to swallow, and so cannot eat or drink. If it is not provided, a person will die. With it, some people could possibly go on living for a long time, in some cases, many years.
CANH involves giving a person a liquid that contains nutrition or hydration. This can be given through a tube through the nose, a tube directly into the stomach (PEG feed) or an intravenous drip (directly into a vein). It is different from helping people to eat or drink by mouth, for example spoon-feeding or helping someone hold a cup to their mouth.
Although some people do not see a difference between clinically-assisted nutrition and hydration and helping someone to eat or drink, the law is clear that CANH is a form of medical treatment which can only be provided if it is in a person’s best interests to receive it.
The process might be different based on whether someone is in hospital, a care home or another setting. It might also be different depending on how well trained and familiar the professionals are with the law.
A doctor following the guidance should:
try to find out the persons’ past and present wishes, feelings and values (these may have been spoken, written or expressed through behaviour or habits)
check if the person has made an advance statement, living will (advance decision) or lasting power of attorney
speak to relatives, friends or carers to get an understanding of what the person would want
not make assumptions on the basis of the persons’ age, gender, ethnic background, sexuality, behaviour or health
weigh up all the factors to work out what is in the persons’ best interests
If you need help with a best interests decision you can contact us by:
What to do if someone’s wishes are not being respected
There can often be disagreements about what is in someones’ best interests. Or that the best interests process is not always followed. We understand this can be a stressful time and feel very frustrating.
If you’re a relative not being included in decision making, or a LPA for health and welfare, below are some helpful things you can try if someones’ wishes are not being respected.
1Check if a mental capacity assessment has been doneShow
If a decision needs to be made about someone’s treatment and care, and professionals think the person does not have mental capacity to make this decision, then a formal mental capacity assessment should be done.
If you think your loved one lacks mental capacity to make a decision and professionals disagree, you can ask for a capacity assessment to be done.
You can ask the doctors:
Have you done a formal mental capacity assessment?
Has the decision been documented?
2Gather evidence of their wishes, feelings and valuesShow
Relatives and friends have an important role to play when it comes to making decisions. Even if professionals have legal decision making power, they should be consulting others when a decision needs to be made.
It is important that you gather evidence of someone’s wishes, feelings and values:
when a specific decision needs to be made
if the attorney or professionals are unsure about the right way forward
if there is a disagreement
so you’re better prepared to deal with different doctors and medical teams (as often medical records are not shared)
When you talk to doctors, you need to communicate what the person would want. Not what you would want if you were in their situation.
Things you can think about:
Did the person write their wishes down? These could be written in a living will (advance decision), advance statement or advance care plan.
Anything they wrote down or recorded which might indicate what they wanted (such as emails, text messages, letters or social media posts).
A written statement about how they lived their life, what they enjoyed, their habits and behaviour which may show what quality of life meant to them, and how this would affect any decisions made about their treatment or care.
Did the person have experience of a relative with a similar condition, and mention anything about what they would want for themselves in that situation?
Any relevant conversation you (or someone else) had. It would be helpful to write this down including what they said, the context of the conversation, where and when the conversation took place, and the contact details of who they spoke to.
What you know or witness about their current situation and what you think they might want given their likely future.
You and other relatives might have different ideas about the person’s personality and what they might have wanted. This is normal as everyone knows the person in a different way and will have had different conversations with them. Professionals should hear from all relatives and friends. It’s important to represent the person as best you can, it’s up to the decision-maker to decide what to do.
andAsk for a best interests meetingShow
Sometimes having a best interests meeting can be a helpful way to hear from everyone involved at the same time, to ask questions and raise any concerns or worries.
For example, a best interests meeting may be called to discuss whether to fit a feeding tube for someone after they’ve had a stroke.
Many people may need to be involved in a best interests meeting. This might include:
close relatives, friends or carers
consultants and nurses
speech and language therapists
dieticians
physiotherapists or occupational therapists
palliative care teams or other specialists
When you are invited the professional may not give the meeting a specific name, but it should be a chance for you and others to attend and discuss the decision that needs to be made.
You can also ask for a best interests meeting by speaking to the professional in charge of the person’s care.
What happens in a best interests meeting?
A best interests meeting is an opportunity to discuss the person’s treatment and care options, and their wishes, feelings and values that may affect the decision.
At the meeting everyone should be given the opportunity to say what they think is in the person’s best interests, and give evidence why.
At the end of the meeting a decision might be made. Sometimes that’s not possible, or more time is needed. In these cases there should be a plan for what happens next and who is responsible. If there continues to be disagreement about the decision, you may need to think about other options like:
asking for a second opinion
getting a third party to help (mediation)
asking the Court of Protection to decide
Prepare for a best interests meeting
People have told us that best interests meetings can be intimidating because there are often lots of professionals involved. These meetings can also be scheduled at short notice.
It can be a good idea to prepare in advance. When the meeting is being arranged you could ask the person organising if it’s possible to:
have an equal number of clinical and non-clinical people in the meeting (relatives are often outnumbered at these meetings)
audio-record the meeting (so that you can listen to it later if you want to remind yourself of what was discussed, or share it with someone who was not able to attend)
bring someone to support you in the meeting (it might be helpful to have someone else to take notes and keep track of everything that is said)
Once the meeting has been scheduled you should try and gather evidence of the person’s wishes, feelings and values. You should send this evidence to the meeting organiser in advance so they have time to read it.
If you would like help preparing questions for your meeting you can contact us by:
You have the right to ask for a second opinion. You can do this if you think your relative is receiving treatment that is against their wishes. Or if you think they would want to receive treatment and the doctor disagrees.
You can ask for a second opinion by asking the professional in charge to make a second opinion referral.
If you believe your loved one may be dying, it can be helpful to involve the palliative care team as soon as possible. Some doctors may say it’s too early for palliative care, but getting them involved earlier means you can start talking about end of life care options and symptom management sooner.
You can ask the doctor in charge for a palliative care referral at any time if you think your loved one is dying.
Palliative care teams can:
support you to understand the symptom management options available
be helpful in meetings with other professionals
We hear from relatives and attorneys that when palliative care teams are involved they feel more listened to.
4Get a third party to help resolve disagreements (mediation)Show
Sometimes relatives, attorneys or professionals may disagree about what should happen. It could be that:
communication has become difficult or broken down between you and the healthcare professionals
your loved one is not getting the treatment and care they would want
When communication has broken down, or there is no clear way forwards it can be hard to know how to proceed. In these situations it may be an option to involve a third party to try and resolve the dispute. This is known as mediation.
What is mediation?
Mediation is a confidential, voluntary process which gives those involved in a disagreement a chance to talk things through with the support of a trained and independent mediator.
The mediator will not take sides or make decisions. Their role is to make sure everyone has a chance to express their views properly.
Mediation is a flexible process which can differ depending on the situation. But it normally includes individual conversations with everyone involved, then a joint meeting together.
How to start mediation
If you are a relative or attorney you will need to ask the lead consultant, clinical director or relevant professional in charge if they are open to mediation.
Mediation is a paid for service and everyone involved must agree to take part. If the professionals agree to take part it is likely the NHS or local authority will pay for the mediation.
The Medical Mediation Foundation offers a free introductory 30 minute phone call which you can use to see if mediation might help in your situation.
5Ask the Court of Protection to decideShow
The serious medical treatment guidance says that if people cannot agree about a decision to provide life-sustaining treatment for someone, the Court of Protection should be asked to decide.
If everyone agrees what is in someone’s best interests, there is no need to go to court. But sometimes relatives or attorneys may disagree with each other or with professionals.
In other situations relatives, attorneys and professionals might all agree, but the person who lacks capacity shows signs that they disagree. For example, an older person with advanced dementia who does not want to move into a care home, even though everyone thinks this would be the best way to keep them safe.
The Court of Protection
The Court of Protection is a court in England and Wales that can make decisions on behalf of people who cannot make a decision for themselves.
The court can:
decide if someone has mental capacity to make their own decision
make a decision on behalf of someone who lacks capacity
Going to court can be a daunting prospect, but it can be a good opportunity to explain what you think your relative would have wanted. The judge will gather all the evidence they need by speaking to the people involved, and sometimes they will get independent experts to give extra advice.
People have told us the idea of going to court can be stressful, complicated and expensive so it can be helpful to find out a bit more about the process. Some people have found it reassuring to see how hearings work in the Court of Protection.
“… it was very useful for me as a litigant in person in my mother’s case, to see how a hearing proceeds and the efforts of the judge to be fair and even-handed with someone presenting their own case for a family member.” (Anna, daughter of a P in a s.21A case)
If you have an upcoming hearing in the Court of Protection you can read about other peoples’ experience or even observe a real hearing to see what happens on the Open Justice Project website.
Applying to the Court of Protection
Cases can be brought to the court by relatives or attorneys, but normally it’s the NHS or local authority who will bring the case to court.
If you cannot resolve a disagreement with professionals, you can ask the lead consultant or clinical director in charge of your loved one’s care if they believe the decision should be made by the court.
It can be a complicated process, so it’s important to get legal advice.
If you cannot afford to pay for legal advice the charity Advocate may be able to find a specialist barrister to help for free. You can find out more and apply for help on their website.
If you are able to pay you can contact a solicitor directly. The solicitors below have experience with the Court of Protection: