Healthcare - Consenting to treatment

How should decisions about healthcare be made when an individual is unable to consent?

What can you do if health professionals say they cannot carry out tests or procedures because your relative will not cooperate and as an adult “it is his/her choice”?

If your relative is over the age of 16 years, a doctor will seek the individual’s consent to treatment first before beginning medical tests. Without proper consent given, the doctor’s actions could be illegal. If your relative has a learning disability the doctor should consider if they have the ability to make that particular decision (known as mental capacity) whether to refuse or accept the medical test. The doctor will have to consider if your relative can understand what might happen if they refuse to have the medical test. In order to know if your relative has capacity, the GP or other medical professionals must carry out a capacity assessment. For your relative to be judged as having capacity they must do all of the four things below:

• Understand the information given to them to make a decision e.g. what the test is, why they need it, what it will involve, what are the benefits or its risks etc.
• Remember that information long enough to be able to make a decision.
• Use or weigh up the information given to them to make a decision.
• Communicate their decision. This could be using words, photos or sign language – whichever way they usually communicate.

If your relative does have capacity to make a particular decision that means they can choose whether to have or not to have any medical tests or procedures. If your relative is over 16 years with capacity to make a particular decision and can understand the risks and benefits but chooses to refuse medical tests, the professionals or you will have to respect their decision and not force them to change their mind.

If your relative does have capacity but requires extra support to make this particular decision, they should be given all appropriate support to make this decision. This also applies if your relative’s capacity to make decisions changes over time because of illness, disability or anxiety etc. There are things the GP or health professionals can do to support your relative to make the decision for themselves; this includes communicating using a method they understand, giving them more time to process the questions, seeing them in familiar surroundings such as their home and seeing them at a time they are likely to be responsive.

If your relative does not have capacity to make the decision for themselves, then others will have to act in their best interests. This means that the doctor or other medical professionals will have to decide whether having the test/procedure is in their best interests. This involves looking at what would happen if they did not have the test/procedure, their wishes, and whether there is an alternative. It is a legal requirement for professionals to consult family carers where their relative lacks the capacity to make a decision. This means that doctors (or other medical professionals) have to ask for your views (and that of others involved in your relative’s life including siblings) about what you think is in your relative’s best interests and take this into consideration when making a best interests decision. Doctors and other professionals may not consult you if it is an emergency situation.

Decision makers do not have to follow your views if they believe they are not in the best interests of your relative. In the case where you are not in agreement with professionals you can apply to the Court of Protection for a Judge to make a decision on whether the treatment should be given or withheld. If you want to make sure that your views are listened to by professionals you can apply for a Deputyship to the Court of Protection. The Deputyship for Health and Welfare may allow you to make decisions about health and welfare including medical treatments on behalf of your relative if it is included in the Deputyship order.

If your relative is under the age of 16 years and you have parental responsibility you should be involved in the decision making process about your child’s healthcare whether they have capacity or not. There are exceptions to this, read more on the NHS Choices, available here.

Where to find out more

• For a family guide on ‘Using the Mental Capacity Act’ see Hft’s guide here and their videos on YouTube here
• Mental Capacity Act resource pack produced by Mencap available here
• If you are worried that you are not being involved in best interests decisions see our ‘Making decisions’ information here and for template letters to challenge decisions click here
• For more information about applying for a Deputyship see our ‘Getting legal deputyship’ information sheet here.
• A guide for parents of children under 16 on ‘Decision-Making, Confidentiality and Sharing Information’ produced by Cerebra available at Decision Making, Confidentiality and Sharing Information – Cerebra

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