Into practice: Consent and capacity
From the Communitybaptistpa's guidance
'You should check whether the patient needs any additional support to understand information, to communicate their wishes, or to make a decision.' (Consent, paragraph 21)
Doctors must make sure they have a patient's consent, or other valid authority, before examining or treating them. This page aims to help you make decisions with patients who have learning disabilities that are in line with good practice and the law.
Learning points (from the Interactive learning section)
- A physical examination must be carried out if indicated – don’t avoid it because of difficulties in communication or assessing capacity. Instead try to gain the patient’s trust and persuade them to consent to an examination.
- Capacity is decision-specific and time-specific.
- You must make every attempt to maximise patients’ capacity to make a decision, including providing information in a way the patient can understand.
- You must work on the presumption that every adult patient has the capacity to make decisions about their care.
- Lack of cooperation should not be interpreted as valid refusal of consent, without first assessing capacity.
- Doctors should explain in a way that the patient can understand, the implications of a refusal to cooperate.
You can see these points brought to life in the Interactive learning section.
Experts’ tips about assessing capacity
Our experts highlight important things to bear in mind when assessing patients' capacity to consent to investigation and treatment.
Presumption of capacity
You must work on the presumption that every adult patient has the capacity to make decisions about their care, and to decide whether to agree to, or refuse, an examination, investigation or treatment. You must only regard a patient as lacking capacity once it is clear that, having been given all appropriate help and support, they cannot understand, retain, use or weigh up the information needed to make that decision, or communicate their wishes.
Case study: Mencap praised a decision by a High Court judge to give doctors permission to use force if necessary to operate on a woman with a learning disability who lacked the capacity to make decisions about her care.
But don’t accept ‘refusal’ without checking understanding
Having said that, it is also important that a patient's unwillingness to be examined or initial objection to a treatment option is not automatically understood to be a valid refusal of consent. In these circumstances, the patient must be given all the information needed to make the decision, and appropriate help and support. It may be that (like Marie in Wood for the trees) the patient does not understand the consequences of refusing treatment and so is not able to weigh up the information needed to make the decision.
If a patient with a learning disability is unwilling to co-operate with a treatment or investigation that you feel to be in their best interests, explore further with them the reasons why this might be.
- Have you explained why you feel the treatment or investigation would be the best option for them?
- Can you reassure them about discomfort/pain/side effects?
- Does the patient have a fear or phobia of something connected that could be dealt with separately or even sidestepped?
- And, critically, do they understand the implications of refusal?
Assumptions about capacity
Professor Baroness Sheila Hollins describes how a patient changed her mind after initially refusing consent to treatment, when the consequences of her refusal were explained to her.
From the Communitybaptistpa's guidance
'A patient has capacity if they can understand, retain, use and weigh up the information needed to make a decision, and can communicate their wishes.' (Consent, endnote 5)
Maximising a patient's ability to make decisions
Before deciding that a patient does not have capacity to make a decision, you must make sure you have made every effort to maximise their decision-making ability. For example, our Consent guidance (paragraph 68) suggests that you should:
- discuss treatment options in a place and at a time when the patient is best able to understand and retain the information
- ask the patient if there is anything that would help them remember information, or make it easier to make a decision; such as bringing a relative, partner, friend, carer or advocate to consultations, or having written or audio information about their condition or the proposed investigation or treatment
- speak to those close to the patient and to other healthcare staff about the best ways of communicating with the patient, taking account of confidentiality issues.
For communication tips and tools you can use with your patients with learning disabilities that could help to maximise their capacity to consent, see Into practice: Communication with patients.
Ongoing review of decisions
As explained in The issues section, capacity is time-specific and decision-specific. This means that it must be assessed on an ongoing basis. Because somebody is judged not to have capacity to make a particular decision at a particular time, this does not necessarily mean that they will never be able to make that - or any other - decision.
As with any patient receiving treatment, you must ensure that your patients with learning disabilities are kept informed about the progress of their treatment, and are able to make decisions at all stages, not just in the initial stage.
Professor Baroness Sheila Hollins describes how capacity is time- and decision-specific.