Using and disclosing patient information for direct care
Disclosures about patients who lack capacity to consent
You must work on the presumption that every adult patient has the capacity to make decisions about the disclosure of their personal information. You must not assume a patient lacks capacity to make a decision solely because of their age, disability, appearance, behaviour, medical condition (including mental illness), beliefs, apparent inability to communicate, or because they make a decision you disagree with.
You must assess a patient’s capacity to make a particular decision at the time it needs to be made, recognising that fluctuations in a patient’s condition may affect their ability to understand, retain or weigh up information, or communicate their wishes.
We give detailed advice on assessing a patient’s mental capacity in our guidance Decision making and consent. Practical guidance is also given in the Adults with Incapacity (Scotland) Act 2000 and Mental Capacity Act 2005 codes of practice.14
The main provisions of the Mental Capacity Act (Northern Ireland) 2016 have not yet come into force. The common law duty to act in the best interests of a patient who lacks capacity to consent therefore continues until the Act is commenced.
Considering the disclosure
You may disclose personal information if it is of overall benefit to patient who lacks the capacity to consent. When making the decision about whether to disclose information about a patient who lacks capacity to consent, you must:
- make the care of the patient your first concern
- respect the patient’s dignity and privacy
- support and encourage the patient to be involved, as far as they want and are able, in decisions about disclosure of their personal information.
You must also consider:
- whether the patient’s lack of capacity is permanent or temporary and, if temporary, whether the decision to disclose could reasonably wait until they regain capacity
- any evidence of the patient’s previously expressed preferences
- the views of anyone the patient asks you to consult, or who has legal authority to make a decision on their behalf, or has been appointed to represent them
- the views of people close to the patient on the patient’s preferences, feelings, beliefs and values, and whether they consider the proposed disclosure to be of overall benefit to the patient
- what you and the rest of the healthcare team know about the patient’s wishes, feelings, beliefs and values.
You might need to share personal information with a patient’s relatives, friends or carers to enable you to assess the overall benefit to the patient. But that does not mean they have a general right of access to the patient’s records or to be given irrelevant information about, for example, the patient’s past healthcare.
You must share relevant information with anyone who is authorised to make health and welfare decisions on behalf of, or who is appointed to support and represent, a patient who lacks capacity to give consent. This might be a welfare attorney, a court-appointed deputy or guardian, or an independent mental capacity advocate. You should also share information with independent mental health advocates in some circumstances.15
Independent mental health advocates should also be given the information listed in section 130B of the Mental Health Act 1983. Guidance on the roles of independent mental health advocates is given in the Mental Health Act 1983 Code of Practice 2015.
If a patient who lacks capacity asks you not to disclose
If a patient asks you not to disclose personal information about their condition or treatment, and you believe they lack capacity to make that decision, you should try to persuade them to allow an appropriate person to be given relevant information about their care. In some cases, disclosing information will be required or necessary, for example under the provisions of mental health and mental capacity laws (see paragraph 47).
If the patient still does not want you to disclose information, but you consider that it would be of overall benefit to the patient and you believe they lack capacity to make that decision, you may disclose relevant information to an appropriate person or authority. In such cases, you should tell the patient before disclosing the information and, if appropriate, seek and carefully consider the views of an advocate or carer. You must document in the patient’s records your discussions and the reasons for deciding to disclose the information.