Confidentiality - Disclosures relating to patients unable to consent
Correct as of April 2011
You owe a duty of confidentiality to all your patients, past or present, even if they are adults who lack capacity. You may be asked to provide information from the medical records of patients who are incapable of giving consent, are aged under 16, or have died. This factsheet gives you further information about dealing with these circumstances.
Children and young people with capacity
You should give careful consideration to the child’s reasons for refusal of disclosure, and explain to them your reasons for disclosing the information and what you intend to disclose
Many young people have the capacity to consent to the disclosure of their medical records. If the child or young person (under 16 years of age) is able to understand the purposes and consequences of disclosure, they can consent or refuse consent to the disclosure. You should discuss disclosing the information with them and release it only with the child or young person’s consent.
If a child or young person under 16 refuses consent, you should nevertheless disclose the information if this is necessary to protect the child, young person or someone else from serious harm.
Examples include situations where you consider that the child or young person is at risk of neglect or abuse, the information would assist in the prevention, detection or prosecution of a serious crime, or where the child or young person may be involved in behaviour that might put themselves or others at risk of serious harm. It would also include a situation where a child or young person has refused to allow a carer to be told of a condition or treatment, from which there is a risk of a serious complication arising.
You should give careful consideration to the child’s reasons for refusal of disclosure, and explain to them your reasons for disclosing the information and what you intend to disclose – unless doing so would undermine the purpose of the disclosure. You should involve the child or young person in the decision and ensure this is documented – including notes on how the decision was reached.
Children, young people and adults without capacity
Notes should be made in the patient’s records of the steps taken to obtain consent, and the reasons behind the decision to disclose the information
Immaturity, illness or mental incapacity in a patient poses its own problems, if it stops the patient giving valid consent to disclosure. If such a patient expresses a wish not to have their details disclosed to a third party, then you should attempt to convince them to involve an appropriate person in the consultation.
If the patient continues to refuse consent, and you feel it is in their best interests to disclose the relevant information, then you must seek the consent of the person legally designated to give such consent. The patient must also be kept fully informed of this.
If no-one has been legally designated to grant consent, then the National Health Act decrees that the following persons can do so instead, in order of precedence: a spouse or partner, parent, grandparent, adult child or adult brother or sister. Where none of the above-mentioned persons exist or are available, then you may approach the High Court in terms of s129(9) of the Children’s Act 38 (2005) for relief.
Notes should be made in the patient’s records of the steps taken to obtain consent, and the reasons behind the decision to disclose the information.
If you suspect a child, or other person lacking the capacity to consent, to be the victim of neglect, or physical, sexual or emotional abuse, and they are not in a position to withhold or give consent to disclosure, then the appropriate statutory body or responsible person must be informed. The patient should also be notified about the intended disclosure; where appropriate, so should those with parental responsibility. However, if you feel that notifying a parent or guardian would not be in the best interests of the child or neglected patient, then you should refrain from doing so – but you must be able to justify your actions.
Disclosure after a patient’s death
Your duty of confidentiality extends beyond the patient’s death. However, there may be circumstances when disclosure may be justified. For example, you are under a professional duty to respond to complaints, and this includes complaints made by bereaved relatives. Any disclosure must be justifiable and the reasons for doing so must be fully documented.
To whom can you disclose information?
There are various circumstances in which you may be required to disclose information about patients who have died. These are:
- In connection with an inquest. The relevant information should be provided.
- As part of a clinical audit, or education or research that has been approved by a research ethics committee. Anonymised case studies would be most appropriate in this situation.
- On death certificates. It is the law to complete these honestly and fully.
- In relation to public health surveillance that has been approved by a research ethics committee. Again, anonymised data should be used, unless the study specifically requests identifiable information.
A situation could arise where there is a conflict of interest between a number of parties affected by a patient’s death. For example, you should only release information to an insurance company, when it is deciding whether to make a payment under a life assurance agreement, with the consent from the next-of-kin, or from the executor of the deceased’s estate. If the deceased patient has already consented to such a release before his/her death, then this is sufficient too.