According to the Terrence Higgins Trust, there were just over 100,000 people living with HIV in the UK in 2018. This included around 7500 people who were HIV positive but not yet diagnosed.

Like any medical condition, it is important that a patient’s right to confidentiality is respected. A study of just over 50 cases involving HIV positive patients reported to the MDU over the past five years found that confidentiality concerns are the most common query raised by members involving HIV positive patients.

Patient expectations and confidentiality

Patients come to see their doctor in the expectation that what they say will be kept confidential and trust is essential to the doctor-patient relationship. Doctors have an ethical and legal duty to protect patient’s personal information (GMC: Confidentiality: good practice in handling patient information, paragraph 2) and generally, a patient’s consent should be sought before information is disclosed about them.

There are occasions when doctors may find themselves in a position where breaching a patient’s confidentiality is necessary, for example, by law (paragraph 17) or in the public interest (paragraph 22/23), such as when there is a serious risk of harm to another person. Where this is thought to be necessary, it is important to seek advice from senior colleagues. The MDU can also give advice on matters relating to patient confidentiality. Where a patient has a serious communicable disease, such as HIV, there may be instances where not disclosing information about the patient could expose others to a risk of death or serious harm (paragraph 66).

If you did believe you have good justification for disclosing information about a patient without their consent, you should let them know what information you intend to disclose, why and to whom, assuming it is safe for you to do so.

HIV status

HIV is a communicable disease which means it can be passed on from one person to another under certain circumstances. Unlike other communicable diseases, HIV is not a notifiable disease and, therefore, when it has been diagnosed in a patient, it does not need to be reported under the notifiable disease reporting system.

Where a patient has an infection, there may be concerns in some cases that this could be passed on to others and those at risk may need to be informed. However, it is important to note that because a patient is HIV positive it does not mean they can transmit the virus to others. Where a patient has an undetectable viral load, there is no risk of transmission of the virus to someone else.

Although rare, there are some instances when a doctor may need to inform others of a patient’s HIV positive status. Here are some examples of when it may be necessary. However, it’s important to stress that where possible, patients’ personal information should be protected. Exhausting all other options before sharing personal information without consent is preferable.

Informing other healthcare professionals

If a patient asks that their GP or other healthcare professionals involved in their care are not informed about their HIV status, it is important to explain to them the importance of other clinicians being aware. It means they can take this into account when treating the patient for other conditions that may or may not be related to their HIV infection. Other healthcare professionals will need to be alert to any complications that could arise so they are picked up early and what medication the patient is taking.

Knowing the patient has HIV could avoid other unnecessary investigations. If the patient understands the risks to themselves of other treating clinicians not being informed but is still adamant they do not want these clinicians informed about their HIV status, their wishes should be respected. They should be made aware that they can change their mind at any time.

It is important to explore with the patient their reasons for not wanting other healthcare professionals to know about their HIV status and to discuss their concerns.

If you are able to reassure them, they may agree to inform them in some circumstances.

Members are sometimes concerned about the safety of staff performing invasive procedures on these patients. However the adoption of universal precautions against blood borne infections should protect your colleagues, whether or not they know of the patient’s HIV status.

Informing partners

If a person who is HIV positive won’t tell a partner who is at risk of transmitted infection, you may tell that person if it is likely that they are at risk of serious harm and the patient cannot be persuaded to inform them (GMC: Confidentiality – disclosing information about serious communicable diseases, paragraph 13).

It is important to discuss with the patient their reasons for not wanting to inform a partner. If they feel unable to do this themselves, they may agree to the doctor or other professional doing so on their behalf or they may feel more comfortable doing it themselves, with support.

If another person is at risk and may need prophylactic treatment but the patient has not given permission for this information to be passed on, it may be appropriate to pass on limited information to an appropriate person, in the public interest. The patient should be advised of the actions a doctor intends to take and their justifications for doing so. 

Death certificates

In some instances, patients or their relatives may ask that the HIV status is not recorded on a death certificate. Although the duty of confidentiality continues after death, it is important that death certificates are completed honestly and fully and a doctor could be criticised for not having done so.

If a serious communicable disease such as HIV has contributed to the death of the patient, it is important to explain to patients and their relatives that this must be recorded (GMC, Confidentiality: communicable diseases, paragraph 19).

Communicating with sensitivity

As patients expect their communication with doctors will be kept confidential, patients also expect their doctors to treat them with respect and sensitivity. Communication issues often feature in cases we work on. For cases involving HIV positive patients, these have also included patients raising concerns that they felt judged or that homophobic comments had been made. Other complainants were not satisfied with the way in which it was suggested that they undergo a HIV test or how the result was given to them.

It’s important to maintain good communication when broaching sensitive issues and when breaking bad news.

This article was originally published on 04/09/2020 and was updated on 27/11/2020.