Parent refuses consent – part two

Background

Fara was infected with HIV over ten years ago but received HIV treatment only sporadically during this period. Since arriving in the UK, she has started regular treatment.

Fara has been seeing Dr Jegede, a HIV specialist, at her local hospital. She has confided in him that she is very uncomfortable about letting people know she has HIV. She has trouble accepting her diagnoses.

Fara has a daughter called Amina. Amina was conceived after Fara contracted HIV.

Scenario

Fara is reluctant to consent for Amina to be tested for HIV. She tells Dr Jegede  that it would be difficult to explain the tests to Amina without frightening her.

Dr Jegede describes to Fara how this could be done sensitively without alarming Amina. 

He tells her that he and the healthcare team have a duty of confidentiality to both Fara and Amina, and emphasises that any test results would remain completely confidential and private.

He tries to make sure that Fara understands that he has a duty of care to Amina, as well as to her, and that he has to consider Amina's welfare. Fara still refuses to consent to Amina being tested.

Dr Jegede is concerned about Amina's welfare, but is also conscious of the risk of Fara disengaging from her own treatment if he applies further pressure. He is worried that this could result in a worse situation for both Fara and Amina and is unsure about how best to act on his concerns.

What the doctor did

Dr Jegede decides that he should seek advice on Fara and Amina’s care from senior colleagues who have had experience of similar issues.

Dr Jegede discusses Fara and Amina's situation, without revealing their identities, with a senior paediatrician and a HIV consultant. They advise Dr Jegede to keep talking the issues over with Fara and say that he should allow Fara some more time to get used to the idea of having Amina tested.

They also advise Dr Jegede to establish a timeframe with Fara for testing Amina. They tell him that if Fara continues to refuse consent for Amina to be tested, he should consider involving a multidisciplinary team made up of other HIV specialists, paediatric specialists and a HIV social worker.

They would be able to monitor the child protection issues.

Dr Jegede, having taken into account the relevant factors, decides to establish a timeframe of eight months with Fara. At the next appointment, he explains to Fara that he is sure that it is best for Amina to be tested.

He tells her that although it is not urgent now, he will need to involve other healthcare professionals in Amina's care if Fara does not agree.

Dr Jegede informs Fara that if Amina starts to experience symptoms earlier than that and Fara continues to refuse to allow Amina to be tested, he may need to take further steps, such as involving child protection agencies.

Dr Jegede sees Fara twice over the following months and continues to encourage her to have Amina tested. He also offers Fara access to voluntary and peer groups which provide advice and support.

What the doctor had to consider

• Doctors should ask a named or designated professional or a lead clinician if they are unsure whether a child or young person is at risk or how best to act on their concerns. If they are not available, they should ask an experienced colleague for advice (paragraph 1(h) of Protecting children and young people: the responsibilities of all doctors)

• They should ask for advice, if possible, without revealing the identity of the child or young person (paragraph 43)