Parent refuses consent – part one

Background

Fara was infected with HIV over ten years ago. 

Fara was born in a sub-Saharan African country. She lived there with her husband and seven year old daughter, Amina, until her husband died a year ago. 

Fara and Amina have spent the last six months living in the UK with Fara’s parents.

Since arriving in the UK, she has started regular treatment. She has been seeing Dr Jegede, a HIV specialist.

Fara has had problems accepting her diagnosis. She has confided to Dr Jegede that she is very uncomfortable about letting people know she has HIV.  She is also anxious that her family would react badly if they knew.

Scenario

Fara comes to the hospital for her third appointment with Dr Jegede. He takes her CD4 cell count and reviews her overall progress. It is good.

Dr Jegede asks Fara whether Amina has been tested for HIV.  Fara is very reluctant to let Amina be tested. She becomes upset when Dr Jegede brings up the subject. She tells Dr Jegede that Amina has always been healthy and that she would have become ill by now if anything was wrong.

When Dr Jegede presses Fara, she adds that she is conscious of the stigma attached to HIV infection. She doesn’t want Amina to have to cope with the upheaval a diagnosis would bring to her life.

What the doctor did

Dr Jegede can see Fara’s distress and takes her concerns seriously. 

He asks her to think carefully about the benefits of agreeing to testing Amina. He tells her that the earlier doctors make an HIV diagnosis, the more options they have for treatment and the better the prognosis. He reminds her that treatment for HIV infection can be extremely effective.

Dr Jegede also describes the risks of not testing Amina. He stresses that it is possible that she is infected with HIV even though she is healthy now. He tells Fara that if Amina is infected and is not treated, she is likely to become very ill at some point in the future and could eventually die as a result.

What the doctor had to consider

• Doctors must consider the safety and welfare of children and young people, whether or not they routinely see them as patients. Doctors who care for adult patients must consider whether their patient’s condition or behaviour poses a risk to a child or young person (paragraph 2 of Protecting children and young people: the responsibilities of all doctors) 

• Doctors should work with parents and families, where possible, to make sure that children and young people are receiving the care and support they need. Good communication with parents is essential (paragraph 8) 

• Doctors should normally discuss any concerns they have about the safety and welfare of a child or young person with their parents. Being open and honest with families, and avoiding judgemental comments or allocating blame, can encourage families to cooperate and help children and young people stay with their families in safety (paragraphs 20 – 22)