Confidentiality case study: sharing information with relatives/carers

Assessing a learning disabled patient’s capacity to manage his own care and make important decisions

Part 1

Mr Green is 22 years old and has moderate learning disability. He likes to be as independent as possible, although he lives at home with his mother and relies on her for practical support, including helping to monitor and treat his Type 1 diabetes and to attend appointments, which he often forgets without her reminders.

Over the years, Mrs Green has developed effective methods for explaining to her son the risks of failing to take his medication, as well as the importance of knowing how to identify the signs and symptoms of hypoglycaemia and hyperglycaemia. This all helps Mr Green understand why it is important, for example, to monitor his diet or to modify his insulin dose. Mr Green and his mother have a close but sometimes difficult relationship as a result of Mr Green’s bouts of depression and occasional mood swings. In spite of this, Mr Green trusts his mother and seems to understand that he needs her support.

Mr Green has a good relationship with his GP, Dr Praed, who is keen to enable his patient to make decisions about his own care wherever possible. But Dr Praed has always found it much easier to communicate with Mr Green when his mother attends appointments and gathers that she helps him to manage his condition effectively on a day-to-day basis.

Following one particularly bad argument with his mother, Mr Green calls to tell Dr Praed that he no longer wants her to be involved in his care. Knowing the important role that Mrs Green plays, Dr Praed is concerned about how well Mr Green will manage and arranges an appointment to discuss and review the situation.

Mr Green does not tell his mother the date of the appointment, which he then misses. When he does attend a rearranged appointment at the surgery, Dr Praed is concerned to learn that he has not been monitoring his diabetes and has been binge drinking, something he has not done before. Mr Green informs Dr Praed that he has been staying with some new friends, who he says will be able to help him in the future and, despite Dr Praed’s suggestion that he should involve his mother, Mr Green is adamant that he does not want her involved.

Dr Praed must start with the presumption that Mr Green has capacity to make the decision: He has until now been able to make decisions about his care, albeit with his mother’s support.¹

It may be appropriate for doctors to encourage patients to consent to disclosures they consider necessary for their protection, and to warn them of the risks of refusing to consent; but they should usually abide by a competent adult patient's refusal to consent to disclosure, even if their decision leaves them, but nobody else, at risk of serious harm (paragraph 51).²

Even if Dr Praed is of the view that Mr Green lacks capacity to make this decision, he should still try to persuade him to allow his mother (or other appropriate person) to be involved in the consultation if he thinks that is necessary. A disclosure of relevant information might be justified, even if Mr Green refused, if Dr Praed judged that he lacked capacity and that disclosure is essential to his best interests (paragraph 61).

Mrs Green’s involvement has been integral to Dr Praed’s successful relationship with Mr Green; but Dr Praed will need to consider whether Mr Green would regard his approaching his mother for information to be a breach of trust (paragraph 66).³