Confidentiality case study: sharing information with relatives/carers
Assessing a learning disabled patient’s capacity to manage his own care and make important decisions
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.
Should the doctor…
- 1. Tell Mr Green it is essential to his care to involve his mother or another appropriate person?
- 2. Call Mrs Green, without telling Mr Green, to find out what she knows about his new friends and how he is monitoring his diabetes?
- 3. Nothing – Mr Green insists he is fine and has a new support group of friends to help?
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
1See Consent: patients and doctors making decisions together, paragraphs 64 and 65.
2The Adult Support and Protection (Scotland) Act 2007 (OPSI website) requires health boards in Scotland to report to local authorities if they know or believe that an adult is at risk of harm (but not necessarily incapacitated) and that action needs to be taken to protect them.
3The Princess Royal Trust for Carers publishes information on good practice for primary care, mental health and hospital based professionals, highlighting carers' need for information to perform their roles.