When Families Secretly Intervene in Patient Care

February 2, 2015

It's hard treating individual patients, complicated treating families, and extremely difficult when families want to be "anonymously" involved.

I have written before about patients' family members getting very involved in their care. There are certainly times when it is appropriate, perhaps even necessary for a relative to advocate for the patient, although there are also certainly boundaries.

It is much more difficult to decide what to do when a family member or friend wants to be involved behind the patient's back. I'll give you a couple of examples.

I had a new patient coming in. He is a young man, in his early 20s. I had never met him or his family before. The day before his appointment, his mother called and left a message that she wanted me to call her because there were things she wanted me to know that she did not want to discuss in front of him. I felt that was completely inappropriate. There was no reason for me to believe at that point that the patient was not a competent adult, able to discuss things with me pertinent to his care. I told my staff to let her know that I would be unable to return her call and that I could not discuss his case with her without either implied or express permission. And upon meeting him, it was clear that he is a perfectly independently functioning adult.

His parents did come with him and they participated in the conversation, so I do not believe he is hiding anything from them. I did not mention the phone call. I don't know what the mom wanted to tell me beforehand. I don't really care. I understand when you have a child grow up with a chronic illness that you are so used to be involved in their care and being the caretaker that it is difficult to relinquish that role when they reach adulthood, but at some point, they need to be their own health manager.

A much more difficult case, perhaps one with legal ramifications, belongs to one of my colleagues. There is a patient who is on testosterone replacement. The wife called the doctor to say that the patient is very aggressive, almost abusive, and wants the doctor to discontinue the testosterone. And allegedly, the patient's primary-care physician suggested that to the wife as well (although he didn't call the endocrinologist to discuss it). The wife doesn't want my colleague to tell the patient that she called for fear that he will get angry at her.

Here's the problem: There is no medical reason to stop it. His testosterone levels are not excessive, and he is a perfectly well-behaved individual both on the phone and in the office. He is having no side effects from the medication. So how does one justify discontinuing it? Is it even related to his behavior? Is he being aggressive? Abusive? What if he hurts his wife or kids? My colleague can't even discuss it with the patient and doesn't know what to do. I didn't know what to tell him either. I suggested that he talk to a lawyer.

It's hard enough treating individual patients. It's complicated treating families. And it's extremely difficult when families want to be "anonymously" involved.