Request for nondisclosure of information.

Has a patient’s family member ever stopped you outside the room and asked you not to share a diagnosis or key piece of information with your patient? If so, how did you react? And if this has never happened to you, how might you respond to such a request?

As a full-time palliative care doctor, I can tell you that requests for nondisclosure of information happens relatively frequently. We’re ethically obligated to share information with our patients if they want to know, but if they don’t want to know then we’re not obligated to share. Of course, we can’t just assume that our patient doesn’t want information because family members are saying so – we need to verify. This can turn into a pretty tricky situation, one that risks fracturing trust and rapport while compromising patient autonomy and right to know.

I’ve found that the best approach in this situation is one of curiosity and validation. Spend some time outside the room mapping out the concerns. “What are you most worried about?” or “Tell me more about your concerns with sharing this information” are great ways to start. Then respond with empathy and acknowledge and validate the often very human, and loving, emotions behind the request. Often times the family member’s afraid of causing more distress, or “speeding things up” due to depression or anxiety or added stress.

By acknowledging the emotion behind the request, and validating humanity, you can move on to the necessary next step: protecting your patient’s autonomy while also respecting the family member’s concerns. In my experience, the best way to do this is by clearly setting the expectation that if the patient wants to know, then we must share the information. If he doesn’t want to know, then we don’t need to discuss further.

I then negotiate for information sharing. I’ll say something along the lines of “I’ll ask if he wants to know while paying particular attention to your concerns.” But I won’t stop there – I’ll take it one step further by sharing exactly what I’ll say to the patient. After this, I’ll ask for feedback from the family. “What do you think of asking in that way?”

By validating the family member’s concerns and then aligning your strategy through negotiation, you’ll come to a shared communication approach where there are (hopefully) no surprises. This technique helps you tend to potential distress in your patient and their family, as well as team distress caused by fear of withholding information.