This week I attended training in how to deal sensitively with families of patients in mental health. We began discussing difficult questions which we sometimes get asked by families. One of the common themes that comes up is concerns about prognosis, the future for the patient and their family, and 'is full recovery possible?'.
Really important, practical questions. Extremely difficult to answer, to really answer what that family are asking. I'm not sure that giving people a list of statistics for prognosis or recovery is all that helpful. They have a place in a really comprehensive answer, but I suspect that we doctors hide behind statistics because questions like this make us uncomfortable. It is hard to tell people that not everyone recovers or that people have relapses or don't return to work.
We need to acknowledge, however, that we do not know the future. We cannot say for a particular individual what is going to happen. We can make educated guesses, based on studies of the natural history of an illness, or on experience with previous patients. But we do not know for sure. In fact, expecting to be able to answer these questions without uncertainty is unrealistic.
What became evident as we talked was a deep reluctance among my colleagues to say 'I don't know'. It was even mentioned that saying those exact words will damage the therapeutic alliance between the doctor and the patient's family, so they should never be said.
But how can we say that we have built a therapeutic alliance if we cannot even acknowledge uncertainty. I think people know that we are fudging and uncomfortable with the question. This damages their trust in us more than admitting we don't know. Saying 'I don't know' opens up a dialogue that includes fears for a bad outcome but also the possibility of a good one. Difficult, confronting questions, with answers that we do not clearly know are an opportunity to talk with the family about what has provoked the question. It gives the chance to educate them about what we do know, to support them in the uncertainty of what we do not know, to ignite in them the hope of recovery.
Where did we get the idea that we are not allowed to be uncertain or not know? I think that our empathy for and alliance with patients is strengthened by admitting that there are some things we do not know. I also suspect that we may couch our reluctance to express not knowing in delicate feelings for the patient or the therapeutic alliance but we are actually protecting ourselves. We are the ones who do not want to hear that we do not know.