Effective treatment discussions in IPF: the doctor and patient view


We’re meeting here today to talk about how we can optimise discussions on treatment possibilities and care in IPF. IPF is a really horrible disease. For most people it’s a one-way street, and unfortunately it’s a very short street. When I started to realise this was a serious disease and I was going to die from it, that’s when you go through those emotionally charged periods when you talk to a doctor and you don’t hear what they say. I think it’s very important as a doctor that you realise the impact of the message you are going to give to the patient. Most people have never heard about IPF, and then you’re going to tell them that it is a progressive disease, that it is a deadly disease. That’s quite a lot to take in as a patient. I know some really good stories – doctors who are really excellent and take time to explain and they have the nurse waiting for the follow-up conversation afterwards. As well as being diagnosed, they’re being told what the treatment options are, how they can make the best of their life. But I know cases where doctors have said “You’ve got IPF, you’ll probably die in 3-4 years, come back in 6 months’ time for a check-up.” So you know, there clearly is a job to do in how to make the most out of those conversations. In my ideal scenario, every patient gets the chance to speak up, share worries, and has a true feeling that his or her voice matters in decisions, and preferably I also create a situation where the patient starts asking questions to me and learns about possibilities. If you take a decision together, the chances of the decision being successful are, I think, great. I think the patient should walk out of your consultation room with a realistic view on how the future is going to be, but also with hopes that we can help prolong life and make the quality of that life as good as possible. It’s really allowing time and empathy, really. How do you put yourselves in the shoes of the person you’re talking to, and that you understand about their lives and how different kinds of treatments may or may not affect them? The doctor and the patient need to have the time to really make sure that that is a good two-way communication, and that the patient really understands and has a chance to put their views across in a way that the doctor can understand. I think communication is crucial because in the end we’re not talking about treating lungs, we’re talking about treating people. That really makes it crucial that you see what people want, what they fear, how they see their future, and if you have no clue about that as a doctor you’re only treating lungs and you’re not treating people.