The self-determining patient is all the rage – politicians emphasize this claim again and again. It is an essential part of the new Patient Rights Act and doctors are often criticized for their approach being too “top-down” and “incomprehensible”. To get straight to the point: I find all efforts to promote the informed patient good and important – especially with MS, I wish for nothing more than the “self-determining” and well-informed patient who discusses with me on an equal footing. “Shared decision making” – or the “joint decision-making by doctor and patient” with regard to diagnostics and therapy is the keyword. We know that, especially with chronic diseases like MS, this is an essential basis for long-term successful therapy and a stable, trustful doctor-patient relationship. So there is no question, a “shared decision-making” is desirable. However, experience shows that this is not quite as easy to achieve in reality and sometimes – in my experience – meets with incomprehension.
The discussion with the patient is particularly important in the phase of diagnosis. When I inform a patient about the MS diagnosis, I cannot expect him or her and their relatives to know exactly what kind of disease this is. Often patients only associate certain keywords or images with Multiple Sclerosis and very rarely have really differentiated knowledge. Accordingly, communication during diagnosis is very asymmetric, not to mention that most patients in this situation cannot think clearly anyway.
In this first phase, I try to present the basic features of the disease. But as a rule, most patients need a break at this point to properly inform themselves. Honestly, in clinical everyday life, when the waiting room is full, we do not necessarily have the opportunity to give a comprehensible “lecture” on the topic. Therefore, I often arrange a further appointment (usually two weeks later) and ask patients to inform themselves during this time using other sources (info brochures, internet, etc.) and then come back with their questions. This usually works quite well – but of course there are always people who (understandably) cannot cope with the situation and completely switch off.
In the next phase, when a therapeutic decision has to be made based on knowledge of the disease (therapy yes/no?, if yes, with what?, if no, what then?), the informed patient is almost even more important. When the patient decides on a therapy, in the sense of shared decision-making, I often ask the opening question “And with what could you imagine treating?”. Not infrequently I then hear (almost horrified) “well, I don’t have the right idea, you must know that, you are the doctor”.
Sure, I am the doctor – and making a (short) decision from my point of view would be the easiest exercise. But this is precisely what is socially (rightly) not wanted, and what medically is not as useful as a joint decision and discussion about the possible therapeutic options. However, I must add that there are of course some patients who need to have the decision made for them. But the majority – at least according to the statistics – benefit from shared decision making.
However, this means that I must also expect from my patients that they inform themselves, read up and deal with the topic. Without solid knowledge, I cannot expect to have a discussion with my doctor on an equal footing. In return, however, this also means that the doctor must allow and respect the patient’s opinion. This also applies to the refusal of therapy.
Perhaps an unnecessary blog – because it discusses something that should actually be self-evident nowadays? I don’t think so, because I recently had a lot of patients who seemed completely surprised that their cooperation is not only desired, but absolutely necessary and were almost a little angry that they first got “homework”. The topic “self-determining patient” is, in my view, a topic that concerns not only the doctor, but also the affected patient.