Last week in my office hours, I faced the same question three times, which gave me pause for thought. A brief summary of the facts: Three female patients with active relapsing MS, which began in the mid-2000s. In all three cases, basic therapy with interferons and Copaxone was not able to sufficiently control the disease, leading to slight motor impairments. All three patients were switched to Natalizumab. Meanwhile, individual therapy duration ranges between 9 and 11 years – there have been no more outbreaks, MRI checks have been stable and the overall situation has significantly relaxed due to stability, both professionally and privately. Now, all three patients have tested positive for the JC virus and have a JCV index between 3 and 4.
Due to the long duration of therapy and the JCV index > 1.5, all three belong to the “high risk group” in terms of developing PML (progressive multifocal leukoencephalopathy). The risk is approximately 1:80 – 100. All patients are fully aware of this risk and have been sufficiently informed about the serious side effect. Nevertheless, all three want to continue therapy with Natalizumab.
All three patients have encountered resistance from their treating physicians regarding this wish. In one case, it even led to a patient no longer receiving any therapy at all – a development that was far more dangerous for the patient than continuing therapy.
We must also understand the medical side – the supreme principle of medical action is not to harm (“primum nihil nocere”). Therefore, the reluctance to continue Natalizumab therapy is understandable and the discussion about therapy alternatives is sensible. However, this should not be done rigidly and, as in one case, end with an affront and the termination of the doctor-patient relationship.
If we take patient autonomy seriously, we must be able to “endure” a situation – as described above. If a patient, knowing the risk, comes to a certain conclusion after careful consideration, this is basically fine. Of course, the patient must also be able to tolerate that their doctor has a different opinion.
A difference in content should by no means lead to a break in the doctor-patient relationship. It makes much more sense to remain in conversation and either agree on alternatives (which always exist) or jointly look for risk minimization strategies. Ultimately, it’s about the well-being of our patients.
