After the surgery I am recovering at home on the couch. Equipped with blanket, tea, remote control, books and painkillers. I feel moderate, more from the painkillers than the surgery. What a ***pills. I can’t even put into words exactly how I feel.
I think of the book The House of God, by Samuel Shem, from whom I got the title of this blog, and how true that statement is. The patient is the one who is sick. The patient and no one else, and it’s hard to get across what that means.
Shem means otherwise. He means: Doctor, keep your professional distance. When you get too carried away with the misery, the emotions of your patient, you can no longer reason clinically, you can no longer keep the medical overview. Shem is right. Professional distancing is necessary, and for most physicians this goes hand in hand with great commitment. However, which is different from really feeling what the disease means for the patient.
This is not a call to make doctors and nurses-to-be seriously ill before they can start their profession. Nevertheless, no matter how involved you are as a doctor or nurse, you are more or less healthy at your desk. You don’t have diarrhea (IBD) twenty times a day, half of your skin surface isn’t covered with red, scaly itchy patches (psoriasis), you’re not literally stiff from stress (Parkinson’s), you don’t have that ten days a month a headache that you cannot open your eyes (migraine). You write down these complaints neatly in the file, you think: ‘Gosh, this is bad’, and you do your best to treat or nurse the sick person as well as possible. The extent to which the noted complaints and symptoms affect the life of the patient and his environment remains an abstract fact. The patient is the one with the disease.
‘However involved you are as a doctor or nurse, you are more or less healthy at your desk’
Of course, this abstraction also applies to side effects. All treatments, all active medicines have side effects. Sometimes they are so annoying that a treatment has to be adjusted or even discontinued. The more serious the disease and the more convinced the doctor of the great benefit of the treatment – often the case with cancer – the more willing to accept side effects. The patient suffers in silence, just like the doctor convinced of the usefulness and the higher goal to be achieved. I’ve been prescribed a lot of chemo and have seen few patients develop a sore throat because of the side effects.
But sometimes the side effects are such that the doctor starts to feel them in a derivative form.
I give an example. Around 2005 it was known that you had to treat non-small cell lung cancer with chemotherapy. We knew that one of the drugs had to contain platinum. But we didn’t know yet which agent to add. There were four candidates. Middle V had very good papers. (If you now think: ‘why don’t people just say what that drug is called, then I understand it much better’: people are not allowed to do that. I write in a personal capacity, but because I work for a pharmaceutical company, I am not allowed to say nice or unkind things about a named medicine Act on the Medicines Advertising, sorry, nothing can be done about it.) Agent V, therefore, was very effective against the tumor and – very important in the Netherlands – it cost almost nothing. Yet it never worked with substance V. It was, especially in comparison with the other three, very toxic. And toxic in such a way that the patients felt compelled to visit the ER. In that case, the person who prescribed drug V is called and may come and inspect the damage. I am convinced that this fact has contributed to the fact that V has lost out to the other classical chemotherapeutic agents for this indication.
Because if you have to come to the emergency room with some regularity, during office hours, in the evening, at night, in the weekend for a side effect, then as a prescriber you will feel for yourself that it is not such a nice remedy. Suddenly it is not only the patient who suffers, but the doctor as well. The side effects come off the paper, as it were, and become tangible, tangible.
The professional distance is useful and necessary. That is beyond dispute. But as a doctor occasionally to feel what it means to have a disease, to have to undergo treatment, to tolerate side effects, that means that treatment choices are better tailored to the sick person, the patient who has the disease.
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