After the judgment of the complaints committee the Board of Directors of the regional hospital responded also. With the news that they could well imagine that I was angry and disappointed with the treatment I had received. And that they were very sorry for what happened to me.
Very kind of course, but then they go to the submitted complaints. And here it becomes verty remarkable.
They refer namely to the decision of the complaints committee that at the periodic checks I should had been informed about the new guidelines concerning the possibilities of Gleevec. And that the physicians also recognized that, but now the question arises whether the effects of treatment with Gleevec at a later date would have had the same result as a treatment in which this medicine was administered immediately.
Because, they reason, although I would have had some benefit in the treatment of this drug, the outcome would unfortunately may not have been the same if the directive had been different in 2010.
There are, according to the Board of Directors, in the meantime several international studies indicating that survival of GIST patients with Gleevec increases significantly, but that does not mean that it would have been the case in my situation. And that’s apparently a good reason to not administer a medicine at all.
It makes you wonder why they still treat people in that hospital, because in the end we all going to die. With or without medical treatment.
But that was not all. The Board of Directors subsequently explains that the doctors had made a clear decision not to share with me that the guidelines were changed, because they had wondered whether this information would not have been too stressful for me…
To be clear, we’re talking here about the same doctors who also failed to give me good information about the nature of the GIST tumor and the risk of metastasis. Who then had applied wrong diagnostics in the periodical checks, and not even recognized a nodule at the belly button as a visual indication of malignant metastases. But who, as was proved now, indeed had been aware of the existence and effectiveness of Gleevec, but simply had decided not to tell me that. For reasons that this information would be too stressful…!
I had, however, never seen or spoken a psychologist or psychiatrist, but apparently these doctors could perform an expert diagnosis of my mental state. And thereby apparently found that I had such an unstable personality, that I could not handle such information.
That is, to put it mildly, very remarkable. Because this information was not found in the decision of the complaints committee (nor in my medical files). But also because there is a Medical Treatment Contracts Act in the Netherlands whereby the physician is required by law “to inform a patient in a clear manner about inter alia the anticipated effects, the risks to the health of the patient, the alternative research or treatment methods and the prospects regarding to the health”.
But according to the Board of Directors these legal information requirements did not apply to the doctors in their local hospital.
I was initially indeed angry and disappointed, but now baffled and downright furious!