Refusal of MRI-investigation

Question

My daughter suffers from CF with a severe pulmonary involvement. One year ago, a MRI-investigation had been done in order to find out if the mostly destroyed left lower lobe should be removed (because probably lesion). As the rest of the lung did not look much better, this was disregarded. Now another investigation should be performed. My daughter refuses this, even with anesthesia she does not want to have this done. I do not see the benefit of this, as an operation is out of question at the moment anyway and the child is doing bad very often, especially from the psychical point of view. Therefore we want to do only those things to her that have to be done absolutely (she needs oxygen 24 hours a day). Now we are put under pressure from the outpatient clinic. Am I allowed to refuse my assent for such an investigation?

Answer

Hello,
Your question could be answered shortly, by confirming that you as the legal guardian or a mature patient himself can always refuse an investigation or therapy. You can not be forced by a physician to diagnostic measures and/or to a therapy.
However, even if it sounds so easy and simple, it is not like this in the everyday life, as there are human beings behind the recommendations and decisions and especially the patient is affected. Therefore diagnostic and therapeutic measures shoud always be discussed in detail with the patient and/or the legal guardian in order to make the reasons for the recommended investigation or treatment clear to both sides, to the treating person as well as to the patient.
Sometimes it even makes sense to perform investigations that have no direct consequences at that timepoint, but can be very helpful or even be of an essential meaning for later decisions and treatments.
By this I want to motivate you to talk again to your CF-specialists in charge about your questions, fears and thoughts. Here, the confidence in the treatment/care offered in your CF-centre is very important. If this confidence is disturbed, then problems can occur in each communication. In such a case it makes sense to get a second opinion at another competent CF-centre.
However, you cannot get a second opinion via the internet, because a personal discussion and the knowledge of all relevant findings is necessary.
I would like to give you some information about the MRI of the lungs. Probably this might help you for future talks. The MRI-investigation of the lungs is not an established or routine investigation of the lungs yet. This investigation is done in Germany only at a few specialized CF-centres. Meanwhile the hospitals gained positive experience on that topic and the investigation seems to present a favourable measure of investigation for the course of the CF-illness. Due to an MRI, x-ray images probably can be spared and therefore the radiation exposure of the patient can be reduced (with an MRI a magnetic field is used, which is thought to be free of side effects for the patient, there is no radiation exposure here).

I hope to have helped you with my explanations and wish you to make the right decision for your child.

Yours sincerely,
Yours Dr. Christina Smaczny

08.07.2008