If about us, not without us!
March 18, 2014

hands‘Give people rules and they stop thinking for themselves’. I actually believe this to be true. We’re always talking about our own responsibility and free will and do not realise that rules do nothing else than impose limits on our own responsibility and free will. Or worse than that; we do realise it, but we do nothing about preventing the number of rules from increasing. Our own responsibility shrivels and free will only exists in our memory. We stand by and do nothing; we do not dare to go against the flow for fear of being rejected. When something goes wrong, there is always a call for more rules and punishment, and if you do not join the cry for more rules, more severe punishments and drastic measures, you are very likely to be accused of not wanting to solve the problem. It is exactly our own responsibility and free will that has to provide the solution, however. Away with those rules: have doctors and patients decide for themselves. Of course patients should be the ones to decide, it is their life after all.

I recently saw a programme on TV about the differences in patient care in the Netherlands and Germany, among other countries. A patient went to Frankfurt for advice on metastasized breast cancer and visited Dr. Vogl, a respected intervention radiologist at the University Hospital in Frankfurt. Dr. Vogl found that the patient might benefit from TACE-treatment. He did not guarantee success, but informed her that there were chances of success based on his knowledge and experience of this treatment and the diagnose the patient was given. Doctor and patient then discussed starting the treatment. Dr Vogl took his time and made the patient feel respected and heard.

Sometimes patients decide to go abroad to be treated. It is uncalled for to say that treatments there are inadequate, or that they offer false hope. Here is a patient who is desperate because her breast cancer has metastasized, she was told that there was no more treatment available to her and she refused to accept this because she is just as desperate to see her children grow up. If she then turns to an excellent physician in Frankfurt, it is only right for us to support her. To advise and assist her with knowledge and experience. We left this woman to her own devices by telling her there is no more treatment, and simply say on TV that ‘going abroad without thinking carries risks’. There may be complications; she may even die! This is yet another example of the unnecessary divide between patients and doctors. Patients like this woman can always be treated, as long as there is life, there is hope. This is what care providers and health insurers must understand. Everyone wants to see their children grow up and become grandparents. We want to see everyone grow old happily and healthily. If care is offered abroad by respected academic institutions, why not bring it to the Netherlands, and until that time reimburse patients for treatment abroad. By the way, Dr Vogl’s suggested treatment is also available in the Netherlands, but is kept from this woman and mother because she does not meet the set requirements. Dr. Vogl expresses the situation very well. Treatment in the Netherlands is at the highest possible level, but everything is covered by rules and protocols; 5% of patients do not comply with these rules, which is why Dr. Vogl treats them personally.

If we can offer the best treatment in the Netherlands, why not offer it to all patients?  I’m a great supporter of health care in the Netherlands; doctors and nurses have only ever given me the best possible care. I know we can go the extra mile here for patients who refuse to give up. Don’t tell me that patients sometimes do not want to go on, or even worse that you as a doctor think that the patient should not want treatment anymore. Quality of life is something patients and their loved ones decide on. What is enough for one person is not necessarily enough for another.

The internet and broadly available information has led patients to the best treatment, which we are lucky to have available in the Netherlands in almost all cases. In some cases the best treatment is found abroad. Oncologists step down from you ivory towers and meet with patients to discuss the options of bringing treatment to the Netherlands. Leave patients, oncologists, and health insurers to discuss and solve this together. Let patients decide, it is about them. We should be aware that we all become patients in the end, the time that you need some form of treatment will come. Whether in your capacity as employee, policy holder, or voter. Healthy people and patients, boundaries are blurring: ‘If about us, not without us’.