Civil disobedience is not our problem. Our problem is civil disobedience.

A Patient Advocate’s view

Civil disobedience is not our problem. Our problem is civil obedience.’
Howard Zinn

Something terrible happened in healthcare that doesn’t benefit patients. Actually, it is what we patient advocates call ‘Dying is safer’. For some of the stakeholders in the Medical Industrial Complex it is safer to let patients die than to act. We can think of experimental medicines for patients with an unmet medical need. Why not give them that Phase2 medicine and ‘try it’? When discussed with the patient it will not result in a legal claim. Or at least it will not last.

This phenomenon has to do with accountability and not with compassion for the patient. In the Medical Industrial Complex, we are afraid for a claim and accept the death of patients when we do not ‘try to treat’.

I consider accountability and responsibility, from the human perspective, in the same category. We are accountable and responsible. Out of responsibility evolves accountability. The issue is that you can’t bring the Medical Industrial Complex to trial. Till one does..

We all know that this is wrong. In human nature are some peculiar features. Most people are obedient, look in another direction and work according to the rules. They are never disobedient and accept a tremendous amount of misery before they act. And sometimes they will never act and accept death.

It is not easy to solve, but it helps when we feel the misery of the people we ought to serve. Let policymakers and decisionmakers work for one day a week among patients that need their good decisions. Then they will ‘Do the right thing’. The closer you’re with patients, the better your decisions and the higher the quality of the output. It makes you responsible and accountable and it brings satisfaction.

Peter Kapitein
Patient Advocate Inspire2Live