The whole thing sounded very convincing to lay people, although it was clearly stated that “The therapy” was not yet recognised by the US Food and Drug Administration.

In a well written and meticulous way, it stated that “The therapy” had already saved the life of its inventor, and for about $1000 (£625) every patient could be treated in the same way and be healed. It was then that the patient's husband, browsing on the internet, found “The therapy” for her disease. They told me that no one had clearly explained what was going on-or were they preferring to ignore the reality? She was already connected to a ventilator, being fed with a tube, her body as well as her life almost destroyed. The patient had seen several other neurologists, more authoritative but less direct than me. I was compassionate but precise and sincere and suggested how they could prepare themselves for the remaining few years. So it was unusual for me to explain to my patient and her husband that she was suffering from a fatal degenerative disease of the nervous system and that the only useful drug would probably only delay her death and prolong the agony for her and her family. We prefer to ignore it and pretend there will be a happy ending.

Our Latin culture and famous sentimental attitude still reject the idea of an inevitable death. This is not ethical practice, nor is it right to treat patients as children, but it is common in Italy, where we are not taught how to deal with patients or how to give bad news. It is then up to them to decide whether or not to let the patient know about his or her fate. This experience is unusual for Italian doctors, who usually prefer to tell the patient's partner or relatives. Diagnosing an untreatable illness is a bad moment, and explaining it to a patient is even worse.

Download prolonging the agony