“I need to operate in the next 48 hours or Michael will die.” The weight of those words. The life-altering power behind them coupled with the trust and faith we had in the surgeon made deciding to act easy. We could not have seen it at the time, but those words irrevocably changed our family’s path. Those words set events in motion that resulted in horrible suffering for our only son Michael. Those words left us questioning absolutely everything about what is right and ethical in medicine. Since Michael’s passing, we have thought long and hard about how we allowed words like these to remove our choices and our voices. And you are reading this now in the hopes that understanding can enable every patient, family member and physician to know their role in preventing the unthinkable.

This ‘worst-case’ scenario turned into the longest day of Michael’s life, lasting 32 months (Figs. 33.5 and 33.6). What set the stage for the catastrophic events that ultimately took our son’s life was that we believed those words. We believed this neurosurgeon, because he was the neurosurgeon. When he told us that there was a colloid cyst in Michael’s brain and that it was life threatening, we believed him. When he told us it was a “walk in the park,” we believed him. When he told us he had performed this procedure many times, we believed him (Table 33.1).