The second institutional temptation is not toward active wickedness but toward sclerosis, groupthink and stagnation. Establish an iron triangle of doctors, insurers and government boards, tell them they must establish predictable standards for what treatments will be covered, and they will inevitably resist many of the experiments through which medical progress advances. In which case it will become more necessary than ever to allow families and individuals the freedom to refuse the consensus, and to pay for more radical options if they can.

There is, yes, a great deal of costly overtreatment in Western medicine. But there are also countless diseases where progress is agonizingly slow or nonexistent, a myriad of conditions where the official wisdom might be as mistaken as federal diet guidelines always prove to be, and many mysteries that medical science for all its genius has not solved.

Anyone who has watched a friend die young of cancer, who has battled with a chronic illness, or who has been touched — like the Gards — by a disease too rare to be adequately studied, knows that in the worst of medical situations an expert consensus only takes you so far. In the end you alone have to decide, on information at once imperfect and personal, in the knowledge that all your choices may be bad. And in this dark territory it is not expert confidence but a mix of hope and desperation that leads to breakthroughs and to cures.