The thing that is more disturbing to me is that some of that wondering was worsened or maybe even brought on by the well intentioned (I hope) remarks made by the treating team. Something probably said in passing, yet in those situations, every last word is hung on to like a verse from Sacred Scripture. In this case, "his treatment was delayed". While technically true, it speaks volumes that it was necessary for the doctor to point out. The delays mentioned were due to the Holidays, or sometimes to the side effects. All legitimate reasons to delay, and the length of the delays would not have had an impact on the response. But here we are, a year later, and the suffering caused by those words continues. Maybe it was the doctor's way of assuaging his own uncertainty at why it went as it did. Maybe it was completely innocent. The effects were anything but.
It brought to mind other times I have had to "debrief" with a grieving family. When a friend died in his sleep in his 40's, the autopsy showed undetected heart disease. Did we all ignore his heartburn too readily as overeating? Would we do differently had we thought....? Did we miss something? 20-20 hindsight is usually a lot more clear than we would like.
Most of us in the medical profession don't do much debriefing, either with patients, families, or colleagues. I think it is much to our own loss. So much could be gained, and it shows the solidarity we share with the family at their loss. It is our loss too, after all. Not to the same degree, but nonetheless, clearly we have many whom we care for that touch us deeply, for whatever reason. Even those with a more casual relationship can effect us significantly, and those for whom we think we maybe could have done better, well, we can hardly go there for fear of losing our own sanity.
I am happy I was able to relieve some of the doubts of this boy's family. I pointed out that they clearly honored his wishes, and showed him a deeper form of love than many could have done by allowing him the degree of control over his treatments that they did. There is no higher love or honor we can offer.
Casual comments can wound very deeply. Debriefing can be healing. We in the profession should debrief more often and choose our words more carefully . I am glad we do as much as we do in hospice and palliative care.