As non-pysicians, you are not comfortable with any of it. Tubes and wires and beeps and machines are added complexities to an already too deep unknown, mortality. You don't know their function nor their meaning (even if you do, you really don't just like I "know" the function of a carburetor but have never had my hands on one). They are symbols to you. A ventilator means life when death is eminent. The identity of your love one merges with this symbol of life-sustaining medicine. This places you are in an inadequate position to make death decisions: the medicine is no longer external but instead an intimate part of who your loved one now is. But we make you do it anyway. We make you decide on chance. And, consciously or unconsciously, a piece of us resents you when you make the "wrong" decision.
We also make the wrong decisions. Sometimes from the perspective of hardened practitioners who seen innumerable loved ones die and expect to see innumerable more. Sometimes it's from the perspective of scared individuals who see their own mortality in you or your loved one. And sometimes it's from the perspective of people hopped up on adrenaline and unskilled in the art of inaction, like a soldier in the heat of battle incapable of lowering his weapon.
The point is, individuals - patients and physicians alike - are not equipped to decide on death. You can't do it when a piece of you dies with your loved one. We can't do it when a piece of us dies with them either. Nor can we when that piece of us stops dying with them.
Decisions of futility need to be made at a policy level. We need to take it out of the hands of the individual. We need to free up the family to be the family and not the caretaker/decision-maker. And we need to free up the physician to be the physician and not the perceived hand of God. I don't suggest we make a death policy on all illnesses, only the most extreme, the ones where mortality is all but given and futility is obvious. The institution of medicine needs to start navigating patients and family through the maze of morbidity and mortality and not simply construct definitions which they are expected to piece together themselves.
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