As many of you know, I am a long-time student of how we (as human beings, Western Christians, Latter-day Saints) face our ends, both personal and collective. The historical period I know best, roughly 1780-1850 or so, possessed a death culture that the Victorians and the Victorianists prefer to call the Good Death, though the radical French social historian Philippe Aries prefers the Beautiful Death, while I prefer the Holy Death. Though this death culture is complex and even ritualized to a surprising extent for the brutally anti-Catholic Protestant milieu in which it existed, I want to focus on one key piece, the necessity for foreknowledge in the face of death.
Aries traces it to medieval traditions that emphasized the need for a valorous indifference to death–if one could face death with equanimity, one had, in a sense, conquered death, or at least made of it a noble thing. Christians persisted in this tradition, emphasizing strongly that the deathbed (“agony” itself is a word meaning contest or struggle) was a time of trial, the moment for an individual to prove beyond doubt to herself or her family that she had been saved, that she was to “sleep in the bosom” of Jesus. To a surprising extent to us now, people savored the knowledge that they would soon die. It let them make final farewells, give appropriate sermons, pray, sing hymns (they loved Isaac Watts’ Psalms to that end, figuring that these were the same hymns the angels were singing, so they were showing up early for heavenly choir practice). Most of all it let them come clean with God, particularly as the Arminianization of American Protestantism left them vulnerable to the specter of “backsliding” or falling from grace.
This history is reasonably well known by most students of the period (though surprising lacunes persist). In complex and controversial ways, this culture changed over the last decades of the nineteenth and the first decades of the twentieth centuries. White American culture became more like one traditional interpretation of Chinese culture (representing many others), which withholds information about diagnoses of cancer or other terminal illnesses from the individual afflicted.
But now here we are in the twenty-first century. We have survived our wars and rumors of wars, our 1960s social revolutions, have welcomed the hospice movement and begun to confess the social consequences of attempts at limitless life prolongation. And still we die.
With this long preamble, I wanted to ask a few questions and generate some discussion, recognizing that physicians are often faced with the difficult question of how much to tell, to whom, and when.
First, if your physicians were reasonably certain your illness would be fatal within a week, would you want to be told that?
Second, if the same were true of your spouse or child, would you want the spouse or child to be told? Would you want to be told?
Third, do you believe that knowing one’s prognosis (the probable timing of death) dooms one to die earlier than otherwise?
Fourth, how certain would you want to be of a prognosis before electing to emphasize comfort and dignity over heroic medical therapy and life support? Would changing the variables (a month or a year rather than a week, 80% certainty vs. 90% vs. 50%) change your answers?