What is quality in end of life care?

What do we want in the last days of life?  We want no pain. We want simple dignity, the physical kind where we clean ourselves, organize our medicine and command our bowels.  As important is the complex dignity of choosing where we spend our final days, make tough decisions for ourselves and, as much as possible, live as a person, not a patient.  It occurs to me that these critical building blocks are foundation for a greater quality goal.  And that, simply, is art.

In the 1920s and 30s, revolutionary psychiatrist and theorist Otto Rank taught that all art was based in the primal fear of death.  By art, he meant not only that which we mold with paint, stone and clay, but any creative activity.  Rank would argue that the architect who designs a bridge, particularly of novel design, is dealing with his fear of death.  The attorney, who develops a new argument, is driven by concerns about his mortality, even is the chef who bakes a complex and colorful pastry.  Rank believed that we cope with our coming death by trying to develop immortal creations and we pour our anxiety and confusion into creative activity and attempt to develop constructs through which we live forever.

Whatever your thoughts about Rank’s hypothesis, it is worth considering that when we think about our wishes for the final days of our lives and what we mean about “quality,” perhaps it is more than common sense goals, such as pain, control and dignity.  Perhaps a “good death” is marked by the ability to create, develop and invent.  Perhaps, a “bad” death is one that cuts us off from the chance to contribute to society and to tomorrow. If we are so isolated, so drugged, and so obsessed with basic biologic functions that we fail to find precious moments when we press figures into clay, teach our grandchildren, read and respond, or play an old melody, perhaps that is when quality truly vanishes.  When we lose the opportunity to create we lose a path to the infinite and are severed from a vital connection to the wellspring of hope.

The importance of this idea, working toward creating artful time at the end of life, gives doctors, patients and families, goals beyond physical comfort.  Certainly, through the rest of our lives, being able to contribute, make a difference, if only in the context of family and friends, is what drives us each day.  If we are healthy, none of us starts each morning by saying, “Well, I wiped my bottom, took a shower and I am not to sore; that’s great, because then I have nothing else to do today.”  On the contrary, while we must never take for granted these simple actions, we feel complete only when we have moved on through the hours to interact, love, learn and, I would suggest, create art.

I like to ask my patients, if it is not self evident, “About what are you passionate?”  For many it is children or grandchildren, for others travel and exploration (which forms new experiences, new ideas and transforms us and is therefore art), some teach, others are absorbed by active or passive sport, many volunteer in their town or church and a few are what society would readily recognize as “artists.”

However, I believe that all of us need to create. All of us need to change our worlds.  All of us need to seek a more pure and wondrous tomorrow.  I believe that since the end-of-life is about living, not about being dead, if we are to find hope and comfort, we must continue to pour our souls, our minds and our hearts into every changing art.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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