Exit This Way: Getting off the Merry-Go-Round of Mutual Pretense
What is Mutual Pretense? It is when everyone knows the party is over and the patient is dying, but all parties involved act otherwise. It is a masquerade of hope. It is denial and it is a burden. We owe medical honesty, awareness, and agency to our dying. This can be done with love. Its time to get off the carousel of unawareness. Exit this way.
He was dying, and fast — but neither of us knew it. Ten delicate, long fingers that could easily snap puzzle pieces into place just a few weeks earlier no longer flushed back with color when pressed. I leaned in to nuzzle and rabbit kiss my son’s cold nose. With maternal tunnel vision, I couldn’t see the big picture of all the pieces coming together to indicate that his body could not go on. The dire urgency of an intolerably high degree fever didn’t register. I didn’t see a life on the line; I saw a child in need of fresh, ice-cold washcloths tenderly compressed to his forehead. Another dose of Tylenol. And more time.
Two years of treatment against an aggressive form of acute lymphoblastic leukemia, diagnosed when he was six, had brought us to this juncture. You’ve heard this story before. My child’s life now hinged on the hail-Mary immunotherapy of chimeric antigen receptor T cells (CAR T cells). Chemotherapy and radiation had failed to mow down the cancerous weeds…
