Americans should start paying attention to their quality of death

Lauren Alix Brown writes: At the end, they both required antipsychotics. Each had become unrecognizable to their families.

On the day that Sandy Bem, a Cornell psychology professor, 65, was diagnosed with Alzheimer’s, she decided that she would take her own life before the disease obliterated her entirely. As Robin Marantz Henig writes in the New York Times Magazine, Bem said, “I want to live only for as long as I continue to be myself.”

When she was 34, Nicole Teague was diagnosed with metastatic ovarian cancer. Her husband Matthew writes about the ordeal in Esquire: “We don’t tell each other the truth about dying, as a people. Not real dying. Real dying, regular and mundane dying, is so hard and so ugly that it becomes the worst thing of all: It’s grotesque. It’s undignified. No one ever told me the truth about it, not once.”

Matthew tells the truth, and it is horrifying. Over the course of two years, Nicole’s body becomes a rejection of the living. Extensive wounds on her abdomen from surgery expel feces and fistulas filled with food. Matthew spends his days tending to her needs, packing her wounds with ribbon, administering morphine and eventually Dilaudid; at night he goes into a closet, wraps a blanket around his head, stuffs it into a pile of dirty laundry, and screams.

These two stories bring into sharp focus what it looks like when an individual and her family shepherd death, instead of a team of doctors and a hospital. It’s a conversation that is being had more frequently in the US as the baby boomer population ages (pdf) and more Americans face end-of-life choices. As a nation, we are learning — in addition to our quality of life, we should pay attention to the quality of our death. [Continue reading…]

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