“He's in serious trouble—someone better talk to the mother about it,” said the nurse, as I approached the patient's room. As the attending physician, I was the designated “someone” who had to tell a mother that she would be taking her teenage son home to die.
I paused in the hallway to review the patient's chart. The boy had a neuro-metabolic degenerative disease. He had gradually lost physical strength and coordination to the point of requiring assistance with simple daily activities. He had been admitted many times in the past year for dehydration, pneumonia, and seizures. He was the youngest child of a poor, small, frail woman who had tried to care for him at home despite her recent surgery. While attempting to reposition him in bed, her surgical sutures had split open and she was forced to bring him to the hospital. The boy had a severe infection that caused multiorgan failure. His health deteriorated rapidly despite modern medical treatment. From this point on, there would be more caring than curing.
It was a sunny fall day, but the room was dark and quiet. The mother had pulled the shades down, hoping her son would get a few more moments of rest.
“Good morning, Ma'am,” I said softly. She looked up slowly, and a weary gaze searched my face for answers to her unspoken questions. She seemed detached as we discussed his treatment. She had previously indicated she wanted to take her son home to his family and friends, so her question was not entirely unexpected.
“Dr. D, when can I take him home?”
“Let me talk to the hospice …
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