Dr. Margaret Isaac sits across the table from a father. His son, a high-school senior, was expected to recover from the hideous car accident. But the fat globules released by the marrow from so many broken bones reached his brain. Many weeks have passed without improvement. Margaret and the father discuss the details and logistics of ending life support systems; he says he needs one more evening to discuss it with the teen’s mother. Of course, of course. A pause wells up in the room. Then he says, “There’s just one other thing.” Of course, Margaret says. “Is this the right thing to do?” Margaret leans forward; her voice is warm, reaching for confidence. “Well, it’s a right thing to do.” The father wipes his eyes with a maroon bandana and thanks her.
Margaret visits two brothers. One, sleeping in his bed, has been at Harborview for fifty days. The other, sitting in a chair by the window, lives on the East Coast. This is his third and final visit; he’ll stay for the rest of his brother’s life. He asks – business-like, slightly wary – about Margaret’s training and background. She answers, then says, “Tell me about your brother.” What would she like to know? “What did he like to do?” Each morning he laced up his boots, anticipating a day spent outside. He worked as a farrier, which afforded him only what he truly needed: a trailer to live in, a pasture and stable (that he built himself) for his horses, a workshop for constructing mechanical things. Not long before his brain hemorrhage, his favorite horse had died. His brother found a piece of paper in his wallet that had several names and phone numbers written on it – his among them. He called all the numbers; one person came to visit. Margaret and the brother stand by the man’s bed. He opens his eyes and coughs. His brother passes his hand over the man’s face, but his eyes do not move. Both men return to their waiting.
The son of a stroke victim tries to imagine how his father would experience the world, if he were to regain consciousness: It is a field of light. There are no boundaries. He waves his hand back and forth, fingers reaching. Nothing to determine the edges of things. Margaret nods as the son talks his way toward the end of his father’s life. Four hours later, his mother and sister and brother-in-law have all come to the ICU room, said their goodbyes, and gone home, while bruises of exhaustion have bloomed under the son’s eyes. He has two final requests. Fifteen minutes alone with his father to say goodbye. Of course. That the older man’s body be donated to science. Margaret is stunned and grateful; she has never before received this request. The son and the doctor thank each other again and again.
It is not enough to care for the whole person, or even the whole family. The edges of palliative care extend beyond the physical. Where are the boundaries? Families come through Harborview’s doors, stand at bedsides, ask the staff and one another: What does it mean to be alive? What does another person experience? What sort of life would another person want to live?
The answers lie just out of reach. Of course.