The story of a woman who survived the Boston Marathon bombing is a sad but perfect illustration of the tension that often comes up in a patient-doctor relationship. The tendency in American healthcare is to treat, treat, treat. When a patient says, “No more,” or simply, “No,” this disagreement can break down communication.
Last week Mashable did a fantastic job telling the story of Rebekah Gregory. Her left leg was shattered from the knee down as a result of the bombing last year. She has been through 16 reconstructive surgeries and takes Tylenol 3, Cymbalta and Celebrex regularly. She says the pain meds provide only a minor distraction from the pain. A year later, she is ready to stop fighting to save her leg. The story opens in her doctor’s office and shows that the doctor is not comfortable with her suggestion:
“I think I’m ready to chop it off.”
Rebekah Gregory is weary — confident one moment, hesitant the next. Staring down at the stitches in her left leg, she emits a nervous laugh. “I don’t know. I mean, I know we’ve done so much to fix it. But I just —”
She pauses and looks down at the floor.
Her doctor leans against a table, eyebrows knitted. He runs a hand through his salt-and-pepper beard. He exhales and looks out the window.
The sound of cars from the nearby highway fills the silence — horns honk, tires screech. She bites her lip and waits for his response.
At first, she agreed to the 16 reconstructive leg surgeries, sitting through the skin grafts, the pain meds, the weeks of bed rest and therapy. She did it without much question. They know better than I do, she kept telling herself. This might work.
But a year later, Rebekah, 26, is tired. The medical bills alone are enough to withstand. She’s still wheelchair-dependent; walking is nearly impossible. And the pain from her leg is even worse.Resting, standing and sleeping — it doesn’t matter, she says. Everything hurts, “like an 11 on a scale of one to 10.”
The main problem is Rebekah’s foot is drifting inward. The bomb destroyed tissues and bones, and because of where they’re missing, the tendons have nowhere to attach. As a result, they’re pulling from the inside of her ankle.
There’s still shrapnel from the bomb inside her leg. Sometimes, she says, a small piece of metal or BB will lodge out of her calf while she’s sleeping.
Dr. McGarvey’s hope is that one more surgery will stabilize her foot and help it stay flat on the ground. Still, there’s no guarantee it will mitigate the pain.
Obviously Dr. McGarvey doesn’t want to admit defeat, and understandably so. Doctors are expected to have all the answers and our health system rewards them to keep looking if at first treatment doesn’t succeed. Gregory doesn’t want to try, try again. She wants to go with her instincts and start making her own decisions.
As hard as “giving up” may be for her whole care team, they should let her make her own choices and help her adapt to life after amputation, if that’s what she decides is best for her.
