What happens if a doctor refuses to treat you? That happened to a friend, a wheelchair user with osteogenesis imperfecta (or brittle bone disease). My friend, like others with OI, has had countless bone fractures. Recently, she broke her arm as she was reaching for a pencil while working with a group of young students at her school.
Fractured bones mean intense pain and a trip to the emergency room, which can be nightmarish for people with disabilities even if what sent you there has nothing to do with your disability. But for my friend, a fracture has everything to do with OI.
She went through the regular ER routine: waiting, X-rays, waiting some more, consulting with the ER doctor who told her he would contact the orthopedic specialist on call. And that’s where things started to fall apart.
When the bone specialist looked at the X-ray of her arm, he saw evidence of previous surgery, a metal plate, other fracture lines. In other words, not your average arm with an average fracture. So, what was his medical advice? There was none.
He refused to see her, instead telling the ER doctor that “the arm belonged to the surgeon who operated on it. Tell her to go back to him.”
Let’s review this scene: Woman in wheelchair with painful broken arm goes to the ER seeking medical help. The specialist in bone fractures, obviously feeling out of his element when viewing her X-ray, refuses to give her the courtesy of a face to face conversation, much less a professional consultation. So she’s sent home with her arm in a sling to cope on her own.
It takes close to two weeks to get an appointment to see the original surgeon (slowed by the usual back and forth of medical referral paperwork). During those 14 or so days, she finds it difficult to transfer, get showered and dressed, prepare meals — all those daily functions that are challenging for wheelchair users on our good days, but which are practically impossible when an arm is immobilized.
During those two weeks, the arm is still broken and she’s in pain whenever she moves. She’s not able to drive, and must rely on friends to lift her into their cars to get to work and necessary appointments.
My friend tells me that other doctors have refused to take her on as a patient. How can that be ethical? For years we’ve been battling inaccessible medical buildings, equipment that we can neither get on nor off (examination tables, X-ray machines, even the basic gurney) and hospital rest rooms with narrow doors, no grab bars, and low toilets. Such obstacles have taken a toll.
Despite the ADA, “studies in recent years have revealed that disabled patients tend not only to be in poorer health, but also to receive inadequate preventive care and to experience worse outcomes,” reported the New York Times “Well” blog.
Studies on why doctors refuse to treat patients with disabilities mostly focus on the obvious: inaccessible equipment and staff unable or unwilling to lift patients or help them transfer out of their wheelchairs. There’s little focus on physicians who won’t treat patients with, shall we say, complicated medical histories.
Refusing a patient because an office is inaccessible is illegal. Shouldn’t refusing a patient because of their disability be just as illegal? It’s certainly as ethically and morally wrong as it gets.