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Fractured Care

A Revealing Look Behind the Hospital Curtain

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Last Updated: 11/07/2016 10:00 am
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True integration in health care, she adds, will use technology to gather more meaningful data about our lifestyles and environments—our diets, sleep habits, location, and other factors that play into our biggest health crises, including diabetes, heart disease, and cancer. "If we really want to improve health, not just the delivery of more health care, then we have to start thinking about integrated systems that go far beyond the clinical," says Maguire. "We need to figure out how to connect clinical data with certain kinds of lifestyle data that will actually improve our health outcome." Of course, she's talking about prevention—something that Western medicine has never been very good at, with its stronger focus on acute care in critical situations. It turns out I will have some experience with that in the coming days.

Wading Through a Medical Mystery

Discharged from the hospital, I drive off into a late-summer sunset with my boyfriend at the wheel. (He is part of an ace support team that includes my parents and former partner, who has taken over the child care of our two girls while I'm ill.) But the sunset might as well be a painted mural; the happy ending is not for real. Soon I'm reeling again with weakness and fever. I end up back in the ER the next night, this time trying out another hospital. After a few cursory tests the ER doctor tells me to go home; my fever is gone and there's not much else he can do for me. Surprised that I'm not admitted, my parents insist that I stay with them—a mandate that perhaps saves my life. My father, a retired surgeon, tries to keep me hydrated, and during one of these efforts I gasp in pain as I attempt to drink from a straw. "Does it hurt when you tuck your chin?" he asks. It turns out that pain in this place is a sign of meningitis. Bingo.

I don't remember what happens next. My fever has spiked to 104.7 degrees and I'm delirious. I remember nothing about the drive to the hospital. I remember nothing about the packed waiting room at midnight, and my father telling the receptionist he thinks I'm going to have a seizure—a fib that gets me seen ahead of the crowd. I remember nothing about giggling at my inability to find words as white-coated workers ask me questions that my parents and boyfriend have to answer because I've become a babbling idiot. I remember nothing about the ER doctor's mortified, ashen face as he apologizes for sending me home the previous night. And I remember nothing about the spinal tap that confirms my meningitis.

I am admitted—I remember that—because I return to normal cognition as I receive targeted antibiotics from nurses wearing face masks (it will be determined later that I am not contagious). On the wall of my isolation room, a poster reads "We are going to give you excellent care!" And when you're in a life-threatening situation the care is damn good; it's when you're stable that things start to slide. Through it all I am relieved to have an advocate by my side—my own MD father—to make sure it stays that way.

Power to the Patient

Not everyone is lucky to have a medically trained parent on hand, as I did, to vet the system. The majority of us feel lost at sea in a health care setting. To be a patient, by default, is to be a passive nonparticipant whose job is to receive care; it is inherently disempowering. That's where the idea of a patient advocate comes in handy—someone to help navigate waters that can be confusing and intimidating, whether it's questions about your diagnosis and treatment options or insurance and billing. Different advocates specialize in different areas, and some bring expertise in certain medical conditions. Many hospitals have patient advocates on staff, though ideally you'll want an adviser who is not already part of the system.

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