- Annie Internicola
This writer has always craved an opportunity to travel to the front lines of timely, important issues and report back an investigative piece filled with nitty-gritty details. Fourteen days in the hospital was not exactly what I had in mind, but that's what life handed me this past September. As a patient, I experienced the many indignities of hospital life: lack of privacy, incessant noise, dubious food, disrupted sleep, and endless probings and punctures that left purple trails along my arms. I also met my share of smart, well-meaning doctors, and nurses and aides with a flair for bedside compassion. I was getting an inside look at a health-care system knee-deep in flux and reform that is striving hard these days to be "patient-centered" and "value-based" (two industry buzzwords), but that is struggling to shed its traditional, one-size-fits-all ways.
My story includes two hospitals, four infectious disease doctors, seven hospitalists, countless bags of antibiotics, and one missed diagnosis that could have resulted in death or brain damage before I was treated for what I had: listeria meningitis. It begins with a 105.7-degree fever followed by a mad dash to the ER and a battery of tests: chest X-ray, blood culture, CT scan of the head, ultrasound of the liver.
After I'm admitted time slows down, measured in the drip of IV fluids and the comings and goings of nursing carts. Seeing an actual MD for more than five minutes is rare; it seems that every day a different hospitalist is on staff to manage the care of every patient in my wing, and he or she spends much of the time parked at a computer behind the nursing station. Relatively new in health care, a hospitalist is a physician employed by the hospital to take the place of your family doctor—emphasizing the fact that to be a patient these days is to put yourself in the hands of an institution. Not a person, per se, though the personnel are many—all of them straining to meet the needs of patients and Big Data in one breath.
My first week in the hospital will be a lost week. The providers are perhaps thrown off by a gut condition I have that could be part of the problem. No one will notice that my searing headaches, repeated requests for Tylenol, and light sensitivity (I am constantly killing the overheads) are signs of bacterial meningitis—inflammation of the brain and spinal cord membranes—a condition I never suspect.
First Aid for a Fragmented System
As the days pass, both the patient and the health writer in me grow amazed at the fragmentation of care and seeming lack of communication among caregivers. There is the hospitalist who says that my blood cultures have come back positive for a type of corynebacterium he's never seen before ("These bacteria are usually round and yellow or long and blue—but yours are round and blue!"). There is the infectious disease doctor who orders me a new course of antibiotics through Labor Day weekend, when a skeleton staff leaves me and my fellow patients feeling adrift. There is the second infectious disease MD who reverses the story, announcing that the mystery bacterium is just a harmless skin contaminant. I am sent home after a week to my great relief, eager to flee, but with the nagging thought that I have not been treated for anything.
Why such disjointed care in an era when the digitization of medicine and the adoption of electronic health records (EHRs) should be connecting healthcare professionals better than before? For one thing, the introduction of IT to the industry is still in its infancy, says Rachel Maguire, research director at the Institute for the Future, a think tank specializing in long-term forecasting. "[Digital] is a relatively new form of communication for health care, which has largely depended on paper, faxes, phone calls, and traditional communication styles a lot longer than most every other industry," she says, noting that the fax machine, that dinosaur of the 1980s, remains a fixture in physicians' offices. "And just because we have digital technology doesn't mean we have the cultural practices to actually utilize it in a meaningful way."
With HIPAA laws protecting patients' privacy and limiting the free exchange of information among health care providers, the EHR could become a place for physicians to safely and permissibly share ideas; instead, caregivers use it to report findings and record data, like a high-tech ledger. And while this form of IT is dragging health care into the 21st century, it also comes with a price. "One of the biggest criticisms about the EHR is that now you have some providers who never look at the patient; they just look at the computer screen and ask a bunch of predetermined questions," says Maguire. "It's become an interaction that's about data collection."
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.
"It can be scary to be in a health crisis and have things pushed on you, to have to make decisions quickly," says Michelle Acciavatti, a patient advocacy educator and end-of-life specialist based in Vermont who works with people locally as well as remotely. "A lot of us have been brought up to implicitly trust everything a doctor says. We have the right to speak up and ask questions." Finding a patient advocate isn't always easy (a Google search in my area turned up surprisingly little). That's why Acciavatti puts the focus on educating and empowering people to act as their own advocate. It starts with patient literacy—being able to understand your medical situation so you can ask the right questions. "Then we can come up with strategies for how to make sure you're exercising your rights and feel safe and comfortable doing so. That translates into being engaged in your health-care decisions so you can make them from a place of understanding and confidence."
Most people never read their patient's bill of rights, the pamphlet presented by hospital staff to the sick upon arrival. Although I can't say I read mine, I did know enough to exercise my rights—such as declining multiple finger pricks to check my blood sugar when I've never had a history of diabetes. "It's okay to contradict your doctors and nurses, even though it might not always be met with friendliness or compassion," says Acciavatti, who recommends tapping friends or family as stand-in advocates. "You can have somebody come into the hospital and read your bill of rights with you, so that when you do speak up there is someone by your side." Nor do we have to stick with a caregiver who doesn't jibe with us. When I met my third infectious disease doctor, he told me anecdotes about two young women with listeria meningitis: one who died suddenly of a brain abscess, and another who is still in speech therapy five years after treatment. The stories unsettled me so deeply that I had to pick another MD to follow my case to completion and my body back to health.
True health care reform—personalized to the patient, high-tech yet human—can't come fast enough. When we speak up for what we need, the system will have no choice but to deliver. Never mind investigative journalism: What we really need is a manifesto. The revolution starts with us.