It all started innocuously enough in the week leading up to Christmas in 2019 with a runny nose, a cough, and some fussiness. All pretty standard for our one-year-old daughter, who spends time with other kids at daycare sharing germs more readily than toys. Over the next few days, however, the cough got worse and the fussiness increased. We were still thinking it was just a cold until the lethargy hit. She wasn’t eating or drinking well, she had spiked a fever that wouldn’t level out, and seeing our normally active child—a girl who wasn’t even still when she slept—lying down listlessly mid-play started to raise alarm bells. It became increasingly clear that something more serious was going on. It was the weekend, of course, so our normal primary care practice was closed. We decided to try and get her evaluated at urgent care, and—after a few hours of being turned down by multiple locations that did not treat infants—finally found one a few towns away that would see her.
She was poked, prodded, and X-rayed over the course of two hours. The diagnosis was clear: pneumonia, alongside severe dehydration. She had lost over a pound since her one-year physical the week before. We were shocked at how quickly this had manifested. The urgent care pediatrician discussed treatment options: we could try to treat her at home by managing her high fever with over-the-counter medications, working on her hydration with Pedialyte, and treating her with oral antibiotics. But we recognized a note of concern in her voice, especially after the nurse admitted that she had been unable to get a dose of Tylenol into our resistant daughter when we arrived. My husband asked the physician what she would do if it was her child, and she hesitated before she said, “If it was my child, and if I had good insurance, I would take her to the Children’s ER right now to be admitted.”
So that’s what we did. The urgent care team called ahead and we brought our daughter straight to Boston Children’s Hospital, where an amazing staff of nurses, medical assistants, physicians, and volunteers made her recovery, and our 48-hour inpatient stay, as painless as possible. It was a whirlwind, with bags of IV fluid to rehydrate her, rotating teams of three nurses to cajole her into taking her oral medications, and lots of reassurance to two worried parents as she recovered. It took almost the entire two days for her fever to come under control, and while she was still barely eating, her weight loss had plateaued, and she was clearly improving.
Between the blinking lights, the beeping monitors, the anxiety, the late-night nursing rounds, and sharing a hospital crib with my fidgety child (and her IV lines), I didn’t sleep much those two days. But I did think a lot about the physician’s advice and the choices we were offered when we asked how to best take care of our daughter.
“If I had good insurance…”
We are lucky; we have good insurance, we have privilege. We have both financial and social safety nets that mean we didn’t have to think twice before heading to the emergency room. Even with our “good insurance,” we paid well over $1,000 out of pocket, not to mention the cost of pricey hospital parking and meals. Also, while this was a scary experience for us—exacerbated by the fact that toddlers are neither particularly compliant patients nor are they good at accurately detailing their symptoms—we probably would have managed just fine at home.
But what about parents without good insurance whose child has hit their head, whose asthma is getting worse, whose fever continues to climb? Our health care system forces us as individuals, as parents, and as family members to make impossible decisions, and often by necessity personal finances become too large a factor in the calculus. This also becomes a variable for clinicians when providing treatment and recommending treatment options.
Taking care of yourself and your family shouldn’t be a question of your bank account, but in the United States, this is too often the reality. Research tells us over and over again how health care costs in the U.S. are inversely proportionate to patient outcomes. A recent Commonwealth Fund report entitled U.S. Health Care from a Global Perspective details how health care spending, both per person and as a share of GDP, continues to be far higher in the United States than in other high-income countries. Meanwhile, people in the United States experience the worst health outcomes overall of any high-income nation, with Americans more likely to die younger and from avoidable causes than residents of peer countries.
Health care is a fundamental human right, but the U.S. health care system is broken. We are the only country among our peers without universal health coverage (UHC). Universal health coverage—or a single payer system—is defined by the World Health Organization as all people having “access to the full range of quality health services they need, when and where they need them, without financial hardship.” Grounded in equity, and with primary care, public health, and community health as cornerstones, UHC would mean that there are preventative systems in place that help keep people out of urgent cares and emergency rooms. It would also mean that no provider checks insurance coverage before providing care, and that no parent is forced to make choices between the best medical care and other expenses. Incremental tweaks of policy and small changes to payment regulations are not enough to make U.S. health care work for the whole population. Radical, system-wide transformation is needed to rebuild a broken system in order to center the care of patients and not the wallets of for-profit insurers. The Affordable Care Act was a huge step in the right direction, but so much more work is needed to ensure that patients and their families are making decisions based on medical necessity and not on the specter of medical debt.
In a few days, our daughter was 100 percent better, returning to full speed and strength much sooner than the rest of us. The only thing she remembers about her hospital stay is the plush wolf toy she took home from the volunteer-led holiday toy drive at the hospital.
I, on the other hand, will remember how scared I was when she was sick, how grateful I was to have reliable access to a care team who advised us on the best treatment options, and how relieved I was to have ”good insurance.”
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Erin Farren is the Managing Director at the Center for Primary Care. In her role, Erin works closely with Center faculty on education initiatives, including increasing student and resident engagement with the Center, working to connect the Center’s scholars with mentors and research opportunities, and evaluating existing projects. |
**Feature photo obtained with a standard license on Shutterstock.
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