Tapati (tapati) wrote,

The Work of Being A Patient

I've often thought of the effort I put into coordinating my medical care as being like a job. I didn't really think about it as unpaid labor that keeps the medical system going until I read this article: Unpaid, stressed, and confused: patients are the health care system's free labor.

I want this to go viral because while I'm a fairly well educated person and more familiar than average with medical terminology, I have to imagine that other patients who have to communicate the diagnosis and comments of specialist A to specialists B, C and maybe D, E, + F have a harder time. I can see how things fall through the cracks and impact patient care and outcomes when exhausted patients in a lot of pain must try to call pharmacists, specialists and several docs or other providers and miscommunication interferes--or they get worn out and give up on getting a medication or procedure or therapy they needed. Sometimes I get tired and take a few months where I do nothing but refill prescriptions and don't bother with follow up appointments or scheduling PT or tests or anything but the barest maintenance. I know I'm not alone. I've often wished I had a secretary to track things and make calls. Sure, if you're young and healthy this isn't an issue that concerns you. For all of your chronically ill (or even acutely ill) friends, family and acquaintances, this is a huge issue. Please pass it on! We need to be aware of it before the people in the health care system will even begin to think of solutions.


I write a lot about health care for my job here at Vox, and have spent the past seven years covering and explaining the American health care system. But there was something I didn't understand about American health care until this experience.

It is the considerable burden our fragmented system puts on patients to coordinate their own care.

I'm not talking about the work of managing one's health, the work that diabetics do to monitor their blood sugar or the healthy eating choices a doctor might recommend for an overweight patient. This can be a significant burden in its own right.

What I didn't understand was the burden patients face in managing the health care system: a massive web of doctors, insurers, pharmacies, and other siloed actors that seem intent on not talking with one another. That unenviable task gets left to the patient, the secret glue that holds the system together.

For me, this feels like a part-time job where the pay is lousy, the hours inconvenient, and the stakes incredibly high. It's up to me to ferry medical records between different providers, to track down a pharmacy that can fill my prescription, and to talk to my insurance when a treatment gets denied to find out why.

I'm not alone.

"Every three months, I just know I'm going to lose a few days of my life," says Aaron Carroll. He's a pediatrician at Indiana University who directs the medical school's Center for Health Policy and Professionalism Research, and who also writes about health care at the New York Times's Upshot.

..."Basically I call the pharmacy, and tell them I'm out of medication," he says. "And sometimes they'll call my doctor for a prescription, and sometimes they won't. So I call the doctor's office to say, 'Hey, I'm out of meds, either the pharmacy will call you or you need to call them.'"

Carroll told me he almost always runs out of his medication early and ends up rationing pills because something goes wrong — a lab test goes missing, a prescription doesn't get transferred. And he's a physician. What about the rest of us?
Tags: chronic illness, doctor, health care, medications

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