“America's health care system is neither healthy, caring, nor a system.” ― Walter Cronkite
This week, I had to take my dog in for surgery. We got in quickly, the veterinarian laid out all the options, the risks, the benefits and, at the end, an estimated cost.
I’m not going to say the entire process was a dream. Apparently even at a veterinary hospital there are significant communication issues in health care.
But it was certainly much simpler than my interactions with any human health care provider.
As I drove back home through amber waves of grain and in the shadow of purple mountains’ majesty, I wondered if that vet hospital experience is what American health care could be in a world without the morass of health insurance we have today.
Don’t get me wrong. Human health care and animal health care will always be different for one fundamental reason: there is a limit to how much even the most devoted owners will spend on their pets.
There is no such limit when it comes to your personal health or that of a loved one.
“How much is your life worth? …Well, how much you do you have? All of that. That’s how much it will cost.”
When you are a medical mama, health insurance rules run your life. So for this issue I decided to get into the back room to see how the sausage is made with one woman who deals with insurance rules all day long.
We will call her Anna because she is nervous that her employer — Oregon Health & Science University, a major teaching hospital in Portland, Oregon — would retaliate against her for speaking out about the inefficiencies in her job and the work-arounds she has to perform to serve patients.
“We’re as frustrated with this system as parents are,” Anna says. “People just don’t understand — I didn’t understand the system until I was in it, and even then it took years to understand it.”
And now, COVID-19 cases are rising again, threatening to flood a system that has been operating on the slimmest of margins for years.
“We’ve never been as overwhelmed as we are right now,” Anna says.
Although she works as a specialist in Patient Access Services (PAS), nobody knows what that means so Anna tells people that she is a “scheduler.” Making appointments is only about 5 percent of her job. The majority of it is navigating patients — largely unbeknownst to them — through health insurance rules.
Insurance companies have their own language that has taken her years to master. Even to this day she discovers new “dialects” — different phrases or terminology — in each medical office or insurance company.
The health insurance language consists almost entirely of codes. There are International Classification of Diseases codes, or ICD-10 codes, and Current Procedural Terminology codes, or CPT codes. The first one communicates the complaint or diagnosis; the second one communicates what the provider intends to do about it.
At a major hospital like OHSU, there can be patients on hundreds of different insurance policies, each one with their own idiosyncratic processes.
“The problem is, I can’t tell someone who has Oregon Health Plan and someone who has Blue Cross Blue Shield the same thing because they are different,” Anna says. “If all the rules were the same, then I could get my job done a lot easier and faster.”
She says universal healthcare or a single-payer plan could be the answer to that problem, but it would also depend on how a system like that is structured. She can imagine how funneling government money through Coordinated Care Organizations (CCOs) would still lead to these sorts of complications.
Anna says even after four years in this job she is still discovering new puzzles every week. But her favorite parts of her job are when she actually gets something accomplished for patients — which is entirely too rare.
“It’s so great to get things to work sometimes,” she says. During January to March of this year, she answered phones for a COVID vaccine clinic and enjoyed being able to provide people with clear answers to many of their questions.
“People were just so happy to get real information.”
6 tips for parents navigating healthcare:
1. Learn the lingo. A “referral” is like a hall pass that gets you from one doctor to another. You can ask for a referral to a specific doctor (or other provider) — you don’t have to wait for them to think to do it. A “prior authorization” is like a promissory note from the insurance company agreeing to pay the new provider. That process involves sending chart notes and talking to the insurance company’s panel of doctors or nurses and sometimes appeals. The whole process can take up to six weeks. You usually need both a referral and a prior authorization to get care from someone new or to get a new procedure done.
2. Words matter. The way you ask questions can open doors that are otherwise closed. You might not be able to get a prescription “refill” but if you ask for a “bridge,” that can get you the couple weeks of medication you need until your insurance kicks in or you can get in for an appointment.
3. Go to the annual check-ups. Industry standards require that doctors see their patients at least once a year to prescribe them meds, make referrals or sign off on paperwork. You don’t want to have an emergency arise and need to wait weeks for an appointment.
4. Try to find co-conspirators on the inside. Anna says she responds better to people who try to commiserate with her about the broken system she’s in, rather than blame her for it. With those callers, even if she can’t help them right away, sometimes she finds herself thinking of a work-around a few hours later and calls them back.
5. Get copies of all your health records printed when you move out of town or change hospitals. You have the right to request them — but it could take a few weeks. Still, it’s better to have copies at the ready to hand over to a new provider. And some places (like Anna’s) still don’t take digital copies.
6. According to Anna, schools are constantly losing paperwork and forms and it causes a lot of problems and delays. Once you get a letter or a doctor’s signature, take a picture and make sure your doctor keeps a copy.
Medical Motherhood’s news roundup
• From The Atlantic: THE TIME TAX: Why is so much American bureaucracy left to average citizens?
In my decade-plus of social-policy reporting, I have mostly understood these stories as facts of life. Government programs exist. People have to navigate those programs. That is how it goes. But at some point, I started thinking about these kinds of administrative burdens as the “time tax”—a levy of paperwork, aggravation, and mental effort imposed on citizens in exchange for benefits that putatively exist to help them. This time tax is a public-policy cancer, mediating every American’s relationship with the government and wasting countless precious hours of people’s time.
"There's terrible shame in this," says Helen Bonnick, a former social worker who has written a book about child-to-parent violence.
"If you're a parent, your role is to bring up your child to be a responsible member of society and a loving, caring, human being, and if that's all gone wrong, people feel that they've failed. They really don't want to talk about it. And because no-one talks about it you think perhaps you're the only person that's experiencing it."
Like domestic abuse and intimate partner violence, child-to-parent violence affects people from all walks of life, rich and poor, and it would be wrong to assume that it only occurs when children have been in care. In fact, Michelle John, from child-to-parent violence charity Parental Education Growth Support says her organisation helps more birth families than adoptive ones.
• From the University of Michigan: “Study shows when people with cerebral palsy are most likely to break bones”
Researchers at Michigan Medicine found a subset of middle-aged men with cerebral palsy are up to 5.6 times more likely to suffer fractures than men without the disorder.
“We are not really sure why this happens,” said Edward A. Hurvitz, M.D., professor and chair of the Michigan Medicine Department of Physical Therapy and Rehabilitation. “It may be related to structural differences that occur during adolescent growth, or to greater bone mineral loss at earlier age for people with cerebral palsy compared to peers.”
Medical Motherhood is a weekly subscriber-funded newsletter for people raising disabled children.
Visit the Medical Motherhood merchandise store
Buy a gift subscription