Medical Nightmares

When I asked my Canadian friend to guess how much the bill came to for my daughter’s 3-night stay at a major Boston hospital, he aimed high. He’s no dummy. He knows how expensive the U.S. health care system is. “$2000?” he said.

“That’s funny,” I replied. “Try again.”

“$5000?” he guessed incredulously. I couldn’t make him keep guessing. It would have been boring to wait until he got to the correct amount, which was $71,000.

Our family is lucky to have good health insurance and a decent income, so my daughter’s injury did not cause financial ruin as health episodes do for many families in the U.S. (In 2014, the financial advice company, NerdWallet, found that medical bills were the leading cause of personal bankruptcy in the U.S.)

Even good insurance, though, doesn’t cover you for certain irrationalities in the U.S. health care system. Before my daughter went to the Boston hospital, she had made three trips – twice in an ambulance and once in a taxi – to the emergency room of her local hospital in western Massachusetts. The first time, she was experiencing the “worst headache of her life.” They sent her back to school and told her to take Advil and see her doctor at the university health clinic. A couple days later, she experienced left-side body numbness and took a taxi to the ER. This time they sent her home with instructions to see a neurologist, and they gave her the phone numbers of two that had practices nearby. One of these neurologists had a permanent “out-to-lunch” message on the machine. At least that is what the message said every time I called. The other sent you straight into a voice mail labyrinth, the upshot of which was that if you were a new patient you needed to fax about 10 different documents to them and then they would call you to make an appointment.

How is this health care system supposed to be effective or even navigable for the ordinary person?

The third time she went to the ER, she called 911 because the left side of her body was weak. The first responder was a state trooper who came into her tiny dorm room and promptly asked to search her boyfriend’s backpack. “I smelled pot in the elevator,” he said, irrelevantly. He then forced her boyfriend out of the room, removing her one comfort at the time.

You’re not supposed to have to fend off aggressive armed police in your dorm room when you are having a medical emergency, but through a combination of remaining calm and being white, my daughter and her boyfriend tolerated/survived the state trooper until the EMTs arrived. I spoke with the EMTs on the phone: “Please don’t take her back to the same hospital. They have released her twice without doing any imaging. Please take her to another hospital more equipped to take care of her.”

“Sorry,” they said. “She is showing stroke symptoms. We are required by law to take her to the closest hospital.”

At the hospital, she was shaken up. The nurses and doctors determined she was not having a stroke and told her to sit and wait. When the weird seizure symptoms returned, she got up to tell them. “Do you suffer from anxiety?” they asked. “Try not to be so emotional.”

On the advice of her primary care physician, my partner and I sped out to western Massachusetts, collected her from the ER where they were about to release her again, and we took her to a major Boston hospital, where they diagnosed her with a bleed on her brain and admitted her to the neuro ICU.

About a week after she was released, my partner fell off the truck at work and fractured his skull, and we were right back in the neuro ICU of the same hospital. This one was a Worker’s Comp. claim, so all his expenses would be covered, but under Massachusetts law, he was only paid at 60% of his salary while he was out of work. My workplace has a generous benefits package by most standards, but I had to take vacation time to take care of him. Once that was up, I could take unpaid leave (under the Family Medical Leave Act).

To people in other developed countries, this probably sounds like insanity, but in the U.S., this puts our family at the top of the heap in terms of the social safety net. Many workers have fewer protections than we do. One quarter of the U.S. workforce gets no paid vacation time. Almost 40% of private sector workers get no paid sick time. And only 41% are eligible for leave under the FMLA.

So, here we are – one family member just out of the hospital and recovering at home, and another family member facing extreme pain and a several-month recovery. You might think, with our professional, salaried jobs, our good health insurance, and our benefits, we’d be able to focus on healing. But, no. Everything was a fight.

They released my partner from the hospital after two days even though his pain was still very intense. “Call first thing tomorrow morning,” they said, “and get an appointment at the pain clinic.”

Sounds like a great idea, but there was literally no appointment at the pain clinic for 6 weeks. I am a trained organizer with a big mouth and a middle-class white person’s sense of entitlement, and I spent hours on the phone working it from every angle, and even I could not find a single appointment at a pain clinic anywhere in the Boston metropolitan area. So when his pain was intolerable, we went back to the E.R., which we had to do two more times.

Each time, I said, “Look, it’s not just his head that hurts. He also wrenched his back during the fall. So he’s in two kinds of very severe pain.” Every single time I raised this concern, they said, “We’re only focused on his head right now.”

Okay, I get it. His head ranked higher on the concern-meter than a soft-tissue back injury, but pain is pain, and when you’re in it times two, and you’re in a hospital for chrissakes, with medical professionals in every direction, why not give him some relief for the second-ranked injury as well?

Why? Well, because it’s just too much to ask. The specialist in charge of his care was a neuro-surgeon, who once, and I kid you not, said it for me real slow: “N-e-u-r-o,” he enunciated carefully. “That means the b-r-a-i-n.”

“Yes,” I wanted to say back, “And this is a p-e-r-s-o-n.”

But the U.S. health care system is not really set up to deal with p-e-r-s-o-n-s. It’s designed to turn a profit. As more and more care is referred to specialists and as lucrative procedures take precedence over appointments for patients with chronic conditions, doctors and hospitals make enormous profits while patients suffer from lack of care.

And our social safety net is not really meant to keep us safe. It is designed to keep us disciplined and on edge – grateful for the crumbs and relieved not to be bankrupt.

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