How People Die in America

Last week I published a long story about my near-fatal bacterial infection six months ago, and the material benefits that kept me alive. Since the piece ran I have been completely overwhelmed by reader responses.

Everyone, it seems, knows someone who has been financially ruined—or, in a roundabout way, killed—by the opaque mechanizations of our privatized health care system.

I survived, and I have a platform. But as one reader put it, “the people who die from having no insurance are not around to tell their stories.”

Our politicians are fond of holding the line that no American dies for lack of access. Doctors and hospitals are bound by oath, the thinking goes, to do everything they can to save a life. But that logic doesn’t account for the broader significance of the cycle of debt, or the way generations of families can be ruined by a single medical crisis. It glosses over the insane level of trust we are forced to put in the medical industry—the providers, the doctors, the insurance agents—when we have an accident or suddenly fall ill.

Since I published my own account of illness, I’ve seen lots of references to the now-deceased self-employed New York carpenter who won the lottery, used his newfound wealth to go to the doctor for the first time in decades, and found he had cancer in his brain and lungs. Someone sent me a link to this story about Susan Moore, a woman in Kentucky who elected to stop the dialysis she needed to stay alive because she couldn’t afford to travel to the medical center three times a day.

I tweeted a handful of the comments on my story, but I wanted to post a couple more; these are the kinds of testimonies that can get lost in the glut of statistics about healthcare in this country.

On the excruciating pain families endure when they inherit a deceased loved one’s debt:

Next week, I’ll be attending the funeral of a friend who died after a brief but terrible battle with cancer. She’d been misdiagnosed for a year before getting the bad news last August. Her decline was precipitous and took an enormous toll on her husband and young daughter.

Unfortunately, the family’s health insurance was basically garbage, so her botched care will cost them $250,000. She refused some treatments out of fear for the cost, but the bastards still managed to gouge her on her way out.

On delaying medical care out of concern for the cost:

I lost a friend to cancer who knew something was wrong but had to wait a little over a month to see a doctor until a college semester rolled around so he could get on his mom’s healthcare. I suspect the healthcare provider didn’t move fast enough as well.

On the clear, lived difference between care for the insured and the uninsured:

My husband and I lived something similar. The day he got hit by a truck (literally), he had no health insurance. My brilliant mother figured out a loophole in my employer plan to get him added to my policy literally the next day. It took ten days to get insurance cards mailed, four of which he spent in ICU, and I remember him sweating in the hospital bed and asking if he had an infection. The ICU nurse said, “No, honey, that’s pain.” Anyway, those ten days until we got insurance cards were as close to through-the-looking-glass bizarre I can remember in my life. It didn’t matter that I had stamped, accepted insurance applications, or that my employer and the health plan would confirm he had coverage; on the day he was moved from ICU to a recovery room, a caseworker handed me a list of nursing homes and told me to start calling because he needed to be gone in two days. The right side of his body was hamburger and he couldn’t get out of bed, but I would have to transport this 190 pound man myself.

But when the insurance cards showed up, everything suddenly was technicolor. Yes, he suddenly was eligible for the inpatient rehab that would teach him to walk again. And the three reconstructive surgeries to put the right side of his body back together. And the subsequent PT and home nursing visits. And a second opinion on whether to revise the first failed hip surgery so he wouldn’t be at future risk for joint degeneration and so someday he could ride his bike again. It’s unnatural to feel that mixture of fury and gratitude at the same time, and I still do whenever I remember it. It probably causes cancer. I guess thankfully I have insurance for whenever that happens.

On the devastating family cycles caused by serious illness and medical bills:

My mother died at the ripe old age of 32 because insurance kicked her off due to a pre-existing condition in the late 80s (so she died of cancer, and since it was Texas, left my family with hundreds of thousands of dollars in debt, wrecking our lives until my father died of alcoholism). So, my brother and I grew up without a mother (and really without a father due to the alcoholism). Accordingly, we’ve both had drug and mental health problems and have cost the system quite a lot, when much emotional anguish could’ve been avoided had we been given the opportunity to grow up with a mother. For instance, I now have a disability due to all the piled-up trauma over the years (but am not eligible for chicken scratch SSI, because ‘Murica).

I just want to repeat that. Poor-to-none medical coverage doesn’t just affect those in the now, but also in future generations, when kids are forced to grow up without parents or siblings that should be there. This type of medical situation is literally catastrophic for generations.

On the reflexive terror of being thrust into a for-profit health care industry:

Some years ago, my friend and I helped rescue a young woman who had been in a boating accident in Florida’s Gulf Coast. Apparently she slipped and fell, had her head cracked open and bleeding profusely. We helped her to the shore and told her we were calling an ambulance and help was on the way. Bleeding uncontrollably from the goddamn crack in her head, she begged us not to. She said she didn’t have insurance and the ambulance bill would bankrupt her.

She was slurring her words, so we didn’t listen to her in order to make sure she didn’t just die there. To this day, I have trouble getting over the horrendousness of that poor woman’s situation: having to consider your finances while facing a life or death situation.

On what actually goes on behind the curtain:

It’s true about you being in a class of people who can survive. I used to work For Kaiser Permenente as a presentation specialist for the top execs. I prepared slideshows and stats on how they could drop some classes of people or strategically change their plans to capture some class of more profitable people from other insurance companies. At the level I was working, the C level meetings and presentations were all about how to classify patients into categories and then strategically avoid selling insurance to expensive population groups without violating any laws.

On watching crisis unfold, from the other side of the gurney:

As an ER-Trauma nurse in the USA, I can weigh in on how to survive our healthcare system:

Just be rich. It’s that simple. Really! Just have a couple extra million to dispense at-will.

On feeling helpless when it comes to coughing up cash for care:

Hospitals use threats to get family members to make payments and commitments of their own. People out things on their credit cards and withdraw savings. Some even take out mortgages to meet payment demands from hospital office leeches. None of that is protected as “medical” debt.

When my father was stuck in an ICU for 6 months suffering from an undiagnosed ailment – that later turned out to be chronic leukemia, the hospital would threaten to release him home to “hospice”. Not having a diagnosis neither he nor us was ready to give up. But since he had no insurance, the hospital demanded at least “token” payments. My grandmother dutifully paid them $20,000 every few weeks from her own retirement savings – money that was supposed to be her children’s inheritance. Money thatbwas the result the result of her husband’s 70 years of hard work to provide for his family’s future. $200,000 – more than anyone in my family has – gone in a few months.

He died anyway because they neber thought to run any tests for leukemia until he was transferred to anlong term intensive care in another city. By the time it was diagnosed diagnosed properly the untreated cancer had been neglected too long and he was gone within months.

No they couldn’t take my grandmother’s savings or the entire family inheritance directly. But through threats of no care, they take it from you.

Of course, it’s possible that people like us have simply failed to act like adults and need to take responsibility for our choices. But I doubt it.