Several years ago, Congressman Raul Labrador (R- Idaho) proclaimed that “nobody dies because they don’t have access to health care.” * My experience has been different.
When I heard his words I thought of a sweet young woman whose body and community both turned against her. Somehow, I was supposed to be her last hope.
Fifteen years before I met her, I stood at my graduation wondering what lay ahead. On a hot June day in 1987, together with a hundred of my medical school classmates, draped in caps, gowns and sweat, we took an oath. Looking back it’s a bit ironic that the ceremony to recognize my professional coming of age was marked by dressing up in centuries old Catholic church regalia and reciting ancient Greek words. The Hippocratic words, an oath to Apollo, Asclepius and company were lost even as they passed my lips, but the gist seemed clear. We trained to help, teach, and heal, to treat our patients with respect and dignity no matter their circumstances.
While medical school and my surgical residency taught me about complex body systems and how they interact, it left the dizzying complexity of the U.S. health system to the school of hard knocks. “You’ll figure it out,” said one of my professors. “Sink or swim.”
Medical students and residents train in the insulated bubbles of universities or “indigent” hospitals. In those years my imagination conjured up an umbrella of U.S. health care that was blind to the patient’s ability to pay. Reality tells us that in every life there will come a passing rain shower of illness or injury and sometimes a devastating storm. In the quarter of a century since I left my training behind, I have found that U.S. health coverage isn’t really an umbrella but more of a hodgepodge quilt. Much of it is compassionate honest care, but there are the ugly swatches of greedy cash only “boutiques” and huge threadbare holes and gaps defined by a “good luck out there” philosophy. We tell ourselves that we have the best healthcare system in the world but there is nothing systematic about it.
The wildly diverse and competing incentives of hospital dollars, doctor dollars and all the ancillary industries that come to feed at the healthcare trough have whipsawed me through my career. I trained to be a doctor but somehow found myself in meetings with a marketing agency to discuss my “service line product,” “market share analysis” and “robust practice profiles.” All euphemisms for how to avoid the uninsured patient.
For many years I worked at a publicly funded hospital, the classic landing zone for the uninsured. It wasn’t a salaried position. I made my income the same way private practice doctors do, in a fee-for-service model, or as it’s more commonly known in the hospital corridors, “eat what you kill.” A hell of a metaphor for those of us who took the oath. My paycheck and our frustrated office manager reflected my inability to say no to those without insurance.
I was frustrated and disappointed too, mostly by a medical landscape that set up a push and pull between me and my colleagues, where “high productivity” doctors took home more income by doing more to people rather than for people. But my worries were insignificant compared to those of the young woman whom I’d yet to meet. I’ll call her Emma. She lived in a small town in Washington, just north of the Columbia Gorge.
Emma had a common complaint, back pain that was slowly getting worse. In her late twenties, married with three children, her situation was both similar to and very different than mine. I was also married with kids of my own, and even though I was the lowest paid doctor in my group because of my “choice” to take all patients, I was a surgeon. That meant that I could live comfortably and support my family.
Her concerns were more basic. Emma and her husband both worked at low paying jobs to support their kids. Her concern was one that I never had to think about: whether to visit a doctor to address the increasing pain in her back or hold on a bit longer until she or her husband found a job with health coverage. She had to weigh buying shoes for her kids and putting food on the table against a possible expensive battery of tests and scans. With no insurance they could quickly have been looking at thousands of dollars of debt, a very common path to bankruptcy in the U.S. Her strategy was as good as any. She decided to wait.
The pain grew by the week but she managed to deal with it. She pushed aside any suspicions that this might be something other than a misplaced disc or the “toddleritis” of a young mom. She didn’t entertain the possibility of something worse. She literally couldn’t afford to.
As I lived my life a world away from hers, a nest of normal body cells, preprogrammed to live, grow and die became inexplicably immortal and the world silently welcomed another statistic. The cancer quietly multiplied cell by cell and began to grow. Slowly at first but then at a logarithmic pace, it invaded the back of her abdomen. The Affordable Care Act was still a few years into the future and would have no impact on either the woman or her family.
Emma was delighted when her husband eventually found a job with benefits and it would only be three short months before they were eligible for health insurance. The news alone, temporarily blunted the pain. But the cancer followed no calendar as it slowly choked off the two major blood vessels to her lower body. Her spinal cord was insidiously crushed. By the time the pain had become unbearable she was just two weeks shy of the date when her health coverage would begin.
Since World War II, when wage freezes made the addition of health insurance an enticing perk to attract good workers, we have permanently locked employment status to healthcare access and we have never looked back. Why we stuck with such an arbitrary system is anybody’s guess. It would make as much sense to say that those who drive a Ford get a basic form of healthcare and those who drive a BMW get premium care. Good luck to all those who use mass transit. Inertia and dollars most likely kept the status quo. The result for many Americans is, no job, no doctor, simple as that.
The day that this young mom stopped walking was the day that she was rushed to a local Emergency Department. It’s the classic portal of entry into a medical system that doesn’t willingly throw open its doors to the uninsured. The common sentiment is that people without insurance can get help in the E.D. which has a mandate to stabilize those who are acutely sick or injured, but offers no guarantee beyond that. She was just a little lady with a very big problem, one way beyond the capacity of emergency care.
I’ll be honest. When I answered the evening phone call from a doctor in another town I was annoyed. I thought it was going to be the typical Friday night dump, a simple problem at an inconvenient hour in a patient whose wallet biopsy came back negative. But when he told me the story of the young woman with back pain and how she waited for nine months until she couldn’t walk any more I was ready to listen. He told me about the tumor, her paralysis and the scans that looked awful.
“No one here will touch her,” he said, candidly. “It is too big and she has no insurance.” He asked if we could take her at our tertiary hospital.
Disarmed by his honesty I just said, “Sure, send her up.”
Each day as the tumor had grown it had choked off a bit more of the blood supply to her legs and pelvis. Her body’s natural reaction was to open up more and more blood vessels to bypass the blockage. These rapidly expanding veins and arteries, thin-walled and flimsy, are what fed her lower body. They also created a surgical minefield.
By the time that she and I met this tumor had consumed most of the back of her abdomen and left her spinal cord with less than ten percent of the normal space it once had. Our first trip to the operating room for a biopsy was a near disaster. The hemorrhaging started almost immediately. Packing off the abdomen bought us a short respite in which she and I had a tough conversation. I explained the situation to her. It was unlikely that we could remove the tumor without killing her. The biopsy showed a type of cancer that would not be responsive to chemotherapy or radiation. A complete surgical removal was the only real option for survival but given how invasive the cancer was, the chance of that was slim. Faced with the reality of a painful, paralyzed death or the significant possibility of dying on the operating table, she considered her children. She wanted to be a mother to them and not a fading burden, so she asked us to try and remove it no matter the consequences.
Five experienced surgeons, three anesthesiologists, and an interventional radiologist spent fourteen hours trying to pry the tumor from her belly, unsuccessfully. The hemorrhage was audible. In the end the cancer had won. The best we could do was debulk it and even that was nearly fatal.
She told me before the surgery that if the cancer couldn’t be removed, then she preferred to die on the table. My training and my conscience wouldn’t let that happen. I was weak, not heroic. When she woke up I had to explain to her that I had failed her on both accounts. I don’t think I’ve ever had a harder conversation.
It is very likely that an earlier presentation to the medical system would have made it possible to remove the tumor in its entirety or to at least avoid the outcome as it was. The mathematics of biology and doubling cell growth dictates that her chances would have been far better. But she avoided us because we are financially intimidating and we avoid people like her, the uninsured, because they don’t help us pay our bills.
Emma spent the last two months with her family before dying in pain. It was a financial nightmare to arrange for her to have even the simple dignity of dying at home, again, due to her under-funded status. The only way to make her comfortable enough to leave the hospital was to drip nerve-numbing anesthetics into her spine through a small catheter. No one wanted to pay. The state finally stepped up and helped her with home hospice care.
Years after her death, the nascent Affordable Care Act felt like it held some promise. Even if imperfect it signaled a change in our communal thinking from every man for himself, to one of concern for the health of our neighbors and friends. I’m incredibly saddened that our political winds now push us backward. In the interest of making America “great again” we set our compass from whence we came, to a time when health care was just a crap shoot between those who deserve, and those who, arbitrarily, do not.
Mr. Labrador was correct, Emma, like countless others had “access” to healthcare just as readily as she had access to a brand new Lexus. The argument is both specious and cruel.
When I took my oath in 1987, healthcare spending in the U.S. represented 10 percent of our gross domestic product, now it’s nearly 18 percent. Despite the recent rhetoric, this growth didn’t start with the Affordable Care Act nor did it accelerate during its implementation.** As doctors, like me, and the healthcare we provide become more expensive, access shrinks like Alice’s door. The essence of our oath shrinks with it.
It’s agonizing to watch our elected representatives vote to overturn the Affordable Care Act and then gloat over “the win,” while they further tear down the already dysfunctional machinery of our medical care. They held up “Obamacare” as a political piñata to swing at, but once broken, they had no idea what to do with what fell out.
Now, thirty years past my graduation, the pageantry, the costume and the words of the Hippocratic oath have faded in my mind. But I still clearly see and hear Emma who died a difficult death due to our communal lack of compassion. We are the richest nation in the world and yet we withhold medical care from each other in a short-sighted attempt to keep more for ourselves. We hand out bootstraps to those who don’t own boots and tell them to pull themselves up. Many of us spend our weekends on hard back benches professing our love of God and neighbor, we promise to “Do unto others…” but come Monday we do for ourselves.
* Saphora Smith, Idaho Republican Labrador Booed Over ‘Nobody Dies’ Comment on Health Care, May 7, 2017, www. nbcnews.com
** Data from the Organization and Cooperative Development and Centers for Medicare and Medicaid Services
Ron Turker has worked as a physician in the Northwest for almost twenty years. He is currently writing a novel of cultures, religions and love in a medical setting.
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