The dual tragedy of suffering catastrophic illness and being uninsured

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers. He was immediately admitted to undergo a procedure to identify the site of blockage and insert a plastic stent to drain bile externally. While awaiting the outcome, I had a premonition that the worst was yet to come. The doctors brought dreadful news that a massive tumor, too large to remove surgically, lay centrally in the liver. The remote possibility existed of a benign condition masquerading as cancer. The aggressive option was upfront chemotherapy and radiation to shrink the tumor, for possible surgery afterwards. But several surgeons deemed the case hopeless, and estimated my uncle had only 6 months to live. They recommended hospice, and a more comfortable internal metal stent. My family chose not to share these findings with my uncle until he recovered from anesthesia.

The crushing blows continued. Within 36 hours, my uncle lapsed into a coma from kidney failure induced by bile toxins. Knowing the costs, we refused transfer to the ICU. Dialysis was necessary, but the nephrologists regarded the situation futile and refused treatment, comforting us that dying from kidney failure was painless. Miraculously, he rallied. Seeing improvement, the nephrologists started dialysis. We could finally share with my uncle the difficult choices ahead.

He responded “It’s hopeless. Why risk money that could provide my daughters’ education?” He asked to be made “do not resuscitate”, and declined surgery. Two weeks of recuperation made transfer to less expensive skilled nursing care possible, but here I learned it takes money to save money. Ambulance transport was mandatory, costing $1700. As I read the dispatcher my credit card information, I wondered if I could have driven him myself.

In the following days, we tried everything to minimize costs. My uncle had a fever, but refused evaluation in the ER, and was treated with blankets and oral antibiotics. His fever broke, as did the stitches on his stent, which I re‐sutured at the bedside.

In the end, my uncle made the ultimate sacrifice for his daughters by rationing his care. Death came swiftly, only 72 days after he became jaundiced. He never received metal stents, or saw New Jersey again.

His final medical bills totaled over $250,000. Charity care was denied, and MediCal unavailable since he was from out of state. After receiving a 20% discount for paying in a lump sum and in cash, we negotiated a final 40% discount.

The costs of his care can be translated as follows. Each session of dialysis equaled a month of private college tuition. Each day’s blood work would have provided a year of textbooks. The daily hospital room charge would pay for a half‐year in the dormitory. The anesthesia fee would have purchased a full year’s meal plan.

My uncle’s cause of death remains unknown. Weeks into treatment, his tumor markers came back normal. Surgery might have been curative, or confirmed a hopeless situation. The cost to know with certainty would have consumed his inheritance. The World Health Organization recognizes this universal tragedy worldwide: “The poor are treated with less respect and given less choice of providers. In trying to buy health from their own pockets, they pay and become poorer.”

Whenever someone faults the medical system for the epidemic of bankruptcies, I ask instead: My uncle was 59, and for decades had contributed to the system by paying health insurance premiums while employed. Did the system treat him fairly when he needed care?

John Maa is Assistant Professor of Surgery, University of California, San Francisco.

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