2012-06-28 19:10:14

For One Patient, Health Reform Came Too Late

Ed. Note: Today’s Supreme Court decision upholding key portions of President Obama’s signature health care reform legislation means that more Americans will now be able to afford insurance. But millions have already been priced out by steep rate hikes by insurers, increases that will be outlawed under the new rules. For one Bay Area man, the ruling did not come soon enough. Sanjay Basu, MD PhD is a resident physician in the Department of Medicine at the University of California San Francisco.

Carl was a free man. “A guilty man,” he would say, “but a free man.” He was 55 years old when I became his doctor. It was 2010, and the beginning of the long legal battle over President Obama’s health care reform bill.

Carl would always complain about the legislation. He had been told, by a friend in Oakland, that he would benefit from the reform. His friend, a labor union organizer, had lectured him repeatedly about the importance of Medicaid expansion, “medical homes” and preventive health care. This was all hogwash to Carl. Carl understood the term “individual mandate,” and he had heard an analogy that he liked: that the government would soon force him to eat broccoli. This was a sign, he said, of losing his freedom.

As his doctor, I did not want to talk about politics with him. I wanted to talk about his drinking. “I’m a guilty man,” he said. “And I’ve made mistakes.”

Carl had started drinking at the age of 17, following the death of his father in an industrial accident; his mother had moved the family north to Bayview-Hunter’s Point to live with his uncle. Carl finished high school here before moving to the East Bay, was briefly working in construction, but irreparably damaged his right leg after a night of heavy booze that led to a fall down concrete stairs. He had been married for a few years before he became wheelchair-bound. His ex-wife now had his son in Los Angeles, but he did not visit them. He’d become homeless and, as he put it, “accepted my responsibilities. I’ve made mistakes, but I’ve moved on. I still live my life.”

Carl was a mix of contradictions, a complex man who could at once be a poster child for Republican stereotypes of the poor, and yet himself join the Tea Party. My job was to ignore all of that; I was focused on getting him through one event: dealing with the result of his recent CT scan, which showed that he had developed liver cancer.

Carl wanted to live. He didn’t hesitate to accept the surgery we recommended to him. And as much as he hated the choices he made in his life, he also enjoyed living. So we began the extensive preparations for his surgery. He consented to transfusions and numerous blood draws. He agreed to invasive tests during which dye would be shot through his veins, burning his arms and potentially cauterizing his kidneys.

Then, in an operating room, he would be filleted down the middle and across the side, sheering off portions of his liver, leaving the rest bleeding like a wet sponge that even the best surgeon might be helpless to stop. But Carl consented to all these risky procedures, as they were his one chance for survival.

On the day of the operation, our chief surgeon and three assistants carefully scrubbed between their fingers, snapped on fresh gloves, draped themselves in sterile gowns, and waited. They stood in a cold operating room, arms crossed, their breath fogging their glasses, waiting for Carl to arrive. But he never came.

I had assumed Carl had relapsed to drinking. He had been sober for two months before the surgery, frequenting AA meetings. We sent a cop to his apartment; the police found him lucid, but refusing to go to the hospital.

Carl wasn’t drunk or scared. He just couldn’t pay anymore.

In the months before Obama’s legislation was upheld by the Supreme Court, Carl received a notice from his insurance company that he was going to pay a higher deductible. His premium rose by 30 percent. And all across the country, other patients like him faced the same rise in insurance costs, a practice called “purging” to get sicker people to pay more of their own health care expenses, shifting the rolls of insurance companies in an increasingly common practice now outlawed under the Obama rules.

Profits for insurance companies went up an average of 41 percent during the recession, but people like Carl stopped going to their surgeries, or their doctors’ visits, or even calling an ambulance for emergencies. For the first time in years, medical costs throughout the country went down — not because of more successful preventive care, but because millions of people like Carl were unable to pay and didn’t come to the hospital.

Last year, 72 percent of Americans reported struggling to cope with medical bills or health care-related debt, more than those with mortgage-payment difficulties, and many of them deferred medical care they needed.

Carl spent the last few months of his life in a single-room occupancy apartment in Alameda. We talked briefly every few weeks. His breathing was paced, his abdomen full of tense fluid caused by liver failure. He continued to talk about his freedom, now through a raspy voice and short gasps. He did not feel free, but constrained by his own body and his wallet, imprisoned by deductibles and hospital bills.

“I suppose this is the fate of a guilty man,” he said.

Carl did not live to hear of the Supreme Court decision. I’m not sure if he would have agreed with it, or even if he would have survived to make use of the Obama legislation and complete his surgery. Carl was his own harshest judge. He was far less abstract than the doctors and lawyers who debated the law — details involving mandates and commerce clauses and cost containment.

Whatever our talk of legislation, I could not convince him to feel dignity about his death. He remained at conflict with himself, free from government, constrained by economics, and always trying to be moral.

“My friends will say that I deserved this,” he once told me, shortly before he died. “They may be right, but I also thought this was a country where freedom didn’t come with a price tag.”

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