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The Ultimate Sacrifice

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, MD, is Assistant Professor of Surgery at the University of California, San Francisco.

Cost of Care:
On Labor Day 2010, Costs of Care, a Boston-based nonprofit, offerred $1000 prizes for the best anecdotes from doctors and patients that illustrate the importance of cost-awareness in medicine. Two months later we received 115 submissions from all over the country – New York to California, Texas to North Dakota, Alaska to Oklahoma. We feel these stories are poignant because they put a face on some of the known shortcomings of our system, but also because they unveil how commonplace and pervasive these types of stories are. To learn more about the contest and read more of our stories please visit www.CostsOfCare.org (Twitter: @CostsOfCare).

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Lessons Learned from my Uncle’s Sacrifice | Health & Fitness GOALS!Lessons Learned from my Uncle’s Sacrifice | The Health Care BlogJenndebraFrank Recent comment authors
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[…] answer the question I posed at the end of the previous article, I do not believe that my uncle was treated fairly by the system. Sadly, he was just a few years […]

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[…] John Maa, MD, is Assistant Professor of Surgery at the University of California, San Francisco. This post is a follow-up to his original story, The Ultimate Sacrifice. […]

debra
Guest
debra

I am upset about this on so many levels. Yes, the uncle probably could have bought COBRA insurance, but COBRA probably would not have been an option if the company he worked for was small, or if the company went out of business. And to Nate, the cost of PPO insurance for a 55 year old in California is closer to $1000 a month for one person, $2000 monthly for a family, not the $500 you use. Uncle was 59 and probably would have had even higher cost. If the uncle had acted like millions of unresponsible people, and just… Read more »

Peter
Guest
Peter

“The definition uses the term “chronic” to capture only those conditions that are long-term in nature. Your doctor will be able to help you identify whether a condition is chronic or whether it is acute.” Nate, it appears he would not have been covered anyway from the text of the definitions used above. If things like cancer were used as pre-existing then why buy any insurance, just sign up when you have catastrophic. I like that plan as when the Republicans defeat the mandate but keep the rest of the “popular” aspects of the bill I will use it to… Read more »

nate ogden
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nate ogden

“I don’t think Dr. Maa’s uncle would qualify as death is not a pre-existing.”

No but the condition that killed him would.

” I did look at the plan and wonder if even he could afford it. ”

Did you miss the part where they paid the hospital $120,000 cash becuase he didn’t have insurance? $120,000 cash payment and you wonder if he could afford $440 a month. FYI ya he could have afforded at least 272 months worth.

Peter
Guest
Peter

I don’t think Dr. Maa’s uncle would qualify as death is not a pre-existing. I did look at the plan and wonder if even he could afford it. The cheapest plan for his age is $440/month and he is on the hook for $5000 of uncovered charges. That’s about $10,000 per year. I guess it would come down to how much of his inheritance he was willing to part with. If he couldn’t afford a non-preexisting plan how can he afford this? It still appears to me that no amount of money could have saved his uncle from this cancer.

Frank
Guest

WRONG NYTimes says OWEbama is a DECEIVER — http://www.nytimes.com/2009/11/25/health/policy/25bankruptcy.html ” .. How many personal bankruptcies might be avoided is unpredictable, as it is not clear how often medical debt plays a back-breaking role. There were 1.1 million personal bankruptcy filings in 2008, including 12,500 in Nashville, and more are expected this year. ” .. Last summer, Harvard researchers published a headline-grabbing paper that concluded that illness or medical bills contributed to 62 percent of bankruptcies in 2007, up from about half in 2001. More than three-fourths of those with medical debt had health insurance. ” .. BUT the researchers’ methodology… Read more »

Nate Ogden
Guest
Nate Ogden

10%-20% fraud?
trillion in unfunded promises?
inadequate coverage and protection?

“It would certainly work for me.”

That doesn’t surprise me at all Margalit. Have you always hated your kids and grandkids or did it develope over time?

Margalit Gur-Arie
Guest

“Social Security Premiums?
Medicare Premiums?
Taxes?”

Let’s make health insurance work the same way as the above, Nate. Would that work for you? It would certainly work for me.

Nate Ogden
Guest
Nate Ogden

I don’t know Peter maybe you should go ask a Republican

Peter
Guest
Peter

“What would change if employers gave every employee a $3600 raise then left it up to them to buy insurance?” “cost would sky rocket” But Nate, wouldn’t that be equivalent to Republican voucher system. Wouldn’t the heath care industry finally see there were no deep pockets and reduce costs/prices? Wouldn’t that promote consumer driven health care? We could all just go to the insurance exchange. Isn’t that the controls you’re always pushing for? “tens of millions would pocket the money instead of buying insurance The cost of insurance for those that did buy it would not be affordable” But Republicans… Read more »

Nate Ogden
Guest
Nate Ogden

“The real problem stems from the fact that health insurance is intertwined with employer benefits. It’s ludicrous that you must rely on your employer for health.”

Does this also apply to;

Life Insurance?
Unemployement Insurance?
Social Security Premiums?
Medicare Premiums?
Taxes?

What would change if employers gave every employee a $3600 raise then left it up to them to buy insurance?

cost would sky rocket
tens of millions would pocket the money instead of buying insurance
The cost of insurance for those that did buy it would not be affordable

What exactly would be accomplihed by decoupling employement and insurance?

Paula Cross
Guest

As we have watched the progression of health care reform, please keep in mind that the primary purpose of Health Care Reform was to get people without access to coverage, access to coverage. Which is great, but can it be affordable? At this time, some employers are taking the initiative to investigate and implement limited or fixed benefit plan options. Do you currently cover all of your employees? OR, do you currently carve anyone out of the plan based on their employment classification? The law does allow you to offer a limited plan when affordability is an issue. This allows… Read more »

Winston
Guest
Winston

The real problem stems from the fact that health insurance is intertwined with employer benefits. It’s ludicrous that you must rely on your employer for health. As Americans, would we accept our employers to own our homes too, as they do in Russia? The health insurance reform legislation of 2009 only further bloated the leverage employers have over their employees when it comes to health insurance. The best thing the government could do is remove the tax breaks and establish a more operational independent health insurance market so that people like your Uncle won’t have to lose coverage along with… Read more »

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[…] the rest of this troubling post at The Health Care Blog by surgeon John Maa if you doubt that we need health care reform in this […]