A uniquely American tragedy of healthcare delivery and finance

Editor's note: Some portions of the editorial below, which ran in the January 7 edition of the FierceHealthFinance newsletter, have since been edited to provide additional clarity on the author's opinions. 

The story of Jahi McMath, documented in many media accounts, is tragic.

The 13-year-old underwent a tonsillectomy, adenoidectomy and removal of her uvula at Oakland Children's Hospital in California last month and wound up brain dead. The hospital and the family engaged in a public and very ugly legal tug of war over whether her life support should continue, as well as a debate over the meaning of "dead."

None of this should have happened. However, it did happen, primarily because of the peculiarly American way our country delivers and finances healthcare--which costs twice as much as in any other country on earth--and how our access to it is conflated with our notions of personal freedom. 

When I was growing up in the 1970s, tonsillectomies were the single most common medical procedure among my friends. I think I remember seeing as many of my playmates' tonsils in bottles in their rooms as I did Tonka trucks. But the medical efficacy of tonsillectomies to treat sore throats came under fire in the late 70s, and the rates of the procedure plummeted. Nowadays, it's mostly used to treat sleep apnea, as it was in Jahi McMath's case.

But sleep apnea is usually a problem among middle-aged adults, not 13-year-olds. Jahi McMath was severely overweight, raising questions about whether obesity was the cause of her sleep apnea, according to Guardian Liberty Voice. There's an epidemic of obesity in the U.S. linked to the easy availability of junk food and fast food, and it is affecting the health of adolescents as well as adults. And while I cannot say for sure that Jahi McMath had such a diet, I wouldn't bet against it.

It's unclear if Jahi McMath's caregivers counseled her to lose weight to address her sleep apnea, put her on a healthy diet and provided her with a machine to assist her breathing at night. And whether the family pursued it remains an open question. Yet despite Jahi's own misgivings about surgery--according to CBS News and other media reports, she expressed fears she would never wake up--and weight and respiratory issues placed her at greater risk under anesthesia. I know if my daughter had those health conditions, I would have never opted for surgery.

In one scenario, a surgeon and anesthesiologist are paid hundreds and thousands of dollars for about 40 minutes of work. Doctors who advocate weight loss and sleeping assistance don't realize the same kind of profits.

And while the outcome was the absolute worst possible for the family, they did what many Americans do when confronted with end-of-life issues: They staved off the inevitable.

"We have our strong religious convictions and set of beliefs and we believe that, in this country, a parent has the right to make decisions concerning the existence of their child: not a doctor who looks only at lines on a paper, or reads the cold black and white words on a law that says 'brain dead'," Jahi's family said in one statement.

In the U.S., the belief we should keep our doctor at all costs is close to gospel. Of course, when it's discovered that the doctor's decision-making process didn't lead to the ideal outcome, it becomes equally convenient to condemn his or her judgment and again seek the quickest pathway to satisfaction.

And despite the seemingly unique media attention given to her plight, Jahi McMath's situation is not uncommon in the U.S. About 1 percent of the population dies every year, but they account for 10 to 12 percent of all healthcare costs, and up to a third of Medicare costs. That's partly because families cannot bear to face facts. Many individuals do not have end-of-life directives for the same reason. And at least one state has recently codified such conduct.

Bottom line for this freedom: Jahi McMath's life support no doubt cost Oakland Children's Hospital thousands of dollars a day. In addition, a hospital in this situation has to pay hundreds of thousands more to go to court and faces other expenses, such as the need to hire a crisis professional. All of these costs will eventually be passed on to other patients.

Should Jahi McMath wind up in a skilled nursing facility on a ventilator, the media will lose interest in her story until the lawsuits get settled. But someone is going to have to pay for her around-the-clock care until her body or her family gives up. The McMath family has raised more than $55,000 via the Internet to transport Jahi to a long-term care facility, but no doubt Medicaid or another tax-funded program will have to step in as their resources dwindle.

Rather than occurring suddenly, this sad story built up in stages. First was a chronic condition typically seen in older adults afflicting a child that I suspect is due to obesity caused by a poor diet. That led to medical decisions that may have been influenced not by the best outcome but by the most expedient pathway and current reimbursement models. This, in turn, led to a denial of reality couched as a personal expression of freedom. And it all led to a never-ending cascade of costs.

The story of Jahi McMath is indeed a tragedy. And it's one that could only be staged and paid for in America. 
-Ron (@FierceHealth)

Related Articles:
Beth Israel CEO: Curb unnecessary end-of-life care to lower costs
EHR alerts can facilitate end-of-life discussions
Hospitals make varied progress on end-of-life care
Oklahoma end-of-life law could boost hospital costs
U.S. most expensive, bureaucratic nation in world to obtain healthcare
Report: 113 million obese Americans by 2022

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