How We Do Harm (38 page)

The reexamination of the Avastin decision was more intriguing, especially in the context of Project LEAD.
It pitted the private decision against the concept of overall public good, micro versus macro.
In his private space, Tony-the-economist was debating Tony-the-husband.

“Project LEAD raises your consciousness,” he said.
“It does cause you to do self-examination.
If we say that one thing is the right way to do it for society, shouldn’t we be applying it to our personal decisions?
For me, this is interesting, because you don’t want to be a hypocrite.
I don’t want people to say to me, ‘You talk like an economist about this stuff, but when it came to the crunch, your wife took Avastin.’

“Was that irrational?

“I don’t know.

“I look back at some of that and think we probably shouldn’t have done that.
But the key part about it is that it certainly didn’t help.
If there had been a system that made it more difficult, it would not have done her any harm.”

*

AT
the end of Project LEAD, students are asked what they will do with their knowledge.
This question stumped Lilla Romeo when she first took the course in the spring of 2007, but ultimately she found a great use for her knowledge.
Taking the course in August 2010, Tony Romeo, too, wasn’t quite certain.
He was still thinking about it a month later, when we talked.

“I don’t want it to be about Lilla’s cancer,” he said.
“That may have been the thing that awakened us to the issues, but I don’t want it to be the thing that drives this throughout.”

Lilla was interested in brain metastases in part because of her diagnosis.
Should Tony be interested in the same?

“I am moving along in my mourning process, and I need to be doing things for the right reasons,” he said.
“I am also thinking about applying what I know outside breast cancer.”

*

NBCC
stays effective by staying focused.
Sure, the problems in health care are vast, but so far they have produced few fiercely independent, uncorrupted, genuine public movements.

In AIDS, some groups pursue evidence-based medicine, and in cancer, there is NBCC.
It’s notable that in 1996, urologists attempted to build a nationwide coalition of grassroots organizations.
They did so by having the American Federation of Urologic Disease, their in-house patient group, secure a grant from the drug company Zeneca to transport guys over to Houston.
No drug company paid for the 1991 meeting of breast-cancer groups.

“The problem is, people don’t realize they are not getting good-quality care,” says Love.
“So the first step is to show them.
And that’s really hard, because when it’s you, it’s too scary to think you are not getting good-quality care.
Even if somebody gives you a cogent intellectual argument, when you are sick, you have to believe you are getting good-quality care.”

This is a battle that needs to be fought.

Epilogue

AMERICAN HEALTH CARE
has some genuine successes.

Recently, I met a twelve-year-old girl named Grace.
She is a cancer survivor, cured of neuroblastoma several years ago.
Grace was a thriving seventeen-month-old toddler living in Paducah, Kentucky, when she developed swelling and a bruised appearance around her right eye.
The pediatrician initially thought it a black eye from some trauma.
When it did not improve over several days, the doctor did a more thorough examination and suspected the liver was enlarged or a mass was in the abdomen.

An ultrasound of the abdomen showed a mass in the adrenal gland and liver.
Ultrasound of the eye orbit was nondiagnostic.
Magnetic resonance imaging of the head was done with anaesthesia, to keep Grace from moving.
A mass was infiltrating the bones about the right eye and extended into the sella.
The sella is the part of the skull at the base of the brain where the hypothalamus and pituitary gland are located.

The pediatrician referred Grace to the Cincinnati Children’s Hospital.
She explained to Grace’s concerned parents that this was serious.
Grace almost certainly had a cancer, and it had spread.
It was in her head and abdomen.
Her eye and her liver and adrenal gland were clearly affected.
Other organs might be involved.
A biopsy needed to be done to determine what this was.

The parents asked about prognosis.
The pediatrician said she could not say.
Anything she said would be a guess.
This could be a lymphoma, which meant a possibility of a cure.
It could also be an incurable cancer.

Years later, Grace’s mom still talks about how the four days’ wait to see the pediatricians at the Cincinnati Children’s Hospital seemed like an eternity.
The five-hour drive to Cincinnati seemed never ending.

At the hospital, the family met with a group of pediatric oncologists and a group of nurses and social workers.
The mass in the abdomen involved the adrenal and the liver, but could be surgically removed.
This operation would allow the surgeons to get tissue and determine a diagnosis.
Surgery was scheduled for three days later.
The child was admitted to the hospital and began a regimen to clean out her bowels in case the pediatric surgeon needed to cut into the bowel.
This was the start of a six-month ordeal of therapy.

Grace was diagnosed early in the Internet age, but her parents learned a great deal about neuroblastoma and its treatment on the Web, allowing them to figure out what questions they needed to ask.

Grace was fortunate.
She had interested parents who remained objective and focused without panic.
One can be emotional and care without panic.
Grace had good doctors and health-care providers (nurses, social workers) at every stage of her therapy.
They knew what to do and were good at explaining it and supporting the patient and her parents.
Her treatment involved the appropriate use of surgery in her abdomen, high-dose chemotherapy, and high-tech proton-beam radiation therapy to the eye and base of brain.

Grace did well because she got the right therapy.
In the United States, pediatric oncology is generally well organized and seems to treat patients at a consistently higher standard than we in adult medicine do.
We don’t hear about pediatric oncologists providing unnecessary therapy, as we do among adults.
I often think that pediatric medicine attracts people who are good human beings who care—folks who realize that being a professional means you put the well-being of your patients above your own well-being.

America is a great place to get health care if you can afford it and if you are fortunate enough to know my friend Al Rabson or someone else who can help you get to good doctors.

Grace also had insurance.
Insurance is important if you are to get good health care.
Now, Grace is free of neuroblastoma, but her treatment puts her at increased risk of eventually developing leukemia.
Kids who survive cancer often have side effects from therapy.
Stunted growth, decreased mental abilities, constant worry, and post-traumatic stress disorder are all problems of childhood-cancer survivors.
Prior to the enactment of recent health-care reform legislation, kids who survived cancer were often unable to get health insurance due to preexisting conditions.

*

ALAS,
wealth can also steer a person toward bad doctors.
Some wealthy patients have to have the chair of the department as their doctor, or to go to the society doctor.
These doctors practice the best of medicine of the year they graduated from medical school.

Consider the case of an academic physician who had been known to get his doses wrong.
Physician practices at academic institutions routinely have doctors review each other’s charts.
This doctor appeared to prescribe unusual treatments and make mistakes in the calculation of doses.
Even when administered properly, cancer drugs can bring the patient to the brink of death.
An overdose can easily push him off the cliff.

The problem hadn’t reached the level where the doctor could be fired; or, for reasons that may at least in part have been political, dismissal was not an option.
Besides, dismissal, like disease, is a process.
It has to play out.
The findings were bad enough to cause the institution to place this physician under intensive monitoring.
Every order this individual wrote had to be cosigned by another doctor and a pharmacist.

This doctor had a hunch that a regimen he had devised would be effective in the treatment of triple-negative breast cancer.
His regimen included an old chemotherapy drug that hadn’t been used in oral form for at least a quarter century.
The idea was intriguing: instead of giving a drug intravenously every three weeks, why not give it orally every day for two weeks?
Instead of zapping the patient with a large amount of the agent and having it wash out fast, you let it build up slowly.

Nothing is wrong with experimentation as long as you write a protocol, get it approved, obtain consent from your subjects, and submit to oversight by an institutional review board.
In this case, the doctor apparently decided to test out the lab findings by staging an experiment on one patient.

However, this physician was already under review, and the reviewer and the pharmacist would never sign off on an oddball regimen.
To bypass them, the physician wrote a prescription, and the patient had it filled at a local pharmacy.
The pharmacist, who wasn’t used to dispensing cancer drugs, even in oral form, saw no problem, and the doctor effectively skirted institutional oversight.

Calculation of the dose was a problem, though.
Usually, a 120-pound woman would get 120 milligrams of the oral version of the drug daily.
If the drug is infused intravenously, she would get 720 milligrams—six times as much—every three weeks.
The doctor apparently got things confused and prescribed the oral drug in what would have been a reasonable IV dose.
Had the patient completed the prescribed course of treatment, she would have ended up receiving a cumulative dose that would have been eighty-four times the amount that would have been standard.

The patient never finished the entire course.
She developed a severe suppression of white blood cells and a fever and was hospitalized.
Fortunately, she survived.
The doctor in question was confronted, and ultimately a deal was reached: the doctor agreed to surrender his clinical privileges, and in exchange, the institution agreed not to press for the removal of this doctor’s license to practice medicine.

This means that in the future this doctor may be practicing medicine somewhere else, perhaps even dosing you or someone you know.

I know of one line of defense against these dangerous luminaries: challenge them to justify their treatment decisions.

*

LILLA
and Tony Romeo are probably the most sophisticated health-care consumers you will ever meet, yet even they were powerless to protect themselves from red juice.
And we chipped in, because their insurer failed to ask tough questions that were becoming increasingly obvious.

The system is not failing.
It’s functioning exactly as designed.
It’s designed to run up health-care costs.
It’s about the greedy serving the gluttonous.
Americans consume more health care per capita than the people of any other country.
In 2009, we spent more than $2.53 trillion.
That’s 2.5 times more than we spent on food.
It’s not easy to envision a trillion.
Let’s fix that:
A million seconds was twelve days ago.
A billion seconds was thirty-two years ago.
A trillion seconds was 30,000 years BCE.

We desperately need to focus on rational consumption of health care.
Rational consumption includes preventive services and health education.
Much of the money currently spent on health care is money wasted on unnecessary and harmful, sick care.
Even for the sick, a lot of necessary care is not given at the appropriate time.
The result is more expensive care given later.

A rational system would stress prevention and health education.
We could use a lot of that.
In 1970, 4 percent of American kids, aged five to eleven, were obese; today, more than 20 percent are.
In 1970, 15 percent of American adults were obese; today, more than 35 percent are.
This uniquely American obesity epidemic is causing a rise in the rates of a number of chronic diseases.
The prevalence of diabetes, cardiovascular disease, stroke, orthopedic injury, and cancer are all affected by obesity, high caloric intake, and lack of exercise.
Consumption of medical care and health-care costs are destined to grow dramatically due to this tsunami of chronic disease.

Waste in medicine could be reduced if only we were more rational.
The bad actors include doctors and health-care providers, hospitals, drug and device manufacturers, insurance companies, lawyers, and patients.
If Polo were alive today, he would say that three evils have infected American medicine: apathy, ignorance, and greed.

The 51 million American adults who have no insurance live desperate lives.
The system almost certainly killed Cedric Jones by denying him the defibrillator he needed.
But even those who have insurance can be excluded from care.
Edna Riggs was—at least in the beginning—insured.

Some of the apathetic are those who are satisfied with the health-care system and perceive that they have access.
Many of those people will be surprised to learn that their health insurance is not as good as they thought it was.
Helen Williams was getting what she thought was the best care imaginable while we were paying for her unproven, abominable care.
Martin Schmidt was insured, too.

Some of the apathetic are those like the lady who wants a prescription for Nexium and notes that her insurance pays for it.
She doesn’t want the cheaper equivalent, Prilosec.
If you are willing to pay twelve times more than you need to for the privilege of taking Nexium, you are not being patriotic, you are not being a patron of science, and you are not earning the respect of the drug’s maker.
As a scientist, I can assure you that we are being laughed at.

The rich and the insured should not be protected from their own folly.
They should not be subsidized as they make decisions that are akin to those of the Huzjak children.
Debbie Kurtz should not be shielded from the financial consequences of getting the unjustifiable care that presumably helped an unscrupulous doctor make a payment on a Mercedes.
The Mercedes dealership should probably send thank-you notes to everyone who pays premiums to the insurance company that wrote Debbie’s policy.
She may still pay for her foolishness by getting leukemia later in life.