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Authors: Otis Webb Brawley

Tags: #Health & Fitness, #Health Care Issues, #Biography & Autobiography, #Medical, #Clinical Medicine

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BOOK: How We Do Harm
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At Grady, we use white-blood-cell-building drugs only on folks who have a bout of fever due to low white cell count.
Red-blood-cell-building drugs are used only when a patient develops symptoms of anemia while getting chemotherapy.
At the time of Martin’s treatment, supportive-care drugs were a standard booster for an oncologist’s bottom line.
Overtreatment with these drugs was common and was driven by market forces.
Drug manufacturers gave volume discounts to private practices.
The more doctors used, the greater their profits.
As they boosted the cost of care, the patient’s copayments rose as well.

Many of Wilson’s treatment decisions seem mystifying even if you accept the notion that his goal was to maximize profits.
The treatment he chose for Martin isn’t known to justify the use of supportive medications.
Had he wanted to justify the use of these drugs, he could have sold Martin on FOLFOX.
This would have allowed him to collect the profit from oxaliplatin, which is far more expensive than 5-FU/leucovorin.
Moreover, oxaliplatin’s more severe side effects might have made Martin sick enough to justify giving him red-and white-blood-cell-building drugs.

Wilson was not interested enough in either maximizing his profits or in giving the patient appropriate care.
He simply threw treatments at Martin without thinking, collecting the money that came his way.
Never mind that the treatments were wrong and perhaps damaging.
He simply didn’t care.
He seemed to be motivated by a puzzling combination of laziness and greed.

I have some tolerance for below-average or average doctors who know their limits and stay within them.
Doctors who don’t know the limits of their knowledge are another matter.
Doctors who don’t know what they don’t know—and don’t care—are dangerous.

*

I
meet Martin in person a week later.
We have a lot to discuss, and I struggle to decide how much I should tell him.

Should I tell him that his previous doctor was a dangerous ignoramus?
Would he benefit from this knowledge?

I tell residents and fellows to avoid criticizing other doctors in similar situations.
If I tell Martin the things he deserves to know, I risk being hauled into court for slander by Wilson.
Alternatively, if Martin decides to sue his former physician, I could get hauled into court as an expert witness.

No doctor can clean up the profession all by himself.

I limit myself to telling Martin that I would have offered him a different chemo regimen: “I—and the medical literature—have a preference for a regimen that contains a drug called oxaliplatin.”
I am careful to explain how the medical staff agreed that chemotherapy was called for.
I explain that there is more than one way to skin a cat, and that there is more than one way to treat colon cancer.
I give him a choice of chemotherapy options, explaining the pros and cons.
I explain what we know, what we do not know, and what we believe about his disease and its treatment.
FOLFOX increases the chances of a cure, but this comes at a cost of peripheral neuropathy and possible leukemia down the road.
My policy is to explain the entire picture—including outcomes, side effects, and inconvenience to lifestyle—to the patient and let him decide on therapy.

When patients say, “What should I do, Doc?”
you try to work it out with them.

Martin mentions his desire to return to work while getting chemotherapy and notes that this is important to his family’s financial health.
I tell him that I understand, and I do.
My parents lived from paycheck to paycheck throughout my childhood.
I want Martin to understand that my compassion is genuine.
It is, too.
I don’t want to fake it.
I can’t.

As I discuss treatment strategies with Martin, I don’t want my skin color to distract him.
Race evokes different responses from different people in different settings, and I don’t want it to get in the way.
I can’t forget for an instant that I am a black guy dealing with a white guy in the South.

I am a black guy in authority, and for the sake of my patients I can’t afford to trip over land mines.
It’s not about me.
The stakes are high for Martin: the things I say, things I do, will shape our relationship and with it the rest of Martin’s life.
I don’t know whether keeping this at the forefront of my mind makes me a better doctor, but it does keep me sensitive to the importance of the doctor-patient relationship.

Eventually, we decide to try FOLFOX, even though I take care to tell him that I have no data on someone treated with one regimen and switched to another.

Next, we turn to logistics.
I tell him that I would be the attending physician responsible for his care.
Camille would be his fellow, doing day-to-day care for only six months.
After that, Camille would move on, and Martin would have to adjust to other fellows.

Passing through the clinic over the next year I develop a good relationship with Martin and Rae.
He becomes comfortable enough with me to discuss his concerns about coming to Grady and his shame in thinking this is where black people get care.
I tell him about my fears of white people.
We laugh.

Martin continues to get follow-up surveillance at Grady, and four years after treatment ended he is disease-free.

A negative wallet biopsy may have saved his life.

*

RECENTLY,
I heard about a pediatric orthopedic surgeon’s disastrous job interview with a large practice group in the Northeast.

“We have a strict rule here,” one of the practice leaders told him.
“We eat what we kill.”

Behind the curtain, when no patient was within earshot, this revolting metaphor told the interviewee that members at that practice are responsible for bringing in business, and their ability to attract patients determines their pay.

You can’t help getting crass in medicine.
Training starts early.
The stuff you hear—and the stuff you say—as a resident, particularly during ER rotation, is unacceptable in any civilized setting.
We doctors ultimately live in two worlds that require two forms of self-expression.
In one world, we speak openly to our colleagues, without niceties.
In the other setting—when patients are around—most of us try to behave, at least to the best of our ability.

Surgeons tend to be more resilient than other docs, and the surgeon who told me this story isn’t a meek soul.
But the hunting metaphor offended him deeply.
Having just returned from earthquake-stricken Haiti, where he performed gruesome amputations of the limbs of children who had been pulled out of rubble, he was in no mood for crass talk that debased human life.
In no way could he force himself to join a practice where it’s okay to talk about patients as things that are killed and eaten.

Every time I hear a story like this, I praise the gods for going easy on me.
I work for a big public charity and I practice at a big public hospital.
I chose this life, gravitating toward research and, to the extent possible, shielding myself from the perverse incentives that entice my colleagues to do harm.
I have no overhead to cover, no sales targets, no worries about Medicare reimbursement policies and insurers who take too long to pay.

Would I be a very different doc if I were out there in private practice?
Would I preserve the moral principles to refer out the patients whose diseases I don’t understand well enough to treat?
Would I be willing to forgo the five-or six-figure revenues that treating such a patient could bring to my practice?
So what if I give him some bullshit?
So what if I don’t know what I am doing?

Revenues, after all, aren’t smeared with blood.
They are numbers on a page.
They aren’t dependent on whether I help my patients or harm them.
And if I screw up, is there a reason to believe that anyone would be the wiser?

 

PART II

Failure Is the System

Chapter 6

Red Juice

IN 1995,
Lilla Romeo was living a happy life as an American professional in Europe.
Lilla’s husband, Anthony, was an executive for Unilever, a global food and personal-care-products company, in London, and she was selling Mercedes cars in Kent.
They were raising three children.

When Lilla was first diagnosed with breast cancer, it seemed to be only a minor setback.
The disease was caught early—in Stage I—and surgery followed by radiation had a good shot at curing her.
Statistically, the chances were three to one that the problem would simply go away after treatment; with cancer, you don’t ask for better odds.

Lilla was in the unlucky 25 percent.
Five years after the initial diagnosis, when the family was back in New York, a routine scan showed that the disease had returned.
The prognosis turned grim.
The cancer was incurable, and the goal of treatment was to delay the inevitable.
Lilla started nonstop chemotherapy.

When we talk on the phone in 2010, Lilla has been on chemo for nearly ten years with just one eight-month break.
(Doctors inventively call such interludes “chemo holidays.”) Lilla is an intensely analytical person.
Her phrases are chiseled to the point of fragility.
She takes time to think, then pauses to let her words sink in deep and do their work.

She remembers the day in 2003 when an oncology nurse at New York University Medical Center asked if she was feeling tired.
Lilla gave the question a little thought.
Of course, she was a bit worn down.
What else would you expect to hear from someone going into year four of nonstop chemo?
She answered affirmatively.

“That would be because your hemoglobin is just under ten,” the nurse explained.
Lilla was on the borderline of developing anemia, a common side effect of the cancer drugs.
The nurse explained that in the old days, a patient like Lilla would get a blood transfusion.
This cumbersome procedure involves tubes and hours in the doctor’s office.
Worse, transfusions carry the risk of HIV and other blood-borne infections.
By 2003, thanks to better blood-screening technology, that risk had been lowered, but there was still a risk.

Now, the nurse said, almost the same results could be attained with a single shot of a hormone that helps the body produce hemoglobin.
The nurse made it seem simple, safe, clean.
The red blood cells Lilla needed would be made by her own body.

Lilla knew something about cancer-fatigue drugs.
In 2003, everyone with cancer—and some without—did.
That’s because Johnson & Johnson, the gigantic pharmaceutical company, was bombarding the airwaves with ads for its hemoglobin-producing drug Procrit.
Procrit ads depicted heartwarming scenes in which cancer patients spoke of the drug’s miraculous ability to restore the “strength for living” that had been drained by cancer chemotherapy.

In one ad, an owner of a New England bed-and-breakfast thanks Procrit for giving him the strength to confront the busy season.
In another, an elderly African American woman says proudly that Procrit had given her the strength to make an omelet.
A grandfather throws a giggling grandson up in the air, and an elderly white woman has regained the strength to return to running her flower shop.
“More red blood cells can mean more strength,” the ad says.
Cancer is losing its power to rob people of normal life.
The effects of cancer treatment have become easier to tolerate.

Lilla is a born skeptic, and after a career in sales she understands the liberties people take in marketing.
Yet, as she sits in the treatment room in 2003, Lilla sees no reason to believe that her situation calls for hard-nosed analysis.
How could there possibly be a controversy?
Surely the Food and Drug Administration had approved Procrit for making cancer patients feel stonger.
Would the agency approve a drug that would harm her?
And surely the FDA was overseeing those televised ads.
Isn’t that part of what that agency does?

She had no idea that her infusion chair was the front-row seat for observing a spectacular, indeed, cataclysmic, failure in medicine.
Pharmaceutical companies were promoting an untested therapy that was purported to make patients feel better and stronger when, in fact, it caused strokes and heart attacks and in some cases made tumors grow.
My colleagues didn’t object.
The vast majority of physicians treating cancer were prescribing these drugs and benefiting handsomely from doing so.
Prescribing these drugs created enough of a financial bonanza for doctors that many of them turned off their professional skepticism.

Cancer patients and their doctors routinely accept horrific risks as they inject drugs intended to cure cancer or slow down its process.
Alas, hemoglobin-building drugs did nothing of the sort.
They treated anemia, and, according to claims made in advertising, made patients feel better.

Until the FDA finally clamped down, these drugs became the single largest category of agents used in oncology.

You can’t scrutinize everything, even if you are a skeptic by nature.
When you are a patient confronting a devastating disease you know next to nothing about, and decisions have to be made in a hurry, you end up having to trust somebody.

Certainly, no patient can be expected to take the weeks or months that would be required to conduct a critical examination of the criteria a federal agency used when it approved a particular therapy.

Lilla delegated decisions to the doctors and nurses at the cancer center where she was receiving treatment.
She was sure the doctors wouldn’t recommend a drug that would be inappropriate for a breast-cancer patient.
Lilla had enough problems; her anemia, which she now believed was causing fatigue, didn’t need to be one of them.

She remembers feeling a little better after getting a shot.

Those were paradoxical years for hemoglobin-building drugs.
Sales of this category of drugs grew explosively, making them the largest-selling class of drugs used in oncology, with 2006 gross sales of $4.85 billion in the United States alone.
That year, worldwide sales were $10 billion.

At the same time, evidence of harm—including strokes, heart attacks, and something the FDA called “tumor promotion”—accumulated with alarming consistency.
Tumor promotion
is an Orwellian term.
It stands for the drug’s ability to make tumors
grow.

BOOK: How We Do Harm
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