How We Do Harm (5 page)

And, of course, the views expressed by the authors of this book are not intended as a substitute for medical advice, diagnosis, or treatment provided by the reader’s personal physicians.

Chapter 3

Cadillac Care

WHY DO I WORK
at Grady?

To do some good, if I can.

That’s part of my motivation, but not all of it.
I go to Grady for reasons that wouldn’t surprise my grandfather Willie Brawley.
Willie, Benjamin’s nephew, was a sharecropper.

I can see that in 1930 a man whose name matches my grandfather’s was listed among inmates at the Wetumpka State Prison in Alabama.
It could be him.
According to a family story, he became a union organizer and was lynched in 1948.
My family didn’t treat his death as something to be proud of.
Even my grandmother—his wife, whom I knew well—didn’t talk about him much.

As a black man and a union organizer in the South, he surely understood what he was up against.
Apparently nothing beckons a Brawley more powerfully than a hopeless cause, and I hear its call on the PA system at Grady.
I go to Grady to understand where we are betraying our patients, where we are betraying ourselves, and how we can learn to do better.
If you want to stay grounded, Grady is the place.

Respect for people I knew growing up in Detroit could be a part of it, too.
As I grow older and more experienced, I become increasingly amazed by the wisdom of those folks.
When you are black and poor, you are by definition a survivor, and survivors have reasons to be suspicious.
My parents and their friends didn’t trust doctors, didn’t trust hospitals.
A hospital was the place where they withheld treatment or where they tried things on you without telling you what they were doing and why.

White doctors think that we—black folks—worry about becoming unwitting subjects of medical experiments.
That’s not quite it.
Folks I grew up with were worried that the doctors who treated them had no idea what they were doing, that they were experimenting, trying various drugs or treatments, hoping that something might finally work.
My family members were afraid they would pay the price for exercises in trial and error.
It was about trust.

When I was starting my career in medicine, I was contemptuous of such thinking.
Initially, I dismissed these folks as outsiders who were suspicious of the system that excluded them.
Now, having seen the way medicine is commonly practiced, I see that they were right to be suspicious.

Now I wonder, can all of us benefit from a dose of skepticism?
Can the health-care system make itself trustworthy, become accessible and driven by science?

*

I
begin my search for answers at Grady, where patients are vulnerable, contrasts stark, lessons harsh.
Yet, these are not entirely stories of desperation.
Since we take patients no one wants, and without expectation of payment, we are immune to market pressures and the plethora of perverse incentives that spread dysfunction through the health-care system.

Thus shielded, we can—often—provide better care than doctors who treat the rich.
Also, any care provided at Grady has to be based on solid evidence.
I am not suggesting that Grady is perfect.
It has many flaws that come with underfunding, and many challenges that come from caring for the uninsured.
Yet, at Grady, an effort to disregard science will be shot down fast.

The technical term for millions of people like Edna Riggs is the
underserved.
Edna didn’t receive medical care until the manifestations of her disease became catastrophic.
Another of my breast cancer patients—Helen Williams—started out on the opposite end of this scale.
She had the most advanced care Atlanta had to offer.

*

IN
1990, Helen, then fifty, finds a lump in her breast.
Without delay, she goes to her gynecologist, who sends her to get a mammogram.
The tumor can’t be seen on the image, but the gynecologist does the right thing.
He refers Helen to Luther Smith, one of the best-known breast-cancer surgeons in the Southeast.

Smith performs a needle biopsy, which leads to the diagnosis of breast cancer.
The tumor looks aggressive under the microscope.
Though scared, Helen reminds herself of her good fortune.
She is married, her kids are grown, her job benefits at a financial-services company include excellent health insurance, and she is discerning enough to demand the best treatment modern medicine can provide.

The tumor turns out to be four centimeters in its maximum size—quite large.
Altogether, twenty-one lymph nodes are resected, and all prove negative.
This means that the disease may not have spread.
The biology of the tumor is worrisome.
It’s estrogen-and progesterone-receptor negative, meaning hormonal therapies cannot be used.
Hers is the sort of high-grade, aggressive disease that is more likely to occur in black women than in white women.
This mixed bag of good and bad characteristics translates into the diagnosis of Stage II disease.

Helen is offered a choice of surgical procedures: a lumpectomy and radiation or a mastectomy.
She chooses mastectomy.
The insurance company doesn’t object.
The company also pays a plastic surgeon to rebuild the breast.
She is offered postsurgical chemotherapy.
Insurance agrees to pay for this, too.

This scary time has a special meaning for Helen, who had witnessed the civil rights movement and integration transform Atlanta in the sixties, seventies, and eighties.
Here she is, a black woman in the South, getting Cadillac care.
She feels fortunate.

Smith, the surgeon, refers Helen to his favorite medical oncologist, Norman Kuhn, who is known for an especially aggressive approach to treating breast cancer.
The oncologist explains that a stronger dose of chemo is better than a weaker dose.
“More is better” has been a hallmark of the oncology profession since the 1950s: the more chemotherapy you administer to the patient, the more effective it is in terms of killing the disease.

Kuhn has treated a lot of breast cancer, and he favors a take-no-prisoners technique for “adjuvant”—postsurgical—therapy.
This is a procedure in which we give chemotherapy drugs after surgery to eradicate cancer that was too small to be seen by the naked eye in the surgical area, or too small to be seen with radiological imaging if it has spread to the distant organs, including the liver, the lungs, and the brain.

The oncologist’s plan for Helen’s treatment seems logically compelling: a high dose of drugs will be used to kill all the cancer cells that might be hiding in her body.
The doses will be so high that the bone marrow—an innocent bystander—will be destroyed.
It used to be that this much chemo would kill the patient, but no longer.
Doctors had recently developed an ingenious technique that enabled them to take the patient to the brink of death from chemotherapy, then—at the last moment—rescue her.
To save Helen from succumbing to the toxic effects of chemotherapy, her own bone marrow will be harvested and stored before chemotherapy and reinjected after the drugs complete their work.
This procedure is called autologous bone marrow transplantation.

Again, Helen feels fortunate to be treated by the best in the South.
These are doctors with impeccable credentials and reputations.
Would they have treated a black woman fifteen or twenty years earlier?
Now they treat her like any other patient.
She enjoys their courteous treatment—and she trusts them.

Kuhn explains that Helen’s insurance will pay for most of the cost of the transplant and chemotherapy.
The procedure requires hospitalization, but it’s usually just for a few days.
There will be some side effects.
Helen will lose her hair, but it will grow back.
She might feel tired for a while, and the risk of infections will be increased.
All of this seems to be a small price to pay for the security that comes with Kuhn’s promise to make the cancer go away forever.

Given these arguments and that she and her husband trust the doctors and are satisfied with the care they are receiving, Helen agrees to the transplant.

Helen checks into a private hospital, which she knows didn’t integrate until 1980.
There, she is taken to the OR and given general anaesthesia.
She wakes up three hours later with a bandage over her upper buttocks and her bone marrow harvested.
It will come to the rescue after the chemotherapy eradicates the disease.

Helen returns to the hospital ten days later, after some wound healing.
High-dose chemo is about to start.
She is put in a private room where no flowers or raw vegetables are allowed.
(They might have infectious agents on them.) The next morning, a central line is inserted into the subclavian vein in her right upper chest.

Helen and the nurse starting the first infusion joke about how this feels similar to an execution by lethal injection.
However, Helen quickly reminds herself that the cocktail of poisons she is about to receive will kill the cancer, not her.

Infusions cause unease.
Even twenty-four hours after treatment ends, she has nausea.
Five days after getting the chemotherapy, it has washed out of her system.
Her white blood cell count and platelet count start to fall.
The harvested bone marrow is thawed and infused into her subclavian vein.

The side effects Helen experiences are far more severe than she expected.
She is unable to recall most of them having been described to her prior to the procedure.
She has nausea, vomiting, diarrhea, dehydration.
Her marrow is slow to reimplant and start producing.
She has bleeding caused by a low platelet count and severe anemia.
She has both gastrointestinal bleeding and bleeding from the incisions made to harvest her bone marrow.
She has mouth and gum problems.
She has cardiac-rhythm problems.
She has a change in mental status due to electrolyte imbalances.
She has a respiratory arrest and is put on a ventilator.
She develops pneumonia.
She has a tracheotomy.
Altogether she spends five months in a hospital, only to be discharged to a rehab hospital.
Helen survives it all and returns to work nearly a year after leaving for the bone marrow transplant.

Three years after her discharge, she reads a news story about randomized clinical trials that showed that bone marrow transplantation for breast cancer doesn’t prolong survival.

At her next scheduled appointment, Helen brings up the trial results with her oncologist, Kuhn.
Yes, the results are disappointing, the oncologist concedes.
Though he still believes that transplants are beneficial in some cases, he is no longer performing the procedure, he says.
Mostly, he stopped because the media has unnecessarily scared the patients, and insurance companies are declining to pay.

Helen asks whether her transplant had been performed as part of the clinical trials that showed that the procedure didn’t work.
Being part of the group of women who helped science learn the truth would have made her suffering worthwhile, Helen reasons.
It wouldn’t be too different from getting clubbed in a civil rights march.

No, says Kuhn.
He didn’t participate in trials.

This is abrupt and puzzling.
Why had she been subjected to a devastating procedure when no one—including her doctor—could say with certainty whether it worked?
Why wasn’t she told about this uncertainty?
As far as she could recall, Dr.
Kuhn sounded quite certain of his facts when he described the procedure.
Was it possible that she was duped?
Was it possible that she had nearly died to help her doctor and various Atlanta medical institutions accumulate wealth?
More important, why hadn’t she been told the procedure was unproven?

“Why did we do this?”
she asks Kuhn.

“This was what everybody was doing at the time,” he responds.

This answer is more or less correct.
Many breast-cancer patients and their physicians had been unwilling to take chances on anything less than a transplant.
They thought that more would automatically mean better.
Fundamental scientific questions—such as determining whether the procedure was beneficial—were conveniently sidestepped in the day-to-day practice of medicine.

The amounts of money that could be made by doctors and hospitals didn’t foster skepticism.
Each transplant procedure cost at least $150,000 when it became commercially available.
Later, the price was knocked down to about $60,000, roughly the price of a luxury car.
Complicated cases such as Helen’s were worth $1 million or more in medical services.

As the government was trying to control aggregate health-care costs, hospitals were finding that transplant programs were allowing them to recoup some of the lost revenues.
Since the transplanters were using approved drugs in a new way, the Food and Drug Administration didn’t need to be consulted.

It was a fine business opportunity, and one company—Nashville-based Response Oncology Inc.—offered to set up transplant programs at community hospitals.
Setting up the program required a few hundred thousand dollars and a few days of training, but the payback was nearly immediate.

Regardless of whether they received transplants at Dana-Farber Cancer Institute or at a hospital down the street, patients were largely convinced that the approach worked, and many of them sued insurers for any effort to restrict coverage.
For years, well-meaning people throughout the United States held community bake sales and charity raffles to raise money for a bone marrow transplantation for a breast-cancer patient in their midst.
These friends and neighbors had no idea that they were helping some doctor get rich on an unproven procedure that harmed the patient.

The numbers of women who were unwittingly, unnecessarily—and, yes, fraudulently—harmed by this procedure is staggering.
Between 1989 and 2001, at least twenty-three thousand women underwent the procedure outside clinical trials.
Some estimates are much higher—thirty-five thousand to forty thousand.

Meanwhile, only a small number of American women—fewer than fifteen hundred—received this treatment in randomized clinical trials.
These trials had a difficult time finding enough patients who were willing to take a chance of being assigned to standard treatment.
Yet, after much hard work, the trials were completed and presented at the plenary session of the 1999 annual meeting of the American Society of Clinical Oncology in Atlanta.