How We Do Harm (26 page)

The medical oncologist on the case is Dina Habib, a young doctor born in Egypt, but educated in US medical schools.
By the patient’s story, Habib was thorough and nice.
I agree with Dina Habib’s recommendation for follow-up: a colonoscopy in one year and a CT in six months and then annually, with blood studies every six months.
She suggests that the patient might want to talk to a genetic counselor, although with the lack of family history, genetic testing would not be recommended.

Habib noted that Debbie had low-stage, low-grade colon cancer, which has a good prognosis.
Habib wouldn’t give adjuvant chemotherapy, as studies show that adjuvant chemotherapy is beneficial for Dukes’ B2 disease, but not for Dukes’ B1.
Debbie has Dukes’ A, which is an even better stage than B1.

I am delighted to hear the wording Dina Habib used.
Any doctor can simply say, I will not give you adjuvant chemotherapy.
What Dina did was actually explain what the scientific answer is: don’t do it.
Dina must have taken extra effort for this patient.
Your average oncologist sees twenty to twenty-five patients per day.
To say “You don’t need chemotherapy” takes fifteen seconds.
To explain why chemotherapy is inappropriate is a ten-minute conversation.

I am hearing these things, and I am thrilled.
This is medicine being practiced the way medicine ought to be practiced.
The forces of good got mobilized, and the forces of good did good.

As I hear all this, I think that Debbie is calling me to affirm that she is getting good care.
I am ready, indeed eager, to affirm this.
But that, I soon discover, is not Debbie’s intent at all.
She tells me that she has done some reading and knows exactly the studies that Habib was quoting, but has decided that she needs to do everything possible to kill any possible tumor cell left behind.

“I have to be absolutely certain,” Debbie says to me.
“I have a thirteen-year-old son and a nine-year-old daughter.
I have to stay alive for them.
I am not—not—taking any chances.”

I have some thoughts on this form of reasoning, but decide to keep them to myself, at least for now.

Then she tells me that she returned to Dr.
Habib to convince her to give chemo.

“What did Dr.
Habib say?”

“Oh, the same thing.
That chemo is not called for.”

I hear frustration and contempt in Debbie’s voice, which makes me wonder whether she is able to accept medical advice that is contrary to what she wants to hear.
Could it be that she is unable to take advice from an Arab woman?

“And?”
I prompt her, disappointed by the realization that a good story has gone sour.

Habib tells Debbie that she stands to lose more than gain from chemo, that studies show no benefit from chemo in this setting, while the harms are well defined.
Then Habib goes through the long list of known harms, concluding with the statement—one that I wholeheartedly agree with—that administering chemotherapy would constitute medical malpractice.
In other words, no, no, no, and no!

Habib doesn’t bill Debbie for this appointment.

I am still thinking, “This is good, really good.”

*

IN
her quest for certainty, Debbie goes to see Hugh Wallace, a well-known physician in the Atlanta area, a socially prominent man who gets a lot of breast-cancer chemotherapy business.
Since I don’t have much respect for Wallace, his recommendation to Debbie takes me by surprise.
It’s almost the same as Habib’s—minus genetic counseling.
On the chemo issue, he agrees 100 percent with Habib.
Wallace says that if Debbie insists on the genetic tests, he could arrange them, but the tests would be a waste of time and money.

By this point, I’ve heard enough to see that the story is getting more ominous.

“So I started crying and begging for adjuvant FOLFOX,” Debbie says.

This is shocking.
FOLFOX is extremely toxic, which means that you better be sure that the patient stands to benefit from this stuff before you crank up the pump.
To start out with, it will cause hair loss, nausea, vomiting, neuropathy, possibly even burning pain in hands and feet.
Long-term consequences are even worse: leukemia.

I say nothing.

“Eventually, he saw it my way,” Debbie says.

“Are you on FOLFOX now?”
I ask.

“Just finished my second course.”

I am devastated.
Debbie is a candidate for all the known side effects of FOLFOX and none of the benefits.
She is also a victim of being well insured and perhaps too sophisticated, but not wise enough.

I realize suddenly that Debbie is the quintessential American consumer of health care.
She has reviewed the science, and she has the capacity to understand it.
Yet, she chooses to disregard the facts in favor of creating the illusion of control.
Debbie is God’s gift to crooked and delusional practitioners.

In the 1980s and 1990s, patients like her used to sue the insurers who had the good sense to say that bone marrow transplantation was an unproven therapy for breast cancer.
When insurers relented and agreed to pay, all of us chipped in.
Costs increased our insurance premiums, but no one paid a higher price than the women whose lives were shortened or ruined by that horrendously toxic therapy.
This went on until 1995, until four clinical trials showed that the procedure was not beneficial at best and clearly detrimental at worst.

Where does Debbie get the idea that more is better and that some treatment—any treatment, even toxic treatment—is safer than nothing?
Is this idea so firmly implanted in society?
Has overtreatment become a feature of our national ideology, a land mine left from a misguided war launched with great fanfare only to fade away from national attention?

We have for so long run on the energy of fighting, beating the cancer, throwing everything at it, that this mentality has overridden common sense and science.

At first, I think that Debbie is rejecting the scientific process and the scientific method.
Then I realize that you have to know what the scientific method is in order to reject it.
Polo used to say that the word
ignorance
comes from the Latin word
ignarus.
“Gentlemen, it means not knowing what you don’t know.”

I’ve seen
ignarus
in patients, and I’ve seen
ignarus maximus
emerge as the central element in policy debates about health care.
It scares me every time.
It makes debate impossible.
It makes education impossible.
It makes communication impossible.
All you can do is clash like senseless beasts, and I choose not to.

What can I do now?
I want to help Debbie, but how do you find a common language with someone who doesn’t believe in the scientific method?
What is her reason for calling me now, in the second month of horrible, useless treatment?
What is she seeking?
Approval or an opportunity to tell the story of what she surely saw as her triumph over the medical profession?

Rarely do I tell a patient what to do.
But since Debbie seems to thrive on exceptions, I make one for her.
I tell her that she is getting unnecessary treatment and is putting herself at risk.
I am the third doctor to tell her this, and I entertain no illusions that my warning would have any impact.
I’ve seen this scenario enough times.
Beliefs can’t be shaken out once they burrow in.
There is no point trying.
But I do.
I give Debbie the written articles that show that adjuvant FOLFOX helped some people with B2 disease and didn’t lower the relapse rate in B1.
She has seen those papers, of course.

I give her the science in greater detail.
I try to explain, again, what the science says.
I explain how we do the science, I give her the actual numbers, I point her to the Kaplan-Meier plot on one of the papers, we talk about five-year disease-free survivals, what her disease-free survival would be without chemotherapy.
The chances that the disease would come back are in the range of 5 percent, with no evidence that chemotherapy would push this downward.

This risk of recurrence doesn’t balance well against Debbie’s increased risk of leukemia, which goes up for fifteen years, peaking at ten to twelve years postchemo.
We can’t say anything beyond fifteen years because we don’t have the data.
Immediate side effects are considerable, too.
The oxaliplatin component in FOLFOX causes tingling in your fingers, often making it impossible for patients to dress.
Shirt buttons are especially a problem.
Patients getting oxali are told not to put ice in their mouths.
Ice causes burns on their sensitized mucous membranes.
The drug 5-fluorouracil, half of FOLFOX, has well-understood toxicity, which includes causing heart attacks.
I explain all of this to Debbie.

Debbie sounds happy even when I ask her to list the side effects she is getting: flulike symptoms, neuropathies, numbness and tingling in the hands and feet, nausea, vomiting, hair loss.
My mental image of Debbie as a woman with a spectacular mane of curly hair is evidently wrong.
The mane, if she had it, is gone.

I understand that Debbie’s self-destructive course is set, but I also know that every dose of chemo increases her risk of leukemia and more immediate side effects.
Stopping chemo now would limit her exposure.
Also, the worse her neuropathies get during six months of chemotherapy, the less recovery she is going to get.

I offer to arrange a formal fourth opinion with a colon-cancer expert at Emory, but Debbie says she isn’t interested.

*

I
don’t break off the relationship.
I get her phone number and ask her to call and update me on her progress.
I offer to arrange consults.
Debbie calls me four months later to tell me that she has completed the six months of adjuvant chemotherapy.
Most of her side effects have resolved, but long-term risks are still there.

I run into Wallace at a local continuing-medical-education meeting and ask him whether he was giving adjuvant chemotherapy to a woman with Dukes’ A.
The patient’s name isn’t mentioned, but I fear that we may have violated privacy laws anyway.

Wallace acknowledges having treated a patient like that.
“The patient was really insistent,” he says.
“People like that get what they want.
If I hadn’t done it, someone else would have.”

I can’t accept this explanation.
It’s a classic justification for expensive, bad medical care.
It’s not different from saying, “If I hadn’t sold this person a gram of crack cocaine, somebody else would have.”

Wallace says something that sounds ominous: “It’s better for her if I give her adjuvant chemo than a lot of other people.
I can do it more safely.”

Sometimes you hear things that are so shocking that you want time to pause so you can hit a replay button, just to make sure you heard correctly.
Is he claiming that he can administer a commonly given regimen with greater safety than any other oncologist in Atlanta?
That’s absurd.

I know that Debbie was getting enough drugs to produce nausea, vomiting, neuropathy, and, with them, the feeling that she was getting her money’s worth.
Was Wallace giving her the Full Monty?
Was he giving her a half dose of FOLFOX?
Was he giving her a quarter dose?

The total cost of six months of chemotherapy would have been about $38,000 plus the antinausea and other supportive care medicines, which can more than double the bill.
My friends in private practice tell me that Wallace gets to put about $5,000 into the pocket of his practice just for FOLFOX alone.

Why would Debbie’s insurance pay for this abominable care?
The answer is simple: the insurance company knows only that Debbie has colon cancer.
By law, insurers aren’t given the stage of any cancer, which means that they have no way of knowing whether therapy is appropriate.

This is not a good situation: the patient knows the science but chooses to ignore it, the doctor chooses to line his pockets in spite of what he knows, and the insurance company has no access to adequate information.

Could anyone have prevented the harm that was done to Debbie?
In a standard small private practice, the answer is no.
The only person who stood between Debbie and Wallace was the nurse who administered the chemotherapy.
Occasionally, you hear stories of nurses who say, “This is ridiculous,” and refuse to carry out orders.
To throw this kind of challenge, you have to not mind being unemployed.

The only other check is the courts, which can step in when a patient is sufficiently dissatisfied to file a lawsuit.
Alas, the courts, too, have their own peculiar ways of dealing with science and the practice of medicine.

Some large oncology practices have instituted quality controls to curtail the irrational practice of medicine.
US Oncology, a conglomeration of practices owned by the gigantic health-care company McKesson Corp., requires doctors to enter their diagnoses into the computer system, and if the treatments they choose run counter to established guidelines, they have to justify their decisions.
Following that, US Oncology assigns another company doctor to review the justification and sign off on it.
This safeguard can’t be foolproof, in part because doctors tend to cover for each other, especially when clinical guidelines are broad and when the doctors’ objectives include meeting aggressive billing quotas.
Still, the requirement surely protects patients from bizarre therapeutic interventions.
Since US Oncology treats 17 percent of cancer patients in the United States, it’s good to know that these safeguards exist.

At academic hospitals, nurses and pharmacists have more power than at private practices, which allows them to challenge the doctors’ orders.
Most academic hospitals also require physicians to review the charts of patients handled by their colleagues, to make sure that their standard of care is reasonable.
However, that system, too, is vulnerable to abuse.
Academic institutions are political, and some doctors are too powerful to challenge.
(I believe that bad practitioners in academic institutions do eventually get caught, but it can take a while.)
Alas, the only remedy against a patient who insists on inappropriate care is to just say no.
To our detriment, that is exactly what our health-care system is so ill-equipped to do.