How We Do Harm (2 page)

In the exam gown, Edna’s chest looks surprisingly normal.
I ask how long she has had a “breast problem.”

She first felt something in her breast when her son was in second grade, she replies.
It has grown over the years.
She speaks correct English, not the language of the streets.
She sounds like someone who has had schooling, a person who reads.
Her hair is clean and combed, she is dressed neatly.

What grade is her son in now?

Eleventh.

I don’t react, not visibly.
She has known she had a problem for nine years—why did she do nothing?

I ask Edna’s permission to examine her.
She nods.
I ask her to lie down, my entourage gathering around.

I help her remove her right arm from the gown, trying to respect her modesty and preserve as much dignity as possible.
I undrape the right breast, or the place where the right breast had been.
The chest wall is now rugged.
I see yellowish, fibrous tissue and dry blood.
There is the unforgettable smell of anaerobic bacteria.
The wound is infected.

I reach for examination gloves.
I palpate her chest wall and feel under her armpit, looking for evidence of enlarged nodes.
After examining the breast wall, I look in the towel.
Her amputated breast could fit on her chest as if it were a puzzle piece.

I am not looking forward to Edna’s repeating her request to reattach the breast.
If she asks directly, I will have to say that this is not possible and explain why not.
My preference is to move slowly, to let her adjust, to make her comfortable with me, with receiving medical care for her condition.
I fear that she will get up, leave, and never return.
Fortunately, Edna doesn’t repeat her request.
Perhaps the magnitude of the problem confronting her is starting to sink in.

Edna’s breast cancer has been growing for at least nine years.
It’s unheard-of that cancer such as this would be anything but metastatic.
The disease has to have disseminated to her bones, lungs, brain, liver.
I feel a wave of frustration and anger.

Another day at Grady Memorial Hospital.
Here I sit, talking with a patient whom we would probably have cured nine years earlier, and today I will have to tell her that she has a terminal disease.

The rest is logistics.
I arrange for the pathology and radiology to get confirmation.
We always get pathologic confirmation of cancer, even when we are almost certain that it is cancer.
An old medical saying goes: “When you hear hoofbeats, think horses, not zebras.”
This saying has an important corollary: “You don’t want to be bit on the ass by a zebra.”
There is a remote possibility that Edna’s automastectomy was caused by leprosy or some unusual infectious disease.
It’s cheap and easy to get verification that it’s cancer.

I ask Bill Bernstein to talk with Edna, to take a full history, to perform a full examination.
The objective is to rule out neurologic problems from spread of the disease to the brain or spine, to look for other evidence of problems caused by the disease.

If you take me aside and ask why I’m withdrawing from the scene, I will say that I am trying to awaken Bill’s compassion.
But it is something else as well, something about me.
I am afraid of growing callous.
I acknowledge this readily, as a means of staving it off.
I am trying to avoid accepting the unnecessary loss of yet another life.
In the case of Edna Riggs, the abstract, scholarly term
health disparities
acquires a very real smell of a rotting breast.

I take my leave and, with the resident, start arranging tests to confirm the diagnosis and get Edna ready for treatment.
We will fight, even though we are going to lose.
Metastatic breast cancer always wins.
We have drugs to decrease pain and even make most people live longer, but we can beat breast cancer only when it’s caught early.

*

WE
admit Edna Riggs into the hospital, to get the tests done and to start antibiotic treatment of the infected wound.
We could have done the workup without admitting her, but I fear that she will leave the system as abruptly as she entered.
Psychological and emotional support are legitimate reasons for admittance, though most insurance companies and Medicaid would disagree.

As she starts to trust me, Edna tells me how frightened she was when she found a lump in her breast.
Right away, she knew it was breast cancer, and in her experience, everyone who got breast cancer died quickly, painfully.
Insurance problems kept her away from the doctor, as did the fear of dying.
She knew she would die after going to the doctor.
Several of her friends had.

Early on, Edna had some insurance, which didn’t do her any good.
Her employer wouldn’t let her take just two or three hours of sick leave to go to the doctor.
If she needed to take sick leave, she had to take it in increments of one day.
This guaranteed that an employee would exhaust all the leave quickly.
If Edna had been fired for taking time off after exhausting her sick leave, her three kids, too, would have lost support and insurance.

Acknowledging the physical problem and facing the consequences became increasingly difficult.
Edna tells me that she feared the disease, but she also feared the system.
Would the doctors scold her?
Would they experiment on her?
Would they give her drugs that caused nausea, vomiting, hair loss?
Would the hospital kill her?

Edna’s decision to stay out of the medical system was about fear: fear of breast cancer, fear of the medical profession, fear of losing the roof over her kids’ heads.
Fear intensified after her employer started to require copayments from workers who wanted to be insured.
This extra $3,000 a year made health insurance too expensive to keep.

Payment for medical services and sick-leave policies determine the quality of care we receive.
Several years ago, my research team at the American Cancer Society published data showing that people diagnosed with cancer who had no insurance or were insured through Medicaid were 1.6 times more likely to die in five years as those with private insurance.

In breast cancer, patients with private insurance were more likely to be diagnosed with Stage I breast cancer than those who had no insurance or were receiving Medicaid.

In colon cancer, too, the chances of catching the disease at an earlier, treatable stage were lower in the uninsured and Medicaid populations.

Even when the disease was found early, an uninsured patient did worse than one with insurance.
For example, an insured patient with Stage II colon cancer had better odds of being alive five years after diagnosis than an uninsured patient with what should be highly curable Stage I cancer.

Another study focused on emergency surgery to treat bowel perforation, peritonitis, or obstruction in colon-cancer patients under age sixty-five.
This surgical emergency was 2.6 times more frequent in uninsured patients than in those with private insurance.
Among patients receiving Medicaid, the odds of needing this surgery was 2.1 times higher than in those with private coverage.

ACS epidemiologists estimate that the lack of insurance annually costs eight thousand Americans their lives due to inability to receive cancer treatment.
Even controlling cancer pain is no small challenge if you are poor.
Uninsured patients cannot afford pain medicines.
The social programs that give them medication heavily ration pain meds.

Even if you have insurance that will pay for your treatment, you may still not be able to afford to receive it.

I have seen poor breast-cancer patients choose mastectomy (surgical removal of the entire breast) over a lumpectomy (removal of the tumor) because of employer sick-leave policies.
A woman who chooses a lumpectomy must also receive radiation, which has to be given daily, Monday through Friday, for six to eight weeks.
The treatment requires fifteen minutes in the clinic, but it’s done only during business hours.
Unfortunately, this less disfiguring treatment is hardly an option for a woman who knows that longer postoperative treatment will cause her to lose her job.

Most states have laws that require doctors to tell the patients that they have a choice of full removal of the breast or removal of the cancerous lump with follow-up radiation.
I do better than that.
I tell my patients that I believe that lumpectomy with radiation is a better option, as it is less deforming and likely to lead to less long-term swelling.

*

PATIENTS
most likely to have the worst outcomes are defined in a couple of ways.
Poverty is the biggest driver, followed by race.
(Race is complicated.
For now, let’s think of it as just another snippet of data collected from cancer patients, and delve into its significance later.)
Much of the problem is that poor people don’t get care that would be likely to help them.
The reasons for this are complex.
Perhaps they can’t get care, or don’t know where care is available, or they haven’t been offered insurance or steady access to care by their jobs or social services.

Here is the problem: Poor Americans consume too little health care, especially preventive health care.
Other Americans—often rich Americans—consume too much health care, often unwisely, and sometimes to their detriment.
The American health-care system combines famine with gluttony.

We could improve dismal health outcomes on both ends of the socioeconomic spectrum if we were simply faithful to science, if we provided and practiced care that we know to be effective.

*

EARLY
on, Edna ignored her tumor.
She accomplished this easily during her busy days, but not when she was alone at night.

The disease progressed relentlessly.
The lump grew.
Then the tumor broke through the skin, causing a gaping wound, which became infected.
The odor caused problems at work.
Edna tried to conceal it with body powder and cologne, which worked at first.
Her kids started trying to get her to come in and get help several months earlier, after a powerful, relentless stench finally set in.

Since Edna couldn’t pay for private insurance and have enough money left over to provide for her family, she had to come to Grady.
Officially, Grady treats any resident of the two counties that support it: Fulton and DeKalb.
When I arrived in Atlanta in 2001, the hospital was lax in enforcing the residency requirement.
It ended up being the hospital for poor people in many surrounding counties, even though only Fulton and DeKalb taxpayers paid.
As costs grew, Grady was forced to require proof of residency.

Our doctors are good, but free care comes at the cost of time lost waiting for appointments, waiting for tests.
You can spend an entire day waiting for a service that a private doctor’s office provides in fifteen minutes or less.
People like Edna, who need every day’s earnings and who can easily be jettisoned from their jobs, can afford time away from work even less than professionals, who may have some savings and job security.
So people like Edna wait until it’s impossible to wait any longer; they come to see us when it’s too late.

*

WHY
do black women end up with more aggressive breast cancer?
Is this due to some biological characteristic that correlates with race, perhaps even determined by it?
Can there be such a thing as white breast cancer and black breast cancer?
Could these be different diseases?

You have to synthesize a pile of statistical data and medical literature to get insight into these problems, but it’s worth the effort: You end up with extraordinarily valuable insights into the epidemiology and biology of cancer.
More than that, you gain insight into economic structures in our society and, ultimately, something very big: the meaning of race.

At a glance, breast cancer in a black woman like Edna appears to differ from breast cancer in an average white woman.
If you plot breast cancer on a spectrum from the worst prognosis to the best, a higher proportion of black women would wind up on the worst end.

One of the most ominous varieties of breast cancer is called triple-negative, because it is immune to three commonly used treatments.
The surface of the cancer cell in that form of the disease lacks receptors to the hormones estrogen and progesterone and is similarly devoid of receptors to the HER-2/neu protein.

We have drugs that target breast cancer through these three channels.
However, in triple-negative breast cancer, these drugs have nothing to latch onto, and all we can do is resort to desperate measures: harsher chemotherapies, which we know are frequently of little or no use.

About 30 percent of breast cancer in black women is triple-negative disease, compared to 18 percent in white women.

This disparity could appear to suggest a biological difference, but in fact it’s rooted in cultural, historical, and societal divides.
To understand this, we have to look at the potential causes of breast cancer in white and black women.

To start with, let’s consider the incidence of better-prognosis cancer among white women.
Instead of asking why black women are more likely to get more virulent breast cancer, let’s ask why white women are more likely to develop the disease that has a better prognosis.

The answer can be gleaned in part from the incidence statistics.

For the past three decades—or for as long as we have had a national registry—the incidence of breast cancer has been higher in white women than in black women.

In 2000, the National Cancer Institute’s Surveillance, Epidemiology, and End Results registry reported that during the previous year, blacks had an age-adjusted incidence rate of 125 per 100,000 women.
In the past twenty years, the black incidence rate has bounced between the low of 105 per 100,000 in 1989 to the high point of 126 in 2008.

In 2000, white women had an incidence rate of 143 per 100,000.
The breast cancer incidence rate in whites had risen from the 1970s, peaked at 147 per 100,000 in 1999, and has fallen to 129 per 100,000 in 2008.

The incidence rates were substantially apart over the past couple of decades, but have now nearly evened out.
Was this occurring because white women were using mammography more and were therefore more likely to get diagnosed?