How We Do Harm (25 page)

I don’t understand how any pharmaceutical company could believe that suramin could make a plausible drug.
Yet Parke-Davis did.
It took extraordinary courage as well as a deep denial of reality for the company to file an application for suramin after a clinical trial had shown that patients on placebo were living longer than patients receiving suramin.
On October 1, 1998, the FDA’s advisers voted 10–0 against approval of the Parke-Davis application, and the agency accepted their recommendation.

Meanwhile, NIH honored Conte’s memory.
A building housing child health and neuroscience research now bears his name.

“Isn’t it ironic?”
says his daughter Michelle.
“He died of complications to the brain and they name a brain-research building after him.”

Chapter 17

The Quintessential American

I AM AT THE ATLANTA AIRPORT,
picking up phone messages that piled up while I was in the air.
The volume of calls is insane, and not all of them are interesting.

I get a lot of internal ACS policy inquiries.
What should we say about an issue that’s about to come up in Congress?
Do we jump in now, do we wait a bit, or do we stay out?
A lot of calls deal with ethics issues.
Should employee X be allowed to do outside consulting?
What if it’s without pay?

I get calls from Capitol Hill aides, off-the-record, because the senator wants to understand the issues before mouthing off.
Then there are calls from reporters; a few of them have my cell phone number.
Sometimes it’s about a story.
Other times it’s about Grandpa in Tennessee.
He has prostate cancer and needs to see someone good.

My rule in triaging calls is to put patient-related matters first.
(In this hypothetical lineup, the reporter with the sick grandfather in Tennessee gets my callback first.)
And when a message starts “Dr.
Brawley, Alan Rabson suggested that I call…,” this is all I need to triage this call to the top, even above the old guy in Tennessee.
This is my opportunity to practice medicine in its pure form, to save someone from the jaws of the system, to stop a medical travesty, maybe even save a life.

On an average day, my work has internal logic, intrinsic flow.
There is legislation to track, reporters to set on the path of seeing the world as it is, advocates who need to be reminded that the rules of evidence don’t change.
Alas, this flow of activity makes it easy to forget that my business is about helping people.

One of the greatest honors a human can bestow upon another is to say, “Can you help me?”
When you do help someone, you get an incredible feeling of satisfaction.
When you make a big difference, you get a high.
Al Rabson helps me experience this satisfaction.

Al is a superb pathologist, a retired admiral in the Public Health Service, a veteran of more than half a century of combat against cancer.
Even now, in his eighties, he retains the title of deputy director of the National Cancer Institute.

I worry about Al.
His wife, the NIH scientist and administrator Ruth Kirschstein, died of multiple myeloma recently.
They were a power couple.
They lived for their work, but with every subtle movement showed how much they cared about each other.
I worry about how long Al will last without Ruth’s calm, determined presence.

Aging has not been kind to PHS’s Rear Admiral Upper Half (ret.) Alan Rabson.
He needs a walker to get around and is mostly confined to the redbrick, two-bedroom, government-owned house behind the tall fence of the NIH campus.
In his decline, Al hasn’t been relying on friends.
Few have been ushered in to see him.
Mostly it’s “the practice” that keeps Al going.

The practice began in 1955, when he came to NCI following a pathology fellowship at Tulane University.
The way Al tells it, shortly after he moved into his office, the phone rang.
The call was from a woman he didn’t know.
He isn’t even sure how she got his name, but he does remember her question: “I have breast cancer.
Whom shall I go to see?”

“I sent her to a doctor I knew, who did a lot of breast cancer,” Al recalled recently.
“And because I was at the Cancer Institute, I knew a lot of people.
And I read widely, so I knew who was doing what.”

Word started to get out that a knowledgeable doctor at NCI was answering the patients’ questions—and that you could call him as often as you needed to.
The scenario is always the same: a voice on the phone stumbles through the words on the pathology report.
Al hears this halting, stuttering speech, and the words have an effect that can best be portrayed in a comic novel: an imaginary light flashes, and a tumor appears in a bubble above Al’s head.

“As a pathologist, I can see the tumors in my mind.”

He explains the tumor, describes the course the disease will take, lists the options for interventions, the rationale, the hope.
Al is always hopeful—more so than I—because hope is better than the alternative, and because he is a better man than I am.

Al doesn’t care whether he is being asked to help a multimillionaire news anchor, a US senator, or an immigrant taxi driver.
“They are fellow humans, and I usually don’t inquire too seriously about whether they are human,” Al said recently.
“Usually, I find out who sent them to me, out of curiosity, not that it matters.”

As he provides a referral, Al makes sure that the patient knows that the first phrase out of his mouth should be “Al Rabson suggested that I call you.”

“Of course, I never refer without telling them that they can say that I sent them,” Al said.
His list of doctors is enormous, and he knows how each of them thinks.
That’s because he trained many of them.
He gets feedback, too, as patients from his practice call back to check in and tell Al how their treatment is going.

“I try to find something not too far away, but also someone who is good.
I won’t send them to anyone unless I trust them.
I give them names.
I say, ‘You can go talk with them, see if you are pleased with them.’
But in the end, they will have to make their own decision.”
Sometimes, Al admits, when a patient is about to make a choice he disagrees with, he nudges along with pointed questions, Socratically.

A referral from Al gets you an appointment immediately—and you get a callback from the doctor rather than a nurse or a clerk at the appointment desk.
This is in part because the doctors on his list see his practice as a kind of guaranteed safe passage for the lucky few who stumble upon Al, and in part because all of us want to remain on his list of good docs.

A patient can call Al again and again, as often as necessary.
It’s illegal for Al to charge for his guidance, not that he would want to.
Asking whether there is any way to return the favor earns a chuckle of the sort only an impish Jewish man can produce.
I think it means Al wants you to return the favor by living a long life and being kind to others, but this is left unsaid.

No one knows how many people have benefited from Al’s guidance.
He gets at least one call per day, sometimes three or more.
Nothing is logged, and no notes are kept.
Assuming one call per patient per day, including weekends (a fair assumption), over fifty-five years, you get 20,075 patients.
The actual number is certainly much larger.

In a conversation recently Al said that he worries about succession.
His practice is about personal contacts, and about the quality of specialists on his list.
He knows who is good, he knows whom to avoid.
“I’ve been at the cancer institute for fiftysomething years, getting to know all these people, many of whom have gone on to fame and glory,” he says.
“Who else would have training like that?
I can’t give that to anybody.”

*

I
return the call.

It’s from a scientist at NIH.
His sister, who is in her midforties and lives in Atlanta, has early-stage colon cancer.
He says simply, “My sister is seeing some doctors, and she needs help in assimilating what she should be doing.
Would you talk to her?”
In retrospect, I realize that trepidation was in his voice, but this is not at all clear in the moment.

“Would she be interested in talking to me?”
I ask, because sometimes people want you to intervene in cases where intervention is inappropriate.
The patient has to want to initiate contact and want to hear what you have to say.

“Can I give you her phone number?”

“I don’t want her phone number,” I say.
“You give her my cell phone number, tell her to call me, and it’s best to call me after six p.m., because that way we can sit down and spend some time talking.”

I am under the impression that she needs to make some decisions, that she has some questions.
Cancer is hard to understand, and doctors rush patients.
Most of the time, helping Al Rabson’s patients means slowing them down long enough so they can understand the treatment choices.

I get a call at 7:00 p.m.
the next evening.
I am at home, helping my daughters, Laura and Alison, with their homework.
My kids have gotten used to seeing Daddy giving them time and then, all of a sudden, getting called away to do something patient-related.
When this happens, I go to my basement office so they don’t hear any of the details.
This protects the kids and the patients’ confidentiality.

My basement office is my favorite place in the house.
My two computers are there, sitting on two computer desks.
One of the computers has two big screens; it’s there to let me write, check my e-mail, and listen to a Washington news-radio station I like.
(I haven’t switched my news junkie’s loyalty to Atlanta stations.) My second computer gets used exclusively for doing lit searches when I write.

The scanner and three printers—the color printer, the photo printer, and the laser printer—are in the basement office, too.
I am a techno fiend, so everything is networked.
There is also a fully extended, Danish, teak dining-room table, which I bought at a Washington furniture store called Scan some thirty years ago.
(I was single at the time; Yolanda favors more traditional designs.) The table is covered with objects that rule my everyday life.

The heavy-duty stapler is there, prominent, indispensable.
More important than the stapler is my eight-inch-thick pile of classic papers on cancer screening.
I refer to them regularly, and they are dog-eared to various extents.
They are not in any order, but I know how to find what I need.
There is also a pile of papers I intend to read if I ever get the time, and a pile of receipts I need for preparing income taxes.

Since the surface of the table is full, journals and books end up on the floor.
They are in neat piles, but they are on the floor.
The kids don’t come in because they don’t want to knock over the piles.
The place is not a mess, just full.
I clean regularly.

My favorite artwork is here, too: the crocheted portrait of me that Helen Williams made when I was treating her, and a poster of Robert F.
Kennedy sailing a small boat off Cape Cod.
I love the image and the RFK motto beneath it: “One man can make a difference, and every man should try.”

With my cell phone in my ear, I settle into a comfortable desk chair and listen to the young woman on the other end.
Her name is Debbie Kurtz.
As she speaks, my mind constructs the image of her as a together forty-seven-year-old woman with a big mane of curly hair.
She lives in Sandy Springs, a new-money Atlanta suburb.
I imagine her in a silver Range Rover, driving kids to soccer games.

We go through the usual dance steps.
She is polite, but it’s clear that the honorific doesn’t intimidate her; she is comfortable with access.
“Dr.
Brawley, thank you for talking to me,” and so forth.
I do my usual, telling her not to call me Dr., I go by Otis.

I ask her what’s going on, and she tells me that she was diagnosed with Dukes’ A colon cancer.
I breathe a sigh of relief.
Dukes’ A is early disease.
Chances are, this woman will be around for years to come.

She tells me that she is looking at all options to make sure that the cancer doesn’t come back.
She tells me who operated on her.
I know the guy; she is in an excellent referral network.
The surgeon, John Mason, is not an academic, but he is fine.
An interesting inequity exists in medicine.
Academic doctors generally don’t refer patients to nonacademics, while nonacademics refer to academics all the time Some of us think that nonacademics aren’t as good as us, not as up-to-date on literature.
However, some great docs only see patients, and Mason is one of them.

I ask how she was diagnosed, and she tells me that she had blood in her stools and got a colonoscopy.
A large polyplike mass was biopsied, and it showed adenocarcinoma.

We talk briefly about her and her background.
I see that Debbie is intelligent, motivated.
Early on, she lets it slip that she went to one of the Seven Sisters colleges.
She is educated, active, and has used her brain and connections to get the best care.
I see no reason to doubt anything she says.

She has her medical records in front of her.
I ask her to read the surgery report.
John Mason dictates a wonderful op report.
It almost merits a place in American literature.
As Debbie reads the notes, I can actually visualize the surgery.
Mason talks about a vertical incision through the skin, going through the layers of the abdomen, finding the bowel, isolating the area where the tumor is, clamping off both sides, resecting out the arteries and veins.
He talks about putting a barrier underneath the bowel, so the bowel contents don’t spill into the abdomen.
He talks about cutting the bowel and carefully removing it from the abdomen.
A great surgery beautifully described.

The pathology report is beautiful, too.
They dissected out a goodly number of lymph nodes: eighteen.
One way I know someone had good service is by the number of nodes analyzed.
If the path report says three of four lymph nodes, that means the surgeon didn’t do an adequate operation or the pathologist was lazy.
Debbie’s tumor on the pathology was just in the first layer of the bowel, which made it a low-stage disease, no vascular invasion, no invasion of lymphatics.
I am not as good as Al Rabson at visualizing tumors, but I can discern that Debbie had an excellent surgery and an excellent examination of pathology.