Fighting for treatment

These days, having cancer isn't enough to get you into the hospital -- you have to really be sick.

Published October 24, 2000 7:30PM (EDT)

Could anything be worse than coming to see the doctor about a sore throat and finding out that what you have is not a sore throat at all but an aggressive, malignant tumor?


What's worse, far worse, is finding out that you have a malignant tumor and not being admitted to the hospital then and there because the doctor is unwilling to play the elaborate intake game -- leaving you on your own to negotiate the Kafkaesque system to arrange diagnosis and treatment. Because even if you have a deadly cancer and great insurance coverage, the doctor must provide an airtight excuse to slip you in past the bean counters and case reviewers. Otherwise you can waste a couple of your last precious few months trying to force your way through a healthcare labyrinth that is blind and deaf to your suffering.

On a recent and relatively calm night in the emergency room, I picked up the chart of a 55-year-old woman complaining of a sore throat. According to the triage nurse's notes, the patient had just finished a course of the antibiotic Biaxin, but her throat remained swollen, which suggested a viral infection or a resistant strep.

I entered the examining room to find a diminutive Asian woman -- probably Cambodian, judging from her 14-letter, five-syllable last name -- accompanied by a slender daughter and the girl's boyfriend. I ran through a few perfunctory questions. The patient answered in broken English, with an occasional assist from the kids: Fever? Cough? Trouble breathing? No, no, no.

Smoker? No.

Open wide.

Most adults don't open their mouths properly. They bunch their tongue up toward the palate, blocking the view of the tonsils, and this woman was no exception. Even before I reached for my tongue depressor, I noticed a bulge where the woman's left tonsil should have been. My interest ticked up a notch: a possible peritonsillar abscess. Sometimes a strep infection can escape the antibiotic assault and grow into a pocket of pus in the lymph tissue behind the tonsil, creating a potential hazard to breathing.

The abscess can be drained easily enough with a sharp needle jab, as long as care is taken not to puncture the internal carotid artery, millimeters away. A tiny mistake can result in massive bleeding and a howlingly disastrous surgical emergency. This is the kind of fun procedure that ER doctors salivate over: a quick fix, an element of danger, topped off by the patient's admiration and heartfelt gratitude.

But as I positioned my stick and coaxed her tongue away from the roof of the mouth for a better look, I saw, instead, an angry red mass the size of a golf ball hovering over her larynx. No abscess, a tumor: Nothing else occurred to me. As I pulled back, trying to compose my face, I brought my hands up to feel the sides of her neck. There it was again on the left, just inside and underneath her jaw.

I launched into a new string of questions. You don't smoke? No, you told me that already. Fever? No, you answered that, too.

Have you had TB? The daughter and boyfriend looked at each other, then at the woman. She smiled, uncomprehending. Huh? TB? A quick huddle with the kids: didn't think so. I kept probing along her neck from the center of the bulk to the margins. The ball felt firm as wood.

Do you do a lot of gardening? Work as a florist? No.

Damn. She'd just ruled out a diagnosis of sporotrichosis, a definite long shot but the last soothingly benign explanation. I leaned back, sadly regarding her deferential smile.

How long have you noted the swelling? Two weeks.

No more than that? Are you sure? No, just two weeks.

Bad answer: This monster was growing rapidly.

No trouble breathing in all that time? No, none.

I knew what I had to do next: call an ear, nose and throat specialist. I hesitated because, well, they can be trying. After taking an hour or so to respond to a page, they usually want to know just one thing: Is the air passageway obstructed? If not, send 'em to the office in the morning. If yes, intubate and admit to ICU and they'll see the patient the next day. The most common reason for an ER call is uncontrollable nosebleeding -- a messy, unpleasant affair. So from the ENT doctor's point of view, the ER calls with nothing but trouble.

Worse still, I had on my hands an uninsured patient who might need surgery. There's no overemphasizing the callousness of modern medicine when it comes to patients with no money and no resources, and I feared I'd have to discharge this woman with little more than an empty promise that someone else would see her in a day or two.

Why empty? Because on-call doctors are pros at rigging the game against uninsured patients. Here's how it works: Hospitals receiving Medicare and Medicaid are legally bound to treat all patients -- insured or not -- who turn up at the door. To fulfill this obligation, the hospital enters into an elaborate bargain with specialists. The facility grants them lucrative admitting and operating room privileges; in exchange, the physicians agree to be on call occasionally and treat patients who appear during that shift no matter what their financial circumstances.

On their call day, they have to take all comers, most of whom are uninsured or on Medicaid, which generally pays less than private insurance plans. If the patient needs surgery or immediate treatment, the doctors have to rush to the hospital. If the problem is manageable on an outpatient basis, the specialist is supposed to grant them at least one office visit. But patients discharged with just a name for follow-up often end up right back in the ER in a day or two, unable to make an appointment in anything less than weeks or months. Even fully insured patients can be given the runaround, but their chances of gaining a physician's sympathy are better.

Young doctors just out of residency training happily grab lots of call days for a couple of years so they can establish a reputation with the physician community and build a valuable referral base. In time, the referrals for insured patients pile up, superseding their interest in hits from the ER. That's when they get a little testy about what they see as our 'dumping' patients on them.

One of the first things I do upon starting a shift is scan the call list to see who's on: the good, the bad or the ugly. The ENT doctor on call this particular night was an unknown entity. I recognized his name, but I had never called him before. He returned his page quickly -- an unexpected but positive omen -- and asked, as I knew he would, about her airway.

Please understand: I am willing to lie. It may be in a patient's best interest for me to paint a bleaker picture simply to facilitate admission to the hospital or, at a minimum, to lure the on-call doctor in to make an evaluation. Although this woman was breathing comfortably, the easiest way to force the ENT doctor's hand would have been to report that her trachea was in imminent danger of obstruction. The downside of presenting a false clinical picture is that when they come in they'll think I was either lying or stupid -- and they'll remember it the next time I have to call. So I use this tactic sparingly.

Since this ENT guy had responded so promptly and sounded concerned, I decided to tell the truth. I said she was breathing fine but that the mass was huge and had erupted in a mere two weeks. He mulled it over for a moment. Then he asked me her name and performed the doctor's version of racial profiling. "Southeast Asian?" he said. "High incidence of oropharyngeal carcinomas in that population."

Uh, oh. No way out.

"So you want me to send her to your office tomorrow?"

This was a defeatist's question. Fifteen years ago, during my training, it would have been unconscionable for me, or anyone, to toss a patient back into the street with a diagnosis, or even a suspicion, of cancer. But now compassion -- the system's not mine -- competed fiercely with the bottom line.

Once again, the ENT surgeon paused and considered my question. "If her airway's not obstructed ... Well, let's get as much of the pre-op studies done now as we can, though, and see what we've got. Is that OK?"

It was more than OK: He was obviously going to look after her very carefully. After running down a list of baseline labs to order, he gave specific instructions to get a CAT scan of her neck area.

I returned to the patient and her family and admitted that while I didn't know what the mass was, it could be something bad. A specialist was already involved and might be in tonight, tomorrow at the latest. I couldn't tell her anything more until after the scan. I spoke slowly and accompanied my speech with a lowered gaze, a lot of sighs and meaningful eye contact: The classic shorthand way to convey that it was bad-news-with-worse-coming.

They met me sigh for sigh, lowered gaze with lowered gaze. They understood. The woman again offered me that lovely smile.

An hour later, I found the ENT doctor and radiologist in the CAT scan suite, film hanging on the light-box. They were standing before the mosaic of black and gray images, silent in the way that only means careful calculating, weighing, studying: sarcoma or lymphoma? high grade or low? pushing up against normal structures or chewing them up?

"How bad?" I asked.

They turned to me, startled at the interruption. "Oh, hi," the ENT guy said, shaking my hand and introducing himself. He pointed out what looked ominous on all the images: an unnaturally round black-gray sphere. If he had to guess, he'd put lymphoma at the top of the list, an undifferentiated sarcoma next, perhaps thyroid carcinoma third. Bad, worse, terrible. TB would have been nice, under the circumstances. He sighed deeply. "But it's not TB."

He'd give her maybe six months. He said it as if he knew for sure.

As we walked back to the ER, I asked about the surgical options. "I could take it out, but these bleed like stink," he said. "It's better to do a small needle-biopsy to get a tissue sample and then let chemo shrink it down. I'd really hate to operate on it. Her airway's OK, right?" I told him again it was. "Yeah, you only go in after these if she's going to obstruct."

Meaning if it's going to choke her before it kills her.

I didn't accompany him into the room and didn't ask afterward what he'd told them. I simply thanked him. It was reassuring to know that someone with cancer and no money could still get admitted to the hospital right away. He smiled and shrugged. "You know," he said, "I think you were wrong about that airway. It is compromised. She's retracting a little." He shot me a significant look as he said this.

"What? No, she's ..." I paused. "Oh, yeah. That's right. She was working a little hard to breathe, wasn't she?"

The utilization reviewer would never allow the hospitalization otherwise. The ENT doctor would be counseled about a 'bad' admit and he'd have to watch himself a bit more carefully in the future. So, yes: She had respiratory distress.

A day later, back in the ER, I scanned the on-call roster at the start my shift. The same ENT guy was listed. I asked the secretary to put in a page. Again, he answered promptly. I was really beginning to like this guy.

Any news?

The needle biopsy had been performed that morning, he told me. Lymphoma, as he had guessed. Aggressive, invasive, ugly. Probably six months, like he'd thought. He was lining her up for chemo to shrink it so it wouldn't compromise her airway. However long she lasted, and whether she died at home or at the hospital, we both knew it would be a nasty death.

"When it's my turn," he said, "just give me a six-pack and a fishing rod."

By J.B. Orenstein

J.B. Orenstein is a physician practicing pediatric emergency medicine in Fairfax, Va. His writings have appeared in the Washington Post, Annals of Emergency Medicine and Pediatrics.

MORE FROM J.B. Orenstein

Related Topics ------------------------------------------