One rarely looks to Senate legislation for literary
pleasures, but to me the 176-page bill known as S. 283, the Bipartisan Patient
Protection Act of 2001, a.k.a. the Patients’ Bill of Rights, offers the thrills
of a canny crime novel. Beneath the thick layers of legislative boilerplate
(“Subtitle A-Utilization Review; Claims; and Internal and External Appeals”),
the bill penetrates to the heart of a corrupt social structure with the
hypervigilant acuity of a Balzac, the passion and discernment of a Dickens.
In its definitional obsessiveness, in the precision of its
attunement to the slippery and evasive tactics of H.M.O. bureaucracies-the ways
they’ve devised to evade, delay and deny services to their vulnerable patient
clients-the bill paints a chilling portrait of the Kafkaesque nightmare so many
desperate sick people face in trying to get the care they think they’ve paid
for.
I became a supporter of H.M.O.-abuse reform such as the
Patients’ Bill of Rights-which Senate Majority Leader Tom Daschle just pledged to place first on the Democratic Senate’s
agenda-long before I became a patient. Though my recent spell as a hospital
patient has only strengthened my feelings about the fallacies of “managed
care,” I became a partisan of H.M.O. reform five years ago, when I came
face-to-face for the first time with one of the victims of managed care’s
callous mismanagement: a mother whose child had lost his limbs to
meningitis-induced gangrene because an H.M.O. 1-800-number telephone operator
had first denied them emergency-room care and then later-much too late to save
the child’s limbs-shunted them to a distant hospital because it gave the H.M.O.
a cut-rate 15 percent discount it wouldn’t get from closer emergency rooms.
This was down in Atlanta. I’d been interviewing Tommy
Malone, a brilliant medical-malpractice attorney who was one of the first to
see that H.M.O. abuses transcended the traditional doctor vs. patient
malpractice-litigation paradigm. Callous cost-cutting, profit-maximizing
H.M.O.’s-which were paying eight-figure salaries to their chief executives-were
putting doctors and patients on the same side, making them both victims of a
system that gives non-medically-trained bureaucrats power over the
doctor-patient relationship and offers cash incentives to deny the best
possible care-often to deny any care at all-to hapless clients.
It was in Mr. Malone’s office that I came upon, buried in a
600-page trial-testimony transcript, the
key euphemism, the defining euphemism
of H.M.O. abuse: “telephone triage.”
And it was in Mr. Malone’s office that I was introduced to
the victim of telephone triage in that trial, the mother of the child mutilated
by that H.M.O. euphemism.
Telephone triage :
H.M.O.’s don’t use this rather cold-blooded term in the warm, effusive
brochures they use to lure you into their all-enveloping managed-care paradise.
They never speak of triage at all. But it turns up in their internal memoranda
about cost containment, in the protocols they impose on their hotline
operators-the non-doctors who have the power to deny you emergency-care
authorization. “Telephone triage” is the cutting-edge euphemism, with the
emphasis on cutting . Telephone triage
is the tool H.M.O.’s give to non-doctors to cut you off from emergency care
when you call in the middle of the night desperately seeking it. And so this is
not just another horror story-this could well be your horror story.
Think of telephone triage as a game. A game which requires
you to find the magic words to unlock the gate your H.M.O. has set up to avoid
paying for emergency care it deems “unnecessary.” A game in which a non-doctor
who never examines you, never sees you, is routinely given the power to make
crucial decisions about whether you get hospital care in a situation in which
your life, or that of a loved one, is at stake.
Sometimes the game works out. Sometimes in the midst of your
desperation, if you’re lucky, you’ll find the right verbal formula, the key
words that fit the H.M.O.’s telephone-triage “protocol,” and the non-doctor
will authorize the care you need. And sometimes it just doesn’t work out at
all.
At 3:30 on the morning of March 23, 1993, Lamona Adams, a
young Atlanta-area mother with a 6-month-old child, woke up and saw that her
baby-who had been feverish for the past 24 hours-had suddenly gotten much
worse. She had a horrible intuition, one that turned out to be right.
“It was in the newspapers and on TV that meningitis had been
around the Atlanta area,” Mrs. Adams told me when I met with her. “And in the
days before, James had three of the five symptoms that they gave us in the TV
news-things to look for in case this happens to your child.”
Suddenly, in the hours before dawn, it looked like it was
happening to her child. Not only was he more feverish; what was worse, what was
really frightening, was his breathing: a rapid, panting, labored breathing that
she’d never seen or heard from him before.
Terrified by the specter of meningitis, the first thing she
did-as someone who’d grown up in an H.M.O. family in California-was to call her
H.M.O.’s 24-hour hotline, the one that had the power to authorize emergency
care. The first person she reached was an operator named Ernestine, who rather
than tell Mrs. Adams to rush her child to the emergency room, began to perform
telephone triage.
“Triage,” you’ll recall, is the term originally used by
wartime medical personnel to make the most of scarce resources, people and
supplies in the face of an overwhelming medical crisis-an epidemic, an
earthquake, a bombing. To triage is to separate the sick and wounded into three
categories: the ones who can most benefit from immediate attention by overtaxed
personnel, the ones who are beyond hope, and those who need care but can wait
until those in the first category are taken care of.
But there are two crucial differences between traditional
triage and the telephone triage being practiced on Mrs. Adams’ child by her
H.M.O. First, triage decisions have traditionally been made on-site, in person , by personnel trained to make
face-to-face, hands-on, life-or-death diagnostic decisions-most often real
doctors.
The second difference between actual triage and the telephone
triage practiced by H.M.O.’s is that the purpose of triage in the field has
been to maximize the life-saving effectiveness of limited personnel. H.M.O.
telephone triage has another purpose: to maximize the cost savings, and thus the profit margins, of the H.M.O., thereby
justifying cumulatively the skyrocketing salaries of H.M.O. chief executives.
The chief executive of Mrs. Adams’ H.M.O., for instance, took home $14 million
dollars the year she made her fateful phone call. Cutting down on the number of
“unnecessary” emergency-room admissions is one way to maintain the profit
margin that justifies the $14 million take-home pay for the chief executive.
Telephone-triage
operators and nurses accomplish this with a detailed protocol that defines what
conditions described by a caller over the phone justify an emergency-room trip
(as opposed to advice to stay home because the H.M.O. won’t pay your bill if
you go). The telephone-triage protocol also divides those in need of
emergency-room attention into more and less serious emergencies. Actually, it’s
more or less serious- sounding
emergencies. Callers who use certain key words to describe their condition are
authorized to call 911 or E.M.S. or to proceed immediately to the nearest emergency room. Callers who do not
choose their words carefully enough, or who do not happen upon the key trigger words in the protocol, are
slotted by the protocol into the kind of less urgent emergency care the H.M.O.
can better profit from.
Poor Mrs. Adams, she didn’t know the right words, the magic
words that would have gotten her baby immediate care. The mistake she made-a
mistake anyone could make-was in not using the magic words “difficulty in
breathing” in describing her baby’s panting. Later, much later, when the
H.M.O.’s triage operator and triage nurse took the stand at trial, the H.M.O.
witnesses were adamant on that point. They did nothing wrong, because the
telephone-triage protocol they were working from was extremely clear: If the
caller said there was “difficulty in breathing,” she could get immediate
emergency care for her child. But because Mrs. Adams described the feverish
breathing of her meningitis-stricken child as “panting”-because she said there
was a sudden difference in his
breathing rather than a difficulty
with his breathing-her child didn’t qualify. They couldn’t order immediate
emergency care at the nearest facility, because the protocol translated Mrs.
Adams’ attempt to describe her child’s breathing distress as just a fever.
As it happened, Mrs. Adams was right and the protocol was
wrong: Her child not only had meningitis, but a particularly virulent viral
strain that was at that moment coming close to stopping his heart. The protocol
failed. But rather than change the protocol, the H.M.O. argued that its personnel
had done everything right, everything according to plan-it was somehow Mrs.
Adams’ fault for not using the word “difficulty” instead of “difference” in
describing her child’s breathing. Rather than reform the system, blame the
victim.
The difference made in practical terms was heartbreaking.
Mrs. Adams wasn’t authorized to take her child to the nearest hospital as soon
as possible, which might have saved him from mutilation. Instead, she was told
to give the child a tepid bath and
see what developed. When an actual doctor finally checked in with the triage
nurse-not with Mrs. Adams-and learned that the tepid bath had not improved the
child’s condition, she authorized an emergency-room visit-but not to the
nearest hospital. Instead, Mrs. Adams, a newcomer to Atlanta, was told to take
her child to a hospital a full 45 miles away from her home-on a night when the
city was drenched with thunderstorms-because her baby still didn’t fit the most urgent triage-protocol category. And
because the distant hospital provided services to the H.M.O. at a 15 percent
discount.
And so they set out in a driving rainstorm: Mrs. Adams, her
husband and their child-still panting, feverish, hovering between life and
death. She’s holding her baby and seeing a change come over him, seeing him
fade. “I was yelling at my husband to go faster, but he says he can’t, the car
starts hydroplaning from the rain.”
They pass exit signs for hospital after hospital, searching
for the only one the H.M.O. authorized them to use. She’s worried, but the
telephone-triage operators have downplayed her fear, treated her son’s
illness-without seeing the child, of course-as if it’s just a fever and she’s a
hysterical mother.
“My son’s lying there,” Mrs. Adams recalled. “And he’s just
looking at me, and high fever is eating him up. I don’t know that he’s dying,
but it turns out he was actually suffocating-and when you think back on it, you
know, you say, ‘Oh, my God. We were going past all these hospitals ….”
At some point after passing the hospitals that could have
helped, but before reaching the one with the 15 percent discount for the
H.M.O., Mrs. Adams’ baby went into cardiac arrest.
“At that point, my son’s eyes closed. I didn’t know what was
going on was cardiac arrest. Fortunately, there was a hospital near” (not the
discount one), or the child might not have survived at all.
As it was, as a jury later found, because her child had been
denied immediate emergency care, the cardiac arrest combined with the
complications of the meningitis cut off circulation in the baby’s lower limbs
beyond hope of restoration. While his life was saved and his heart restarted,
the limbs could not be restored to use; they soon turned gangrenous, and to
save the child’s life, his arms up to the elbows and his legs up to the knees
had to be chopped off. He lives now propelling himself around on stumps,
painstakingly trying to learn to use them to do things other kids do with their
hands and feet.
How did you feel when you found out that they were really
sending you 45 miles out of your way because they had some discount deal going?
I asked Mrs. Adams.
“Tricked!” she said. “You know, you’re fooled.”
Tricked and fooled. That’s what I like about S. 283, the
Patient Protection Act: It’s so cannily and knowingly targeted at just those
slippery tricks and evasions H.M.O. bureaucrats use to triage their profit
margins at the expense of patient care.
Part of the reason I think the bill is so savvy and
detail-conscious is that much of the drafting was done by my new favorite
Democratic Senator, John Edwards. Although the two big-name sponsors of the
bill are John McCain and Ted Kennedy, its attention to the crucial minutiae, to
closing the bureaucratic loopholes H.M.O.’s use to escape responsibility,
reflects Mr. Edwards’ experience as a whiz-kid North Carolina trial lawyer who
went up against H.M.O.’s on behalf of children and parents before winning a
Senate seat in 1998. He knows where the bureaucratic bodies are buried.
No, S. 283 won’t solve all the problems of H.M.O. abuse, but
here are some of the things it does do:
When it comes to emergency care, to the kind of situation
Mrs. Adams faced, it mandates that if an H.M.O. “covers any benefits with respect to services in an emergency department of
a hospital,” it must provide coverage “A) Without the need for any prior
authorization” (i.e., bye-bye telephone triage), and “B) Whether or not the
health care provider furnishing such services is a participating provider … ”
(i.e., you can go to the nearest emergency room, not to the one with the best
price for the H.M.O.); and , per
subsection C, you can’t be charged extra for trying to save your life as fast
as you can.
Even more important, the
bill takes the definition of what an “emergency” is out of the hands of some
telephone-triage automaton with a paper protocol and defines it by the
“prudent layperson” standard: “the term ’emergency medical condition’ means a
medical condition manifesting itself by acute symptoms of sufficient severity
(including severe pain) such that a prudent layperson who possesses an average
knowledge of health and medicine could reasonably expect the absence of
immediate medical attention to result in … placing the health of the individual
in serious jeopardy …. ”
In other words, no more denial of care if you describe a
sick child’s breathing as “different” rather than “difficult.”
There’s more, much more, to S. 283. There’s the prohibition
against giving bonus compensation to doctors or bureaucrats for denying claims
or limiting referrals to specialists, a widespread H.M.O. abuse.
There’s the explicit right of women to see a gynecologist,
and the right of parents to take their children to a pediatrician without
having to go through telephone-triage rigmarole.
And then there’s the right to appeal H.M.O. claim denials to
the courts. Here’s where the insurance-lobby propaganda machine will pounce on
the Patient Protection Act and try to claim that it’s a litigation-generating
bonanza for trial lawyers. But in fact, what the bill calls for before any litigation is allowed is an
elaborate mediation process in which a panel of medical experts rules on claim
denials under carefully established procedures-a mediation process that must be
exhausted before recourse to the courts is permitted. And in permitting access
to the courts for victims of H.M.O. abuse, all the bill is doing is recognizing
the reality that the real locus of medical malpractice these days has shifted
from doctors to H.M.O. bureaucrats, who for complex technical reasons have been
almost entirely immune from accountability in the courts.
Some state legislation has addressed H.M.O. abuses since the
Adams case, but most people are not aware of the H.M.O. lawsuit immunity, which
fuels H.M.O. arrogance and incompetence. But it is frankly a scandal that this
one sector of American society-one with an increasingly decisive power of life
and death over most Americans-is largely unaccountable to the courts for its
abuses and blunders.
But The Times reported on June 13 that the
H.M.O. lobby is gearing up another slick scare-tactic campaign focusing on the
specter of litigation raising health-insurance costs, pricing the poor out of
the market. In effect, blaming their victims for trying to fight back. (In
fact, states that have passed similar legislation have seen a very few
lawsuits.)
Don’t fall for it. And don’t fall for the Bush
administration’s phony “Patients’ Bill of Rights.” George W. has a history of
dissembling-if not lying outright-on this issue, most memorably in the second
Presidential debate with Al Gore, when W. had the nerve to take credit for a
Texas Patients’ Bill of Rights that he had first vetoed and then reluctantly
permitted to become law without signing. If idiot Al Gore had called W. on
this, he could have won the election right there.
And now W.’s administration is sponsoring a deceptively
named Patients’ Bill of Rights that Senator Kennedy’s office calls “riddled
with loopholes … designed to roll back rather than expand patient protections.”
I don’t have the space here to detail its many devious fraudulences,
except that “there is no prohibition of improper incentive arrangements by
H.M.O.’s” by which doctors are bribed to deny the best care to their patients.
And no protection from H.M.O. retaliation for doctors who go to bat for their
patients against unjust denials of proper care.
I urge those who are interested to get a copy of Senator
Kennedy’s scathing analysis of the phony Bush plan. It can be found in a May
16, 2001, press release archived on his Web site (www.senate.gov/~kennedy).
It’s a revelation of the depths of deception that opponents
of H.M.O. reform will go to in order to preserve their privileges, their profit
margins and their immunity from accountability.
When I read it, I thought of Mrs. Adams contemplating the
way she and her mutilated child were “tricked” and “fooled” by their H.M.O.’s
protocols.
Maybe, just maybe, this time-despite the well-funded ad
campaign-we won’t be fooled again.
Postscript : On
Thursday, June 14, Crossfire featured
an appearance by Georgia Congressman Charlie Norwood, a House Republican who
has defied the Bush administration to cosponsor a bill similar to the
McCain-Kennedy-Edwards Bipartisan Patient Protection Act. In explaining his
defection from the phony Bush plan, Mr. Norwood cited the tragic mutilation of
Mrs. Adams’ son Jimmy. Perhaps his suffering will not be in vain.
