Cognitive Dissonance
Why Some Patients Get
No Help After Brain Injury
Many Insurance Firms
Doubt Therapy's Uses;
Ms. Schrimpf's Dream
By THOMAS M. BURTON
January 8, 2007, Page A1
CINCINNATI -- At first, Joanne Schrimpf thought her life was returning
to normal. She was recovering physically from the car accident that
nearly killed her in February 2002. Then her behavior began to take an
odd turn.
She was convinced it was 1998, not 2002. She mistook her daughter for a
stranger and forgot the family had a cat. On a trip to the grocery
store, she couldn't decide whether to get cereal with or without sugar,
and began to sob. To tackle the problem, Ms. Schrimpf was offered
cognitive rehabilitation, a medical treatment that tries to reteach
injured parts of the brain how to perform basic functions, like
organizing the day or tuning out distractions. The therapy sent Ms.
Schrimpf on a long road toward recovery that entailed twists she never
could have predicted.
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| Joanne Schrimpf meets regularly with a cognitive rehabilitation
specialist who helps keep Ms. Schrimpf's recovery on and track and
prepares her for more meaningful and fulfilling activities. |
Joanne Schrimpf meets regularly with a cognitive rehabilitation
specialist who helps keep Ms. Schrimpf's recovery on and track and
prepares her for more meaningful and fulfilling activities.
Ms. Schrimpf, now 51 years old, is one of about nine million people in
the U.S. disabled from the effects of strokes, traumatic brain injury
and brain hemorrhages. Of that number, according to estimates from
doctors and support groups, over half suffer damage to their memory,
mental processing or behavior.
Many specialists are convinced that cognitive rehabilitation can help
this largely overlooked group, even allowing some patients to resume
work. Unlike Ms. Schrimpf, however, most don't receive treatment.
Medical studies, while compelling, aren't comprehensive enough for some,
and unlike with a physical injury, it's often hard to assess a patient's
progress. Many insurance companies, citing these factors, don't pay for
this therapy, or limit its scope. In addition, acute-care doctors often
simply consign patients to nursing homes.
'Walking Wounded'
This silent club -- doctors sometimes refer to its members as the
"walking wounded" -- is only getting bigger. Thanks to improving medical
procedures, more people survive accidents and strokes that would have
killed them just two decades ago. Many look perfectly normal, have mild
or no physical symptoms and yet are badly out of sync with the world.
"If you can't feel it, see it or touch it, the person won't get rehab,"
says Patricia J. Hantsch, medical director for brain-injury
rehabilitation at Schwab Rehabilitation Hospital in Chicago, a
well-regarded institution in its field.
Cognitive treatment has evolved rapidly over roughly the past three
decades. Many of its techniques were borrowed from those used to teach
children with learning disabilities. Others arose out of vocational
rehabilitation programs that helped the disabled return to work.
INVISIBLE INJURIES
- The Issue: Millions of brain-injury patients get minimal, if any,
therapy to treat memory and other problems.
- The Background: Most insurers don't pay for such care, and doctors
often consign patients to nursing homes.
- What It Means: Patients with physical disabilities are more likely to
get treatment than those with mental impairments.
The treatment takes many forms, including reading and computer
exercises, as well as relearning everyday activities such as planning
for shopping. Therapists at some centers use card games and computer
programs in which patients are asked to identify pictures and colors.
Patients are also taught how to sidestep their impaired memories through
the use of stickers, timers, notebooks and handheld computers. Others
are videotaped, so they can observe their altered behavior, which often
involves speaking too loudly and swearing inappropriately.
The treatment is based on recent discoveries about how the brain
functions. Research suggests that a damaged brain can adapt by creating
new pathways between cells. MRIs, for example, show unusual areas of the
brain lighting up when an impaired person is asked to perform a task
during rehab, suggesting that new neurons are taking over for destroyed
ones.
"The results suggest that alterations in the allocation of brain
resources can occur even in a subject many years post-severe traumatic
brain injury," says Linda K. Laatsch, a University of Illinois at
Chicago psychologist who conducted the MRI studies. Scientists find the
reverse is true, too. Disuse can lead to deterioration of brain pathways
and loss of function, researchers say.
Standing in the way of establishing cognitive rehab as routine treatment
is a big problem: "It's hard to demonstrate cognitive progress to the
insurance company," says Thomas K. Watanabe, the physical medicine and
rehabilitation professor who treated Ms. Schrimpf, who now works at
Philadelphia's Moss Rehab. By contrast, he says, "If a patient starts
out in a wheelchair and then starts walking with a cane, you can measure
that progress."
Denial of Claims
Outright denial of claims is common. After blood vessels burst in her
brain in February 1998, Frances Carmen, a nurse who inspected nursing
homes in Syracuse, N.Y., was left disoriented. Her neurosurgeon strongly
recommended cognitive rehabilitation. She says her insurer, Prepaid
Health Plan of Syracuse, refused. PHP was later bought by Excellus Blue
Cross Blue Shield of Central New York, which says it has no knowledge of
the case.
Ms. Carmen went back to work for New York state within nine months of
her brain bleed. She struggled to deal with colleagues and sometimes
showed up hours late for work. Initially, her boss was understanding.
But later, another boss wrote her up for tardiness and put her
performance under close scrutiny, say Ms. Carmen and a co-worker. Ms.
Carmen quit her job two years ago. The supervisor didn't return phone
calls seeking comment.
"I found it so exhausting to try to appear normal to everyone," Ms.
Carmen says. She recently began a new job as a nurse at a rehabilitation
hospital. She still hasn't gone through rehab herself.
"She was a very high-functioning lady and we were able to save her
life," says Ms. Carmen's neurosurgeon, Gary Rodziewicz. "But without
further therapy, such people are left at low-functioning capacity." Dr.
Rodziewicz says such rehab "is not only the right thing to do, but the
smart thing to do because some of these people can become
high-functioning again."
Often medical professionals, tending toward pessimism, direct people to
nursing homes and discount the possibilities of rehab. Frank Tishka Jr.,
a 42-year-old pipe fitter from Chicago, underwent emergency surgery for
a brain hemorrhage after collapsing in his basement last March. Three
days later, he couldn't speak or hold up his head.
His family says doctors at Advocate Christ Medical Center in Oak Lawn,
Ill., advised them to look for a nursing home. "They gave us to
understand he would be this way for the rest of his life," says his
sister, Laura Tucker. A spokesman for Advocate Christ says it can't
comment on Mr. Tishka's case, but that doctors generally try to strike a
balance between giving hope and telling the truth about very ill
patients, and that this "balancing act" can "be misinterpreted."
Mr. Tishka went to a nursing facility, but there an aide
suggested he could be helped by Chicago's Schwab center. After weeks of
intensive physical and cognitive rehab, Mr. Tishka began talking and
walking. He kept a "memory book" to aid recalling daily and weekly
activities. Therapists worked on his "left neglect," a condition in
which patients aren't aware of anything to their left, even though they
can see perfectly well.
Today, Mr. Tishka is living with his father. His speech has returned to
a level that appears normal to most listeners. He can get around without
a walker, although one hand is still weak and unsteady.
In recent decades, the survival rate for accident, stroke and brain
hemorrhage victims has dramatically increased, helped by the advent of
911 emergency systems, high-tech trauma centers and advanced
neurointensive care. The Brain Injury Association of America estimates
that the fatality rate from serious auto accidents has fallen to about
20% today from about 50% two decades ago.
Studies into the use of cognitive rehab haven't kept pace with this new
demand. In addition to the lack of funding from pharmaceutical companies
for studies, brain injury is uniquely difficult to study. Brain injuries
vary greatly, depending on the portion of the brain injured and the
nature of the patient. What, for example, would constitute success for
two patients with dramatically differing pre-accident levels of
intelligence and job demands? Also, rehab doctors say it's unethical to
withhold treatment from some so they can be a "control" group in a
study.
Stephan A. Mayer, director of neurointensive care at New
York-Presbyterian Hospital/Columbia University Medical Center, says
brain rehabilitation "is simply not an area where clinical-research
methodology has penetrated very much." He says, nonetheless, it's
obvious that patients who get warehoused in nursing homes tend to
deteriorate. "We know what happens to babies in custodial care," he
says. "They regress. It's the same thing with human beings dealing with
brain injuries."
In 1998, the government's National Institutes of Health set up a panel
to evaluate cognitive rehabilitation. Several existing studies had
defects such as small sample sizes but the panel still concluded that
the "evidence supports the use of certain cognitive and behavioral
rehabilitation strategies" if they're part of a structured plan.
A 2006 article in Archives of Physical Medicine and Rehabilitation
evaluated 87 studies of cognitive rehabilitation and said "there is
substantial evidence to support cognitive rehabilitation for people with
traumatic brain injury." The authors recommended future research to
isolate which factors make the therapy work best. Earlier, a European
neurological-societies task force came to similar conclusions.
Insufficient Evidence
Some insurers contend this evidence is insufficient. Many insurers don't
pay for cognitive rehabilitation, or they strictly limit its scope and
duration, often to a matter of weeks.
The Blue Cross Blue Shield Association's Technology Evaluation Center,
which advises 39 participating plans covering more than 98 million
people, wrote in December 2002: "Available data are considered
insufficient to make conclusions on whether cognitive rehabilitation
results in beneficial health outcomes."
Naomi Aronson, executive director of the Blue Cross technology center,
says the group would like to see a treatment for such patients, but "we
don't have as rigorous a body of literature as we would hope to see."
She says studies of cognitive rehabilitation tend to be small, have
mixed results or measure matters not relevant to the real world.
One big insurer, WellPoint
Inc. of Indianapolis, says it pays for cognitive rehab for accident victims but
not for stroke patients. Cigna
Corp.covers cognitive rehabilitation for brain injury, stroke and brain
hemorrhage if doctors document the impairment and report weekly
progress. For "patients with traumatic brain injury and acute brain
insult, receiving cognitive rehabilitation has become the standard of
care in the community," says John Poniatowski, Cigna's vice president of
coverage policy.
Sometimes patients don't realize they're impaired. Anne Forrest, a
49-year-old Yale-educated economist who worked for an environmental
group in Washington, was hit in what seemed like a fairly minor traffic
accident in 1997. When she tried going back to work, she found she
couldn't read, do math, use her computer or dial the phone. Her
short-term memory vanished. Her husband joked that she could hide her
own Easter eggs. She was plagued by weird food mishaps, such as putting
the mayonnaise on the outside of a sandwich.
After nine months, a new primary-care doctor suggested rehabilitation.
With no advocate guiding her way, it took Ms. Forrest almost two years
to work out what rehab she needed and how to get insurance coverage.
She persisted and received two years of cognitive rehab. She relearned
math, how to filter out noise and understand figures of speech that
brain-injury patients tend to take literally. "My life has been turned
around dramatically," she says.
Ms. Forrest now gives talks about brain injury to groups including
neuropsychology students, speech and language therapists and survivors
of brain injury. She hopes to resume her career as an economist, and she
and her husband are adopting a baby, a task she couldn't have handled a
few years ago.
At Schwab in Chicago one recent afternoon, a woman in her 20s with a
recent brain hemorrhage was working on her logic skills. Before her on a
computer screen were five colored rectangles in a horizontal row. The
patient had to pick new colors for each rectangle to conform to an
unknown, correct pattern. After each round, the computer would say how
many were correct.
The task took a huge amount of concentration: A color could be used
once, twice or even five times in the row. It took the patient 45
minutes of trial-and-error to uncover the correct arrangement. At each
step, she described her thought process while a therapist prompted her
on different strategies.
At the Drake Center, a rehabilitation hospital affiliated with the
University of Cincinnati, Karen Noonan, 42, was recently working to
improve her short-term memory, which had been damaged from burst blood
vessels in her brain. She was asked to plan a complex week's schedule of
activities and to set up a chart to help her manage the data.
"It was very overwhelming going home," she says, "and these exercises
help me."
Missing Out
There are many patients, however, who miss out. Gene Hildebrand, 64, of
San Antonio, a former computer-electronics instructor in the Texas A&M
system, suffered a stroke in 1997. "I went to sleep, and I woke up, and
I've never been the same since," he says.
Because private insurance for his rehabilitation ran out within months
of his stroke, he is a walking contradiction. Each morning, Mr.
Hildebrand reads in a clear voice from Psalm 91 to the residents of the
adult day-care center where he spends his days. His audience, many of
whom suffer from dementia and other severe problems, mostly stare into
the distance. Mr. Hildebrand sings songs, accompanying himself on
guitar. In his spare time, he can take apart a computer and rebuild it.
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| Gene Hildebrand, who had a stroke in 1997, sings
and plays guitar at an adult day-care center, but he's regressing mentally.
|
Yet recently, he got into a fight over some crayons. His wife, Renee,
holds his hand to guide him across the street. She worries that if a
fire broke out in the home, he would sit and watch instead of calling
for help.
Mr. Hildebrand went to a basic life-skills class -- a type of elementary
cognitive rehab -- at a local center in the first months after his
stroke. Doctors there say they don't have a long-term program to help
with cognitive skills. As a result, Mr. Hildebrand is stuck in an adult
day-care program tailored for people with far greater disability.
There, he works on coloring books of superheroes and Bible characters,
and proudly takes them home to his wife.
"He's here because I didn't have a choice and he's regressing," his wife
says. "I want there to be a choice. I know Gene is trapped in there, and
I don't know how to get him out."
Alex C. Willingham, medical director of Warm Springs Rehabilitation
Hospital in San Antonio, the institution Mr. Hildebrand attended
directly after his stroke, says he knows of no San Antonio-area program
available that would have given Mr. Hildebrand the more-advanced help he
needed.
"For Gene, there's not really a good niche," he says. "He's very bright,
and physically he's fine. Insurers don't like to admit that there are
long-term problems. To me, this is where society really fails." Dr.
Willingham says such a program could help, although it's hard to know
for sure.
How Therapy Can Work
Ms. Schrimpf's story shows how therapy can work, and also how tough the
journey can be. She was driving on Interstate 74 in Cincinnati in 2002
when a car swerved into her lane. She was pinned for an hour and almost
died from a broken neck and severed arteries.
In the hospital, Ms. Schrimpf insisted she had caused the accident, but
it wasn't true. She and her family thought her self-described
"loopiness" was due to pain medication. But she stayed loopy. Dr.
Watanabe, the rehabilitation physician, urged her to get cognitive
rehab.
At the city's Drake Center she did exercises to help compensate for what
her brain had lost. She placed Post-It notes around the house. A timer
told her when to check her notes. Therapists taught her how to
color-code sections of calendars as organizational tricks. It was, she
says, "like Stephen Covey on steroids," referring to the author of "The
Seven Habits of Highly Effective People." All the while, Dr. Watanabe
encouraged her to get more active and return to work.
First she went back to coaching a high-school swim team she had
organized. She found it difficult to record swimmers' times. Then she
decided to go to work in the office of her husband, a surgeon. She
didn't take Dr. Watanabe's advice, which was to get a vocational coach
to ease her adjustment. It was, she says, a "horrible and humiliating"
experience.
Ms. Schrimpf was disorganized and slow. She annoyed co-workers by
prompting herself with audible cues. She was too loud, and spoke too
close to people's faces. One co-worker complained to Dr. Schrimpf that
Ms. Schrimpf was driving her crazy. Ultimately, she left the job.
Now, she's working with a job coach -- paid for by the state of Indiana
-- who has taught her to be more subtle with her verbal cues and to
substitute a Palm Pilot for a blizzard of Post-It notes. She has
organized book-signing events, works on her public speaking and served
as chairwoman of her church's 150th-anniversary activities. "I'm
encouraged by her doing those activities," says Dr. Watanabe. "Our goal
from the start was to get her interacting with people in a meaningful
way."
Ms. Schrimpf also measures her progress by a seemingly small event. Ever
since 2002, she had virtually no short-term memory, nothing her brain
could process at night as dreams. But one night last year, a day after
her daughter wanted pancakes at breakfast and the family car had a flat,
she had an improbable dream about pancakes and car tires. She sees this
as a milestone in her recovery.
"It meant I was getting better," she says. "I was arriving at the new
'normal.'"
Write to Thomas M. Burton at tom.burton@wsj.com
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