Fragmentation Beyond My
by Tom Von Sternberg, MD
I have recently gone through a
classic personal experience of navigating the health care system
with my parents in of all places Cleveland, Ohio. Known more often
by Americans as the home of the Rock and Roll Hall of Fame,
Cleveland is also a major health care hub anchored by the prestigious Cleveland
Clinic and Case
Western Reserve University.
My mother is 81 and my father
is 84. They live in a small Levittown-like bungalow in an older
suburb of Cleveland. Mom has thyroid problems, hypertension, and
arthritis. Despite these chronic conditions, she still golfed, drove
an automobile, and was completely independent up until mid-2003. Dad
has hypertension and high cholesterol. He is also blind in one eye
and has poor hearing. A previous fracture limits movement in his
right leg and has stable quiescent prostate cancer. He is a World
War II prisoner of war and suffers from manageableónot
severeópost-traumatic stress. Dad, too, is independent and is
involved in church and other community activities. Momís regular
internist is nearing retirement. Dadís medical services are a bit
more complicated. He sees a younger internist for blood pressure and
cholesterol treatment; but he goes to VA hospital for his eyes,
hearing, therapy for his leg, and his post-traumatic stress
Mother Begins Falling
Down Four to Five Times A Day
From May until August 2003, mom
develops a progressive balance problem, literally falling four to
five times per day. Her close-to-retirement internist says ďitís
just aging.Ē Mom pushes back and asks for physical therapy and for a
comprehensive gait and balance evaluation. Her internist says, ďno,
it will not help.Ē I was now getting a clearer picture of the
intensity of her falling and flew home for the weekend. I decided to
access the American Geriatric Society website and find three doctors
on the west side of Cleveland. Just as important, I searched the web
for case managers in the Cleveland area.
My mom is a mess. She cannot
even take two steps without major effort, is flat affect, and has
very poor memory. I call the first doctor on my list. Within 15
minutes, he arranges her admission to the community hospital and he
has a neurologist meet her when she is admitted. I return
Minneapolis, feeling relieved to entrust my mother to capable hands
in my professional fraternity.
She has an MRI, lab tests, and
a spinal tap for removal of cerebrospinal fluid. She is diagnosed
with normopressure hydrocephalus (NPH), a condition characterized
primarily by gait (walking) problems, dementia, and urinary
incontinence. NPH can be difficult to diagnose and many times goes
While Mom is the hospital, I
somehow manage to get two living wills done. Now it gets
interesting. There are no neurosurgeons at this hospital. She needs
to get transferred to the big trauma center facility where her new
competent geriatrician neither works nor has admitting and practice
dad calls me and says ďtheyíre sending her to a new hospital today.
I don't know what to do. I think Iím losing it!Ē I call a case
manager and we agree on the contract over the phone; she goes to the
hospital and actually connects with the discharge planner. She gets
a clear picture of what is happening and coordinates both the
transfer to the next hospital with my dad and helps explain to dad
what is going on.
Mom goes to the big trauma
hospital, and the ďteamĒ of neurosurgeons checks her out. They come
to the amazing conclusion that, no, its not normopressure
hydrocephalus, it must be cervical chord compression. I get on the
phone to her original neurologist from the community hospital and
ask him to call neurosurgery to make the case why we think it is NPH.
Phone Plea Works
The neurologistís phone plea
works. The trauma hospital neurosurgeons reconsider their diagnosis
and do another spinal tap (4 hours in radiology) to remove fluid.
She walks better again, they are convinced, so off she goes to
Remarkably, my mother avoids
delirium, and makes good progress in physical therapy. Two days
later, I receive another frantic call from my dad. The insurance
company says she has to leave the hospital and he does not know what
to do. Our case manager comes to the rescue with three good choices
for us to considerórehab at the trauma center, rehab back at the
community hospital, or rehab at a nursing facility. The decision is
influenced by which will accept her, which insurance will pay for,
and which my dad can get to easily.
We decide the community
hospital transitional care option is the best choice. With two weeks
of therapy, my mother makes a huge improvement, walking hundreds of
feet and successfully carrying a piece of cake from one point to
another in the physical therapy room.
Complicates Momís Return Home
My motherís recovery and return
back home is complicated by my dadís emotional struggles. He is
sliding into major depression. He cannot make decisions. He cannot
figure out how to pay bills. He is completely overwhelmed by my
Again from my office back in
Minnesota, I call his doctor to get Dad into the office. His doctor
starts him on Zoloft and the case manager helps ease the burden by
taking care of discharge plans, arranging an overnight aide for the
first four nights, and getting the Lifeline patient alert system
installed in the home. With Mom at home, she gets home physical
therapy and occupational therapy to help her regain her strength and
ability to walk. But after just one week at home, Mom is actually
getting worse and Dad continues to experience significant problems
coping with her illness. She starts to fall again and is readmitted
to the metro trauma hospital.
Mom develops some bleeding on
the surface of the brain as the fluid is decreased by her shunt. She
needs two burr holes to drain the blood. She then has a re-bleed and
needs a third burr hole. Three burr holes later, mom is doing better
but not great. Nonchalantly, the neurosurgeons order another burr
hole. But this one causes a small bruise to the brain that leaves
Momís left arm and leg a bit weak.
Back to the World of Therapy
Mom still exhibits no delirium
and a discharge meeting is scheduled. Where should we go this time?
The case manager we hired again pops in and helps my dad make a
decision. They decide to stay at the metro hospital, so she is off
to the brain rehab ward. Meanwhile, Dad is still very depressed and
I ask his doctor to schedule a psychiatric consultation. The very
next day Dad gets in with a geropsychiatrist who puts him on the
drug, Remeron, to help treat his depressive symptoms.
After 10 days in the metro
trauma centerís brain rehabilitation unit, Mom is ready to be
discharged. Dad is better and the plan calls for Mom to be home
before Thanksgiving. The case manager is still involved in arranging
care and Mom may or may not need overnight help. Dad gets a call
from the insurance carrier just to give him a heads up that they are
in negotiations with the metro trauma hospital. They might drop the
hospital from their provider list in 2004. But with Dadís new
medication, he copes alright.
I have both good opinions of how things worked out. Mom had very
responsive clinicians, but the fragmentation of services and
decision-making was beyond my wildest dreams.
Learning Ė Improving the System
Case Manager is critical when a family is unable to make
discharge plans or understand insurance options. It is
expensiveóour case manager charged $100 per hour (the first
month bill was $1,600).
a physician, I knew when to intervene at very strategic points
that regular folks just would not be able to do.
were at least 7 discharge planners involved.
new primary physician who quickly got Mom into the community
hospital was kept out of the loop about her at the trauma center
hospital. We need to develop a better way of keeping primary
care physicians updated, so they can take over once the person
is discharged back home.
Back to Personal Stories Index