At her fortieth birthday party, my
sister basked in the warm glow of loving friends, candlelight and good
cheer. She laughed her big beautiful smile, and we marveled at her
vibrancy. An effervescent children’s librarian and comedienne, Gayle
cherished her pint-sized audiences, her friends and her family, and she was
beloved in return. Two years and three months later, she lay dead and
emaciated, somehow expendable to her “health care system” which had made a
killing.
Neither First Nor Best: Health Care in America is 37
in the World: At least a dozen times
between April and November 2005, increasing fatigue, rashes, weight loss and a
myriad of over fourteen other symptoms led Gayle to seek a diagnosis, but with
a history of depression, she was repeatedly diagnosed with “anxiety.” One
doctor burned off a facial rash later determined to have been Lupus-related,
yet, when Gayle’s own Internet research led her to request a Lupus test, she
was told the results were negative.
Alarmed by her odyssey of dead-ends, I drove from
Dallas to Albuquerque just after Thanksgiving, 2005. I found my tall willowy
sister now bone thin, her clothes draped awkwardly as if many sizes too large.
Forty pounds below weight, she napped during work breaks, could barely keep
down her food, was often disoriented, and aches and rashes plagued her
constantly. Walking across the room exhausted her, and she often gasped
breathlessly even without exertion. Anxiety, my ass.
Co-workers and friends buttressed her finances, and I
served as chauffeur and caretaker. I had my Dallas household put into storage,
and together, we set to work, determined to save her life, and insisting on
referrals wherever we could get them. She began a battery of tests in
December.
Just before Christmas, at a long-awaited appointment
(which we’d been encouraged to cancel by her “primary care” doctor), our new
rheumatologist stated: “I don’t understand why you are still seeking a
diagnosis when the original test four months ago was positive for Lupus.”
The next day, an oncologist reported the presence of a lung tumor. Gayle
had never smoked, but the tumor presented clearly in the first series of
tests.
I left her weakly sitting on snowy curbs while I parked
the car and scurried to find wheel chairs. We wished for our own gurney. We
waited for hours in emergency rooms; on one occasion she waited six hours in
emergency for a bed in the hospital. After long waits, doctor consultations
generally lasted five minutes, fifteen if we were lucky. Too many times she was
sent home with no medication or tests, only the nonchalant suggestion: “You
need to work at getting your strength up.” We begged for a home health nurse.
We desperately needed someone to coordinate her
care. A new doctor, strongly recommended, kept her waiting for three
hours one morning. She collapsed in his office and we left without seeing him.
Neither the oncologist nor the rheumatologist had
hospital privileges, and only once at
my insistence, did they speak to one another.
It simply wasn’t the way things were done; their frail patients are
their conduit to one another. “What does the other doctor say?” they’d ask.
With each hospital visit, new doctors started from scratch, now happy to re-run
exhausting tests before sending her away to “work at getting stronger.” Even
when re-admitted to the same hospital, they’d begin again, never the same
doctor twice, seemingly never having consulted her records.
“She’s already taking that!” I said with alarm as a
doctor duplicated a medicine. “OH! Well! I didn’t know,” he huffed, crumpling
the prescription.
Someone eventually decided to remove the tumor, but a high fever
the day of the surgery left her sitting in an emergency room stall for eight
hours waiting for the fever to come down . . . just waiting. They finally
sent her home again to “get stronger.” The tumor stayed.
We mused that this was nothing like an after-school
special where one of us might dramatically declare: “As God is my witness, we’re
going to beat this thing!” Beat what thing? Even God was on a
smoking break and we were left just dinging the little bell in
perpetuity. No time for resolve or acceptance; her free-falling decline
met no resistance, no plan of action to which we could commit, nothing to grasp
in hope, and no one to help.
Fourteen days before her death, we sat cross-legged on
a bed with a laptop, two tall red-headed sisters making out our wills. We
laughed with dark humor as we melodramatically disinherited childhood bullies
and bequeathed our shabby treasures to loved ones who’d no doubt view them as
junk. We left each other the lion’s share, swapped passwords, and told
each other what to burn.
We planned who we’d haunt. “If you see a beautiful
woman in white float by the riverbank, that’s ME!” she said, referencing the
legend of La Llorona. “Like you know how to float by a riverbank!” I scoffed. “Sing me a little ditty,” she said weakly,
and I solemnly crooned the first line of "Ave Maria¸" which made us giggle
as if we were six. “You better not die!” I shook my finger fiercely.
“People do,” she rasped. Neither her humor nor her wisdom failed
her.
Her liver did. They rushed her to ICU shortly after her
second dose of chemotherapy through a Rehab hospital into which we’d finally
begged our way. At 5’11” she now weighed 112 pounds. A few days
later, the ICU nurses said that she had a staph infection which may have come
from an open wound. “Perhaps it’s the bedsore on her back,” I
suggested. “What bedsore?" the nurses asked, apparently also never
having read her file -- nor apparently, having bathed her so that the wound
would be noticed.
Once stabilized, they moved her from ICU to a mid-ICU
unit downstairs. She seized within twenty minutes of the move. The
Lovelace staff panic was palpable, “Give her this, NO -- um -- give her that!”
“NO! NO! OH, MY GOD!!” To the layman, the energy of a code call is terrifying,
but we are in adamant agreement that the lead doctor panicked, as did the staff
under his direction.
Now in a coma, Gayle was returned upstairs to the
ICU. My cousin asked a nurse how the drugs they had given her in the
mid-ICU unit had affected her condition. The nurse replied, “We have no
way of knowing what they gave her downstairs.” No idea what they
gave her one floor down in the same hospital?? Nothing in her file?
No update between the staff when a patient is handed off??
Gayle’s dearest friends stood with me in the early
morning hours when I called them to “sing her on” as her life support was
removed.
Who among you thinks this is the finest care in the
world? What is the point of files that aren’t read and uncoordinated
treatments? They weren’t sure how one diagnosis affects another or how the
medications would interact. They told us so. God help the
patient who must do this all alone or whose sister doesn’t have the luxury of
time to learn the medical maze before it’s too late.
They will insist that their level of care was the
highest in the land. They’ll say I’m grieving, it was God’s will, and
they are an easy target. Bullshit.
I can only commend Dr. Vijayalakshmi Kumar, who in the
eleventh hour was handed this cluster-debacle, and who did everything in her
power to save my sister. Gayle practiced her full name until she could say it
correctly and Dr. Kumar cried at her funeral.
Really? They Fear Malpractice? The statute of limitations expired just as I inquired
into legal recourse. The deadlines are tied to the offending action – so which
act was the culprit? I should have been
more attentive, but then, like a car warranty, they seem to know just tipping
point, don’t they? Planned obsolescence . . . that sweet spot where the engine
will crack or the family will emerge from despair.
Since Gayle was single, there was no aggrieved party,
no dependents to rely on her income. No
plaintiff, even if I’d tried. Otherwise, it sounded to the attorney like an
incredible case, and he told me, “They say if you want to die, go to Lovelace.”
Funny, that’s not in their ad.
Highest Expenditure Per Capita is NOT for “Care” From the moment they diagnosed Gayle with two
conditions, we repeatedly requested a transfer to MD Anderson in Houston -- they
were willing to take her, and our transportation and housing were arranged.
Yet each time, Lovelace refused. The oncologist suggested that it might
be a “paraneoplastic syndrome,” a complicated anomaly which presents itself as
another disease – it was a mystery, but they weren’t about to let anyone else
figure it out. It was their hospital, their doctors, and their insurance,
and clearly they wanted the money to stay in house.
A Starbucks employee to whom I unburdened suggested I request
a Lovelace patient advocate, but it took weeks to prove the situation was
critical enough to warrant one. Once assigned, the advocate “could not” provide
us with a full copy of patient benefits, and stonewalled even harder against
going to MD Anderson. “You can appeal in 30 days,” the advocate
said. “She’ll be dead in 30 days,” I replied. The “advocate” disappeared,
and Gayle was dead less than ten days later.
Premiums Support the Corporate Agenda: For all the care that Gayle didn’t get, together we
watched the daily unrolling of the new Lovelace Health System’s advertising
campaign. Brightly dancing flowers
gently floated across images of healthy skipping people, obscuring nightmares
like ours from the unwitting healthy consumer. We hated those empty,
superficial ads which bombarded us from television and billboards.
In 1997, the World Health Organization rated the US
overall health system performance as 37 in the world with the
highest expenditure per capita . . . perhaps because premiums that businesses
and individuals pay in good faith don’t go to the care of our loved ones,
but instead, to sustain an industry whose goal is profit, not health.
Talking points, until you’ve lived them . . . or died by them . . . or
scattered your loved one’s ashes in a lonely meadow.
Our politicians, by
and for the people, dare betray us to benefit the greed of corporate health
industry, which is by and for profit.
For all the care that Gayle didn’t get, I now watch the figures and dollar
signs estimating lobbyist budgets. I
watch the health insurance cartel/industrial complex find ways to ensure that
they spread the Travis sisters' nightmare to the same unwitting Americans who
support their cause. I watch the numbers that show shareholder profits, and
executive benefits and bonuses . . . those bonuses.
The “rights” of our economic system trump the needs of
the people . . . but capitalism is a false god, not worth the sacrifice of my
sister . . . or yours. Health reform naysayers have never watched their
own Gayle die or they wouldn’t protect a system that obligates the patient to
pay for advertising, corporate jets, bonuses, dividends, ponzi schemes and the
run-around even as they suffer and are forced to beg for moth-eaten care. The
health industry has had decades to show integrity, and now deserve no “second”
chance to squander our trust and our health.
Quite simply, Lovelace waited her out. When
Senator Grayson revealed his white board explaining the Republican plan: “Die
Quickly” I burst into tears, simultaneously sobbing and screaming in my head:
“Did she die quickly enough for you, Lovelace? Did she cost you a week of lobbying
funds? Did some shareholder pout that his check wasn’t big enough?
Did some executive forfeit his limo for a day, or a sliver from his fat
bonus? Did my little sister die quickly enough to save you money?”
I miss Gayle every day . . . a ground-hog day repetition
of deep grief that demands a do-over, or at least, some other way of
being. Yes, I know. Even if Sanjay
Gupta and Dr. Oz had held her hands the whole way, we might have lost
her. But we were only asking for reasonable care, so we'll never know, will
we?
Somewhere along the way, my only sibling was caught in
a vortex of “policies and procedures” designed to minimize costs and avoid
accountability. Really, what
are you clutching so fiercely? There’s no death panel, you foolish Sarah
Palin. There doesn’t need to be. It’s already built into the codes
and tables of your precious for-profit hospitals and insurance companies. That’s what stands between you and your
health. You’re clutching fool’s gold, my deluded friends.
So, haunt away, Gaylee-Bird! Walk the halls of
Congress in your flowing white gown and whisper your story as they reach to
cast their votes. Leave no conscience unturned, no greedy fingers clenched.
Don’t let your last experience be as Lovelace’s profit #1067678-00. You’ve
work to do! Light the way, and haunt
them from here to the finest non-profit single payer health reform America can
imagine.
For the sake of health care reform, I write this in
loving memory of the magnificent Gayle “Timber” Travis (1964-2006).