Neither First Nor Best: Health Care in America is 37^th in the World: Seven times between April and September 2005, increasing fatigue, rashes, weight loss and a myriad of over fourteen other symptoms led Gayle to Dr. Timothy Grenemeyer, but with a history of depression, she was repeatedly diagnosed with “anxiety.”  He burned off a facial rash later determined to have been Lupus-related.

She switched to Dr. Patricia Morrow, but no “over-testing” for Gayle.  Six months into her illness, she Googled her symptoms and immediately requested a Lupus test, but was told that the results were negative.  She squeezed a rheumatologist referral from Dr. Morrow, though the appointment was months away.  Dr. Morrow told her to cancel it, and sent her away with another diagnosis of anxiety.

Alarmed by her odyssey of dead-ends, I drove out from Dallas to Albuquerque just after Thanksgiving, 2005.  I found my tall beautiful 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.

At the long-awaited un-canceled appointment, the rheumatologist quizzed us: “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 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.

Dr. Morrow discarded; we still needed someone to coordinate her care.  A new doctor, strongly recommended, had her wait for three hours one morning. She collapsed in his office and we left without seeing him.  I lost count of the times she was sent home by doctors who prescribed no medication or tests, only telling her, “You need to work at getting your strength up.” We begged for a home health nurse.

There was no communication between the rheumatologist and the oncologist and neither had hospital privileges.  Once, after I melted down and begged them, they spoke to one another, but it simply wasn’t the way things were done.  Frail patients are their conduit to one another: “ask your other doctor what they think” and “what does the other doctor say?” they’d ask.  With each hospital visit, other doctors started from scratch, now happy to re-run tests that sapped her energy away then send her home again to “work at getting stronger.” Even when re-admitted to the same hospital, they’d start all over again, never the same doctor twice, seemingly never having read her records.

One doctor duplicated a medication that she was finally receiving, apparently not having read her file carefully.  “She’s already taking that!” I said with alarm. “Oh, well, I didn’t know,” he answered, crumpling the prescription.

Someone 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.”

We mused that our experience was nothing like an after-school special where one of us might dramatically declare: “We’re going to beat this thing, as God is my witness!”  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 decline was in a free-fall and there was no plan of action to which we could commit – nothing to grasp in hope.  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 river, that’s ME!” she said, referencing the legend of La Llorona. “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 told her fiercely.  “People do,” she rasped weakly.  

Neither her humor nor her wisdom failed her.  Her liver did. Shortly after her second dose of chemotherapy, she was rushed to an ICU unit from a Rehab hospital into which we’d finally begged our way.  She was 5’11” and 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.  They were full of excuses; the shift was changing  . . . they didn’t have her files transferred yet . . . .

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??  No doctor’s notes?  Are you kidding?

Who among you thinks this is the finest care in the world?  What is the point of files that aren’t read? They didn’t know her medications – didn’t coordinate her treatments – 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; and God help the one whose sister doesn’t know the intricacies of the maze, and has no luxury of time to learn 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 attended her funeral and cried.

Really? They Fear Malpractice? The statute of limitations expired before I could inquire into legal recourse. 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 children or dependents who would have relied on her income, thus 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.” Well, that’s not what their pretty ad says. 

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 a family friend would pay for our transportation and housing.  Each time, Lovelace refused.  The oncologist suggested that it might be a “paraneoplastic syndrome,” a complicated anomaly which presents itself as another disease – maybe, could be, weren’t sure, many things we don’t know . . . but they weren’t about to let anyone else figure it out.  It was their hospital, their doctors, and their insurance, and it was clear they wanted the money to stay in house. 

A Starbucks employee to whom I unburdened suggested I get a patient advocate through the insurance company. Our hope was short-lived; it took weeks to prove the situation was critical enough to warrant a Lovelace “patient advocate.” She would 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.  Nothing more from the “advocate,” and Gayle was dead less than ten days later.

Both Gayle and her employer paid the premiums for the Albuquerque Lovelace insurance.  Though we didn’t get them, allow me to list the services we expected in return for the premiums and co-payments:

• Serious, timely investigation of symptoms by doctors
• Basic tests and referrals related to symptoms as describe
• Doctors should read the damn files
• Medical team collaboration
• Personal doctor consultation by hospital
• Competent reading of critical tests
• Medications should not be duplicated
• Timely attention in emergency rooms and doctors’ offices
• Continuity of wound care
• Patient file should follow patient from one FLOOR of the hospital to the next
• Patient file should show continuity between hospital admittances
• Patient assistance program should assist patient, not buttress insurance
• Transfer of complex cases to better hospitals

In 1997, the World Health Organization rated the US overall health system performance as 37^th 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.

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 – brightly dancing flowers gently floating across images of healthy skipping people – advertising that hid nightmares like ours from the unwitting healthy consumer. Just so you know, the pretty commercials aren’t the real thing. We hated those empty ads. 

For all the care that Gayle didn’t get, I now watch the figures and dollar signs estimating lobbyist budgets; I now watch the health insurance cartel/industrial complex find ways to ensure that they spread the Travis sisters' nightmare to the same ignorant, unwitting Americans who support their cause. I watch the numbers that show shareholder profits, and executive benefits and bonuses.  Those bonuses.  They deserve no second chance to squander our trust.

Our politicians, by and for the people, dare betray us to benefit the greed of corporate health complex, which is by and for profit.  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 abysmal care.

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 an 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 swallowed by the cracks and swept away by “policies and procedures” designed to 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 there in the codes and tables of your precious for-profit hospitals and insurance companies. You’re clutching fool’s gold, my deluded friends. 

So, haunt away, Gaylee-Bird!  Walk the halls of Congress in your long 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 functional non-profit single payer health reform. That's my girl!

For the sake of health care reform, I write this in loving memory of the magnificent Gayle “Timber” Travis (1964-2006).