Surviving the American Death Panel

When healthcare is a profit-driven, corporate industry, as it is here in the wealthiest country in the world, competitive companies and some individuals will become very rich participating in it.  Sadly, people also die under such a health care system, which tends to be as expensive as the market will bear.  Those who don’t die often face personal bankruptcy for bills incurred during life-saving medical interventions.   These are, one supposes, the price we all pay for freedom, for the exalted Free Market.   Americans should be free, under our system, to pursue unlimited wealth and damn the torpedoes.   Sick people die, poor people die, not our problem or responsibility, as individuals in the Free Market or as a society.

Part of the corporate structure is hierarchy, in which each level is accountable only to the ones above.   This produces natural caution, a reflex to self-justification and a tendency to ass-covering.  A related side of corporate life is patriarchy, for lack of a better word.  Corporations tend to dictate terms, be rigid, owe no explanation, erect obstacles to information and have procedures to ensure that their policies are inviolable and untouchable by courts of law.  They are not known for flexibility, fairness, even common decency.  They behave this way because they can, because they write the laws that govern them, finance the elections of their bought and paid for candidates.    

What does all this have to do with my own inability, so far, to see either of the two nephrologists recommended to me by a doctor I respect?   I shall tell you as briefly as I can, as I suffer silently with idiopathic kidney disease.

By chance, on the recommendation of an acquaintance of  a friend, who got the doctor’s name from a list, I saw a patriarchal nephrologist, a female patriarch by chance, who dismissed my questions about nutrition, life-style, alternative treatments, supportive therapies, recent studies of my disease I could read.  None of these things would help me, she said.   She urged me, from our first meeting, to immediately begin side-effect rich immunosuppressive therapy.  Months 1, 3 and 5 begin with three consecutive days of IV corticosteroid infusions and it takes off from there.

This immediate immunosuppressive therapy is called for, I eventually learn, only for high-risk patients, those with a high daily proteinuria count and other risk factors.   All other patients are advised to wait, and watch, as a cure without this regime is about as common as a cure with the sometimes devastating immunosuppressive treatment.   The statistics argue for waiting, and rechecking levels every couple of months absent a medical determination that you are in the high risk category.  

This nephrologist assessed me as a high risk patient without ever checking daily proteinuria levels and even though my kidney function is normal.  She did not share her diagnostic findings with me, beyond saying the disease was getting worse and urging me to start with the IV steroids.  She never mentioned a risk category or the reason for the haste.  She told me over and over that I need to start immunosuppressive therapy right away.

I was never told why I am at high risk as I was being pressured into starting the immunosuppressive therapy ASAP.  Patriarchs and corporate types do not owe such explanations.  They offer the service they deem correct.  To this end, I was manipulated into having a medically unnecessary biopsy done.  The necessity of the biopsy was that it is the last part of the protocol before immunosuppressive therapy.  I was told it would show the precise stage the disease has progressed to.  I’ve since learned it cannot really show this with any precision.  

For a long list of reasons, I lost faith in the defensive, argumentative, dismissive nephrologist.  I simply could not trust her, in spite of her strenuously extracted, and meaningless “unconditional apology”.   She was about as sincerely repentant as Trump was about being the nation’s number one Birther.  

I got a recommendation for a senior nephrologist.  As luck would have it, he was in the same practice group as the original patriarchal nephrologist.  I was told the two doctors would have to discuss the switch, as they generally did not see patients of other doctors in their group.  I was told my nephrologist needed to consent to the change and the other doctor had to agree.  

My nephrologist seemed to consent in a terse message: I have instructed my front stuff.   Her front stuff told me, each time I called, that the doctors were still deliberating.  After three weeks of calls to make an appointment I was told that they never, under any circumstances see a former patient of anyone in the group, it was an inviolable rule.   As Jane Fonda’s character in Grace and Frankie said the other night, during a vexing moment: “fuck me in the eye!”

I went to a good deal of trouble and expense to get another recommendation.   Thankfully this doctor was on my health-insurance plan.   I called the number the insurance company had listed for him, to make an appointment.  It was a wrong number.  I called the insurance company and was given two more numbers, not available on their on-line participating providers list.   They connected me to the doctor’s office.  

The doctor’s receptionist informed me that they do not participate in the plan, that Healthfirst has them listed incorrectly.  They only take insurance patients for the private dialysis center they run, but are not participating nephrologists for any other purpose.  This receptionist was knowledgable about insurance law, telling me, for example, that it is a crime to pay a doctor out of pocket if you have insurance coverage.  She referred me to an NYU nephrology group, the same one who had treated me so unethically. She was not all that sympathetic, in my opinion, and after snarling a bit, and cutting me off, hung up on me before I could tell her to fuck off.

Which was just as well, I don’t find it very satisfying or effective to tell unreasonable, nasty people that they are unreasonable or nasty.  In the case of this receptionist, there was really nothing more she could do.  That I had one final , quick question, which would have the same answer as all the others, was nothing compared to her duties to the patients waiting in her office as she was wasting time talking to a non-patient with an attitude problem.

“If you like the doctor you have, you can keep that doctor,” promised President Hope and Change, the former Compromiser-in-chief, while negotiating against himself during the passage of Obamacare.  If you don’t rate him highly on that promise, remember that he never came in America’s mouth.  Not explicitly anyway.  The people we have in there now, hoo boy, talk about death panels and forcers of unwanted touching.

My task now is to figure out how to use this ill-designed system against itself to get the treatment I need for this potentially fatal disease I am up against.  A disease that, thankfully, seems to take a long time to finish you off and that, as mysteriously as it comes, sometimes disappears by itself.  

I don’t know how interesting this has been to read, if at all, but I note that the knot in my chest I woke up with seems to have unloosened itself by a turn or two, and that is a very good thing.



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