What a mensch would do

There are few far too few mensches in the world, unfortunately.  A mensch will go out of his or her way to do the right thing.   A mensch listens to the whole story before putting their two cents in.  A mensch is patient, gives the benefit of the doubt.  A mensch is fair, and humble and doesn’t take advantage of people.  A mensch will not fight unless there is no reasonable alternative.  Like I say, mensches are rare, sadly.   Much more prevalent, particularly in a competitive, hierarchic, materialistic society like ours, are the dickheads, douchebags and motherfuckers, the winners who wake up every day ready to kick some ass.   Just look at the front page of any newspaper, you will see photos of an impressive collection of these types.  It is rare to see a mensch as a captain of industry or in any position of great power.

I mention the lack of mensches, and Hillel’s idea that in a land where there are no mensches, it is even more important to act like a mensch, as a backdrop to the following story.  If there was a mensch involved in the medical office I am going to describe, they could have done things much differently, much better, in a much more healthy way for all involved, particularly the patient. 

I was diagnosed with a serious kidney disease during the annual renewal period for Obamacare.   In light of this diagnosis, I decided to change insurance, pay many times more than I paid in 2016, in hopes of getting better medical coverage than I had last year.   The results have been mixed, though I am paying, literally, more than ten times what I paid last year for health insurance.  It’s an irrelevant detail for purposes of the following story, though, it annoys the shit out of me, so I mention it.    

In April, having been diagnosed with this disease four months earlier, I visited a nephrologist I’d contacted off a list given to me by a friend, who got the list from an acquaintance at a hospital.  This nephrologist had been the second or third I called, the first, I remember, only dealt with end-stage kidney patients, and I hopefully have a few years to go before that.  

The doctor seemed bright and personable.  I liked her.  The doctor had a hammer.   The only thing, she told me, that medical science has to cure my disease is immunosuppressive therapy, which comes in six month, twelve month and single injection form (though insurance doesn’t cover the very expensive one shot deal).  Some people, she assured me, have very mild side effects from the back to back to back infusions of steroids and the other chemicals designed to temporarily shut down the body’s ability to fight disease.  

They control for the suppressed immune system, inoculate you against the worst diseases you’re likely to get when the body’s natural defenses are suppressed.   For some reason, I was uncomfortable with this, particularly when the doctor explained it as an atom bomb or shotgun approach that temporarily takes out the whole broken immune system and, more often than not, fixes the problem when the system comes back on line.  A cure percentage was not available to the doctor.  When pressed she said it was closer to 50% than to 90%.   

My disease is idiopathic, which means the cause is unknown.   I needed more information.  I’d heard, for example, and the nephrologist confirmed, that 1/3 of patients who get this idiopathic disease have a spontaneous remission within the first year or two.  The disease, in other words, disappears by itself, as unexplainably as it appeared.

 The doctor, having only a hammer, told me I was wasting my time trying to get answers to all these questions and that hoping for remission was a crap shoot that could do permanent damage to my kidneys.   I was hung up on the fact that the disease was idiopathic, she said.  She tried to convince me that it was not idiopathic, because they knew so much about its progression and how to cure it.  She described the cure again, in great detail.  

At the end of her long presentation about her hammer I told her that since science doesn’t know what causes this membrane to grow on the filters of the kidney that, whatever they knew about a way to cure it sometimes, by definition the disease was still idiopathic.  She didn’t like the way I’d seemingly ignored her presentation of the cure.    

The doctor retested me, five or six weeks after our first meeting.  The test would confirm what the January and April tests had– I have a blood marker, some kind of antigen or something that comes up 99.9% in patients with my kidney disease, and only in the blood work of such patients.  

Still, though the test might well show that the disease was still progressing (and the retest would show it was),  I hesitated to commit to six months of immunosuppressive therapy, which she was urging me to start immediately. We had another discussion during that second visit, virtually identical to the first.   She dismissed the idea that diet, exercise, life-style changes could have any effect on the disease or improve my chances of remission without the chemotherapy.  She told me I’d be wasting time and money going to see a nutritionist or naturopath.   She had no studies to point me to.   At this point, realizing this was all she knew, and that my many questions could never be answered by her,  I probably should have thanked her and gone to see another doctor.  

Instead, I allowed her to convince me to have a kidney biopsy.   She explained to me in detail that a biopsy is the only way to know how long I’ve had the disease.  In an early stage, the tissue sample will show tiny dots, like pinpricks, of membrane.  As the disease progresses these dots become larger and larger and begin to grow on top of each other.  Eventually, toward the stage where you begin to have serious decrease in kidney function and are headed toward dialysis or a kidney transplant, the membrane is a thick coating over the nephrons.  By staging the disease, she told me, we would know exactly how urgent it was for me to begin immunosuppressive therapy, medical science’s only present treatment.  She sent me downstairs to the lab to retest my blood and urine.

A few days before the biopsy I had a call from the lab.  The doctor had neglected to check the box to have the coagulation of my blood tested, along with the other tests.  This coagulation test was needed before any biopsy.  I made an appointment and went back to the lab I’d been to a few days earlier.  A few days after that I managed to avoid a $2,100 charge to my credit card, demanded of me the afternoon before the biopsy,  prior to the biopsy.  I avoided this charge, though my final “out of pocket” responsibility for the biopsy is well over a thousand dollars.  

It turns out the biopsy cannot tell you how long you’ve had the disease, not with any precision at all.  The biopsy is, however, necessary protocol before the immunosuppressive therapy can begin.   The doctor told me I’d misunderstood, had unreasonable expectations, was very smart but had too many questions.  I resisted telling her she was acting like a fucking bitch, but we did argue.  We argued again the next time we spoke.  She told me again that I was being unreasonable.  

Being a lawyer, by training, I began to make a record.  I sent her a message that laid out part of my case, her repeated failure to return calls to give me test results, promises she simply didn’t keep.  She called me and struck a very defensive pose, which is to be expected.  She explained that she works at four different sites and rarely has a chance to check email or messages.  For my part, I was frightened and angry and not acting like a mensch, though my words in the text were very measured and I mostly kept my patience as she justified herself and explained why I was wrong.  I made my points.  The relationship between doctor and patient was now toxic and adversarial.  

She began to offer the conditional apologies Harry Shearer has helpfully styled “if-pologies”.  If you feel that I misled you about the biopsy, then I am sorry.  If you were hurt that I never responded to multiple messages and calls to my office to give you test results and that increased your anxiety, then I am sorry.  If your anxiety was increased by misunderstandings or miscommunications, then I am sorry.  I corrected her each time as to the form of these non-apologies, but it was a very wearying exercise.

After a few more defensive, blame-shifting ifpologies, I felt ready to punch her out.  I managed to summon the last of my cool, thanked her for calling, told her I was sure she was a very nice person but that I had to get off the phone.  My head was ready to explode, but I felt I had done pretty well under the circumstances.    

A few hours later, early Friday evening, when I’d finally calmed down, I had another call from the doctor.  She told me how upset our previous call had made her, how much I’d hurt her feelings by calling her a malicious person, etc.  I suppose one could call this playing the woman card.  It worked a little bit, I explained quietly that I had never called her malicious nor did I believe she was a malicious person.  Overworked, defensive, a bit dismissive and argumentative perhaps, but not malicious.  I told her I believe she is a good doctor.  It was truly a pointless call, although hopefully it made her feel a little better.  Her “unconditional apology” at the end was meaningless.

I went online and cancelled the appointment the doctor had made for me, without consulting me, on the Friday before my birthday.   During this appointment we would presumably discuss the biopsy and set up the immunosuppressive therapy. I’d already told her I was unavailable that day, but it was, in her words, another misunderstanding.  

I sent a message asking her to send my biopsy report to my general practitioner.  When I heard nothing back I followed up 24 hours later with a call to the Patient Advocate and was promised they would send it right away.   My doctor read the biopsy report and confirmed there was nothing conclusive about staging, though it did show very little scarring to the nephrons, indicating it had not yet progressed to the point it was doing any permanent kidney damage.  

Sekhnet got me a referral to a very experienced nephrologist from her beloved doctor of more than 40 years.  We highly value this wonderful doctor’s advice and I was looking forward to a second opinion from a nephrologist who could answer some of my questions and refer me to recent research on the efficacy of the treatment I was being pressured into beginning right away.  I want to make a fully informed decision before allowing them to pump steroids into my veins the first three days of every other month, while I sit with other chemotherapy patients.  

My bills for two visits to this nephrologist, blood and urine tests, and the biopsy are close to $2,000.  Good news for me, in a way, because once I rack up $2,000 out-of-pocket my insurance will kick in and begin to pay part of my future medical bills.  When I mentioned the expense to the nephrologist she told me she had nothing to do with the billing, had no idea an initial visit to her was billed at $860.  I made some snide comment about corporate medicine and she promised to look into getting me some reduction on my bill.  It was a promise made in good faith, and, naturally, never followed up.

Anyway, to the issue of menschlichkeit I promised at the top.   When I called to make an appointment with the new, highly recommended nephrologist I was told that, since he was, as luck would have it, in the same practice group as the first nephrologist, that the two doctors would have to agree that I could see the highly recommended one, since I’d already been a patient of the first.  The mentor, I was told, had to have permission from his protégé and would have to agree to see me.   I wrote to the first nephrologist asking her to expedite the switch so that I could continue my treatment.  The following day she wrote back:  I have instructed my front desk staff.  That was on June 22, almost a month after the kidney biopsy.   

Each time I called after that to make the appointment I was told I’d need to be called back.  Each time I received no call back.  On July 13 I finally had a call from the office manager, only two days after the most recently promised call back.  She told me it was an apparently inviolable office policy, that no doctor in the practice group would see anyone who had seen another doctor in the group, under any circumstances.  

She brushed off my comments about the unethical three week wait to deliver this news, if the policy was indeed inviolable the first time I called, while I’d been trying in the meantime to make an appointment and being told each time that the doctors hadn’t yet discussed it.  She offered to refer me to other nephrologists outside the group, and wished me the best of luck.  I resisted telling her to fuck herself as I said goodbye.

My reaction was rage.  I wrote a letter accusing the doctor I’d been referred to of being unethical.  I figured to run it up the food chain at the corporation he worked at, pressure him into doing the right thing.  It was a stupid idea, although my doctor endorsed it, in fact, recommended it.  I was talked out of  sending the letter.  

I thought of the belligerent retarded man I’d represented years earlier in Housing Court.  He stood on his right to smoke crack, play loud music and bring prostitutes to the room in the nursing home he’d inherited a right to when his mother, who he apparently helped care for, died.   He was angry every time we were in court, left me angry phone messages, sometimes several in a row, between court appearances.  When I finally settled his case, with no admission of wrongdoing on his part, and preventing his eviction, the judge congratulated me.  

A few days later I had a complaint forwarded to me by the First Department’s Attorney Disciplinary Committee.  The letter gave me two weeks to respond in full to the charges or face a disciplinary hearing and possible sanctions including the suspension of my license to practice law.   I read the complaint thoroughly.   It had my name spelled right.  My office address was given as the Bronx Housing Court.  The box for the complaint was entirely blank.  I spent four hours composing the letter defending my professional name against a blank complaint.  I eventually had a letter back from the First Department dismissing the blank complaint against me.  

I figured there has to be a similar procedure to make a complaint against an unethical doctor.  I have no idea if there is.  And anyway, I was urged, more important for me, as a man with a serious kidney disease, to find a new nephrologist in the phonebook than to fight these unaccountable, defensive, reflexively united, never at fault pricks.  

Here’s where somebody being a mensch comes in.  If the original nephrologist was a mensch she could easily have reached out to me by phone or message.  She could acknowledge that things were not going smoothly between us and persuade her colleague to see me, even if only for a single second opinion visit. To her mind, this would be an admission of defeat, of having proceeded badly with a patient.  She has established that she is not much of a mensch.   Like I say, the mensch is a rarity.

What of the doctor highly recommended by his older, highly respected mensch colleague?  How difficult would it have been for him, out of respect for this colleague, if for no other reason, to have contacted me and asked me what the problem was?  

Too much trouble, much easier to have the office manager call me back, after weeks of misleading delay, and wish me luck with some new doctors.  I researched this senior nephrologist online and found only one comment about him from a patient.  According to the comment he did not return calls, did not provide answers to patient questions, was abrupt and dismissive.  How well he has trained his protégé!  

It is rare to find a mensch.   For years doctors routinely removed the breasts of countless women who came to them with early signs of breast cancer.  It was standard procedure at the best cancer hospitals at one time, a radical mastectomy.   It is no longer standard procedure, thankfully, as advances in science, more women in the medical field and a greater recognition of the importance of treating the entire patient, feelings included, emerge.  

In the meantime, I’m determined to have a very nice day, and to go fuck off for a while, before I compose the original letter I should have written to this apparent douchebag of a senior nephrologist.  On the off-chance, you know, that he was recommended to me by a mensch because he himself, in some hidden region of his non-reptile brain, has the repressed spark of acting like a mensch.  In any case, that unanswered letter will be a better one to send to the medical ethics committee, if such a thing exists, than either of the two previous attempts at a letter.

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