Informed Consent

We live in an imperfect world, a point that needs no belaboring.  We like to believe that Reason governs human affairs, but most often we can trace the behavior of societies, groups and individuals, to fear, hatred, hopelessness, greed and other mostly non-rational impulses.  The great democracy we live in, for example, is currently presided over by a person who is not a clown as much as a menace.  He was put into office by the galvanized forces of fear, hatred, hopelessness and greed.  He cannot seem to control his impulse to lie.  Here’s Amy on a recent presidential lie the White House just admitted was a lie.  

You can go mad watching the news, dominated by this stubborn attention seeker, unless you believe, as up to 33% of our voting populace seems to, that we live in a time when minorities and poor people are completely out of control, rich job creators are being tortured by our government, the media lies constantly and that only good old fashioned law and order can “Make America Great Again.”  

Going mad is not the best option, at least not as far as I can see.  I’ve made it my daily practice to try not to go mad, no matter how tempting it may be to go there.   One form of this daily practice is writing, in detail, to make whatever I am dealing with as clear as possible, to myself and to anyone reading.  

Transparency, and its deliberate denial, has long been a big issue with me.  It comes from a childhood where blame was shifted on to the children for the problems of adults.  Perhaps my father was incapable of answering my anguished question about what happened to grandma and pop’s twelve siblings (shot in the neck in a ravine, as it turned out) but it was wrong of him to blame me for being anxious about it.   If Reason is to guide us in trying to live reasonable lives, we have to have the information we need to consider things fully and make reasoned choices.  

We have that great phrase from the Author of Liberty, about ideal government: “deriving their just powers from the consent of the governed.” That has been changed slightly in practice, if not rhetorically.  A more accurate statement in 2017 would be “deriving their indisputable powers from the acquiescence of the systematically manipulated.”   Our elections are decided by a plurality of voters casting votes after watching fantastically expensive advertising campaigns.  The winning product is the one with the most effective attack ads on the rival product.  The government that results from this process hardly amounts to one ‘deriving its just powers from the consent of the governed’.  

It is a mark of patriarchy to rest on its right to simply be right.  No discussion is required, if one party has all the power and the other party has none, when the powerful party declares “because I said so.”  You cannot give informed consent if you are not informed.  There is nothing mysterious about this formula.  

As in the larger society, so it goes in individual interactions. If patriarchy is the final word, from top to bottom, and you have a problem with that, you are the one with the problem.   The impulse to be right is a powerful one, and we are all conditioned to argue that we are right whenever we feel challenged.   There is a more merciful orientation, true, and the world would be better if more people operated under it, but that is not the problem of patriarchs.

I called the National Kidney Foundation’s helpline.  Marjorie was great, though, in her own words, not very knowledgable about anything but the basics.  She’d never heard of my idiopathic kidney disease, for example.  She was pleasantly surprised to learn that up to 40% experience a spontaneous remission from this disease of unknown cause.   She told me that most nephrologists, going by what she hears every day, are arrogant jerks.  She said the profession apparently attracts these types.  I told her my experience did not contradict this.  

Here is my problem with the insecure, defensive, arrogant jerk who was treating me, until two months ago.  She did not feel the need to answer questions, was dismissive, manipulative, untruthful, incapable of sincere apology.   Aside from those things, which tend to increase a patient’s stress level, I’m sure she is an excellent doctor.  My biggest problem, now that I have learned much more about this disease and proposed treatments, is her refusal to give me the information I needed to make an informed choice about a side effect-rich course of IV steroids and toxic agents designed to shut down my immune system.  This therapy is recommended only for high risk patients, all others are treated with supportive therapy and counseled about diet and exercise and watched for signs the disease has progressed or begun to wane.

I wrote this, earlier, to send to this gender-neutral asshole nephrologist, for my physician friend’s feedback:

You seem to have concluded that I am a high risk idiopathic membranous nephropathy patient and that therefore immediate immunosuppressive therapy is necessary.   I’d appreciate if you could set out the factors you considered to determine that I am in this high risk category, as these were not explained to me in any detail.

Thank you

Full transparency, which would have called for a “Fuck you” instead of “Thank you” at the end, must sometimes be sacrificed for the greater good.  In this case, I need to know what tests and other factors she considered, in the absence of the standard 24-hour urine test, to determine that I need to begin a chemotherapy regime immediately. 

We all tend to phrase things in terms of our own concerns.  I don’t mean to keep harping about my kidney disease, although it is on my mind.  It serves as a perfect metaphor for many killing situations that are just part of the status quo in our competitive, materialistic USA! USA!!!   If you are not afflicted by a serious disease, the many problems of Obamacare, the calls for its repeal, are abstractions, troubling though they may also be.  If you are unable to get treatment from any of the highly recommended nephrologists you’ve been referred to, doctors allegedly in your insurance network, you are, as they say: fucked. 


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