Why Doctors Don’t Come Clean To Their Patients

A True Apology - Make It Right

Brian Goldman, Leana Wen, Archie Cochran, are all doctors who dared to challenge the status quo.

When Leana Wen decided to become a doctor she was inspired by her childhood pediatrician, a woman who allowed her patients to know her, not only as a doctor, but as a person, showed a sense of humor, and treated them not as merely a body, but as a human being with dignity, relating to each patient person-to-person.

Dr. Wen went through medical school and residency with this role model in mind and when she graduated and became a doctor she never fully realized how insular and secretive a microcosm the field of medicine had become until she shared with a group of colleagues and merely proposed “why not be transparent to our patients?” This innocent question suddenly made her a target for a full frontal attack on her by those very people who were supposed to be her peers and supporters.

Archie Cochran, a doctor and a prisoner in a German prison camp during WWII challenged the status quo and the mystique that doctors often embrace when he realized that prisoners were lacking in Vitamin B12 and Vitamin C. Not only were other prisoners suffering from a mysterious illness but so was he. He has Marmite (an English bread rich in Vitamin C) smuggled into the prison. Informally he gives half of the prisoners B12 and the other half Vitamin C and their illness improves. He publishes his findings but feels that nobody will listen or care about what he’s discoverd.

Later a young German doctor discovers the material, is shocked this is happening, and says to his colleagues that something must be done; that this data is irrefutable and that it is actually a war crime not to provide vitamins to those prisoners. Next morning lo and behold vitamins show up at the prison.

After he himself had recovered in the prisoner of war camp, Archie Cochran later spoke before colleagues at a lecture in which he presented findings of a clinical trial he’d conducted on whether heart attack patients recovered better at home or in the hospital. The prevailing thought at that time said that patients recovered better in the hospital and that having them recover at home was absolutely “unethical!” In his presentation he initially told them his hypothesis that patients recover better in their own homes was wrong and that he stood corrected. There was an uprorious response to this announcement delivered with lots of hate hurled at him, denouncing him and in effect they called him an idiot, telling him he was killing people and to shut the experiment down….Only that’s not where it ends.

Once the din subsided he resumed his speech and proceeded to reveal that in fact he had not been wrong and that the statistics he’d read them were actually reversed! He explained that the study showed that people in fact recovered better in their homes than in the hospital. In response to this earthshattering revelation you could hear a pin drop; no uproar, no cheers, no congratulations, but instead a chill that permeated the lecture hall as his colleagues seethed in silent anger in their seats.

In this video by Tim Harford, a writer on economics uses the analogy of design of a product to illustrate why using trial and error in todays complex medical system is important, why doctors should not be put off by what they may view or be told are “unproven” theories or treatments, and why approaching the job with humility actually works better than to adopt a stance toward patients of omniscience and omnipotence.

Medical books and the long drawn-out and rigid standard of placebo-controlled clinical trials don’t always work when you’re working with real people in the real world, and a one-size-fits-all approach to patient care ultimately sells patients short. As Tim Harford says, “People are not machines. It’s not like fixing a car.”

When the doctor cuts patients out of the process and expects total “obedience”, “compliance” rather than a meeting of the minds with an aim to solve a problem he/she loses a valuable opportunity because even out of mistakes can come happy accidents, and ultimately important medical discoveries.

If what is written in the books is in fact wrong that causes improper treatment of patients for years. As one former paramedic friend said to me, “Bodies don’t read books.” This is why the doctor patient relationship and listening to the patient should come before any textbook. Just because a book says “If a patient has these symptoms you must do X” one shouldn’t apply this across the board as if it were a pat formula for all patients who have such symptoms.

Throughout history theories have been accepted by mainstream medicine and then decades or centuries later, dismissed as outdated. It is tragic that many pioneers in the field of medicine who challenged prevailing thought were persecuted for doing so, sometimes until death, and that many were never recognized for their important contributions when they were alive.

Doctors are expected to know everything and never make mistakes (not by patients but by their own peers). They are “kept in line” by their own profession, and outed for being non-conformists and trying empirical or off-label treatment approaches (as is often the case with doctors treating chronic Lyme Disease and Chronic Fatigue/ME patients).

When they expose real corruption in their peers, report them for patient abuse or neglect, and/or their place of employment or refuse to be a part of it their careers are often threatened and sometimes destroyed. What is done to patients by doctors in the form of gaslighting and character assassination is the direct mirror image of what their peers and employers do to them if/when they attempt to go out on a limb for their patient(s). It doesn’t even have to have happened yet to a particular doctor. Just the fear and unspoken “threat” that it could by virtue of urban legends and talk around the water cooler is enough for most doctors to “stay in their place” and too often fail to act in a patient’s best interest.

Drawing outside the lines can have dire consequences. This is made clear in subtle and sometimes not so subtle ways along the path of a doctor’s career. A patient may be left dangling and minimally or untreated for months and even years because a doctor is more afraid of the corporation that employs him or what other doctors might say or do to him than afraid that a patient may get worse, die, or that a family may sue.

Why? Because when conventional treatments don’t work sufficiently a doctor is often given the message (and sometimes directed by policy) by the employer he works for to do nothing. If he sides with the employer and does nothing and a patient dies, gets worse, or a family sues, he is shielded by the corporation he works for and they take the heat as his supervisor which legally is ultimately the responsible party, however, if he sides with his patient against the recommendation of his employer and or most widely accepted treatment practices of his profession it is highly likely his employer will either fire him or claim they had no knowledge of his actions and claim he is singly responsible should anything go wrong.

Most doctors in today’s “managed care” environment work for corporations, therefore they stay “on the safe side” often to the detriment of their patients. They become comfortable as puppets of the corporation in exchange for certain comforts and immunity provided them because of the power and wealth of the entity which employs them such as a Legal Department, Dept, of Patient Relations, Risk Management Dept. etc. The corporation may offer them some sort of 401K or retirement benefits, they don’t have to worry about overhead, nor do they have to hire office staff or billing staff and pay them out of their profits as they would if they were in private practice. They give up a considerable amount of decision-making power and autonomy in return for those perks…and oftentimes they sell their soul.

There is one unwritten rule that all doctors working for a corporation are expected to live by; to uphold the reputation of the corporation they work for. The employer may or may not officially put this in their contract, but the implication is clear and unmistakable.

The moment a doctor signs on to such an arrangement he/she takes on the face of the corporation. For the same reason that large gifts of money from special interest groups to state and federal legislators and people running for office are problematic, so is this kind of working relationship in which a doctor is “housed” within a healthcare company. From that moment onward a doctor has divided loyalties. It is likely that doctors in such environments are confronted with daily ethical dilemmas of one type or another, but as patients we rarely hear about them.

For the patients reading; how many of your doctors have openly admitted that their employer instructed them to do something they didn’t ethically agree was in your best interest? I doubt very many have. And as Dr. Leana Wen suggests wouldn’t it be better if they openly disclosed this to you, and said, for instance, “I agree with you that it makes sense to try this treatment but I’m afraid I would lose my job if I move forward to order it.” Only then could doctor and patient stay alligned, engage in effective disalogue, and figure out how to handle that obstacle. Instead what too often happens is that the doctor presents the circumstances very differently, refusing to accept valid reasons or proof offered by the patient as to why this would be a good course of action, denying the existance of a condition, falling back on a dictatorial or hostile stance, even questioning a patients’ sanity or motives (none of which are effective coping mechanisms in their work, and only serve to place doctor and patient at odds).

That said, doctors do have their part of the responsability to put their patients first. While as patients we can acknowledge that doctors have pressures placed upon them these facts do not excuse doctors from the responsibility for placing highest priority on the health, safety, and wellbeing of their patients. Whatever conflict-of-interest that may exist in their relationship with their employer they, not we have chosen that trade-off and it is up to them to find a way out of this divided loyalty conundrum.

I get it that they’re often scared to make a move on behalf of their patients for fear of retribution or retaliation from either peers or employer, but it is encumbent upon them that they refuse to trade our comfort for their own.

Gold Caduceus

The symbol of Caduceus, a staff  with wings and two snakes wrapping around it in Greek Mythology was carried by Hermes. In Roman Mythology it was carried in the left hand of Murcury who was said to be the messenger of the Gods (emphasis on the word, Messenger). Not God himself, LOL. Here’s an excerpt from that article;

“It is said that the wand would wake the sleeping and send the awake to sleep. If applied to the dying their death was gentle; if applied to the dead they returned to life.”

Another symbol, The Rod of Asclepius is often used to denote the field of medicine and it seems was the original symbol.

Nevertheless, the original message was supposed to be that doctors were given this responsibility by God, a mission to attend to the health of their patients. It was never meant for them to abuse the power that comes with the responsibility against their patients just because there are currently no legal consequences. It is a moral imperative. This message also comes through loud and clear in the Hippocratic Oath.

It is said that in order to change a person must first admit there’s a problem. When I was abused, bullied and defamed at Emory Healthcare I was only given empty apologies. “I’m sorry you’re not satisfied” is not a sincere apology. I tried to suggest a number of solutions including my being on their board of directors, getting involved in sensitivity training for their residents, and a number of other ideas but every one of my suggestions for conflict resolution was turned down. They weren’t interested in fixing the problem THEY created because they weren’t willing to take the first step in admitting there was a problem.

A genuine apology involves 3 important parts;

“I’m sorry”,

“It’s my fault. I was wrong”, and

“What can I do to make it right?” Then really doing it.

There are some doctors who got this right and then began a dialogue with patients to improve relations. Here is one of them. He says studies have shown that in addition to being the right thing to do, apologizing actually makes the risk of lawsuits less likely. Patients really are not wanting to sue and generally only do that as a last resort when a doctor absolutely refuses to accept responsability for his actions. In fact most patients just want the mistake or wrong decision corrected so they can go on with their treatment and go on with their lives.

It seems that the root of the problem lies in that there are too many middle-men between doctor and patient who have no business being there in the first place and that further confuses a doctor as to what his job description is and who it is he is there to serve. The power structure in too many medical facilities as it exists today encourages (if not dictates) that doctors sacrifice their patients’ best interest in order to save themselves in a hostile work environment where doing the right thing is frowned upon heavily.

In fact, doctors are actually reinforced for putting a patients’ best interest last, corporation first, and him/serself second.

Solution

In a word? Unbundling. Quite simply corporate-controlled healthcare doesn’t work in the long-term for most of those in it (except for those in top-heavy positions in administration who are making six figures or more). It doesn’t work for doctors, it doesn’t work for nurses, and it doesn’t work for patients.

Doctors must find creative ways to practice outside these corporations which now have bought and paid for so many’s silence and collusion. The cycle of abuse has to stop and doctors need to go back to working for and with patients as the profession was originally intended.

Sign the petition for a legislated system of accountability for all chains of command. This is just the beginning of a new system of healthcare.

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UK Man Exposes Pattern of Patient Blacklisting and “Violent Patients Scheme” to Divert Patients Who Disagree with their GPs

  Often medical blacklisting is done in more insideous ways and rarely in the literal sense of the word do you find it as a physical list. Blacklisting deniers commonly use this as a reason to doubt that such things … Continue reading

2017 Emory Electronic Records Security Breach; Why Patients Should Have The Right to Restrict Access To Their Medical Information

Yesterday I received a letter from Emory Healthcare notifying me that there had been a security breach affecting patients’ electronuc medical records and that I was one of the people affected. Two years ago after defamatory statements had been written … Continue reading

My Christmas Wish for All Chronically Ill Abused Patients

Warm Wishes

It’s been 2 years now since that fateful day I entered the ER of Emory Healthcare. Back then almost nobody else was speaking out publicly in blogs and/or video and although it was common knowledge within the chronic illness community that these kind of things happens, mostly it was only discussed in groups and on forums with little exposure to the open internet. Search yielded almost no trace of the undercurrent that was about to explode onto the scene as patients quietly compared notes. It seemed each patient this happened to was contained in their own little bubble of isolation and only 1 organization existed at that time to advocate on behalf of patients whom medical corporations targetted.

The mainstream media didn’t mention the thousands of cases that were routinely brushed under the rug and when approached tiptoed around the issue as though their bread was buttered on the wrong side of the law, so they dared not speak of it. That 1 organization that existed at that time was overrun with requests for help, not only from US citizens but from patients all over the world and its director was in the process of putting it on hold until she could complete a book on the subject.

Nobody else was really organizing around this insidious but deadly problem inextricably woven into the very fabric of our society, so it became my mission to get the ball rolling and start a concerted effort to change the law.

Court

For those of you just now subscribing to my blog and/or coming across it for the first time, a short re-cap. I began having new symptoms outside of my already diagnosed chronic illnesses that progressed very quickly over the period of about 1 year in 2014-2015. They became so severe that I ended up hospitalized for 11 days because of severe near syncopal episodes, blood pressure wildly erratic, insatiable thirst and the taste of salt in my mouth, lower GI spasticity, severe myoclonus, other abberant movements, weakness, spasticity, and difficulty walking.

While in that particular hospital I was treated for Dysautonomia (a dysregulated autonomic nervous system) a condition which likely may have been causing some or even all of those symptoms. One of the doctors there sat down at my bedside one day during rounds and talked with me about my dysregulated blood pressure and the other symptoms I was having and about treating it with IV saline. I had no idea at the time that that was an accepted treatment for dysautonomia. I had not yet read about it, but he explained that he had tried this for a few days when I first came in to test out if it would get the symptoms under control and found that I started to stabilize.

Infusion-IV

He went on to say that there weren’t alot of options to treat this autonomic dysfunction but that he’d noticed when he took me off the saline that my symptoms got worse, so he would like to put me on it continuously to see if I would stabilize again. I did notice that I had started feeling better for a few days but had no idea why. When he explained this to me it made sense and so I agreed to it.

I was grateful to have something that worked. He put me back on it and wrote the order for it to be continuous, and sure enough, after about 4 more days I again began to stabilize. I was able to eat again, the thirst subsided, I was able to go to the bathroom more regularly, and the near syncope and dysregulated blood pressure became more stable again. I figured if that’s what it took to keep me stable, then so be it.

What I didn’t know is that this doctor failed to document what he’d said to me verbally and although he documented the order for continuous IV saline infusion, he did not state the reason nor the detailed rationale that he’d given me that he had tried this (what they call in medicine a “therapeutic probe”, something doctors sometimes do as a clinical diagnostic tool in which a positive response to a given treatment indicates that their diagnostic hypothesis was correct).

At the time my muscular symptoms were presenting like ALS so the admitting neurologist (another doctor) began the process of looking into that as a possible diagnosis. By the time I was discharged they were still unable to diagnose what was wrong but the admitting neurologisy suggested I go to some major medical center such as Mayo Clinic’s movement disorder clinic, since the system where I had been going for healthcare previously had not been aggressively routing me to appropriate referrals and I was rapidly becoming more and more disabled.

She told me that their facility (a smaller system than where I was getting all my outpatient care) was not advanced enough to do the more involved testing that would be needed to find out exactly what was wrong. I was discharged on a Saturday, the saline order was not written for home health as I was told it would be by one of the attendings, and just a few days later I ended up back in the same shape as when I went in. I awoke one morning feeling intensely faint even lying flat on my back, and no matter how long I waited for it to pass it would not.

I ended up back in the ER, this time at the hospital where all of my outpatient doctors worked, but instead of stepping up and expediting my care the facility (unbenownst to me) began building a malicious case to discredit me in my medical records to cover up the mismanagement of my condition(s) now that they were aware of my rapidly declining condition.

Looking up at doctors after fainting

During that ER visit I suffered numerous human rights violations and nearing the end of my visit was physically assaulted and interrogated by an on-call neurologist who posited that there was nothing neurologically wrong (because I had not yet been given a diagnosis while I had been hospitalized at the other hospital, taking bits and pieces of the incomplete record from there out of context).

Soon it became clear that he’d been called in by administration to shake me down and to try to debunk me, not only the new illness(s) yet undiagnosed, but he pointedly questioned even my established diagnoses.

This was no legitimate neuro exam and as it progressed from undue roughness to an outright beating I was 100% sure that this was outside the standard of care and that he had not come to help me, but to maliciously sabotage me. In his mind I was wasting people’s time and resources and he was bound and determined to make me pay.

Bully

After he left the room he had his resident come in alone and slam her butt down on my foot (this is a very unethical practice that is done to find out whether a patient is faking). Not only was it reckless but misplaced given that although I was weak, I had never claimed to be paralyzed nor unable to feel, so it did hurt.

To make a long story as short as I can; the sadistic neurologist who’d abused me put libelous statements into my medical records and incited his resident and others to do the same, it got passed on from doctor to doctor, ruined the good working relationship I had with two other doctors I’d seen for years.

The corporation that employed these people refused to do anything to correct the records, discipline those who acted improperly, nor to protect me and my record as I had requested from any further damage.

My case became highly political and administration itself went after me using  numerous people who worked for them to carry out their corrupt agenda. I was mercilessly harrassed by letter and even got a threatening phone call, my care suffered more and more because of the firestorm of loose gossip flying around the facility about me, administration admitted they’d been reading this blog and when I wouldn’t take all this lying down they got their Chief Medical Officer to send me a letter kicking me out. (Note that this is the largest and most powerful healthcare system in Georgia).

The libel in my medical records continues to hurt my ability to obtain unbiased medical care long after I’m gone from their clinics, and thus my health continues to decline.

I’d filed all pertinent grievance procedures and went through every proper channel,  but to no avail. This corrupt facility got off at every turn.

Why? Well here’s the answer in a nutshell;

1) Regulators base their investigation solely on what’s written in the record regardless of whether it’s accurate, inaccurate, or blatant lies!

2) Apparently the law has a loophole in it which says basically that a doctor or facility can get away with libel in a patient’s medical record as long as the facility’s administration answers the complaint by stating that they “find the record as written to be true and correct.” They aren’t even required to have personal knowledge of the validity or invalidity of the defamatory statements in question. They can merely say it’s true with no proof whatsoever. 

The above clause in currently law directly conflicts with federal anti-discrimination laws and I argue is therefore unconstitutional. Constitutional law was supposed to override administrative policy, but it was not enforced.

In addition; the facility receives federal funding and therefore cannot legally retaliate against by refusing service to a patient for making an official grievance, yet that is exactly what they did to me.

These two key points are what regulatory agencies ignored, so it became clear to me that the law must be made much clearer than it currently is worded, and that this particular type of abuse; gaslighting and blacklisting of patients must be given it’s own designation as an unequivocal hate crime.

I have set about deeply researching this topic to find out just how common this is and a petition was written with my story and my proposed legislation which would fill the current loopholes, and now over the past few years patients who have been abused in these ways are coming out in droves!

You are not alone

To read, sign, and add your story to our petition please click here. Your signature and story will be auto-forwared to Secretary Sylvia Burwell of Health and Human Services Committee (US Congress). Please be as specific as you can describing exactly what happened to you, state when it happened approximately (don’t just say something vague such as “This happened to me too” or “I have been abused by doctors” or “I have been blacklisted”, tell what was said, direct quotes if possible, and what was done if there was abuse and/or medical neglect. This way statistics can be compiled about specific types of human rights violations. We need to band together as a community and continue to hold those in positions of power accountable, to insist that state and federal regulators regulate, and that these inhumane and destructive practices are brought to an end.

This is my Christmas wish; not only for myself, but for all patients that similar atrocites have happened to, and those who may become victims of this type of abuse in the future. We must change and strengthen our civil rights laws! 

I’ll be participating in #Blogmas this year. Over the next few weeks I will feature 1 patient’s horrendous story on this blog every week to raise awareness of these abusive practices in medicine.

Please share and leave a comment here on each corresponding blog entry so that we can continue to raise awareness and push our public officials/legislators to enact concrete solutions now! I hope to live to see the day when not one more patient is gaslighted, blacklisted, bullied, discriminated against nor abused by the medical establishment.

What better gift is there than to make it possible for patients to obtain the respectful and compassionate care they need for their medical conditions without fear, and to give them back their dignity.

This is my Christmas wish!

girl praying

Emory Healthcare Denies Kidney Transplant to 2 Year Old Based on Father’s Parole Violation

The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.

Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.

What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family  was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.

Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path.  Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.

One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late

A local news team has covered the story. See this footage below;

At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.

 

Plugging The Loopholes in Civil Rights/Patients’ Rights Laws

All too often the mistreatment of patients with disabilities/medical conditions/chronic illness is regarded by society as a lesser offense (or not an offense at all) and its survivors’ resulting trauma not acknowledged by the general public, including those agencies whose … Continue reading

Art is My Therapy; How One Woman Deals with Trauma from Abuse By “Medical Professionals” and The Daily Grind of Chronic Illness

I’ve been so busy working on the out-of-state referrals to upper level clinics and just living my life to notice why I’d been crying more lately and thinking more about the incident at the ER on December 3, 2015 and … Continue reading

GA Medical Board Fails To Take Disciplinary Action Against Doctors Involved in Abuse and Corporate Cover-up

It was no big surprise when I received the long, white envelope with the Georgia Composite Medical Board logo on it that the outcome was a bust. Georgia’s track record for disciplining doctors for infractions is especially bad compared to … Continue reading

Trump Presidency Bad For People with Chronic Illness/Disabilities

capitol-diagram

Tuesday November 8th’s 2016 political upset was a wake-up call to all of us in the chronic illness community that we have our work cut out for us when it comes to our quest for respect, equal representation, and full inclusion (which includes having our medical needs met in a timely manner).

The worst of it is not just the opinions espoused by Donald Trump, but that these same bigotted opinions appear with such frequency among average citizens in modern society, and that they can and do drive the making of public policy; AKA…the rules that govern our real lives! 

Despite that many are uncomfortable discussing and even thinking about politics, the reality is that where the rubber meets the road policy gets made with or without our input.

stubborn-as-a-mule

The challenge in the face of such a punishing blow as we saw earlier this week is to stay engaged and not give up the good fight for what we know is right. Better that policy be created with our input than without, and under our watchful eye than in the secrecy of smoky back rooms.

Ari Ne’amen, the President of Autistic Self-advocacy Network, calls the election of Donald Trump “a disaster” and predicts that if Trump actually follows through with the things he has stated he plans to do once in office the risk for people with disabilities is serious and very real.

We already know that one of Donald Trump’s big goals is to “repeal Obama-care” the Affordable Care Act. Along with this is the Medicaid expansion for people whose income is too low to qualify for the Affordable Care Act Insurance Market, large numbers of working poor who otherwise are cheated out of health insurance benefits by greedy big corporations who employ them often at starvation wages, cut their hours, and pull other ploys to avoid providing them any long-term job stability and financial security just to pay the top brass more. He has even stated that he’d like to do away with a minimum wage altogether! (Clearly he’s not looking out for the American worker’s best interest, but instead the interests of big corporations).

if-there-were-no-minimum-wage-employers-would-pay-nothing

We already know that Donald Trump is unsympathetic/unempathetic to the plights of undocumented immigrants who have often had to flee deadly drug cartels and other terrorists on an emergency basis to come to the US for safe refuge.

His comments regarding Latinos are especially heinous referring to them in such derrogatory terms as killers and rapists , casting aspersions upon the Mexican Government as if to imply that infiltrating our country with unsavory characters were their intent! 

He kicked a New York Times reporter of Latino descent out of an Iowa news conference and had him forcibly removed, and he has made derrogatory remarks about former candidate Jeb Bush implying that he was unfairly biased for Spanish speaking people because his wife was Latino. Most distubing of all anti-Latino comments was his response when confronted with a situation in which a Hispanic man was beaten in his own home by Trump supporters; stating that his supporters were “passionate”.

No, I’m sorry to break it to His Highness, but THAT’s not merely “passionate”. THAT is a HATE CRIME! “Passionate” is peaceful protest, or a civil debate of the issues.

His blithe response and gross minimization regarding this act of discrimination, hatred and violence is dangerous in that it has the effect of normalizing something that should never be socially acceptable in a civil society! It tells others out there who do not want to control their anger and who believe the rules and laws don’t apply to them that violence is OK as long as you are doing it in the name of a belief (however instrinsically immoral it may be). The now President Elect almost seemed to gloat over the fact that such violence could be passively incited in his name.

We must ask ourselves; if he’d turn his head to this sort of hate crime how many other civil rights issues will he turn his head to as President?

And it’s not only immigrants he disrespects. It’s women, too. I think most of us have seen at least a few off-color comments he’s made on the news or on Twitter, coverage of his intention to reduce a woman’s right to free choice and other equal rights issues for women such as opposing equal pay in the workplace, but you may not have been aware of this very graphic video which caught blatently sexist and denigrating comments he made about/against women here .

trumps-denigration-of-women

Notice here that Trump dismisses the severity of his salacious remarks and fails to take responsability for his clearly treating women as though they were objects to be conquered for his own narcissistic gratification. He only apologizes that anyone “was offended,” not that he did it. Sound familiar??? It’s the same sort of non-apology Emory Healthcare issued in their letters which stated “sorry you aren’t satisfied.”

And speaking of big corporations; Trump has on numerous occasions stated his intention if elected to roll back regulation on big corporations, so it is likely that what happened to me is not the last time this atrocity will happen to an innocent patient, and the offending healthcare corporations will get away with it. If anything our country is in need of more regulation of big corporations; not less!

corporate-greed

They’re already running rough-shod over us individuals and the fox is charged with guarding the henhouse leaving big gaps in justice for those with little power in our society. Funding has already been cut to state and local programs such as Legal Aid, and to federal programs charged with going to bat for people who find themselves discriminated against and stuck out in the cold.

As I have outlined in earlier posts; people with Autism/Aspergers and other little-known and poorly understood conditions that frankly doctors and healthcare systems would rather pretend don’t exist than to treat receive short shrift when it comes to services. They are considered costly and time-intensive and therefore a bother to such corporations, so there is much pressure to down-grade the level of care to individuals with such conditions, and if that doesn’t fly they are dumped summarily with very little public outcry resulting and next to no real advocate.

Considering that the numbers of people with many of these (as corporate healthcare sees them) “nuisance” conditions are rapidly becoming the majority and (it goes with out saying) these are a formidable voting block. This is what we must impress upon the masses and upon Congress in our efforts to educate and consciousness-raise.

While our kind may still be considered less crucial/less important and our views less influential in forming our country’s priorities, we are a rapidly growing segment of the population and one day soon we will be a demographic that politicians wish to court.

Trump seems to have a penchant for insulting people with disabilities employed by the media. I guess deep down (well not so deep really, LOL) he doesn’t believe that people with disabilities can be strong contributing professionals of news agencies.

During an NBC News interview he slammed a columnist, Charles Krauthammer, who is paralyzed from the waist down specifically using his disability as the butt of his mean joke; “Then I get called by a guy that can’t buy a pair of pants, I get called names? Give me a break.” It wasn’t enough for him to insult the man’s stance on the war in Iraq and other topics, and to call him “underrated,” but to attack his having a disability and his needing help for that disability is beyond the pale. 

If anyone has any doubt that a Trump Presidency is harmful to the interests of the ill and disabled you have only to watch this clip in which he mocks in one of his speeches the spasticity in a reporter’s hands, Serge Kovaleski who has arthrogryposis, a joint condition.  

He later goes on to accuse him of “grandstanding about his disability.” Further, he questions “his level of intelligence”, painting him as a nobody that is too unimportant for Trump to remember. Nice attempt at gaslighting, Trump, but a big fail; the sarcastic impression shown in the above video speaks for itself.

Pretty appalling, huh! You might expect this kind of juvenile banter from a prepubescent hamming it up and trying to garner some street cred with his friends/peers by picking on those he views as easy targets, but not from the (now) leader of the free world (soon to be alot less free than before if we don’t stay on task in standing our collective ground steeled against the inevitable attempts to cut corners on those he deems not viable enough). 

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Trump’s assault on disabled people isn’t even limited to his liberal detractors.

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Even veterans with disabilities have been subjects of his particular type of abuse, including John McCain about whom he openly stated that he didn’t understand why people considered him a war hero after being captured and held for years in a prisoner-of-war camp, forced to endure horrendous and permanently crippling torture. Trump’s audacious comment that he “prefers soldiers who were not captured” is another telling remark of honking disrespect and lack of empathy which gives a clear indication of his values, and motivations.

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It strongly hints at his predatory and orwellian view of the haves versus the have-nots; the viewing of the underdog as somehow less viable, therefore less deserving than his more advantaged counterpart. His singling out of various groups to be badly regarded thus badly treated is another version of the concept of Untermenschen; a term coined in Nazi Germany during WW II; (translated: Under Man, or sub-human) made new again.

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The type of thinking Donald Trump engages in is of the same mind-set espoused by Hitler and other such dictators who went on to carry out their horrendous bias in policy. It seems I am not the only blogger who sees that parallel!

Michelle Obama stated it very accurately in a speech made earlier illustrating why Donald Trump is wrong for America.

She says; “Maybe it’s easy for him to mock people with disabilities because he’s unable to see their strength and their contributions.”

That, my people, is the root of discrimination; the inability to see a certain demographic’s value and the inability to view them as bringing something important to the table.

This man clearly lacks the maturity and seasoned professionalism (not to mention the experience) required for the job of President of the United States of America, and much more than merely annoying, his rhetoric is dangerous to those who due to medical conditions require accommodations in order to have as much quality-of-life as possible. In politics, as in life, one might be able to con (or buy) one’s way into a job, but doing the job day in and day out is a whole other kettle of fish! 

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It’s appalling that anyone would want somebody like this to be President, and just as appalling to hear some of the excuses being generated for his prejudices and blatant disrespect for those who are less advantaged than he. (Note that he is constantly telling us how wealthy he is. And how does that at all qualify him to run the country which includes mostly people who are not wealthy and whose lives in no way resemble his?)

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Maybe in time those who voted for him will see that this was a big mistake and that in the end this is not a man who represents their values, and maybe they will move for a reversal. (I hear that Michael Moore predicts he won’t last the 4 years). Only time will tell, but those of us who’ve known this all along must continue to shine a light on the humanity that is lacking and the restoration of which is so badly needed, and keep working to improve things for people with disabilities/the chronically ill.

For those who are interested in an update on me; I will get one up soon. For a number of reasons I have found it hard to write over the past month. I had a spoon left tonight and just felt that this topic was screaming to be put down on paper given the timeliness of the election, as its ramifications affects all of us.

 

In The Aftermath of Emory’s Wreakage; Still Sick and Essentially Untreated. What Now?

 

A photo by Matthew Wiebe. unsplash.com/photos/U5rMrSI7Pn4

Despite that my son’s surgery and his doctors’ dedication to providing him the best care giving me some hope that there are doctors out there who are kind, ethical, and want to go the extra mile for you, there was still one pesky problem that wouldn’t resolve itself spontaneously; that of the tainted medical records from Emory.

Although I’d tried to put it out of my mind, the very real danger that the libel contained in these records may continue to do damage to my reputation outside the offending system and thus prevent my receiving care soon enough to prevent dire consequences was and is a very real danger.

As I sat across from Dr. P. the new GP, a woman of East Indian descent (most likely second generation) who was young enough to be my daughter I fought through the horrible flu-like aching in my muscles, weakness, and feverishness to engage her on the topic of my referral to Vanderbilt after having left numerous messages with the office to obtain the current status of the process and to try to find out if, and when she’d fill out the necessary paperwork. I’d recently been advised from one of the receptionists on the phone to obtain 3 release of information forms; one addressed to Emory for her to receive, one for Vanderbilt, and another for something related to Piedmont’s records.

The disjointed and partial communication via several different office staff when I’d called in over the past few weeks was hard to decipher and some was contradictory, merely stating that as far as they understood I didn’t need a referral and that I could refer myself. Now after given my latest instructions for these 3 seperate release forms I wasn’t entirely sure which records they needed released and what the doctor would think, and then do after she read what was inside. I had decided I didn’t want to do anything hasty and wanted to bring a copy of my own and discuss with her what she thought would be relevant and what not necessary before releasing such bombshells into Piedmont’s system, nor to the out of town specialists. While the poisoned pills contained are complete lies and have no basis in truth the infectious and alarming nature of such coded language passed on from doctor to doctor can and does put my future health and even my life at risk each time a new doctor might read such derrogatory comments written under the guise of “medical opinion”.

As I sat in my wheelchair facing this new doctor I wondered why now it was suddenly so imperative to her that she have these records which contained so little of clinical use and yet had so much potential to destroy my future. What was once a mere suggestion was now presented to me as an ultimatum, and I don’t take well to ultimatums. If this was her idea of forming a good solid doctor/patient relationship and inspiring trust she had a very strange way of showing it.

A feeling of extreme aversion came over me and with it an anger at myself for being so weak as to be at all pressured by it. I really wanted to just say “No way! Forget it! You can do the tests that have been done all over again but you’re not using these records!” but then what if this time she really was going to follow through? It was a total crap-shoot as to whether this would get me to where I needed to go or whether this throw of the dice was going to lose me the farm. It was a no-win situation, and in my estimation, a bad risk either way.

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Now, even more ill than I was a few weeks ago I weighed my options and neither looked good. None of the other GPs I’d interviewed who seemed at all compatible were anywhere near writing the referral and one had wanted me to find yet another local neurologist and for him/her to be the one, tacking on God-knows-how-much more delay time onto my diagnostic process (and thus to my treatment).

Dr. P. waved the form from side to side in front of her. “You know” she prefaced, preparing for a fight with a rather aggressive offensive maneuver, “I don’t have to fill out this form.” Then testing the water further, “I could have said…Ya know what? No, I’m not filling this out…”

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“Oh yeah?” I thought internally? “Well guess what, miss smarty-pants…then what’s my incentive to stay here one moment longer?”, the words flooding my mind so close to the tongue I could taste them. But the lack of any real incentive for me was exactly her game plan and it was more stick than carrot. Behavioral conditioning 101; that may gain compliance from the patient in the short-term but at much greater cost than benefit to the relationship as a whole.  In some respects her approach was Machiavellian, yet Napoleonic in its delivery. “

…but I’m doing it because I care”, she finished. “That should show you something. You need to trust me” she pressed on. Somehow, actually it had just the opposite effect on me. The way I received her statement was more like the feeling one has when a person who has offended you apologizes and then immediately nullifies it with a narcissistic self-justification and the suggestion that it was you who made them do whatever wrong they’d done to you in the first place. At that moment I wasn’t sure which repulsed me more; her backhanded self-proclamation of benevolence, or my withering attempt to stand my ground.

Intellectually I knew that while not required by law, this was no extravegant favor she was extending outside her job description, but instead what any good GP should do for a patient (if it matters to her to deliver good care to her patients). Referrals and the paperwork that come with them are part and parcel of the routine work of a primary care physician being that they are charged with coordinating care across the various specialties that their patients need linkage to. However, her sense of her own power in this particular instance seemed to embolden her and at the same time shake my own self-confidence. I was back in that floundering zone again, the same one I’d been in the first time I’d met with Dr. V., and on that awful day in December when I was reduced to pleading for help at Emory’s ER, overcome by the uneasy feeling that I wasn’t “in Kansas anymore” but instead in an unfamiliar and quite scary place the parameters, and unwritten rules of which were near impossible to read nor comprehend. This is a place I don’t like, a brain-bending cause and effect that seems to make me lose all sense of time and space and send me down some weird rabbit hole. I grappled to regain my proprioception and perspective, losing my train of thought in my fluster to communicate.

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Had it been true compromise I could have lived with that but it wasn’t that at all. Had it come from a place of partnership, strength and dignity then it would had been compromise in the true sense, but this…this was not free choice but something else entirely. I felt disgusting and at the same time manipulated. As bad as it was that signing a release of the Emory records could ultimately mean curtains for me if it closed doors crucial to my survival, even worse than that was how it made me feel about myself. I knew it was far from an even trade but this inner caving and shutting down process just seemed automatic, almost robotic.

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I know what Bernie Sanders would have done. He would have stood firm on his position no matter his opposition. Suddenly I felt like a complete wuss and then hated myself for it just as quickly. What does one do in such a tough position? I really don’t know. Maybe there’s no easy answer. It was another one of those “Which do you want to keep? Your arm or your leg?” dilemmas, or rather “your life? or your reputation?” Without your life you cannot have a reputation, but without a reputation life isn’t worth living. Furthermore it could end up worse than a trade-off. I might lose both in the end. It seemed I knew what I really wanted to do but felt unable to do it, and no amount of logically thinking it through would help.

I’m trying to put a period at the end of these awful, incorrect, unethical, and libelous medical records but now I’m expected to drag them along from doctor to doctor. How could that possibly help anything?

A photo by Tom Butler. unsplash.com/photos/YOQDokJipFg

I leaned forward in my chair, put my head in my hands and let out a pained grimace and groan, made one more attempt to make clear to her that such action might really cook my goose in the hands of the wrong doctor(s), and then the rest of my resolve deflated like a spent balloon. She claimed that her license was on the line if she were to for instance include Dr. Vs last doctors’ notes, and not her first (probably more hyperbole than truth), stating that if she included any of Dr. Vs neurological record she had to include it all. I found her reasoning very strange and illogical. No doctor I’ve ever met thought like that, not even Dr. H. at his worst. It more closely resembled Dr. Bs new locked down approach than any of the other doctors, but I’m not sure even he would have included material in a referral or entered it into Emory’s record if he thought in his heart of hearts that it might do more harm than good.

Therein lies the crux of the matter; to do no harm. The hippocratic oath was relevent when it was written and still is today. Although its wording has changed over the years the spirit of the message is very clear and unmistakable. 

A doctor must not do anything he or she understands will hurt their patient. PERIOD!

Like I’d told Dr. Ps nurse, releasing libelous material written by those who are essentially your enemies is tantamount to volunteering a past supervisor as a reference at a job interview who has nothing good to say about you. “Would you do that?” I’d asked her, to which she had to in all honesty say “no”.  

“Well, there you go!” I replied. “It’s the same principle!” The nurse looked back at me wide-eyed and dumbfounded knowing I had a very good point.

“Don’t you realize that every time I have to show these records to a new doctor I’m re-traumatized? Do you realize the gravity of the risk involved, and how upsetting that is? This is not an irrational fear, but very real” I told Dr. P.

“Yes, I know” the doctor responded, “There is the doctor/patient relationship but it comes down to choosing between what’s best for you and what’s best for me and I can’t do something that could place my license in jeapardy”she said. Although I’m sure her assertion that her license was at stake was a gross exaggeration, therein lay the ugly truth with all lame excuses stripped away; defensive medicine!

A photo by Jeff Sheldon. unsplash.com/photos/o6Y9E-DdG6w

Realistically I knew that at least here in the state of Georgia nobody and I mean nobody is out to take doctors’ medical licenses (even in those instances in which they really should be revoked) so I know that state regulators are too busy to care about what parts of a patients’ medical record doctors are pulling to send to specialists and whether or not a doctor charts a patients’ symptoms. I wasn’t suggesting she break any laws but if in fact there is any truth at all to what she’s saying regarding this prohibition it is probably such small stuff that nobody would bat an eyelash, much less raise a major issue over it.

“My role is to look through and determine what’s relevant and what isn’t, and your role is to tell me your symptoms” said Dr. P. This, just after she’d told me that she thought it would be illegal for her to chart my symptoms since she could not verify them with hard proof, so then wouldn’t it be a waste of time for me to tell her symptoms if they hold no value in the chart? I went on to say that in many respects Dysautonomia is a clinical diagnosis anyhow, “and besides”, I replied, “how do you really prove near syncope and many of the other symptoms?” (short of completely passing out cold in her office at the appropriate appointment time). It was another impossible expectation, a bar that could never be met in the real world.

The look on her face told me that I was making valid points she could not dispute.

“It can take 8 years for a patient to obtain an official Dysautonomia diagnosis, precisely because these kinds of constraints make it next to impossible to diagnose anyone and everything’s so strict nobody wants to be the one to call it, and here in Georgia they don’t have the facilities for the few specialized tests that do exist, so what are you going to do? They could do a tilt table test but that won’t do much good unless it’s classic POTS (which I don’t think mine is). All you can do really is go on what the patient tells you.”

Dr. P. nodded in agreement. “I know.”

“I’m just so exhausted, I’ve been suffering alone with this already for at least 7 months, and then to add insult to injury it’s embarrassing to feel as though I owe each new doctor an explanation because of those people who took it upon themselves to sabotage my chart!”

“You don’t owe me an explanation. I believe you” she slipped in almost as an aside in the midst of our fast-moving conversation, her intonation lacking quite enough passion to be fully credible. I think I would have breathed a sigh of relief had I been convinced she meant it, but her painstaking caution throughout the office visit, and hesitancy to fill out the form until now was what gave me pause. The ER doctor in December told me that too, and then I found out she was only telling me those things to get some sort of compliance out of me; sort of a version of “You can catch more flies with honey than with vinegar”.

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I kept looking for signs of the real reassurance I needed from Dr. P. yet it seemed that just when the conversation veered toward a meeting of the minds it whipped away like a boomerang and I was once again grappling to obtain some semblance of unity that conveyed that we were truly in this together in amongst all this chaos on top of my muscles aching unbearably, the severe fatigue, the weakness, the low-grade temp doing a slow and steady burn that was documented that day by the nurse, the histamine reaction that was assaulting my sinuses, its accompanying systemic inflamatory response, and the awareness all the while that I was being expected to throw myself onto a live grenade; to essentially kill myself in order to save myself. Odd dichotomy there!

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She was pushing the trust thing pretty hard, approaching it more like a command than an invitation and it was precisely that method which made trust not possible. I told her that I couldn’t just snap my fingers and suddenly trust her, especially when she is insisting I do something I feel strongly is detrimental to me and could seal my fate and that after what has happened to me it will be a long time before I can trust any doctor. Trust cannot be a command nor an obligation I owe her as payment for something she does on my behalf in the course of performing her job. I’m a long way from convinced that she truly hears me and respects what I need, and pulling rank on me is not the way to get me to trust her. She has to earn my trust. “It’s a process” she said of the road from here to Vanderbilt. “You just need to have patience.”

“For how long?” I thought. It’s late and I’m not getting any  better overall. Yes my symptoms wax and wan and different systems of the body switch on and off like a flickering lightbulb and alternate, but the truth is that my baseline is worse, and this “process” cannot be open-ended if I’m to have a good or even fair prognosis. I know that and I’m sure any medical professional worth their salt understands the concept of early detection and treatment and its impact on outcome.

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When I see things working out in my testing and treatment, that she’s truly behind me 100%,  and when I feel that our words are not merely whizzing past one another’s ears then and only then will I trust her or any other doctor, for that matter. The office visit ended like it did the previous time with my telling her what I needed to be reassured, and her telling me in one form or another she couldn’t give me that, and then her saying “I feel like we’re going round and round.” Well yes, it would feel that way because for the most part I think our priorities and beliefs about our roles are very fundamentally different. The distinction between where she sits and where I sit is that she can walk away from what’s happening in my body…I can’t. I’m the one with the most to lose if things aren’t handled correctly from here on out. I’ve got it all on the line. She doesn’t.

A photo by Milada Vigerova. unsplash.com/photos/kT0tsYZ2YE0

Maybe this is the closest I can get right now to a match from those local doctors available to choose from after my extensive search of the metro-Atlanta area, but I really question whether this is going to work out in the long-term. I hope I won’t come to regret doing what she asked before I left the office that day. I’m still not really OK with it.

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I’m now in the process of filling out my section of the Vanderbilt form and in addition will fax her my BP stats from my November 2015 Piedmont hospitalization. Only time will tell what happens next.

A photo by Benjamin Combs. unsplash.com/photos/5L4XAgMSno0

Then the question still remains as to whether the whole thing actually gets submitted once I fax it back to her office and whether I’ll be accepted, and that’s still just the beginning towards coming home with a firm diagnosis.