medical ethics

A Crisis of Responsibility in Modern Medicine

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Sloshing around in my brain over the last several months has been the notion that science, especially medical science as it is currently contrived, is suffering from a great crisis of responsibility. We see the lack of responsibility over and over again in the all-too-frequent, multi-billion dollar settlements and fines against pharmaceutical and medical device manufacturers. Neither the injury settlements nor the fines admit culpability; not from the scientists who developed the drug, not from the manufacturer, the salesmen, the ad men, or anyone along the production chain. We see no culpability from regulatory agencies who approve and, in many cases, market these medications. Neither the physicians who prescribe these medications nor the insurers who finance their availability are responsible either. No one, it seems, is ever responsible for medication-induced injuries or illnesses; a manifestation of magical thinking that makes the dark ages appear positively rational.

In financial terms, these settlements represent the cost of doing business, no more or less important than any other cost. Since there is no admission or assignment of responsibility, the drug or device in question remains on the market, and the cycle of injury, lawsuit, and settlement, begins anew. If enough time passes, the treatment in question becomes inured into evidence-based medical practices. The side effects are expected but disregarded. In much the same way as the settlements disregard responsibility, the side effects are simply the cost of doing business, an acceptable cost at that.

Bathed in the Safety of the Familiar

Indeed, the more familiar a drug becomes, the less we recognize that it is a medication at all. Think birth control pills, NSAIDs, and even antibiotics, so pervasively used, we often forget these are medications with actual side effects. Our familiarity with these drugs breeds a false sense of safety. We trust all that is known about these drugs, is all that can be known. We assume that after 20, 30, 40 years or more on the market, there would be sufficient time to reveal any risks. We forget, however, that more often not, we never bothered looking.

That is the thing about familiarity, it breeds complacency and a false sense of understanding. As Ignaas Devisch and Stuart Murray write in their brilliant deconstruction of evidence-based medical practice:

“There is something sinister about familiar concepts … The more familiar or ‘natural’ they appear, the less we wonder what they mean; but because they are widespread and well-known, we tend to act as if we know what we mean when we use them.”

With familiarity, it is easy to abdicate responsibility. We are familiar with medications, and therefore, the side effects must be flukes, anomalies, chance events. How can anyone be responsible for a chance event?

They cannot.

And that is the problem.

Somewhere, somehow, we’ve bought into this model of medicine where familiarity equals safety and efficacy, where ill-health comes by chance, and any evidence to the contrary is met with a deeply ingrained and willfully sustained ignorance. We find the roots of this sinister familiarity across all of medicine. We think we know what disease is and is not. We have meticulously defined and categorized hundreds, if not thousands of diseases, (save except the iatrogenic illnesses that we are loathe to recognize). We have defined gold standards by which to assemble the truths about these diseases and determine the best courses of action. We know all there is to know about many of them, and what we don’t know, we often willfully dismiss as unimportant or cleverly attribute to the idiopathy of random chance.

The Rise of Random Events

We see evidence of this everywhere. Take, for example, the certainty propounded by the authors in a recent study published in the esteemed journal Science (below). Cancer is a familiar topic, one that researchers have been studying for decades, and although we have made great strides in increasing awareness about cancer, identifying it early (before it is actually cancer and requires treatment in fact) and even some progress in surviving cancer (though that is debatable), we know almost nothing about preventing it. Our increasing familiarity with this disease process has bred a sinister type of ignorance – one that thinks it knows all that can be known; an ignorance completely unaware of its own limitations. According to the study’s authors, what we don’t know can be chalked up to random chance.

“Some tissue types give rise to human cancers millions of times more often than other tissue types. Although this has been recognized for more than a century, it has never been explained. Here, we show that the lifetime risk of cancers of many different types is strongly correlated (0.81) with the total number of divisions of the normal self-renewing cells maintaining that tissue’s homeostasis. These results suggest that only a third of the variation in cancer risk among tissues is attributable to environmental factors or inherited predispositions. The majority is due to “bad luck,” that is, random mutations arising during DNA replication in normal, noncancerous stem cells. This is important not only for understanding the disease but also for designing strategies to limit the mortality it causes.”

Here, the researchers are so entrenched in the current and very familiar paradigm of cancer research, that any evidence to the contrary can mean only that the nature of this disease process is incomprehensible or random.

To an outsider, some obvious questions arise, along with more than a little indignation and disbelief. Upon reading their work my thoughts:

Really? Cancer is caused by random chance? And the rise in the rate of cancer over the last generations is random chance also? It has nothing to do with the toxic soup we are born from, bathed in, and live within, breathe, and consume? It has nothing to do with medications or vaccines adducting to DNA, limiting DNA repair, and/or totally dismantling mitochondrial structure and functioning? Cancer has nothing to do with the medication and toxicant-induced epigenetic damage or nothing to do with a lifetime of heavily processed, calorie-rich, nutrient-poor, food-like substances? Nothing to do with any of that? Just random chance?

Fealty to the Shrine of Our Hubris

I have to say, attributing cancer to random chance is one of the most stunning combinations of godlike hubris and willful ignorance that I have ever observed. Equating cancer or anything else in medicine to random chance assumes that all appropriate questions have been asked and answered, all of them, every last one of them. It assumes that those asking the questions and the tools employed to find those answers are flawless and hold no biases. It assumes that everything that can be known is already known; that the science is settled in some way, and that all we can do, as mere humans, is to figure out how to mitigate the aftereffects. I don’t know about you, but I think this is an absolute load of crap.

If cancer or any other disease processes are caused by random chance, then we have no responsibility in either the initiation or prevention of disease; no personal responsibility for the lifestyle choices we make, no corporate responsibility for the myriad of common medications that are likely carcinogenic or the environmental chemicals that are known carcinogens. If cancer is mostly random, then we have no impetus to identify and then eliminate the root causes of cancer. The only impetus is to detect early and treat once recognized.

Define cancer as random, define drug side effects as random, define any illness as random, and we summarily abdicate all responsibility for that illness and foreclose the possibility of prevention. Worse yet, we foreclose upon knowledge in favor of a fantastical state of willful ignorance, where no one is responsible for anything.

Absolution: Is That Really What We Want From Our Physicians?

The lack of responsibility and human agency in health and disease absolves us from making difficult choices – smoke, drink, eat garbage – it doesn’t matter. Disease happens randomly. It is beyond our control. We might as well live it up.

Oh, but when it does happen when we are randomly struck by the disease gods, no worries, there are more pills for that, familiar pills, many that have been in use for decades; so familiar that their safety and efficacy are not questioned.

When those pills initiate side effects, even severe ones that cause death, well, because we have abdicated all responsibility, those side effects too must be seen as random and unattributable to any one person, medication, or institution. And this is where our previous trust in the randomness of disease inevitably kicks us in the butt. When side effects happen, when cancer strikes, and especially when these events happen in clusters where obvious associations between a drug or an environmental toxicant and the disease emerge, we want someone to be held accountable.

The problem is when we abdicate responsibility for our own choices when we fall prey to the unquestioning safety of the familiar, and when we buy into the random events theory of disease, there can be no culpability – even from those who are clearly responsible.

Kick and scream as we might, unless everyone assumes at least a modicum of responsibility, no one is truly responsible for anything. Encouraging ignorance and freedom from responsibility – don’t worry, be happy – is a great sales strategy and an even better method to garner political and ideological power, but it doesn’t bode well for health and well-being (or really anything that has to abide by laws of physics). And it is certainly not a model for medicine or medical science.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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The article was published originally on Hormones Matter on October 7, 2015. 

Modern Medicine, God Particles, and Ayn Rand. Oh My.

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Ever wonder why so many people are so sick with so many different chronic and debilitating conditions? I do. In fact, I think about it all the time. Much of the last several years have been spent interacting with individuals who are ill, sometimes desperately ill. For these individuals, modern medicine has failed and failed miserably. Indeed, many have been cast out of traditional medicine altogether, their illnesses deemed too complex to solve. For all its technical sophistication, modern medicine falls decidedly short when it comes to the complexity of functional illness. The disease processes that can emerge from a myriad of different variables, evoke complex and cascading metabolic reactions and require more than a magic pill, device or exquisitely executed surgery, flummox even the most capable physicians. It is easier to label those diseases psychogenic or psychosomatic and those patients as difficult – you know crazy.

What if these patients aren’t crazy? Or what if those behaviors colloquially deemed crazy, are really just the tip of the illness iceberg?  What if the seemingly unrelated, often unusual symptoms, even those that evoke symptoms of crazy – of psychosis, of unremitting and misplaced anxiety, of soul searing sadness and depression – what if those are simply symptoms of a greater illness? Absent trauma, psychiatric symptoms don’t simply emerge from nowhere. Are we missing something when we dissociate emotional, cognitive and other ‘psychological’ symptoms from the totality of what are perceived to be the organic diseases? You know the ones that we can see with our own eyes (aided by high tech imaging or microscopy, but seen nevertheless), or feel with our hands, or smell, or in some other manner, sensibly perceive – diseases that are real and material in nature.

While modern medicine has done wonders with acute and emergent care and is brilliant in its capacity to design and implement increasingly sophisticated technological innovations, it falls short in the face of the complexities of functional, non-linear, apparently non-material systems. The systems at the nexus of un-massed matter operating within a fluid and infinitely changeable medium that appear beyond our calculative perceptions and defy the hard and fast material compartments into which we so want them to fall. In medicine, we have yet to recognize that there are few simple and separately controllable cause/effect relationships. We have yet to realize that there are no silver bullets, no magic pills or surgical procedures able to stop a multi-layered feedforward cascade; especially since no one is looking.

Blame It on Ayn Rand

And no one is looking, not because we are limited by intellectual capacity – the Higgs Boson, for example, reminds us of what is possible intellectually when we appreciate the mystery of things. No, we are not limited by intellectual capacity, but by a pervading lack of interest. Medical science (and politics and economics) have been wrapped up for decades, it seems, in some warped notion of a physics-defying magical universe of Ayn Randian extremes where man is separate unto himself; where he is both totally in control of all things that matter (and of matter itself) and his pursuits are completely disconnected from any ill-effects his actions evoke.

Ayn Rand? Really, Chandler, you’re bringing in Ayn Rand? Yep. I cannot help but thinking that our ridiculously compartmentalized approach to modern medicine, the one that fails to recognize the connection between systems, that believes ever so strongly in its ability not only to perceive and know correctly the totality of human health and disease but to manipulate and control it without repercussions, without consequence, is an offshoot of Ayn Randian epistemology. You know, the one that suggests man is an end unto himself, that his happiness is his moral goal (the rest of us be damned) and that his reason is reality (no matter the evidence to the contrary). Yes, that Ayn Rand. Her notion of man’s undying and incontrovertible heroism paired the inviolate rightness of his reason pervades modern medicine; the hubris, the compartmentalization, and the seeming blindness to its own actions are cornerstone. What a wonderful position to hold in the universe, mini man-gods, always certain and always right. Certitude of reason paired with inculcate selfishness all but eliminates the possibility of any reality beyond what it already known and accepted.

Such a perspective would have pretty much squelched most of modern physics, including the search for the Higgs Boson, better known as the God (damn) particle (yes, that was the original moniker). Imagine medical science searching for something so esoteric and so beyond the linear, predictable, and visible equations we have now; something akin to the Higgs Boson (un-massed matter moving within some universal but changeable medium – a medium that dictates force and follows our calculations only if we can identify the mass of the item and the medium within which it operates – which we cannot). Human physiology is no less complex, but nevertheless, in our current Randian state of self-serving hubris, the complexity of human health is all but unimaginable. We have supplanted medical science with some warped construct of sciencism, bolstered by the safety of Randian hubris. And while morally endowed certainty feeds our egos, it does little to forward understanding or relieve suffering.

What if Medical Science Was More like Physics?

What if the pursuits of medical science were more like those of physics where complexity is embraced? Consider the concept explored by those searching for the Higgs Boson –  of unmassed matter. That is mind-blowing.  A notion upon which so many equations and assumptions about reality rest but one that is yet unproven. Contemplate “mass is constructed entirely from the energy of interactions involving naturally massless elementary particles…“. In both its literal and mathematical calculation we have an impossible dilemma of knowing something before it is known; of a ‘decision-point’ among an infinitude of decisions that determines a trajectory. I imagine it as trying to identify a  “universal but changeable medium (the soup of life)” – a medium that dictates force and follows our calculations only if we can identify the precise mass of the item (at the precise time of measurement, remembering of course that measurement itself changes trajectories and that the medium determines the mass) and in the ‘real’ (not the experimentally contrived) medium within which it operates. Sit with that for a moment. The medium within which we exist is infinitely variable and that variability influences the output and vice versa.  That goes well beyond any of current methods of medical experimentation (which, for all intents and purposes, are based upon basic crop science). In fact, infinite variability is the antithesis of medical science, especially the current inviolate rightness of the pharmaceutical model of medicine, where magic pills influence only their intended targets with nary a side effect or unintended reaction.

What would happen if we were to appreciate this level of complexity in modern medical perception?  What would happen if we were to address health and disease, not in nice little physiological compartments, but as one connected process that involves functional and metabolic adaptations at every level?  What if gut health or disease impacted brain health? What if your ovaries were connected to your thyroid? Or your testicles to your brain? (Oh wait, that connection has already been discovered.) What if we recognized the possibility that each system could talk, respond, and adapt to changes in other systems? And that each of those adaptations engendered ever-so-slightly different trajectories?  Is it possible that we are one, completely integrated organism and not simply a collection of compartmentalized organs? Oh, the blasphemy.

It seems too fantastical to be true; a human organism that contains within it a myriad of interleaving parts, with feedback and feed forward systems, adapting and changing functionally to ever-dynamic internal and external signals. At the very least, it contradicts generations of medical specialization, decades of codeable and billable efficiencies, and every human impetus to name, categorize and separate disease. Perhaps more importantly, a notion of a connected universe defies the Randian moral imperative of selfishness.

While it is entertaining to consider that each of us is an island unto ourselves and that our happiness is a moral imperative, it just doesn’t fit the reality of existence without a fair degree of cognitive dissonance. Alas, my friends, despite our efforts to the contrary, the human organism does not exist in bubble and neither do the component parts that make us human exist in isolation. We can no more dissociate our genetic history from our ancestral and current environments than our current health epidemics from the toxic cocktail most of us call food. Everything is connected to everything else. Every action evokes a reaction (and those actions change the very nature of possible and probable and are likewise affected by the constantly changing medium within which they develop). No, matter how much we would like calories to magically disappear or the lifetime of bad health choices to evaporate, the reality of organismal physiology includes a physics of connectivity and a long, long memory.  If medicine is to progress beyond the Randian magical thinking of separateness, it must move towards a more complex physics; one where actions not only have reactions (we don’t seem to consider even the most basic physics with medication reactions), but where our questions match the complexity of the Higgs Boson, and thus, the complexity of organismal interactivity.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Image credit: CERN.

This article was published originally on Hormones Matter on December 9, 2015.

Seduced by Surrogate Markers

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Medical prowess in acute and emergent care is no less than heroic. Where once a heart attack or severed limb might spell the end of life, now it may be no more than a minor setback. Advances in medical technology and innovation have led to robotic surgeries, replacement joints and cardiac pacemakers becoming, not the stuff of science fiction, but commonplace. Imaging technologies allow us to see what was previously unseen and advances in laboratory testing, allow the measurement of more and more compounds. We have software to calculate patterns from enormous data sets; software to predict disease; even software that can render a diagnosis on par or better than most physicians and quickly link pharmaceutical or other medical treatments to the designated disease. By all intents and purposes, we have become masters of modern medicine. This was no small feat, considering a little over 150 years ago, the simple notion of washing one’s hands between patients was considered heretical, as was the idea that essentially invisible microorganisms might be responsible for illness. Modern medicine has come a long way, indeed.

Perhaps bolstered by these advances, we lost track of the most basic components of health. We are living longer, sure, at least until recently, but whether we are living healthier remains open to debate, due in no small measure to how we define health. For the last several decades, medicine has relied increasingly on what are called surrogate markers, things like blood pressure, body mass index (BMI), cholesterol, blood glucose, etc., to define health. The thinking is that these markers represent some aspect of health, and thus, if they fall within a normal range, then one can be considered healthy. Whether one has to achieve those results using a myriad of medications, all of which have side effects, is unimportant. The critical point is that for health, we must meet those surrogate markers. We must weigh a certain amount and blood pressure, cholesterol, glucose, liver enzymes and the like, must fall within designated parameters. If they do not, then something is amiss.

On the surface, these markers appear to be legitimate indicators of health or disease. Certainly, at the tail ends of any curve, at the lowest of lows and the highest highs, evidence of an underlying disease process is clearer with surrogate markers. Where we run into problems is not at the extremes, but in the ever dwindling middle and at the cutoffs between what is considered normal or healthy and what is considered pathological. Here, nothing is as black and white as it appears. Innumerable variables come into play, some having nothing to do with medicine or evidence, and frequently, everything to do with garnering drug approval. That is, drug makers define and test their drugs against the surrogate markers of disease that their drugs were designed manipulate; not against the health of the patient or a reduction in morbidity or mortality, but against the marker.

This is problematic for any number of reasons, not the least of which is the power that this affords organizations with indisputable economic interests. As the arbiters of health guidelines spuriously tied to the use of their products, these companies effectively foreclose any and all rational thought about their products beyond the obvious: does the drug alter the surrogate marker in the manner suggested? If so, it can be considered effective, and to the extent that the other effects of the drug can be obfuscated successfully, it can be considered safe too.

To that end, between 2010 and 2012, the FDA says it approved 45 percent of new drugs on the basis of a surrogate endpoint. Surrogate measures have become the norm in several disease processes. One analysis showed that 67% percent of cancer drug approvals over a five-year period were based on surrogates. This is despite that fact that only 12% of these drugs improved patient survival. Similarly, from 2003 to 2012 the FDA used surrogates for seven out of nine drugs approved for chronic obstructive pulmonary disease, all 26 approved drugs for diabetes, and all nine drugs approved for glaucoma; in only a few cases did surrogate measures predict actual benefits for patients. Inasmuch as physicians rely on prescribing guidelines established by these trials and to the extent that they are adopted by the various medical societies and insurer and even electronic health records companies, surrogate markers quickly become the established tenets of health; so much so, that few question their legitimacy, at least for the first several years, and often never.

Consider just how many tenets of modern medicine are based upon overly simplistic representational markers of disease that do little to identify or correct the root cause of illness and are only cursorily tied the disease process in question, but because there are medications available to manipulate that marker, its parameters define health versus disease and curtail any further discussion. For treatment of type 2 diabetes, as an example, a condition caused largely by diet and lifestyle choices and no small degree of high calorie malnutrition, there are approximately 158 drugs currently on the market to manipulate blood sugar levels to give the approximation of health. Each of these medications comes with its own host of side effects, capable of inducing diseases processes anew for which additional medications will be added. None of these drugs address the root cause of the disease; none improves the health of the patient, but they manage its surrogate markers and often do so quite well.

The converse is also true. When a patient presents with symptoms that are undetectable by current diagnostic parameters using the acceptable surrogate markers, they can be considered healthy even when symptoms suggest otherwise. In these cases, so strong is the assumption that modern medicine has identified and perfected its diagnostic tools and its markers, that when these tools fail to identify illness, the default diagnosis is the familiar ‘all in the head syndrome’; a diagnosis afforded an ever-increasing percentage of individuals with chronic or complicated illnesses for which medicine has no response.

While it is true that surrogate markers can provide a window into a disease process and offer us glimmers of what might be happening, they rarely tell us what caused the disease process, why it progressed in the manner it did, or most importantly, how to heal from it. All they tell us is that something may or may not be awry, depending upon the validity of the marker, and point to the medications that will manipulate that marker. When those medications place the marker into the designated acceptable range, but do nothing to improve the health of the patient, and indeed, often worsen it, all that can be offered are additional medications. It becomes an interminable cycle of pain and suffering with limited returns for either the patient or the physician.

Despite these limitations or perhaps because of them, surrogate markers have come to dominate modern medicine, and in so doing, have precluded more rational thought about health and disease. A disease process is either identifiable by accepted markers and remediable with current therapeutic options or it simply does not exist and the patient is crazy. It is a zero sum proposition; one that has done much to harm the field of medicine and its practitioners despite the obvious gains in economic fortune and sovereign authority for both.

I would argue that reliance on these markers, not only forestalls independent thinking, but also, fundamentally robs us of our humanity. Their use detaches us from the realities of illness; first from the language, then from imagination, and finally, from any sense of humility regarding our own intellectual shortcomings. For once those markers are mastered, we too become masters, and heady with our own sense of accomplishment, become unwavering in our certainty. This is a dangerous position. Here, the incontrovertible rightness of our reason hijacks our humanity and we no longer see or even sense the suffering that stands before us.

When the boundaries of what can be known about an illness are predefined by rules and descriptors several steps removed from the actual illness, the ability to see the illness for what it is becomes impossible. The ability to think through its mechanisms and conceptualize a path towards resolution is constrained to manipulation of the accepted markers. The language of the labs defines what can be known. Perhaps it is unconscious at first, at least for the practitioner and especially for the patient, but over time, it becomes easier to bathe in the simplicity of the predefined, than question the limitations of understanding. That is the seduction of surrogates. They give us an illusion of competence, control, and success without any of the pesky attributes of reality attached. In so doing, they rob us of agency, humility, and humanity.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Musings of a Heretic Patient: Floxed and Fed Up

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After mulling it over for quite some time, I wanted to comment on something we all encounter much too frequently in our floxed lives. That is, specifically, the negative experiences we are often forced to endure with our doctors. As patients, harmed by a widely over prescribed drug, we are often dismissed whenever we propose a connection between fluoroquinolones and the adverse side effects we experience as their patients.

I cannot even begin to quantify the level of frustration and anger I feel whenever I’ve been confronted with this in my doctors visits. It’s demeaning and demoralizing to be treated as if I am a complete moron for broaching the subject whenever they come up empty on their diagnosis.

At first I chalked it up to ego because after all, THEY are the “experts” and I am just one of the great uneducated with the audacity to question their expertise and search for answers beyond their own. I know what it feels like to be sneeringly, denigrated for my research. To be called a GOOGLE doctor for simply not accepting their non-diagnosis as a diagnosis.

Oh, the times I felt like screaming and pulling my hair out in my doctor’s office. The times I became so frustrated I wanted to overturn the tables and rip those stupid charts from the walls are just too innumerable to count on my flox journey.

Laying the blame on ego alone was the simplistic answer but something always niggled at me every time I left the office, depressed and defeated.

Why was I always making excuses for what was so obviously a rude and demeaning attitude towards my quest for answers? Why were all my doctors so hostile to my input and so dismissive of my efforts at educating myself? What lay beneath this dismissal of my pain and the destruction of my body that even they could not deny?

Today it happened again and it sparked me into writing this post.

The Heresy of Questioning a Doctor

I have come to learn that a few of the common tactics used by doctors can be identified. Many of them are being used to work against us when confronting a doctor’s assessment of our specific issues.

The first one is utilizing our lack of a formal medical education to minimize our efforts. It’s the most obvious use of the power dynamic they conjure to silence us. Questioning a doctor is an anarchistic act. It challenges the authority of the empirical medical model, the one we’ve been programmed from childhood to believe has all the answers. The one domain that is so sacrosanct in our society that questioning it is bordering on the heretical and places you squarely outside the acceptable behavior circle.

I have come to accept that I am now a heretic and so is anyone who steps outside the medical status quo in their search for answers. Like any heretic, I need to be prepared for the onslaught of disapproval and derision I might receive for questioning the medical gods. I need to remember to arm myself psychically and mentally for every visit. The fact that I must do this saddens me. It illustrates just how meaningless and hollow the Hippocratic Oath has become to our modern medicine men.

“Nor shall any man’s entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so.”

Plausible Deniability in Medicine

Another tactic used by physicians to dismiss patient concerns is plausible deniability. Physicians now rely on plausible deniability to explain away their non actions or worse. It is the deliberate and destructive act they use against the very people they have sworn to heal. It’s also known as covering their asses. Knowing this and accepting that this is the norm rather than the exception has been a bitter pill for me to swallow but imperative to retaining my sanity.

And Then There is Gaslighting

Another thing I’ve come to recognize as a tactic is what I call medical gaslighting. Gaslighting is a very effective but abusive form of diversion. In this case, a physician utilizes an established (though questionable) psychological diagnosis as a convenient way of absolving their non actions in your case. It also serves to stopgap any further digging into causal links and diverts attention away from the physicians own culpability. How many times have I been told that my symptoms are all in my head? Too many times to count. And since my symptoms don’t fit any known disease model, I must be suffering from a psychological malady.

This has now become a part of the DSM-5 lexicon of psychiatric diagnosis and poses further harm to people like myself and anyone whose symptoms cannot be easily pinpointed to any one specific disease. If anyone, who like myself has been previously diagnosed with a mental illness (depression, PTSD) these diagnoses further serve to de-legitimize the patient’s experience.

We need to be aware that even when we have the hard evidence of medical research to back up our claims, we will be challenged and possibly labeled. If we refuse to accept this knee jerk assessment or the drugs they will inevitably prescribe to treat our “real” issues we might find ourselves tagged with the non-compliant stamp.

I write this as a warning to everyone who finds themselves on this page. You might hit some very daunting, brick walls along this journey but know that you are not alone. One day we will be vindicated, this crime will be exposed, and Big Pharma and all colluding physicians and corrupt governmental agencies will be brought low.

For those who have been blessed with that one special physician who listens and learns, I am grateful to see that ethics still exist. It’s heartening to know that there are doctors out there who can put ego and material gain aside and remain open to their patient’s body awareness and desire for healing. Sadly, those doctors risk becoming medical heretics too, banned and derided by the more conventional experts, the same experts that employ the tactics listed above.

In the end, I know we will win and a big part of that victory comes from the massive amount of support and experience we find on our support pages. Thank you to all my fellow floxies. You are the vanguards of this battle and close to my heart.

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This post was published originally on Hormones Matter on October, 2015.

If We Are Unaware of Human Suffering, Does It Exist?

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Of Forests and Fallen Trees

If a tree falls in the forest and no one is there to hear it, does it make a sound? The age old philosophical riddle posited by George Berkeley and debated by philosophy students for generations has profound ethical connotations for medicine and life. At the root of this question is whether awareness predicates existence. If we are unaware of someone’s suffering, does suffering exist? Missing from the question, however, is to what degree our cognitive and emotional faculties influence our ability to perceive. Aside from outright sensory deprivation, does choice have a role in what can or cannot be perceived?

In the case of modern medicine, if the suffering is invisible to current diagnostic tests and intractable to medical therapeutics, it is not real. Indeed, whether cognitively or reflexively, every time a physician dismisses a patient’s complaint or prescribes an anti-depressant for pain, he denies the existence and veracity of their suffering. He denies the tree in the forest, because he does not see or hear it himself in the context necessary to recognize it – e.g. by currently available diagnostic technologies and taxonomies. Here, medical technology, and the physicians who wield the technology, assume an infallibility that precludes the existence of realities beyond their sight lines, beyond their control.

In many ways, it is as if we have lost the ability to recognize suffering by our common humanity, and instead, have adopted, perhaps unknowingly, a perverted medical ‘awareness predicates existence’ philosophy of care.

That’s a little harsh, right? Well, yes and no. How else does one explain why so many physicians can stand face to face with pure, unadulterated agony and dismiss it without so much as an attempt to uncover the cause and alleviate the pain? Callousness? Perhaps, but I don’t think so. Most who go into medicine do so with honorable intentions.

Certainly, there is some degree of cognitive dissonance and quite possibly, ignorance at play; but I think there is more to this issue than simply holding contradictory views and choosing the more palatable or the lack of understanding that ignorance would require. I think for many the suffering simply does not exist; not cognitively, not intuitively, not at all. It has been trained out them, and out of all of us, quite possibly, carefully and continuously by those who seek to profit from product sales or a particular political ideology. Whatever the cause though, in medicine, if the particular flavor of suffering is not identifiable by standard testing and does not fit into the big book of diagnoses, it is assumed to be feigned and, for all intents and purposes, feigned suffering does not exist. In these instances, suffering becomes the fallen tree in the forest with no sense apparatus to perceive its sound or recognize its reality.

I ask again: if we are unaware of human suffering, does it exist? Of course it does, just not within the boundaries of modern medical science.

Of Choice and Hubris

Perhaps a more salient question, can we ever be truly unaware of suffering unless we choose to be? Medical training paradigms aside, choice may be at the crux of this philosophical riddle. In everyday life, we choose to believe that our world exists continuously and beyond our recognition, whether we are actively perceiving it or not. It would be quite difficult to construct an alternate reality. Imagine the hubris needed to rest the existence of anything on one’s own perception of that object – a continuous perception, no less. And yet, in medicine, we do this all the time. We say with certainty that this or that disease exists or does not exist; that this or that patient is truly ill and suffering while others are not and are feigning their pain. We trust, wholeheartedly, the infallibility of the lenses through which we recognize suffering, even when this means ignoring our own sense perceptions of the human being in front of us. Those are choices, perhaps not entirely active and conscious ones, but choices, nevertheless.

In this regard, our behavior is akin to believing the world begins and ends according to our perception of it. That’s a pretty weighty task – being central to all existence; one I am certain no rational individual would admit to. Except that, this is what we do daily in medicine when we ignore the suffering of patients who have difficult, if not impossible, to diagnose and treat conditions. Rather than admit our fallibility, admit that trees, do indeed, fall in the forest absent our observance, we become the arbiters of reality. In doing so, we ignore the existence of their suffering, and more importantly, deny our common humanity.

I cannot help but wondering if it would not be easier to admit simply that trees do fall in the forest when we are not around; that existence is not predicated on our awareness, and that we don’t, in fact, know everything there is to know about medicine and medical science. It seems to have worked out okay for the rest of science. Oh, and if we can bring our common humanity back into the equation, who knows, we might even discover that we can relieve the suffering that we have been so keen to deny.

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This article was published originally on Hormones Matter on September 30, 2015. 

Informed Consent is the Law: Stop, Talk and Show Should be the Standard

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A lot of us think of “informed consent” as just a form the doctor’s office has us sign. The forms are usually full of really broad, overreaching phrases like “all reasonable medical alternatives were fully and completely explained to me, and I understand that this surgery/ procedure has the following risks . . . .etc. etc.”  And too often, patients are given the forms and expected to sign them without really having any idea what they are signing and what the forms mean.

This sort of “dotting the  I’s and crossing the T’s” approach does little to form a complete sentence, and it does little for the patient or the medical profession. So before you ever sign an informed consent, you should have had a thorough, two-way dialogue with your doctor.  And you should push for a STOP, TALK, and SHOW approach to understanding your condition, your diagnosis, your options, and the risks associated with each and every option—including the option to get a second opinion or forego any medical treatment at all.

Most people don’t know that they actually have specific legal rights that entitle them to have a thorough and informed discussion prior to any non-emergency medical procedure.  Just from an ethical standpoint, doctors should be eager to have that discussion too since that discussion really is the backbone of a meaningful doctor-patient relationship.  But regardless of whether the doctor is eager to have the discussion or is eager to march forward with the procedure, most states have a statute specifically requiring health-care professionals to obtain informed consent, and most states set forth standards that the medical profession should meet in order to show that the patient was informed about the procedure, its risks, and the alternatives to the procedure when he/she consented.  Some states look at these talks from the viewpoint of the doctor: Would other doctors in the same position say the doctor gave adequate information to inform the patient? Other states take a more patient-centric view: Did the doctor tell the patient the things a prudent patient would want to know?

Regardless of where you live and regardless of the standard that particular state sets, I suggest you adopt a “STOP, TALK, and SHOW” requirement yourself before you consent to any medical procedure.  And if you are like me, you’ll want to be heavy on the SHOW part of the discussion.

STOP – As soon as the doctor suggests a plan of treatment, stop the doctor right there, take out your notepad, and get ready to jot down everything the doctor says so that during the next section, the TALK section, you can make sure you talk about everything the doctor just breezed through.  (And understand, I don’t say “breezed through” to indicate a lack of concern or rigor on the part of the doctor. This is his/her area, and it’s not uncommon for people with highly specialized sets of knowledge to sail through a topic that we ordinary people don’t fully understand).

TALK – Once the doctor has finished with his “plan of treatment” discussion, it’s your turn. You have to look at this conversation for what it is: your best opportunity to make the best decision for your health. So talk to the doctor until you understand the following things:

  1. What is the condition the doc thinks is creating your symptoms/complaints?
    1. This one requires that the doc explain what condition/injury/or disease process is, how it works, and why it is the most likely cause for your symptoms and complaints.
    2. This one also requires the doc to tell you how he ruled out other possible causes of your symptoms/complaints.
    3. If the condition is one that was diagnosed by x-ray or MRI, it might be a good opportunity for the doctor to SHOW you what the condition is.
  2. What are ALL of the available treatments for this condition, and what are their concordant risks?
    1. For most conditions there are multiple accepted ways of treating the condition.  You’re entitled to (and the doc is required to give you) an explanation of these alternative treatments.
    2. You are also entitled to know the risks of the alternative treatments.  The doc may have ruled out an alternative treatment because it is less effective, but if it has lower risk, you might want to try that treatment first.
    3. When the alternative treatments are surgical in nature, the doctor can often draw out the procedure so they can SHOW you what is being proposed.  Despite their infamous handwriting, most doctors can draw out a simple surgical process so that you can see what you’re getting into.
  3. Which treatment does the doc recommend and why?
    1. You should have gotten this information along with the alternatives, but since this is the proposed treatment, you are likely going to hear more about its strengths than its weaknesses.  This is a good time to fully understand how the procedure works.  Many times a surgeon will draw out his proposed approach—ask for the drawing.
    2. This part of the conversation should be clear enough that you can intelligently compare the alternatives.  If you feel like you’re in a car dealership making choices before the “boss in the back” leaves, you aren’t having the proper interaction.
  4. What are the risks of the proposed treatment?
    1. I separate this part out because the informed consent forms generally lay these risks out in black and white and they might be vastly different from the conversational risks you were told about.
    2. I ask the doctors to go ahead and SHOW me the informed consent form at this stage so that I can compare the written risks with the risks we’ve discussed.
  5. What are the risks of the alternative treatments?
  6. What are the risks of foregoing any treatment at all?

If this seems like a lot, it is. But remember, you are entitled by law to be fully informed before you have a medical procedure.  Some doctors and hospitals are so focused on meeting quotas and “staying on schedule” that they will try to satisfy that right by giving you a piece of paper and expecting you to just go along with their expert decision about how to manage your health.  The STOP, TALK, and SHOW approach will help you understand the procedure, but it will also help you gauge which doctors see the doctor-patient relationship as a profoundly important part of health care.  I submit that the doctors who take the time to explain the procedure well will also take the time to perform it well.

STOP, TALK, and SHOW, I’d love to hear how it works for you.

 

We Cannot Manage What We Do Not Measure

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Pay attention to the whimper or be forced to cry uncle. Those are your choices. Those were the choices that faced the nation ten and twenty years ago as naysayers to the economic policies certain to bankrupt our country became evident, but they were ignored or lambasted as fringe. The collective wisdom forged forward with derivatives, with the merging of investment and saving banks, against the whimpers of many, only to cry uncle in 2008 as the catastrophe loomed.

As the ‘other 99%’ seek to realign our political and economic situations, women must lead the changes in the health industry. We must pay attention to the whimpers, to the evidence that something is off, and more importantly, we must take heed before uncle is cried. How do we do that within such a flawed system of industrialized, profit-based medicine? Education, measurement, transparency and responsibility.

Education. The number one factor contributing to health is education. The more educated women (and men) are the better health they experience. Why? Better decision-making. Although there are clear associations between income and health, the association between education and health is stronger.

Education allows one to navigate the morass of medical marketing, cut to the truth, and identify the untruth in advertising. Education permits women the confidence to seek alternate directions in health and not simply take what is prescribed to them as gospel. Quite simply, education permits responsibility in health choices. It doesn’t necessarily lead to taking responsibility or making the right choices; we’ve all seen really smart, highly educated people do really stupid things. Rather, education creates the environment where those choices can be made.
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