Child in Canada With Neuroblastoma Medically Blacklisted for Choosing Medical Cannabis

Growing Charlott's web marijuana

For my second post for #Blogmas 2017 I came across a story that every mother and father should read! A mother, Mandy Drew in Alberta Canada was told her daughter, Cheyenne was hopelessly ill and that she should “take her home and create memories.” Doctors threw up their hands and gave up on the little girl after she continued to worsen in traditional chemotherapy. Tumors were wrapped around vital parts inside her body, making the situation that much more complicated.

Her mother, faced with no options from her daughters treating professionals considered medical cannabis given the fact that at this point there was really nothing to lose. If she’d done nothing death was a 100% certainty! Although a little skeptical at the outset, Cheyenne’s mother decided to give it a try, but she had no idea that her daughter would be medically blacklisted nor the level of hostility she would receive from the medical establishment. One doctor who during a phone call asked Mandy what she was doing in her alternative treatment literally hung up on her when the mother told her she was treating her with cannabis oil.

Despite the rejection and anger directed at her for this treatment choice, the Alberta mother reported that her daughter began responding with just 1 gram per day. She began to notice her apetite return, her mobility improve, and eventually it was discovered that her tumors were calcifying (a sign of apoptosis, the scheduled death of the cancer cells)! Now at age 4 and having already beaten the odds, Cheyenne functions like any other 4 year old, is symptom-free, and doesn’t even have any awareness of her diagnosis.

Her mother appeared on this radio show which was posted to Youtube on January 24, 2007 to speak about her experience. The host also gives some very interesting information from research suggesting that many illnesses may be caused by a deficiency in the body’s own cannabinoid system. Apparently there is a lab in the US offering a test to see whether your illness(es) are due to this deficiency or dysregulation. Watch the video for yourself to hear this woman and her daughter’s amazing story!

Yes, medical blacklisting happens to children too, even dying children, and it’s a shame that doctors and the corporations they work for are so arrogant that they would turn their back on someone like this when they have nothing better to offer. Corporate healthcare has in effect taken the patient out of the equation, when in fact the patient (or parent when the patient is a minor) should have the last word when it comes to treatment decisions, and more often than not, the patient is correct about what is likely to work.

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Whatever a doctors opinion on cannabis or any other treatment for that matter, he or she should keep an open mind and support the patient’s treatment decision. Most patients who have decided on a particular treatment they want to pursue do so after alot of careful reading, research, and thought. Therefore they should not be treated as crackpots or loose cannons when approaching their doctors.

These patients are already suffering and it only increases their suffering for a doctor to work at cross-purposes with a patient that he has stopped or refused to start treatment on. It is not only heartless, but unethical for a patient’s treating professionals to ostracise a patient for doing what they have to do to save their life or the life of a relative who is in their charge. It may be OK with a doctor to throw in the towel, but it shouldn’t be, especially when there are other things to try which he/she either have not looked into or flatly refuses to consider.

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A doctor or a healthcare system should never be a gate-keeper between a patient and the possibility of improvement, preservation of or quality-of-life. To do so is in clear violation of the Hippocratic Oath. Healthcare professionals must keep in mind at all times that they are in this field to help others. What they do in the course of any given day should not be about their own needs and biases, but should be undertaken for the sole benefit of the patient. Sometimes that means being willing to put your own opinions aside and giving the patient the means to reach further without impedence.

Adventure

The practice of medicine should be a selfless act, not one whose primary motivation is to save face. In this day and age physicians are not expected to know everything, (and get a clue guys, the cat’s out of the bag! Patients are well aware that there is no way that a doctor seeing patients all day long back to back has the time to read up on all the latest research. Many patients now know how to read medical journal articles and have to become experts in their own conditions in order to ensure they get the best treatment available, so it’s high time that was acknowledged.

Corporate- blank business card

 And medical professionals, The crackpot defense no longer holds water anymore. Instead of shutting patients out and shutting them down when they engage you in discussion about a certain treatment, or diagnostic possibility, instead of writing backhanded and snarky comments in a chart, why not treat them like the respected partner that they are and approach this undertaking as a challenge to be solved rather than a threat to your authority.

Closeup of a business man with his hands behind his back and fin

It’s not personal. It’s not about you. It’s about their best health, and their life.

 

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Medical Record Inaccuracies and Doctors’ Personal Agendas

Doctor in the office

Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!

Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated  by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.

Hot idea

Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.

Stubborn as a mule

The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.

Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.

Buffalo in winter cold

When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.

We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.

Taking notes

There are certain principles that exemplify skillful charting on a patient.

1) Charting must be accurate and precise

2) It must be relevant

3) It must be written to benefit the patient

Accuracy and Precision 

This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”

Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.

My diagnosis was obtained by objective tests 13 years ago. 

I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.

There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.

Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.

It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.

My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.

It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.

The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effectThe fact that I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.

Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.

How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.

During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.

His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).

He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).

Field of Medicine

So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.

1) I have dysregulated blood pressure,

2) chronic constipation,

3) near syncopal episodes,

4) Muscle weakness and spasticity, and severe fatigue

5) Etreme thirst and need ice water by the bed at all times

6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time

7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).

8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)

9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.

Solving the puzzle

Relevance

All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.

Grass Roots Political Organizing

It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.

Written To Benefit The Patient

Charting on a patient must be written with the intent to do something useful for the patient.

What do you intend to accomplish?

What is your game plan?  

How are you going to go about helping the patient? 

These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.

Stress and Strain

You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.

Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.

She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.

Do the pieces fit

Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.

Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.

Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.

Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.

Perfect

To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.

I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.

It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.

They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.

In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.

In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once  more facts were elicidated upon further testing.

Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.

Burning Up

Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most  unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.

Androgynous Black Woman

Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.

Running into a wall

Instead of becoming a teachable moment for other physicians watching it this case became a prime example of how not to do conflict resolution when you discover that agents of your company have engaged in unethical charting on a patient.

More Delays on Out-of-town Specialist Appointments

Ain't It The Pits - Photo for WordPress Blog DSC_0023

Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.

Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors). 

The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke. 

I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!

It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.

Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.

Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.

I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.

There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.

Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50  mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.

The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.

I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come  home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!

I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this  non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.

My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.

Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.

With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do. 

After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).

I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It has to! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.

Last week some nice person in one of my chronic illness groups sent me the link to another woman (this one in Colorado who had received a letter very similar to the one I received from the Chief Medical Officer. This patient is a civil rights attorney.

It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.

It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.

There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.

I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.

Change is Coming; Our Bodies, Our Choice!

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Momentum is building within the chronic illness community and as the numbers reach epidemic proportions we are rapidly becoming the majority and becoming a formidable voting block as well.

As patients we are taking our health into our own hands and insisting upon the respect and dignity we deserve in forging our own path to wellness…and on our terms. As we become more and more educated the traditional medical hierarchy is increasingly proving to be outdated and non-applicable given the current state of affairs.

This is our life and our body that we live with 24/7. The doctor who treats or fails to treat can go home and turn his mind to other things, whereas whatever treatment decisions are made will follow us, the patients, when we return home. These decisions and the orders or lack thereof surrounding them often determine our level of relief or suffering. Our doctors, (while well-meaning in the best case scenario) cannot fully ever grasp what we deal with on a day-to-day-basis, so in fairness they need to acknowledge and give reverence to the truth that nobody can know the workings of our selves better than we ourselves.

There are many things no medical textbook can teach you.

In the real world organs in the body don’t always work that way, and to insist on believing they must is to deny the patients’ very humanity. One cannot approach the human body the way a mechanic approaches a car. We are much more complex than that. Human beings are both consistent and inconsistent. That is what makes us human. Unlike machines we feel everything that is done and not done to our bodies and to our minds. This in turn adds to our physiology for better or for worse.

A good and wise doctor understands that he/she must not ever eclipse the patient, but instead be a good facilitator and advocate for that individual and always fulfill a supportive role throughout the course of the patients’ life, not to decree, mandate, or gate-keep, but to pave the way for their patient’s own individualized path to healing to the best of their ability, to remove obstacles and never to create them. The patient, especially the complex chronically ill patient’s life is hard enough. The goal should always be to make it easier.

Ethics demands that the doctor/patient relationship in today’s modern society be one of equals, a partnership toward a common goal, while always remaining mindful that the patient has the final say in the body which the patient alone owns. This philosophy must also extend further than the office of the primary care physician and carry over into all areas where medical professionals exist.

Doctors, healthcare systems, medical schools, conferences, and regulatory decision-making bodies can no longer afford to shut us out, put us off, nor deny us an equal place at the table. We are becoming a force to be reckoned with and a strong source of information  not only of help to ourselves and our fellow patients but also to doctors, residency programs, and continuing education programs. It is often we, the patients who dig up the research papers, find the links, and connect the dots our doctors don’t have the time or interest to seek out.

We, the patients notice shifts and changes in our bodies that provide clues the doctor might otherwise completely miss. Without clinical symptom monitoring and record-keeping a doctor often has no way to know even what tests to run or where to start looking. Listening to the patient is probably the most important part of reaching an accurate diagnosis. This is why it’s so much more difficult to treat animals and small children because they can’t tell you what’s wrong.

This is also why perceiving a patient as an unreliable source is so dangerous. They are capable of telling you what’s wrong but if you don’t believe them on a core level you are dismissing and/or throwing out important information you need in order to assess, diagnose, and treat them.

For true equality to happen first doctors and the institutions that train them must acknowledge the need for change.

It is one thing to be ignorant of new knowledge, but quite another to refuse to allow it in and instead stubbornly hold onto one’s ignorance.

Doctors Gone Wild Are Like Herding Cats

Person holding little cats in arms.

As a patient you should be Chairman of the Board when it comes to your own body, but working with several doctors and keeping them all on the same page with your goals and priorities can be a challenge.

Patients with chronic diseases and disorders are now more proactive and educated about their health and options than ever before.

There is an evolution and a revolution taking place and with it some growing pains as both doctor and patient struggle to adapt to a new paradigm and renegotiate the once traditional roles that have dominated the field of medicine.

Every movement from Civil Rights to Women’s Liberation has over time experienced a shift in the balance of power as the once less powerful party begins to take a more active part in the determination of their lives and their bodies.

It is to be expected that while this transition to empowerment takes place that there will invariably be some backlash from the party that started off with the most power and control and a resistance to relinquishing that which should rightfully belong to the other.

Today’s patient reads more research, and spends more time weighing their options and fine-tuning their plans for optimal health and quality of life than do their primary care physicians.

What was once traditionally viewed as over-obsessive involvement in one’s health is increasingly becoming recognized as a positive attribute not to be pathologized but celebrated and is rapidly gaining acceptance in mainstream medicine.

Naturally doctors may feel threatened given the redistribution of power within the doctor/patient relationship. Where patients used to look to the doctor for their sole source of guidance, many patients are not waiting for this edict and have now begun to take the helm in the diagnostic process as well as in matters of well-care such as diet, exercise, and alternative therapies.

Increasingly patients are publishing books, blogs, and even sometimes papers in medical journals as they become more sophisticated and better informed in areas once exclusively limited to doctors. They have begun to command an equal seat at the table on boards and decision-making bodies of illness specific organizations, and have carved out a niche for themselves as resident experts in online forums, support groups, and on discussion panels at medical conferences. 

At the same time many physicians have become so overloaded with the volume of patients they see on a day to day basis that they have little time to devote toward staying up to date on the latest practices and innovations in a given field and this role has increasingly landed by default on the shoulders of patients themselves.

Insurance companies pay less and demand more paperwork of doctors in the field and what used to be an hour visit is now 40 minutes, or even 20 minutes in order to generate enough revenue.

In this kind of high volume high pressure environment the focus over time often becomes more that of quantity at the expense of quality and as a result doctors may find themselves falling into a rut of repetitive and mundane chores that become tedious and tiresome. There is little incentive for doctors whose main bread and butter comes from performing physicals, tending to minor medical issues such as the flu and sprained ankles to be creative.

If  you are one of the lucky ones to have a DO or one of those rare doctors versed in chronic illness who can manage all the facets of your disease without need for specialists then it can be much simpler, especially when that doctor is working for you to make things go as smoothly as possible and understands just how important and valuable your limited stamina is.

If not, then you may find as your condition worsens that you do need to add in more specialists in order to get all aspects of your disease properly handled. This can work, but a patient must be prepared to be very assertive, be a good “manager”, and there is always the risk that some of these physicians can get away from you, going off in their own directions and those directions may run counter to what works for you.

The worst case scenario is when cross-talk between doctors without the patient included in the loop circumvents what the patient wants for him/herself and some of the doctors decide they “know what’s best” for the patient in place of the patient’s judgment. This sort of “mutiny on the bounty” can wreak havoc on the relationship between doctor(s) and patient, and it must be remembered that the patient should always remain central if this model is to work effectively. The patient should always be “head of the treatment team” and the doctors in a consultancy role; not the other way around.

While for many doctors in 2016 this is still a stretch for them to accept, it is the new norm and increasingly accepted in mainstream modern society as patients take a more proactive approach to their own healthcare. As in other relationships, sometimes 3 (or 4, 5, and 6) can be a crowd and dynamics can become sticky and awkward as each seeks to find his/her niche in the care of a patient they have in-common. For the patient who is ill this scenario can become like herding cats, a constant challenge to keep everyone on the same page (some of which may not readily accept that they in fact are there to work for and on behalf of the patient).

Traditionally doctors have been authority figures issuing their professional opinions and their directives with the expectation that their patients follow their lead, and so for some physicians adjusting to this new paradigm of deferring to the patient is a bitter pill to swallow and they have difficulty going along with it. This is why I put off bringing specialists into my care as long as I could. I knew that my GP was used to handling all my care for a number of years and he didn’t seem to like referring.

In retrospect I think the problems in our relationship all started when I began to see other specialists because there were certain things that were beyond his expertise. I began seeing him less often because it was necessary to work more intensively with my pulmonologist due to the fact that I had some worsening respiratory problems that became quite serious and I was in crisis.

This pulmonologist is especially patient-centered (despite what I’d heard about the specialty as a general rule), and he has helped me tremendously, working with me to design a plan of action that fits me as an individual. This is the type of physician someone with complex medical conditions needs on their team.

As time went on I filled in my GP as to what was happening and as it became clear I would need yet another referral to a neurologist and the pulmonologist wasn’t sure who to recommend, I asked my GP if he knew somebody who was good and his response was oddly irritable out of proportion with the request.

I thought he would be glad that I wasn’t keeping him out of the loop and that he was not forgotten in this process, that I was asking for his input, but instead he seemed hurt or resentful that I’d spent so much time working with the pulmonologist.

It was pretty clear that he felt displaced and responded that if this doctor felt I should see a neurologist then I should get a referral from him. He then went on to say that there are two connected with the sleep lab for which he works, and mentioned their names.

I wrote back on the Patient Portal to say that I also value his input and the other doctor really didn’t know any neurologists he could personally recommend and that he had limited contact and knowledge of these two who worked in the sleep lab. Also, I added, I did not want him to feel he’d been forgotten, that I would still need him regardless of the fact that I now require other specialists to get through this difficult time in my disease-process and I let him know how much I appreciated the referral because it may have saved my life.

He said he thought I misunderstood, but to this day I believe he was in denial or not consciously aware that he was in fact jealous of the relationship I had developed with the other physician. Maybe he was unaware or underestimated of how much his ego was invested in his being my go-to person and when he got into territories that were outside his expertise he felt inadequate to help me, so his frustration was displaced onto me, the patient. I hate that this has caused friction or conflict, but on my part I feel I have done what I’ve had to do to take care of myself and I meant no offense and was not trying to snub him in the process.

As much as I feel he has profoundly betrayed my trust that he would lash out in such a way; that he’d take such a low blow as to sabotage my treatment, I do not forget the way things used to be and just stop caring on a dime. Maybe that is what hurts me the most. If he wasn’t valued and I felt no attachment to him I could just say “so much for that jerk” and move on, but feelings are not that neatly dispensed with when one finds out the person you once knew has ceased to exist in the here and now.

I am still somewhat in disbelief that he could be so cruel and vengeful when his smiling face says otherwise. I’m struggling with these conflicting signals; the duality of a pleasant and effusive facial expression upon greeting that hides beneath it something that is anything but. I must acknowledge that in the time-span I sat in his office the other day his smile quickly became a sneer, and that I did see other visual cues that indicated his true demeanor such as eye-rolling (never a good sign that you’re being regarded with any kind of esteem), but nevertheless I am pretty gobsmacked by his change. While I know it happened over a period of months as my disease progressed, his disdain is thinly veiled now and it is unnerving, to say the least. And further disturbing; (according to his supervisor) he is the top-rated GP in Emory’s system, so I am left not knowing what to say or what to do because again, if he has chosen to focus all his frustration on me and continues to treat his other patients well, then I am truly alone. As much as I didn’t want to have to speak with his supervisor it was the only way to get him to do what he was supposed to do and to get these orders unstuck that were sitting there for weeks and some for months. I had been trying and trying to communicate with him to no avail, and at some point something had to be done.

I still need to follow up with her on the topic of his refusal to treat my dysautonomia and his overall treating me as irrelevant. If my pulmonologist can and will treat the dysautonomia (or Dr. V will do it) this part of the problem may be something that can be worked-around, but the issue of irrelevancy has to change for there to be any chance for us to work together in any capacity.

I cannot work with a doctor who treats me as though I’m a hypochondriac because I am fully involved in my own diagnostic investigation and I have to be able to openly discuss differentials with my doctors without being judged in this way. If he fails to see the value I bring to my own healthcare and fails to understand that my body is my domain then all truly is lost in the relationship. Carl Rogers, originator of Humanistic Psychology coined the phrase and the concept of Unconditional Positive Regard (which I believe is the cornerstone of the Patient’s Rights movement).

That philosophy says that human beings should be supported in their right for self-determination and that creating a safe, nurturing, and non-judgmental place for them to grow will engender healing. At the core the practitioner must believe that the patient is doing the best they can. If one does not believe this then he/she will eventually not be able to hide it in their interactions.

So based on this theory I must assume that my GP thinks the worst of me, and it makes me wonder what he held back, what he wasn’t saying in our last conversation that day in the office. What could he believe that would make no explanation I gave him sufficient, and invalidate all my symptom reports?

For that answer I need to know exactly what Dr. V charted or said to him directly (whichever it was), as it was based on her remarks that he diverged from me and decided not to treat my dysautonomia. This is where the herding of cats comes into play. I have placed a call to her office stating that I need Dr. V or her nurse to call me. When I receive the call I plan to ask exactly what was said and whether it was written or on the phone, and I’ll let them know the effect it has had and ask that anything damaging of a non-neurological nature be removed from the electronic record.

When such damaging events take place the patient must act swiftly and address them with each individual who has contributed to the damage to have them correct their part in it. Only then can positive constructive working relationships be restored and the focus go back to the task at hand. It is vitally important that every member of the “team” commit themselves to the unified patient-centered purpose identified by that patient, and not try to force one’s own agenda.

Members must not gang up with other physicians in an attempt to unseat the patient’s autonomy if this model is to succeed and a positive outcome achieved. The primary allegiance must always be to the patient because without trust the working relationship is illusory at best.