Adding Insult To Injury; Painful OT

Several months ago my finger got injured and then infected during the height of he COVID-19 lockdown. It was the worst possible time to have a serious injury. X-rays showed that it developed septic arthritis in the PIP joint but they could not tell how serious the soft tissue damage was. My GP, hoping it would heal on its own had gone to doing telemedicine only tried to look at it as best as she could on video chat, prescribing several rounds of antibiotics.  She was afraid to send me to the ER even though that’s the usual procedure, because of my high risk of catching the Corona virus. When it remained swollen and was becoming stiff she then recommended I see a hand specialist. I was sent to the wrong place that as it turned out had no doctor on site, so I scheduled with a different clinic that sounded as though they knew what they were doing.

The first doctor blithely looked over my finger, then forced it closed, and said he didn’t think the tendon was fully severed but might be partially, and said when asked what he thought was causing it not to be able to bend “I’m not God, honey, I won’t know unless I open it up and it’s been 4 weeks so why not go to physical therapy for a month and then re-evaluate.” There was a huge lump on the top of my finger that looked like hypertrophy but it wasn’t, and that seemed to be what the obstruction was, at least in part. I followed his advice and set up twice a week appointments for hand therapy. I didn’t have alot of pain at that point, but I can’t say I saw much improvement. It just simply would not close no matter what I did. After about 2 weeks there was still alot of swelling. I noticed that when it was wrapped it went down but a little while after I took the wrapping off it puffed right back up again. The therapist who was working with me (I’ll call her E) noticed it too. Both of us had the growing feeling that something in there was still broken. I didn’t have alot of confidence in the first doctor, so I asked to be switched to another one who had really good reviews. He turned out to be great; had a good bedside manner, and also seemed technically good. He ordered an MRI and said there was alot of inflammation throughout the finger but he couldn’t really see clearly enough to see everything inside, so since physical therapy really wasn’t showing an improvement after several weeks he scheduled surgery.

First try ended up being a no-go. Being at an outpatient surgery center next to the office, the anesthesiologist got cold feet 5 minutes before I was to go into the OR because of my Dysautonomia. He said that they really didn’t have the equipment in case something went wrong, so said I’d have to have it done at the hospital.

Things here in Georgia were just starting to open back up, so all hospitals were requiring people scheduled for surgery to have a COVID test within 72 hours of their procedure. I had to have a friend from a distance away take me since medical transportation told me they don’t do drive-throughs.

The day of the test I thought, no problem. Easy-peasey. Just a swab in the nose and it’s all done. I had had swabs of my throat before and they weren’t too bad, but boy was I wrong! When we drove up through the testing station a man who was a doctor connected with Gwinnet Hospital dressed in a full Hazmat suit approached the car. “Which one of you is being tested? he asked. I told him it was me. He came around to the passenger’s side and told me to look up at the ceiling. He pulled out a long swab about a foot long, and stuck it up my nose and back towards the back of my head. It had to have gone in about 6 inches from what I could see. It felt like I had no skin in that area and almost as if he hit a raw nerve ending. It hurt like HELL! After counting to 5 he pulled it out. I thought he was done, but then pulled out another swab and took a sample from the other nostril. I felt as though I might faint. Things got swimmy and I got somewhat disoriented for a few minutes.

The day of surgery my aid and I arrived at the hospital in a van spewing fumes. It was one of the subcontractors arranged by the transportation broker. The hospital was pretty fast and got me into the back without much of a wait. There two nurses greeted me, asked me a bunch of medical history questions and one of them went to start an IV. I didn’t realize until she couldn’t find a vein that she was in training. At that point I can always tell because I never have problems with getting an IV in the first time if the person knows what they’re doing. She probably tried 2 times in some of the worst areas, then the senior nurse told her to use some lidocaine. That worked, saving my poor wrist and hand on the left side from further agony.

The surgeon was running late, but came in carrying what looked like mini trunks which I can only assume he used to carry his tools. I spoke with him about the procedure details and then the anesthesiologist. Because of my Autonomic Dysfunction they wanted to avoid putting me under general anesthesia but I did not want just a local because I didn’t think I could handle being conscious while my finger was being cut upon, so they did sedation. I was a little worried I’d wake up in the middle since that had happened when I had a colonoscopy at Emory, but luckily I stayed out the whole time and was not aware of anything until the operation was done and I was all stitched up. I awoke in the recovery room and they were transferring me back to the room where I had been prepped.

The surgeon came in and explained to me that he had found a tendon that was 50% severed, so in addition to removing the big lump of tissue on the top of my finger and scar tissue underneath, he had to sew up the tendon which had been engulfed in scar tissue and had been pulling it open further and further over time. Chances are the earlier physical therapy and exercises at home had just been fraying the edges more and more, so it was a good thing I had surgery when I did, as it might have eventually snapped completely, as tendons cannot heal on their own. Though my body did its damnedest to try all it did was result in a tangled mess of tissue that served only as an impedance.

It is 6 weeks now since my surgery and the splint came off last week. Overall OT has been going well; no problems… until last week. I had a rather jarring experience and have been researching what to do and came across an OT blog called My OT Spot about how OTs should handle when a patient refuses. In the blog post the writer gave examples of reasons why patients refuse a treatment. Having just come home from my appointment it struck me that she left out one very important reason…when the pain induced is intolerable. I’m posting this in my blog first since I think it’s fitting to my topic of horrors in the US healthcare system, but then posted it in her comment section.

Here it is below;

You left out one very important reason patients refuse; excruciating, intolerable pain. I go to a hand clinic for OT after having surgery to repair a 50% severed tendon in my index finger and to clean out scar tissue that was binding it up from being able to close. This clinic has several locations but only one has infrared, so I go to that one on Tuesdays, and the other on Thursdays. The therapist I see on Thursdays is very gentle and respectful, but the one at the other office is overly rough and impervious to when she’s going too far with something. Everybody knows it, too and half-joking; half serious talk about it while they’re in there! Last week she went to do the scar massage that is usually done with the hands, but instead pulled out this hard plastic tool and started digging really hard into the base of my finger and the knuckle on the palm. She was digging in HARD. This was not “uncomfortable”, “slightly painful”, “tender” , “sore” or anything like that. It was absolutely unbearable; I’m talking about 20 on the pain scale, no exaggeration! My whole body was trembling and retracting involuntarily and I started to lose consciousness. Only then did she stop. I left very shaken up, and thought, this can’t be legit. Either she must be badly trained or some sort of sadist. I left there saying to myself, never again.

Then she happened to show up at my other appointment as a floater to help out my other one and she must have charted something because the gentler one said to her she didn’t want me doing anything too aggressive. I thought that resolved it, but today she tried it again. I very clearly said “No, don’t use that. I can’t take it. Use your hands.” She kept arguing and insisting and actually said to me “It’s GOING to HAPPEN.” I have read the ethics standards for OTs and it clearly says they are not to force things on a patient. And I have read that they are not to coerce in addition. I felt like she really might fight me if I tried to leave the room. It’s hard to know what to say to something like that. I just explained to her rationally that it did not seem to be worth all that pain, as my finger got rock hard afterwards and felt bruised for days. She didn’t apologize for hurting me nor take any responsibility for trying another option, but instead acted like it had to be done and there was no other way. She was taking that drill sergeant stance you used as an example in your article. None of that was making me feel any more convinced nor at ease. I felt assaulted and cornered. She seemed to see it as a battle of wills when in fact it was not. I have not refused anything else they’ve asked me to do there but don’t want to injure myself further by subjecting myself to something that really has almost no studies proving it’s safe and effective and for which I was able to find no set standards of care. She was not able to tell me which protocol she was using (upon my later reading it appears to be either Graston or Gua Sha) nor offer any alternative ways to address scar tissue instead, and she could not really tell me how deep the internal part of the scar went that necessitated such drastic aggressive treatment. Her answer was that you can feel it when the thing goes over it. I asked her to show me with her fingers how deep it goes. When she did at less than 1/4 inch it seemed not so urgent after all for her to be in such a rush to go to these aggressive lengths. She tried to scare me further by telling me “it’s soft now but it will get hard, it can stick to and restrict your joint and you won’t be able to move it.” I am already having ultrasound and infrared and doing all sorts of exercises. It just struck me as very creepy just how hell bent she was to do this one thing, as if she was intent on doing it BECAUSE it was unbearably painful, not merely in spite of it. Now she is going to call my main one, “E” that I see on Thursday to try to coerce her to be more aggressive. Up until now I’ve had mostly good experiences with this clinic but I may have to find another one if she continues in this direction, as this really doesn’t sit well with me. Her only suggestion was to “just breathe through it.” You can’t breathe through that level of pain. My first thought is maybe she could apply at GITMO. I’m sure those people would talk after that, LOL.

The Problem With Medical Licensing Boards; The Sacred Cow Factor

A Georgia primary care doctor was still allowed to practice even after admitting to committing  3 sexual assaults upon patients in the process of his work. Dr. Harry McDonald was interviewed by journalist, Leighton Rowell of Channel 2 Action News … Continue reading

Why Doctors Don’t Come Clean To Their Patients

A True Apology - Make It Right

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gold Caduceus

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

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

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

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

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

A genuine apology involves 3 important parts;

“I’m sorry”,

“It’s my fault. I was wrong”, and

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

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

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

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

Solution

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

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

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

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

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

Giant Health Product Giveaway Nov. 23rd – Dec. 3rd! Lots of Prizes!

Chronic Illness Bloggers is hosting a big giveaway jam packed with all sorts of fun and healthy prizes! If you’re anything like me, you may want and need a lot of items for your health that you just can’t afford. … Continue reading