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Being the Patient
The importance of patient empowerment
Len Saputo, MD
Introduction
Surely doctors must know what is best for their patients. Right? Don't be so sure! Yet most doctors take the position that because they are trained for a decade or more they have a tremendous advantage over their lesser trained patients. After all, that is why patients go to doctors!
However, what if doctors' training is lacking or they haven't kept up with the latest medical research? Aren't there medical advances every day that change what was correct yesterday but is off the mark today?
And are patients supposed to simply "relax and leave the driving to us," just like the Greyhound Bus Lines advertise? Is there a place for us to add information by doing our own research or to "double check" that our doctor hasn't missed something that could be important? After all, we now know that there are nearly one million deaths every year in the US directly related to the medical profession!
Isn't the healing journey supposed to be a partnership between doctor and patient? What can we do when our doctor tells us to let them do their work and leave them alone?
Well, I've got a story for you! Sit back and start reading…
Finding the best surgeon and letting him "do his thing"
After 9 years of progressively worsening pain in my right hip, despite all the treatments I tried, I'd had enough and knew it was time to turn to the knife. Playing tennis was no longer possible or safe because I could not even walk without a constant gnawing pain that not only hurt but also left me unstable and vulnerable to falling, was getting out of shape, and was gaining weight. I was finally ready to accept the risks of having a major surgical procedure.
On October 12, 2010, after carefully studying the possible options for treatment, I underwent Birmingham hip resurfacing surgery. My surgeon had an excellent reputation and had more experience in performing this difficult surgical procedure than anyone in Northern California. I trusted him to "do what was necessary." Even though I am an MD myself, I expected he knew far more than I did about replacing hips, especially the more challenging hip resurfacing procedure, and that it would be best to leave him alone to "do his thing."
After surgery my surgeon told me he was very pleased with his work and that I would soon be doing most of my usual activities. I was delighted!
Things don't always go as planned
The spinal anesthesia I received during my surgery was another story. Apparently, when my anesthesiologist injected anesthetic into my lumbar spine, instead of it going downward to my legs where it was supposed to go, some also went upward and anesthetized the sympathetic nerves in my thoracic spine. This sympathetic blockade caused my blood pressure to drop to 60 systolic and slowed my heart rate to 60. I was in low output heart failure and none of my doctors realized it!
It wasn't until my wife and I did a Google search on our smart phone at my hospital bedside that we figured out what was happening. Had I followed the standard protocol for activity after surgery and attempted to walk around the nursing station, a "code blue" would likely have been called. With a blood pressure and heart rate this low, my heart simply could not pump enough blood to my brain to maintain consciousness. Only God knows what could have happened had I gone through a cardiac resuscitation!
From my bedside I instructed my nurse to give me two liters of IV fluids as fast as possible to bring up my blood pressure, and my wife, Vicki, who was an ICU nurse, told her to lower the head of my bed to maximize blood flow to my head. We were quite a team! Because this was an emergency and no MDs were present, she followed our orders. Nothing changed! I had to remain flat on my back to keep my blood pressure from dropping to a level where I'd likely lose consciousness. The orthopedics floor was not the place to be when a code was imminent. When my doctors arrived, they agreed to transfer me by ambulance to CCU, where I could be monitored, evaluated, and treated by a cardiologist.
Taking responsibility for mistakes
When my anesthesiologist made rounds the day after surgery, I told him what happened. His response was that I must have had a pre-existing heart problem and that he was certain that the anesthesia he administered was not the problem. It was not too surprising that he was in denial; who wants to think they were the cause of a serious medical problem, especially when it involved a medical colleague? However, both my cardiologist and neurologist agreed that what had happened was a sympathetic blockade induced by the spinal anesthetic. To the credit of the anesthesiologist, he eventually admitted that my problem was likely related to the anesthetic he administered!
The next several days were the worst of my life. I decided against taking pain medication even though I was in constant incredible pain; it was safer to endure pain rather than risk lowering my blood pressure further with a drug. Hip resurfacing is a surgery that is more invasive than a regular total hip replacement and is associated with more pain and a longer recovery. Ice became my best friend.
The most amazing relief from my hip pain, peripheral neuropathy, and low blood pressure that were the result of my spinal anesthetic was from the treatment of one of my partners who is an expert in breathwork! She spent several hours guiding how I should breath and offering techniques from applied kinesiology. I could feel the warm sensations beginning to flow into the nerves in my legs and the paresthesias (sensation of tingling, burning, pricking, and numbness) abating. More importantly, my blood pressure rose to near normal levels. She had reversed much of the sympathetic blockade that my anesthesia had caused by regulating the way I was breathing and tapping me in various places while gazing in different directions. Experience is a very powerful teacher!
It is too bad that the doctors, respiratory therapists, and nurses at my hospital did not witness the miraculous change that had occurred using CAM technologies that are regarded in the mainstream as "woo woo!" All this, of course, was done behind closed doors in my hospital room.
Immediately after she worked on me I was able to get out of bed, stand, and walk for the first time after surgery and maintain stable vital signs.
There was another problem that wasn't serious, but was very uncomfortable. The draw sheet part of my bedding contained a chemical that caused a chickenpox like rash that was almost unbearably itchy (we later found that it is no longer used because so many people had the same problem). This was aggravated by profuse sweating that kept me constantly drenched and even more itchy. For several days and nights I hardly slept. I will never forget the sound of the second hand of the clock on the wall of my room relentlessly going tick, tick, tick for several days and nights.
At least I had a new hip and it appeared that I would survive the frightening complications of anesthesia.
Surgery was not as successful as I thought
Over the next 9 months I never fully recovered. I could walk but could not run because of pain and weakness, and I could feel my hip "clunking" when I was in certain positions. It had become obvious that the alignment of my hip was not as perfect as my surgeon thought. Playing tennis was barely possible, but I suffered through it thinking that I just needed to get stronger and get in to better shape. However, by early September of 2011 the pain became so severe that I could barely walk even with a cane.
I made an appointment to see my surgeon. He ordered an x-ray of my hip, an aspiration the fluid in my hip joint to check for infection, a white blood cell scan to screen for infection anywhere in my body, and blood work to assess my overall health as well as check for levels of cobalt and chromium.
At the time, only a few doctors knew about or measured cobalt and chromium levels, so it was a tribute to my surgeon's knowledge. There were only scattered reports in the orthopedic journals that metal on metal hip replacements, which are made of titanium and coated with cobalt and chromium to make them stronger, could lead to a condition called "metallosis."
My laboratory work showed signs of massive severe inflammation, more than I'd seen in any patient in 35 years of ICU practice. It also showed a cobalt level that was ten times above the normal range. I was a lot sicker than my doctor realized!
Although my surgeon knew about metallosis, what he didn’t know was how common it actually is and its potential seriousness. He didn't believe my cobalt level was high enough to justify a diagnosis of metallosis. Most of the medical literature on metallosis did not describe the massive inflammation I had, and most of the reported cases of metallosis were associated with cobalt levels that were far higher than mine. He had a point.
Nonetheless I was sick and was losing ground rapidly. I lost my appetite and about 10 pounds, began having drenching night sweats, and was getting progressively more weak. My internist and I were afraid I had something much more serious than metallosis. The most likely possibilities we considered included a severe infection in my hip, some type of metastatic cancer, or vasculitis.
Choosing the right treatment
Because reconstructive hip surgery could be done more conveniently at my local hospital, my surgeon and I agreed that this was a reasonable plan. However, my local surgeons (I consulted with two of them) were convinced the problem was an infected hip and advised me to have a temporary antibiotic-impregnated artificial hip surgically implanted and then take 8-12 weeks of daily IV antibiotics that were potentially very toxic. This would then be followed by removal of the temporary hip replacement and implanting of another total hip. The infectious disease doctor they referred me to agreed.
I contacted a world renowned expert in metallosis for another opinion. After a couple of lengthy discussions, he agreed with my local surgeon that I had an infection. He was not aware of anyone with a diagnosis of metallosis being anywhere near as sick as I'd become, having such massive inflammation, or a cobalt level that "wasn't that high."
I made peace with God… If this was my time, I was prepared to accept his will. However, I knew how much my wife, family and friends would miss me, and I had more to contribute to my patients and to the health care reform movement to which I remain deeply committed. I was losing control of my health and my life, and things looked grim, but I could accept whatever would happen.
Doctors are not always right, up to date, or honest
Normally I would have gone along with the advice of my learned experts and trusted they knew best. They usually do! However, keep in mind that I had 40 years of experience in taking care of thousands of patients in the hospital and intensive care, and I could not agree with their reasoning or diagnosis. I knew that my scenario was certainly not typical of infection! There was no direct evidence for infection in the fluid aspirated from my hip, from two blood cultures, from a white blood cell count, from a special radioactive scan looking for infection anywhere in my body, or even from a PET/CT scan. And, thank God, there was also no evidence for cancer or vasculitis. So, what was going on that could explain what was happening?
The only conclusion I could come to is that despite the unusual presentation for what we knew about metallosis, it was nonetheless the explanation that made the most sense. Yet no one except my internist agreed with me, and my surgeons didn't want to hear anything more about the "taboo" subject of metallosis. They refused to pay attention to the new cutting edge literature published in their mainstream journals that was making a strong case for a much underestimated epidemic of metallosis!
My new surgeons warned me that while they had heard something about metallosis, it was not yet accepted in orthopedic circles, and they didn't believe it was a legitimate diagnosis. They tried to convince me that they had extensive experience with people in my situation and that I should "stop acting like a VIP." They wanted me to be like the rest of their patients who did not question their professional opinion and simply followed their advice because they were the experts.
They threatened that if I did not follow their advice and had a total hip replacement in the presence of the infection they were so confident I had, it would spread to the new hip replacement. Then, they went on, I'd need to have the new second total hip replacement removed because the infection would almost certainly have spread into the femur where the rod of the new hip would have been implanted. Not only would I be very sick, but it would be necessary to "filet" the femur and leave the wound open to the air to allow the infection clear over several months.
There was more! They went on to say that I'd be confined to bed and need to be on powerful antibiotics to clear the infection. And what if I had a MRSA (methicillin resistant staph aureus) or some other antibiotic resistant infection? These common hospital acquired infections are often fatal! Furthermore, they warned, if all this happened and I managed to survive, odds were that I'd never walk again normally. I had a lot to think about!
Standing my ground
I fired my surgeons.
Not many patients would have had the courage to do this. But then few would be a doctor with 40 years of experience in critical care medicine and would have the same savvy to research and understand metallosis as I did.
Nonetheless I had gotten myself into a real jam. I no longer had a surgeon, I needed to have my Birmingham hip removed as soon as possible because it was poisoning me, and I was deteriorating rapidly!
My internist and I agreed that I should return to my original surgeon to see if he'd remove the hip resurfacing device and put in the new total hip. However, because he had retired from doing surgery (he had turned 70 years old), he referred me to one of his younger colleagues. They both reassessed my situation and agreed that I did not have an infection. They recommended removing the hip resurfacing device and put in a total hip replacement as soon as possible. They also suspected that I had microfractures of the head of the femur that would explain my severe pain.
Hallelujah!
I still remember my new surgeon coming to the bedside after surgery and very excitedly reporting to me and my wife, Vicki, what he'd found. He said he'd never seen such massive fibrosis around a hip replacement and wondered if I had some kind of genetic defect that predisposed to severe keloid formation. I told him that I'd had several previous surgeries and that there was never a problem with keloid formation.
I then asked him if he'd found any sign of infection. He said, "No! There was no sign of infection either visually at surgery or microscopically from pathology." What a relief that was! "So, then," I went on, "I guess you think I have asceptic (non-infected) fibrosis." He paused and replied, "Yes, I suppose so." "Well then, I must have metallosis. Asceptic fibrosis is a synonym for metallosis!" He refused to accept this conclusion and still hasn't to this day, but he has not been able to come up with any other explanation for what was wrong with me.
The only explanation that makes sense for why this doctor would take this position, is that he was either truly ignorant about metallosis and resistant to learning about it, or he was pretending to be ignorant in effort to protect the doctor who did my original surgery. It was becoming clear that the first hip resurfacing procedure was probably not properly aligned, which is fairly common with this procedure, and the reason I had done my homework to find the surgeon with the best track record in Northern California. Improper alignment has to be the reason why my hip operation failed after only 10 months. I can accept that surgeons have bad days, but I have a hard time when they try to cover up the truth when things go wrong. Despite the fact that I've continued to email my original surgeon with my follow up laboratory tests, he has never responded.
The surgeon who removed my Birmingham hip resurfacing device said he intended to send it to the manufacturer for analysis for a possible mechanical defect or for abnormal wear that could be attributed to improper placement of the device. I was surprised to learn that no photos were taken at surgery of the tissues or of the device. Initially, my surgeon reported that the surgical specimen had been lost but after a careful search it was found. Then for reasons that are inexplicable, it was still not sent to the manufacturer. Six months after surgery the device still resided in the pathology department of the hospital where I had surgery! Finally, the device with the head of the femur still in it, was somehow not stored in formalin as is normal protocol.
This, unfortunately, means that the pathologic evidence that could verify whether or not microfractures were really present, if there was another pathological finding, or how much fibrosis was present around the device may no longer be possible. My surgeon still maintains that he cannot understand how all these mistakes could happen. It is interesting that the pathology report makes no mention of the massive fibrosis the surgeon reported after surgery. The surgeon's explanation was that "the pathologist did a poor job in his report!"
It doesn't take Sherlock Holmes to figure out that at the very least, no one made much of an effort to figure out what really happened. How difficult is it to send a surgical specimen to the manufacturer or to get a second pathology report?
Recovering
Over the course of the next two months, my cobalt level returned to normal, as did all of my inflammatory markers. I began feeling like my old self. However, with the exception of my internist, none of my surgeons attempted to explain what happened or why I had gotten better so quickly after surgery. None were willing to write a case summary to publish this unusual case in a mainstream orthopedic journal, or present it at hospital grand rounds so other doctors could learn from what had happened.
I reconnected with the renowned expert in metallosis I had communicated with earlier, and after reviewing what was found at surgery and the dramatic improvement in my laboratory tests after my Birmingham hip resurfacing device was removed, he agreed that the only explanation was that this was an unusually severe case of metallosis, perhaps the worst he'd come across. He requested I continue to share my clinical course and laboratory test results with him. Perhaps, he'll present my case at orthopedic grand rounds at his hospital or write up the case for a medical journal.
None of my surgeons apologized for their lack of willingness to listen to me or for their lack of courage to go beyond the conventional boundaries of their profession's thinking by considering the diagnosis of metallosis. I suspect they were afraid that if they deviated from the usual standard of practice, turned out to be wrong, and something serious happened to me because they missed a serious infection, that they would be punished by their peers, their hospital case review board, and eventually even by the California State Medical Board. They may also have feared a possible medical malpractice suit.
No one congratulated me for having the courage to follow my convictions and direct my own health care treatment at a time when I was quite sick and making critical decisions when my life was on the line that were not only unpopular but also heroic.
It doesn't take much imagination to see what could have happened had I been like nearly all patients who go to their doctors and blindly follow their advice. How successful do you think most patients would be in getting the results I did? How often do you think this happens in clinical practice?
This was a very frightening and painful experience, but also invaluable because it opened my eyes even further about how important it is to listen carefully to my patients and care enough about them to do what is right regardless of the potential consequences might be from my peers, my medical board, or possible law suits. After all, the best medical care puts patients above all else.
Pressure to conform
It is not easy to be a good doctor. Doctors are highly trusted and expected to be infallible. When a mistake is made the price can be very high for both the patient and doctor. Yet doctors are human, and to err is human. No one knows everything. Especially doctors, because there is so much to know to practice the best cutting edge medicine!
The practice of medicine is far too complicated and is impossible to master. Once medical training has been completed and a doctor is board certified in their particular field, the real work is just beginning. It gets more complex every day because hundreds of new journal articles are newly published every day in each specialty of medical practice. It is impossible to keep up with all this new information. Of course, this is a large part of the reason why my doctors were not up to speed in the subject of metallosis. Yet when the subject is published in the NY Times and is reported in the local evening television news, you'd think that even if they weren't reading their orthopedic journals that maybe they would have made a special effort to at least do a Google search on the topic!
The fact is, doctors make an incredible number of mistakes every year that come at a cost of hundreds of thousands of major disabilities and lives, and hundreds of billions of dollars. This is the accepted standard of practice!
Making matters worse, medical boards have a bizarre code of ethics. They tend to enforce the standards of practice as though doctors should know everything. They are especially unforgiving if a doctor is practicing beyond the boundaries of conventional practice. When doctors risk advancing their scope of practice by bringing in a new way of practicing medicine and something goes wrong, they are nearly automatically considered guilty of malpractice. This means that those doctors who are pioneers and have the courage to step forward had better have a successful outcome or they will likely be taking the risk of suffering potential disciplinary action from their medical board and potential malpractice litigation.
It is completely understandable that my doctors were afraid to go out on a limb to treat me for metallosis when this was not yet the accepted standard of practice. At the same time, every person deserves a doctor who is willing to consider every style of treatment that could be of value for his or her patients and put their patients above themselves.
A return to healing
Choosing a treatment is a collaborative process, a team effort, that involves patients, their families, doctors and other health care practitioners, spiritual counselors, and sometimes financial advisors. Treatment must consider each of these factors as well as how it might impact the community we live in. It must also be tailored to each individual's unique and special needs and must address the whole person - body, mind, emotion, and spirit.
It is the responsibility of doctors, with their good intentions and amazing fund of knowledge, to educate their often ill-informed patients about their health issues, have the patience to listen and consider treatment options that may be outside of their discipline, and partner in choosing the best treatment that is based on the person's desires, what is wise, and what is possible. There should be no conflicts of interest influencing doctors to recommend a particular test or treatment program. Health care should be a service, not a business, if care is the highest priority.
It should be not only allowed but also encouraged that patients research their own illness, if they are so inclined, and be given time to share what they have learned with their doctor(s). The Internet has made research feasible for both doctors and patients. Treatment plans should have the possibility of being as diverse as each unique individual patient.
Doctors must go beyond "dealing with the gallbladder in room 326 or heart attack in the CCU" using cookbook strategies that to a large extent "one size fits all." HMO medicine and electronic medical records will make it very risky for doctors to create a treatment plan that is out of conventional mainstream teaching. They will leave a digital trail that may well be scrutinized to make sure that they don't stray from conventional "wisdom." Yet it is imperative that doctors remember at all times they are dealing with human beings who have illnesses, not illnesses that just happen to be in human beings.
It was a fierce uphill battle fighting to have say in my own treatment plan even though I'm a highly trained doctor with extensive experience. How would someone who wasn't a doctor have fared in the same situation?
There is a clear need to humanize the way medicine is practiced. This cannot be achieved without doctors who are willing to listen and care about their patients as the highest priority. Practicing good medicine requires both good science and careful attention to the emotional and spiritual needs of every single patient. Yes, this will take more time, but we must not lose sight of the purpose of health care.
If we want "a return to healing" as the modus operandi of medicine, we must first humanize medical treatment so that the relationship between patients and doctors becomes both sacred and of primary importance. We must remember that what we think and how we feel have an immense and powerful influence on our biochemistry and physiology. They can make the difference of whether a treatment plan works or fails, and perhaps even whether we live or die. As human beings we deserve nothing less than to have all of our needs met - physically, mentally, emotionally, and spiritually.
