The Benefits of Being an Empowered Patient
Cultivation of medical self-empowerment will allow you to get optimal healthcare. The path to becoming an empowered patient can also serve as a type of mindfulness practice, leading to taking charge of your life. People gravitate to unproven alternative products and treatments in an effort to put control of their lives in their own hands. Unfortunately, following treatment paths that are devoid of real science ultimately prove disempowering. Every action suggested on this page and throughout the entire website will increase your sense of being in control of your life, which in turn, increases overall wellbeing. When you increase wellbeing, you reduce emotional distress, which then reduces physiological stress. Reducing physiological stress is always good for your health. If most people lived with the level of self-responsibility and self-management recommended on this site, there would be no healthcare crisis.
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Inpatient Versus Outpatient
This page of my website will teach you how to achieve mastery of your day-to-day healthcare as an outpatient. For mastery of your self-care and healthcare when you are a patient in the hospital, see the next topic—When You Need Hospitalization. What follows that topic will all pertain to being an empowered outpatient.
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When You Need Hospitalization
Empowered patients never go into the hospital alone. When my wife needed major surgery a few years ago, I stayed in her room the whole time. I slept in the foldout chair next to her bed. I set up a mini camera (with sound) on the windowsill in her room. When I went out for meals I could see and hear anything going on in her room on my iPhone while sitting in the restaurant. For a thorough education on how to get really good, safe care during your hospital stay, I recommend you visit the following sites: http://empoweredpatientcoalition.org/ as well as http://engagedpatients.org/
You can download a free patient guide. Also, buy the book The Empowered Patient by Dr. Julia Hallisy. Dr. Hallisy is one of the most knowledgeable experts in the world on how to become an empowered patient in the hospital. Other trusted sources of information on staying safe in the hospital are the National Patient Safety Foundation: http://www.npsf.org/?page=patientsandfamilies and http://patientsafetyamerica.com
You may also want to go to The Joint Commission: http://www.jointcommission.org/about_us/about_the_joint_commission_main.aspx
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How To Become An Empowered Patient In Daily Life
Most important is knowing where to go for information. Information should not come from sources influenced by the pharmaceutical industry, medical instrument industry, or alternative medicine industry. You can trust the information coming from government agencies. Throughout this page I will be providing you with the urls of the most trusted sources for useful information. The first source I’d like to recommend is the U.S. Department of Health and Human Services’ division known as the Agency for Healthcare Research and Quality (AHRQ), which provides information to help you optimize your healthcare: http://www.ahrq.gov
The other source of important information is that acquired by learning how to pay attention to subtle, early signs, such as a rash, and early symptoms, such as a pain or other sensation for which you can’t account. These early signs and symptoms provide information that can be very useful in achieving an early diagnosis. Most of the time, a disease is more easily treated and sometimes even cured when treated at an early stage.
Another empowered patient tool I use is to track all of my Out of Range lab values. By tracking these lab values, you will be able to spot any trending, which will provide your doctors with diagnostically useful information, which can greatly facilitate an early diagnosis.
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Self-Empowerment And Being In Charge Of Your Life
Aside from getting better and safer medical care, empowered patients have healthier self-esteem and are less depressed—even if they are physically dependent on others for management of their activities of daily living. It is important to understand that being an empowered patient does not mean you must shoulder every task involved in taking charge of your healthcare all by yourself. In some situations, medical self-empowerment means taking charge of your life by hiring home healthcare workers, visiting nurses, and a professional advocate.
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Getting The Best Treatment
If you have a rare disease or an unusual medical condition, it is best to find out about studies being done on your diagnosis; this could determine where you get treated. In addition to getting into a clinical trial, it is also recommended that you find a specialist who is well known for treating your condition. Occasionally, this may even mean traveling to another part of the country.
If you need a surgical procedure that is done in high volume at the medical center in your area, even if it is high-risk, there is often no need to travel to another part of the country. Something the most empowered patients do is to search and find the names of the top two or three specialists in the country for that procedure. They then call those doctor’s offices and request that the doctor provide the name of the top person in your geographic region. You could also call the office of the chief of medicine at one of the top academic medical centers and make the same request. When you call, tell them what you were diagnosed with and the name of the treatment or procedure that was recommended. By providing specific information, you are more likely to get a good recommendation than if you simply ask: Who is the best expert in such and such a specialty?
However, if you need a procedure that is not done in high volume by anyone in your geographic area, then, you may want to actually travel and get the procedure done by the doctor who performs the highest volume for that particular procedure. A less commonly performed procedure may be low to moderate risk when performed by the doctor who performs that particular surgery on a regular basis, yet that same procedure is likely to be high risk when performed by someone who only does that procedure very occasionally. In The Patient’s Playbook by Leslie D. Michelson MD, a book I highly recommend, the author describes how, despite living in close proximity to two world-class medical centers (UCLA and Cedar Sinai), he travelled to New York Presbyterian Columbia, in order to get a consult from the top parathyroid expert. That renowned specialist recommended the best surgeon at that renowned medical center. Dr. Michelson then asked for the name of the best surgeon in the country and was told that the top expert for that specific surgery was at Yale, which is where he decided to get the surgery. The surgery he needed was extremely intricate and although the surgeon at Columbia would have been excellent, Dr. Michelson explains that in a surgery where the margin for error is extremely small, a great surgeon is not good enough; in that situation, you want the surgeon who is most known for that particular procedure throughout the entire country.
Although your PCP and specialist can help you make good decisions, empowered patients want to do their own review of the most evidence-based data on the diagnosis and treatment options for their particular condition. One outstanding source for that information is the Cochrane Library and Database. http://www.cochrane.org/about-us
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Volume Equals Safety and Quality
In interviewing potential surgeons or any physician for an invasive procedure, ask how many he or she does per week. Older doctors may have done an impressive number over the course of a career, but that does not mean they are up to date and still on top of their game. Therefore, the question about volume should generate information that reveals his or her weekly volume for the procedure you need. In his book Understanding Patient Safety, Dr. Robert Wachter of UCSF Medical Center, demonstrates that volume is equated with better results. It’s important to go to a high-volume hospital and a surgeon who has a very high volume of the specific procedure you need.
When I needed rotator cuff surgery several years ago, I first went to a highly recommended surgeon who works out of our local community hospital. I asked him how many of that procedure he did per week. Then I visited a surgeon at one of the tertiary care medical centers in San Francisco, forty minutes away. It turned out that the San Francisco shoulder surgeon did more than twice as many rotator cuff repairs per week as the local guy, which made the decision easy. High volume usually predicts a better outcome.
Although the importance of choosing a high volume surgeon at a high volume hospital seems obvious, especially for a complex procedure, you may want to consider getting all your specialty care at a high volume medical center. For example, many primary care doctors and even small community hospital based dermatologists have missed subtle skin cancers that were later picked up by a dermatopathologist specializing in skin cancer at a high volume medical center. By going to a high volume specialist for all your healthcare needs, you will get the best care. I don’t like going to my ophthalmologist because the waiting area never has fewer than twenty five patients waiting to be seen by one of the doctors. But I will continue to go there because she did her training at the top eye hospitals in the world and sees a very high volume of patients, many of whom have found their way to her for a second opinion.
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In Confessions of a Surgeon, Dr. Paul Ruggieri describes all the mistakes he made in his first year of medical residency. For example, he admits in his book that while working in the emergency department as a resident he: “accidently punctured a guy’s femoral artery while trying to draw some blood.” This is a good illustration of why you should never let any doctor, nurse, or tech perform any procedure on you with which that clinician has little or no experience. If any phlebotomist or clinician appears inexperienced, always ask how many they have performed. Most patients are afraid to request a different doctor, but you have the right to ask for someone more experienced.
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Become An Expert In Every Aspect Of Your Care
One example is the followingBecause one of my many medical conditions is a mild bleeding disorder, resulting in easy bruisability, I always tell phlebotomists what size needle to use. If numerous tests are being done, I ask for a 20-guage needle; if we’re only getting a CBC, metabolic panel, and lipids, I ask for a 22 or 23-guage needle. Another example: When I was first diagnosed with a heart rhythm abnormality, we always prophylaxed with Amoxicillin before all dental procedures. Then, they changed the guidelines and said it was not necessary. However, because I also have co-morbid conditions and because my providers don’t communicate with each other, on my own I emailed my immunologist to get his opinion. When you have a complicated medical history as I do and your doctors don’t all discuss your case, it is up to you to find answers and to advocate for yourself.
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Seek Medical Treatment Early
Empowered patients seek medical care when they most need it—early. Whenever you have a new troubling sign or symptom or you think something needs attention, if you request help early, it will be easier to treat the problem. Most disease states are most effectively treated early, yet most patients tend not to go rushing off to the doctor until symptoms become more serious. Ideally, whenever you call your primary care physician’s (PCP) office with a new symptom that may need attention, someone from the office will return your call within a few hours and get you in that day or the next, to see a physician, nurse practitioner, or physician assistant. If your doctor’s office doesn’t do that, you could go to an urgent care center, sometimes referred to as an acute care clinic. Obviously, if you think the symptom could possibly be life threatening, you would bypass those two options and immediately call 911.
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You Do Not Always Need A Physician
Many patients see either a nurse practitioner (NP) or a physician assistant (PA) for all their primary care needs. Both are well trained to handle most of what comes up during an office visit. In the future, as the shortage of internists and family physicians grows along with healthcare costs, these two categories of clinicians will increasingly be used for most primary care needs. Not only are NPs and PAs quite well trained, they tend to spend more time with patients than do physicians.
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The Emergency Department
Never go to the emergency department (ED) unless you are having a life-threatening emergency. If your symptoms need immediate evaluation or treatment, but are not life threatening, go to your PCP or urgent care center. However, in a truly life-threatening emergency, immediately call 911.
Emergency departments are often overcrowded and, despite triage, not everyone always gets timely care. This is especially true if your condition starts to deteriorate while you are waiting to be treated in a particularly busy ED. In that situation, the person who accompanied you to the hospital needs to bring your deteriorating condition to the attention of the triage nurse or if you have already been brought back to the treatment area, bring your condition to the attention of any nurse or doctor. If you don’t receive the necessary care in the ED, especially if you are getting worse, your advocate needs to speak up, but if that does not result in getting treated within a reasonable time frame, then that is a time when empowered patients know how to go up the chain of command. This will rarely be necessary, but you should know that you do have the right to go up the chain of command in those very rare situations.
For example, if you don’t get enough priority even after discussing your concerns with the triage nurse or someone treating you, you or your advocate can talk to the charge nurse, nurse manager, shift supervisor, or the ED’s director. Although it would be highly unlikely, if even that doesn’t work, your advocate can locate and pick up the house phone, dial 0, and ask for the hospital administrator or the hospital administrator on call or have that person paged. Your advocate could say, “The patient has an emergency medical condition that should be evaluated right away.” Although you are not likely to ever need to go up the chain of command, empowered patients feel better just knowing that they have it within their rights to take that action.
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You or your advocate should strive for honest, respectful communication with everyone you come in contact with on that shift. Make note of the names of everyone who treats you. Do not blame individuals; they’re doing the best they can, and when things go wrong, it is usually a systems problem.
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Always Keep Your Important Records With You
If you have a complex medical history or a serious chronic medical condition, keep your most important medical records, including medications and other treatments, in your mobile device so that you can always easily provide them in emergencies and even at scheduled medical appointments. I keep mine on Word documents on my iPhone, but the App Store has numerous apps that allow you to easily organize and store all your medical records in folders on your mobile device. Whatever method you choose, having your records with you on your mobile device can save your life.
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Learn How The Body Works
If you have the energy and the interest, I recommend going to your local community college or university to register for the courses nurses take as prerequisites for admission to nursing school. I especially recommend biology, anatomy, introductory general chemistry, and physiology. If you’ve been out of school for a long time, as I was when I took those courses, you will find the coursework very challenging. However, not only will the intellectual stimulation be healthy for your brain, the education you receive will allow you to better understand your health and will help you better discern your quality of care, every time you seek medical care. Also, you will be able to read and interpret the latest research on your diagnosis in the medical journals. In addition, with that education, you will be much better equipped to be an equal partner with physicians and other clinicians.
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The Importance Of The Team Approach
It is best to get all your care at the medical center where your PCP is well connected. Doing so will make it more likely that your PCP can act as team captain, coordinating good communication between all your specialists and diagnostics departments, and then coordinate your care. I am referring primarily to outpatient care because for inpatient care, hospitalists and the house staff will care for you. Examples of such a system would be Kaiser Permanente or any large academic medical center where all the clinicians and techs work within the same healthcare organization. In that type of environment, every time you go to another department or clinic, even if it is across town, they will be able to instantly call up all your medical records electronically. Not only that, they will more easily be able to call or text any of your other doctors using the medical center’s intranet portal. Unfortunately, this ideal situation is the exception rather than the norm. Personally, despite being a very high level empowered patient, my own teams of various specialists almost never talk to each other. On occasion, I have had to request them to do so. It should not be that way, but in the real world of silos, it is that way all too often.
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The Need For More Biomarkers And Other Early Diagnostic Tests
Unfortunately, we are still living in a time of very few biomarkers for most deadly diseases. For example, pancreatic cancer is one of myriad diseases that are usually diagnosed too late to save the patient. Thousands of diseases are asymptomatic until late-stage; when they are diagnosed early on rare occasions, it is usually as an incidentaloma. Twenty years from now, biomarkers and other inexpensive, easily available tests will allow doctors to diagnose diseases like pancreatic cancers or glioblastomas at a very early and treatable—even curable—stage. We currently have various scanners that can detect early-stage pancreatic tumors or glioblastomas, but they are far too expensive to use for routine annual exams. Biomarkers will be able to accomplish the same feat very inexpensively. In fact, many new mobile apps will soon be available to allow empowered patients to use a tiny drop of blood to test their levels of glucose, lipids, and run other simple tests on their mobile device, and to then send the results to their PCPs or specialists using the medical center’s patient portal. Otoscopes, ophthalmoscopes, and other diagnostic attachments for mobile devices will soon allow all of us to examine ourselves and then send the results to our doctors using the patient portal. One of my many conditions is paroxysmal atrial fibrillation and so I have an EKG monitor on my iPhone, which allows me to see if I’m in normal sinus rhythm. I can interpret the rhythm, but you don’t need to have that skill. With a couple of clicks on your mobile device, you can easily send the rhythm to your cardiologist for interpretation.
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Economics Determines Screening Recommendations
A few years ago, my wife was diagnosed with early-stage colon cancer. Although it was curable at that stage, it did require major surgery and hospitalization. If colonoscopies were recommended every eight years instead of every ten, a certain subset of patients who had no adenomatous or nonadenomatous (as in her case) polyps ten years earlier could be cured by outpatient endoscopic polypectomy rather than major surgery in the hospital. Economics is what determines most screening guidelines for most diseases. As another example, MRI picks up early-stage breast cancer long before mammography. The substantial difference in cost between these two tests is the only reason women get annual mammograms rather than periodic MRIs.
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Get a Second Opinion
Empowered patients are assertive about getting a second opinion whenever they are uncertain about a diagnosis or proposed treatment. There are several factors to consider here. In Your Medical Mind: How to Decide What is Right for You, Harvard physician and author Jerome Groopman, points out that when we seek medical help, for various reasons, at least four types of errors are all too common.
- The doctor fails to ask the right questions that could lead to the correct diagnosis.
- The doctor fails to order the right tests that could lead to the correct diagnosis.
- The doctor fails to diagnose the problem early enough to effectively treat the patient.
- The doctor treats the patient based on evidence that applies to most patients. He or she does not take into account that a particular patient may have a preexisting condition that would contraindicate that particular treatment.
I once knew a nurse who suspected she might have developed congestive heart failure (CHF). She correctly went to a cardiologist with symptoms that happen to be common to influenza as well as CHF. The cardiologist took one quick look at her and told her to go home, telling her she just had the flu. Because that particular cardiologist (who just happened to be the same one I was seeing at the time) was very respected at our local community hospital where she worked as an RN, she ignored her nursing experience and her intuition and followed his advice. The result was catastrophic. She had performed her own differential and correctly diagnosed herself, but she didn’t follow through. Eventually, she suffered so much damage to her heart that she needed a pacer and a defibrillator implanted. Upon hearing what had happened to her, I switched cardiologists.
We need to question everything our healthcare providers tell us and get a second opinion at a different institution when there is doubt, in order to avoid falling victim to that type of situation, which is all too common. If it can happen to an experienced RN, it is even more likely to happen to someone not trained in medicine, nursing, or physiology. Her cardiologist was correct insofar as he did not jump ahead and treat her for CHF just because she suspected she had it; his mistake was in not running various tests that would have confirmed his patient’s suspicion. Like many doctors, he had little respect for a nurse’s diagnostic acumen and believed that patients should simply listen to their all-knowing doctors. But she was also at fault. Her mistake was in not immediately seeking a second opinion.
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Decision Analysis, Algorithms, And Probabilities
In the New York Times bestseller How Doctors Think, Dr. Groopman (mentioned above) describes cases in which emergency medicine physicians failed to correctly diagnose a patient because the patient didn’t fit the diagnostic algorithms. In other words, they tended to choose a diagnosis that was statistically logical but ultimately incorrect. Newer generations of doctors especially tend to think in terms of algorithms and probabilities, and in doing so, miss some of the outliers. Some patients have very atypical presentations that result in a missed diagnosis. Other patients have a symptom that is almost always associated with a different population or a different diagnosis.
For example, when I was about fifty-four, I requested a dual-energy X-ray absorptiometry (DEXA), used to diagnose osteoporosis (OP), to assess my bone mass. The physiatrist I was consulting looked at me and told me with absolute confidence that I didn’t have OP. I managed to get the DEXA anyway, which revealed that not only did I have OP; it was much more advanced than would be found not only in other fifty-four-year-old men, but was more advanced than would even be found in the average ninety-five-year-old woman. It was inconceivable to this doctor that a healthy-looking fifty-four-year-old man could have a disease usually found in elderly women. But I knew enough about physiology to know that the malabsorption syndrome I’d recently been diagnosed with could easily cause OP, which was what prompted me to request the DEXA. Though I had told this doctor about the malabsorption, he still could not see the connection.
Usually, if you are able to present a scientifically valid, evidence-based argument for a specific diagnosis, test, or treatment, physicians will give it serious consideration. However, there is still a subset of physicians who expect patients to show deference to them and these physicians will sometimes ignore the knowledge, wisdom, and training of any patient who is not a fellow physician, even when the patient is an RN or a biochemist.
Clinical trials data are often the most convincing type of information that can give you credibility in conversations with your physicians. If clinical trials data for your disease are lacking or show wide variability in outcomes across a diverse patient population, you must work with your doctors to formulate a plan for getting the most appropriate treatment for your specific situation. Keep in mind that there is actually no such thing as an average patient; no one is an algorithm.
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Empowering Questions To Ask
In The Patient from Hell, scientist, risk management expert, and mantle cell lymphoma survivor Dr. Stephen Schneider explains how you can actually help your doctor make a correct diagnosis by asking the right key questions.
What Else Could It Be?
Dr. Schneider says that if you find yourself in a situation where your doctor is suggesting a diagnosis that, based on what you know, does not seem right, there is one question that often helps remove the blinders: simply ask, “What else could it be?” This question may seem too simple to be significant, but it can make a profound difference in getting correctly diagnosed.
In the case of my osteoporosis diagnosis, because I was somewhat knowledgeable about pathophysiological processes and diagnostics, I was able to ask that question and then build a case for doing particular tests that could reveal a hidden diagnosis. Of course, one would hope this kind of flexible thinking would come from the doctor, but I have outlined the reasons this is so often not the case.
Is There Anything That Doesn’t Fit?
Dr. Groopman’s book mentioned above recommends this follow-up question because it can prompt the physician to pause and think outside the box. Doubt can be a good stimulus to investigate further. This is another seemingly simply and insignificant question that can dramatically increase your chances of getting correctly diagnosed. Obviously, you would only ask this question when your doctor seems unclear about the diagnosis or when you have medical knowledge that leads you to question the initial diagnosis. These questions are critical because the diagnosis is critical.
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If You Are Diagnosed Incorrectly, You Will Receive Treatment For The Wrong Disease.
You may want to join the Society to Improve Diagnosis in Medicine. This organization explores ways to reduce diagnostic errors in medicine. Membership is made up of patients, physicians, healthcare systems, risk managers, educators and researchers. You can get involved with this nonprofit organization in various ways.
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Dr. Schneider (mentioned above) says there is still another question to ask and it is this: Is it possible I have more than one problem? Most of the time, all of a patient’s signs and symptoms can be explained by one unifying diagnosis, consistent with the notion of Ockham’s razor—that nature favors the simplest cause. However, posing this question is another way to help your doctor cast a wider net and look beyond initial impressions. On occasion, some patients will actually have two diagnoses that produce similar signs and symptoms; although it’s not the norm, it does happen. Don’t be afraid to bring up Ockham’s Razor when you have knowledge that could possibly cast some doubt on the initial diagnosis.
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More On Second Opinions
When you ask the above questions and your doctor is stumped, it is time to get a second opinion at a different institution, or from a different type of specialist at the same institution. For example, when gastroenterologists at two large, tertiary medical centers couldn’t explain my intestinal malabsorption, I found that an endocrinologist offered a new, previously unexplored hypothesis. Finally, it was an immunologist who put various pieces together and arrived at the most likely explanation. If your doctor doesn’t suggest it, which would be ideal, you should still pursue the second opinion on your own. When your condition has not yet been sufficiently treated, brainstorm with your PCP to determine what additional type of specialist may be able to shed new light on your condition.
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Beware Of Conflicts Of Interest
Never get a second opinion from a doctor who is connected in any way to the pharmaceutical company making one of the drugs under consideration for your treatment or who is involved in a study of one of those drugs. Now that our shortsighted congress has defunded the National Institutes of Health (NIH) approximately 80 percent of the funding for medical research comes from the pharmaceutical and medical devices industries. The NIH will provide you with a list of the best cutting edge clinical trials. Go to: https://clinicaltrials.gov
In addition, NIH has various institutes with their own special area of interest. For example, if you or a loved one has been diagnosed with any form of cancer, you can trust the National Cancer Institute (NCI) for the most up to date and reliable information: http://www.cancer.gov/about-cancer/treatment/clinical-trials
For help with an uncommon or rare disease, you can trust NIH’s National Center for Advancing Translational Sciences (NCATS): https://ncats.nih.gov/engagement as well as NIH’s National Human Genome Research Institute (NHGRI): https://www.genome.gov For general information on all aspects of cancer, go to the NCI Information Center: http://www.cancer.gov/contact/contact-center
You may also find Oncolink useful: http://www.oncolink.org/treatment/article.cfm?c=3&s=18&id=170
In addition, the top academic medical centers provide information on a vast array of clinical trials; this one is from UCSF, one of the leaders in clinical research: https://www.ucsf.edu/research/clinical-trials-overview
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Know When To Get A Second Opinion
You need to know when you could benefit from a second opinion. In the earlier incident I mentioned in which I asked a physiatrist to order a DEXA, when the results came in the doctor never even called me to notify me that I had this very dangerous condition. When I showed my primary care physician the results, she referred me to an endocrinologist, who correctly started me on a bisphosphonate. However, that endocrinologist also blurted out as she was walking out the door of the exam room that I also had fibromyalgia (which I knew I did not have!) so I never returned to her. In fact, I soon switched PCPs. It was that PCP who had sent me to the endocrinologist who blurted out an incorrect diagnosis. Most patients would not know that it was a bogus diagnosis. As if that wasn’t bad enough, that same PCP next prescribed a medication for me that I knew to be contraindicated due to a comorbid condition, which she should have been aware of, and would have been aware of if she had looked in my chart before prescribing it. Again, most patients would not know that the prescription was contraindicated. In order to help your doctors give you safe, optimal care, you (or your advocate) must be an expert on all your medical conditions and medical treatments.
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Knowledge Can Keep You From Harm
Patients who fail to be knowledgeable about their various medical conditions will eventually be harmed by one of their doctors. The next PCP I went to failed to appreciate the significance of an inflammation on my foot. I knew enough to immediately self-refer to a dermatopathologist, who instantly diagnosed it as cellulitis. Those were just a few of the many, many red flags that eventually motivated me to switch all my care over to the two large, high-volume tertiary referral medical centers in San Francisco. The physicians at centers such as these are able to recognize the more unusual conditions that doctors connected with a small community hospital would never see. Again, high volume can make the difference between life and premature death.
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If You Never Question Your Doctors You Will Often Get Inferior Care
At another time, still another PCP I was seeing told me that some of my lab values were way off. Suspecting a lab error, he correctly reordered the same labs to be immediately redrawn. When I got the results (which I always request), they were still way out of reference range for that lab, but that PCP never even called to tell me. He completely dropped the ball, so I dropped him. After a few additional incidents of falling through the cracks, being incorrectly diagnosed, and having contraindicated medications prescribed for me, I realized that, as patients, our health is truly in our own hands. Patients who never question their doctors often get inferior care. If you fail to learn all you can about your own medical conditions you will be unable to even determine the quality of the care you are receiving.
Anytime you notice a lab value is way out of range or you see trending, where a certain enzyme, leukocyte, or any other value steadily increasing or decreasing each time the test is done, follow through with it. Ask the ordering physician what the possible causes could be. If your doctor does not have a plan, ask what the best plan would be. Go to one of the sites on my Medical References page in the drop down menu of the References button and learn all you can about that particular lab value. Quite often, a different test is able to provide more information. For example, if your AST is trending upward, it would be good to get tested for hepatitis C.
Be curious about your bodily processes. Ask questions. Look things up. Whenever I wonder about something, I go to Google Scholar, PubMed, WebMD, or any number of other sites, depending on the specifics of what I want to learn.
Protocols Are for Average Patients
Protocols are developed in order to standardize the most efficacious evidence-based treatments. However, many patients have unusual circumstances, and the standard procedure may not be the best method for any particular individual. Whenever you suspect that you are in that situation, you must speak up and ask if there’s an alternative way of doing that particular procedure. If you think of an alternative way of doing something, suggest it; just be sure you can provide a good argument to support your reason for suggesting it. Dr. Schneider, mentioned above, did this throughout his entire course of treatment. In his book, he presents convincing evidence that his recovery was largely due to the probing questions he relentlessly posed to his doctors, hence his book title—The Patient from Hell.
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More Isn’t Always Better
Some doctors are known to treat disease quickly and very aggressively while others are more likely to want to do more tests before starting treatment and recommend a watch and wait approach. Both types of approaches have successes and failures, depending on the specifics of the diagnosis and the age and history of the patient. However, if the aggressive treatment being recommended is high risk, it’s important to get a second opinion from an expert at a different medical center. Obviously, there are times, such as when there’s acute traumatic injury, when there really is no time to wait before deciding on a high-risk treatment, but usually there is time to get another opinion. If you are at all in doubt about either approach, get a second opinion.
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Don’t Settle For “Idiopathic”
When doctors use the term idiopathic, it means they’re satisfied that there is simply no known cause and there’s no reason to continue looking for one. Sometimes, even after a second, third, or fourth opinion from experts at the best medical centers, the correct diagnosis remains elusive and the etiology idiopathic. However, don’t accept anything as idiopathic without getting a second and possibly third opinion from an expert at a different institution. Another expert may think of some obscure diagnostic test that reveals new information. I know this from personal experience. For many years, I had several lab values that were way out of reference range and were considered idiopathic. Eventually my immunologist was able to put various pieces of information together, which provided a possible explanation for all the seemingly unrelated diagnoses, some of which were only tangentially related to the immune system. Although his ability to see the big picture didn’t result in any cures, at least the new information may help guide us with future treatments.
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Vigilance is at the heart of being an empowered patient. The time and attention you invest in monitoring all aspects of your healthcare will afford you the best chance of receiving top-quality medical care. If you don’t feel well much of the time and lack the energy required to be vigilant, then I highly recommend having others advocate for you. Family or friends can advocate for you. Professional advocates are also available. The most empowered patients hire a professional advocate when they lack the energy or cognitive clarity to advocate for themselves. I would also recommend using the following organization, which has an enormous list of individuals and nonprofit organizations that advocate for improvements in safety and better healthcare: http://www.advocatedirectory.org
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Walking Through A Minefield
In working with hundreds of medical patients in my mind-body medicine practice, I was continually horrified by countless stories of patients being given the wrong drug or wrong dose, experiencing a botched or wrong diagnostic or surgical procedure, having an adverse reaction to a diagnostic or treatment procedure, and a panoply of things that had gone wrong. Many simple procedures that are done incorrectly go unnoticed. For example, there is still a problem of doctors and nurses reusing a needle or vial that is intended for single use.
The number of patients who had slipped through the cracks especially appalled me. I eventually realized that navigating one’s medical care is like walking through a minefield. The minefield is unavoidable, which is why you must learn to discern the quality of care you are receiving and advocate for yourself. This is why it is essential to have a medically savvy advocate with you at all times whenever you need to be hospitalized.
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Be A Squeaky Wheel
Failure to follow through is another big concern. I, too, have experienced a lack of follow-through by physicians who failed to order necessary procedures and ordered unnecessary ones, prescribed contraindicated drugs, and overlooked or didn’t follow up on dangerous lab values. I learned to pay careful attention to every detail of diagnosis and treatment and to speak up immediately if anything did not seem right—to be the proverbial squeaky wheel. Staying on top of things to this extent requires a lot of time and energy, but it can make an enormous difference in quality of life and can even make the difference between life and death.
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Talk To The Lab
This is something you probably will never have to do. However, having medical self-efficacy means taking the initiative to discuss any ambiguous results with your doctor and, if necessary, asking your doctor to let you talk to someone in the lab. Normally, lab techs only speak directly to doctors, but they will talk to you if the ordering physician approves it. On occasion, important new information becomes available from this conversation that could inform a better treatment protocol, although without large data sets, this information is sometimes too ambiguous to use in changing a treatment protocol.
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In Diagnostic and Treatment Procedures, Less Invasive Is Safer
Talk to your doctors about your options whenever you need an invasive procedure. Ask if you can choose the least invasive procedure available, unless it is clearly inferior to a more invasive one. At one time a gastroenterologist wanted to order a diagnostic ERCP (endoscopic retrograde cholangiopancreatography) for me, but due to the high risk of post-ERCP pancreatitis, I asked and received an MRCP (magnetic resonance cholangiopancreatography). Another time, I had a choice between capsule endoscopy or push enteroscopy; in this case, my gastroenterologist was the one who recommended the less invasive test and ordered the capsule.
If a certain drug holds less promise of controlling a particular symptom than a drug that is more likely to control the symptom but also more likely to cause adverse events, ask your doctor if you can start with the safer one and then switch to the riskier one only if the safer one fails to work.
Also, know what drugs to avoid given your particular history and genetic profile. For example, Fentynl is a great analgesic, but because I live with a primary immunodeficiency condition, I would avoid chronic use of it because it is very immunosuppressive. Don’t blindly trust your doctors to have that information on their minds when they order a drug for you; they are only human and make mistakes. Twenty years from now, one’s genetic profile will serve as a guide in choosing which will be the best medication for the doctor to prescribe for each unique individual, but we are not there yet. Meanwhile, you must learn what drugs are contraindicated for your medical conditions and add that information to your medication notes. I recommend maintaining these in a Word document or an appropriate app on your mobile device, because you want to be able to easily update the information and you want to have it at your fingertips at all times.
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One important way to advocate for yourself is to go to every office appointment fully prepared with a well-thought-out list of questions. I create a list of questions before each medical appointment and maintain that list on the Notes app on my iPhone. At some complicated appointments, I pull out my iPhone and record the entire conversation; then I take notes from the recording once I’m home. I always ask permission to record and have never been refused. I start the recording and then leave the Notes app open for easy reference while the iPhone (or Android device) continues to record without interruption. If you record the conversation with your doctor and listen to it at home, you will find yourself coming up with additional questions at that time.
Another reason to see doctors who are directly connected to a large tertiary medical center is because those centers all have patient portals to the medical center’s intranet, allowing you to easily send your questions to your doctor and receive answers, access the results of your various medical tests, and even schedule appointments. Patient portals help you to be an equal partner with your doctors.
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Be An Equal Partner With Your Doctors
The best way to advocate for yourself is to develop relationships with your doctors based on equality. I consider myself an equal partner with my doctors because, while they are the medical experts, I am the owner of my body and the expert on me. Become an expert on you.
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Empowered Patients Get All the Time They Need
Most good doctors will spend as much time as necessary with you if you are well informed, respectful, and compliant. When empowered patients ask pertinent questions and can maintain an intelligent dialogue, good doctors won’t end the office visit until both parties clearly understand all the issues. If you are not comfortable informing yourself and engaging in a dialogue between equals, it is essential that you bring someone with you to your office appointments who can act as your advocate, ask all the right questions, and take detailed notes.
Have a frank discussion with your doctors to get further clarity about your diagnoses, test results, treatments, and anything else you don’t fully understand. It may not seem important on the face of it, but don’t do this while you are dressed in a hospital gown. You will feel more like an equal when you are fully dressed, and that makes it easier to be your own advocate.
Empowered patients sometimes read about a new treatment that their doctors may not have mentioned. If you become aware of a treatment your doctor has not considered and you want him or her to look into it, you must become very knowledgeable in order to build a credible case; then approach your doctor as a colleague rather than as a demanding patient. For example, you could say you’d like to get his or her opinion on a treatment you found in a medical journal. Hand your doctor a copy of the article you found in the peer-reviewed journal. Don’t just provide the abstract. Pay for the download of the entire article or go to your nearest medical library and photocopy the entire article for free. On occasion I have gone to the UCSF medical library, found the journal articles I wanted, and then took a quick photo of each page with my iPhone. When I got home I put all the photos on Word documents that I could photocopy at home for a fraction of the cost of using the library’s copy machines.
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Is There A Chance You’ll Receive A Frightening Diagnosis?
Even if you are very skilled at asking all the right questions, as an empowered patient, you will want to take someone else with you to your appointment if there is a chance you may get a frightening diagnosis. Even doctors and nurses commonly panic and lose their rational, cognitive acumen when they are given a diagnosis of metastatic cancer or some awful neurodegenerative disease.
If you’ve just been diagnosed with a very aggressive cancer, unless you and/or a person close to you are very medically savvy, you may want to consider hiring a professional advocate to find the best place for your treatment, the best surgical and radiation oncologists, the best oncologist, and the best treatment for your specific cancer. If it is a rare cancer, you may need to travel to find the expert in that specific disease. Professional advocates can sometimes even open doors that get you in to see specialists who may ordinarily be booked up for months in advance. If the diagnosis is one that doesn’t require immediate treatment, you’ll have plenty of time to do that information gathering yourself, possibly obviating the need to hire someone to do it for you.
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The Importance Of Respectful Communication
Patients who don’t feel well much of the time sometimes get angry or impatient with staff at the office or clinic where they get their care. Although this reaction is natural and quite understandable, it will not serve you. When in pain, I have been a grumpy, irritating patient at times. What I try to do is to use mindfulness, distraction, or dissociation to gain distance from the pain, but sometimes I just remain grumpy; it never serves me well and I then feel like a disempowered patient. You will get the best care by being respectful and very assertive. If you don’t get quality care from an office clerk or other staff member, rather than get upset about it, go up the chain of command. I have only had to do this once, and because I was respectful and assertive, that person’s supervisor took good care of me.
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Research And Documentation
A great way to place your healthcare in your own hands is to become your own research librarian and to document everything relevant you learn. In addition to maintaining all the personal and general information on each of my medical conditions, I am also very quick to look up anything I don’t know. I carry a medical calculator app on my iPhone so I can double-check medication protocols. A good medical dictionary can also be very helpful. I used to carry one, along with a few medical reference texts on my old PDA, but today everything can be found online, obviating the need to purchase any texts. See all the recommended sites in the drop-down menu under the Resources button above. Be advised, though, that in searching the most recent research literature, you will read about very exciting new research discoveries that, unfortunately, will almost always take many more years to go from bench to bedside than first predicted.
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Knowledge Is Power
To a certain extent, the degree of your medical knowledge will be commensurate with the quality of care you receive. That’s why when doctors become patients they tend to get at least the standard of care. Little things you learn along the way can make a difference, such as requesting an IV antiemetic before the insertion of a nasogastric tube. One source of important information is from other empowered patients. I highly recommend you go to: https://www.patientslikeme.com
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Know Where To Look For Reliable Information
In searching for new treatments, unless you are very medically savvy, stick with websites that end in “.gov” or “.edu” because they are the two most trusted categories. Two of the best are http://www.ncbi.nlm.nih.gov/pubmed for primarily reading medical studies. For more general studies, but including medical, go to: https://scholar.google.com/
Also, go to the site for the medical society that represents the particular specialists who treat your diagnosis. Look up abstracts being presented at recent or upcoming annual conferences because researchers generally present their work in advance this way, up to a year before the treatment is published in medical journals. It’s important to differentiate between patient support associations, such as the Immune Deficiency Foundation, and the corresponding professional associations (American Academy of Allergy Asthma & Immunology or the American College of Allergy, Asthma & Immunology). Searching abstracts will provide not only information on cutting-edge treatments but also the names of the leaders in the field with whom you can then make contact. For reliable general information go to NIH’s National Library of Medicine: https://www.nlm.nih.gov
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Complementary And Alternative Treatments
Every year, consumers spend tens of billions of dollars on worthless vitamin and other supplements and on unproven treatments by various types of clinicians. A small percentage of such treatments are evidence-based and very efficacious. For reliable information on evidence-based versus non-evidence-based treatments, go to: https://nccih.nih.gov
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Patient Support Associations
Once you have a clear diagnosis, get involved with the patient support association that represents patients with that disease or condition. You will get ideas by connecting with other patients. For example, my hematologist referred me to an immunologist in the immunology clinic where I was getting my care, but a patient who was a member of the Immunodeficiency Foundation (IDF) patient support association gave me the name of a different immunologist at that same clinic that specialized in my specific condition. Although the first immunologist was amply qualified to care for me, I would not have known about the subspecialist had I not spoken to people at the IDF. See the Medical Resources page within the dropdown menu of the Resources button above. The most common category of chronic medical conditions is the autoimmune diseases. Twenty percent of the population lives with an autoimmune disease. If you are one of them, you may want to join the American Autoimmune Related Disease Association (AARDA). AARDA is the only national nonprofit health agency dedicated to bringing a national focus to autoimmunity, the major cause of serious chronic diseases. http://www.aarda.org
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Maintain Your Own Medical Records
As I mentioned earlier, it’s important to keep a record of all your medical information, as well as any questions or observations you may have. I keep everything in Word documents on my laptop and an abbreviated version of them on my iPhone. Using whatever system works best for you, what follows are all the categories of information you should track. Doing so will allow your doctors to provide better care, and if you have to be admitted to the hospital, your records will help you get better care there as well. Creating these various documents can seem overwhelming, but once you have them all set up, they are easy to maintain, provided you keep up with them. I recommend having a separate Word document in your mobile device for each of the following:
Consults (office visits): Audio-record the session and then take notes from the recording in the comfort of your home. Obviously, for a simple, uncomplicated office visit there is no need to record the conversation. But I live with some complex medical conditions and I have often thought of questions for my doctors, only to find that I already had the answers, which I had recorded from a previous office visit.
Medications: If you are on a lot of medications, maintain a document for all those medicines, listing both adverse side effects (including allergies) and positive effects you’ve experienced. You should include all past medications along with any side effects or adverse events.
Immunizations: Keeping a record of the dates of all your immunizations can save a lot of time and prevent duplication. Inadvertently getting an immunization twice within too short a period of time can actually make you very sick.
Procedures: Keep a document listing all treatment procedures including surgeries. Note the positive and negative effects of each surgery or other interventional procedure.
Pathology reports: Maintain results of all lab tests and other diagnostic procedures such as biopsies, x-rays, and scans. This document will make it easy for you and all your doctors to track all abnormal lab values and to see any trending. Get a CD or flash drive in DICOM (Digital Imaging and Communications in Medicine) format of all your MRI (magnetic resonance imaging), CT (computed tomography), US (ultrasound), and other scans. This information will be useful when you go for second opinions at other institutions. It can help them to avoid duplicating an expensive or invasive test, the previous results of which may sometimes still prove very useful.
Doctor’s notes: Request copies of all comments, management notes, consultant reports, and surgical notes from your doctors.
Your personal notes: Still another document you can create can contain any useful information you have run across that is related to your various conditions. This will include any information you download from reliable websites, learned from doctors, and information you may have learned from patient support associations.
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Read the latest treatment guidelines for your diagnosis. You can always find the guidelines at the association representing the specialty that treats your condition. For example, for urological problems it would be the American Urological Association. However, keep in mind that guidelines are often slow to change and that new information may make an official guideline obsolete. Nevertheless, it can be useful to become familiar with the guidelines for standard of care.
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Finding the Right Clinical Trial
Years ago, my immunologist urged me to get into a clinical trial at NIH because my immune profile is so unusual that he wanted me to have access to cutting-edge researchers. I have now been going to Bethesda from California once or twice a year since 2010. If you are accepted into a trial at NIH, you will get state-of-the-art care from world-class clinical researchers and will have access to the very latest treatments. As if that isn’t enough to convince you, if you are a participant in a study at NIH and you need medical care, they will provide it at no cost to you. Here are some ways to find out about clinical trials:
- Check with the organization that advocates for your particular diagnosis.
- Ask your specialist.
- For new medications in development, go to http://www.phrma.org/innovation/meds-in-development.
- Contact NIH, NIAID, NCI, or other divisions of NIH: http://www.centerwatch.com/
- Also, be sure to go to http://www.nih.gov/health-information/nih-clinical-research-trials-you
It is essential that you plan for the future with advance directives in order to assure that your wishes are followed if you are no longer well enough to make your own medical decisions.
There are three general types:
- Living Will: Also known as a healthcare directive or advance directive, this legal document describes the types of life-sustaining measures you desire.
- Durable Power of Attorney for Healthcare: Also known as medical or healthcare power of attorney, or healthcare proxy, this legal document designates someone you want to make medical decisions for you when you are not conscious or are too sick to do so. This is absolutely essential to have in place before you are admitted to a hospital.
- DNR: This is ordered by your doctor upon request and must be signed by you. It allows you to refuse cardiac or respiratory resuscitation if at some point your heart or respiration stops. Although it may be in your chart when hospitalized, it should also be available for paramedics and other emergency responders to your residence.
I hope you found this section of my website helpful. A lot of work went into it. For much more information, consider buying my two books: See The Books button on this website.
I cannot overemphasize the importance of becoming an empowered patient, especially if you live with chronic medical conditions. Becoming an empowered patient leads to more general self-empowerment and a sense of life-mastery. You can increase wellbeing and improve your health simply by becoming an empowered medical patient. Knowledge is power.