Why am I asking a question that seems to have only one sensible answer? If you are a physician or other mainstream healthcare provider, I think you know where I’m headed. Yes, I want to talk about one of the most cringe-inducing, hot topics in today’s American medical system – patient satisfaction. I touched on this issue briefly in How to Kill a Medical Practice; the title of that piece should give you some idea of how I feel about the way medical groups currently approach patient satisfaction. Today, I’d like to dig a little deeper into one of the scourges of our daily practice of medicine.
Why Patient Satisfaction has Become Huge
Historically, there has not been much of a focus on customer service in the delivery of healthcare. This is partly because in the past, it mostly took care of itself. In the good old days, there was a much larger proportion of doctors working in small, private practices. The receptionist and clinical staff knew everyone by name. There weren’t as many insurance hassles, for the patient or the doctor. Costs were more reasonable. The internet wasn’t a thing yet, so patients looked to their doctors – instead of blogs* – for advice. In summary, society respected doctors, and it was generally assumed that doctors were doing their best to help people.
Over time, there has been massive consolidation of medical groups, to the point where the little guys with a shingle out front have become rare. Where there used to be dozens of players in a healthcare market, there may now be just a handful of behemoths, all competing for the same pool of patients. But these patients are savvier than in the past, and they (rightly) want to make sure they’re going to the best doctors. Many of these people also (rightly) see value in being treated like humans with feelings, which can be challenging when dealing with any large business – medical or otherwise.
The increasing competition for patients’ business has led to a palpable shift toward the consumerization of healthcare. There’s only one problem with that – patients are not customers, consumers, or clients. And they most definitely are not “always right.” The highest quality, most compassionate, most ethical doctoring involves giving patients what they need, even when it doesn’t coincide with what they think they need.
In addition to the financial pressures from increased competition for patients’ routine healthcare needs, hospitals are also feeling the pain. They are grappling with a 2012 provision in the Affordable Care Act that withholds a portion (2% in 2017) of total Medicare reimbursements for their inpatient care. 30% of this 2% is disbursed only to those hospitals that are deemed to have acceptable patient satisfaction scores.
There is an axiom in the medical insurance world that whatever Medicare is doing, commercial insurers will soon follow. What is not as widely appreciated is the impact the government’s whims can have on the operations of independent medical groups. In point of fact, many healthcare delivery organizations have followed the government’s lead with respect to withholding a portion of physicians’ salaries, to be disbursed only for good patient satisfaction scores. My organization has actually doubled down on the philosophy and piloted compensation schemes to withhold salary for both performance and patient satisfaction. Of course, because doctors are often financially illiterate, our administration succeeds in getting away with calling the payouts “bonuses” instead of “holdbacks.” I’m sure you can imagine how much that irks me.
You can see how patient satisfaction has become a flashpoint issue. Medical groups and hospitals want to be able to tout high scores they believe will attract more business and more government revenue. Therefore, they exert all kinds of pressure on their physicians to raise their satisfaction stats. Patients now have the power to appropriately punish bad doctors, but they can (and do) wield that power to also punish physicians who have patiently explained why their fatigue and weight gain is not due to the mythical condition of adrenal fatigue. They lambast doctors who attempt to decrease the incidence of drug-resistant bacteria by declining to prescribe antibiotics for a viral respiratory infection. And they downgrade doctors who try to prevent opioid-addiction by being stingy with narcotic prescriptions.
How do we Define Patient Satisfaction?
Many of you may think that it is perfectly reasonable to tie compensation to patient satisfaction and physician performance. On a conceptual level, even I agree with the philosophy. The problem is that nobody – I mean nobody – has yet figured out how to adequately define patient satisfaction or physician performance. Since physician performance is not the focus of today’s post, let’s table it. I’d like to move on to how patient satisfaction is being defined.
Earlier, I mentioned that a portion of a hospital’s Medicare reimbursements is withheld for patient satisfaction. So how does the government decide which hospitals will earn back the withheld money? They send out a survey to patients, of course! Specifically, they ask a random sample of patients to rate their recent hospital stay on the HCAHPS questionnaire. “H-caps” is the acronym for the easily rememberable Hospital Consumer Assessment of Healthcare Providers and Systems. My mouth feels like it’s full of marbles just typing that out.
CMS (Centers for Medicare and Medicaid Services) touts H-caps as “the first national, standardized, publicly reported survey of patients’ perspectives of hospital care.” Is there value in having a standardized assessment of such a thing? Probably. But the devil is in the details, of course. A 2015 Atlantic article describes one of the pitfalls in using the survey data:
For example, in a section about nurses, the survey asks, “During this hospital stay, after you pressed the call button, how often did you get help as soon as you wanted it?”
This question is misleading because it doesn’t specify whether the help was medically necessary. Patients have complained on the survey, which in previous incarnations included comments sections, about everything from “My roommate was dying all night and his breathing was very noisy” to “The hospital doesn’t have Splenda…” …An Oregon critical-care nurse had to argue with a patient who believed he was being mistreated because he didn’t get enough pastrami on his sandwich (he had recently had quadruple-bypass surgery). “Many patients have unrealistic expectations for their care and their outcomes,” the nurse said.
In my world of outpatient medicine, there are a few companies in the country that have assumed responsibility for administering patient satisfaction surveys and collating the data for the medical groups paying for the privilege. If you have received medical care in the US, you have almost certainly received one of these surveys by email or snail mail. The survey typically asks you to grade your care provider and other members of the team using criteria like friendliness, quality of explanations, demonstration of concern, etc. A 5-point scale is typical, ranging from very poor (1) to very good (5).
This all sounds straightforward and reasonable, right? Wait for it. In my group, results have been reported to us for years using the metric of our percentile for the highest mark of “very good.” According to the survey company – I have to take their word for this, as they do not share other groups’ raw data with us – we are graded against our specialty-matched peers from around the country. Apparently, most groups using this company have amazing patient satisfaction numbers, as the slope of the curve is extraordinarily steep as you move down from very good to good. Therefore, it is quite possible to have a majority of goods and very goods but land in the 30th to 40th percentile.
Unfortunately, my group maintains a laser-like focus on that “very good” percentile number, so the message doctors like me constantly receive is, “Why don’t patients like you? Why can’t you be a better doctor?” And trust me, there are a lot of doctors like me where I work.
The Problem with Patient Satisfaction Data
So what’s the counterargument? For starters, where I and many of my colleagues reside on the percentile curve does not jive with our subjective experience of how satisfied our patients are.
Seriously, HD? You’re always harping on how proud you are to be a card-carrying practicer of evidence-based medicine. Now, you’re going to argue that your subjective impression of how satisfied your patients are is more reliable than the hard data collected by the survey company?
I know this doesn’t look good, but bear with me while I explain myself. Then you can call me out. Almost every day, I have at least one patient who: asks me to reassure them I’m not leaving the organization; tells me I’m the only reason why they keep coming to my group for healthcare (they’re mostly frustrated that their PCPs keep leaving); or thanks me for explaining things better than any doctor they’ve ever seen. In addition to satisfying these patients, I also work hard to satisfy my colleagues who refer their patients to me. For many of the last 9 years, I have been named a “Top Doctor” by my regional peers.
I get it; you think you’re a good doctor. Great. Why do your patient satisfaction numbers suck, then?
First of all, I don’t think they suck. As far as I know, most people rate me at least “good.” But “good” doesn’t do me any good, because my percentile rank is based on “very good.” For me, good = F. When defining patient satisfaction as my group does, I think we instantly create a huge cohort of under-performing physicians.
Second, I tend to see a large number of the “worried well,” people who believe they have a hormonal etiology for their vague symptoms. Often, I’ve been set up for failure before these folks even step foot in my office, because their naturopath has already convinced them that they have multiple deficiencies and excesses. When I patiently explain that most of what they’ve been told is inaccurate and, in fact, their “hormones” are normal, how do you think that is received? Sometimes, people are thankful. More often, they’re very dissatisfied, which is not surprising. They typically enter my office with multiple “problems” that an Endocrinologist should be able to fix, but they leave my office with fewer diagnoses than they came with and no answers. I absolutely hate it when I have to answer the question, “But what do I do now?” with “I’m so sorry that I can’t be more helpful, but I don’t know. I would encourage you to sit down again with your primary care doctor and see if the two of you can come up with any other ideas.” This does not bode well for my satisfaction stats.
So how do you explain all the other doctors who have great satisfaction scores? Don’t they have the same challenges you do? How do they do it, and why can’t you just replicate what they do?
Funny you should ask that. Of course I’ve wondered the same thing. If I consider myself a great doctor who patients like, how can I reconcile that with the fact that 60% of my peers are better-liked? 1-2 years ago, I decided to dig into this by doing some reading. There are now numerous written accounts of how doctors with previously abysmal satisfaction scores swallowed their pride, implemented strategies to improve satisfaction (sit down, face the patient instead of the computer, don’t interrupt for the first few minutes, etc), and boosted their percentile up to the 80s or 90s.
I found that most of the strategies were things I was already doing, but I vowed to be more conscious of each step, to make sure I was doing everything recommended. There were a few tips that involved things I was not always doing (e.g. thanking the patient for coming in at the end of the visit), so I endeavored to find ways to implement these in ways that didn’t make me vomit (e.g. saying “it was good seeing you again” or similar, instead of thanking them for entrusting their healthcare to me).
After more than a year, I have moved the needle…not at all. In fact, I think my numbers actually got worse after some of the structural/logistical changes my organization has made (e.g. bad parking, poor check-in procedures, and other things over which I have no control).
To answer your earlier question, I really don’t know how my Endocrinology colleagues around the country are killing it when it comes to their patient satisfaction stats. I am truly baffled, so if any of you have a unique Rosetta Stone for patient satisfaction, please share it in the comments below.
Does Patient Satisfaction = Better Healthcare?
Now this is a fascinating question. I touched on this tangentially in Why Subspecialist Physicians Go Rogue – Part II. In that piece, I discussed the physician ego and how it fuels the desire to help people, even if that means inappropriately convincing oneself and the patient that the patient has a disease within the physician’s realm of expertise. Some of these rogue doctors have hundreds of patients in their panels – all spinning their wheels – all becoming pathologically dependent on these doctors for more and more advice…none of which helps.
One of the things I find intriguing about the above situation is that these patients can be incredibly satisfied with their doctor, even when they’re not getting better. I see patients who swear that Dr. Jones is the “only one who ever helped me,” even as they are in my office trying to figure out why they have all the same symptoms that predated seeing Dr. Jones. It is a disturbing example of cognitive dissonance, but easily explicable: Dr. Jones validates everything these patients say. It’s one thing to validate patients’ symptoms, reassuring them you believe that what they are experiencing is real. It’s another thing entirely to validate the straight lines patients draw from A to B when reaching their own (usually erroneous) conclusions about their vague medical problems.
While I do know some highly competent doctors with great satisfaction stats, the aforementioned “people-pleaser” doctors with excellent patient satisfaction scores are not physicians to whom I would send my family members. Lest you think I’m going off the rails here, I have data that supports my position. In March 2012, a landmark study was published in Archives of Internal Medicine. Joshua J. Fenton, MD, MPH et al reported their analysis of data from 50,000 adults, showing that the most satisfied patients:
- were 12% more likely to be hospitalized.
- had total healthcare expenditures and prescription drug expenditures that were both 9% higher.
- were 26% more likely to die.
In case you need additional convincing, the author of the Atlantic article I mentioned earlier did her own research and found similar data:
I examined Medicare’s provider data for thousands of hospitals—the data on every hospital in the country that the agency makes publicly available. I found the hospitals that perform worse than the national average in three or more categories measuring patient outcome. These are hospitals, in other words, where a higher number of patients than average will die, be unexpectedly readmitted to the hospital, or suffer serious complications. And yet two-thirds of those poorly performing hospitals scored higher than the national average on the key HCAHPS question; their patients reported that “YES, [they] would definitely recommend the hospital.”
That’s right, folks. Patients who think their care is great are often totally wrong. I’d like to reiterate a finding from Dr. Fenton’s Archives paper, because it’s just that important: the most satisfied patients were 26% more likely to die. This study has been criticized intensely over the years, as is any medical study that contradicts strongly-held, prevailing dogma. While there are other studies that suggest patient satisfaction is not a good indicator of quality, this one became the poster-child for vilification. This should not be surprising, as it landed when physicians like me were especially fed up with satisfaction surveys that didn’t seem to capture the quality care we were providing. So we began pushing back hard against our administrative overlords, citing Dr. Fenton’s study as evidence that we needed to be more thoughtful about the interpretation and application of patient satisfaction results.
But it’s hard to teach old dogma new tricks, especially in my organization. Nobody in administration wanted to slow the train down, citing other studies that show higher patient satisfaction is a good thing. I absolutely agree that a patient who hates her doctor is much less likely to follow through with the doctor’s recommendations, let alone return to see that physician. I really don’t need a study to tell me that, but sure enough, there are studies out there that do just that.
The problem here is that we have no way of teasing out the highly satisfied patients who are getting great care from the highly satisfied patients who are receiving terrible care. Further, we cannot break out the cohort of physicians with mediocre scores who are delivering better care than some of the people-pleasers at the top. So what the heck are we doing placing this much emphasis on satisfaction scores and tying compensation to them? I’ll tell you what we’re doing. We are guaranteeing that some of our best doctors will be told that they are failures. This will, in turn, accelerate physician burnout, as physicians who take great pride in the care they deliver will be utterly demoralized. Unable to move the needle on patient satisfaction, they will fry to a crisp, leave clinical medicine, and we will be left with even fewer great physicians in practice. You think I’m exaggerating? It’s already happening.
Should You Hate Your Doctor?
Let me point out that the Archives study was observational, as is most such research. It cannot prove causality – it can only show association. So I’m not saying that being a satisfied patient will kill you, nor am I stating the contrapositive that if you want to remain alive, you should hate your doctor.
I simply believe we should be significantly more thoughtful about how we interpret and use patient satisfaction scores. If you have the time and don’t mind the requirement to register (for free), Medscape published a fantastic interview with Dr. Fenton, the author of the Archives study. In it, he offers a finely nuanced discussion of the ongoing challenges we face with assessing patient satisfaction.
I will leave you with the final question and answer from that interview:
Medscape: What can physicians do if they are not receiving high satisfaction scores but believe that they are delivering quality care by other measures?…
Dr. Fenton: It depends on how you define “low” satisfaction scores. Physicians consistently scoring at the bottom 20th percentile of CAHPS may be repeatedly making some simple fundamental communication missteps that are causing recurrent problems in their encounters. Those physicians might benefit from simple interventions…
On the other hand, if a physician’s satisfaction scores are in the middle of the bell curve for his or her peers and this physician is doing his or her best to communicate with respect, empathy, and care, then we have no compelling evidence to force that physician to change [HD: italics are mine].
Translation for all medical groups bombarding their good physicians with futile “patient experience” initiatives: BACK. OFF.
*Yes, I am aware of the irony in complaining about people looking to blogs for medical advice…on my medical blog.
Are you a physician who struggles with how to improve patient satisfaction? What seems to work for you, if anything? Do you believe that the scores have value, or are we simply trying to raise an arbitrary metric to an even more arbitrary threshold number? As patients, what makes you most satisfied with your doctor? What makes you most likely to actually fill out the survey and rate your doctor 5/5? Comment below!
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25 Replies to “Should You Hate Your Doctor?”
“Many patients have unrealistic expectations for their care and their outcomes,” the nurse said.
I used to practice OBG. I came to the point of nausea when a new patient would come in complaining of everything from the economy to “my husband just wants to have sex/not have sex” and it was *always* “I’m sure it’s my hormones, Doctor”.
(I don’t know how you do endocrinology….the physiology is interesting….the patients would be “challenging”, to say the least).
I will say something no one else has. The problems facing medicine are due to the loss of doctors being “paternalistic”. Back in the old days, when I started med school, we were taught that we were to do what was *right* for the patient, not what they wanted. (Kind of like…oh…ummmm….a “parent”). By the time I was in my first residency, the winds of cultural change were blowing, and we were being taught to “consider” the patient’s wishes. Now, we are kind of a Santa Claus, who should dispense the “toys” (medications and treatments) that the “kids” want. If we don’t, we are being judged by the Patient Satisfaction Scores.
Anyone else remember when we were told “don’t prescribe too many narcotics, patients will get addicted!”, then later told “pain is the fifth vital sign”, and untreated pain was a problem! ??? “Adequacy of treatment” was judged by how well the patient felt they were treated.
Paternalism had/has it’s faults. So does parenting. So does any other fiduciary relationship. (Back in the old days, even bankers had fiduciary constraints. I vividly remember an elderly banker telling me…”son, I can make that loan. You don’t *need* that loan.” He turned me down. I was livid (and young and dumb. He was right…I didn’t, he saved me from a financial mistake). On that day, that banker would have gotten a lousy “customer satisfaction score”. However, he did the right thing for me.
In my opinion…until we docs regain control of the health care system (which I doubt we ever will)…patients will suffer harm. Did they suffer harm a few decades ago? Yep, they did. But I think the *rate* at which they suffered was much lower.
A secondary problem, which you alluded to…is the rating system. Reminds me of the “officer rating scale” in the military, in which anything less than an “This officer is outstanding, and will make general someday” was damning. The “scale” ….wasn’t. You were either “the best/most outstanding/brightest” officer, or you were passed over for promotion. In a normal evaluation, there would be a “bell-shaped” curve….a few outliers on the top, and the bottom…but we have condemned ourselves to a Lake Wobegon life….we all have to be not only “above average”, but in the top tenth percentile…which of course is impossible!
Our brilliant administrators have failed math. Everyone cannot be at the 90th %ile.
I hear what you’re saying about paternalism. While I don’t think most docs would advocate returning to the days of patting a patient on the head and dismissively saying “there, there, you’ll be fine,” I do think that most docs would agree that there has been a dramatic loss of respect for our professional opinion. Part of that is related to the rise of “shared decision making,” which has morphed into negotiating with patients. I hate negotiating, when I know what would be best for them, but I cannot lead them to see it. At times like those, I would love to be able to say, “Just do it my way and you’ll thank me later.”
+1 to your comment about how we can’t all be at the 90th %ile. It is a statistical impossibility that our administrators refuse to recognize because – after all – our group is more special than all other groups.
“Paternalism” has many connotations. I agree, we don’t need to “pat on the head, and say ‘there,there'”. I’m thinking more along the line of “son, I understand you want ice cream and cake, but vegetables and fruit are better for you”…the type of “paternalism” I used with my kids.
Why? Because *I knew more than they did* about what they *needed*, not wanted. “Good” paternalism let’s them make choices, when neither choice is dangerous…(“you want to wear a skirt, or pants?”). You don’t approve a choice (“hey, let’s go play in the street!”) when it’s bad.
I’m quite sure my kids would have not given me a “parent satisfaction” rating…
Totally agree. Well said.
It shouldn’t be a popularity contest, but I would prefer to have a physician who is in the 90% ile. I am not sure if the standard has been lowered for medical school as it has in other professions. Strange how every student is on the honor roll where when I was young, it was only the ones who truly excelled. I rarely meet someone who recommended their doctor.
so, 9 out of 10 doctors aren’t adequate for you? It’s a mathematical impossibility to have all docs in the 90th %ile of their med school class, or their residency.
Do a thought experiment….eliminate the “bottom 50%” of doctors. Now….you have a *new* “bottom 50%”….when do you stop?
Or, you just prefer that *you* get the 90th%ile docs, and everyone else can have the lower performers?
Well, my experience has not been good with some of these doctors you claim are so qualified. I guess I am wrong to want a qualified doctor vs one who isn’t.
I’ve always heard that high satisfaction = more death is because the best hospitals end up with the sickest patients. I’m especially thinking of the university and teaching hospitals which get referrals from all over their region.
That’s a great question to raise. I suspect there is some truth in this, but I don’t know if this has been controlled for in the studies out there looking at the issue. I also suspect that there are many hospitals and outpatient facilities that do a great job making patients feel comfortable and well-cared for, but they don’t do as good of a job with their actual medical care. Unfortunately, much of the “quality” we deliver (or don’t!) is invisible to the patient, so the patient can be very satisfied and get poor care.
Great article. I would love to rate my doctors highly, but I never get a survey! Maybe they’re only sent to a certain few?
I am happy that Medicare is “rewarding” hospitals for lowering readmission rates, lowering rates of nosocomial infections, pressure sores, etc. The good thing is that patient satisfaction is one piece of this score.
I’m a RN, and I’ve noticed that people do not want to listen to sound evidence-based medical advice. A friend on Facebook recently decided to stop wearing deodorant because it “causes breast cancer.” I told her there’s no evidence of that, and who is the one who is ridiculed? Me. Forget it. They can believe what they want. Now I only give health advice in the context of my family, my classes, or work.
Thanks again for your blog!
Just reading an article on NPR about a study that just came out linking antibiotic prescriptions to higher doctor ratings.
Great article, thanks for recommending it: https://www.npr.org/sections/health-shots/2018/10/03/653446952/patients-give-doctors-high-marks-for-prescribing-antibiotics-for-common-sniffles
Yet another piece of evidence that should persuade Admin to not link compensation to patient satisfaction scores.
As a patient I think one huge problem that hasn’t been mentioned explicitly is that different patients want different things, and that as a doctor you don’t usually have time to find out what each patient wants. I’m very much a ‘give me the facts however distasteful, rank your treatment options with regard to evidence for efficacy, give me your reasons for your advised treatment’ kind of patient. I have what I know to be more than an average knowledge of human biology – it was a major art of my degree, albeit nearly forty years ago now – but nowhere near the level that is needed to be a doctor, so I’ll understand most explanations you are likely to make or be able to go away and read up on what you say in articles I can access, carefully selected sites and blogs. I value doctors who tell me bad news straight, who admit when they don’t know the answers to a question and need to consult a consultant or colleague (I’m in the UK so consultant is the highest rank/skill within any speciality), who take into account that I do have enough knowledge to make giving me extensive explanations worth their time. However I know that I’m somewhat unusual, not just because I know enough to know that I really don’t know much, but also because I don’t need to have an emotional connection to a doctor to rank them highly, indeed I can’t say I really like any of the GP’s I’ve seen at the practice I am registered with, however I do trust them to do a good job.
I’m not sure that’s much help in increasing your ratings!
I find this fascinating. I would think that you are, indeed, unusual in this respect. I wish there were more of you, as I think my scores would be higher!
I work in a hospital and the parents have so many interactions with students, residents, consultants and attendings that it is near impossible for them to sort out who is who and who they should be rating on their silly surveys!
Almost noone is satisfied when they arive to our floor and most leave happy because their kids are better. I bet length of stay, severity of illness and lack of complications are better predictors of “patient satisfaction” then patient satisfaction is…
No one is satisfied hearing that they need to loose weight, exercise, stop smoking, dont need antibiotics for their cold, that homeopathy is magic and that you dont even need to use needles to get an effect from acupuncture etc…..
Like you said patients are not customers and they certainly are not “always right.”
This is a strange measure to be basing reimbursement on and is incentivizing the wrong behaviors from providers. Incentives are powerful. Poorly thought out incentive systems can have insidious effects on how people behave and will influence care in all sorts of unpredictable ways.
Amen to your last paragraph, especially.
I realize this post is over six months old, but just found it.
I wanted to tell you about my car. One day the brakes did not work. I stepped on them and stepped and stepped but my car still hit a tree. I too it to the car doctor and I got a big bill and when I got it back, no new car smell and the floor mats weren’t vacuumed. Well, @&$&@ that place. I left a nasty review and next time the brakes fail and I hit a tree, I’m going to take my car (that I abuse mercilessly) to the other place- at least they will leave that new car smell. They better.
Of course I’m alive today and my car works fine, but that’s not the point is it? A car place is supposed to do what I want!
This shows the discrepancy between medical providers and the public, some of whom each made posts above. One posted “I only want to see “90%” but that doesn’t mean anything, and I wonder if they even read the article. Personally, I only want one who can fix my brakes, not tell me the meaning of life.
PS primary care is leaving because they can’t stand the low pay and increased risk to listen to the constant sniveling and chance they might miss a PE but are having to spend an inordinate amount of time explaining why antibiotics don’t work for viral infections and the risk of c-diff …ugh, don’t get me started.
First, let me say I have been a patient care provider as a Respiratory Therapist and a patient, so I have the view from both sides.
Now, my county hospital gets a huge zero on my survey. Why?
I was in for four days back in 2018, severely ill with the flu, coughing 24/7 with copious amounts of foamy white thick secretions….and they could not even provide a basin for me to spit it into. I had to use the plastic water bottles that came with each meal.
Now, note I showed these bottles to each nurse and respiratory therapist who came in the room and kept asking for a larger container, so I would not had to spit into the open trashcan. No can do.
Then the respiratory therapist tried to give me a breathing treatment with a medication I am allergic to, argued I should take it because the physician ordered it…I sent her to get back to my chart, that clearly had that medication listed under “Patient Allergies”. Talk about a sourpuss attitude because a call had to go to the physician to change the medication… By the way, the physician, the nurse, the pharmacy and the respiratory therapist all missed the allergy that was clearly written in the chart.
If you are not proactive as a patient, you could wind up being a dead patient.
Oh, and when I got a full copy of my medical records from that hopitalization, the nurse notes stated for the whole four days, that I was comfortable with NO COUGH, and NO DISTRESS for the entire four days. The Respiratory notes the same no cough, no distress though I had to wear my sleep apnea machine a few times while awake, because I had trouble breathing from all the secretions and low O2 saturation.
Oh yeah, and I had to bring my own Sleep Apnea machine from home, as hospitals no longer provide sleep apnea machines to inpatients who have sleep apnea.
One time I was in a hospital 1 & 1/2 hour drive from home, emergency admit…I had to hire a TAXI TO BRING MY SLEEP APNEA MACHINE FROM HOME!!!
The respiratory therapist there told me to go to sleep, if I had problems and stopped breathing the nurses would come in and save me. BS…,my heart monitor was throwing all sorts of PACs and PVCs, irregular rhythms and the alarm was constantly going off while I was awake….did you think I was going to go to sleep? Nope, I was awake 33 hours straight until I finally got the $200 to pay a taxi to bring my machine from home. Thank goodness, my autistic son was at home to give it to the Taxi driver to bring my sleep apnea machine to me in the hospital. So I could finally get some sleep!
Since 1980, hospital medical care has descended into the deep pits, back then you could not even bring a radio from home for entertainment, unless the hospital electronics department checked in first and ok’d it’s use in the hospital.
Now you have to provide your own $3,000plus Sleep Apnea machine as an inpatient, or else you will die from it’s lack in the hospital, because no hospital will provide a sleep apnea machine. A machine covered in who knows what bacteria from my home, who cares?, no one. Just plug it in the wall, no cleaning, and no electronics check. And this is a machine with a built-in device to connect to the cellphone towers in order to send info to the Cloud, automatically.
Medical care now officially suc*ks. And that is my professional opinion a Respiratory Therapist who learned her craft back in 1972 at a teaching hospital for a Philadelphia medical school for MDs.
Wait till you hear about my experience with endocrinologists, that is a doozy, too…….
Endocrinologists. …… Let me say, since the 1990s so much new is out there that to keep up with it all, can be extremely difficult, just the knowledge due to genetics can be mind-boggling.
I never had an endocrine problem of any kind until I moved away from the ocean back in 1997, never ate fish due to fish kills in my childhood turning me off the smell of fish, and I stopped using salt in the 1970s due to a family history of high blood pressure. So living always by the ocean meant my iodine came from groundwater and the air, as I visited the ocean daily to put my feet in the water and the sand.
So I move far inland in 1997, and by 1998 my bloodtest show I am now Hypothyroid. Primary sends me to a nice endocrinologist, very nice guy who puts me on Synthroid….. All is well, then in 1999 I starting getting very sick again, all tests come back normal, and no one can figure out why I look and feel so bad.
Seeing as I was trained at a teaching hospital, and my final year report paper was on blood transfusions (a 23 page, single-spaced hand-typed paper researched in the huge teaching hospital medical library back in 1974 which I still have tucked away in my file cabinet), I know how to do medical research and I had a computer and internet access to do it with.
My research lead to deciding my needing a IGF- 1 bloodtest to check my human growth hormone (HGH) level. Argue with my Primary physician who finally orders the test, doc says the level is “a bit low but still OK”. I go to the hospital medical records to get a copy of the test… The IGF- 1 test result was only 29… A level of 29 was critical, so I called my endocrinologist who immediately put me in the hospital for a challage test….a test that my pituitary gland failed.
My pituitary gland was only putting out a tiny smudge of HGH, not enough to keep my heart from starting to fail, so now I take daily HGH shots and I regained my health for awhile.
Then in 2015, my endocrinologist (a nice guy I really like) told me I was Hyperparathyroid, and I thought nothing of it, until in 2016 my bone density test came back as Osteopenia and the results were almost in the Osteoporosis range. Now, 16 months earlier, my bone density was normal, but my endo said not to worry…he was keeping an eye on it.
Well, excuse me, but when you go from Normal Bone Density to Severe Osteopenia in only 16 months, there is a big problem.
Back to the internet, and research lead me to the Norman Parathyroid Center in Tampa, Florida where I sent them my test results and they scheduled me for immediate surgery five days later, in December 2016.
It took only 24 months after the Parathyroidectomy to rebuild my bone back up to Normal Bone Density with Calcium Citrate supplementation, but if I had waited I was in danger of a stroke….. Why?
Because my Vitamin D level was so low, my Primary had me taking 10,000IU a day and the blood level was still extremely low and she wanted to even increase my daily amount.
[HD: Redacted. Dubious advice.]
Oh, by the way, my high blood pressure, it went away after a week after surgery, just like the surgeon told me it would and I was able to stop taking 40mg of Micardis a day.
Seems Hyperparathyroidism also causes High Blood Pressure. [HD: There is an association between primary hyperparathyroidism and hypertension, but it is not clear that HPT is causative.]
But I still love my dear old endocrinologist, he is my age and of course he was not completely up to date on the newest info, plus he is retiring in the Fall, so I get to have a newer endocrinologist. ……..
The new ones coming out of school are even worse than the old ones….at least the old ones listen when you give them the newest info from PubMed studies.
Let me tell you about my experiences with the newest batches of endos coming out of school, that one really takes the cake….
Ahhh, the new endocrinologists coming out of medical school are not only clueless, they will not listen either.
Do, my old endo whom I love is retiring in Fall 2020, so in early 2019 he transferred me to a new female endocrinologist fresh from school. The first thing she did was stop my BID 5mcg of Cytomel, because ” you are supposed to have lower thyroid levels when you are older”.
Three days later I was seeing my Primarycare Physician because I was crying 24/7 and could not stop crying, my hair was falling out in patches, and I looked and felt like s*hit. My Primary doc was horrified, she said “What happened to you?” and I told her about stopping the Cytomel as the new info wanted. Hours later after stat bloodwork at the hospital, etc, my Primary physician put me back on Cytomel but increased it from 5mcg of Cytomel BID to QID. Let me say, I love my Primary doc, and she lovesme. We understand each other, she knows I will go whatever it takes to get better, change my diet exercise etc before taking any meds. Plus she knows if I come in with PubMed research, that 90% of the time I already know what is wrong and how we can work together to fix it. However, she decided I needed twice as much Cytomel as before, instead of the BID I thought I should go back on.
Well, three days later, my chronic pain level dropped so far, I was able to take half as much pain medication, and my pain level dropped from the constant 8-9, down to a 2-3 pain level on half the medication. What was going on????
Being a curious and nosey person with a knowledge of medicine and a computer able to access PubMed, I went on PubMed and read a Basic Endocrinology medical school textbook to get more info. My focus in school was the CardioPulmonary system, so I was weak on Endocrinology.
Well……right there in first few chapters of a Basic Endocrinology medical school textbook, it stated “when you get the patients T4 and T3 into midrange, patient pain levels drop”. F!?$#:-?##!!!!! What the hell???? [HD: This is by no means a universal truth, but obviously I cannot speak to Aelxa’s experience.]
Now, in early 1997, shortly before being diagnosed with Hypothyroidism, I was diagnosed with Fibromyalgia and put on my first pain medication. At one point I was taking Nucynta 75mg Q3°, Tramadol 50mg Q3°, Methadone 10mg Q3°, plus Tizanidine 4mg TID, just yo keep my pain down to a roaring 8-9 pain level.
And all this time, right there in a Basic Endocrinology medical school textbook, it was taught if you get the T4 and T3 in midrange then pain levels drop.
Well, f**k me, I spent 23 years taking more and more pain medication to try to reducemy pain enough to get out of bed, when just getting my T4 and T3 in midrange would have helped my chronic pain more than ANY pain medication.
And every Endocrinology medical school graduate learns this in the first Endocrinology textbook they crack open. Instead, they focus on TSH, a pituitary gland secretion, and my pituitary gland does not even make enough HGH to keep me alive. Looking at my TSH is ……well, you can guess what I am not saying about TSH.
So, now my dear old endocrinologist who took me back, my Primary physician whom I love, and my fantastic Pain Management Specialist who is thrilled with my reducing pain levels, all could not care less what my TSH is…..the question is “are your T4 and T3 in midrange?” and “how is your pain level?”
It is now March 2020, and I am down to one half of a 75mg Nucynta BID, and I decide when I feel it is time to reduce the medication, my Pain Management specialist agrees with my self-assessment and then we reduce it for a month. So far I have never had to go up on my medication again, once I decide it is time to reduce.
My Pain Management Physician says I may never totally get off pain medication, but we will see. I have hopes to be able to get off and be completely painfree. I am allergic to aspirin and NSAIDS, so limited in what I can take, but compared to the huge toxic amounts I was on before, I am taking very little medication at all.
Meanwhile, endocrinologists need to learn more, or perhaps go back and re-read their Basic Endocrinology textbooks once more….and much,much more carefully. Look at T4 and T3 levels, instead of focusing on TSH. Especially, if your patient also has Chronic Pain.
Thank you for your mild comment, HD.
While nothing is a 100% universal truth, the fact that getting T4 and T3 into mid-range corresponds with decreased patient pain levels is enough of a common response that they have put it in a Introductory Basic Endocrinology medical textbook as being a fact. ……that says you can expect this to happen when you have a patient in pain.
My Pain Management physician, by the way he has yearly been rated my state’s top Pain Management Specialists for many, many, many years, was so intrigued, that he decided to test all his pain patients T4 and T3 levels.
Guess what he found? The patients with the worst pain levels also had the lowest T4 and T3 levels, many of them being well under the lowest “in-range” level.
He finally found a endocrinologist who is willing to work with these patients to get T4 and T3 into mid-range, while ignoring the TSH, and the closer to mid-range they get, the more pain levels drop and less pain medication is needed.
It may be that there is a sub-group of thyroid patients who have Chronic Pain Syndrome, who need to be kept in mid-range in order to reduce their pain, while ignoring the TSH level.
This would mean if these patients could be caught early, if the existance of this group was confirmed as a valid group and could be treated successfully with Thyroid medication, instead of opioid medications like Oxycontin, etc, which only mask pain and require increasing pain medication as the body acclimates over the years, then pain patients could live better lives not being drugged to the gills with opioids. And no longer be called “drug seeking” patients, while coping with outrageous levels of pain they are not responsible for.
It is very hard trying to cope with a daily constant pain level of 8-9, a constant pain worse than childbirth. I rate my worst pain at that time as being a 7 level for about two minutes during a completely drug-free birth. Imagine 23 years of pain worse than that, then to have physicians calling you “drug-seeking”, is sheer inhumane torture.
Being able to see the end of taking any pain medication, while have a tolerable daily 2-3 pain level….. is a damn miracle.
My studies on PubMed indicate the association of T3 levels in the brain, with adequate brain levels of serotonin and dopamine needed in reducing neurological response to pain signals, as being why getting T4 and T3 into mid-range reduces pain levels so well.
So, I am thankful my new endocrinologist fresh out of school said “you are older and supposed to have lower thyroid levels” and then took me off the Cytomel.
Doing this lead to the discovering that mid-range T4 and T3 reduces pain. Which lead me to go from taking 18 pills of three different narcotics and 3 muscle relaxant pills a day…..to now taking half a pill of one narcotic twice a day, plus 1/4 tablet of a muscle relaxant about once every two weeks PRN for spasms. And a pain level of 8-9 on the super cocktail, that is now down to 2-3 on a small amount of one pill a day total, is fantastic.
But I am never ever recommending that newbie endocrinologist to anyone. The idea that “you are older and are supposed to have low thyroid levels” is as valid as saying…. “you are older so you are supposed to have high blood sugars that will cause you to go blind”, and so not treat the high blood sugar.
At least in my book they are the same. Age should not mean you treat a patient as if their body’s malfunctioning, due to inaccurate cell replication over time and shortening telemeres, as being completely normal and should be allowed to destroy the patient’s body without medical intervention.
Whether the patient is 25 or 65 years old, you should be treating the patient’s low thyroid levels. At least that was what I was taught back in the teaching hospital I went to school at, back in the early 1970s.
Now the attitude seems to be, you are older and not working so please die sooner, and save us all time and money. I have younger working patients I would rather be treating, not someone with one foot in the grave.
That is the attitude new doctors exude today, to older patients like me. And all my friends complain of the same thing, wondering what happened to medical care and regular human decency.
First, I love your articles and sarcasm as I am very sarcastic. That said, I’m on my 5 endocrinologist and I make no bones about it – I hate endocrinology! I started with Graves Disease. No one said… you will lose insulin because of this. Oops! You didn’t need to know that! Then I had an a-hole endo. He wanted to know what it was like to have Graves Disease and when I told him I could look at my refrigerator 15 yards away but I didn’t have the strength to get up (also weighted arms and legs, fatigue, sweating and heart palpitations) he dismissed me as I know, I’ve read the books. When my Graves appeared to go in remission his kicker was… “Out of the frying pan and into the fire 🔥.” Pre diabetes. I loathed him! His smug and arrogant demeanor. I could have ripped his head off. I didn’t ask to have what I consider to be basically a woman’s disease. Diabetic? See my middle finger!
My first endocrinologist wanted to cut out my thyroid and gallbladder. Why my gallbladder? What for? Everyone in his offices was being scheduled for surgery. Red flag 🚩 My next endo retired, but he never mentioned losing insulin. I saw his replacement one time and never went back.
Now, my PCP wants me to go. Idk why. She’s threatened to cut me off Metformin. But I won’t get on the hamster wheel every 3 months, blood draw, keep doing what you’re doing routine. It’s AMA guidelines.
Ten or twenty year British studies have shown that long term use of Tapozole show no adverse side effects. No one told me this. My retired endo said you are my best read patient. I said I’m the patient – you’re not cutting my thyroid out and you’re not nuking it! It works – just not right.
After reading your stuff especially 10 questions for your endo (I laughed so hard), I will try to be nice but I haven’t seen this new female endo yet and she’s like 37 years old and I was already ready to rip her head off. Am I angry? You bet!
In my experience, endo’s do nothing but say come back in 3 months and let’s do this song 🎶 and dance again. I have insurance now but I didn’t then… as I told my pcp… they waste my time and money.
Maybe this one will be different but I won’t hold my breath. The moment she says 3 months… I will probably stop listening.
Thank you for your perspective. If nothing else, I feel like Dr Bruce Banner, outwardly I will try to be nice to her, even though inwardly, I am angry like the Hulk.
Hang in there, Jon, and thanks for reading and lending your perspective. And as a general comment about Graves and methimazole, I’ve treated plenty of people long-term with the drug. Some people just preferred to restart methimazole upon relapse, as opposed to doing radioactive iodine or surgery. And if they could remain stable on low-dose methimazole for years and years (which many of my patients could), that always seemed fine to me, given that there hasn’t been evidence (to my knowledge) of a high risk of any issues on the drug long-term.