Respectful Insolence

About a month ago, I wrote about a study that looked at metrics of patient satisfaction and compared them to hard outcomes often used to evaluate quality of care, including frequency of emergency room usage, frequency of hospitalization, and overall mortality. Even though these days there appears to be an implicit assumption that increased patient satisfaction comes about as a result of better quality of care (or at least that patient satisfaction correlates with quality of care), this study found almost exactly the opposite. Patients who were in the highest quartile for patient satisfaction based on their responses to the standardized survey actually had more hospitalizations and higher mortality than patients who fell into the lowest quartile based on the survey. True, the most satisfied patients used the emergency room slightly less than the least satisfied patients, but it was a very small difference, only 8% less. Overall, the results of the study were pretty strong evidence that patient satisfaction does not necessarily correlate with quality of care.

The other day, I noticed an op-ed in the New York Times by an oncology nurse named Theresa Brown. Her article, was titled, appropriately enough, Hospitals Aren’t Hotels. It will become very apparent very quickly why she chose that title in a moment, as it will become even more apparent why I chose this article as a jumping-off point to revisit the issue of patient satisfaction versus quality of care. But first, let’s sample Brown’s article a bit, because it brings up an issue that is very pertinent to science-based medicine.”

“You should never do this procedure without pain medicine,” the senior surgeon told a resident. “This is one of the most painful things we do.”

She wasn’t scolding, just firm, and she was telling the truth. The patient needed pleurodesis, a treatment that involves abrading the lining of the lungs in an attempt to stop fluid from collecting there. A tube inserted between the two layers of protective lung tissue drains the liquid, and then an irritant is slowly injected back into the tube. The tissue becomes inflamed and sticks together, the idea being that fluid cannot accumulate where there’s no space.

I have watched patients go through pleurodesis, and even with pain medication, they suffer. We injure them in this controlled, short-term way to prevent long-term recurrence of a much more serious problem: fluid around the lungs makes it very hard to breathe.

A lot of what we do in medicine, and especially in modern hospital care, adheres to this same formulation. We hurt people because it’s the only way we know to make them better. This is the nature of our work, which is why the growing focus on measuring “patient satisfaction” as a way to judge the quality of a hospital’s care is worrisomely off the mark.

As a surgical resident, I rotated on the thoracic surgery service on multiple occasions over the course of my five clinical years. As part of my duties on that service, I’d see all the chest tube and pleurodesis consults, put in most, if not all, of the chest tubes, and do most of the pleurodesis procedures, at first supervised by the cardiothoracic fellow and then on my own. They’re not difficult procedures (I had learned to insert chest tubes when I was an intern on the trauma service) and learning to do pleurodesis wasn’t difficult either. I’m not sure if pleurodesis is the most painful procedure I did, but it certainly wasn’t pleasant. Think of the procedure this way: The goal of the procedure is to suck out all of the pleural effusion (a collection of fluid surrounding the lung) and then to get the pleura lining the lung to stick to the pleura lining the inside of the chest wall by, in essence, “roughing them up” so that they become very inflamed and stick together when they heal. The “irritant” (as Brown puts it) that we used to use was nothing more fancy than a slurry of sterile talc, although there are other irritants that can be used, such as bleomycin, tetracycline, povidone iodine.

The point, of course, is that we as doctors sometimes have to be, as Nick Lowe once put it, “cruel to be kind in the right measure.” As a surgeon, I’m acutely aware of this necessity. Surgery hurts. There’s just no way to get around it. The best we can do is to try to minimize the pain we cause by slicing people open and forcibly rearranging or removing parts of their anatomy for (hopefully) therapeutic intent; we can’t eliminate the pain. But even surgery isn’t the worst that we as physicians inflict upon patients in the name of trying to heal them. For examples, my colleagues in medical oncology administer highly toxic chemicals to patients, chemicals that make their hair fall out, temporarily weaken their immune systems, rendering them susceptible to life-threatening infections, cause neuropathy, and produce all sorts of other adverse effects. Think of bone marrow transplants with stem cell rescue. It’s a procedure in which doctors literally destroy the patient’s existing bone marrow (and thus the vast majority of his immune system) and then reconstitute it using either the patient’s own hematopoietic stem cells or marrow obtained from a donor. It’s unpleasant, takes weeks, and puts the patient at risk for death from the procedure and, in the case when the marrow used is from a donor instead of the patient, puts the patient at risk for graft versus host disease.

We as physicians don’t do these things to patients because we like to cause suffering. We do them because what science tells us about the diseases being treated also tells us that these are the sorts of things we have to do to save the lives of patients with serious diseases. In the case of cancer, for instance, gentler interventions just don’t work as well. Contrary to how some quackery propagandists like to portray physicians, we don’t do these things because we get off on it. We do them because the benefits outweigh the risks, and because we can save lives. Meanwhile, we are continually doing research to find treatments that are more efficacious, as well as less risky and unpleasant. It might well be that doctors in the far future will recoil in horror at our current treatments, much the way Dr. McCoy did when he encountered dialysis and chemotherapy, but they’re the best that we have now, and we are working to improve them.

Brown is correct when she points out that these days patient satisfaction is becoming more and more important in judging how well hospitals and physicians are doing. She also points out that by October 2012–yes, this year–Medicare reimbursements will be linked in part to a patient satisfaction survey administered by the government known as the Hospital Consumer Assessment of Healthcare Providers and Systems survey. While the survey itself, as Brown also points out, measures aspects of health care that are important, such as communication between the physicians, nurses, and staff and the patient, how well the patient was educated about his condition, and how clear discharge instructions were, note the underlying assumption behind such surveys is that patient satisfaction correlates with high quality care, But is that true? Brown has her doubts, as do I:

These are important questions. But implied in the proposal is a troubling misapprehension of how unpleasant a lot of actual health care is. The survey measures the “patient experience of care” to generate information important to “consumers.” Put colloquially, it evaluates hospital patients’ level of satisfaction.

The problem with this metric is that a lot of hospital care is, like pleurodesis, invasive, painful and even dehumanizing. Surgery leaves incisional pain as well as internal hurts from the removal of a gallbladder or tumor, or the repair of a broken bone. Chemotherapy weakens the immune system. We might like to say it shouldn’t be, but physical pain, and its concomitant emotional suffering, tend to be inseparable from standard care.

Certainly, good communication, for instance, is essential to patient care and it’s not unreasonable to think that good communication will tend to lead to more satisfied patients. Brown points out that it “ain’t necessarily so” that these sorts of metrics correlate with outcomes. Her article also made me think again about the study I discussed a month ago. So I went back and reread it. More importantly, I actually read the accompanying editorial by Dr. Brenda Sirovich, which is something I should have done the first time around. Combining Brown’s article with the editorial by Dr. Sirovich helped me put results like that of this study into more perspective. Dr. Sirovich, for example, points out that we seem to be moving in health care towards a philosophy more appropriate for retail, namely that the “customer is always right.” Of course, as admirable (and, of course, profitable) as such a philosphy might be in retail and sales, sometimes even in retail the customer isn’t always right. It’s just that retailers and other business people have to try to pretend that he is. In medicine, we have a higher calling than simply to try to “keep the customer satisfied.” We are charged with actually trying to make them better, but, as this study, Dr. Sirovich’s editorial, and Theresa Brown’s op-ed show, the goal of patient satisfaction often conflicts with the goal of providing excellent care. As Brown points out:

The problem with this metric [patient satisfaction] is that a lot of hospital care is, like pleurodesis, invasive, painful and even dehumanizing. Surgery leaves incisional pain as well as internal hurts from the removal of a gallbladder or tumor, or the repair of a broken bone. Chemotherapy weakens the immune system. We might like to say it shouldn’t be, but physical pain, and its concomitant emotional suffering, tend to be inseparable from standard care.

We as practitioners can try to minimize this aspect of care, but, alas, we can’t eliminate it. We also can’t eliminate what care all too often requires, namely honesty and an evaluation based on science. Brown tells the tale of an octogenarian referred to her hospital with a “newly diagnosed blood cancer, along with a promise from the referring hospital that we could make him well.” Brown recounts his devastation and, yes, dissatisfaction when a medical oncology fellow told him that he was too old to tolerate the chemotherapy, leading Brown to observe:

The final questions on the survey ask patients to rate the hospital on a scale from worst to best, and whether they would recommend the hospital to family and friends. How would my octogenarian patient have answered? A physician in our hospital had just told him that he would die sooner than expected. Did that make us the best hospital he’d ever been in, or the worst?

Hospitals are not hotels, and although hospital patients may in some ways be informed consumers, they’re predominantly sick, needy people, depending on us, the nurses and doctors, to get them through a very tough physical time. They do not come to us for vacation, but because they need the specialized, often painful help that only we can provide. Sadly, sometimes we cannot give them the kind of help they need.

Related to this observation, Dr. Sirovich notes that patients very much like early detection and aggressive intervention, even when that early detection and intervention might not necessarily be helping them. As an example, she tells the story of “A Healthy Man’s Nightmare,” which was an article published in the New Yorker recounting how literature professor Joseph Epstein went from thinking himself healthy at age 60 to surviving a coronary artery bypass surgery. It all started based on a “routine” physical that revealed a low high density lipoprotein cholesterol level, which in turn led directly to a stress test, which in turn led to…well, you get the idea. The result was that Epstein, at 62, considers himself “weakened, with a lasting sense of vulnerability that he eloquently labels ‘heart-consciousness.’” Did aggressive screening help or harm Epstein? It’s not clear. Regardless, Epstein considers himself “lucky” and attributes his good fortune to his physicians, whom he describes as “paragons of excellence.” This anecdote leads Dr. Sirovich to speculate:

Regardless of whether one believes Mr Epstein to have been ultimately helped or harmed by his screening stress test, his satisfaction with the experience should perhaps not be as surprising as I initially found it. Satisfaction with seemingly adverse outcomes of potentially excessive medical care appears to be the norm. Numerous studies have found that patients are consistently highly satisfied with one of the most common downsides of medical care– false-positive test results and the downstream events that follow.5,6 Moreover, such patients are more likely to undergo the same (and likely other) testing in the future, dismissing their anxiety and other adverse effects as a negligible price for a good outcome.

In other words, many, if not most, patients tend to like aggressive intervention, and they tend not to like “watchful waiting.” They want to do something. That’s part of what’s driving the whole controversy over screening, be it screening for cancer, heart disease, or any of the other conditions we routinely screen for. Screening is a complex equation in which balancing risks and benefits is anything but simple. Overaggressive screening can lead to overdiagnosis and overtreatment whose harm outweighs the benefit in terms of lives saved by early detection and intervention. Moreover, the pressure isn’t just from the patient or on the patient. There are what Sirovich refers to as “positive feedback loops” that pressure doctors, too:

The same heuristic operates on the physician. Ransohoff et al7 proposed, a decade ago, that prostatespecific antigen (PSA) screening for prostate cancer exemplifies a system without negative feedback. Regardless of the true net effect (beneficial or harmful) of screening, a physician ordering a screening PSA receives a favorable result: he can reassure the patient with a normal PSA result; celebrate with the patient who has overcome a false positive; or (most compelling for the physician) offer potentially life-saving treatment to the patient whose prostate cancer was “caught early”– notwithstanding the likelihood that the patient’s outcome may be worse because of early detection. Regardless, the physician can feel satisfied, and more certain that ordering the next screening PSA will be the right decision, which will then appear to be the case, and so on.

Positive feedback systems abound in health care, for both physicians and patients. Diagnostically, almost any unnecessary, or discretionary, test (particularly imaging) has a good chance of detecting an abnormality. Acting on that abnormality has an excellent chance of producing a favorable outcome (because a good outcome was already highly likely). Having obtained an excellent outcome, ostensibly owing to a test that was seemingly unnecessary, a natural reaction would be thereafter to perform (or, for patients, undergo) even more discretionary testing in patients with an increasingly negligible likelihood of benefit–and greater risk of net harm.

So, on both sides of the equation, the patient’s and the physician’s, there are many apparent rewards for delivering more care and few disincentives for doing so, at least on the level of the individual patient. It takes outcomes research and randomized studies to determine whether providing “more” care actually does what it is intended to do, how likely it is to benefit each patient, and how likely it is to harm each patient. Sirovich notes that she still thinks there’s an unidentified confounder in this study, given that the excess mortality far exceeded the excess rate of emergency room utilization in the most “satisifed” quartile, but she also points out that this result is plausible, based on what we know already. I agree, which leads me to a bit of a stray thought that I’d like to conclude on and provide as a lead-in for discussion in the comments.

That stray thought is that maybe the popularity of CAM is arising from this same impulse, both on the part of physicians and the part of patients. For example, patients, faced with conditions for which standard science-based medicine has little to offer–or for which what SBM offers is too unpleasant and brutal–still want to do something. So they seek out remedies and treatment modalities that promise to do something for them with much less invasiveness, less “impersonal” dealings with the health care system, and less pain. Physicians, on the other hand, faced with patients for whom what SBM has to offer is seemingly unsatisfactory, still want to do something. Well, CAM is something, and, for those doctors who are not as scientifically inclined as we are and who also aren’t as aware of the cognitive tricks that lead us to incorrectly infer causation from placebo effects, observer bias, confirmation bias, and correlation, dabbling in CAM will rapidly lead to apparently “positive” results, much as doing “unnecessary tests” does. Once that happens, the tendency is do recommend even more CAM to patients. Before too long, the more credulous can turn into Andrew Weil or Mark Hyman. The more average just look the other way and sometimes refer patients with recalcitrant to acupuncturists or chiropractors. Uncommon is the doctor who avoids becoming at least a shruggie.

Leaving CAM aside, though, Brown is right. Hospitals are not hotels, and a philosophy designed for department stores is not the appropriate for medicine. While it is in general (mostly) a good thing that we are getting away from the paternalism and “doctor knows best” attitude that predominated even as recently as when I was in medical school and moving towards a much more collaborative model of the doctor-patient relationship, there is risk and a price to that model. The potential price is the probability that “giving the people what they want” is not the same thing as giving patients what they need. I think the Rolling Stones had a very good line to describe the essence of the diverging goals of patient satisfaction and patient care.

Comments

  1. #1 me535
    March 19, 2012

    Please write an article about:

    http://www.acancer.info/

    Thanks!

  2. #2 prn
    March 19, 2012

    The problem here is, in an era of increased centralization, monolithic answers and coercive finances, how does a patient who has spent the time to make intelligent, informed decisions enable those choices?

    To many, an unhearing hospital can be more like Hotel…
    where you may never check out…alive. I figure for one [ attempted] major mistake per day and current, seemingly unorthodox answers, can mean the difference between out door with fast recovery and sticking around for the iatrogenic late show.

  3. #3 Sami
    March 19, 2012

    Three months ago, I was hospitalised and underwent surgery – an ORIF to screw together the broken bones of my unstable ankle fracture. It was miserable and painful. Despite the fact that the hospital was somewhat overloaded – this was just after Christmas, when most of the private hospitals have closed off most of their wards and it’s the rush season for people having accidents much like mine – the quality of care I received was unquestionably excellent.

    However, if someone had asked me how “satisfied” I was at the point of discharge, I would have said I was thrilled to be leaving, but the five days I’d spent in hospital had felt like an eternity and the nurses were clearly far too busy and overworked because I’d often had to wait a really long time for their attention when I pressed the call button and the whole experience had been miserable. And also the other patients in my room had been *really annoying* a lot of the time.

    With time, I have some perspective, and I’d actually say I *am* satisfied with the care I received, but the thing is, having to go through medical stuff is pretty much guaranteed to put you in a thoroughly bad mood.

    I didn’t even have *that* bad an experience – orthopaedic surgery is painful, but the five different kinds of painkillers I was kept dosed with kept the pain in check almost all the time, and I was in no doubt that I would be out of hospital in a relatively short period of time and that my recovery could be expected to be straightforward.

    At the same time, another patient in my room complained endlessly, contending that the doctors and nurses were denying her pain medication because she wasn’t rich and famous. (Not to stereotype or anything, but she *did* have an American accent.) She was clearly, obviously wrong – she was getting loaded with pain medicine even more heavily than I was, and multiple nurses and two ward doctors tried to explain to her that she couldn’t have more because it would be dangerous for her health – but she would have rated the hospital terribly on “satisfaction” *because* they maintained too high a standard of care to let her overdose.

    Tomorrow I’m going back to the hospital to have one of the screws removed from my ankle. I expect an excellent standard of care. I also expect to be at points bored, annoyed, in pain, and unhappy. It’s medical treatment, not a fun park.

  4. #4 captainahags
    March 19, 2012

    Prn, if by “intelligent, informed decisions,” you mean that a patient desires care that will in fact be either completely ineffective or worse, detrimental to the patient’s health, then I think a hospital would be right in not enabling those decisions. Too often people think that Google University trumps the years of experience and training that medical professionals have acquired, and the results are not pretty. And I would love to see some examples of “seemingly unorthodox answers” that have consistently produced better results than the care hospitals have to offer.

  5. #5 Krebiozen
    March 19, 2012

    CAM as a displacement activity seems like a good model to me. Though keeping busy with the juicer, the coffee percolator and the enema bag didn’t seem to improve the quality of life of Gonzalez’s patients, as I recall

  6. #6 fusilier
    March 19, 2012

    1978-79, I had bacterial pericarditis. (Misdiagnosed for months as “stress-related” since I’d just started in a new lab.) Breathing was so painful that I was cyanotic most of the time.

    Yeah, I’d say this procedure could be one of the most painful a doc might pursue.

    fusilier

    James 2:24

  7. #7 Elaine Schattner, MD
    March 19, 2012

    Nice musical reference, Orac, which leads to the issue of people getting (or not) what they need.

  8. #8 Baxter Zappa
    March 19, 2012

    I have often compared hospitals and hotels. You can get one heck of a lot of comfort and care and rest in a hotel for $1000 / night compared to $1500-$3000 per night in the hospital. Room service, massage, trainer/physical therapist… I wonder which, on average, would produce healthier outcomes. Probably less MRSA and pneumonia in the fancy hotel…

  9. #9 palindrom
    March 19, 2012

    Sicker patients are more likely to die, and — one hopes! — are also likely to get more attention from the hospital staff.

    More attention very likely leads to higher patient satisfaction numbers.

    Could this account for the mortality/satisfaction correlation?

    How about this design: Get a sample of patients that match as closely as possible for age, general condition, diagnosis, etc. — and then study how different hospitals stack up treating patients from this group. Would there still be a positive correlation between patient satisfaction and bad outcomes?

  10. #10 Mephistopheles O'Brien
    March 19, 2012

    @Baxter Zappa,
    “Probably less MRSA and pneumonia in the fancy hotel…” Probably, as generally sick people don’t travel to fancy hotels (they may get sick after they get there). On the other hand, there have been cases of Legionnaires’ Disease at fancy hotels, so there’s no guarantee on that score.
    There’s also nobody (at least, not included in the price) to provide one with pain killers, ensure you’re hydrated, empty bedpans, etc. at the hotel. Hotels also get irate about you spilling excessive bodily fluids on the furniture, which hospitals take in stride.

  11. #11 Dianne
    March 19, 2012

    Probably less MRSA and pneumonia in the fancy hotel…

    Tell it to everyone who got SARS from staying in a fancy hotel in Hong Kong. Also, there are fewer people who know how to intubate and defibrillate in a fancy hotel. But by all means, feel free to go to a fancy hotel instead of an ER when you have chest pain. Your heirs can tell us how it worked out for you.

  12. #12 Denice Walter
    March 19, 2012

    Oo.. someone turning into Weil or Hyman- what a horrible thought!

    *Wanting to do something* of course, includes relieving suffering both physical and emotional: however CAM may jump ship by making promises it can’t deliver to ease terrified patients’ minds while simultaneously silencing their own feelings of helplessness.

    Alt med woo takes advantage of the differential in sufferers’ coping skills: those who can’t deal with fear or tolerate pain may be prime candidates for the hard sell. It comes as no surprise that woo-meisters’ endless rants about SBM focus on difficult procedures: diagnosis of a serious illness forces people to tolerate a regime that will aid them. Today Mike Adams ( @ NaturalNews) screams about a family forced by the state to treat their child’s cancer by chemotherapy ( -btw- it’s in Michigan where Orac’s friend, the Doctor, is located).

    Which leads me to my own disturbing question: do woo-meisters ( including anti-vaxxers) unfairly target people who are less able to cope with difficult situations? Cultivating a caring persona while depicting SB doctors as monstrously and deviantly cruel is a predominant theme that rivals *money-hungry & greedy* in frequency.

  13. #13 l bank
    March 19, 2012

    There is so much talk about patient satisfaction versus outcomes. But, no one has ever defined patient satisfaction!

    The study everyone is referring to lately is satisfaction with a managed care plan. How hard is it to realize the higher the utilization the higher one is satisfied, especially because when you think you are more ill than the next guy (What about preventive care!)…So, access to more care if you are ill is a good thing. And if you are ill, you are more likely to have more complications and a higher mortality than those who aren’t. That study does not relate to a hospital experience, a health crisis,chronic ilness or pain.

    What is the health care “experience?” What makes it a good one? What has that to do with satisfaction? The government and commercial vendors ask questions about particular aspects of a hospital stay: communication; environment; emotional needs; pain management; medications; and more. Then a high mean score for commercial surveys, or a high percent of the answer “always” for CAHPS surveys is supposed to mean high satisfaction or a great experience.

    These surveys are certainly measuring something, but I’m not sure what, other than the particular questions on the survey. Add to this the cultural influences on health, illness and healing, we just have report cards on the goings-on in hospitals that imply one size fits all.

    Hooray! Patients now have a voice, but apparently very few consumers ever check out hospitalcompare.gov to see how their own hospital ranks. Maybe the questions asked on the survey aren’t the ones that really matter to consumers.

    I’ve worked in hospitals for 44 years, and I’ve met patients who could only be satisfied if we could hasten their dying because the intractable suffering was too horrible to bear.

    How would you measure that outcome?

  14. #14 prn
    March 19, 2012

    captainahags@2
    While I can sympathize that doctors may feel frustrated over frequent patients with fluffy education and ideas, medicine is not nearly as pat, effective, efficient or “scientific” as being portrayed to the masses.

    The intractable problems are of such magnitude, many have begun to question their previous faith or silence. Many have begun to attempt to exercise rational choice and the first part will likely be the most difficult.

    Even those whose educations have relevant special strengths can have great difficulty overcoming entrenched, palpable medical failure modes despite serious investigation, multiple conventional consultations, and finally presentation of peer reviewed literature of direct interest.

    There different patient segments. Perhaps some groups are better and some are worse at correlatable outcomes. Without some consideration of patient satisfaction in funding and choice, many consumer hazards become hard to avoid.

  15. #15 Denice Walter
    March 19, 2012

    MRSA! Well, hospitals are extremely dangerous places. Or so I’ve been told.
    A well-known woo-meister has outlined his own protocol to eliminate MRSA *naturally* ( without toxins):
    surfaces should be cleaned with hydrogen peroxide and colloidal silver solution
    ozone is useful for dis-infection of instruments et al
    patients get high dose vitamin C**

    I’m surprised he didn’t suggest scheduled group meditation involving pure thoughts!

    ** I swear, as the universe is my witness, I’m NOT making this up- as I’ve stated, fiction’s not my forte.

  16. #16 lilady
    March 19, 2012

    “Room service, massage, trainer/physical therapist… I wonder which, on average, would produce healthier outcomes. Probably less MRSA and pneumonia in the fancy hotel…”

    You do know that a trainer who has no education in body mechanics and a physical therapist who has a minimum of 5 years undergrad education are worlds apart, don’t you? You are far more likely to acquire CA-MRSA when you have a session with a “trainer”.

    http://www.csmfoundation.org/Community-Acquired_20MRSA_201104.pdf

    Make certain that the massage therapist works on your pesky calf pain, as well:

    https://physsportsmed.org/doi/10.3810/psm.2010.12.1836

  17. #17 James Sweet
    March 19, 2012

    Only comment I have on this is that “patient satisfaction” does not necessarily have to correlate with positive outcomes for us to care about it; it is a valid aim in and of itself. The only question is how we choose to weight it. Palliative care is an extreme example, but even with healthy people, some level of increased risk may be tolerated for an improved patient experience (if you disagree with this, then why do we allow people to ski? After all, it’s an increased risk in exchange for an improved experience, isn’t it?).

    Nevertheless, it is very important information to recognize that there is not a synergistic effect between positive objective outcomes and patient satisfaction, and that there may even be a negative correlation. That really does a lot, I think, to inform how the various measures ought to be weighted. Weighting patient satisfaction too highly will not just lead to sub-optimal policies; it will lead directly to worse objective outcomes.

  18. #18 Pliny the in Between
    March 19, 2012

    This is a big reason we are using metrics that we call, “health and therapeutic advocacy metrics”, in our research instead of satisfaction surveys. The metrics are geared toward education, communication, and compliance rather than hotel functions. Comfort with the process rather than with individual elements of therapy is what we are trying to assess. It will be interesting to see if this helps shift the emphasis.

  19. #19 Calli Arcale
    March 19, 2012

    Hospitals are not hotels

    Heh. Tell that to my grandmother. She’s generally a very unpleasant patient. My grandfather sends flowers to the nursing station after she is discharged, to thank them for putting up with her. She treats them like hotel staff, at her beck and call, rather than like nurses with other patients with far more serious issues to attend to.

    I think the simplest way to highlight the problem with patient satisfaction surveys is to note that even the worst quacks get good patient satisfaction reports. The things you can do to make a patient happy are, at best, largely unrelated to the quality of their care. At worst, they can *replace* the quality of care. I’m all for improving the “patient experience” since it *is* important to make the patients as comfortable as is practical. But this cannot be at the expense of their actual care, and we must be cautious not to jack up price to cover amenities.

  20. #20 Autismum
    March 19, 2012

    There are similar issues going on in the NHS right now. However the coalition government seem to equate meaningless choice with improved patient satisfaction and aren’t factoring quality or consistency in care standards: some hospitals may be crap but at least a patient can choose to travel hundreds of miles to one that isn’t if they can survive the journey. Although the plans now have been somewhat watered down there is still a chink in the door to let quacks get their hands on NHS money:http://www.nerditorial.com/featuredarticles/cameron-wont-privatise-the-nhs-honestly.html

  21. #21 dusonfnp
    March 19, 2012

    In 15 years of being a staff RN on pediatrics, one of the most frequent comments I heard was that “I couldn’t do what you do, I couldn’t hurt the kids.” It was interesting, trying to figure out of the commenter was being complimentary or thought we were cold-hearted people. Starting on IV on a little one isn’t fun for anyone, but it is pretty satisfying for parents to see how quickly they recover; and we do use all kinds of comfort measures and positioning to decrease their pain and anxiety.

    But this is really just an excuse to comment on an old post of Orac’s about his wonderful corn-eating dog. My family and I just lost our beloved beagle to cancer and infection, and I wanted to say how much Orac’s writing about his dog meant to me. Sorry for the off-topic commentary, but Thank You!

  22. #22 palindrom
    March 19, 2012

    dusonfnp @20 — I went and googled Orac’s posts about his dog Echo, and I just finished wiping away the tears.

  23. #23 Tom Herling
    March 19, 2012

    “hospitals and hotels… I wonder which, on average, would produce healthier outcomes.”

    If, while staying at such a hotel, you should suffer let’s say, a heart attack, they’d likely put you in an ambulance and take you to…a hospital.

  24. #24 Sami
    March 19, 2012

    @Baxter Zapper: So, room service – well, I got meals delivered to my bed in hospital. But the massage and so on that you say fancy hotels would provide – how exactly do you suppose that would help me, with my leg broken in three places, better than the hospital and their surgeons did?

    Do, please, enlighten me. In fact, I would love any “alternative medicine” or similar advocate to explain to me how another “therapeutic modality” could have served me better than those evil people at the hospital giving me drugs and omg ~cutting me open~.

    Conditions: Broken tibia and fibula, just above the ankle, second break in fibula just below the knee. Treatment I received was surgery, inserting three titanium screws to hold the bones in place, short course of IV antibiotics, heavy-duty painkillers (oxycodone, ibuprofen, paracetemol, etc) tapering off ass healing progressed.

  25. #25 Autismum
    March 19, 2012

    #20
    @dusonfnp
    Losing a pet is so sad. Our amazing cat is very poorly and I’m having a hard time thinking he might not make it. Hugs xx

  26. #26 Mark M
    March 19, 2012

    “Many have begun to attempt to exercise rational choice…”

    …by refusing beneficial treatments in favour of camel’s milk and crystals?

    Attempt harder.

    (And stop sounding like you’re about to start telling us about Scientology or something. If you have an actual point, make it.)

  27. #27 TGAP.Dad
    March 19, 2012

    I have a LOT to say on this, though I’ll try to keep my remarks reasonable. I have had several surgeries in my life, and most of the time, was unexpectedly put off by the patient management. Most recently, I had a mastoidectomy to respect a cholesteatoma. I was tols I would likely be out of work for the four remaining days of the week, returning the following Monday. Other than that I was given no expectations regarding surgical outcomes, effects, or impacts on my daily lifestyle. The magnitude of this began to reveal itself shortly after regaining consciousness. There was a protective cup over my ear, like half a wrestlers headgear, and a strap tightly wrapped around my forehead. Though I complained about the pain it caused, not one person seemed to think it worth investigating. Upon removal the next day, it was apparent that the pain had manifested itself in the form of a golf ball-sized painful welt where the adhesive had secured it to my forehead. Neither the surgeon nor anyone else even offered so much as an apology. The protective cup prevented me from wearing my glasses, which correct my 20/800 vision. No glasses=large headache. Again, no one prepared me for this obstacle. I eventually gerry-rigged an old pair by removing one temple and replacing it with a string of rubber bands. I had a painful, inch-long abrasion on my gums, doubtless from insertion of the tube. Again: no apology, explanation, or preparation. I had a small nick of burn on my outer ear which bled freely when the scab rubbed off (frequently). I was not told that I would be forbidden to blow or sniff my nose. During peak sinus season in the Great Lakes region. For nearly four weeks I had to out up with sinus congestion which compromised my ability to breathe, because no one prepared me for this either. I was also forbidden to use my CPAP for those same three weeks. Wanna guess how my sleep went, in an office-style chair for those three weeks?

    Now I ask you, Orac. How should I rate this experience as a patient? Should I return to this surgeon/hospital again? Would it change your mind if he’s in the only ENT practice in this area? By any strictly reasonable metric based solely on medical criteria, this was a good outcome. The hospital and surgeon managed the condition very well. They totally sucked at managing the patient.

    Keep in mind, I have more stories as bad as this one. Billing/office management issues. Medical incompetence, by a lead doctor in his particular practice. Insurance fraud, I’ve seen that, too.

    So what are we non-medical people supposed to do? O what, exactly, should we base our selection of primary care doctors and specialists & surgeons? Are there any actual metrics in existence which would provide a reasonable lay person information enough to choose? Should I base it on a personal recommendation from someone who is probably no more medically knowledgeable than me?

  28. #28 Sami
    March 19, 2012

    I’m due at the hospital in two hours for some minor surgery to remove one of the screws in my ankle. (It goes between the fibula and tibula, to hold the fibula in place while both breaks in that bone healed along with the membrane between bones, which was torn.)

    I’m a little nervous about it, so I’d actually be quite eager to hear what alternative medicine would have been a better option than this.

    Any bets on the odds that alt-med advocates or practitioners are actually going to have suggestions of any kind for something as quantifiable and predictable as broken bones?

  29. #29 Rose-Marie Drake
    March 19, 2012

    @7 Baxter Zappa- So when you are in a life-threatening situation, you’ve just been run over, your back is fractured, you have massive internal bleeding, are you going to say “take me to a hotel,I need room service and a massage”. Of course you aren’t. You are going to be thankful that there will be a well-equipped facility available, staffed with folks who have dedicated years of their life to help YOU. I was in the hospital for 45 days, and yeah I crabbed because the staff called me “Mrs.” instead of “Ms.” and the food sucked, ya da ya da ya da. But you know what? They saved my life.

  30. #30 lilady
    March 19, 2012

    @ Sami: I’m certain you will weather this mini-procedure well. Come back and tell us how you are doing.

  31. #31 prn
    March 19, 2012

    MM@25, about my #13
    The point is that people are dissatisfied with results and costs as well as the hotel functions, and suspect that something important has been left out. So they are starting to try to vote in the marketplace themselves, against many obstacles. Obstacles including their own education (e.g. lack thereof or bias), which may divert them into less effective modalities, rather than more advanced, more successful treatments. Hard to cover whole fields with a single specific treatment.

    There will be hits and misses as new offerings evolve, hopefully offers that converge with demand for cheaper, less toxic, more effective treatments. I’ve adopted a biomarkers and targets based chemotherapy with many “natural” components that everyone says is doing remarkably well since nobody died or ever got chemo sick. Very similar to those materials and methods advocated at Ben Williams’ Virtual Trials website.

    However, longer life and multiple surgeries to achieve a surgically based cure may be necessary over the current chemo algorithm. Sorry for the extra work load, Orac, although our surgeons seem happy.

  32. #32 lilady
    March 19, 2012

    @prn: What does the link you provided have to do with the discussion at hand. Why would anyone want to buy the book that is being hawked there and why would anyone take the advice of Al Musella, a podiatrist, when it comes to treating cancer?

  33. #33 prn
    March 20, 2012

    LL@31
    what does…?I answered Mark M’s question in @25.
    Frankly, I never paid any mind to the book, I pretty much automatically screen out paid links and ads. The four more prominent free links below the book link contain a large amount of useful material about personalized treatment and experimentation, both specifically for glioblastoma and and generally for people with an advanced cancer diagnosis.

    As for Musella, denigrating cancer patients’ family member who sets up a cancer fighting foundation and website because of their profession is stooping toward the “heckle, hoot and holler rather than to analyze” behavior pointed out to you last month.

    I also might point out that personal personalization has a lot of upside potential for satisfaction and improved quality of care with some patients.

  34. #34 lilady
    March 20, 2012

    @prn: And…you still have not provided any information, aside from your snide remarks about doctors and the health care system.

    You really are able to link to a website…so why when we ask for citations, do you not provide those links? I suspect you realize that linking to your favorite websites, would result in our reviewing and dissecting the articles and studies that you are so enamored with.

    I read Ben Williams diary and how he “experimented” with various prescribed medications (he’s a psychologist, not an MD…I wonder where he got those medications?), following traditional treatment for brain cancer. He takes a boatload of “vitamins” and “neutraceuticals”. His diary is footnoted with various studies…some of them quite old and he includes alternative medicine citations.

    I’m still not impressed with Ben Williams “treatment” and totally unimpressed with his alternative medicine book.

  35. #35 prn
    March 20, 2012

    Williams was a full professor in experimental psychology at UCSD, a pretty good school. So he would know plenty of intelligent people, have lots of experimental experience with little animals, and have plenty of signatures and access for what ever he decided he needed.

    His is a remarkable story of personalized medicine and scientific survival at n=1. He would probably be politely even less impressed with you, if he cared. He’s talking to people more like me.

    Good luck if you ever get hopelessly ill where every MD gives up or wants to place time or result based bets for the boxed result.

  36. #36 anMDinNC
    March 20, 2012

    Driving though my state of NC last summer on the way to the beach, we went through 10 or so different counties. In each were several billboards, touting the local hospital as being “Among America Top 100″ for such-and-such as determined by such-and-such corporation. Print being smaller with each subsequent line. Some of these hospitals had only 35 medical beds. I guess any hospital can produce surveys to get any results they want, just for marketing purposes.

    In my own hospital, our department meeting are sometimes invaded by Administration, none too pleased with our many “Very Good” ratings by patients and not enough “Excellent”. They then literally try to coach us on ways to convince patients to give us “Excellent” marks, even how to choose the “right” patients to survey. Press Ganey also gives us information on how to improve scores (creating demand for their services, a cynic would say).

    So from my perspective as an MD in the trenches, it seems that these surveys rate how well hospitals convince patients to give “Excellent” answers, and not much else.

    Still, medical care is only part of the hospital experience. Most people assume that they will be getting competent medical care. It is perfectly reasonable also to want convenient parking, helpful/civil employees, good food, and clean facilities.

  37. #37 Sami
    March 20, 2012

    @lilady: I can now confirm that I have, indeed, weathered my minor surgical procedure just fine.

    From where I’m sitting – which is currently at home, in no pain because the local anaesthetic still hasn’t worn off, but having WALKED for the first time in three months tonight – that evil empire of science-based medicine is looking pretty damn satisfactory.

    I know of no category of CAM that could have achieved this one outcome ever – I can walk. My once-shattered bones are whole and I can walk, and there’s no crystals or special diets or mystical hand-waving or happy thoughts that could have made that happen.

  38. #38 Shay
    March 20, 2012

    I also might point out that personal personalization has a lot of upside potential for satisfaction and improved quality of care with some patients.

    I thought I’d left that kind of jargon behind after I graduated from business school. It’s a string of buzzwords that have nothing to do with providing medical care and everything to do with giving the patient a warm fuzzy.

  39. #39 Stu
    March 20, 2012

    Sami, are you seriously saying you aren’t using good, natural Chinese medicine?!

  40. #40 Denice Walter
    March 20, 2012

    @ Sami:

    Glad to hear of your improvements. Even deeply entrenched alt med supporters reluctantly credit emergency medicine- I mean, they’re not so mad to argue against the awesome capacity of re-starting a stopped heart or re-attaching a severed limb. I know a young tennis expert who is jubilant about his recent cleft palate/ “hare-lip” surgery while a college student: he emigrated from eastern Europe where these surgeries were not routine for children. He now dates someone: while his problem didn’t interfere with his academic endeavors and fierce racquetry, it hurt him socially, he’s told me.

    Here’s what’s truly hilarious: woo-meisters simultaneously deride SBM but congratulate emergency medicine ( and high tech interventions) as though the two disciplines were inexorably distinct and held mutually inviolate by a high wall of demarcation- never sharing information or technology! Oh, come on, now! What’ll they dream up next? Cancer and SMI can be cured nutritonally?… oh, they’ve already done that!

  41. #41 Shay
    March 20, 2012

    woo-meisters simultaneously deride SBM but congratulate emergency medicine

    Denice — and yet, some alleged health care professional has convinced the United States Air Force that acupuncture is a legitimate battlefield medical option.

  42. #42 lilady
    March 20, 2012

    @ Sami: And now…after your anesthesia has worn off…I hope your pain is minimal.

    ~15 years ago, daughter had a torsion injury to her knee (she blew out her anterior cruciate ligament and fractured the tibial plateau), while skiing. It was many, many weeks of physical therapy before surgery to replace the ACL with a cadaver ligament and then 4 months of therapy post-op. She required 2 additional touch-up surgeries.

    For once, she took my *advice* about skiing.

    *I merely “suggested” to her that I would break both her legs, if I ever saw her on skis again.

  43. #43 Sami
    March 20, 2012

    That’s the thing I don’t get about the CAMsters. Yes, rebuilding my bones was initially an emergency medicine thing, but without the *general* development of medicine, we’d still be in the era where I’d have had my leg strapped into a splint, and if I didn’t get gangrene and have to have it amputated, I’d walk with a limp forever.

    Not to mention that any intervention done would doubtless have been done without such flawless anaesthetics. And, hell, I wouldn’t have been VACCINATED against tetanus and the like, nor given appropriate antibiotics, and so instead of my incision site being, today, vaguely itchy, it would be an agonising mess of infection.

    And acupuncture can help people cope with pain, a little bit, although I suspect it’s largely the same effect as I was getting from biting my lip when I initially broke my leg – little pain somehow makes big pain easier sometimes, because you can concentrate on that instead, and trick your brain – but I’m pretty sure it’s got nothing on oxycodone.

    Immediately post-op, after my leg had been sliced up and my bones drilled into and screwed together like I’m suddenly a high school carpentry project, I was on five different kinds of painkiller, and I spent the first few days feeling sleepy, but in minimal pain.

    Emergency rooms definitely didn’t develop the capacity to do *that*. I’m pretty sure pain management technology is not actually being developed to solve the problem of “this person will be in serious pain for, like, a week, tops”.

    And yet without drugs intended for cancer patients, I don’t think acupuncture, or reiki, or magnets, could keep even the most ardent believer entirely comfortable after orthopaedic surgery, somehow.

    Special diets work, but only if that diet includes dietary ibuprofen, oxycodone, and paracetemol tablets.

  44. #44 Sami
    March 20, 2012

    @Stu: I just followed that link, and it is hilarious.

    “A trip to the emergency room or urgent care center is essential in determining the seriousness of your injury. Often, a cast is necessary to immobilize the injured bone to prevent further injury. After you have properly addressed the preliminary treatment protocol, consult an acupuncturist or doctor of Traditional Chinese Medicine for proper evaluation and the best treatment plan for your individual needs.”

    BUT I ALREADY DID THAT I went to Emergency and they evaluated me WITH AN X-RAY MACHINE and then they came up with the best treatment plan for my individual needs WITH SCIENCE

    SCIENCE AND AN X-RAY MACHINE

  45. #45 Andreas Johansson
    March 21, 2012

    Denise Walter wrote:

    A well-known woo-meister has outlined his own protocol to eliminate MRSA *naturally* ( without toxins):
    surfaces should be cleaned with hydrogen peroxide and colloidal silver solution
    ozone is useful for dis-infection of instruments et al

    Evidently, toxic substances are toxins only if administered by the Man.

  46. #46 Kk
    March 21, 2012

    Both this article and Ms Brown’s miss the point of patient satisfaction survey results entirely. I am always saddened to discover care givers who seem unable to put themselves in the patient’s shoes. OF COURSE we want care that will help us, even if that care is what I will euphemistically call ‘unpleasant’. You should be prepared to accept, though, that my reaction to it (and,thus, my patient satisfaction tally) will reflect how that care is provided. There is a world of difference in giving me medicine for my own good and treatingme with respect enough to encourage my willing participation. After all, it’s pretty hard for me to complain about something I encouraged.

    As a patient with a serious chronic illness that often requires “unpleasant” intervention, I have never blamed the caregiver for that unpleasantness WHEN I have been made fully aware of the consequences of the proposed treatment. I have observed, though, many caregivers too rushed to be kind about what they have to do, or too distracted to put themselves in my shoes long enough to know how to approach giving appropriate care in a manner that would please anyone. THIS is the basis of patient satisfaction.

  47. #47 Calli Arcale
    March 21, 2012

    Sami:

    Not to mention that any intervention done would doubtless have been done without such flawless anaesthetics.

    I once read something (possibly linked to from here) describing the state of the art of breast cancer treatment in the 19th century. I think the patient was a close relative of the President at the time or something like that; somebody very highly connected, anyway. She had breast cancer, and of course they didn’t have any chemo back then. It was surgery or nothing. And, notably, they also didn’t have anesthesia yet…..

    She was seated in a chair, in an ordinary room. (They weren’t worrying about infection control at this point in medical history.) She may have been fortified with alcohol, but I don’t recall; in any case, she was still quite conscious. Her shirt was opened to expose the breast. Her arms were restrained to prevent unintentional movement. The surgeon got out his knife, already honed to a razor-sharp edge, and swiftly got to work. When the breast was swiftly cut away, he dressed the wound, her restraints were removed, and her shirt was closed. She went on to a full recovery. Surgery without pharmaceuticals . . . the thing a surgeon in those days was most praised for was *speed*.

  48. #48 Chris
    March 22, 2012

    Calli Arcale, that was John Adams’ daughter, Abigail. Unfortunately the cancer did continue to spread and she died three years later when she was forty-eight.

    Those kind of surgeries are discussed in detail in the book The Emperor of All Maladies.

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