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.