Tag Archives: patients

Understanding the patient experience

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I have a strong feeling I’ll be glued to Twitter for the next couple of days, following the chatter about the Cleveland Clinic’s third annual patient experience summit (the hashtag is #pesummit, for anyone who’d like to follow along).

This event is a pretty big deal, drawing big-name speakers and a substantial audience. That an organization the size of the Cleveland Clinic would even host something like this says something about health care’s growing realization of the importance of patient-centered care.

Want to check out what everyone is saying on Twitter? Here are a few excerpts from the conversation:

 

 

 

 


By the time the summit ends on Tuesday, attendees will have participated in sessions ranging from the use of the social media in health care to the role of empathy in patient-centered care.

So does this all mean that health care is finally getting it when it comes to the patient experience? Well, yes and no.

For the words “patient experience” to enter the language of health care providers is a huge step forward. Likewise the seriousness that many organizations are now bringing to their efforts to be more patient-centered. It’s being talked about in ways we didn’t see even as recently as five years ago.

But we still have a long way to go – or, to be more accurate, some health organizations and some individuals seem to be much farther ahead than others.

In some kind of coincidence, the Robert Wood Johnson Foundation, Harvard School of Public Health and National Public Radio just released a new study on the experience of sick Americans – “sick” being defined as anyone who had a serious illness, medical condition, injury or disability requiring considerable medical care or an overnight hospitalization in the past 12 months.

Most were actually quite satisfied with their care. But fully one-fourth of them said they felt their condition wasn’t being well managed. Three in 10 said their doctor, nurse or other health professional didn’t spend enough time with them, and 25 percent felt they didn’t get enough information about a treatment or prescription drug. They also reported mistakes in their care – wrong diagnoses, wrong treatments and tests being ordered, hospital-acquired infections and more.

If health care is still struggling to deliver safe, appropriate care, how much harder will it be to ensure the care is also patient-centered?

This seems to be a culture change, and like all such changes, it’s much easier said than done.

A microcosm of perspectives is evident in a post and the online reaction that appeared a few months ago at the Hospital Impact blog. Guest writer Steve Wilkins describes an unsatisfying experience of having blood drawn at a hospital lab: There’s a long wait, the staff is perfunctory and no one really seems to value the patient’s convenience. “I began to feel like a rat in an experiment in which people were being socialized to accept poor service and like it,” Wilkins wrote.

Most of the response was supportive of the need for health organizations to really mean it when they claim to be patient-centered. “This is a great example of the total misalignment of what companies say and what companies do,” lamented one of the commenters.

But look at the reaction from a couple of other folks. “We don’t do the right thing anymore,” wrote one person. “We’re too busy allowing patients and families [to] make medical decisions they are not qualified to make, almost always with disastrous results. But, it’s all about ‘customer service’ these days!”

Someone else chastised Wilkins for going to a hospital for a routine blood draw: “We really would like everyone to have a truely wonderful Disney World experience while they are being treated for a very serious illness and even for those of you who are using our Emergency room as your primary care office but then there is reality.”

I also note with reluctance that while the roster of speakers for the Cleveland Clinic’s patient experience summit is lengthy and impressive, the majority of them are not… you know, patients, with an ordinary person’s perspective on what it’s like to be a patient.

It all begs the question: Is the patient experience actually being defined by patients themselves, or is it (still) primarily being defined by those in health care? Until health organizations can answer this question honestly, they’re unlikely to make the progress they really want in becoming more patient-centered.

The dreaded ‘D’ label

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Raise your hand if you’ve ever been too meek at the doctor’s office because you didn’t want to be labeled as difficult.

Yup, me too.

A recent study found that many patients wanted to be more involved in making treatment-related decisions, but often held back from doing so because they were afraid it would strain the relationship with the doctor or result in poorer care.

It’s an interesting finding, yet it probably comes as no surprise to the many folks who are trying to navigate the shifting tides of the doctor-patient relationship.

The San Francisco Chronicle, which reported earlier this month on the study, spoke to Hugo Campos of Oakland, who has been an outspoken advocate of gaining access to the raw data from the defibrillator implanted in his chest – data that’s currently only available to doctors and device manufacturers.

Campos said the issue is too important for him not to speak up, but acknowledged that “whenever I go in, I’m walking on eggshells. I’m thinking, should I say this? There’s no real partnership when you feel like you have to hold back. But I think health care is not quite ready for a true partnership.”

“We have some work to do to educate patients,” agreed Julia Hallisy, a San Francisco dentist and author of “The Empowered Patient.” “We’ve had this paternalist model where we tell the patient to sit back and let us take care of you. Now all the rules have changed.”

This study wasn’t large. From a demographic standpoint, it may not even have been very representative of the typical American patient.

The researchers recruited 48 patients from three primary care practices in Palo Alto, Calif., to participate in focus groups. Most of the patients were older than 50, educated and affluent – in short, the type of patients who would be expected to be relatively confident about asking questions. But if these folks are hesitant to challenge the doctor, you can’t help wondering about patients who are farther down the socioeconomic ladder.

What were some of the issues that emerged from the focus groups? For one thing, many of the participants said they felt some pressure to play the “good patient” role so they could avoid giving the impression they were challenging the doctor’s expertise. Although they respected the doctor’s training and knowledge, they often saw doctors as authoritarian and felt doctors themselves perpetuated this image.

When they turned to online information about their health, it frequently was because they didn’t want to rock the boat with the physician -  or because there simply wasn’t enough time during the appointment to get their questions answered.

The focus group participants reported feeling “vulnerable and dependent on the good will of their physicians,” the study’s authors wrote. “Thus, deference to authority instead of genuine partnership appeared to be the participants’ mode of working.”

Previous research doesn’t seem to have done much exploring of this aspect of doctor-patient communication. There’s a lot of talk these days about patient-centered care and shared decision-making, but how much attention has really been paid to the voices and experiences of patients themselves? More to the point, why not? That patients would fear being labeled with a scarlet letter “D” for speaking up – or, worse yet, their fear that it would be recorded in their chart and somehow influence the care they receive – ought to concern the health care community.

If this study is any indication, many patients genuinely do care about the quality of their relationship with the doctor and are hesitant to do anything that might jeopardize it. Doctors, for their part, may not even be aware of their role in creating an environment that discourages open communication.

There doesn’t seem to be an easy path toward a more equal partnership between doctors and patients, but listening to each other and attempting to lessen some of the barriers is as good a place as any to start.

The reactance factor, or why patients don’t always cooperate

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Blogger Steve Wilkins was supposed to have a colonoscopy recently. Understandably, he wasn’t thrilled about the preparation for the procedure. He knew why it was necessary but, as he explained, “the whole ritual made me feel really imposed upon by everyone – the doctor, hospital where I had the procedure, and the makers of the ‘stuff’ I had to drink.”

It’s an illustration of what’s known as reactance, or the way we respond when our behavioral freedom is threatened.

It starts with the perception that what we’re being asked to do is unfair or unreasonably restrictive. This is typically followed by an emotional and cognitive response such as “This isn’t worth doing” or “I’m not going to take it anymore.” It often culminates in action – for example, resisting the doctor’s recommendation, refusing to adhere or scoring the doctor poorly on a patient satisfaction survey.

I suspect reactance is far more common than many in health care would like to believe, and more often than not it probably goes unrecognized and unaddressed.

Wilkins writes:

If you think about it, reactance is an inadvertent by-product of the way much of health care is organized and delivered. Who hasn’t felt that waiting 45 minutes to see their doctor isn’t an unfair restriction on their time and behavior? Or who hasn’t felt that the hospital admitting process is all about protecting the hospital and does nothing for the patient other than hold them captive as some clerk reads through 30 minutes of legal mumbo jumbo.

Commenters had no trouble coming up with examples of health care situations that tend to trigger reactance. Surgery patients are almost always told they can’t have any food after midnight the day before their surgery, even when the surgery isn’t scheduled until the following afternoon and fasting from midnight isn’t necessary, one person pointed out. Someone else noted how long-term care facilities often have restrictive food choices for their residents or don’t allow them to be in a room with the door closed.

Carolyn Thomas, a heart attack survivor who blogs at Heart Sisters, offered yet more insight into why a medical visit can provoke reactance in the patient. She calls it “the one damned thing after another phenomenon”:

People with chronic disease diagnoses put up with a lot (not to even mention the actual disease!) so that yet another appointment for yet another test, treatment, specialist’s consult or lab procedure can loom larger than it actually is – yet another interminable sentence in yet another waiting room, yet another anonymous new face who knows or cares little about us as human beings other than we’re just their 2 o’clock echocardiogram or consult or scan or EKG or (fill in the blank here).

Why should it matter in health care? Because when it’s overlooked, it can influence patient outcomes – and not always in a good way, Wilkins says.

The Healthy Influence – Persuasion blog puts it another way: “Virtually everyone has some power to create and enforce rules, procedures, events, etc. You decide what will happen, when it will happen, in what order, and by whom. You need to realize that if you use that power in a way that is perceived as an unfair restriction on your target’s freedom, they will be unhappy campers.”

There’s been some research on the role of reactance in health care and how it can affect the patient’s motivation. It’s worth noting that reactance doesn’t only apply to patients – for instance, efforts to change physician behavior in areas such as hand hygiene or prescribing habits can be an uphill battle and sometimes result in even less compliance than before.

What can be done about reactance so the desired results can be achieved? It may not be possible to eliminate it but researchers suggest it can be minimized, as long as there’s “a reasonable balance between what providers ask a patient to do (take a medication, get a colonoscopy, or wait 45 minutes) and the reasonableness and fairness of the request as perceived by the patient,” Wilkins writes.

Research also suggests that when rules and policies are made, the target audience – in this case, patients – is more likely to be OK with the rules if they’ve been allowed to participate in the process. As fuzzy as it might sound, the foundation of patient engagement and shared decision-making seems to be built at least as much on psychology and emotions as on clinical outcomes and quality indicators.

Undermining the patient

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The way some people tell it, most patients are ignorant, unmotivated consumers of health care who’d rather seek the opinion of a doughnut vendor in the hospital lobby than do the actual research it takes to find a qualified doctor.

Harsh words? They come from Dr. Jon Cohen, a vascular surgeon and chief medical officer at Quest Diagnostics, who spoke last week at the annual TEDMED conference in Washington, D.C.

Among some of the excerpts from his talk: The average American spends more time deciding which TV to buy than choosing a physician. Consumers are more likely to judge the quality of their health care on the basis of service – whether the parking was convenient and how long they spent in the waiting room – than on the basis of the actual care they received and whether it was clinically appropriate and effective.

Finally, most people just aren’t motivated enough to be good consumers of health care, Dr. Cohen concluded. “Consumer-driven health care doesn’t work because people don’t want health care.”

Ouch.

There’s some truth to this. But in saying it, Dr. Cohen has unwittingly exposed the gulf that often lies between patients and health care professionals – namely, that they approach the patient experience from entirely different perspectives and an entirely different fund of knowledge. And it’s a mistake to write off the patient’s behavior as uninformed or unmotivated or unconsumer-like without considering the validity of the health care experience from their point of view.

The TEDMED folks unfortunately haven’t yet posted a video of Dr. Cohen’s speech, so I’m relying here on secondhand reports of what he said. I’m going to give him the benefit of the doubt by assuming he meant to give his audience some food for thought rather than bashing on consumers.

But the whole tenor of his talk raises some pretty interesting questions: If it’s so hard to get Americans to think like well-informed, thoughtful health care consumers, whose fault is it (if, indeed, “fault” is the word we want to use)? If people aren’t better health care consumers, is it because they don’t want to be, or is it because they’re being held back by how the current system functions? If patients make decisions on the basis of different values and beliefs than clinicians, does this invariably make them wrong?

A glimpse of the online reaction that emerged this weekend in response to the TEDMED conference suggests people feel rather strongly about the issue. A commenter at the Wall Street Journal called it “a typical paternalistic surgeon perspective. Everybody is dumber than they are, and nobody can make a decision as well as they do.”

“Let’s get real here,” opined someone else. “If the consumer had transparency into key drivers like, quality, cost, access and could have a ‘real’ discussion with care providers then maybe the average consumer could become a good health care consumer… The insurance companies, pharma companies and the provider communities need to check their ego at the door and actual[ly] SERVE their patients as CONSUMERS.”

Bunk, argued another commenter. Patients don’t behave like consumers because their health insurance cushions them from the cost of their care and they have no financial incentive to shop around for quality or cost-effectiveness.

The mHealth Insight blog has another point of view: “I don’t think we should be blaming the key stakeholders (patients) for the way they make choices but focusing on the failure of healthcare providers to bring transparency to the services they offer.”

For what it’s worth, I suspect a lot of people want to become more informed as patients and health care consumers. No, wait, make that: I know a lot of people want to become better patients and health care consumers. But the system doesn’t make it easy for them, and I think Dr. Cohen is dead wrong in his assertion that “intense desire trumps all barriers” to becoming good health care consumers.

Whenever the topic turns to patient empowerment, it seems to stumble into a double bind: Patients are told they should be more engaged and involved in their care, yet they’re given few tools for doing so. They’re lectured for not doing more yet the expectations are often set woefully low on the assumption they’re not smart enough to get it anyway (the assertion that most people don’t really want to be good health consumers being a case in point). One minute they’re exhorted; the next, they’re undermined.

Could patients do more to educate and advocate for themselves? Of course they can, and should. Sheer desire isn’t always enough, however, to overcome systemic barriers and the weight of a health care culture that’s still of two minds whether to accept that patients are indeed capable of becoming more involved partners in their care. If patients are falling short at being good health care consumers, it would seem there’s plenty of blame to spread around.

Photo: Wikimedia Commons

Defining patient engagement

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Everyone in health care is talking these days about patient engagement, but a funny thing happened on the way to the discussion: There doesn’t seem to be a widely agreed-on definition of what this actually means.

When the National eHealth Collaborative recently released the findings from an online survey conducted in February, the responses were all over the map.

Some thought patient engagement meant the ability to email the doctor, make an appointment online or have online access to the medical record. Others thought it meant access to educational information about health. Some thought it meant a willingness and comfort with asking questions or challenging the doctor’s recommendations.

Virtually everyone who responded to the survey said it was either “important” or “very important” for patients to be engaged in their care.

But how can patients be expected to do this when no one is sure what patient engagement is supposed to look like?

If the survey accomplished anything, it was to shed some light on the lack of widespread consensus and to identify the beginnings of some common points of agreement.

Of the 185 people who took part in the survey (admittedly a very small sample size for drawing any meaningful conclusions), the description on which they agreed the most was “Patient uses educational material and online resources to learn about better health or their own health conditions.” This was closely followed by “Patient uses tools and resources to manage his or her medical record and other health data.”

I was interested to note that “Patient feels comfortable challenging doctor when something doesn’t seem right or when explanations are not clear” ranked third among the responses picked by the survey participants. Does patient engagement mean it’s OK for the patient to disagree with the clinician, then? Plenty of folks would say that engaged patients are the ones who go along with whatever the doctor recommends (and sure enough, 22.7 percent of the survey respondents said “Patient follows their doctor’s orders after a visit” was a sign of an engaged patient).

Since this was a survey carried out by the National eHealth Collaborative, it isn’t surprising that health information technology was seen as a critical piece of patient engagement. But is this the most important ingredient? Can someone who doesn’t even own a computer still be an engaged patient?

What about concepts such as active participation by patients in their health care? Or commitment to learning more about their health at whatever level they’re comfortable with? Or self-management and shared decisionmaking?

More negatively, does patient engagement mean patients will start dictating the terms of their care, even when what they want is medically inappropriate?

And who gets to define patient engagement, anyway? Does this rest with patients alone? With providers? With both of them together?

Here’s how Donna Cryer, CEO of CryerHealth, defines it in a post she wrote last year for the Prepared Patient Forum at the Center for Advancing Health:

Properly done, patient engagement in action looks like shared responsibility between patients (and their families if applicable), health care practitioners (the entire team: surgeons, physicians, nurses) and healthcare administrators (providers of the infrastructure and payment models) to co-develop pathways to optimal individual, community and population health. Patient engagement brought to life means involving patients and caregivers in every step of the process, providing training or financial support if necessary to their participation.

An infographic put together recently by Steve Wilkins of the Mind the Gap blog offers further insight into some of the challenges of defining patient engagement. Simply giving patients access to information doesn’t mean they’ll know how to use it, he writes. And measuring engagement by the patient’s willingness to ask questions and challenge the doctor fails to account for the time constraints in the exam room or the lack of confidence many patients feel in speaking up.

The role of the patient is being redefined in ways that are more far-reaching than perhaps any other time in history. Traditional power structures are being upset, and this can be unsettling to patients and providers alike. Although it may be tough to reach a consensus on what the core principles of patient engagement should be, it’s important to the process – and yes, engagement means patients should be part of it.

The decline of empathy

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It’s probably safe to say that most medical students start their training with a high desire to be empathetic toward their patients.

But these ideals often don’t survive the grueling process of becoming a doctor, a recent study published in the American Journal of Pharmaceutical Education has found.

Researchers at Midwestern University in Chicago and Thomas Jefferson University in Philadelphia wanted to know whether exposing first-year medical and pharmacy students to a theatrical exercise depicting the challenges of aging would improve their ability to empathize.

It did. The study involved 370 students at the Chicago College of Pharmacy and the Chicago College of Osteopathic Medicine at Midwestern University. They were asked to complete a test measuring their empathy levels before and immediately after the skit, and they scored significantly better afterwards. Unfortunately, though, the effects weren’t long-lasting. When the empathy test was administered again (one week later for the pharmacy students, 26 days later for the medical students), most of the scores had returned to their original baseline.

This doesn’t necessarily mean these students were completely lacking in empathy. But it points to the difficulty of instilling and maintaining this quality in the future health care workforce as they progress through their training.

Previous studies have reinforced this. The one that’s probably cited the most often appeared in 2008 in the Academic Medicine journal and examines what the authors describe as “hardening of the heart” during medical training. It tracked four classes of students at the University of Arkansas for Medical Sciences and documented notable declines in empathy scores, especially after the first and third years of medical school.

Similar findings have been reported among students in dental school and in postgraduate medical education.

Given the intensity of medical training, it seems inevitable that students would undergo some hardening of the heart, if for no other reason than to cope with the sheer burden. The academic demands are rigorous. The reality of providing care for actual patients, which starts in their third year, can be overwhelming and disillusioning for many students, especially when patients die or don’t fare well. Training environments that place medical students at rock-bottom in the pecking order are exhausting at best and abusive at worst. Add in the ever-present anxiety about grades and educational loans, and it’s no wonder that empathy begins to take a back seat.

Here’s a peek at the emotional state of a second-year medical student at Johns Hopkins who is about to transition into hospital training:

Suddenly the theoretical becomes practical, the “nice-to-knows” become “must-knows,” and simple clinical scenarios become ethical dilemmas. The vicissitudes become quite intense: one moment you feel ready to save a life as you stand triumphant over a mannequin, then suddenly you’re hovering in the pediatrics emergency department hearing the gurgle of a seizing child and feel completely helpless to handle such situations.

But it all begs the question: Is empathy something you can teach to medical students, or is it innate? If it’s teachable, can the curriculum be strengthened to foster and develop empathy? If it’s innate, should the admission process put more emphasis on selecting students who have this quality?

The 2008 study in Academic Medicine uncovered some interesting nuances. Overall, students who chose specialties in fields with a high amount of patient contact and continuity of care – family medicine, internal medicine, pediatrics, obstetrics-gynecology, psychiatry – had higher scores on the empathy scale than those in other specialties such as surgery or radiology. Male students in the core specialties actually scored higher than the population norm at the beginning of their training. On the other hand, the largest decline in empathy scores took place among male students in non-core specialties. Meanwhile, female medical students started at the norm and scores then declined for females choosing non-core specialties.

Of note, few if any of these students entered medical school with a deficiency in their empathetic abilities. But something about the training process may have diminished their capacity to feel empathy for others. To date there haven’t been many studies to determine whether this is temporary or whether it persists throughout their career. The study in the pharmacy education journal suggests that even when students are exposed to academic exercises specifically designed to increase their empathy, the effects may be short-lived.

Despite a lot of study, especially in the past decade or so, there remain many questions about how best to foster empathy in students who will be spending the rest of their working years in patient care. It matters because patients are more likely to comply, more likely to receive an accurate diagnosis and more likely to be satisfied with the clinician-patient relationship when empathy is present, the pharmacy journal authors wrote. “Empathy is an important component of the healthcare provider-patient relationship that has been linked to optimal patient outcomes.”

Avoiding the doctor’s office

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Somewhere in the midst of the national conversation about health care costs and effective, evidence-based care, Americans started going to the doctor less often.

Surveys and reports have been trickling in for at least three years, documenting a persistent decline in the number of office visits and the slowest spending growth on office-based physician services since 1960.

Just how pervasive this trend has become was summed up last week by American Medical News, which reviewed several studies and found one thing in common: Patients are staying away from the doctor’s office because they’re afraid of being saddled with a large bill.

From the article:

Even two years after the official end of the recession, the studies report patients struggling to handle medical bills, or fearing they won’t be able to handle them. Physicians might not notice the decline on a day-to-day basis – perhaps it’s one or two fewer patients a day – but the numbers add up over time.

The evidence goes contrary to the popular belief that most Americans seek medical care for anything and everything and are spending the health care system into oblivion.

In one of the studies cited by American Medical News, the Centers for Medicare and Medicaid Services found that national spending on health care increased by 3.8 percent in 2009 and 3.9 percent in 2010. This was the lowest in years, and reflects slowdowns in almost every category, from office visits to prescription drugs to hospital procedures.

The decline in office visits isn’t just among the uninsured; it also includes those with health insurance. What’s particularly worrisome, according to a Commonwealth Fund study issued late last year, is that many of the individuals avoiding the doctor’s office are sicker and might not be receiving needed care.

I was interested to learn recently that the we’re-all-spending-less-on-health-care trend apparently isn’t confined to the human species. The American Pet Products Association reported this month that spending on veterinary services in the U.S. is growing only in the single digits and is projected to slow in 2012.

It’s not hard to draw the obvious conclusion: The recession has taken an enormous toll on people’s financial security and they’re attempting to cut costs wherever they can.

I suspect there’s more going on here than simple economics, however, and a recent column at The Health Care Blog more or less reinforces this. In a piece titled “It’s NOT the Economy, Stupid!”, J.D. Kleinke of the American Enterprise Institute writes that health care spending “has been cooling, slowly and steadily, since 2002.”

Oops! Turns out the recession has had nothing to do with a 10-year trend – one driven not by government inaction and then the recession and threat of “ObamaCare” – but by slow, steady, cumulative improvements in medical care and, as importantly, by the introduction of marketplace disciplines into the demand for and purchase of that health care.

Kleinke also posits that what we’re seeing is “health care simply self-correcting, slowly and tediously, nearly a decade after the failure of the great managed care experiment of the 1990s.”

He makes a number of compelling points. I’m not convinced, though, that “marketplace disciplines” are solely responsible for what’s happening. More Americans are uninsured, probably because of increasingly unaffordable premiums and deductibles, the recession or both, and people who are uninsured generally are slower to seek care. I’m also sensing a growing backlash among people who feel health care in the U.S. has become too aggressive and who are becoming more outspoken about the need for a “less is more” approach.

Or maybe what’s really happening is what a Health Care Blog commenter described as “a tired, bloated industry running out of gas.”

Either way, some caution is called for. The decline in physician office visits could be good if it means medical practices are being more efficient about when and how often patients need to be seen, and patients are thinking twice about the necessity of the visit. But it could be not so good if it means people are avoiding or delaying necessary care – and possibly incurring higher costs for problems that are allowed to escalate into something worse.

In health care, cost and utilization are closely intertwined. It’s hard to change one without changing the other. Ideally, there should be a point of equilibrium, but we haven’t found this yet and may not ever reach it. In the meantime, lower cost and utilization do not automatically equate to a healthier population. This seems to be a case of being careful what you wish for.

What do patients want, anyway?

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After I blogged recently about patient complaints, an anonymous nurse left a thoughtful comment about the difficult working conditions that hospital nurses deal with daily – the long shifts, the interruptions, the frenetic multi-tasking and, yes, patients and families who are rude and demanding.

If nurses don’t respond quickly enough or if they make a mistake, it isn’t on purpose, she wrote. “I feel for the patients, but they need to understand our side as well.”

Coincidentally (or maybe not), an essay by registered nurse Theresa Brown appeared this week in the New York Times, exploring the growing emphasis on patient satisfaction and why this trend may end up compromising care rather than improving it. Hospitals aren’t hotels, she reminds us. “In order to heal, we must first hurt.”

Although it may not be obvious, there’s a common thread here and it has to do with patient expectations.

What Do Patients Want, anyway?

They want outcomes that are perfect, argues a blogging emergency-room doctor. They want to be paid for their time in the waiting room, suggests someone else.

A recent analysis by DrScore.com claims to have found the answer, based on 36,000 patient satisfaction surveys submitted to its website: They want a short time in the waiting room and a longer visit with the doctor, and they want a doctor who cares about them.

My sense is that the focus on the patient experience has been long overdue. Health care has historically been mostly a one-way street: Health care professionals provided care and patients received care. This may have been a comfortable arrangement for providers but it hasn’t always been best for patients, and patients these days want more say – or, at the very least, more consideration of the health care experience from their perspective.

It’s understandable that many health care folks worry about where this is headed. Will patients start dictating the course of their care? Will satisfaction become more important than good clinical decisions? Are we stampeding off the cliff?

For what it’s worth, this doesn’t have to be the hostile takeover of health care by patients that some envision.

Patients may not know as much as clinicians but this doesn’t mean they don’t know anything or are incapable of learning.

Most patients understand the difference between a hospital and a hotel.

Most patients understand that health care sometimes involves pain, discomfort and waiting.

Some patients are unreasonable (they’re probably unreasonable in other areas of their lives too) but many patients are more willing to be reasonable than they’re given credit for.

What do patients want? They want to be seen as a human being. They want to be treated as an individual. They want to be heard. They want to be respected for what they know. They want the health care experience to go smoothly. They want information. They want glitches to be acknowledged and addressed. They want to feel it’s OK to report a problem with their care. If there’s going to be pain or discomfort, they want it to be minimized. If the news is bad, they want it to be broken with compassion. When something goes badly wrong, they want a response that demonstrates concern and a commitment to finding out what happened and fixing it. They want to feel confident that their clinicians have the patient’s best interests at heart.

What don’t patients want? They don’t want to be treated as if they’re a diagnosis or a body part or a problem. They don’t want their concerns trivialized. They don’t want to feel rushed. They don’t want decisions to be made behind their backs. They don’t want to be spoken down to. They don’t want to feel judged. They don’t want their trust to be betrayed. They don’t want to feel abandoned. They don’t want to worry that if they register a complaint about their care, they’ll be labeled as whiny, unreasonable or difficult.

Admittedly this is an unscientific view. But it’s gleaned from many hours of talking to other people, listening to conversations and looking for the common threads in what patients like and don’t like about the health care experience.

It’s a hard conversation to have without someone resorting to defensiveness. The conversation might be less difficult, however, if clinicians and patients would make fewer assumptions and actually listen to each other. It’s not easy being a clinician but it’s not easy being a patient either. We could all stand to cut each other a little more slack.

Excerpt

Giving the patient bad news

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The patient, a young rodeo rider from rural Ohio, lies in a hospital bed, sick and in pain. The doctor has the results of his bone marrow biopsy and the news isn’t good: It’s Hodgkin’s lymphoma, a cancer of the lymph system which will require chemotherapy.

But that’s not all. In this excerpt from “The Country Doctor Revisited,” Lorence Gutterman describes what happens next:

I take in a deep breath, prepare myself for the next part. “But there’s another problem. You have AIDS.” I remain quiet but am unsatisfied that I’ve told him this without a family member or close friend in the room to comfort him after I leave. Carter turns away from me. I notice how thin his black hair is on the back of his head. In this moment, it’s not important how he got AIDS.

“Does Betsy know?” he asks.

“Not yet. Do you want to tell her or should I?”

“Ya tell her. God, I hope she’s okay.”

“She should be tested for AIDS.”

A slight nod and more silence. There are no right words to fill these spaces.

Sooner or later, virtually every doctor is forced to be the bearer of bad news. But although this is an important skill to have, few physicians receive formal training in how to convey difficult news to their patients.

The Journal of Cancer Education reported recently on a promising method of teaching this to medical students: videotaped practice sessions that allow students to role-play with standardized patients and receive feedback from the mock patients themselves.

Medical students who participated in the role-playing said afterwards that they felt more comfortable in their ability to deliver bad news. They especially benefited from the discussions with the standardized patients, many of whom were cancer survivors and familiar with the emotions – shock, denial, tears – that accompany difficult medical news.

The project was carried out at the University of South Florida College of Medicine. USF students who participate in an interdisciplinary oncology clerkship are required to complete two to three hours of training – first with other medical students and then with a patient actor – in how to convey bad medical news to patients. The mock interviews in the exam room are recorded and then analyzed to help the students identify their strengths and weaknesses and how they can improve.

The researchers wanted to know: What did students think of this teaching method? More to the point, did it help them increase their skills?

Overwhelmingly, students found it beneficial, the study’s authors reported. Although nearly all of them at some point during their medical education had seen bad news being delivered to a patient, only half had given the bad news themselves.

They found the feedback from the standardized patients especially valuable – more so than only receiving feedback from an instructor. The students also felt the role-playing exercise resulted in an overall increase in their knowledge of best practices for conveying bad news.

Giving bad news has always been one of the most difficult parts of medicine, and many physicians are highly uncomfortable with it or don’t do it very well. One study carried out in the United Kingdom, using audiotaped interviews with newly diagnosed cancer patients at a London teaching hospital, found that oncologists usually dominated the conversation, were more focused on the medical details than the patient’s emotions, and often failed to respond empathetically to the patient’s distress.

Another study, at Wayne State University in Michigan, evaluated medical residents on their skills in delivering bad news and found “a general lack of competence,” especially in their ability to converse in a way that was patient-centered.

Both of these studies were conducted in the 1990s, when the concept of patient-centeredness wasn’t particularly widespread. The curriculum at most medical schools has greatly expanded since then, incorporating more training to help medical students communicate better with patients and demonstrate more empathy.

It’s one thing, however, for students to practice and get feedback from their instructors and quite another to practice and get feedback from someone who’s actually been a patient, even if only a standardized patient.

The authors of the Journal of Cancer Education study concluded that although role-playing isn’t a substitute for a real-life encounter with a patient, it provides “a safe learning environment for the student. As a result, the students will have a solid background from which to begin developing good communication skills in the oncology setting.”

Patient satisfaction: Deadly to your health?

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Do patients truly benefit when health care providers pay attention to the patient experience?

A rather startling new study suggests otherwise. In fact, researchers found that the patients who were the most satisfied with their care also had higher prescription drug expenditures, were more likely to be hospitalized and more likely to die.

How can this be?

Predictably, many in health care are saying “I told you so.” The increasing emphasis on patient satisfaction as a measure of quality care has never sat well with some clinicians – for instance, the anonymous doctor who offered this online reaction to the study’s findings: “Now that the ‘patient satisfaction’ industry has taken root, we will continue to waste billions and billions of dollars on this each year, money that could have gone towards providing genuine health care.”

It’s a valid question to ask. Intuitively, you’d think that when patients are happier with the care they receive, they’re more likely to have a good relationship with providers, more likely to be engaged in their care, ask questions, follow directions and have better outcomes. But whether this is actually the case hasn’t really been tested rigorously enough to prove it; it’s gut instinct, not science.

Let’s back up for a minute and see what the study says. It was published this week in the Archives of Internal Medicine and involved data on cost, health care utilization and patient satisfaction scores for 51,946 adult U.S. patients.

Among the key findings:

- Patients who reported the highest satisfaction with their care were more likely to be hospitalized than patients who were less satisfied.

- Higher patient satisfaction was associated with higher prescription drug costs and higher overall use of health care services, but lower use of emergency rooms.

- Patients who were the most satisfied had a 26 percent higher mortality risk, even after the study’s authors excluded patients who had three or more chronic conditions and who had self-rated their health as poor.

The authors offer several possible explanations for their findings. Patients often expect – and demand – unnecessary drugs and tests, and they’re more satisfied when doctors cave in and give them what they want, even if this amounts to inappropriate or possibly harmful care, the researchers suggested.

Or maybe patients who received more care also were more reliant on their doctors and hence reported higher satisfaction, although the study’s authors note this doesn’t really explain the apparent connection between higher utilization and more patient satisfaction.

I’m not sure what to make of all this. But with all due respect to folks like uberblogger Dr. Kevin Pho, whose headline this week proclaimed, “How patient satisfaction can kill,” I don’t think this study offers proof that efforts by the health care industry to be more customer-centered are bad for patient care.

Patient satisfaction and clinical outcomes are not the same thing. Although there may be a link between the two, this is a far cry from establishing cause and effect.

Perhaps the real issue is that patient satisfaction, at least in some people’s eyes, has somehow become conflated with giving patients whatever they want. Would patients themselves define it this way? I’m not sure they would; they’re often more likely to use words such as “caring,” “compassionate,” “respectful,” “understanding” and “listens to me” when they describe what makes them satisfied.

Perhaps clinicians are judging on the basis of a different scale. Patients can be surprisingly tolerant of a less than stellar outcome – in other words, more satisfied – as long as they feel they’ve been treated like a human being. Clinicians, on the other hand, might be more apt to see a negative outcome as a failure, period.

Maybe we’re simply not very good yet at measuring patient satisfaction, or we’re using indicators that aren’t particularly meaningful. (Who’s selected to fill out those patient satisfaction surveys anyway? I have never, ever been asked to fill one out.)

If health care leaders focus on patient satisfaction to the exclusion of all else, then yes, it has the potential to be detrimental and even harmful. And clinicians who order drugs and procedures in the belief this is what’s needed to make patients happy (and keep their own satisfaction scores high) are not doing any favors for patient care.

But let’s not allow this study to persuade us to throw out the baby with the bathwater. The collective gut feeling of patients like me is that, on some level, caring about patient satisfaction truly does matter.