A health scare, but not enough to change their ways

A heart attack or a cancer diagnosis is usually life-changing, yet many people do little afterwards to alter their lifestyle or behavior in ways that might reduce their future risk.

Various studies have been cropping up lately, all with the same conclusion. One can’t help connecting the dots and wondering what it bodes for the long-term health picture.

The bigger question  here, though, isn’t “what.” It’s “why.”

The latest study comes from Canada, where researchers found that even when people had a history of coronary heart disease or stroke that put them in a higher risk group, they weren’t much more likely than the general population to adopt three key changes associated with reducing their risk of a second heart attack or stroke: smoking cessation, regular physical activity and a healthy diet.

The study used epidemiological data on more than 154,000 individuals from 17 countries. Of the 7,500 participants who reported a previous history of heart attack or stroke, about 18 percent continued to smoke and 60 percent didn’t follow the recommendations for a healthier diet.

Not surprisingly, those who lived in higher-income countries fared better on all three measures.

Here’s another study, this time from the cancer front: Researchers who looked at survivors of melanoma, the most serious form of skin cancer, found that about one in four skipped the use of sunscreen and 2 percent continued to visit tanning salons.

The study results “blew my mind,” Dr. Anees Chagpar, the study’s author, told CBS News.

Other studies have found that cancer survivors are just as likely as everyone else to be overweight and inactive, even though these two factors are tied to a higher risk of recurrence for certain forms of cancer.

Is this a huge collective failure of patients to heed the so-called teachable moment in health care? Or does it signal something deeper?

I suspect it’s the latter. As anyone who has attempted to adopt a healthier lifestyle can attest, changing your ways is often very difficult. It takes a high degree of motivation and support to persevere, and the stress of a serious health event can add complicating factors that might not be addressed or even recognized.

Depression, for example, is common among heart attack survivors, yet the possibility of post-heart attack depression is rarely discussed with these patients. Multiple studies have found that among those who develop depression after their heart attack, the majority are undiagnosed and untreated. That they may struggle and fail to adopt healthier lifestyle habits should not be surprising.

One survivor, responding to a frank entry on the Heart Sisters blog about depression and heart attack survival, put it this way: “Physically I am not the same person and don’t think I ever will be. Everyday life details are not important to me anymore. I see myself stepping further and further behind and no one understands.”

Ditto for the physical and mental toll of cancer treatment, which can leave survivors with long-lasting fatigue, cognitive impairment, nerve damage and more. Although efforts are underway to improve survivorship care in the U.S., progress is slow and uneven, leaving many survivors – perhaps the majority – still under the radar.

The health care system itself hasn’t completely figured out who should handle the “teachable moment.” Should it be the cardiologist? The oncologist? The primary care doctor? A rehab nurse? In the meantime, opportunities to talk to patients about making behavior changes are being missed.

Then there’s the question of who pays to help people change their habits after a major health event – and I’m assuming here that many will need some support, even if it’s only minimal.

It takes staff and resources to provide the education that may be necessary, and reimbursement is often low. Although many health insurance plans include coverage for smoking cessation, there’s considerable variation in what they offer, and some states don’t cover tobacco cessation at all for their Medicaid enrollees.

We could ask people to pay out of pocket for their patient education, nutritional counseling, depression screening and tobacco quit services, but this doesn’t mean they can afford it or that they would make it a financial priority – or, indeed, that they would recognize they might need all of these.

Maybe the whole notion that a health scare should be enough to make people change their ways is flawed. It might be motivation only for some. For others, the motivating factor may be something very different. If we hold the tsk-tsk’ing long enough, we might start to figure out what really lies behind the seeming lack of lifestyle change and what can be done to have a more positive impact.

Health care’s new paternalism?

Is the patient’s blood pressure at 120 over 80 or below and controlled with one or more medications if necessary? Check.

Normal body mass index? Check.

Recommended screenings carried out according to the recommended schedule? Check, check, check.

But here’s the real question: Are all of these goals important to the patient, or does he/she see them as frustrating, burdensome and perhaps impossible to achieve?

The push toward better health care has organizations and clinicians focusing a tremendous amount of energy these days on patient outcomes. Few policymakers seem to have asked, however, where patients fit into this and how they feel about having their health goals – appropriate weight, appropriate blood pressure, glucose and cholesterol levels, appropriate prescription medications and so on – essentially dictated to them.

Is it going too far to call it a new form of health care paternalism?

If you listen closely, you can hear the beginnings of some pushback from people like Dr. Victor Montori of the Mayo Clinic, who last week talked to the Star Tribune of Minneapolis about hitting the pause button on all the checklists and having a heart-to-heart conversation with patients about what they really want.

An excerpt from the newspaper’s interview with Dr. Montori:

He argues that doctors must take into account the patients’ “values and preferences.” If one drug can bring their blood sugar down a notch, but doesn’t make them feel better, is it worth taking? “It’s making sure we don’t make any decisions about them without them,” he said. It’s a strategy that stops demanding perfection from patients and focuses on the treatments that are most important to them. “So they only get what they need and what they want.”

This is squarely at odds with the current approach of setting goals and measures and expecting all the players to reach these targets in order to achieve quality care.

There’s much at stake. By fiscal year 2015, fully 30 percent of Medicare payments to hospitals will be based on outcomes. Medical practices are dealing with similar pressure to reach specific goals in patient care.

This isn’t to say health care shouldn’t be held accountable for results. Outcomes do matter. But when an organization’s fiscal health and people’s livelihoods are on the line, it’s not hard to see why there would be a rising tide of all-around frustration when patients can’t – or won’t – meet the prescribed goals.

Meetings of the Rice Memorial Hospital board here in Willmar are normally rather subdued, but one of the most animated discussions I’ve seen in months erupted this week over the issue of patient adherence.

The doctors in the room spoke of the challenge of persuading their patients to adhere to the standard, and the frustration of being penalized when they don’t.

The hospital leaders in the room spoke of the unenviable task of being asked to meet goals that may hinge on patient decisions and behaviors beyond the hospital’s control.

The implications go deeper than this, though. What about hospitals who care for high numbers of elderly, frail and medically complex patients who may not have outcomes as favorable as that of a younger, healthy population? What about the 90-year-old who has been living with congestive heart failure for a decade and has decided it’s time to stop with aggressive management of the condition?

Should hospitals and medical practices become more selective about the patients they’re willing to take and start turning away those deemed to be too sick or too complicated or less likely to be compliant? Most Americans would agree it’s unethical (or at least unfair) to cherry-pick the “best” patients, but there’s no denying this looms as one of the unintended consequences of outcome-based payment. Left unanswered in all of this is who, exactly, will care for the sickest and most vulnerable when the reimbursement model is rigged against them.

Finally, there’s the issue of patient autonomy. The patient’s right to make his or her own medical decisions is one of the core tenets in American health care. This basic value seems to mesh uneasily, however, with performance-based payment. What happens to patients who don’t want to take a particular medication because the regimen is too burdensome or the side effects are intolerable? What about the patient who simply wants to feel better and function better rather than meeting specific target numbers?

To make things even more complicated, all of this is taking place simultaneously with a growing emphasis on patient-centered health care and shared decisionmaking.

It’s far from clear how this is supposed to fit together, or the extent to which the average consumer is aware of the push-pull between giving patients more say in their care, while at the same time deciding on their behalf what the measure of their health should be.

Don’t look for this to be resolved anytime soon. No one ever said health care was simple.

Change fatigue in health care

The patient was at the hospital for a straightforward same-day surgery but the admission process fell far short of efficient. She was directed hither and yon – first to the registration desk, then to the lab, then to another location for a pre-surgery assessment, then a fourth stop to collect a medical history.

When an accompanying friend asked one of the nurses why all these steps couldn’t be consolidated at the bedside, the response, delivered with a shrug, was “That’s the process – we’ve tried a lot of other things but they never work for long.”

What’s being described here is more than an obvious failure to be patient-centered. Tammy Merisotis, of GE Healthcare, sees it as a prime example of the apathy brought on by change fatigue.

“Change fatigue occurs when staff are expected to make multiple or continued changes in workflow process and patient protocols, without seeing the benefits of those changes in their everyday work,” she writes. “As they are bombarded with constant change, it is easy for people to become disengaged and resistant to change.”

Change fatigue is nothing new. But there seems to be much more of it these days, especially in health care, which is under intense pressure to change, change and change some more.

Although accurate estimates are hard to come by, it’s thought that as many as half of organizations overall are attempting to implement three or more major changes all at the same time.

In and of itself, change isn’t necessarily bad. A good chunk of the transformation taking place in health care is arguably for the better – more emphasis on evidence-based practices, more emphasis on safety, greater attention to how patients experience the health care system, and more awareness of the role of organizational culture in fostering and sustaining high-quality care, to name a few.

But the dark underbelly of all this transformation is that the people carrying out the work can grow tired of the continual demand to adapt and change, particularly when they may not see any immediate benefit. Burnout has always been an occupational hazard in the high-stress environment of health care; change fatigue is upping the ante even more.

Consider what nurses in an online forum had to say about the growing practice of “bedside report,” or including the patient and family in the exchange of information between nurses as they go on and off shift.

“I only hope it will be a short lived fad, but we were told by our new manager this will not be an option,” grumbled one nurse who was struggling with the logistics of how the bedside report process is supposed to happen.

Elsewhere, nurses shared their experiences with working in a unit that closed because of hospital restructuring.

“We were given practically no notice and they did not help us with a transfer, it was up to us to find a new opportunity,” one person wrote. “I’ve been in a new unit for about 4 months and it’s a constant struggle being the new one on the unit, learning a whole new way of doing things and just learning a new specialty.”

The sense of continually coping with change seems to extend throughout the health care world. Although the patient-centered medical home is viewed by many as the direction in which primary care needs to go, early adopters are learning that it requires deep, structural and sustained change in order to be successful.

Take, for example, an assessment of the first national demonstration project involving medical practices that were transitioning to the patient-centered medical home model. Even in physician groups that were highly motivated, change fatigue was a serious concern, wrote the authors of the analysis, which appeared in the Annals of Family Medicine:

The work is daunting and exhausting and occurring in practices that already felt as if they were running as fast as they could. This type of transformative change, if done too fast, can damage practices and often result in staff burnout, turnover and financial distress.

Surprisingly, there’s been little substantive research on how organizations cope with major changes. But in a study published a few years ago in the Personnel Psychology journal, researchers who tracked employees at a large government office going through major organizational restructuring found that the changes had a huge impact, not only on people’s emotional well-being but on their job performance as well.

Workers who perceived the changes as negative were at higher risk of calling in sick more frequently and performing more poorly on the job, the researchers found. These folks also were more likely to quit.

Another risk is that organizations may simply run out of steam, with new initiatives that go nowhere or fall short of what they intended to accomplish.

One lesson the researchers learned from their study: Although change is usually inevitable, change fatigue isn’t. Organizations that managed change most successfully were those that kept workers in the communication loop and emphasized what was positive about the changes, the researchers said.

“Communicate, communicate, communicate,” is the advice of Angelo Kinicki, one of the authors of the Personnel Psychology study. “In life, stuff happens. What matters is not so much what that stuff is, objectively speaking, but what matters is how we interpret it.”

Moving in with the adult children

Are middle-aged adults ready to have their aging parents move in with them?

Sort of, but if the results of a recent survey are any indication, many adult children anticipate there will be some difficult moments – if, indeed, they’ve thought about it at all.

The survey was released this week, just in time for Mother’s Day. It was commissioned by Visiting Angels, an in-home senior care company with some 450 private-duty agencies across the United States, and provides a revealing snapshot of how adult children view their responsibilities toward aging parents.

The good news: Most of the survey participants (there were 1,118 respondents age 40 and over, three-fourths of whom were women) said they would do whatever it takes to look out for their parents. Nor were they motivated by hopes of an inheritance; three out of four said they would pay for a parent’s care out of their own pocket if necessary.

The not-so-good news: Most adult children haven’t spent much time thinking about any of this. In fact, almost three-fourths of the survey respondents said they didn’t have a plan for taking care of an aging parent. And about half had never even talked to their parents about the kind of care they want as they age.

This is no small issue. Middle-aged adults increasingly are caught between managing their own lives and caring for an older parent (and often looking out for their own children as well).

Some interesting statistics from a Pew Research Center report released in January:

- Nearly half of American adults in their 40s and 50s have a parent who is 65 or older, and about one in five provided financial support to an aging parent.

- The majority believed adult children have a responsibility to take care of their parents.

- Adult children are a leading source of emotional support as well as financial and practical help for older parents. Also, their responsibilities usually increase as their parents get older.

But as the Visiting Angels survey revealed, decisions about a parent’s living arrangements adds a whole new layer of issues. The survey found, for instance, that lack of room and lack of privacy were the two biggest concerns among adult children contemplating having a parent move in with them. Only 31 percent wanted their parents to move in with them, and four out of 10 said they preferred to have their parents remain in their own home with a caregiver.

The survey uncovered potential for conflict among siblings as well. When asked which of the adult children should have the most responsibility for Mom and Dad, here was the breakdown: Adult children who live closest to their parents topped the list, followed by the child perceived to have fewer other responsibilities, i.e. no spouse and/or children, and lastly by the child who was the most secure financially. (The survey didn’t ask whether adult children felt this was fair.)

In a final and telling statistic, close to half of the survey respondents anticipated some kind of conflict with a parent, a sibling or a spouse or significant other over decisions on how to care for an aging parent.

When AgingCare.com recently posed the question, “Do you regret the decision to have an elderly parent move in with you?”, there were more than 200 responses ranging from positive to frustrated to outright at-the-end-of-my-rope.

“Yes, I regret agreeing to move cross country, leaving my good paying job and becoming primary caretaker for my father-in-law. God help me, I am so looking forward to this being over,” one person wrote.

Someone else lamented how her parents took over the family’s life after moving into a specially built addition to her home. “What I forgot when we decided to let them live with us is that they have never had a respect for our privacy and my father and I have never gotten along,” she confessed.

Yet another commenter was enduring sleepless nights, wondering whether to have her mother move in with her. “If she lives here our lives will completely revolve around her,” she wrote.

But then there were responses like this one: “I love having my Dad live with me… When I was a kid, he worked all the time, so I missed out on a lot of time with him. Now I REALLY know my Dad, and he is a wonderful man.”

Many adult children seem realistic about the issues they’re likely to face as their parents grow older, even if they haven’t thought too deeply about it yet.

But if the survey results, and the voices of those who’ve already been there, are any indication, adult children ought to start thinking well ahead of time about the what-ifs. Too often, decisions aren’t made until there’s a crisis and everyone’s emotions are running high, says Larry Meigs, CEO of Visiting Angels.

His advice: “You need to meet now with your parents and siblings to decide on a solution that appeals to everyone involved.”

A clinician who looks like me

The face of America, and the people who seek health care every day at clinics, hospitals, urgent care centers and emergency rooms, is becoming ever more diverse. But you’d never know it by looking at the average U.S. medical school, where the faculty remains resolutely white and male.

The Association of American Medical Colleges recently examined this implicit bias in an article that takes a look at the situation and what medical schools are doing to cultivate a leadership that is more diverse.

It matters because when medical school leaders and faculty come from varied backgrounds, they bring a more inclusive approach to how medical students – the physician workforce of the future – are trained, Dr. Hannah Valantine, senior associate dean of faculty affairs at the Stanford University Medical School Office of Diversity and Leadership, told the AAMC Reporter recently.

“We are facing complex problems that will require diverse perspectives to solve,” she said. “The extent to which we can retain diverse faculty will drive our excellence in education, research and patient care.”

Disparities in health and in health care unfortunately are pervasive. They’re manifested in many ways: how people live, whether their environment is safe, whether they have access to health insurance and affordable care. At least some of the disparities, however, seem to be rooted in a health care system that doesn’t always recognize or appreciate the differences, both clinical and cultural, that make human beings so diverse.

Take, for example, a cardiovascular health initiative that was one of the topics of discussion last month at the 10th annual national summit on health disparities. The initiative, now in its second phase, is aimed at giving doctors more knowledge about treating minority patients and improving their cardiovascular outcomes.

Speakers at the event said physicians often are unaware of the nuances in treating patients of diverse ethnic and racial backgrounds, hence may fail to recognize heightened risk or important early signs of chronic disease. One of them is the so-called triglyceride paradox, or the fact that blacks can have high levels of high-density lipoproteins (“good” cholesterol) and low triglycerides yet still be at high risk of cardiovascular disease.

To what extent does the failure to see these nuances reflect assumptions that “every patient is like me,” i.e. white? Some studies have noted that black patients are referred for cardiac catheterization or bypass surgery less often than white patients, even when their symptoms are the same, which suggests at least some level of inequality.

“Clearly there is some subconscious bias that is going on,” Dr. Conrad Smith of the University of Pittsburgh Medical Center told MedPage Today last week.

Physicians need to be aware of the differences in how they approach patients of varying backgrounds and the impact this has on outcomes, Dr. Smith said. “The education of physicians is going to be paramount if we want to close that gap.”

This isn’t to say prejudice and discrimination are rampant among health care professionals. The vast majority are skilled and well-intentioned. Yet their training and background may not necessarily have equipped them to recognize their own assumptions.

Consider, for example, the implications this may have for conducting end-of-life discussions. Americans strongly favor telling the truth to patients when further medical care is futile; other cultures view this as harmful and believe the patient should not be told.

U.S. clinicians might become deeply frustrated, perhaps even angry, with immigrant or refugee patients who refuse testing and treatment for tuberculosis. What they may not understand is the stigma associated with TB in these cultures and differing practices in when and how medication is prescribed.

It’s not hard to see how misunderstandings can arise. Sometimes these spill over into the clinician-patient relationship, not only in how people communicate with each other (Do they feel their perspective is heard? Do they feel their values are respected?) but in the quality of care the patient receives.

Some studies have found that doctors relate better to patients when they share common ground, such as socioeconomic background – in other words, patients who aren’t perceived as “other.” These same studies also have found that when doctor and patient come from similar backgrounds, the doctor is more likely to take the patient’s symptoms seriously and more likely to trust that the patient will follow medical advice.

It argues that unconscious bias in favor of one’s own tribe is very real. It also argues for a better doctor-patient relationship and greater comfort level when an increasingly diverse patient population can receive care from someone with whom they identify.

That the health professions are having robust discussion about instilling diversity and cultural competency within their ranks is an indication of how much progress has been made in the past couple of decades. There in fact have been calls to broaden the definition of what constitutes diversity to include religion, gender identity and sexual orientation. In a newly published study, students in the medicine, physician assistant and physical therapy programs at the University of Colorado supported the value of an inclusive, respectful campus environment – but they also reported that disparaging remarks and offensive behavior toward minorities of all kinds continue to persist.

“According to these students, the institution must embrace a broader definition of diversity, such that all minority groups are valued, including individuals with conservative viewpoints or strong religious beliefs, the poor and uninsured, GLBT individuals, women and non-English speakers,” the researchers concluded.

Few people are without bias in some form and this goes for every walk of life, not just health care. The challenge lies in recognizing it and overcoming it so all patients get the care they need, even if the clinician doesn’t look like them.

There’s a health app for that… but will it help?

If you’re someone like Jared Sieling, you’ll track everything you eat for weeks and then pore over the data to uncover your nutritional shortcomings. Other self-trackers monitor their heart rate during workouts, log how many steps they take each day or chart how far and how fast they perform on their daily run.

Are these “elite livers”, as some of them call themselves, a standout example of highly engaged health consumers or are they just, well, obsessed? And where does the average person fit into this?

The rising popularity of self-tracking was explored recently by the Star Tribune of Minneapolis, where a Twin Cities Quantified Self meetup took place this month. Sieling told the newspaper that self-tracking has helped him zero in on where his health habits could improve – more protein in his diet, for instance.

Most Americans track their personal health in some way or another. We weigh ourselves on the bathroom scale, check our blood pressure with a home monitor or wear a pedometer to count how many steps we take each day. As athlete Erin Klegstad told the Star Tribune, “I just like to see the numbers and [it's] fun to watch it all. It’s taught me what my body can do and makes me push harder.”

But with the growth of hundreds of new apps, monitors and gadgets, self-tracking has reached a whole new level of data collection and analysis. Many people are starting to wonder: Are health apps really as beneficial as they’re cracked up to be?

Heart attack survivor and Heart Sisters blogger Carolyn Thomas attended a conference last fall in Silicon Valley, where she encountered a whole passel of mobile health app designers. All of them were convinced that technology is the answer to healthier living, but Thomas couldn’t help wondering if any of them knew what it’s like to be a real patient.

She writes:

It struck me that the imaginary patient using this technology wasn’t anything like me, or my readers, or most of the heart patients I meet or hear from or talk to on any given day. Instead, the patient that the hypemeisters talked about seemed to be some kind of fairy tale fantasy patient: tech-savvy, highly motivated, compliant, eager to track every possible health indicator 24/7, and most of all – oh, did I mention? – NOT SICK.

In other words, an apparent case of “healthy privilege,” or the tendency of the healthy to assume everyone else is like them, Thomas wrote.

Jessie Gruman, president and founder of the Center for Advancing Health in Washington, D.C., is recovering from stomach cancer and needs to eat something every hour, a task that takes time, planning and mental energy every single day. But when she downloaded a popular app to help keep a food diary, she found it was more time-consuming to use the app than to actually eat the food.

“I used the app for three days before I resorted to pen and paper,” she wrote a few months ago in an “Open Letter to Mobile Health App Developers and Their Funders.”

Gruman offers this real-life advice to the app people: 1. We will not use mobile apps that add to the time we spend caring for ourselves. 2. We do not respond well to nagging. 3. We favor apps that are linked to (or associated with) our clinicians.

There’s a big difference between those who use technology to track every aspect of their daily health and those who are living with chronic conditions and may not have the energy or commitment to use the technology in a meaningful way, Thomas writes.

“I do consider myself an engaged patient, but I do not own a smartphone, a 7-inch tablet, or an iPad – nor, as a person with a chronic illness living on a modest disability pension, could I afford them,” she writes.

Even the medical community is struggling to figure out the role that self-tracking can, or should, play in personal health.

Dr. Michael Joyner, a physiologist and professor of anesthesiology at the Mayo Clinic, told the Star Tribune of Minneapolis that the proliferation of health apps offers some hope for improving the management of chronic diseases. But at the same time, it’s possible to go overboard with detailed self-tracking, he acknowledges. “Are they living life or are they tracking life?”

Dr. Leslie Kernisan, who provides care for geriatric patients, recently pondered whether she should be prescribing apps – and if so, which ones?

Apps can be useful if they help patients meet their medical goals or provide information that’s clinically useful in some way, she wrote. “But I worry that we’ll end up making the same mistakes with apps as we’ve often made with the prescription of medications: recommendations based on marketing rather than thoughtful assessment of expected value, and prescription of apps for every little medical condition rather than choosing a few high-yield apps based on a whole-person approach to managing healthcare.”

Here’s some final food for thought: A 2011 consumer survey of smartphone users found that one in four health-related apps were used only once, and nearly three out of four were abandoned by the 10th use.

Are health apps mostly a niche technology for the worried well and the data junkies? Or do they hold some promise for real, live, actual patients in need of tools to help them manage their health in ways that are constructive rather than burdensome? At the moment, the answer isn’t at all clear.

When the doctor doesn’t like the patient

It was one of those honest admissions that usually go unvoiced: The doctor didn’t like the patient and felt pretty sure the patient didn’t like him either.

Their introduction didn’t go well and the relationship failed to improve during subsequent visits, Dr. Don Dizon, an oncologist, blogged recently at ASCO Connection. “As time passed, I resented having to see her and take care of her because despite what I perceived as my best efforts, I felt we had no real doctor-patient relationship,” he wrote.

But when he confessed to some of his colleagues that he disliked the patient, they were shocked that he would even say such a thing.

Do doctors have an obligation to like all their patients? Good question – and thought-provoking as well, judging from the amount of traction that Dr. Dizon’s blog entry gained online this past month and the comments it generated (here and here, for instance).

While many patients desire empathy (or, at the very least, some respect), it was clear from the comments that this isn’t the case for everyone.

“We are not teenaged girls and this is not Facebook,” was the response from one person. “I don’t care whether you ‘like’ me, any more than I care whether my plumber or pool guy ‘like’ me. Just do your job.”

It’s about the clinical care, not about who likes or dislikes whom, wrote someone else. “Put aside your ego, do your job, stop labeling and move on.”

The online discussion raised another question: Is it fair for doctors to want all their patients to be likable? “It can be a significant burden to have to be the doctor’s buddy and entertainment when feeling awful,” one person pointed out.

This whole issue of likable vs. non-likable patients (or, put another way, “good” vs. “bad” patients) is one that’s received considerable study. People who work in health care encounter all types of personalities, backgrounds and preferences among their patients, and they often see patients at their worst. Because health care essentially comes down to a transaction between human beings, how clinicians perceive their patients, and vice versa, inevitably becomes part of the equation.

Research seems to support that the quality of the doctor-patient relationship indeed makes a difference. One rather disturbing study, conducted in Canada a couple of years ago, found that doctors tended to underestimate the severity of pain in patients whom they disliked.

There also seem to be expectations on the part of clinicians for what constitutes a “good” (read: “likable”) patient. The Medical Dictionary, for example, defines it this way:

A patient who:

1. Provides reliable history and information.

2. Follows the prescribed regimen, drug therapy, or recommended change in lifestyle, if appropriate for the patient’s condition.

3. Reliably returns for check-up visits at appropriate intervals.

Being likable or agreeable doesn’t always benefit the patient’s care, however, especially when patients don’t speak up because they fear the doctor won’t like them for doing so.

The challenge, it seems, is how to manage the doctor-patient encounter without letting likes or dislikes become personal or dominate the relationship.

So how did Dr. Dizon work through his dislike of this particular patient? Ultimately he came to the realization that it’s OK for doctors to own their feelings and not feel compelled to like every patient they treat, he wrote. Nor did the patient have a duty to like him in return.

“It dawned on me that I was working so hard to make her like me (and vice versa), that it was affecting my ability to care for her,” he wrote. “Once I admitted to myself that it was okay to not like a patient, I was able to do what she wanted me to do – to be her doctor.”

The EHR: Love it, hate it; here to stay

In a world where information technology is inextricably entwined in how we live (when was the last time you spent more than 24 hours without online access?), it’s often baffling to see how slowly health care has embraced all things digital.

To be sure, most hospitals and medical groups are making progress. A majority of physicians now have the ability to e-prescribe, and it would be hard to find a health care organization that doesn’t use or store at least some patient information electronically. On the whole, however, there’s a long road ahead for many organizations to reach the nirvana of a fully integrated electronic health record that incorporates both clinical and billing information, allows information to be exchanged between providers and organizations, and makes the fullest use of technology to enhance care.

It prompts the question: Why?

Because adoption of an electronic health record system is neither simple, straightforward nor cheap, that’s why. It demands a major commitment from health care organizations – a commitment, moreover, that tends to be mostly invisible to patients and the public and may not offer an immediate payback.

The challenges of EHR implementation emerged in the details I learned while talking to staff at Rice Memorial Hospital here in Willmar about the hospital’s conversion to Epic last year.

Going live with the new system, which replaced six disparate health information systems across the hospital, involved a $4 million investment, a full year of planning and countless hours of training before flipping the switch on Feb. 1, 2012. One year later, Rice still has lots of work ahead to optimize the system and reach additional milestones that will qualify the hospital for the next stage in federal meaningful use criteria.

The hospital is starting to see some of the benefits – no more chasing down of paper charts, for one. But it’s not hard to realize why many health care organizations would hesitate to dive into EHR adoption when they know how time-consuming and resource-intensive it’s going to be.

Indeed, clinicians and health care leaders are often ambivalent over whether the EHR is an enhancement to patient care or an invention of Satan.

Consider the responses to a recent blog entry by Dr. Robert Wachter, one of the leading voices in the U.S. for patient safety, about the federal HITECH program to promote the use of information technology in health care.

Doctors used words such as “tedious” and “akin to torture” to describe their experiences with the EHR.

“My role anymore is about 50% practicing medicine and the rest being a data entry clerk,” one commenter complained. “It has overall decreased my efficiency rather than increased it. I really like some aspects of it such as drug interaction warnings and clinical reminders. There’s a lot I don’t like.”

From someone else: “Most of American medicine is not done in large clinics or hospitals with their own in-house IT staff and the burden on the rest of us has been near intolerable.”

Earlier this year the American Medical Association sounded an alarm over the federal push toward higher and higher levels of meaningful use, warning that it may be too much, too fast for many providers, especially in view of issues with software design and usability that haven’t been fully resolved yet.

There’s emerging evidence that although some aspects of the EHR are safer, such as replacing handwritten physician orders with computerized physician order entry, the technology also has introduced new potential for other types of errors. Although patient portals are part of the meaningful use requirements and are meant to encourage more engagement by patients, they tend to contain limited information, and organizations are beginning to find that the mere presence of an online portal does not mean patients will actually use it.

So what’s the good side?

A growing body of research confirms the benefits of information technology in making health care safer and creating new opportunities for mining health data to improve care. A survey last year of physicians found that the majority had few complaints about using an EHR and most also felt it helped make their practice more efficient.

Here’s what Dr. Wachter has to say to the critics:

Let’s pause to ask a few questions: Does anyone honestly believe that computerizing American healthcare is wrongheaded? Or that the correct strategy was to continue toe-tapping, waiting for “the market” to promote IT adoption when, in 2009, only 16 percent of US hospitals and doctors’ offices had functioning clinical IT systems? Or that they would like to be a patient, or a clinician, in a paper-and-pencil hospital?

I didn’t think so.

Love it or hate it, the electronic health record is clearly on its way to becoming a permanent part of the health care landscape. The challenge, it would seem, lies in constructively addressing the vulnerabilities of the EHR, supporting organizations through the transition, using feedback from clinicians to make EHR systems better, and trying to eliminate some of the pain inherent in the process so the electronic health record can begin to deliver all that its supporters have promised.

Do we need another patient survey?

Many patients – well, some of us, anyway – appreciate being asked for feedback about their experiences with the health care system.

After all, it wasn’t long ago that patients’ opinions were rarely sought. Now they’re being queried about everything from whether their hospital room was clean to how quickly the nursing staff responded to their pain.

When analyzed in ways that are accurate and meaningful, patient surveys can provide health care organizations with a reality check on what their patients really think about the care they’re receiving. Is there consistently negative feedback about inattentive staff or awful parking? Maybe it’s a sign that these need to be addressed. Consistently good feedback, on the other hand, is a strong indication of an organization that gets a lot of things right about the patient experience.

It may be time to ask, however, whether patient surveys have crossed the line into overkill.

The American Hospital Association recently said “enough already” to a plan by the Centers for Medicare and Medicaid Services to add two new types of patient surveys, one for hospital outpatient surgery departments and the other for ambulatory surgery centers.

In a four-page letter, the hospital association asked CMS to reconsider, saying the Consumer Assessment of Healthcare Providers and Systems program already includes multiple and overlapping surveys. Adding even more will likely lead to confusion among patients, the AHA contended. It’s possible, for example, that ambulatory surgical patients could receive as many as three similar surveys for the same episode of care, the AHA said.

There’s also the administrative burden of administering all these surveys and compiling and analyzing the results, the hospital association pointed out.

The AHA’s suggestion: Instead of developing separate new surveys for outpatient and ambulatory surgery patients, why not just add some supplemental questions to existing survey tools and be done with it?

If you listen closely to health care providers, you can sense the creeping onset of survey fatigue.

“Hospitals and doctors, unaccustomed to being rated and ranked like resort hotels and American Idol contestants, are suffering from performance anxiety and feeling an intense desire to be left alone,” observes Dr. Robert Wachter in a recent blog post that asks an important question: Do surveys and rankings really help improve care?

The answer seems to be both yes and no.

Poor survey results can penalize providers for factors that may be outside their control – for instance, hospitals that have large numbers of patients living in poverty, Dr. Wachter writes. Moreover, surveys sometimes apply inaccurate yardsticks or measure the wrong thing altogether, hence severely limiting their usefulness.

On the other hand, a disappointing ranking might be the motivation a health care organization needs to get serious about improving its performance. And consistently good ratings don’t tend to happen by accident; usually they signal organizations that are higher-performing.

How to reconcile these two opposites? Dr. Wachter writes:

Public reporting of quality measures not only improves the work of the measured, it improves the work of the measurer. Ultimately, a healthcare ecosystem in which reasonable measures help guide patient and purchaser choices will lead to improvements in both the quality of care and of the measures themselves. I believe we can look forward to an era of more accurate measures, measures that capture the right things (not just clinical quality but teamwork and communication skills, for example), and measures that are less burdensome to collect and analyze.

By all indications, we aren’t there yet.

Surveys that ask patients for feedback are just one piece in a larger picture that also tracks how providers are doing on key measures such as recommended immunizations and screenings, hospital-acquired infection rates and use of best practices in managing diabetes, congestive heart failure and more. Even patient surveys, however, don’t necessarily produce reliable information.

The American Hospital Association’s letter to CMS points to new research suggesting that how patients fill out surveys may be more related to patient characteristics than previously thought. The AHA cites an analysis by the Cleveland Clinic that found that when patients were sicker, patient satisfaction scores tended to decline. The researchers found the same thing among patients who were depressed.

Other studies have discovered that when patients feel strongly about the care they receive, they’re more likely to fill out and return a survey. Research also has found that even seemingly minor factors such as geographic region and time of the year can have an influence on the answers patients are likely to give on a patient satisfaction survey; Midwesterners seem more willing to give higher marks to hospitals than patients on the East Coast, and scores overall tend to decline slightly during the winter months.

It’s not clear what to make of all this information, nor how to use it effectively. Throw clinical measures into the picture and it becomes even more complex. Do we really need more patient surveys? Maybe what’s needed are better, more reliable measures and better ways of interpreting and understanding the data already being collected.

My weekend as an emergency patient and what I learned

If you want to see what health care is really like, there’s no better way than by becoming a patient yourself.

To paraphrase the wisdom of Dr. Seuss, “Oh, the things you’ll learn!”

The truth of this was recently hammered home for me during a weekend in the hospital that started with a Friday night trip to the emergency room, devolved into IV antibiotics, painkillers and surgery, and ended in a (minor) complication that luckily resolved on its own.

Who doesn’t benefit from undergoing a reality check every so often? It’s safe to say I encountered some old lessons that were reinforced and some “Aha!” moments that were new.

Here are a few of them, in no particular order of importance.

- Most of us pay no attention to our gallbladder until it unexpectedly stages a major rebellion. Then we notice very much indeed, especially when it becomes gangrenous.

- The word “patient-centered” can be rather nebulous. What does it mean, anyway, and how do you know patient-centered care when you see it? Here’s a clue: When the emergency room staff’s immediate response is to deal with your medical situation and worry later about seeing your health insurance card, that’s patient-centered.

- People in health care work really, really hard – days, evenings, nights, weekdays and weekends. It can be easy to judge their efforts by the amount of time they directly spend with you, the patient, but this is only the tip of the iceberg.

What you don’t see is the amount of time spent assessing the patient’s situation, reviewing lab results, communicating with the rest of the team, scheduling procedures, making decisions, following safe, evidence-based practices and documenting everything accurately in the medical record. When the behind-the-scenes action is done well, you likely are receiving better care and will have a better outcome, even though most of the work on your behalf will never be visible to you.

- When it’s your health at stake, it’s hard to be objective about costs. The effort has to start somewhere, though. Although physicians have a responsibility to avoid potentially harmful and expensive overtesting and overtreating, this is a two-way street. It needs to be OK for the doctor to say, “We’re not doing a CT scan because it’s unnecessary” and not meet with instant backlash from the patient. It needs to be OK for patients to let go of the I-want-you-to-do-everything security blanket and not fear they’re receiving substandard care. In health care, more does not automatically mean better.

However:

- Cost can’t be the sole consideration. Sometimes it’s OK to delay care and sometimes there’s a less expensive option. But sometimes the patient needs immediate care and sometimes the care needs to be aggressive. This, rather the goal of simply being as cheap as possible, is the real challenge in health care: providing the right care at the right time, not too much, not too little, not too soon and not too late.

- It’s good to ask questions but patient engagement is much more than this. It’s about listening, absorbing information, understanding how and why key decisions are being made, and seeing the big picture. It’s about communicating clearly and accurately. It’s about following directions. This is complex stuff, and a sudden hospitalization is not the best time to try to learn the language and behavior of patient engagement. Far better to start cultivating some of these skills when you’re well, rather than in the middle of an emergency.

- Who wants to be the patient who arrives at the emergency room and is forced to say, “I don’t have one” in response to the question, “Who’s your regular doctor?” You can probably get by, but your hospital visit will likely go more smoothly if you have a primary care doctor who knows you – or, at the very least, if you have a usual source of care.

- Being sick and hospitalized is disruptive, to families as well as to patients. It upsets the normal routine and adds unexpected stress. It can take several days, or several weeks, for everyone to regain their equilibrium. What patients and families don’t need is more frustration from a health care system that’s cumbersome, confusing to negotiate or slow to respond. Organizations that work to minimize this for patients are doing them a favor.

- Health care is organized around systems but it’s delivered by individuals and reinforced by organizational culture. Every one of those interactions counts, and every one of them helps define the line between having a good experience and having a bad experience. This is your shout-out, Rice Memorial Hospital and Affiliated Community Medical Centers, for knowing where that line should be. Bad experiences don’t happen by design but good experiences rarely happen by accident.

Additional reading: Choosing Wisely; Image Wisely; Costs of Care; Center for Advancing Health; minimally disruptive medicine.