Defining patient engagement

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.

Getting emotional about mistakes in care

When patient safety is compromised, clinicians often react with guilt, frustration, embarrassment and sometimes anger. Even when the incident is minor, or when the patient wasn’t harmed at all, it’s common for people’s emotions to get involved and for them to sometimes have trouble coping, a new study has found.

The research was carried out in Canada and appears in the latest issue of the Journal of the American Board of Family Medicine.

Although there’s increasing recognition that caregivers often become the “second victims” after a patient is harmed, few studies have attempted to systematically examine how they feel and how they respond, especially in the medical office setting. Using a confidential questionnaire attached to incident reporting forms for a regional community practice medical safety program, the Canadian researchers collected data from physicians, nurses, managers and office staff at 19 family medicine practices in Alberta.

Here’s what they found:

– Across the board, frustration was the most common emotional response to a patient safety incident. It was reported by 48.3 percent of the respondents. About one in three also reported feeling embarrassed, 12 percent said they were angry and 10 percent felt guilty.

– Whether the safety incident was minor or serious didn’t seem to matter. Most caregivers and office staff reported some kind of emotional reaction when something went wrong or when there was a close call.

– The emotional impact was greater when the patient was harmed or when there was a possibility the harm was more than temporary.

– About 63 percent of the respondents reported using a coping strategy to deal with their feelings after an incident. Their most frequent response was to talk to someone else about it. But more than one out of three said they did nothing, and only 17 percent said they told the patient.

– Of note, the physicians in this study were more likely than the rest of the clinic staff to have an emotional reaction to an incident, and were also less likely to use a coping strategy in the aftermath.

Although this was a small study, one of its strengths is that it was based on real-life incidents and how people responded to them, rather than asking for their response to a hypothetical situation. It also captured the smaller-scale mistakes and miscues that can happen in daily office practice – losing or misfiling a patient’s lab report, for instance – where most patients receive the majority of ongoing care.

Most of the patient safety incidents involved in this study were in fact relatively minor, which might account for why frustration, rather than guilt or blame, was the dominant emotional reaction. Other studies have found that anxiety, shame, self-doubt and self-blame are often part of the doctor’s response to a medical mistake – but these studies generally focused on how doctors felt about the worst or most memorable mistakes of their career, rather than the daily ups and downs of primary care.

It’s a side of office medicine that most patients don’t see. Many might not even realize it exists. But whether patients are aware of it or not, it has an impact on care, the study’s authors wrote.

When clinic employees, and doctors in particular, don’t have good coping strategies for dealing with mistakes, they’re at greater risk of burnout and depression, the authors wrote. It also can become a missed opportunity for personal and organizational learning.

“All members of the health care team report experiencing emotions related to patient safety incidents in their practice,” the researchers wrote. “Incidents with minor or no harm still invoked emotional responses from the providers. It is important to understand the impact that patient safety incidents have on the medical clinic as a whole.”

The decline of empathy

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

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.

Look alike, sound alike… aren’t alike

The doctor’s handwritten order was for Provera, a progestin hormone that helps regulate the female menstrual cycle. But a pharmacist misread it as Prozac, an antidepressant – and that was the drug given to the patient until the next day, when the mistake was discovered.

When the order was shown afterwards to several pharmacists, nurses and doctors, they all had trouble reading it. One person thought it was for Proscar, which is used to treat benign enlargement of the male prostate.

This case study, which appeared in a recent quarterly publication of the Institute for Safe Medication Practices, could serve as a good example of the confusion – and possible harm – that can result from handwritten drug orders. But it’s also an example of something else: the proliferation of look-alike, sound-alike drug names and the potential this carries for making mistakes.

A recent commentary in the International Journal of Clinical Pharmacy tackles this long-standing issue by talking to quality and safety experts who outline the extent of the problem and identify a number of best practices that help reduce the risk of confusion. Eliminating handwriting in favor of computerized order entry is one solution, obviously, but the problem goes deeper than this.

There are many, many drug names, both brand and generic, that are similar to each other. The ISMP has compiled an eight-page list of look-alike, sound-alike pairs involved in errors reported to its National Medication Errors Reporting Program, and it’s a little frightening to see how many opportunities there are for mix-ups to occur.

Actonel vs. Actos, for instance. Adderall and Inderal. Fioricet and Fiorinal. Oracea and Orencia. Precose and Precare. Xanax and Zantac. Some are a triple-header: Celebrex, Celexa and Cerebyx.

All told, about 1,500 drugs have names that look or sound similar. By all accounts, errors associated with look-alike, sound-alike drugs that actually reach the patient aren’t common; mix-ups are thought to happen with fewer than 1 percent of the 3.9 billion prescriptions dispensed annually at U.S. outpatient pharmacies. This still equates to thousands of individuals, however, and sometimes the results are lethal.

As the journal commentary explains, issues such as distractions, interruptions, worker shortages and the fast pace behind the pharmacy counter all contribute to the risk of mistakenly dispensing the wrong drug. But it surely doesn’t help when so many drug names look alike and sound alike. To compound the problem, many drugs also come in look-alike packaging.

One solution would be for manufacturers to choose drug names that are less likely to be confused. After reports that Kapidex, a drug approved in 2009 to treat heartburn, was being confused with Casodex, which is used to treat prostate cancer, the company renamed the drug at the request of the U.S. Food and Drug Administration. Unfortunately there are still hundreds of older drugs on the market with look-alike, sound-alike names that are unlikely to be changed without creating a whole new source of confusion. Nor is the problem limited to brand names – for example, sulfadiazine, an antibiotic, has an extremely similar generic name to sulfasalazine, a drug used to treat ulcerative colitis.

Other strategies include the use of “tall man” lettering to draw more attention to the dissimilarities in drug names that otherwise look and sound alike. Studies have found this helps reduce the possibility of errors. But it’s only a partial fix to a complex problem.

Where do patients fit into this? Most mix-ups involving look-alike, sound-alike drugs happen at the prescribing or dispensing level, so the role of patients in catching mistakes is often overlooked. But there are a handful of things the consumer can do that would help.

Know both the brand name and generic name of the medications you’re prescribed, and how they’re spelled. If necessary, ask someone to write it down for you. If it’s a medication you take often, know what the pills are supposed to look like. Every time you get a prescription filled, check the label on the bottle to make sure the name is correct, and look inside to make sure the pills are the right color and shape. (At my pharmacy, the label includes a description of what the pills are supposed to look like, e.g. round pink tablet with “20” inscribed on one side.)

Finally, know what you’re taking the medication for. If you know the purpose for your Zantac prescription is to treat heartburn or reflux disease, you’ll be more likely to notice if your prescription has been inadvertently filled with Xanax, an anti-anxiety medication.

What do patients want, anyway?

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 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.


Online doctor reviews: not ready for prime time yet

It sounds like a useful idea: online ratings that help consumers sort through their choice of doctors and pick the one who’s the best match.

In real life, though, the concept doesn’t seem to have flourished as well as expected. An intriguing piece published this past weekend in the New York Times explores why this would be the case for what writer Ron Lieber calls “the highest-stakes choice of service provider that most people make.”

Litigation is one obvious concern. Patients don’t want to be sued for posting an online review that may be negative. In case you think this would never happen, think again: A Duluth, Minn., man was sued by a neurologist after making critical comments on three consumer rating sites about the doctor’s bedside manner. The case was thrown out by the St. Louis County District Court but the Minnesota Court of Appeals ruled this January that a jury should be allowed to decide.

Sometimes patients worry their anonymous comments will be recognized and that there’ll be retaliation in some form, Lieber wrote. He spoke to an Angie’s List customer who “said she would never talk negatively about her doctors on the site because there were only two decent hospital systems where she lived and she didn’t want to end up blackballed by doctors at either.”

The biggest issue I’ve seen, however, is that most of the online rating sites simply aren’t that robust. I’ve browsed through RateMDs, which purports to have more than a million consumer-written reviews of physicians in the United States and Canada. A search for Minnesota physicians revealed very few reviews for any doctors outside the Minneapolis-St. Paul area and most of the doctors had fewer than five reviews posted for them – not a particularly strong sample size and not very useful if you don’t live in the metro area.

And what should the average doctor-shopper make of comments such as “Best pediatrician I have ever encountered!” or “not helpful, bizarre comments and behavior”? Without context, it’s difficult to judge, making the value of many of these reviews limited at best.

Certainly there are more objective rating sites online – for instance, HealthGrades, which provides information on both physician and hospital quality. But again, most physicians outside the metro area have only a small number of reviews, or none at all. (I also noticed the lists don’t seem to be updated when doctors retire or leave the community. How would someone who’s new to town and in search of a doctor be expected to know this?)

Nor are most of the online rating sites very helpful when it comes to judging physician quality on the basis of outcomes or best practices. Here in Minnesota, Minnesota Community Measurement seems to come the closest to reporting how medical practices stack up overall in outcomes and the use of evidence-based medicine. But either I’m a klutz or the site is overly cumbersome, because I’ve found it difficult and time-consuming to truly use effectively. And although it could probably guide consumers to a quality medical clinic, it doesn’t really help them choose an individual doctor, a decision that often comes down to personal values, preferences and communication styles.

Studies examining actual consumer use of online rating sites are rather thin on the ground. One survey, conducted in 2008 by the Center for Studying Health System Change, found that only about 10 percent of the 13,500 adults who were queried turned to an online rating site to help them find a new primary care doctor. The majority relied on old-fashioned word of mouth from family and friends.

What’s a consumer to do? Lieber writes:

Until a single one-stop shop exists for both reviews and data that are fair and useful, we are left with one another. The problem with asking friends for a doctor recommendation is that even if they are a lot like you, they may not have any idea whether the doctor is a good clinician or not.

Careful readers can probably find some sites with listings for certain doctors that in number and detail add up to a useful measure of many of their skills. But you may not know anything about whether the reviewers are people similar to you.

In light of all this, it’s curious to see policymakers continuing to forge ahead with all kinds of online data, from hospital performance to outcomes to patient satisfaction. Not that the trend isn’t welcome; we need more – not less – data and public reporting. Sharing the data is no guarantee, however, that consumers will be able to use it effectively, or indeed whether they’ll use it at all. It seems that in spite of all their promise, the online rating sites still aren’t quite ready for prime time.

The medicalization of grief

Is grief part of the normal human experience, or is it a “problem” in need of fixing?

When the fifth edition of the Diagnostic and Statistical Manual, the so-called Bible of mental health disorders, is published next year, it more than likely will contain major revisions in how some conditions – personality disorder, for instance – are defined and diagnosed.

Of all the revisions that are under review, few have been more intensely debated than the one that would add complicated grief to the list of major depressive disorders and that would allow depression to be diagnosed within two weeks of a loss.

Will it mean that millions of bereaved individuals will be labeled with a mental disorder simply because they’re grieving? Many say this could be exactly what happens.

The discussion boiled over this month with a blog entry by Dr. Joanne Cacciatore, a researcher at Arizona State University and founder of a nonprofit group for grieving parents. The proposed revision – especially the two-week time frame – would have the effect of “further pathologizing the authentic human experience of sorrow,” Dr. Cacciatore wrote. “So, a person may, at the discretion of a psychiatrist, social worker, or psychologist, be categorized as ‘mentally ill’ as soon as two weeks following the death of a loved one.”

Bereavement isn’t a state that can be healed with pills or therapy, she writes. “If we wish, as a society, to truly help those suffering in the aftermath of loss, then we must make the move toward collective compassionate and open hearts. Systems of ‘care,’ HMOs, hospitals, and evidence-based practice manuals will not help heal others.”

There isn’t always a clear line between grief and depression. Often they resemble each other, and at times they may overlap. But how much of this is normal and how much should be considered “disordered”?

In a statement issued in response to the uproar over the DSM-V’s proposed handling of grief, Dr. Kenneth Kendler, a member of the work group on mood disorders, offers a perspective on where the dividing line might lie:

… The vast majority of individuals exposed to grief and to these other terrible misfortunes do not develop major depression. That does not mean, and here is the source of much confusion, that they do not grieve. They do. It does not mean that they do not feel terrible pain and loneliness. They do. Depression is a slippery word and we are so used to using it to mean “sad”, “blue”, “upset” or, in this specific case, “grieving.” Major depression – the diagnostic term – is something quite different.

How much of this debate is rooted in a broader cultural aversion to grief, loss and suffering and a belief that it’s somehow better for bereaved individuals to blunt their pain with medication or therapy? A mother who lost her firstborn son to stillbirth had this to say in response to Dr. Cacciatore’s blog:

“there are some things in life we just need to FEEL with every nerve ending (physical and emotional), no matter how much it hurts. that’s the only way to get through it, come to terms with it, and learn to live with it.”

For some people, grief can indeed become so prolonged or intense that it interferes with their ability to function. These individuals may need help but it doesn’t necessarily mean they’re clinically depressed – or, more to the point, that they should be treated the same way as someone with depression, argue Dr. Allen Frances, a professor emeritus at Duke University who chaired the DSM-IV task force, and Dr. Holly Prigerson, a Harvard psychologist who specializes in grief.

Although it’s possible for someone with prolonged grief to also have major depression, the two conditions aren’t interchangeable, Dr. Prigerson explains. “In the context of bereavement, survivors are likely to experience symptoms of both depression and grief. But the characteristics that define an orange, or grief, are not the same as those that define an apple, or depression.”

Dr. Frances concludes: “It is important to respect the legitimacy of all forms of grief, but also to provide a helping hand to those who need it.”

What do readers think about the DSM-V proposal? Does it medicalize normal grief? Will it help bereaved individuals experiencing prolonged or severe grief?

Dreading the colonoscopy

For most people, having a colonoscopy holds only slightly more appeal than, say, having their teeth gouged out one at a time with a rusty chisel.

So I was rather bemused when AmSurg, a for-profit ambulatory surgery company, emailed me a link last week to a new YouTube video, praising the colonoscopy experience as “not that bad.”

Cheesy soul singer and a trio of women in silver miniskirts – what’s not to like? Oh, wait. Colonoscopy.

Few people would argue that the colonoscopy isn’t a valuable screening and diagnostic tool. Indeed, a brand-new study published a couple of weeks ago in the New England Journal of Medicine confirmed this: It concluded that when colonoscopies are performed and precancerous polyps in the colon are detected and removed, the death rate from colorectal cancer is reduced significantly.

In view of this compelling evidence, it’s unfortunate that colonoscopy is lumbered with so much negative baggage.

Many of the people who posted at about their colonoscopy were ambivalent or found the experience downright miserable. “The most painful experience I have ever had and would not go back,” wrote one person. “Painful” and “degrading” was someone else’s assessment. Another commenter found it assaultive and reported waking up from the anesthesia several times during the procedure. “I hate that I will have to get this again eventually, and I will only consent because I want to keep myself as healthy as possible to be around for my kids, but I dread it and wish I didn’t have to,” she concluded.

The medical community acknowledges there are plenty of barriers to discourage people from undergoing a colonoscopy, especially routine screening colonoscopies in those who are otherwise healthy. When a group of Australian researchers reviewed a collection of more than 50 previous studies on patient attitudes toward colonoscopy, they found the laxative bowel preparation was “the most burdensome part” for most people. Anxiety, embarrassment, worries about pain, and fear of finding cancer also were reported as significant issues. The findings were published last month in the Patient Education and Counseling Journal.

Other studies have noted practical concerns as well. One of them is lack of health insurance. Scheduling and logistics also can be a problem; the anesthesia requires not only taking a day off work for the working-age population but also someone to accompany them and drive them home after the procedure.

Add it all up and it’s not particularly surprising that adherence to colonoscopy screening guidelines in the U.S. – recommended for adults between the ages of 50 and 75 – is less than ideal. According to recent figures from the Minnesota division of the American Cancer Society, one in three Minnesotans who are 50 and older have never been screened. Nationally, about four out of 10 adults aren’t up to date on the screening.

Is there a way to improve this? Maybe getting rid of some of the myths surrounding the procedure would help, suggest the folks at Providence Cancer Center of Oregon and Washington. The prep is short-lived, the procedure is done under anesthesia and most people only need to take a couple of days off work, they explain. Their advice: “Get over it, please – and get screened.”

It should be pointed out that colonoscopy does carry some risk of complications. Bleeding and perforation can occur, and some people may become ill from the prep. Serious complications don’t appear to be common, however; one study put the incidence at about 5 per 1,000 procedures.

For what it’s worth, many people who undergo the procedure discover it wasn’t as bad as they thought it would be. Still, it’s not hard to see why the colonoscopy is heartily disliked or why patients would balk at having one. There’s ongoing research on alternative, less invasive screening methods such as virtual colonoscopy, but to date none of them have been shown to be as reliable or effective as the standard colonoscopy. Until we can come up with something better, the dreaded colonoscopy is the best we have.

Sleepy – and dangerous – behind the wheel

In May 2011, a charter bus traveling on Interstate 95 from North Carolina to New York City left the road north of Richmond, Va., at 5 a.m. and rolled over while the passengers inside screamed in fear. Four people died and several others were injured.

The driver reportedly had fallen asleep at the wheel. Surviving passengers later told law enforcement officials they saw him gulping down energy drinks and coffee to stay awake.

Many Americans struggle with drowsiness behind the wheel but the stakes are especially high for pilots, train operators and bus, cab and limo drivers, many of whom experience sleep-related problems with job performance and safety.

Just how unsafe this can be is outlined in the National Sleep Foundation’s new “Sleep In America” poll, which examines those who work in the transportation industry.

The findings are sobering. Of the 1,087 transportation workers who were surveyed, one-fourth of train operators and pilots admitted that sleepiness affects their job performance at least once a week. About one in five pilots said they had made a serious error due to sleepiness. Eighteen percent of truck drivers and 6 percent of train operators reported experiencing a close call because of sleepiness.

More disturbingly, many of them said their work schedules didn’t allow enough time for sleep. The problem was worst among pilots and train operators, especially those who worked varying shifts and/or had minimal time off between shifts.

Transportation professionals also were more likely than people in other professions to take naps. For instance, 58 percent of the pilots and 56 percent of the train operators who participated in the survey said they napped at least once during the work day, compared to 25 percent of non-transportation workers.

Given the amount of research confirming the importance of adequate sleep for overall health and functioning, it’s dismaying that sleep deprivation continues to be such an issue. According to the National Highway Traffic Safety Administration, drowsiness is a contributing factor to thousands of crashes each year but it often goes underrecognized and underreported, perhaps because it’s more difficult to objectively determine than impairment due to alcohol consumption.

There’s enough data available to predict, however, who’s most likely to be at risk of dozing off behind the wheel. Sleep loss and untreated sleep disorders such as obstructive sleep apnea are two big factors, as are the use of alcohol and/or sedating medications. Driving between midnight and 6 a.m. and driving for long periods of time without a break also can predispose drivers to drowsiness.

Specific population groups that seem to be most are risk are young adults ages 16 to 29, especially men; drivers with untreated sleep apnea syndrome; and shift workers whose sleep often is disrupted by irregular hours or working at night, a category that frequently includes transportation workers.

Some of these risk factors are difficult to modify. The transportation industry can’t simply shut down at night, and many airline flights or over-the-road truck trips can’t be shortened.

Other risks can be reduced – resting before or during a road trip, for instance, or seeking a medical evaluation if sleep apnea is suspected.

Sleep researchers say the transportation industry also can do more to accommodate the sleep needs of workers and promote alertness on the job. “Employers should put more effort into designing work/rest schedules that facilitate sleep and minimize workers’ exposure to irregular, variable schedule changes,” Patrick Sherry, a sleep researcher and professor with the University of Denver Intermodal Transportation Institute said in a news release accompanying the Sleep in America” poll.

How drowsy are you during the daytime? Find out how you score on the Epworth Sleepiness Scale, an assessment often used by doctors to test sleepiness. Those who score high on the scale should talk to their doctor about their sleep problems.

Photo: Wikimedia Commons