Why I won’t be watching ‘Weight of the Nation’

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Count me out of the audience tonight when “Weight of the Nation,” the much-anticipated HBO documentary about obesity in the United States, makes its television debut.

If the trailers and pre-show publicity are any indication, “Weight of the Nation” stands a good chance of further fueling the stigma, stereotypes and alarmism about being fat, and ultimately doing little to solve the crisis it purports to address (although I hope I’m wrong about this).

Others have articulated this far better than I can. Here’s Fall Ferguson, a health educator with a law degree, with a list of 10 reasons to be concerned about the potential messages behind the HBO documentary.

Some excerpts from the list:

10. The misguided focus on obesity. The series identifies weight as “the problem” when the focus of our public health efforts should be health promotion and the prevention of chronic disease.

9. The appeal to fear. The publicity for the series (and I am guessing the actual documentary itself too) uses fear as a means of persuasion and motivation for change. Few things are as destructive to health and well-being as fear. I also question whether health professionals who use fear to influence people are behaving ethically.

8. Disservice to thin people. Thinner people may get the message that their lower weight means they don’t need to take care of their health or be concerned about preventing chronic diseases.

There’s more. Ferguson questions the message the documentary may send to children. She’s concerned it’ll add to the stigma that already surrounds being overweight or obese. She worries that the documentary won’t include alternative points of view or recognize the issues of body shame and eating disorders in the U.S.

The final point on her list? That “Weight of the Nation” will serve to escalate the cultural war on obesity while sidestepping a more critical look at how we frame this national conversation. “As a fat person, I am tired of being engaged in a war that I didn’t start and that uses my body as cannon fodder,” Ferguson writes. “As a health educator, I deplore the damage done to people’s health and self-esteem by our cultural war on obesity and I deplore the misinformation about health that masquerades as ‘public health messaging.’”

None of this is to say we shouldn’t be concerned about the quality and amount of food we eat or the environment we live in. We ought to be concerned because all of these things do matter to health. It’s frustrating to note, however, the way the message is so frequently shaped: that it’s all about the numbers on the scale and that if people could only lose weight, they would be healthy and their problems would be solved.

Here’s something else to think about: Has the war on obesity become so shrill that it’s counterproductive? A provocative new article by science writer Sharon Begley suggests it has. She writes that as long as we continue to stigmatize fat people and blame them for their weight, we’ll make little progress in more substantive changes such as altering the environment – and we’ll probably make the situation worse for fat children and adults.

Is it time to reframe the conversation? Perhaps so, because the current conversation doesn’t appear to be resulting in much progress. Maybe it’s time to recognize there’s more than one way of talking about obesity and that there are alternate points of view that ought to be heard.

Update: Read more from reviewers who posted today about “Weight of the Nation:” Mary McNamara, television critic for the Los Angeles Times: “Weight of the Nation” pounds away at obesity; Michele Simon at the Huffington Post, More empty recommendations on junk food marketing to children; Tom Conroy, Media Life Magazine, “The Weight of the Nation,” weighty; NPR, Pounding away at America’s obesity epidemic.

Making the investment in maternal health

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In between shopping for a Mother’s Day card for my mom and browsing my recipe collection for a nice dessert to make for her this weekend, I came across Save the Children’s annual State of the World’s Mothers report.

The report delivers a cold, hard dose of reality about what motherhood means for many women worldwide: difficult, risky and uncertain in outcome. Health, education and economic indicators were analyzed for 165 countries with the following results: Norway was ranked the best nation in the world to be a mother; Niger was the worst. The United States? It ranked 25th among the 43 developed nations that were included in the analysis.

This year’s report zeroes in on nutrition during the critical 1,000 days at the beginning of life – from pregnancy through a child’s second birthday – and the global prevalence of malnutrition among mothers and babies.

Worldwide, the main nutritional threat to mothers and children isn’t obesity; it’s too few calories and the consequences this has on health. The report found, for instance, that more than half of the world’s children do not have access to the “Lifesaving Six”: iron folate supplementation during pregnancy, breastfeeding during the first six months, complementary feeding, vitamin A supplementation, zinc treatment for diarrhea, and adequate access to water, sanitation and hygiene.

The report explains why this is so critical:

Alarming numbers of mothers and children in developing countries are not getting the nutrition they need. For mothers, this means less strength and energy for the vitally important activities of daily life. It also means increased risk of death or giving birth to a pre-term, underweight or malnourished infant. For young children, poor nutrition in the early years also means irreversible damage to bodies and minds during the time when both are developing rapidly. And for 2.6 million children each year, hunger kills, with malnutrition leading to death.

The disappointing ranking for the United States was based on its poor showing at creating an environment supportive of mothers who breastfeed. This includes maternity leave laws and workplace policies that give women time to nurse.

Pregnancy, childbirth and infancy certainly are safer, at least in the industrialized world, than they used to be. At the start of the 20th century, for every 1,000 live births in the United States there were six to nine women who died of pregnancy-related complications and 100 infants who died before their first birthday. By 1999, thanks to improved education, public health measures and a higher standard of living, the mortality rate had fallen drastically – by 99 percent for mothers and 90 percent for infants.

These figures obscure some troubling facts, however. Maternal mortality actually has been increasing in the U.S., and at a faster rate than in any other developed nation. Nationally, deaths attributed to obstetrical causes within one year of giving birth rose from 7.6 per 100,0000 to 13.3 per 100,000 – this in a country that spends more per capita on maternal health than anywhere else. It’s in fact safer to give birth in Bosnia or Kuwait than it is in the United States.

The reasons are unclear. Part of the apparent increase may be due to improvements in data collection. But other factors may be involved as well: mothers who give birth later in life, when pregnancy- and childbirth-related complications are more likely; higher rates of caesarean deliveries and repeat caesareans that increase the risk of placental complications; and higher rates of diabetes, high blood pressure and other health risks among pregnant women. Some observers also believe the medical world has failed to successfully adapt its practices to a change in the paradigm, from young, mostly healthy women who give birth to mothers whose age, health status and background are more diverse and complex.

A report issued by Amnesty International in 2010 points to yet another cause: economic disparities and lack of access to health care for many U.S. women of childbearing age. It notes that among African-American women, the death rate from pregnancy-related complications is nearly four times that of white women, and that this disparity hasn’t budged in 20 years.

The most shameful fact about maternal and infant mortality? That the majority of these deaths, whether in developing nations or in the wealthy industrialized world, are considered preventable. The most common causes of death during delivery – uncontrollable bleeding, infection, high blood pressure, obstructed labor – can all be addressed with access to appropriate medical care. Improved nutrition for both moms and babies can make a big difference. So can factors such as alcohol use and tobacco exposure during pregnancy – and the list goes on and on.

It seems there’s still a long way to go before Mother’s Day is truly healthier for mothers and infants worldwide.

Photo: Wikimedia Commons

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

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

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

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

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

Wilkins writes:

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

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

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

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

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

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

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

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

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

The truth about nurses

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It’s National Nurses Week this week, which means gratitude, a few days of attention and maybe some free cookies for the hard-working individuals who make up the American nursing profession.

Only I can’t quite get on board with the feel-good fuzziness that tends to accompany this annual celebration, because many nurses aren’t feeling the love these days. They’re overwhelmed, tired and angry – overwhelmed and tired with the workload and constant pressure, and angry at the persistent gap between how they’re so often perceived as handmaidens and pillow-fluffers and how much they actually do.

What other category of health professionals would be expected to put up with the likes of a recent NBA halftime show featuring the Mavericks Dancers gyrating in skimpy “nurse” costumes? Or sexy pseudo-nurses in heels and red lingerie appearing on TV with Dr. Oz to illustrate exercises for weight loss?

According to the venerable Gallup Poll, nursing consistently ranks as one of the most trusted professions in America. But it seems we often have trouble connecting the word “nurse” to the word “professional”, and it shows in how nurses are often portrayed in popular culture and even in how they’re treated by patients, families and employers.

There’s some provocative research on how the role of nurses in health care is often influenced by inaccurate or incomplete images of who they are and what they do. One study that analyzed the websites of 50 leading American hospitals found that nurses were mostly invisible. Another study ties a nursing shortage to the lack of attention they receive in the media.

The truth about nurses?

- There are some 3 million licensed registered nurses in the United States.

- Nurses are trained. About one-third of RNs hold four-year bachelor’s degrees or graduate degrees and about one in five holds an additional academic degree.

- Increasingly, nurses are gaining advanced practice degrees as nurse practitioners, clinical nurse specialists, midwives and certified registered nurse anesthetists. In 2008, the most recent year for which statistics are available, about half of RNs had a bachelor’s degree or higher. More than 600 million patient visits are made annually to nurse practitioners.

- While more than half of nurses work in hospital settings, they can also be found in nursing homes, medical clinics, ambulatory care centers, community health centers, schools and retail clinics. Nurses also provide care at camps, homeless shelters, prisons and in the military.

- About 12 percent of nurses with master’s degrees work as academic educators.

- The nursing workforce is increasingly diverse. Just under 6 percent of registered nurses in the U.S. are men, 4 percent are African American, 3 percent are Asian, Native Hawaiian or Pacific Islander, and just under 2 percent are Latino.

Although it might not always seem like it to nurses who are on the front lines of daily patient care, there are signs their profession is (finally) getting more respect. There’s been some landmark research in recent years by the Robert Wood Johnson Foundation on how nurses are uniquely qualified to lead efforts to transform care at the bedside.

A number of studies have directly linked the role of the nurse to safer, better care for patients and better outcomes. And a major new initiative by the national Institute of Medicine calls for more development of the nurse workforce of the future, with an emphasis on more education and training, allowing nurses to practice at the full extent of their license and giving them full partnership – along with physicians and other health professionals – in redesigning the U.S. health care system.

A nurse might fluff your pillows if you ask nicely because for most of them, their choice of profession still comes down to a desire to care for others. But it’s time to move past the limited, inaccurate stereotypes and embrace the truth about nursing – that nurses are, and are capable of, being key players in health care and that they deserve full inclusion.

Sources: American Nurses Association; American Association of Colleges of Nursing; Minority Nurse; The Truth About Nursing.

In the waiting room

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Talking about long waits for patients to see the doctor is like touching the proverbial third rail: sure to spark frustration and anger from patients and defensiveness from the medical community.

They were at it again this week at Kevin, MD, where guest blogger Barbara Bronson Gray wrote about long waits and and delivered the ultimate judgment on this aspect of the patient experience: “Expecting me to wait a long time in the doctor’s office tells me two things. First, I don’t feel respected. The physician is, after all, my consultant. And secondly, I wonder how committed the practice is to my comfort and reducing my anxiety when they seem to be putting more emphasis on their needs than on mine.”

Touché.

As you might guess, it provoked a storm of reaction. “If you want Cadillac service, pay for it by joining a concierge practice,” one person snarked.

Other commenters, most of them apparently doctors, pointed out how hard it is to stay on schedule when patients have multiple and sometimes unpredictable issues that need to be addressed. “It often is not as simple as ‘they don’t care’ or ‘they haven’t prioritized your time,” one physician wrote. “It is a complicated combination of complexity of care, patient expectations to have care provided at one time (without a second visit/co-pay), primary care offices running at high capacity because of a workforce shortage, etc.”

I’m not sure doctors and patients are ever going to see eye to eye on this issue. But there’s no denying that wait times are a major source of frustration for many patients, which begs the question: Is reducing the wait time truly an impossible task, or is it simply not a priority for most medical practices?

And a corollary question: How long should patients reasonably be expected to wait? Is 20 minutes acceptable? What about an hour? What about two hours?

There’s been a considerable amount of study on wait times, what contributes to them and how to reduce them. To be sure, the problem sometimes rests with patients who don’t show up on time, aren’t organized during the visit or wait until the final moments of the encounter to bring up an important issue. But medical practices are kidding themselves if they don’t think they’re contributing to the problem as well.

A few years ago the American Academy of Family Practice hosted a national demonstration project on the patient-centered medical home model that included intensive evaluation of patients’ experiences. Among the issues studied were wait times, which resulted in the uncovering of some interesting data.

Patients were given a clipboard and pen when they arrived at the doctor’s office and asked to record the time at each point during the visit: when they arrived at the office, when they were ushered into the exam room, when the doctor arrived in the exam room, and so forth. There turned out to be multiple bottlenecks, ranging from cumbersome paperwork that patients had to fill out to staff inefficiencies in patient flow and setting up exam rooms between appointments. At some offices the first appointment of the day was scheduled for the same time the staff showed up to work, inevitably resulting in delays. In other cases, the practice didn’t have an appointment schedule that was flexible enough to allow for emergencies or for the patient who needed a longer visit. Sometimes doctors simply weren’t very punctual.

The best time that a practice in the national demonstration project was able to achieve? Thirty minutes, from start to finish (although this practice did not have any ancillary services, such as lab or X-ray, on site).

Dr. Melissa Gerdes describes how it was done:

They were able to achieve a 30-minute cycle time by working closely in teams. They even designed their office space to put all team members, from front-office staff to physicians, in close proximity, which encouraged ongoing communication throughout the day. They started on time. They staffed appropriately and scheduled realistically for the work capacity of the day. And they made being on time a priority.

Consider the example of several health systems that have adopted so-called lean processes that, among other things, cut down on the amount of time patients spend waiting. At a children’s hospital in Wisconsin, the time in the exam room between when the patient arrived and when the doctor came in was reduced from 38 minutes to 11 minutes.

If there’s a common thread here, it’s that the organizations that reduced their wait times were successful because they made it a priority.

What’s a reasonable amount of time for patients to wait? The national average, according to a recent report by Vitals, a physician review site, is 21 minutes. It varies regionally, from a low of 19 minutes in the Midwest to a high of 22 minutes in the South.

What’s unreasonable, then? Here’s a frustrating story from someone in the Boston area who brought a family member to an appointment, struggled with heavy traffic, couldn’t find a place to park, dropped off his relative so she could arrive at her appointment on time – then got lost trying to find the right clinic.

He recounts:

On finally reaching the right clinic, I found my family member patient still in the waiting room. She had not been told by the front desk the doctor was running behind. However, we learned from other patients who had been waiting for up to an hour and a half that she was running behind and that it is possible to give the front desk staff a cell phone number and to leave to get some lunch. We were not offered this option, but when we went to the front desk to ask, we were allowed to do this. On coming back, we still had to wait, and were finally called in at 1 p.m. (for an appointment time that was for 11 a.m.!).

Is this disrespectful of the patient’s time? It would be hard to disagree that at some point, lengthy wait times cross the line from minor inconvenience into major headache – more so if the wait time is poorly managed by organizations that come across as tone-deaf to how patients feel about long waits. Zero wait time may not be a realistic goal but many wait times clearly could be shorter and better handled than they are.

The kids are going vegan

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Children’s books aren’t usually known for being controversial, but a new book about kids and veganism has touched off a storm of debate about everything from hunger to animal cruelty to large-scale farming and what it means for the choices children make about what they eat.

Disclosure here: I haven’t yet read “Vegan Is Love: Having Heart and Taking Action,” which came out last week, although I’ve read some excerpts and watched the promotional video. The author and illustrator, Ruby Roth, previously published a similar book, “That’s Why We Don’t Eat Animals.”

Written for ages 6 and up, “Vegan Is Love” is one of the first books to outline the vegan lifestyle and philosophy for children and show them how they can put it into practice. Some sample suggestions: “Ask your favorite grocery and clothing stores to carry more vegan products.” “Learn some vegan recipes (for food or even soaps and lotions) and share them with family, friends, and teachers.”

Roth says in a news release that she doesn’t mind the controversy that has erupted over the book. “It’s high time we engage youths in topics previously reserved for adults – democracy, supply and demand, and engaging ourselves in the public realm,” she says. “Fast food companies don’t think your kids are too young to be marketed to, agribusiness uses the word ‘sustainable’ to talk about GMOs, and marine parks and zoos want kids to believe they are conservationists. If you don’t educate your kids, someone else will.”

This isn’t how the critics see it, however, and many of them have been quite vocal about the book’s message. Some say the topic is inappropriate for children. Others point to some of the book’s illustrations, which include images of animals in crowded cages, and worry that children will be disturbed and upset.

“The main problem that I have with this book is that children are impressionable, and this is too sensitive of a topic to have a child read this book,” wrote Nicole German, a registered dietitian from Atlanta, on her blog. “It could easily scare a young child into eating vegan, and without proper guidance that child could become malnourished.”

I’m going to skip over the issues raised in the book about factory farming, animal testing and zoos, and focus instead on the nutritional concept of children and veganism: namely, whether it’s healthful or desirable for children to pursue a vegan diet.

As it turns out, the answer is yes – although nutrition experts caution that parents need to pay close attention to whether their child’s vegan menu is adequate and well balanced.

When a group of British researchers reviewed the pros and cons of vegetarian diets for children back in 1998, they concluded that these are no more likely to be bad for children’s growth and development than an omnivorous diet. They found that vegan diets are “more likely to be associated with malnutrition, especially if the diets are the result of authoritarian dogma.” But they also note that the main challenges to children’s eating habits are similar regardless of diet: lack of variety, lack of physical activity and too much reliance on packaged convenience foods.

The position of the American Dietetic Association is that “well-planned vegan and other types of vegetarian diets are appropriate for individuals during all stages of the life cycle, including during pregnancy, lactation, infancy, childhood, and adolescence.”

This doesn’t necessarily help resolve the many other, and perhaps more thorny, questions surrounding children and veganism. When are children old enough to start making deliberate choices about the food they eat? How should omnivorous parents react if their child announces he or she wants to become a vegan? Inasmuch as food habits often contain an emotional component, how do we discuss them in a way that keeps the emotions to a minimum?

For all the commotion about childhood obesity and children’s food habits, it’s intriguing that a little book about veganism would raise such a ruckus. Maybe it’ll get the conversation going in a new direction.

Who’s old? Not I

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To someone in their teens or early 20s, anyone over 30 is old. When you’re in your 40s, the 70s seem impossibly ancient. And when you’re 70-something? Well, then it’s the octogenarians who are old.

We think we know what it means to get old, yet our perceptions often are fueled by stereotypes about older adults – and as with most stereotypes, it can end up doing more harm than good.

The down side of pigeonholing older adults was astutely explored in a recent entry at the Covering Health blog. Although it was aimed primarily at reporters, it contains a larger message about what can happen when we categorize older adults as “old” instead of seeing them for what they are: a highly diverse population with diverse needs and in diverse states of health.

For starters, older adults themselves often don’t perceive themselves as old, writes Judith Graham, topic leader on aging for the Association of Health Care Journalists.

She cites a 2009 study by the Pew Research Center that reveals some interesting insights about aging. Here’s one: Of the adults over age 65 who participated in the poll, 60 percent said they felt younger than their actual age, and many said they felt 10 to 20 years younger than they actually were.

Here’s another: There’s a measurable gap between what younger adults expect their lives to be like as they get old – negatives such as memory loss, loneliness, depression – and what older adults report as their own experience.

In other words, despite the stereotypes, aging often isn’t the burden younger adults think it is.

So why do we persist in viewing the elderly as, well, elderly – and, more to the point, what are the consequences of doing so? Some provocative studies have suggested that when older adults internalize the widespread cultural stereotype that to get old means to become frail and diminished, they are more likely to be in poor health and less likely to take care of themselves, Graham writes.

In response, there has been a push to rewrite the script on aging to portray it in more positive terms, she writes. But beware making too many assumptions in this direction, Graham warns:

The danger here is that efforts to create a new narrative focused on the positive aspects of aging – one that centers on activity, wellness, encore careers, volunteering, and having more time to spend with friends, family – risks marginalizing older people who aren’t especially healthy or well off financially.

I’d add that it also risks sending the message that older adults who aren’t as healthy are somehow doing it wrong and are in need of being “corrected.”

To be sure, efforts to create a better, more healthy old age are beneficial, not only to individuals but to the communities they live in as well.The key, points out Graham, is to view older adults as individuals, each with his or her own life story, challenges and desires. When she advises that “there’s no substitute for face-to-face interactions,” she could be talking about the setting of the medical exam room, the hospital room or the skilled nursing facility.

It may take time to encourage older adults to talk about themselves, Graham says. “But I suspect you’ll be surprised by what older people will tell you, if you take the time, suspend judgment and truly listen.”

‘Questions are the answer’

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The consensus is virtually unanimous: If they want better care, patients need to speak up. But for many, this is easier said than done.

If three decades’ worth of research on patient engagement is any indication, most people tend to suddenly become silent in the doctor’s office. Some studies put the average number of questions asked during the appointment at only two.

How to change this?

Encouraging people to ask more questions and giving them some tools to get started with question-asking behavior is the focus of a newly launched campaign by the U.S. Agency for Healthcare Research and Quality, It’s called “Questions Are the Answer,” and it’s based on a solid body of evidence that when it comes to safe, effective health care, communication matters – not only communication by the doctor but by the patient as well.

The AHRQ campaign is the latest in a widening national effort to better equip patients to become active partners in their care.

What can happen when patients are too passive about asking questions? They could have the experience of Alastair McGregor, whose story appears on the AHRQ website in a collection of videos featuring patients and clinicians. McGregor’s heart rate was excellent but he had high blood pressure, so his doctor prescribed medication to lower it. Unfortunately the medication led to an increasingly irregular heart rhythm – which McGregor didn’t report to the doctor until he wound up in an emergency room.

Lesson learned: If there’s a problem, bring it up, McGregor tells viewers. “This is not a question of just taking my car in to have the oil changed, and sitting there while it’s being done,” he says. “This is me. I happen to be the car.”

The AHRQ campaign makes another key point: These days, good clinicians want their patients to ask questions. The health care team can’t address the patient’s concerns or provide appropriate care if the patient doesn’t speak up, the website points out.

Because it’s all too common for patients to be unsure of what to ask, the AHRQ website offers a list of 10 “starter” questions: What is this test for? When will I get the results? How do you spell the name of that drug? What are the potential side effects?

There’s a cool Question Builder tool that helps patients prepare for a doctor’s appointment by identifying and prioritizing the questions they want to ask. There also are tips for questions to ask during the appointment itself and for following up afterwards.

It would perhaps be unrealistic to think the “Questions Are the Answer” campaign will be, well, the total answer to getting more patients involved in their care. There are plenty of other reasons why patients are reluctant to speak up – feeling rushed through their appointment, not wanting to “bother” the doctor, fearful of looking stupid or having their question ignored or trivialized. Sometimes patients don’t ask because they’re afraid the answer will be something they aren’t yet ready to hear. Sometimes it comes down to health care culture and the openness (or not) of individual clinicians to listening to what their patients have to say. Language and literacy barriers are additional obstacles that aren’t easily overcome.

Instilling confidence in people that their questions are expected – welcomed, even – seems like a major first step, however.

If more proof is needed of the importance of asking questions, consider this: Studies clearly demonstrate that when there’s good communication between doctor and patient, health outcomes are generally better. Exactly how this works isn’t entirely understood, but researchers have measured greater trust, more agreement on the plan for the patient’s care, higher-quality medical decisions, increased adherence and greater shared understanding than when communication is lacking. Moreover, asking questions is considered one of the hallmarks of positive information-seeking behavior by patients.

The only truly dumb question? It’s the one the patient wants answered but fails to ask.

Undermining the patient

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

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

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

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

Ouch.

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

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

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

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

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

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

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

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

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

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

Photo: Wikimedia Commons

When families clash during the doctor visit

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Family togetherness is usually a good thing but sometimes it’s a source of conflict, and new research suggests doctors can be slow to recognize when families disagree about the best course of care.

A small-scale study involving patients with advanced lung cancer, their oncologists and caregivers found that the doctors didn’t always notice differences of opinion between patients and families.

In interviews conducted separately with the participants, the researchers found that most of the time, patients and families did agree on important care decisions such as extra tests or options for hospice care. And most of the time, the doctors correctly perceived there were no conflicts between the patient and caregiver.

But in seven cases in which a patient reported conflict with a family caregiver, the doctor picked up on only two of them. Of the 17 cases in which a caregiver reported conflict, five of them were recognized by the doctor. And in the 15 instances in which both the patient and caregiver separately reported some kind of conflict, only two of them were recognized by the doctor.

This was a very small study but the implications are intriguing.

Do the findings mean doctors are often obtuse about what’s going on between patients and caregivers? Sometimes they are, perhaps. “This is not something that oncologists regularly explore with patients,” Laura Siminoff, of the Virginia Commonwealth University School of Medicine and one of the researchers, told Reuters News.

But it’s equally likely that patients and families often hide their disagreements when they’re in the presence of the doctor. Maybe patients are uncomfortable bringing it up, especially if a family member is in the exam room with them, or maybe they don’t want to bother the doctor with something they perceive as trivial, Siminoff suggested.

There’s a bigger question here, though: Does family involvement help or hinder patient care?

Experts in patient advocacy are unanimous in believing patients fare better when they have a family member or caregiver who’s committed to helping them manage their health and who can advocate for care that’s in their best interests. There’s been considerably less focus on how to deal with families who disagree or don’t function well together.

American Medical News recently explored this topic and what it means for the clinician who’s sometimes caught in the middle:

Even as the push toward the patient-centered medical home stresses the invaluable role that families can play in improving compliance and health outcomes, the presence of a relative raises a host of complicated issues for physicians to navigate.

“Now you’ve got potentially two patients in the room,” says Jason Karlawish, MD, professor of medicine and medical ethics at the University of Pennsylvania School of Medicine. “You even have a kind of third patient, which is the relationship between the family member and the patient. If you ignore that, you ignore it at your own peril.”

Some examples of how the dynamics can get complicated: The patient might not want the family member in the room but is too polite or too intimidated to say so. Family members might have an agenda that conflicts with that of the patient. Relatives who are distrustful might second-guess or undermine the doctor’s assessment and recommendations.

The visit doesn’t have to get adversarial to be difficult, noted the physicians interviewed by American Medical News. Sometimes well-meaning family members simply take over the discussion, talking on behalf of a patient who’s perfectly competent to speak for himself or herself. Or they might appeal to the doctor to take sides in a family dispute over health behaviors, such as a spouse who doesn’t want to stop smoking or an aging parent who doesn’t want to take a medication.

The biggest mistake that can be made, according to Dr. Yul Ejnes, an internist in Cranston, R.I., is “to forget that the patient is the boss.”

Conflict can be magnified a thousandfold in high-stakes situations, such as when end-of-life decisions need to be made. The study involving the lung cancer patients and their caregivers and oncologists didn’t look at whether disagreements – and the doctor’s lack of awareness of them – had an impact on care, but Reuters Health spoke to experts who said the discord often raises the family’s stress level and can complicate the process of making treatment decisions.

Dr. Anthony Back, an oncologist at the Seattle Cancer Care Alliance, said it’s important for oncologists to notice the cues and to call in a social worker or therapist to help resolve family differences. “Sometimes those things are beyond the purview of the oncologist,” he said. “But when (patients and caregivers) have some major issues, they need to figure it out and we have other resources for them.”