Category Archives: doctor-patient communication

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.

‘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.

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.”

Giving the patient bad news

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

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

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

“Does Betsy know?” he asks.

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

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

“She should be tested for AIDS.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Worrying ourselves sick

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You have a headache that won’t go away. In search of more information, you Google your symptoms and discover you might have eyestrain or tension. Or food allergies. Or meningitis. Possibly even a brain tumor.

How can the average person make sense of all the health information available on the Internet?

Often they can’t, and it may be to their detriment, suggests an American Medical News article outlining the increased anxiety some doctors are seeing among patients who research their symptoms online.

From the article:

The increase in using the Internet to self-diagnose comes at a time when many physicians are encouraging patients to be more involved in their medical care to help improve health outcomes, particularly for chronic illnesses. Some health professionals say researching medical concerns on reputable websites can be a positive step for patients, because it helps them become more educated about their health. In doing so, patients sometimes accurately diagnose themselves, particularly when it involves common illnesses, such as appendicitis and strep throat, doctors said.

More often, though, the large number of health websites, some of which are unreliable, mislead patients into thinking they have a medical problem, say health professionals. They say the outcome frequently is heightened patient anxiety and unnecessary screening tests that can result in medical complications. Cyberchondria also demands that physicians spend more time in office visits as they discuss why the individual thinks he or she has a particular disease, educate the patient on why that diagnosis is unlikely and then determine the true cause of the symptoms.

I can attest to some of this firsthand. For the past decade I’ve belonged to an online lymphoma discussion group. Lymphoma is one of those cancers whose symptoms are often vague. It isn’t easy for the layperson to distinguish between fevers and enlarged lymph nodes that might be a sign of lymphoma vs. fevers and enlarged lymph nodes that are a sign of something more benign, such as an infection.

On a regular basis, people join the group who haven’t been diagnosed with lymphoma (often they haven’t even had a biopsy yet) but are worried sick they might have it because of what they read on the Internet. Most of the time their fears turn out to be unfounded. In fact, some of the staunch old-timers in the group have started issuing a standard line of advice to these folks: Get off the Internet until you’ve had a chance to talk to your doctor and/or have a formal diagnosis. Some are reassured by this but others aren’t, and their distress can be painful to see.

A little bit of worried-well behavior is not necessarily bad. Sometimes it can prompt people to take necessary action. Sometimes the patient even turns out to be right. At what point, however, does it cross the line?

A question worth asking is whether cyberchondria is just another form of the classic hypochondria, amplified by easy access to online health information. Academic studies on cyberchondria seem to be few and far between. (When I conducted a search via the U.S. National Library of Medicine and National Institutes of Health, I found exactly five published reports.)

The most recent study appeared last month in the Journal of Anxiety Disorders. It explored whether health anxiety is linked to the online use of health information and concluded that yes, there’s an association and that individuals who already have underlying anxiety about their health can become worse the more time they spend researching health information online.

Perhaps this is at least partly a matter of degree. It’s one thing to worry; it’s quite another for the anxiety to escalate into full-blown hypochondria, which can become so obsessive as to interfere with careers, relationships and quality of life.

Among those interviewed by American Medical News was Dr. Rahul Khare, an assistant professor in the Department of Emergency Medicine at Northwestern University Feinberg School of Medicine in Chicago. Dr. Khare said he’s seeing an increase in cyberchondria, especially among young adults who show up in the emergency room after researching their symptoms online.

Patients are “way more knowledgeable” than they used to be, he noted. “But too much information without proper guidance can cause anxiety or fear.”

I don’t think we’d want to return to an era when patients were told a minimum of information and paternally advised not to worry. The challenge these days is just the opposite: learning how to sift through vast amounts of data and figuring out which pieces are relevant and which aren’t. It gives me a whole new respect for what it takes to learn how to think like a doctor.

Fessing up to tobacco use

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It’s a question many of us are routinely asked during a visit to the doctor: Do you smoke or use tobacco?

Ideally, nothing less than the truth should suffice – but according to a newly released poll, about one in 10 people opt to conceal their smoking status from their health provider.

The survey, which involved 3,146 American adults who were either current or former smokers and was conducted by Legacy, a national public health organization, offers some interesting insight into the evolving social attitudes surrounding tobacco use – namely, a stigma that seems to be making it harder for some smokers to confess their habit to a doctor. About 13 percent of those who participated in the poll said they didn’t tell their doctor that they smoked.

According to the survey findings, smokers had a variety of reasons for concealing their tobacco use. Some were ashamed; others didn’t want to be nagged or lectured. But what’s especially noteworthy is this: The more stigmatized they felt, the less likely they were to disclose their smoking status.

The poll uncovered another interesting fact: Although the majority of smokers said they were honest with their doctor about whether they smoked, 25 percent did not seek help from a doctor or nurse during their most recent attempt to quit – and hence may have missed out on an important source of support.

Public health policy in the United States is strongly focused on reducing tobacco use. One of the key strategies has been to make it so uncomfortable to smoke – via higher cigarette taxes, smoke-free restaurants, higher health insurance premiums and so on – that people are either motivated to quit or discouraged from taking up the habit in the first place.

There’s evidence that it all contributes to making a difference. According to the most recent figures available from the U.S. Centers for Disease Control and Prevention, the number of American adults who smoke declined from 20.9 percent in 2005 to 19.3 percent in 2010.

It’s worth asking, though, whether efforts to make smoking socially unacceptable might reach a point of diminishing returns. In an accompanying news release, Cheryl Healton, president and CEO of Legacy, notes there’s been “a significant shift in the social climate” surrounding tobacco use in the U.S. in recent years.

“As an unintended result of higher prices of cigarettes, increased measures to ban smoking in public places, and create smoke-free workplaces, many smokers may feel marginalized and less compelled to discuss smoking with their physicians and other providers,” she said.

And when smokers don’t want to disclose their habit for fear of being judged, “it becomes a missed public health opportunity” to connect them with resources that might help them quit, Healton said.

The findings from the survey prompted Legacy to put together a guide that helps clinicians discuss tobacco use with their patients in ways that are sensitive and appropriate rather than stigmatizing. Although it’s ultimately up to smokers to decide to quit, how health providers approach the issue clearly does seem to matter.

Photo: Wikimedia Commons

Opening up the doctor’s notebook

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If you could see what your doctor is writing about you in your medical record, would this hurt or enhance the doctor-patient relationship?

A new survey on the progress of the OpenNotes project found that the majority of patients – more than 90 percent – are supportive and even enthusiastic about being able to read the doctor’s notes. But among physicians, the reaction was more mixed. Although many believe that sharing their notes can be beneficial, doctors in general have far more reservations about it than patients do.

The findings of the web-based survey appeared a couple of weeks ago in the Annals of Internal Medicine.

I’ve been following the OpenNotes project since it was launched some 18 months ago (I’ve blogged about it here and here). A quick summary: Lab reports, test results and other portions of the medical record increasingly are being shared with patients in the name of helping them become more informed and engaged in their care, not to mention that it’s the patient’s legal right to see their chart. But patients historically have had more difficult access to the doctor’s notes, which typically consist of subjective observations about the encounter – what the patient said, how he or she behaved, the doctor’s thoughts about a potential diagnosis and so on.

Depending on your point of view, sharing the doctor’s notes could enhance patient care or could be downright harmful. So far, however, there’s little actual evidence to support either of these positions. The OpenNotes project, which involves 100 doctors and 21,000 patients in three states, aims to test what happens when patients have increased access to the doctor’s notes.

That there would be mixed feelings about this is no surprise. There’s in fact a rather significant gap in how patients and clinicians perceive the need for information. Patients increasingly want more information but many clinicians question how much should be shared and how well patients will be able to understand it.

Recent debate at the Bioethics Discussion Blog shows just how wide this gap can be. Allowing patients unrestricted access to their full medical record is “a bad idea,” one person wrote. “There’s no reason for most people to have complete, unfettered access to their medical records, whether guaranteed by law or not.”

Others vehemently disagreed. Wrote one commenter:

I believe that providers who don’t think patients should have complete access to their own medical records do so for one of two reasons:

1. They have an irrational fear of “losing control” of the provider/patient relationship by not being able to be the gatekeeper to what the patient sees.

2. They have something to hide.

Worries about sharing the medical record aren’t exclusive to doctors. I once picked up my medical chart only to have a nurse literally grab it out of my hands and tell me I wasn’t supposed to read it. If she thought she was somehow protecting me, she was wrong; it left me wondering what exactly was in my medical record, and it made me trust this particular hospital a whole lot less.

Although the OpenNotes project is, on its surface, about giving patients more access to their medical information, in a deeper sense it’s about something else: the cultural differences that tend to persist between the world of health care and the world of being a patient, between the doctor’s role as keeper of the information and the patient’s growing expectation of being more participatory.

Do providers really need to worry so much about what patients are (and aren’t) allowed to see?

“These fears are overreactions,” writes Dr. Thomas Feeley of the renowned M.D. Anderson Cancer Center in Houston.

M.D. Anderson has been giving patients access to their electronic medical record since 2009, he writes. “While initially doctors complained that they had to explain more to patients about what was written in their records, the doctors soon came to realize the benefit of having patients who are more informed about their care plan and lab results.”

If the topic is volatile, maybe it’s because of the tensions it reveals between providers and patients, writes Stephen Downs at The Health Care Blog. “From my perspective, it appears that many doctors are underestimating their patients and that this underestimation could lead to less patient engagement and ultimately poorer care.”

Many clinicians seem to believe their patients can’t handle the truth, while patients overwhelmingly say otherwise, he wrote. “What do you all make of that gap? How serious an issue is it?”

The OpenNotes project undoubtedly will tell us more when the final results are published. In the meantime, this will continue to be an interesting debate.

Social media use: the new risk factor?

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Doctors already query patients about whether they drink, use tobacco or are up to date on their immunizations. Should they also be asking about the patient’s use of the social media?

The question was raised on Twitter recently by Jamie Rauscher, a consultant and strategist on digital communication for health care organizations. Then it was picked up by Dr. Elaine Schattner of the Medical Lessons blog, who reflected on the world of social media and why physicians should or shouldn’t blog or tweet.

Dr. Schattner writes that blogging, for her, is both liberating and fun: “As I’m no longer practicing, this wide-open world of shared facts, some questionable, and new ideas keeps me alert and, maybe, in-touch.”

Might this not be the case for patients as well? Rauscher joined the discussion, noting that when physicians don’t spend much time online, they can be unaware of what their patients are encountering, especially sources of information that are less than reliable.

And she makes an important point: Doctors “cannot help patients find credible resources unless they understand what patients are doing online.”

She writes:

I don’t mention my social media activity to my physicians because no one asks me and there isn’t a logical time to broach the topic during an exam. Perhaps doctors should start including questions about patients’ online activity, including social media use, in the questionnaires they give patients. This could provide an opening to discuss the topic.

I can think of many reasons why screening for this could help improve patient care. For one thing, it would identify where the patient gets most of his or her information and could help clinicians more effectively tailor their patient education. For another, it’s an opportunity to assess what the patient knows and to address misinformation or provide information that’s more detailed and in-depth.

But there’s the practical perspective to consider too. People’s online habits have a way of shaping their entire daily routine. When the National Sleep Foundation conducted a survey earlier this year, it found that the increasing use of technology is starting to interfere with a good night’s sleep. Six in 10 of the respondents said they spent time on their computer before bedtime and many of them reported lower-quality sleep and feeling drowsy during the daytime.

I’ve personally learned that the sedentary aspect of Facebook, Twitter, blog reading and online discussion can seriously interfere with the need for more physical activity.

It can be hard for doctors to offer helpful, appropriate counseling about insomnia or weight gain if they don’t take the patient’s online habits into account.

Then there are the emotional minefields of bullying and harassment, which prompted the American Academy of Pediatrics to issue guidelines earlier this year for pediatricians to be on the lookout for online trouble among kids.

Many of these issues are already being debated in the medical world: Should doctors be on Facebook? How should they interact online with patients and the public? What’s ethical and what isn’t?

Although there’s a growing consensus that health care organizations need to join the online conversation (for an example, check out the Mayo Clinic Center for Social Media), whether to routinely screen patients regarding their social media habits is a different issue altogether – and at least as far as I can tell, one that apparently hasn’t gotten much attention.

What do readers think? Should doctors ask patients more often about their use of the social media? Would it lead to better patient care?

Photo: Wikimedia Commons

Health care’s new commodity

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You’re at the doctor’s office and the nurse or medical assistant is assessing your vital signs. Weight, height, temperature, blood pressure, pulse – each is measured and silently written down.

What’s missing from this picture? The sharing of information, that’s what. Are the patient’s vital signs a matter for the clinician’s eyes only, or are they something that also should be shared with the patient? Because all too often, whether it’s in the exam room or at the hospital bedside, the information goes straight into the medical record while the patient is bypassed.

I’m not trying to single out the people who take vital signs or suggest that they’re deliberately withholding information from the patient. This just happens to be an example I’ve noticed of a pattern that seems ingrained in health care culture: the assumption that the information doesn’t really need to be shared unless the patient specifically asks for it.

Late last week I was drawn into an online debate at Mind the Gap, a doctor-patient communication blog hosted by Steve Wilkins.

Wilkins opened with a basic premise: that the fastest way to disempower, de-activate and disengage patients is a trip to the doctor’s office. He writes:

If you were to believe the admonitions of the NIH, AHRQ, hospitals, pharma and every WebMD lookalike, you would think that patients these days would be more involved in their visit… asking questions, sharing information and making decisions. But as most physicians will attest… most patients don’t have much to say in the exam room anyway. And the longer they have to wait before being seen, the less patients are likely to bring up the few questions they wanted to ask.

Predictably, the responses were divided into doctors-are-incredibly-pressured-and-doing-the-best-they-can vs. patients-feel-shut-out-and-are-sick-of-fighting-for-every-scrap-of-knowledge-about-their-health.

While there are numerous factors contributing to this less than optimal state of affairs, at least some of it seems to stem from a playing field that simply isn’t level when it comes to sharing information.

One of the commenters said she asks questions in the doctor’s office and asks for copies of her medical record. “I ACT LIKE an empowered patient,” she wrote.”But it’s only possible to BE an empowered patient when the doctor is an active part of the process. An empowered patient can ask questions. That doesn’t mean that the doctor will provide an answer. An empowered patient can request notes and test results. No guarantee that those will be provided either.”

There’s in fact a new commodity in health care these days: information. Clinicians have it; patients want it. And therein lies a constant source of misunderstanding, frustration and defensiveness on both sides.

Patients chafe at the hoops they’re often required to jump through in order to obtain their medical information. This isn’t just their perception. Among complaints alleging violation of the federal HIPAA law governing the privacy of patient health information, problems with access to the medical record consistently rank No. 3 on the list of the top five violations requiring investigation and corrective action.

For their part, clinicians are under intense pressure and often can’t spend the time they’d like to share information more fully with patients. A physician commenter at Mind the Gap wrote:

This is the reality of today’s primary care office visit. 15 minutes: 4 minutes used for data entry into the EMR (has to be completed by the time the patient leaves); 3 minutes for entering lab orders and referrals; 90 seconds for reviewing health maintenance needs that have no relation to the visit at hand; 60 seconds for prescription reconciliation; THEN the six active problems can be addressed. There is no time for communication for any type, much less patient-centered communication!

Yet if you look at the research, it suggests many patients leave the doctor’s office with an incomplete understanding of key information such as what their diagnosis is or why they need a particular medication.

It’s true that for some patients, this simply might be more information than they’re able to absorb. This can’t be assumed for all patients, though. And it’s hard to see how patients can help make the most of limited time with their doctor when the default strategy is to give them minimal information in the belief that they don’t need more or won’t know how to use it.

What to do? Ironically, there’s more health information available than ever before. Consumers can go online and research their diagnosis. They can connect with other patients. They can check out the quality of their local hospital. They can rate their doctor. But none of this means very much when patients still often struggle for access to some of the most important data of all – information about their own health.

Scary tactics

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The Kandiyohi County Drug-Free Communities Coalition is in the midst of surveying students about their perceptions and priorities, and a rather interesting preliminary finding has emerged: Many of the kids believe scare tactics are an important – perhaps even necessary - strategy for discouraging young people from tobacco and alcohol use.

But are tricks really better than treats? There’s in fact mixed evidence on whether scare tactics truly are successful at getting people to change their health-related behavior.

Look no further than the FDA’s new cigarette label warnings, which go into effect in September 2012. Unlike the current warnings, which are text only, the new ones are larger and more graphic – one of them features a photo of a corpse.

Will they be effective? There’s some international research suggesting that blunt, scary tobacco warnings can result in an increase in the number of smokers who want to quit. For other people, though, it’s likely to be a turn-off.

Repeated exposure to frightmeister messages often dulls the impact, Jonathan Whiteson, director of the Cardiac and Pulmonary Wellness and Rehabilitation Program at New York University’s Langone Medical Center told USA Today earlier this year. “We become immune to the negative warnings over time. The more graphic the image, the more likely the message will become marginalized.”

Another drawback to fear-mongering is that the effects often aren’t very long-lasting. After a health scare, for instance, people tend to have trouble sustaining their motivation to live better. When Truth on Call conducted a text message poll for MSNBC.com on this issue, 47 percent of the 100 family physicians who were surveyed said their patients’ good intentions lasted for only a few weeks. A depressing 2 percent of the poll respondents said patients went back to their old ways within one day.

There seems to be some recognition in the health care world that browbeating patients with scare tactics has a way of backfiring. When the Clinical Diabetes journal published an overview in 2007 of best practices for encouraging patient adherence with diabetes management, it included a list of what not to do: “do not establish rapport; tell patients what to do; take control away from patients; misjudge patients’ sense of the importance of behavior change and their confidence in achieving change; overestimate their readiness to change; argue with patients; blame them for not taking better care of themselves; and use scare tactics.”

Unfortunately the dividing line isn’t always clear between what constitutes enough information and what’s too much. What’s the difference between scare tactics vs. fully informed consent? Are scare tactics more acceptable in public health campaigns than in the doctor-patient encounter? Do they work better among adolescents than among adults?

Ultimately, some of this seems to boil down to individual preferences and how the message is delivered.

When researchers interviewed obese African American patients for a study published two years ago in the Journal of General Internal Medicine, they uncovered some interesting nuances about how these patients perceived the use of weight-loss scare tactics. “I like to be scared. Scare me with all the bad things that can happen if I don’t lose weight,” one of the patients told the researchers. But others didn’t like it and even found it intimidating. “I look at it as a threat. The only thing the doctor should do is encourage,” was the response from one patient.

The upshot? Scare tactics seem to work sometimes, but they don’t work all the time and with many patients they’re counterproductive. Clinicians would do well to tailor their message, the researchers wrote. “Providers must be cautious when employing scare tactics as a means to promote lifestyle change to achieve weight reduction as not all patients respond well to this technique.”

West Central Tribune file photo