Category Archives: doctor-patient communication

Every move you make, the patient is watching you

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Patients have a way of hanging onto every nonverbal cue they notice, no matter how small.

Was the doctor frowning as he/she entered the exam room? Did the nurse at the hospital bedside seem harried while checking your vital signs? What was up with that brusque welcome from the receptionist? Was that an eye roll behind your back?

In any setting, body language is a big deal. The fact that people are watching, interpreting and judging, especially when it comes to leaders, is illustrated vividly by New York Times columnist Adam Bryant in his latest piece, “Are You Mad at Me?”

One day a colleague pulled him aside and asked to speak privately with him in the conference room. The question, wrote Bryant, “came out of the blue. ‘Are you mad at me?’”

He goes on to explain:

I was puzzled, but I realized later what was going on. As an editor, I faced a lot of tight deadlines, and I would often have just a short window to get a story into shape for the next day’s paper. I’m guessing I was thinking hard about some story as I walked through the newsroom one day – probably furrowing my brow, my mind a million miles away – when I briefly locked eyes with my colleague, who was startled enough by my body language to later pull me into a conference room to wonder if the air needed to be cleared between us.

Bryant writes, “I learned a memorable lesson that day about how people can read so much into subtle, and often unintended, cues.”

How much more so in health care, where patients often feel vulnerable, needy and at the mercy of a system that may or may not be responsive – and where misinterpreting the cues can have very real consequences.

The literature on the role of body language is varied and fascinating. One study carried out in the Netherlands found that people had a positive physiological response to pictures of happy facial expressions. But they showed signs of higher anxiety in response to facial expressions that were fearful or angry – and their reaction to angry signals was heightened when they were already anxious. Other studies have found people are quicker and more accurate at detecting angry faces than happy faces.

Less is known about the impact of nonverbal cues in the health care setting. For just one example of how body language can influence the doctor-patient interaction, however, consider a study, published last year, that examined the differences in nonverbal communication between white and African-American doctors when talking to older patients.

The study found that white doctors tended to treat all their older patients the same way. But black doctors often gave contradictory nonverbal cues to their white patients – smiling, for example, while crossing their arms or legs.

Other studies have found a similar pattern among female physicians interacting with male patients.

Most of these studies are fairly small and don’t really explore the impact of the doctor’s body language on quality of care or outcomes. Disparities in health care are well known to exist, however, and unconscious social bias can be very difficult to root out and change.

Meanwhile, patients notice these subtle cues and draw their own conclusions, accurately or not.

“How do you say, ‘I don’t give a damn’?” asks Kristin Baird, owner of the Baird Group and a consultant on improving the patient experience.

She relates the experience of accompanying her sick sister to see the doctor. The doctor barged into the exam room, stood with one hand on the door handle and informed her sister there was nothing he could do and that she should go to the hospital.

“Everything about his demeanor, both verbal and nonverbal, screamed: “I don’t give a damn about you. You’re not worthy of my time, so don’t bother me,’” Baird writes. “This was hard enough for me to witness, and I wasn’t the one in need of his care.”

Maybe it wasn’t personal. Maybe the doctor had just had a terrible encounter with the previous patient, or was distracted by a family crisis or suffering from burnout or depression. It leaves a mark, however, and it can become one more piece of baggage for patients to tote around and unpack in their next visit to the health care system.

There seem to be a lot of angry patients these days, and at least some of it stems from the nonverbal cues that shape people’s perceptions of how they’re treated: “The person at the front desk barely made eye contact with me. “The doctor just sat there and looked at the computer.” “The nurse/physical therapist/radiologic technologist seemed in such a hurry.”

One consequence might be heightened anxiety that prevents the patient from communicating honestly and allowing the doctor to reach the right diagnosis. If patients perceive that their participation in their care is met with annoyance or secret eye rolls, they may become frustrated or outright hostile. Perhaps they’ll take the opposite route and decide it’s better to be passive and uninvolved, even if none of these approaches are beneficial to their health.

Like hawks, patients are watching every move their clinician makes and levying their judgment, whether it’s fair and accurate or not.

The awkwardness of open notes

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Do patients really need to know what the doctor is thinking? The potential awkwardness of sharing the doctor’s notes, especially with older patients, was explored this week at The Health Care Blog, where it generated some interesting discussion about the pros and cons of how much information patients should be allowed to have.

It’s not that she’s against transparency or believes patients shouldn’t be engaged and have open access to their medical record, Dr. Leslie Kernisan writes. “It’s because in my own VA practice caring for WWII vets, I used to frequently document certain concerns that would’ve been a bit, shall we say, awkward for the patient to see. Reading about these concerns would’ve quite possibly infuriated the patient, or the caregivers, or both.”

She lists the sensitive areas: Possible cognitive impairment. Possible substance abuse, especially alcohol. Possible prescription misuse or diversion. Possible elder mistreatment. Concerns about ability to live safely at home or safely drive. Concerns voiced by family or caregivers.

Many of these can be issues regardless of the patient’s age. But they’re of particular importance in caring for geriatric patients, and they have a history of being under-recognized and under-addressed in the clinic setting, Dr. Kernisan writes.

It’s delicate to talk to a patient and family about the possibility of Alzheimer’s disease, or to suggest that an elderly person might no longer be able to manage independently at home or drive a car, she writes. It can get even more complicated when caregivers and family members are involved. Do the doctor’s private observations and speculations about what’s happening with the patient belong in an open medical record?

Dr. Kernisan wonders: “I’m not sure what I’d do if I were told tomorrow that all my patients (and whichever caregivers the patients give access to) would be able to read everything I write about them. For the most part, it would be fine, but I’d certainly have to work out an approach for handling the awkward issues I describe above.”

Complete open access to the medical record – including the doctor’s notes – is still fairly new, and there’s considerable learning yet to be done on how doctors adapt to it, how patients react to it and whether it has an effect, positive or negative, on the doctor-patient relationship.

OpenNotes, the largest project to date that has implemented and studied open access to the doctor’s notes, may have eased some of the early concerns about sharing more of the doctor’s thought processes with patients. According to the results so far, it hasn’t been more time-consuming for doctors or upsetting for patients to incorporate open notes in patient care. Most of the participants in fact have given it glowing reviews, and it seems to be fostering more patient engagement.

As Dr. Kernisan points out, however, the patient population in the OpenNotes study is middle-aged on average; what about elderly patients who may be dealing with dementia, vulnerability, loss of independence and other difficult issues unique to their stage of life?

The responses to Dr. Kernisan’s blog have been rather revealing in terms of who’s saying what.

A physician commenter felt it could be too anxiety-inducing for patients to read the entire contents of their medical record, doctor’s notes and all. “It’s not so much that I put things in patients’ notes that I don’t want them to see, it’s that some of the things they see they don’t have the knowledge to interpret,” she wrote.

There may be benefits to “limited access,” she wrote, “but only if the doctor is available and compensated for making sense of it to their patients.”

A biomedical and computer scientist with a Ph.D. suggested that sensitive notes be kept  in a “vest pocket” section of the record, inaccessible to patients.

Not surprisingly, laypeople saw it differently. One person wrote:

If you’re my doctor, I want you to discuss your concerns with me. If you’re wondering about cognitive impairment, it’s very likely that I already worry about that. Writing it in your notes without telling me seems… Well, you’d have to explain your rationale.

The reaction from someone else: “Sensitivity is not secrecy – it is learning to say the whole truth with tact and with a compassionate understanding of how the knowledge will be applied.”

Although it was left unsaid, the entire debate raises the question: If sharing the doctor’s notes can lead to moments of awkwardness, for whom is it most awkward – the doctor or the patient?

Here’s another question: Should there be different standards of openness depending on the patient’s age?

Many people want to be able to exercise more preference over how much information they receive. Some may only want limited information and would probably make little use of open notes if they were available. But others want more and are willing to accept the anxiety, the uncertainty and whatever other negative emotions might arise as a result of reading their medical record.

As the ongoing open-notes debate shows, however, doctors have reservations about whether this is always best for the patient. Is there any way these two perspectives can be brought closer together?

Update, Jan. 28: Two of the pioneers in the OpenNotes initiative respond on The Health Care Blog with some observations on their own experiences with open notes and on the conversations they’ve had with other providers.

Does online patient access = better care?

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When patients have online access to their medical record and the ability to email their doctor, does it lead to better care?

In theory, patient portals are supposed to improve communication between patients and clinicians and encourage patients to become more engaged in their care, thereby producing better outcomes. There has also been a belief that if patients can view test results online and have non-urgent concerns resolved via email, it would help cut down on in-person use of health care services and allow the system to function more efficiently.

But a new study, carried out by Kaiser Permanente and published last month in the Journal of the American Medical Association, has found that the case for efficiency might be wishful thinking.

Previous studies that have examined patient use of health information technology have mostly been small. This study was a large one, involving about 44,000 Kaiser Colorado members who had online access to their medical record and 44,000 who did not. Both groups were followed before and after the introduction of an online patient portal.

The results were surprising. Contrary to what the researchers expected, patient use of the portal was associated with more, rather than fewer, office visits and telephone calls. The researchers found an 8 percent increase in the volume of phone calls from these patients and a 16 percent increase in office visits.

Patients who had access to the online portal also made more visits to the clinic after hours, went to the emergency room more often and were hospitalized more often than those who weren’t signed up for the portal.

Is there a connection between online access to medical information and care-seeking behavior by patients? The study wasn’t designed to explore this, although Dr. Ted Palen, the lead author, speculated in an accompanying audio interview that patients who anticipated needing more care may have been more likely to sign up for the portal in the first place.

It’s an intriguing study because there’s still much that isn’t clear about how health information technology is shaping patient behavior and the impact this has on the delivery of health care. Which patients are more likely to use online access to their doctor and their medical record? Do patient portals foster more engagement? Are outcomes better for these patients? When a medical practice decides to offer an online patient portal, does it promote more efficient communication or does it create an extra burden?

This last point is important. An 8 percent increase in phone calls or a 16 percent increase in office visits might not sound like much, but when it’s applied across a system  with thousands of patients, it can add up to a significant impact, Dr. Palen points out.

Health systems considering the use of patient portals need to ask themselves whether they have the capacity to absorb a potential increase in utilization, he said. “You’d better plan for that.”

The findings from the study could further dampen the enthusiasm for online patient portals, which the health care system has been slow to adopt anyway. What we don’t know, however, is whether the additional office visits and phone calls were actually beneficial in some way to patient health, or whether there was a fundamental difference between the patients who signed up for the portal and those who didn’t.

The increased utilization may in fact have been “a good thing” if it led to better outcomes and health status in the long run, Dr. Palen said. But it seems far more study and analysis are needed to truly sort out the impact of patient-centered information technology and how to use it wisely, appropriately and effectively.

Sharing the doctor’s notes

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The verdict on the Open Notes Project is in, and it’s everything proponents had hoped for: Sharing the doctor’s notes with patients can lead to better care.

I’ve been following the Open Notes Project with a great deal of interest. Although there’s been an increasing push for consumers to have more access to their medical record, few studies have ever examined how this could change the patient experience or the doctor-patient relationship. Even less is known about what might happen when patients are given full access to the doctor’s office notes, wherein observations, judgments, possible diagnoses and the doctor’s thought processes are contained.

Would patients find the information useful? Would it improve their care? Or would it cause undue worry or force physicians to spend more time explaining to patients and reassuring them?

The Open Notes Project, which started in 2010, is an attempt to find out. Three primary care practices, 105 doctors and 13,500 patients in three states – Massachusetts, Pennsylvania and Washington – were involved in the study, which lasted one year.

The results were reported in the Annals of Internal Medicine last week, and it was overwhelmingly clear: Patients liked being able to access the notes, they reported greater engagement in their care, and the vast majority wanted it to continue.

Most looked at the doctor’s notes at least once during the course of the study. Between 60 and 78 percent of those taking medications said it helped increase their adherence, and most also reported feeling more in control of their care.

Although some critics (mostly doctors) worry that allowing patients to see their office notes could be confusing, upsetting or possibly offensive, that wasn’t the case with the Open Notes Project. Fewer than 10 percent of the patients at each of the study sites reported experiencing this.

Moreover, it wasn’t the time sink that doctors may have feared. Fewer than 10 percent of the participating primary care physicians saw the length of the patient visit increase or had to spend more time answering patients’ questions outside the visit. Nor was there any change in the volume of electronic messages from patients. More significantly, none of the participating physicians opted out of Open Notes once the study was completed.

The time factor for physicians is very real. No matter how much patients might push for change, there’s little incentive for a medical practice to adopt new approaches if the result ends up being more time-consuming. The Open Notes study might not put this fear entirely to rest, but it provides some data to suggest that open access to the medical record is less burdensome than critics think.

The study’s authors concluded:

Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

In fact, more than half of patients felt they should be allowed to add their own comments to the doctor’s notes, and one in three believed they should be allowed to approve the contents of the notes before they were finalized. Not surprisingly, the majority of the doctors (85 to 96 percent) disagreed, which raises the question: To whom do the notes, belong – the doctor or the patient?

There’s a great deal of debate over how much power patients should have. One of the arenas in which the battle is waged is access to the medical record. After all, the record contains information that’s intimate and subjective; is it the doctor’s prerogative to keep sole control?

Some would say yes. Dr. Edwin Leap, an emergency-room doctor and blogger, recently lamented the difficulty of recording the naked truth. He wonders: Instead of writing dispassionately about a 35-year-old man who wrecked his moped while drunk and is now in the ER complaining about a superficial scratch, why can’t he document, “This enormous whining man-child is drunk all of the time, lost his license, and is now playing the pain card to obtain yet more mind-altering substances, which he will either abuse or sell from his mother’s basement until he is struck and killed by a large truck or slips into an Oxycodone/Xanax/moonshine coma and ceases all respiration”?

It might be truthful, at least according to the doctor’s perspective, but how would it play if the patient read that in his record? And how much of this observation is accurate vs. a subjective judgment on the part of the physician? It’s interesting to note that among the physicians who participated in the Open Notes pilot project, a bit of self-censoring may have taken place. Many reported that they made some changes in what they document and that they spent more time writing their notes.

While this may be a concern, it’s not significant enough to conclude that opening up the doctor’s notebook to patients is a bad idea, writes Michael Meltsner, who penned an accompanying patient perspective to the Open Notes study in the Annals of Internal Medicine.

In fact, the clear value outweighs any of the negatives, Meltsner concludes. Patients aren’t served well when information is kept from them, he writes. Although the truth may cause anxiety, “pain and anxiety are part of the human condition and are as likely to be produced by a sense of ignorance and powerlessness as by knowledge. The difference turns on who decides.”

Moreover, giving patients access to their full medical record can help them become more engaged in their care and more accountable for their health, Meltsner writes. “The benefits that come from a greater flow of information hold considerable promise for creating a healthier society, a result that is plainly worth the costs.”

Read more about this issue: Letting patients read the doctor’s notes; Open notes and what else is new?; Open Notes: The results are in.

The million-dollar question: Are you a team?

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The new patient had a question and, according to Dr. James Salwitz, it was “a zinger”: “What is the culture of collaboration in your group?”

Very few patients ever think to ask this or perhaps even realize it’s important, Dr. Salwitz reflected recently on his blog, Sunrise Rounds. But maybe they should, because when medical groups function effectively as a team, they’re also better able to provide good care. Or, as Dr. Salwitz puts it, “As with lessons learned in kindergarten, if your doctor does not play well with others, your medical care may be in trouble.”

Why would collaboration matter, when the patient’s primary relationship is with his or her own physician? Dr. Salwitz lists some reasons:

- Doctors can’t be available 24/7 and there may come a time when the patient must be seen by someone else. Colleagues need to know the plan of care for the patient, and this takes skilled and consistent communication.

- Doctors need to be able to review cases with their colleagues and give and receive constructive criticism without becoming defensive or isolated.

- Working closely with colleagues is how doctors are able to evaluate each other’s skills and abilities. Doctors depend on this knowledge when referring patients to other physicians.

I’d take this one step further by including the rest of the doctor’s staff. Patients don’t generally get to choose the nurse, the person who answers the phone or the person at the front desk, but these individuals are part of the team too – and what they do, or don’t do, can either enhance the care of the patient or sow confusion, frustration and the potential for error.

The impact of teamwork on patient outcomes is difficult to measure. But as it turns out, there’s a whole chunk of research reinforcing that patient care tends to be better and safer in organizations that emphasize a culture of collaboration.

One classic study, published in 2009 in the American Journal of Surgery, found that poor teamwork was associated with more complications and more deaths among surgery patients. Among the behaviors that seemed to make a difference were the amount of information shared during the surgery and how well the team was briefed during handoffs.

Other studies have documented the problems created when health care professionals engage in disruptive behavior.

And a study of a group of emergency rooms found that when physicians, nurses and technicians received formal training in emergency team coordination, they performed better as a team and made fewer errors.

How can consumers assess the quality of teamwork at their clinic or hospital? There’s no set of standardized online ratings, at least yet, hence not much guidance for the public. But Dr. Salwitz offers a few thoughtful questions with which to start the conversation:

“Do you discuss cases with your partners?” “How do you cover each other on the weekends?” “How long have you been together?” “What do you, as a doctor, look for in other doctors?” “What is your culture of collaboration?” And finally, “Is there a unifying philosophy that the doctors in your practice share? What is it?”

More patients ought to be asking these questions. And maybe more clinicians ought to be thinking about what their response would be.

Show me my test results

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Many people are perfectly satisfied with having their doctor communicate the results of medical tests and explain what they mean. Others want the results, like, right now instead of waiting for the information to first be channeled through the doctor.

Which way is best?

Once upon a time, there wasn’t much choice. The way the system worked was that the doctor reviewed the test results first, then shared them with the patient. Now all of this is changing, propelled by a growing desire by many people for direct access to their medical information. It’s being further fueled by a U.S. Department of Health and Human Services proposal to expand direct consumer access to laboratory test results, an option that’s currently only allowed in a handful of states, to all U.S. health consumers.

There’s considerable debate, however, over whether this is good or bad, and how the disclosure of test results should best be handled.

By all means, give patients access – but there should be guidance by a physician in order to understand what the test results mean, is the position of uberblogger Dr. Kevin Pho, who recently wrote on the subject for USA Today.

Dr. Pho writes:

Patients should have access to their lab tests. But it is crucial that a medical professional explains the results. Raw numbers without the benefit of context can also cause patient anxiety. Some abnormal results are due to chance or lab errors. Other results can be a normal variation for that individual patient. Many lab results are misleading and not indicative of any disease. Patients often assume the worst, so viewing results alone might cause unnecessary alarm.

He has a point. It’s often difficult for the layperson to sort through the numbers and try to figure out which, if any, are significant. People can become upset by what they see, and it isn’t always easy to allay their fears over something that has been misunderstood or misinterpreted.

On the other hand, why not give patients some credit for being able to comprehend their test results and deal with whatever the emotional fallout might be?

Barbara Bronson Gray, a registered nurse who blogs at BodBoss, holds the latter view. In a recent blog entry, she demolishes all the reasons physicians often give in favor of maintaining the status quo.

Patients might become unduly anxious by their test results. “We’re grown ups. We deal with good and not-so-good information all the time. No one holds my hand when I see what happened to the stock market on a given day.”

Patients won’t understand the results. “Try me. If I don’t understand, I won’t freak out. I’ll just do some research or ask you.”

Patients will take up too much of the doctor’s time asking questions about their lab results. “It doesn’t really take very long to explain what these things mean.”

The debate over direct and immediate access to lab results is an echo of an even larger conversation about access to the complete medical record. It’s a power struggle over information – who has it, who controls it, who decides.

Health care practitioners are being forced to rethink how they’ve traditionally regarded the patient’s medical information. Simply communicating to someone that their test results are “normal” doesn’t (and shouldn’t) really cut it anymore. And given the amount of health information available online these days and people’s willingness to pursue it, the assertion that patients don’t have what it takes to understand their test results is beginning to ring rather hollow.

From the clinician’s point of view, there may be problems and nuances about giving people direct access to their test results – logistics, for instance, or timing – that make this somewhat more complicated than a straightforward case of “gimme my results.” There’s a fine line, however, between honest concern over whether the public is ready for this and plain old-fashioned paternalism. The real question seems to be where that line should be drawn.

What do readers think? Do you want direct, immediate access to your test results or would you rather receive them from the doctor?

Of zebras, unicorns and rare events in medicine

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By any measure, it’s a horrifying story. Rory Staunton, a 12-year-old from New York, died April 1 after a seemingly minor cut on his arm became infected with Group A streptococcus, leading to septic shock that fatally overwhelmed him.

A New York Times article this week recounts the frightening and ultimately tragic chain of events: how Rory’s parents brought him to the pediatrician, then to the emergency room. Feverish and vomiting, he was thought to be suffering from a stomach virus and dehydration. He was sent home, then brought back to the ER by his parents as his condition steadily worsened.

Abnormal lab results from his first visit to the ER apparently weren’t recognized or acted upon, the Times reported. Nor were they shared with his parents, who were increasingly anxious and worried that no one was hearing their concerns.

This story is about many things: the death of a child. A bereaved family. A health system that seemingly dropped the ball. Lapses in communication. A failure to connect the dots or notice alarming red flags.

I could write about any of these but I’m going to focus instead on something else: the rarities of medicine, those one-in-a-million complications or tragic outcomes for which most of us are never really quite prepared.

There’s a saying in medicine: “When you hear hoofbeats, look for a horse, not a zebra.” In other words, what ails the patient is most likely something common rather than something unusual.

Most of the time this serves the diagnostic process well… except when it doesn’t. Zebras might be uncommon but, unlike unicorns, they aren’t nonexistent and therefore safe to dismiss. Inevitably there’s the rare patient with an unusual problem or atypical symptoms. These situations challenge clinicians to think outside the box – to consider the common things first but to be aware of the less-common possibilities.

Of all the processes in medicine, diagnosis is among the most complex. It requires the ability to think critically, to consider all the possibilities, to collect and study the evidence, interpret the findings and draw accurate conclusions.

Not surprisingly, there can be missteps along the way. There’s a growing body of research into diagnostic error and why it happens. Two-thirds of these mistakes lie within system vulnerabilities – delays in scheduling procedures, failure to follow up on test results, poor coordination of care, inadequate communication that prevents critical information from being shared, and so on.

But about one-third of diagnostic delays and errors are thought to rest with the clinician’s thought processes – for instance, “anchoring bias,” or locking onto key features of the patient’s symptoms too early in the diagnostic process and failing to adjust when later information suggests something different. To put it another way: convincing yourself that the hoofbeats you’re hearing belong to a horse, despite subsequent evidence to the contrary.

How should health care deal with the fact that sometimes there are zebras in the herd? The New York Times article about the Staunton family has drawn more than 1,000 responses, many of them from physicians whose reactions range from empathy to defensiveness.

“As an ER physician, I can tell you that we see hundreds if not thousands of patients JUST like this every month,” one doctor wrote.

Another doctor commented, “If you look at the medicine involved, I would bet out of thousands of 12-year-olds with this same presentation he would be the only one with this type of outcome. While it is very human to look for blame, sepsis in teens or preteens from a cut without other factors is very very rare. And flu symptoms are very common.”

The tenor of some of the discussion suggests, appallingly, that septic shock was such an unlikely possibility it was reasonable not to consider it.

Therein lies one of the issues. If you test for every possibility to rule out even the slightest chance of something rare, the system would rapidly be overwhelmed. But if you fail to recognize that rare situations aren’t impossible, you risk missing a diagnosis that could save the patient.

It’s zero comfort for patients and families to be told they lost the one-in-a-million odds of not being a zebra. The standard advice – speak up, ask questions, advocate for yourself – crumbles in the face of unusual diseases or complications that most people couldn’t possibly be expected to know about or anticipate.

There’s a challenge here for health care. Much of the work in patient safety focuses on errors that are common or that represent a trend. It makes sense, since addressing these can have the greatest impact on the largest number of patients. But where does that leave the rare incidents that, by definition, are rare? Should they be viewed as a fluke that couldn’t have been prevented? Or assigned a lower priority on the grounds that they’re simply not very likely to happen? What about the human cost of failing to recognize that sometimes the horse really is a zebra?

It’s not clear what the answer should be. In the meantime, a family is grieving and in emotional shock, and every clinician involved in this case is agonizing over what they could have done differently. The scars are going to last forever.

Update, July 19: The hospital involved in Rory Staunton’s case has announced several major changes in the discharge process for emergency-room patients. A key quote from Dr. Joshua Needleman, a specialist in pediatric pulmonary medicine at Weill Cornell Medical Center, New York: “The big questions are about how to integrate new information that doesn’t fit with the perception you have formed. How to listen to the patient when they are telling you something that doesn’t fit with your internal narrative of the case. Those are the hardest things to do in medicine and yet the most important.”

When words matter, and why

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Call it a teachable moment. While training at Memorial Sloan Kettering Cancer Center in New York City, Dr. Don Dizon was asked to evaluate a woman in her 60s with recurrent ovarian cancer and then present her case to a physician mentor.

He summed up the situation for his colleague: “Well, since she failed this regimen, I think she needs to start on a new salvage treatment. What about a combination?”

In a recent blog entry at ASCO Connection, Dr. Dizon describes what happened next:

He looked at me kindly but with a degree of exasperation.

“Don – if there’s one thing I’ve learned, it’s that people do not fail chemotherapy. The chemotherapy didn’t work, but no one failed; she didn’t and I didn’t. And, we don’t salvage people. Salvage is what you do with scrap metal and trash.”

The lesson stuck. Ever since, he has been “sensitive to words and phrases, particularly when they are used in reference to patients, treatment, and circumstances surrounding recurrent disease,” Dr. Dizon writes. “I cringe when I hear someone referred for ‘salvage treatment’ or how it’s ‘too bad she failed therapy.’”

Do words matter? To patients and families, they often do because of the attitudes and expectations they convey, consciously or not.

Take the battleground metaphors so frequently used when speaking about cancer. British radio host Jenni Murray recently ranted about how “infuriating” it was to see and hear, over and over, the expression “lost his battle with cancer” in news reports of the death of Robin Gibb of the Bee Gees. She writes:

I’m at a loss to know why, despite a number of us who’ve been through the dread diagnosis and subsequent treatment pointing out that such pugilistic terminology is entirely inappropriate, we continue to be given the impression that death from cancer is somehow an indication of failure to have the moral fibre to fight and defeat it.

Not everyone who read the piece agreed with her, of course. “Self-indulgent, politically correct survivor’s guilt” was the judgment from one commenter.

Indeed, it’s hard to know at what point the line might be crossed. What’s offensive or even hurtful to one person can be a non-issue for someone else. But the fact remains that people do pay attention to language and often feel alienated or blamed by the words that are used.

Does it matter more when the words are those used by clinicians talking about their patients? Perhaps it does.

Anyone who’s ever been a patient has probably been taken a little aback when terms such as “problem list” and “chief complaint” are used to describe their visit. Like systems anywhere, the world of clinical care has its own language but the vocabulary is not necessarily understood the same way by patients and families. Take the phrase “comfort measures only,” for example. Those who work with dying patients know what this means, but what about patients and families? Do they focus on the “comfort” aspect or do they mostly hear the word “only” and feel the medical team has given up or abandoned them? When someone has “failed chemotherapy,” does this objectify or subtly shift the blame to the patient and allow the oncology team to distance themselves?

Dr. Dizon says his goal in writing about the language of medicine, especially in cancer care, is to encourage his colleagues to become more sensitive to the words they use and how they might be perceived by patients.

“Ultimately, our words should provide hope, comfort, and honesty,” he writes. “When they don’t, each of us has a personal responsibility to make things right.”

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.