Category Archives: doctor-patient relationship

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.

A clinician who looks like me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When the doctor doesn’t like the patient

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

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

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

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

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

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

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

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

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

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

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

A patient who:

1. Provides reliable history and information.

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

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

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

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

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

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

Hurt feelings: When the patient dumps the doctor

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One of my all-time favorite physician bloggers, Dr. Jordan Grumet, is making a big career change, and he wondered this week how many of his patients will be loyal enough to follow him to his new practice.

He’s learned from experience that some won’t – John, for instance, who arrived in his office several years ago with a cancer that had been missed on a CT scan. Dr. Grumet pursued the diagnosis, John was successfully treated and they had a doctor-patient relationship that lasted for several years, until Dr. Grumet moved to an office half an hour away and John declined to follow him.

“Without apology, he explained that he preferred someone closer,” Dr. Grumet wrote.

And yes, it hurt, he admits. “My sense of professional worth dropped a notch that day.”

Patients leave their doctors for many reasons, not all of them personal. Sometimes it’s because the doctor is no longer in their health plan network. Sometimes the patient or the doctor moves to a new location and the distance is too far, or transferring the medical record is an unwanted headache.

Other times it does become personal – when patient and doctor clash over a decision, perhaps, or a negative experience prompts the patient to bail out.

No matter the reason, however, it can be emotionally painful for a doctor to be dumped by one of his or her patients.

Somewhat surprisingly, this issue and its impact on the physician’s psyche have been little studied. One of the few pieces of research to date comes from Israel and contains a couple of interesting findings: Doctors were more likely to experience hurt feelings when the relationship was terminated by someone who had been their patient for a long time. It also hurt more when the patient was perceived to be someone of high social status.

The researchers came to these conclusions after asking 119 Israeli doctors to respond to four fictional scenarios involving a patient who switches doctors. As part of the study, the doctors also were invited to share their own experiences and reactions to being dumped by a patient.

Why would it hurt more if someone who had been your patient for many years decided to change doctors? Physicians feel vested in a relationship of many years’ standing, and a patient who comes back year after year is usually sending a signal that he or she feels vested too, the study’s authors wrote:

Thus, physicians may expect that patients will not end long standing relations for trivial reasons but rather that something serious has happened such as gross dissatisfaction with the treatment, or other serious reasons for extremely negative evaluation of the physician’s competence or behavior. Such thoughts would engender a heightened sense of relational devaluation and hence a higher level of hurt feelings.

That physicians also would be more bothered by the departure of a high-status patient is one of the more intriguing findings of the study. The researchers hypothesized that doctors may assume, correctly or not, that patients who are educated, well off and of good social standing are also better judges of the doctor’s professional competence and therefore more likely to have opinions worth valuing.

The personal stories shared by some of the doctors in the study revealed more nuances. Several of them described feeling hurt at investing great time and effort in a patient’s care, only to have the patient change doctors. One doctor had an entire family leave his practice over a single incident of missing a child’s ear infection; what made it hurt more was not being given a chance to explain. Notably, many of the doctors didn’t learn of the patient’s departure until after the fact.

Should it matter if a doctor’s feelings are hurt when a patient leaves?

These situations aren’t without consequences, the researchers wrote. They can lower the doctor’s self-esteem, accelerate the likelihood of burnout and perhaps spill over into relationships with other patients. Moreover, with increasing emphasis on patient-centered care, the doctor-patient relationship has become much more important and there’s greater pressure on doctors to earn the trust and satisfaction of their patients.

Patients don’t benefit by staying with a doctor when the relationship doesn’t work well or when it breaks down. But it may have an impact on the doctor when they bail out, especially if their departure is unexpected or ungracious. At its heart, medicine is still very much about interactions between human beings, the doctor as well as the patient.

The doctor’s dress code: professional, yes; piercings, no

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The physician’s attire isn’t necessarily a reliable indicator of his or her skill and competence, but patients do notice what docs are wearing and often judge them accordingly, a recent Canadian survey has found.

The consensus: People want doctors to look professional. Piercings and body art? Not so much.

The survey, which appeared last month in JAMA Internal Medicine, zeroed in on patient and family perceptions of doctors in hospital intensive care units.

A majority of the 300-some respondents agreed it’s important for doctors “to be neatly groomed, to be professionally dressed, and wear visible name tags, but not necessarily a white coat.”

They associated professional attire with honesty, knowledge and high-quality care. In fact this counted for more than the doctor’s age, gender or ethnicity. About three out of five preferred the intensive care unit doctor to dress professionally, and one-third frowned upon visible tattoos and piercings.

In another setting, such as a children’s clinic or an emergency room, dress code might not matter so much. But intensive care units are a different matter – more pressure-ridden and more demanding of the need for patients and families to quickly form a bond of trust with a doctor they may have never met before, the study’s authors said.

Dr. Selena Au, of the University of Calgary critical care department and lead author of the study, told the Canadian Press: “I think more than anyone in the hospital, that we are having very intense discussions where we’re talking about end-of-life care, where we may be talking about treatment options where decisions have to be made quickly. And so family members have to make some quick judgments as to whether or not they trust us… So things that are part of non-verbal communications come into play quickly.”

Some of this seems to happen at the subconscious level. The patients and families who participated in the survey didn’t look favorably on doctors wearing formal suits and ties in the intensive care unit, probably because they perceived them as less willing to roll up their sleeves and pitch in during a crisis.

In a commentary accompanying the JAMA Internal Medicine article, Dr. Rebecca Lesto Shunk of San Francisco Medical Center, puts it another way: “Maybe I am old fashioned, but I think the dress and appearance of health care providers should demonstrate professionalism and support a serious and sacred pact with our patients. By dressing and appearing professionally, we validate the significance of the relationship, acknowledging that we are not their barista, but a person to whom the patient entrusts their most private thoughts and concerns.”

Other studies have found definite opinions among patients about physician dress code. White coats seem to be falling out of favor, especially for physicians who work with children (although, interestingly, some studies have found that children are less intimidated by the doctor’s white coat than adults think they are). Neckties worn by male physicians are no longer de rigueur, and in fact there’s valid debate about the necktie’s propensity to spread undesirable germs. There also seems to be a generational divide in how people perceive the doctor’s appearance, with older patients more likely to appreciate some formality.

Is it frivolous to devote time and thought to how doctors should dress? Perhaps not, suggest the authors of a 2004 study on “The White Coat Effect.”

First impressions count, they write: “The clean, carefully dressed doctor might give the impression that patient contact is an important event and that it takes time to prepare for it, whereas the unkempt doctor can be perceived as unskilled and uncaring.”

They found that doctors in casual attire tend to be perceived as having less authority and are less likely to inspire trust. Their conclusion: “What would appear to be the most reasonable sartorial advice for doctors is to dress formally and to wear a white coat, but perhaps to remove the white coat in more socially delicate contexts.”

Dr. Erin Marcus of the University of Miami Miller School of Medicine found herself in a dilemma several years ago with a young resident physician who was smart, thoughtful and skilled but couldn’t refrain from wearing a low-cut dress. It was hard not to be distracted, Dr. Marcus wrote in a New York Times essay.

And she wondered: “Do patients and colleagues underestimate her abilities?”

Fairly or not, the doctor’s appearance ultimately is one of the ways patients judge clinical skill, she concluded. “Patients and colleagues may dismiss a young doctor’s skills and knowledge or feel their concerns aren’t being taken seriously when the doctor is dressed in a manner more suitable for the gym or a night on the town.”

Learning from the TV doctors

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You couldn’t help feeling a twinge of sympathy for Dr. Tyler Wilson in the opening episode of “Monday Mornings”, TNT’s new medical drama.

Wilson, a neurosurgeon, has made an error in judgment that resulted in a child’s death during brain surgery. Now he’s being pilloried at fictional Chelsea General Hospital’s weekly morbidity and mortality (“M & M”) conference, presided over by Dr. Harding Hooten who has a reputation for mercilessly dissecting every misstep by the surgery staff (he accuses a transplant surgeon of being “a vulture” for trolling the emergency room in search of potential organ donors).

Alas, there’s much this show doesn’t get right. The doctors are caricatures. The medical cases are melodramatic and outlandish.

Even the M & M sessions are over the top, observes a critic who should know – Dr. Barron H. Lerner, a professor of medicine at New York University Langone Medical Center. Dr. Hooten’s tactics were common once upon a time but nowadays the atmosphere at M & M meetings is more measured, Dr. Lerner wrote in the New York Times.

Doctors should admit their mistakes but the goal is to learn from error and improve the practice of medicine, Dr. Lerner writes. “Even the best doctors make mistakes. Impugning them publicly – or even privately – can make them clam up.”

What gives “Monday Mornings” its unique hook for drawing in viewers is the exploration of the darker side of medicine and how doctors cope with their mistakes and personal failings.

As recently as 10 years ago, this was mostly a matter for discussion behind closed doors. But times have changed, and an open approach toward acknowledging and understanding medical mistakes is supported by current research.

When this happens, organizations have an opportunity to learn and do better, Canadian researchers concluded last year. “Systems that provide healthcare workers with the opportunity to report hazards, hazardous situations, errors, close calls and adverse events make it possible for an organization that receives such reports to use these opportunities to learn and/or hold people accountable for their actions,” they wrote.

Health care also has been moving towards what’s known as a “just culture”, which seeks to find a balance between the all-too-human tendency to make mistakes, especially in the complex, high-intensity environment of health care, and the need to be accountable for safe practice.

It all makes you wonder, though: Where do patients and families fit into this? All too often they’re at the mercy of a system that’s prone to error and populated by personalities that don’t always like to admit how fallible they can be. And invariably it’s patients and families who pay the highest price when something goes wrong.

You don’t have to look far to find negative feelings and even considerable anger towards health care professionals when things go badly. Members of the ProPublica patient harm community recently took sharp issue with the term “second victim” that’s often used to describe the doctors and nurses involved in a serious error.

“It’s just wholly inaccurate because family members are the 2nd victims,” one commenter wrote. “Providers are at best 3rd victims.”

And although the majority of studies on disclosure have found that what patients and families want most after a medical error are 1) an honest, compassionate explanation; and 2) assurance that the health care organization has learned from the event, the evidence is scarce that this actually occurs with any consistency.

Where “Monday Mornings” does seem to get it right, more often than not, is in its portrayal of how the doctors respond to bad outcomes and to the families involved. Dr. Wilson is crushed by the death of his young patient, can’t stop ruminating about it and wants to tell the patient’s mother the truth – that her son died because the surgeon failed to obtain an adequate medical history that would have revealed a high-risk genetic condition in the child’s family background. Dr. Tina Ridgeway is shocked and defensive at being sued for allowing a resident to perform surgery that accidentally damages the olfactory nerve, ending the patient’s career as a chef. And this week we saw Dr. Sung Park rethink his truly awful communication style after being chastised at the M & M for mishandling the decision-making for a brain-dead patient.

In other words, they’re not all heartless and uncaring.

Nor is the show too far off the mark in depicting how families react when things go wrong – shock, grief, anger, insistence on knowing what happened and, in Dr. Wilson’s case, a mother’s unexpected effort to reach out and console him.

If art imitates life, the intersection among doctors, patients, families and bad outcomes is still pretty complicated but some of the barriers might be starting to come down.

The primary care doctor: someone who knows you

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Fans of Downton Abbey were stunned this week at one of the more shocking plot developments in the show’s three-year history: the death of young Lady Sybil Branson, who developed eclampsia after giving birth to her first child.

Besides the drama, the episode contained multiple health messages. One was the danger of preeclampsia,  less common today than in the 1920s setting of “Downton Abbey” but still a serious and sometimes fatal threat to pregnant women and sometimes to the infant as well.

Another was “VIP syndrome,” the tendency for doctors to defer to wealthy and/or important patients and their families, perhaps at the cost of exercising sound judgment. If Sir Philip Tapsell, the eminent obstetrician hired by Sybil’s father, Lord Grantham, hadn’t been so busy ingratiating himself with the aristocracy, would he have paid closer attention to the patient’s condition and heeded her husband’s pleas to get her to a hospital?

Finally there’s Dr. Richard Clarkson, the country doctor who has known Sybil all her life but whose urging for an emergency C-section is brushed aside – with fatal consequences, as it turns out.

Do patients truly fare better with a doctor who knows them well? This is one lesson from “Downton Abbey” that’s grounded in evidence: Having an ongoing relationship with a primary care doctor is seen as one of the best things people can do to ensure their health needs are understood, met and coordinated.

Here, for example, is how the Palo Alto Medical Foundation explains the importance of choosing, and staying with, a primary care doctor:

One of the best ways to make sure you’re getting excellent health care is to have a primary care physician (PCP) with whom you can build a long-term relationship – someone who knows your medical background and understands what’s important to you.

… When you have a physician you know and trust, you feel comfortable talking about anything. And, all your basic care – including routine exams, preventive care and treatment for illnesses and injuries – goes more smoothly and easily. Your PCP also knows when it’s best to refer you to a specialist.

Doctors themselves reinforced this in a survey carried out a couple of years ago by Consumer Reports. Of the 660 primary care doctors who participated in the survey, three out of four said a long-term relationship with a primary care doctor was one of the most important things their patients could do to obtain better medical care.

Here’s more of the evidence surrounding the benefits of primary care:

- In studies carried out in the 1990s, regions of the United States with an adequate supply of primary care doctors had lower rates of premature death from cancer, heart disease and stroke, even after controlling for lifestyle and demographic factors. Later studies also linked the primary care doctor supply to longer life expectancy and decreased incidence of low birth weight.

- Researchers have documented better outcomes for patients who have a primary care doctor as their regular source of care. This seems to hold true regardless of age, health status or whether the patient has insurance.

- People who had a usual source of care were more likely to receive treatment for high blood pressure and elevated cholesterol levels – both risk factors for heart disease – than those who lacked a usual source of care, according to a 2010 study in the American Heart Journal.

- A usual source of care, such as a community health center, also appears to help reduce the effect of disparities such as income, education and environment and improve health for these populations.

Specialists are needed too. Primary care cannot fix everything that ails the patient, after all. But many bereft “Downton Abbey” fans are probably wondering whether one of their favorite characters might have been saved if the doctor who had known her all her life had been allowed to make the decision.

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.

Pleasing the patient vs. saying no

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The patient in Dr. William P. Sullivan’s emergency room in suburban Chicago asked him to write a note excusing her from work because of an unsightly pimple on her nose. He said no, but later he wondered: Would the refusal, even if it were clinically and ethically appropriate, result in a ding to his department’s patient satisfaction rating?

“People get mad and you think, ‘Great. There goes another bad score,’” he said.

The anecdote is recounted in an American Medical News story that explores what seems to be a source of growing tension between doctors and patients: providing care that’s appropriate vs. pleasing the patient.

This is by no means a new issue. Doctors have always had to deal with patient expectations for care that are not necessarily warranted – antibiotics for a viral infection, for instance, or imaging tests with a low likelihood of yielding any useful information. What’s different these days is that physicians, and the organizations they work for, are increasingly being graded on patient satisfaction and paid accordingly.

From the American Medical News article:

Nearly two-thirds of hospitals, health systems and large physician groups have annual incentive plans for doctors, said an October 2011 report from the Hay Group, a Philadelphia-based management consulting firm. Sixty-two percent of those use patient-satisfaction metrics as a factor, up from 43% in 2010, said the survey of 182 health care organizations covering physicians in 144 medical specialties. Many set base pay lower and require doctors to meet performance metrics to earn hefty incentive pay.

“Bonuses of less than 5% don’t get anybody’s attention. Make it 5% or 10% or 15%, and that’s a sufficient financial opportunity to get your attention,” says Ron Seifert, vice president of the Hay Group. “We’re going to see more of this.”

To add to the motivation to get serious about patient satisfaction, Medicare also has begun paying for and publicly reporting performance measures. Patient satisfaction ratings account for 30 percent of the overall score; hospitals and physicians who fall short will see a percentage of their payments withheld. In other words, if patients are unhappy with the care they’re receiving, the penalty to providers will be a smaller paycheck.

Is patient satisfaction such a bad thing? It’s no secret that health care hasn’t always been well attuned to the patient’s perspective. In many ways, the emphasis on patient satisfaction is a long overdue effort to place the focus of health care where it belongs: on patients themselves. If providers consistently receive low scores from patients, it’s probably a sign that there are some issues in need of addressing. Tying it to financial incentives simply puts more skin in the game.

There’s valid debate, however, over the extent to which patient satisfaction ratings accurately reflect quality of care and how much they should influence the size of the provider’s paycheck. Are patients receiving quality care when the doctor agrees to their request for a CT scan for a headache, even though the imaging study is expensive, exposes the patient to radiation and is probably unnecessary? What about people who are likely to be unhappy regardless of the quality of the care they receive?

The connection between the doctor’s refusal of an inappropriate patient request and the likelihood of a low patient satisfaction score in fact is not entirely clear. That’s why a Wisconsin physician who specializes in addiction medicine is designing a study to examine this relationship more closely.

Dr. Aleksandra Zgierska, an assistant professor with the University of Wisconsin School of Medicine and Public Health, told American Medical News that decisions about prescribing narcotic pain medicine are a “day-to-day conundrum” in her practice. “The challenge is how do we discuss this with the patient so the patient doesn’t leave unhappy… Saying yes is easy. I know from firsthand experience that it’s very tempting,” she said.

Her study will look at the prescription of opioid pain medications and whether it correlates to patient satisfaction ratings.

Of the handful of other studies that have explored this issue, the one that has received the most attention appeared earlier this year in the Archives of Internal Medicine. It found that patients who gave the highest satisfaction ratings also had higher prescription drug costs, were more likely to be hospitalized and had worse outcomes – but the researchers could not definitively establish why this was the case. Although it might be assumed (and this indeed was the conclusion that many people seemed to draw from the study) that these patients were happier because they were receiving lots of prescriptions and hospital care, whether it was warranted or not, this remains just that: an assumption.

Turning down requests for inappropriate care may in fact not be the no-win situation that doctors fear, the American Medical News article suggests:

Experts agree that saying no does not have to mean an unhappy patient. They say that listening with empathy to a patient’s concerns, reviewing options in an evenhanded, nonjudgmental way, emphasizing the undue risks of nonbeneficial interventions, asking the patient to defer a decision, and even sitting down with the patient – instead of standing – can help.

It’s possible that many patients might actually welcome the discussion and ultimately leave the exam room feeling better informed about the decisions that were made.

The real issue seems to be one of balance. How can providers deliver quality care without compromising for the sake of a good patient satisfaction score? How can the patient experience be meaningfully valued without compromising other important measures for how providers ought to be paid? Regardless of the imperfect metrics that currently exist, these are questions that demand some thought.

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.