“I found my diagnosis on the Internet”

Raise your hand if you’ve ever gone online in search of a diagnosis that fits your symptoms or to read everything you can find about a condition you’re dealing with or a new medication you’re taking. Now raise your hand if you’ve ever talked to your doctor about what you’re reading on the Internet.

The Internet has made a bottomless well of information readily accessible to anyone with an online connection. But it seems we’re still figuring out how to incorporate this fact into the doctor-patient relationship in ways that allow everyone to feel comfortable with it.

Doctors tend to cringe when patients show up for an appointment with a stack of printouts from the Internet.

Patients tend to resent it when the doctor ignores or dismisses their personal research.

Doctors may not mind their patients’ efforts to become more informed but they don’t always trust the patient’s ability to recognize whether a source is reputable.

Patients want to know how to evaluate a source’s credibility but they don’t know where to start.

These are some of the impressions I gathered earlier this week from a health care social media chat on Twitter that focused on, among other things, that pesky pile of printouts in the exam room. (For those who haven’t discovered the weekly tweetchat, it takes place every Sunday from 8 to 9 p.m. central time; follow along at #hcsm and brace yourself for an hour of free-wheeling, fun and insightful discussion.)

 

 

 

 

 

 


So what are we to glean from all of this? Although there doesn’t seem to be a single right way for patients to share health information they’ve found online, some approaches may be more helpful than others.

Most doctors don’t have time to wade through large stacks of printouts, so patients will probably have more success if they stick to summaries and as few pages as possible.

How the topic is introduced seems to matter. Is it an open-minded exchange or is it an argument? Is it respectful of each other’s perspective? Doctors have greater medical knowledge and hands-on experience but patients are the experts when it comes to their own experiences.

One of the conundrums is how to sort the wheat from the chaff. There’s a lot of questionable health information floating around online, but if patients haven’t learned to critically evaluate what they’re reading for accuracy and credibility, they can easily be led astray by misinformation. On the other hand, it’s hard for patients to develop these skills if their doctor is dismissive of their efforts and unwilling to provide coaching or guidance.

Frankly, the train has already left the station on this issue. A 2009 study by the Pew Research Internet Project found that looking for health information online has become a “mainstream activity.” Sixty-one percent of the adults who were surveyed said they used online sources for health information, and one in 10 said that what they learned had a major impact on either their own health care or how they cared for someone else.

But here’s another interesting finding: Patients whose doctors encourage them to search out health information online are, on average, more engaged in their care and more satisfied, regardless of whether they and the doctor agree on the information. In other words, it’s the participation and the open dialogue that really matter.

Quibbles over whether patients should talk to their doctor about health information they’ve found online are no longer the point. It’s time to move on to the bigger issue of how to have these conversations in the most beneficial way possible.

Learning to give bad news: the patient’s perspective

After Suzanne Leigh’s daughter, Natasha, died from a brain tumor, her mother wrote an essay about “What I wish I’d said to my child’s doctor.”

One of her pieces of advice was to ban junior doctors from sitting in while sensitive, emotional conversations took place. She wrote, “When emotions are high and we are at our most vulnerable, we don’t want to be politely scrutinized as if we were lab rats – even if it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.”

My last two blog posts were about training doctors to deliver bad news and the benefits (or not) of scripting to help them through a difficult conversation. Where are patients supposed to fit into this? Suzanne raises the human side of the medical teaching process – that patients and families are often drafted into being practice cases for students, many times willingly but sometimes with awkwardness, reluctance or downright resentment.

It’s not an easy balance, though, between respecting the needs of patients and families at a supremely vulnerable time while creating opportunities for students to learn and gain skills. And it’s this balancing act that touched off a contentious online debate after Suzanne’s essay was reposted late last week on Kevin, MD.

It started with a medical student who wanted to make it known that although the patient’s and family’s wishes should come first, observation is one of the ways that students learn the difficult art of giving bad news.

It is not about scrutinizing the parents during the conversation; rather it is about seeing our mentors perform an essential skill that we will very shortly have to put into practice on our own. When patients and families are comfortable allowing us in on those conversations, we are immensely grateful, as it is really the only way we can learn an immensely difficult skill.

A blanket ban on junior doctors? One commenter called it “tantamount to saying ‘I want my child to benefit from the superior care that is available in a teaching hospital, but I think an important aspect of that teaching should be abolished, since it made me personally feel uncomfortable.’”

As you might guess, the discussion started to get lively.

Knowing when to refrain from judging and graciously leave the room is a learning experience too, wrote one commenter.

Should the need for training ever outweigh a family’s discomfort with having an audience during a difficult conversation? wondered someone else. Is it fair to lay guilt on people for saying no to the presence of a doctor-in-training in the room?

Another commenter, apparently a doctor, suggested that a family who requests privacy during one of these conversations “probably has a lower level of coping skills.” (What? Maybe privacy is just their preference.)

I’m not sure there ever can be a consensus on the right way to do this, other than that it’s a tough balance between the needs of the individual and the needs of society, in this case the value of a doctor who has learned to communicate well and skillfully when bad news is involved.

What’s consistently missing is the voice of patients and families themselves.

Doctors in training may learn from observing more experienced clinicians during a difficult conversation but this is only one side of the transaction. How was it perceived by the patient and family? After all, what seems empathetic to an observer might not meet the patient’s definition of empathetic. On the other hand, there’s no one-size-fits-all approach to the art and skill of delivering bad news, so how do doctors learn to tailor what they say and how they say it without unintentionally giving offense?

Medical students might learn a lot from patients and families about giving bad news – what makes the situation worse, what makes it better. If we need a better balance between real-life training opportunities for students vs. allowing difficult conversations to belong to the patient and family, why not invite patients into the education process instead of debating their obligation to do so?

Emotions by rote: when empathy is scripted

Something bothered me last week while blogging about teaching medical students to deliver bad news to patients.

Although training and practice can help develop and reinforce effective, empathetic communication skills in medical students as well as doctors, I kept having the nagging thought that this wasn’t the whole story. Is delivering bad news merely about following the six steps of the SPIKES protocol? Would I want a conversation involving bad news to be packaged as a carefully learned formula? Don’t patients sense the difference between rote platitudes and genuine caring?

Then… eureka! an article appearing in the New York Times the same day captured it exactly.

Dr. Timothy Gilligan, co-director of the Center for Excellence in Healthcare Communication at the Cleveland Clinic, and Dr. Mikkael Severes, director of the leukemia program at the Cleveland Clinic, nailed it: Doctor-patient communication isn’t something you can readily force or script or reduce to “10 Easy Techniques For Demonstrating Empathy.” Although good communication is an essential skill for any health care practitioner, it should be real, not faked.

From their article:

No communications course will magically transform lifelong introverts to hand-holders and huggers. At the same time, we must ensure that we are not converting people who genuinely care about their patients into people who only sound as if they care. Having physicians sound like customer service representatives is not the goal.

For those doctors who are emotionally challenged, communications courses can provide the basics of relating to other human beings in ways that, at the very least, won’t be offensive. But for the rest of us, we should take care to ensure the techniques and words we learn in such courses don’t end up creating a barrier to authentic human contact that, like the white coats we wear, make it even harder to truly touch another person.

As one of those “lifelong introverts”, I take exception to the implication that introverted clinicians need fixing so they can give more hugs. Introversion and good communication are not mutually exclusive, and introverted doctors may in fact be better than many extroverts at listening to their patients.

But Drs. Gilligan and Severes raise important questions about the degree to which empathy can be taught and the unintended consequences of trying to program clinicians into better communicators.

Reactions to their article were almost as fascinating as the article itself. A sample:

- “Patients usually come to us because they hurt. They’re suffering, and most of their suffering isn’t from tumors or low platelet counts; it’s from their own normal emotions in response to being sick: depression, anger, confusion, loneliness, anxiety, and so on. We might be able to fix their lesions, but we can address their emotions only by listening to them, and that’s a more sublime skill than repeating, ‘Go on’ or ‘How does that make you feel?’”

- “Providing education and skill sets to improve communication will only go so far. Addressing issues around emotional intelligence is the core of the problem.”

- “As a physician, I find It amazing that anybody could write about problematic interactions between doctors and patients without noting the 2,000 pound gorilla in the room: what our healthcare system pays doctors for. The less time doctors spend with each patient, the more patients they are able to see and the more money they can make. If you pay doctors the same whether they talk to patients for five minutes or 45 minutes, guess which they are most likely to do.”

- “Most of these technically brilliant but interpersonally stunted doctors are either married, have friends, and successful careers, meaning that they must have some social skills. I’m not sure the issue has anything to do with being introverted or geeky. I think it might have a lot to do with arrogance and not seeing the patient as a person.”

I’ve heard some health care workers say scripts help them stay focused, especially in difficult situations. Others find scripts restrictive, even a bit silly, and would rather allow the conversation to flow naturally.

What do you suppose patients and families prefer – empathy that’s clumsily expressed but sincere, or all the right words with no feeling behind them?

Learning to give bad news

Bad news awaited the patient as she recovered from surgery… but the first person to enter her hospital room while she anxiously waited for the pathology report wasn’t the doctor, it was a medical student.

Could this situation have been handled better? Kyle Amber, a fourth-year student at the University of Miami Miller School of Medicine in Miami, Fla., writes about the experience in a recent issue of Academic Medicine, the journal of the Association of American Medical  Colleges:

“Is it cancer?” she asked, as if completely unfazed by the three hours she waited to be seen at this busy clinic that treats patients with poor access to care. All I could reply was, “The resident will come into the room in a few minutes to discuss the findings with you.” Let down, she nodded and told me she understood. Even as I attempted to comfort my patient, I knew it would take quite some time before a resident would be able to see her in this busy teaching clinic. An hour after I had left the room, the resident walked into the room, introduced himself to the patient, and told her that the pathology demonstrated a widely disseminated Stage IV cancer.

If the patient is about to receive bad news, the first person in the room should not be a medical student, he concludes. “This is no way to deliver bad news.”

Breaking bad news to patients and families is one of the most difficult tasks for a doctor to undertake. It’s stressful, and few physicians ever look forward to it or truly become comfortable with it. Yet at some point during their training, they have to confront it.

How do you teach this skill to medical students? There’s a fair amount of debate in medical academia over whether empathy can be taught. Students can learn and practice communication skills, however, that help increase their comfort level as well as their competency. The evidence also suggests that training can help instill awareness and behaviors that make it less likely for bad news to be delivered in ways that are insensitive or devoid of compassion.

At one time, doctors received little if any formal training in how to communicate bad news. They mostly learned by watching more seasoned mentors carry out this task. Hopefully they saw good examples, but maybe they didn’t. These days, medical schools are recognizing it’s an important skill for students to learn and most training programs have incorporated it in their curriculum.

But there seems to be an unwritten rule that medical students should never, ever be the bearer of bad news in a real-life clinical setting. That responsibility lies with more senior colleagues who are directly involved in caring for the patient.

It’s tough, then, for a medical student to be placed in the position of being with a patient who has been waiting for hours to hear the outcome of her surgery, yet be unable to do anything about that patient’s most immediate need – the need for information. Sometimes a student’s most memorable lesson is about how to handle things differently next time.

The language of health care

Awhile back, I wandered into an Internet discussion about the use of the word “non-compliant” to describe patients who didn’t follow the doctor’s instructions or take their medications as directed.

Don’t use that word anymore; the correct and less judgmental term is “non-adherent,” one person wrote.

A home health nurse shot back: She’d been using the term “non-compliant” for years, there was nothing wrong with it and she wasn’t about to change, thankyouverymuch.

Health care has a language of its own. Not just the technical words, although there are plenty of them. No, this language consists of ordinary words used in ways that convey certain shades of meaning. Sometimes patients are confused by it, sometimes they’re offended, and sometimes it subtly reinforces the paternalism and power imbalance that have historically existed between health care professionals and their patients.

Were your test results “negative”? Breathe a sigh of relief, because negative results in most cases are positive news for the patient. If the doctor notes that your symptoms are “unimpressive,” it’s not meant to be denigrating, it just means you’re having symptoms that aren’t severe or pronounced. That abbreviation in your chart that says “s.o.b.” doesn’t indicate what you think it does; it just denotes that you’re having shortness of breath.

As you venture farther into this terrain, it gets trickier. Why, for instance, do patients “deny” having chest pain or whatever other symptoms they don’t have? (One of my newsroom colleagues says that whenever she hears this term, she pictures a conversation that goes something like this: “You have chest pain!” “No, I don’t!” “Yes, you do!”)

What is an “incompetent” cervix, and what kind of value judgment does this term imply?

Does it matter what words we use? Are they just a neutral collection of letters and syllables with no deeper meaning? Or is the language of health care more than this?

As patients become more engaged in their care and the doctor-patient relationship becomes more of a partnership and less of a dictatorship, the language has correspondingly come under greater scrutiny. In this brave new world, do doctors issue “orders,” or do they provide “instructions”? Do they talk about collaboration or do they make all the decisions?

The whole debate over the use of the word “compliant” illustrates the extent to which the sands have been shifting. Although the term is still frequently used, critics point to its connotations: obedient, submissive, acquiescent, yielding, docile. In short, not the words many people would like to see associated with the doctor-patient relationship. The term is increasingly being replaced by “adherent,” which sounds vaguely like it might have something to do with duct tape but at least doesn’t appear to carry some of the same emotional baggage as its predecessor.

It might seem like political correctness run amok. But words often do matter, and they can influence our thinking in ways we might not realize. For instance, it’s common to record the reason for the patient’s visit to the doctor as the “chief complaint” - a rather psychologically loaded term, since the patient might not literally be complaining and might in fact be reluctant to complain in the truest sense of the word. Does the use of this word create subtle attitudes about patients and perhaps consign them to an unwanted role?

What about the common practice of referring to the patient’s current history of ailments, issues and chronic conditions as a “problem list”? Does this invite doctors and nurses to view patients as a collection of problems in need of fixing? Does the focus on “problems” make them overlook other aspects of the patient’s health in which he or she is doing well?

What does it mean when the patient “didn’t tolerate the procedure”, and whose fault does this imply?

I’m not sure whether these terms ought to be replaced, or what we could replace them with. There’s no vocabulary police in health care, after all, and no real consensus on what the best words should be. In any case, it’s a moving target. The debate over “compliant” vs. “adherent” isn’t going to go away any time soon, and within a few more years the favored term could drop out of favor in exchange for something better.

Occasionally, however, attention to language results in real change. At one time, patients who were in pain were said to “complain of pain.” It’s a phrase that can be freighted with emotion and value judgment, however, and health care providers began to realize that many patients with treatable pain weren’t speaking up because they didn’t want to appear to be complaining. With heightened awareness of this issue, providers began using the term “reporting pain” instead. This more neutral language is now so widespread that it has become rare, at least in the professional literature, to find references anymore to patients “complaining of pain.”

And occasionally patients themselves put the medical community on notice that some language is unacceptable. Karen Parles, executive director of the Lung Cancer Online Foundation, fired off a letter a few years ago to oncology specialists about the commonly used phrase “the patient failed chemotherapy.” She wrote:

Have the patients really “failed” when chemotherapy drugs do not work? Of course they haven’t. So why use a phrase that implies blame?

… This unfortunate convention is used in the medical literature, at professional conferences, and not surprisingly, in the clinic. It is common for oncologists to tell patients that they “failed drug X.” By telling patients they failed to respond to treatment, doctors may increase the guilt that many patients already struggle with as a result of their cancer diagnoses. For others, like me, it becomes an annoying refrain. At minimum, it puts emotional distance between doctor and patient and undermines the doctor-patient relationship. Just imagine under the same circumstances if the patient said to the doctor, “You failed to give me the right drug to treat my cancer.” The question isn’t who failed, but what failed.

Dr. Bruce Chabner, the editor-in-chief of The Oncologist, responded with an apology and a thank-you to Parles for pointing out “the all-important use and impact of our words.”

“I assure her that I have expunged ‘that phrase’ from my vernacular… and I urge my colleagues to do likewise,” he said.

This post originally appeared on Nov. 4, 2009.

Making friends with the patient portal

I’ll disclose this up front: I’m a big fan of the concept of allowing patients online access to their medical information through a patient portal. Family members who live in the metro area have been using portals for a few years, and now this feature is available locally too.

Patient portals are promoted as a tool to help patients become more involved and engaged in their care. It’s still a little early to know whether this actually is the outcome; portals just haven’t been around long enough to build up a strong body of evidence in their favor.

At the very least, though, they make it easier for people to find out their lab results, double-check their prescription medication list, etc., by simply logging into their personal account. No need to make phone calls or leave messages. No waiting for results to arrive by snail mail. And seriously, is there anything more annoying than to be told only that your lab results or X-ray were “normal”? Show me the numbers, please.

Not that there aren’t naysayers. Many folks haven’t been very impressed by their experience with patient portals – for example, health communication guru Steve Wilkins, who recently was introduced to the portal offered by his doctor’s practice and was underwhelmed. He can send messages to the staff and request appointments and prescription refills but apparently not much else. “Asking is certainly different than doing in my book,” he reflected. “How the heck is this supposed to make me feel engaged?”

I’ve heard other complaints that some portals are very restrictive in how patients are allowed to use them, thereby limiting the benefits.

A couple of thoughts: First, patient portals won’t instantly remove all the obstacles in doctor-patient communication. They’re a tool, and their success will partly depend on people’s willingness and ability to use them as intended. I think there’s going to be a learning curve before the benefits become apparent. In the meantime, everyone needs to be somewhat patient and not demand results like, right now.

Second, simply offering a patient portal doesn’t automatically mean it has value, as Wilkins points out. Practices that only allow a handful of non-interactive features on their portal will probably be disappointed when few patients sign up or actively use the portal… but they really shouldn’t be surprised.

My prediction is that engagement will be highest when the portal 1) has multiple features that appeal to patients and create a useful tool for health care self-management; and 2) is actively promoted by medical practices as something their patients ought to try.

Patient portals might sound like nothing more than a new technological spin on the exchange of information that has always taken place between doctors and patients. But the reality is that they’re helping shift the fulcrum of engagement toward the patient. Our medical information was always available to us but it was often presumed that it didn’t have to be shared unless we asked to see it. Now the presumption is that of course our information will be shared without first having to ask for it. See the difference?

Dumbing it down

When the handouts from the hospital downplay, gloss over or don’t even mention the potential for bad things to happen, a patient can be excused for feeling totally blindsided to find out a complication is serious enough to require surgery.

How do I know? Because it happened to me. And to say I felt misled by the vague, sugar-coated generalities contained in the patient literature is an understatement.

The focus on health literacy is both welcome and necessary. Far too much about health care is arcane, difficult to understand and not explained well to patients, especially those who have difficulty reading or for whom English is not their primary language. But there’s another side to this issue: the risk that in the drive to simplify health information for patients, we’re going too far.

I’m not the first person to ask this question. I’ve heard the same concern from health care professionals who worry that the basic facts, while important to convey, aren’t always enough to truly arm patients with what they need to know.

Dumbing it down has consequences. At best, it can confuse patients about what their symptoms or side effects might mean and what, if anything, they should do about it. At worst, it can put them in harm’s way.

More than this, it has the overall effect of lowering the bar for what’s expected of the patient. “Don’t dumb down diabetes!” declares blogger Allison Blass at Lemonade Life. She describes a recent focus group meeting during which she shared the data methods she uses to help manage her insulin for her type 1 diabetes, only to be told, “You seem very tech-savvy but what about the average diabetic?” Her response:

Understanding diabetes is a daily battle. This disease doesn’t make a bit of sense most of the time and I will be the first person to admit that I don’t always do what I am supposed to do. But I don’t understand how providing someone with less information about their health is supposed to help them? And I don’t understand why it is such an extraordinary thing to encourage people to read, ask questions, be educated and know all they can about their disease.

One aspect of this is the rather patronizing don’t-you-worry tone that often pervades the handouts and written information for patients. This faux reassurance, with its dumbing down of patients’ emotions, can be very misleading. It can give patients the impression that their symptoms are no big deal, and it can leave them unaware or unsure of when something is serious enough to need medical attention. It also puts patients at a serious disadvantage in communicating with the doctor and ensuring that a complication or side effect is being appropriately addressed. Rare complications are, by definition, rare, but they do happen, and patients are ill served by information that condescends to them rather than enables them to recognize when to take action.

In the bigger picture, dumbing it down can blur or erase many of the nuances that need to be part of the public discussion. A prime example: the attitude that screening for disease has preventive value and is invariably beneficial. On some level, and in some circumstances, this is entirely true. But screening and prevention are not the same thing. Moreover, screening has limitations; it’s not 100 percent accurate, it doesn’t necessarily change the course or outcome of a disease, and sometimes it results in patients undergoing unnecessary treatment.

Understanding this could help Americans have more realistic beliefs about what screening can – and can’t – accomplish, and might help them make health care decisions that are more informed. This level of understanding won’t happen, however, if the discussion stays mired in generalities sheerly for the sake of keeping it simple.

To be fair, most health care professionals, at least the ones with whom I’m acquainted, prefer it when patients participate in their care and make an effort to be educated. But many of them also struggle with where to draw the line. If you tell patients too much, will they be overwhelmed? Will information about potential complications or side effects scare patients away from necessary treatment? Or will people just tune it out?

Not everyone wants, or is able, to handle the same amount of information. It’s a genuine challenge – maybe even impossible – for health care professionals to find out and keep track of each patient’s preference for knowledge.

This shouldn’t have to mean, however, that we automatically default to the lowest common denominator. Keeping it simple isn’t always the right answer, nor is it always in the patient’s best interests. It’s a lesson some of us have learned the hard way.

This entry was originally published Nov. 3, 2010.

Every move you make, the patient is watching you

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

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?

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.