But… what did the patient want?

It’s truly a dilemma for the doctor. The patient’s test results are back and the news isn’t good. But it’s Friday afternoon and there’s a decision to make: Call the patient now or wait until Monday?

Dr. Lucy Hornstein, a family practice physician who blogs at Musings of a Dinosaur, wrestled recently with this question: “Here’s how I looked at it: either the patient got to spend the weekend not knowing, or knowing the worst but not being able to do anything about it for three long days. I elected not to ruin the weekend.”

If she had been on the receiving end of bad news, her own preference would have been to wait until Monday, she reasons. But she still wonders if she made the right decision for her patient, and asks her readers, “What would you have done?”

Some said it was the right call. Others weren’t so sure, however. One of the commenters summed it up this way: “At first I thought I’d do what you did, but then I thought that the decision probably needs to be based on who the patient is and how that person deals with things.”

Bingo!

One of the areas in which patient-centered care often stumbles is exactly these situations. We know what we would want so we conclude – no, wait, we assume – it’s probably what the patient wants too.

Applying our own filter to other people’s likes, dislikes, preferences and values is common to just about everyone. Most of the time we do it without ill intentions; it’s purely automatic.

I’d submit, however, that it’s an issue when it comes to something as personal as people’s health decisions.

At the core of shared decision-making is putting the patient’s values first. This sounds straightforward. In the real world, though, there’s often a huge leap from describing what shared decision-making should look like to actually making it happen.

I like the definition that appeared awhile back in Virtual Mentor, the ethics journal of the American Medical Association: “Shared decision making is an active dialogue between physician and patient with the goal of arriving at mutual understanding and agreement on a treatment plan.” (emphasis added)

It occurs to me that mutual understanding starts by getting a handle on how patients make medical decisions and what their preferences are for receiving information.

Do they want the unvarnished truth or do they want the discussion to be softer? How do they respond to scare tactics – are they motivated or are they turned off? Do they want to know everything or just the highlights? Do they want a high level of participation in their care or are they most comfortable with allowing the doctor to take the lead?

Doctors obviously can’t know any of this unless they ask. And since it seems unfair to expect them to explore (or remember) the patient’s preferences every time a decision has to be made, here’s a semi-radical proposal: Create a section within the medical record for the patient’s information and decision-making preferences – a values history, if you will, that documents key aspects that are important and/or helpful for the doctor to know, in the same way that social, occupational and family medical history are helpful for doctors to know.

Would this need to be a standardized, evidence-based tool? Not necessarily. Individual doctors or individual practices could develop something that works for them. Nor would it have to be lengthy or onerous, since getting to know the patient and his or her values is something that unfolds over time through a series of encounters and varying contexts, rather than as a single, static point of data collection.

It might be a good exercise for patients too, and could even help set the stage for better conversations about end-of-life care.

I can’t speak for Dr. Hornstein’s patient but I know what I would have wanted. I would have wanted to be told sooner rather than later, so I could have time to start absorbing the bad news and planning for what comes next.

I’m pretty sure I wouldn’t have faulted the doctor for waiting; she was motivated by the best of intentions. But think how much better this might have been if the patient’s preferences were known. The doctor wouldn’t have had to wrestle with the decision or second-guess herself, and the patient’s priorities would have been respected – no assumptions, no “this is what I’d want if it were me.” It would have been what the patient really did want, and it would have been shared decision-making.

DIY blood pressure management

What would happen if patients with high blood pressure were allowed to manage the condition with minimal involvement by a doctor?

A recent study gives support to the notion that when patients are given the opportunity to take charge of their care, many of them will successfully rise to the occasion.

OK, that’s reaching beyond what the study actually addressed. (Here’s the link to the Journal of the American Medical Association, where the research was published a couple of weeks ago.) But it offers an intriguing look at allowing patients a more active role in managing a chronic condition.

Short summary of the study: Researchers compared two groups of patients, one that received standard care for high blood pressure and one that monitored their blood pressure at home and self-adjusted their medication as necessary. At the end of one year, the self-monitoring patients achieved an average blood pressure reading of 128 over 74, while the group that received the usual care – visiting the doctor’s office at regular intervals to have their blood pressure checked and their medications reviewed and adjusted – had an average of 138 over 76. (High blood pressure is defined as consistent readings of 140/90 or higher.)

The researchers primarily wanted to find out whether the do-it-yourself approach is effective in managing hypertension, a significant risk factor for stroke, cardiovascular disease and kidney disease. In the U.S., about one in three adults has high blood pressure and only about half have it under control.

Based on the study’s results, self-management seems to be feasible, at least for some patients, in reaching the clinical goal of a healthy blood pressure.

There are a ton of questions that still need to be answered. Which patients might be the best candidates for a greater role in managing their blood pressure? What kind of education or support do they need for taking on this responsibility? Can patients continue to self-manage their blood pressure over a period of years or will adherence drop off after a year or two?

What really caught my attention, though, was the evidence that patients don’t invariably fail when they’re given more responsibility. Moreover, it’s possible for them to achieve good results. (It should be noted that the self-managing patients in the JAMA study weren’t entirely on their own; any adjustments they made in their blood pressure medication were part of an agreed-on plan with their doctor.)

Helping patients reach optimal blood pressure is one of the most common tasks carried out by primary care doctors. As you might guess, it consumes a great deal of time and resources. If patients who are capable of self-managing their blood pressure are given more latitude to do so, maybe it would free up the doctor’s time to concentrate on the more challenging cases and everyone would gain something.

“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.

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.

Flu shot options: a test of patient engagement?

Talking about the flu vaccine used to be straightforward. But with the proliferation of vaccine options, it has become much more complicated.

It isn’t even accurate anymore to call it a flu “shot”. The old-fashioned shot in the arm has been joined by intradermal and nasal spray versions of the vaccine. There’s now a quadrivalent form of influenza vaccine that protects against four strains instead of the usual three. Vaccines that used to mostly be available at the doctor’s office can now be obtained at community pharmacies, nursing homes, public health agencies, workplaces and even walk-in sites.

To add to this array, flu vaccine is not a one-size-fits-all proposition. The nasal spray can only be used among healthy children and younger adults. Ditto for the intradermal version. The new quadrivalent vaccine is thought to be more effective for children than adults.

More options for consumers = better for everyone, right? Well, yes. But here’s another way to look at it: With more choices that may or may not be appropriate for them, people increasingly need to take responsibility for educating themselves with accurate information.

This isn’t necessarily a bad thing. Patient engagement has become the Holy Grail of health care – desired, sought after, and the focus of intense effort by health care organizations. Care tends to be better and more reflective of the patient’s values when people are active participants.

The real question is whether we’re ready for this.

While some folks are eager to be more involved in their care, others need a strong nudge of encouragement. Some don’t really want to be engaged. Others are unable to be fully engaged. Nor can we underestimate how critical it is for people to have good information, the many myths about the flu vaccine – It’ll give you the flu! It’s full of toxins! – being a case in point.

This year’s flu vaccine season in some ways has become a real-world laboratory for the public’s ability to make informed decisions. People will have to ask questions and read the fine print. They’ll need to know which forms of the vaccine are available and which are appropriate for them and their family, and decide accordingly.

Are we up to it? We’ll find out.

Find the CDC flu vaccine guidelines here.

Clinician, wash thy hands: When the patient becomes the enforcer

As an intensive care physician at a hospital in Saskatoon, Dr. Susan Shaw is both comfortable and confident in the health care setting. But when she recently had to bring her daughter to the emergency room with a broken arm, “I couldn’t do it,” she blogged recently. “I couldn’t ask the nurses and doctor who looked after my daughter to wash their hands.”

If she was uncomfortable speaking up, what about the average patient and family?

Dr. Shaw’s experience illustrates an important and often overlooked issue in patient safety: the gap between what patients and families are told to do – “Remind providers to wash their hands” – and their willingness and/or ability to actually do so.

Hand washing is one of the key ways clinicians can avoid spreading germs to their patients and reduce the risk of infections acquired in the hospital setting. Yet health care workers often are inconsistent at washing their hands. In various studies that have attempted to measure hand washing compliance, the rate at some hospitals has been estimated at an abysmal 25 to 30 percent. Some studies have measured especially low rates among doctors and medical students.

No wonder, then, that patients and families have been enlisted in the campaign to help clinicians do better. But is the public any more successful in the role of enforcer than hospitals, medical clinics and nursing homes have been? It seems the answer is no.

A study that appears this month in the Infection Control and Hospital Epidemiology journal queried 200 patients about their awareness of the importance of hand washing and whether they would feel comfortable reminding nurses and doctors to wash their hands. The patients, all of whom were considered at higher risk for infections such as methicillin-resistant staph, were highly aware of the need for hand washing – but only 14 percent said they had ever spoken up and asked a health care worker to wash their hands. Moreover, only about half said they wouldn’t feel awkward asking a doctor to wash his or her hands.

Why such a gap between theory and practice? Based on her own experience, Dr. Shaw suggests some reasons:

I was worried about making the doctor and nurses feel uncomfortable. I knew my daughter’s care wouldn’t be compromised if I upset the doctor and nurses. I just didn’t want any awkward feelings.

Readers weighed in with similar stories of being too uncomfortable to ask – or of asking and being met with a grudging response. One person wrote, “When I did ask a nurse if she had washed her hands, I was greeted with a look that said to me I had been labeled a ‘difficult family member.’”

Indeed, more than a few health care professionals believe it’s not the patient’s or family’s place to remind them to wash their hands, as a study published a few months ago in the Archives of Internal Medicine concluded. Nearly one-third of the doctors and nurses who were surveyed said it was inappropriate for patients and families to have a role in this, and almost two out of five said they wouldn’t wear a button or sticker urging patients to ask them if they washed their hands. The reasons they gave: 43 percent said a reminder from a patient or family member would make them feel guilty, 27 percent said it would be humiliating and about 25 percent said having to stop and wash their hands in response to prompting by the patient would take too much time.

It all begs the question: Is it effective or even realistic to expect patients to help enforce hand washing compliance?

Patient and family participation is difficult to accomplish when the culture of a health care organization doesn’t openly encourage and support it, Dr. Shaw wrote. “I think it comes down to creating a new norm where healthcare workers clearly give permission to patients to expect and demand hand hygiene be part of care each and every time. This means focusing on the culture, behaviours  and attitudes of us as healthcare providers.”

There’s an even larger issue here, though, and it’s this: Should hand hygiene be a shared responsibility between patients and clinicians, or does it rest first and foremost with the health care professionals?

Dr. Shaw reflects: “What I learned from my experience is that is the responsibility of the care provider and the healthcare system to do the right thing every time for every patient without expecting patients to be the inspectors of our work.”

Perhaps we shouldn’t be asking how to make it easier for patients and families to speak up and remind clinicians to wash their hands. Perhaps we should be asking instead how to get clinicians to wash their hands every time without needing to be reminded by patients.

Pleasing the patient vs. saying no

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.

Movember: just another gimmick?

Take a look at the guys around you this month and count how many of them are displaying more facial hair than usual.

Chalk it up to Movember, a global charity event that invites men to grow mustaches during November to raise awareness and money for men’s health. According to the website, the initiative had more than 854,000 participants – they’re known as “Mo Bros” – worldwide last year and raised $126 million on behalf of prostate and testicular cancer.

Well, fair enough. After all, the entire month of October is devoted to breast cancer awareness and fundraising and all things pink. Maybe it’s time men had their own health month.

But the critics are cautioning: Don’t be too quick to get behind this health campaign without asking more questions about what’s really being accomplished.

What is the substance behind the “awareness” the Movember campaign says it promotes? Take a look at the list of Movember health tips, which include a recommendation to get an annual physical: “Getting annual checkups, preventative screening tests and immunizations are among the most important things you can do to stay healthy.” Nary a mention is made of the debate surrounding the value of the yearly physical exam. Nor is there discussion about the risks vs. the benefits of prostate cancer screening, an issue that’s of considerable controversy amongst the medical and scientific community, or how men can weigh the evidence to make appropriate, informed decisions.

Another health checklist on the website advises men 40 and older to talk to their doctor about the use of aspirin and statins to lower their risk of heart disease, even though the preventive benefit of these two therapies has not been clearly established in people who don’t have existing heart disease.

Most would agree men are well served by education that gives them accurate, realistic information about their health. Are they served as well by information that’s overly simplified or that fails to adequately convey evidence-based pros and cons? Or by messages that confuse screening with prevention?

Perhaps the bigger issue is whether Movember, which started out with good intentions, is turning into a gimmick that allows people to feel good about a cause merely by growing a mustache and donating a few dollars.

Blogger Ashley Ashbee calls it “a type of slacktivism.”

“Does your moustache share information about the importance of screening, or where to get screened?” she wrote last year. “Does it tell you how you can prevent prostate cancer (if you even can)? Does it tell you the symptoms? Does it tell you who’s affected?”

Moreover, critics say one of the flaws of catchy public awareness campaigns, whether they’re exemplified by mustaches or by pink ribbons, is that they can skew the public’s perspective about risk and disease and lead to inaccurate or exaggerated beliefs that sometimes spill over into health-related behaviors. Although prostate cancer is far and away the most commonly diagnosed type of cancer among men in the United States, it’s actually lung cancer that is responsible for the most cancer deaths in men. Heart disease continues to be a significant health risk for men and, many would say, is the leading male health issue. Men also outnumber women when it comes to alcoholism, fatal traffic crashes and suicide.

To their credit, the Movember organizers added men’s mental health this year to their list of causes. But whether this helps improve the public’s understanding about male health remains to be seen.

The Toronto Globe and Mail spoke last week to medical ethicist Kerry Bowman of the University of Toronto, who lamented, “There’s not a direct relationship between the diseases we hear most about and either their occurrence in society or the lethality and the amount of suffering they create.”

Ideally, there should be a form of “ethical triage” that helps the public be better informed about the most widespread and urgent health care needs before donating their money to a cause, Bowman said. But for most fundraising campaigns, this kind of analysis is “very much lost,” he said.

A cancer hero, fallen from grace

Two days after the news of Lance Armstrong’s fall from grace, I’m still not sure what my reaction should be. Disappointment? Disgust? Outrage?

Probably all three.

Not because he cheated his way to the top of the competitive cycling world, all the while steadfastly denying the doping allegations that dogged him – first in whispers, then in shouts – for years. Bad enough as this was, the real moral offense lies elsewhere: in leading everyone to believe in his amazing recovery from cancer, in accomplishing victories that inspired so many of his fellow survivors, when apparently all along his feats were artificially enhanced.

Were those Tour de France performances the real Lance Armstrong, the guy who battled back from testicular cancer that had spread to his abdomen, lungs, lymph nodes and brain, the guy who at one point was given only a 40 percent chance of survival? Or was his incredible comeback helped along by performance-enhancing drugs?

We’ll never know for sure. And in all honesty, I feel sort of betrayed by one of my own, because Armstrong and I belong to the same tribe: young adults who were diagnosed with cancer (in fact Armstrong’s diagnosis came a year after I completed treatment for lymphoma), beat the disease and returned to normal life.

The difference is that I didn’t cheat to do it while pretending to the rest of the world that my recovery was entirely the product of my own motivation and endurance. If anything, my life – like that of all too many other cancer survivors – has never gone back to what it used to be.

Truth be told, Armstrong has been a bit polarizing among some within the cancer community – not because of the long-standing doubts about whether he was doping but because he set the recovery bar so high.

This isn’t meant to diminish his accomplishments. Even without winning seven Tour de France races in a row, Armstrong would have been inspiring for his post-cancer career as a world-class cyclist – not to mention the founding of Livestrong, his charitable foundation that has done so much to offer help, hope and community to people with cancer.

Many survivors don’t fare as well as Armstrong, however. That cancer and the treatments for it are often accompanied by long-lasting and even permanent effects is one of the dirty little secrets of CancerWorld. It has only been within the last decade or so that the health community has begun recognizing this and trying to address it.

How people recover seems to be, at least to some extent, an individual outcome. Armstrong may have been better equipped than most, due to his training, physical and mental conditioning and perhaps even a genetic edge, as some research has suggested. Other survivors might not; does it mean they’re doing it wrong or not trying hard enough if they fall short of Armstrong’s level?

Perhaps the real issue has nothing to do with alleged doping and everything to do with the hero narrative. Armstrong gave us a shining example of overcoming adversity that turned out to be flawed. Maybe the correct response here isn’t outrage but forgiveness for placing the unreasonably high expectation on him of being everyone’s perfect cancer survivor superhero.

Why can’t the heroes be the survivors quietly showing up every day, working, going to school, raising families and being part of their community? Why can’t it be heroic enough to simply persevere through chemo brain, fatigue, nerve damage and the rest of the long-term cancer baggage?

For what it’s worth, it comes as somewhat of a relief that Lance Armstrong may be fading as the image to aspire to. Maybe now we can go back to more realistic expectations that embrace the still-rich human potential of life after cancer while remaining honest about the limitations.

Sharing the doctor’s notes

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.