5 health messages from Angelina Jolie

It’s been more than two weeks since actress Angelina Jolie revealed the bombshell story of her preventive double mastectomy, and I’m still trying to wrap my head around the implications.

This was a news item that was hard to miss, given the reaction and commentary it ignited. For those who’ve been out of the loop, here’s the story in a nutshell: Jolie went public with a New York Times essay on May 14, telling her story of recently undergoing a double mastectomy to lower her risk of developing breast cancer. Her mother died at age 56 of ovarian cancer and Jolie herself has the BRCA1 gene, heightening her chances of someday being diagnosed with breast and/or ovarian cancer.

“Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could,” Jolie wrote.

She explained that although the decision wasn’t easy, “I feel empowered that I made a strong choice that in no way diminishes my femininity.”

It’s a compelling personal story but the ensuing reactions made it clear there was much more to it than one woman’s choice. After a lot of reading, I saw these main issues that kept rising to the surface:

1. Genetic testing – helpful or not? Jolie urged women to get tested for the BRCA gene, especially if there’s a family history of breast and/or ovarian cancer. What’s left unsaid is that only about 1 percent of women in the U.S. have the BRCA1 or BRCA2 gene. To be sure, genetic testing could help these women weigh their options, but it may not be useful to the population as a whole. For women who test negative for the gene, it might even create a false sense of security, since the vast majority of breast and ovarian cancers are not tied to any obvious risk factors.

Nor is it enough to simply have access to genetic information; people also need guidance to help them make sense of the information and make decisions based on their own values and tolerance of risk.

2. Risk isn’t always perceived accurately. By undergoing a preventive mastectomy, Jolie was able to lower her risk of breast cancer from 87 percent to under 5 percent. But these numbers seem to mostly reflect the odds ratio, i.e. overall likelihood given a specific set of circumstances. They don’t necessarily indicate actual risk. Moreover, even a drastic measure such as a preventive bilateral mastectomy does not lower the risk to zero, nor does it lower the risk of developing other types of cancer.

3. Be careful of the anecdote. Personal stories resonate with people. Jolie put a human face on the ordeal of learning you have the BRCA gene and pre-emptively having both breasts removed. But this is one person’s story; the experience may be quite different for someone else.

Jolie writes that her surgery and breast reconstruction were complication-free. “The results can be beautiful,” she says. No doubt this is the case for some people but it glosses over the possibility of scarring, infection, repeat surgeries and all the other things that can make these procedures anything but beautiful.

4. Surgery to remove healthy body parts, even when heightened risk is present, is a drastic measure. Maybe this speaks to how Americans have been conditioned to fear breast cancer. Some of this fear may be justified. In spite of massive investment in research, treatment options remain limited for metastatic, or widespread, breast cancer. The fact remains, however, that it’s a very aggressive way to try to prevent disease.

Interestingly, studies going back at least a decade indicate that most women who undergo a preventive mastectomy are happy with their decision and feel less anxious about their risk for cancer. Unfortunately some of the public discussion about Jolie’s story has become muddled over the distinction between preventive mastectomy and mastectomy once cancer is diagnosed. These are two different things that cannot accurately be weighed on the same scale.

5. Individual medical decisions are exactly that – individual choices. I wouldn’t judge Angelina Jolie for her choice. Only she can determine what level of risk she’s willing to live with and what she’s willing to do to reduce that risk. For someone else, the decision might be entirely different.

The crux seems to be whether patients have accurate, realistic information and a good understanding of their personal values and preferences – a principal that applies in countless other health decisions, from whether to take a prescription drug to making end-of-life decisions. Maybe by sharing her story, Jolie has contributed to moving along a complicated conversation that needs to happen.

Health care’s new paternalism?

Is the patient’s blood pressure at 120 over 80 or below and controlled with one or more medications if necessary? Check.

Normal body mass index? Check.

Recommended screenings carried out according to the recommended schedule? Check, check, check.

But here’s the real question: Are all of these goals important to the patient, or does he/she see them as frustrating, burdensome and perhaps impossible to achieve?

The push toward better health care has organizations and clinicians focusing a tremendous amount of energy these days on patient outcomes. Few policymakers seem to have asked, however, where patients fit into this and how they feel about having their health goals – appropriate weight, appropriate blood pressure, glucose and cholesterol levels, appropriate prescription medications and so on – essentially dictated to them.

Is it going too far to call it a new form of health care paternalism?

If you listen closely, you can hear the beginnings of some pushback from people like Dr. Victor Montori of the Mayo Clinic, who last week talked to the Star Tribune of Minneapolis about hitting the pause button on all the checklists and having a heart-to-heart conversation with patients about what they really want.

An excerpt from the newspaper’s interview with Dr. Montori:

He argues that doctors must take into account the patients’ “values and preferences.” If one drug can bring their blood sugar down a notch, but doesn’t make them feel better, is it worth taking? “It’s making sure we don’t make any decisions about them without them,” he said. It’s a strategy that stops demanding perfection from patients and focuses on the treatments that are most important to them. “So they only get what they need and what they want.”

This is squarely at odds with the current approach of setting goals and measures and expecting all the players to reach these targets in order to achieve quality care.

There’s much at stake. By fiscal year 2015, fully 30 percent of Medicare payments to hospitals will be based on outcomes. Medical practices are dealing with similar pressure to reach specific goals in patient care.

This isn’t to say health care shouldn’t be held accountable for results. Outcomes do matter. But when an organization’s fiscal health and people’s livelihoods are on the line, it’s not hard to see why there would be a rising tide of all-around frustration when patients can’t – or won’t – meet the prescribed goals.

Meetings of the Rice Memorial Hospital board here in Willmar are normally rather subdued, but one of the most animated discussions I’ve seen in months erupted this week over the issue of patient adherence.

The doctors in the room spoke of the challenge of persuading their patients to adhere to the standard, and the frustration of being penalized when they don’t.

The hospital leaders in the room spoke of the unenviable task of being asked to meet goals that may hinge on patient decisions and behaviors beyond the hospital’s control.

The implications go deeper than this, though. What about hospitals who care for high numbers of elderly, frail and medically complex patients who may not have outcomes as favorable as that of a younger, healthy population? What about the 90-year-old who has been living with congestive heart failure for a decade and has decided it’s time to stop with aggressive management of the condition?

Should hospitals and medical practices become more selective about the patients they’re willing to take and start turning away those deemed to be too sick or too complicated or less likely to be compliant? Most Americans would agree it’s unethical (or at least unfair) to cherry-pick the “best” patients, but there’s no denying this looms as one of the unintended consequences of outcome-based payment. Left unanswered in all of this is who, exactly, will care for the sickest and most vulnerable when the reimbursement model is rigged against them.

Finally, there’s the issue of patient autonomy. The patient’s right to make his or her own medical decisions is one of the core tenets in American health care. This basic value seems to mesh uneasily, however, with performance-based payment. What happens to patients who don’t want to take a particular medication because the regimen is too burdensome or the side effects are intolerable? What about the patient who simply wants to feel better and function better rather than meeting specific target numbers?

To make things even more complicated, all of this is taking place simultaneously with a growing emphasis on patient-centered health care and shared decisionmaking.

It’s far from clear how this is supposed to fit together, or the extent to which the average consumer is aware of the push-pull between giving patients more say in their care, while at the same time deciding on their behalf what the measure of their health should be.

Don’t look for this to be resolved anytime soon. No one ever said health care was simple.

The problem of clinician overload

At the 45-bed hospital in rural Alaska where Dr. Janice Boughton is a hospitalist, her shift starts at 7:30 a.m. Here’s what greeted her when she arrived one recent morning:

The night shift doc told me about the 13 patients who I needed to take care of that day. Seven of the patients were new to me, admitted the night before. For those patients, I needed to review their medical histories in the computerized medical record and get to know them, with a focused physical exam and an interview to determine what needed to be accomplished in the hospitalization. For all of the 13 patients, I needed to review all of the lab tests completed in the last day and all of the radiological studies and check their vital signs and review the nurses’ notes about what had happened in the previous 24 hours. Each person had an average of about 30 blood test values and some of them also had microbiological results that needed to be reviewed.

And the day had barely even started.

For the next 12 hours she saw patients, reviewed tests and medications, dictated notes, updated medical charts, admitted two new patients from the emergency room, transferred two patients out of intensive care, answered the phone, did five bedside ultrasounds, talked to patients and families about end-of-life care, discharged patients who were ready to go home, discussed patient care with referring physicians and tried to track down incomplete test results from a pathologist.

No wonder doctors become frazzled by the amount of multitasking they’re required to do. “I love every little part of my day, but I don’t necessarily love trying to do all of it at the same time,” Dr. Boughton writes.

Patient care has always been demanding. But if you listen to clinicians when they talk about what their days are like, it’s clear there’s a rising tide of frustration with the overload.

Perhaps it’s no coincidence that around the same time Dr. Boughton wrote about her hectic day in the hospital, JAMA Internal Medicine published a survey that uncovered serious, quantifiable issues with the workload that many hospitalists experience.

Just over 500 hospitalists from across the U.S. took part in the survey, which was conducted online. Among the findings:

- 40 percent of the respondents said their patient load exceeded safe levels at least once a month, and 36 percent said this happened weekly.

- One in four reported that the excess workload often resulted in being unable to fully discuss treatment options with patients and families or answer their questions.

- About 25 percent said their workload affected patient care.

- 19 percent felt the heavy workload was detrimental to patient satisfaction.

The overload isn’t limited to hospital medicine. Nurses worry about high patient-to-staff ratios and the impact this has on patient care and safety. A study that looked at pharmacy workloads found that when pharmacists were overloaded, there was increased potential for error.

And when researchers tracked the workload at a private internal medicine practice in Philadelphia a few years ago, they found some startling statistics on how the physicians spent their day. Each of the five doctors saw an average of 18 patients per day, made 23.7 phone calls, received 16.8 emails, processed 12.1 prescription refills, and reviewed 19.5 laboratory reports, 11.1 imaging reports and 13.9 consultation reports.

It’s a recipe for harried providers, frustration, mistakes and ultimately professional burnout.

None of this is good news for patients who increasingly are having to make do with a smaller slice of the doctor’s time and attention.

Patients can help reduce some of the overload by being organized and focused when they talk to the doctor. They can help by knowing their health history and what medications they’re taking. They can quietly grit their teeth and be patient when a phone call isn’t promptly returned. They can show up on time to their appointment, because even though doctors are often late, the schedule gets further clogged when patients arrive late too.

This is only a fraction of the solution, however. Moreover, there’s a limit to how much should be expected of patients to help reduce the doctor’s workload. There are times, after all, when someone genuinely needs the extra attention.

No, the real problem lies with the system itself. Perhaps even more than cost or quality, clinician overload is a major – and often ignored – issue that threatens to swamp the progress toward better, safer care. And the near future doesn’t seem to hold many fixes.

For treating high blood pressure, more is more

If you have high blood pressure that’s under control, you’re in good company. According to a new report from the American Heart Association, just under half of American adults with high blood pressure now have the condition well managed with medication.

This is a major improvement compared to 10 years ago, when only one out of three hypertensive adults had their blood pressure under control. The gains also underscore a growing body of evidence that when it comes to successfully treating high blood pressure, more is more: Most patients just do better when they’re taking more than one medication for hypertension.

The report appears in the Circulation journal and is based on data collected from 9,320 participants in the National Health and Nutrition Examination Survey from 2001 to 2010. High blood pressure was defined as 140/90 mm Hg or greater (130/80 mm Hg for those with diabetes or kidney disease).

As chronic conditions go, high blood pressure is common, especially in people who are middle-aged and older. Although there’s often a perception that hypertension is becoming more widespread, the overall prevalence has been more or less unchanged for many years, hovering at around 30 percent overall of the American adult population.

What does seem to be changing is that people who are hypertensive are more aware of it. They’re increasingly likely to be told by a doctor or other health care professional that they have high blood pressure, and they’re increasingly likely to be prescribed medication to treat it.

Some telling figures from a brief published in 2010 by the National Center for Health Statistics: The overall percentage of adults with high blood pressure who were aware they had the condition rose from 69.6 percent in 1999-2000 to 80.6 percent in 2007-2008. And the percentage of those being treated with medication for it grew from 59.4 percent to 71.6 percent over the same time period. (The figures come from NHANES, the same source as the new American Heart Association report.)

Important as these measures are, however, what matters most is whether these people have their high blood pressure actually under control. This metric is what the Heart Association report examines, and despite the fact that there’s still often a gap between aspiration and success, the picture is encouraging.

What accounted for all this progress? The authors single out what appears to be the key factor: the growing use of multiple drugs for treating high blood pressure. Overall, the number of study participants taking multiple drugs for high blood pressure increased from 36.8 percent in 2001 to 47.7 percent in 2010. Outcomes tell the tale: The participants were much more likely to meet their blood pressure goals when they were prescribed two or more medications for hypertension.

Significantly, the survey also confirms progress in blood pressure control in the wake of new treatment guidelines, published in 2003 by the Joint National Committee, that call for greater use of combination drug therapy to achieve and maintain acceptable blood pressure levels. In other words, doctors have been taking these evidence-based guidelines to heart when managing their patients with hypertension.

There’s room for improvement, though. In the bigger picture, about half of Americans with high blood pressure still don’t have it under control. The researchers found that thiazide diuretics, recommended as initial treatment for uncomplicated hypertension, still aren’t being prescribed often enough.

The study authors also noted some worrisome disparities: Older adults, African Americans and people with diabetes or chronic kidney disease were more likely to fall short of blood pressure goals despite treatment. “More efforts are needed to close the gap between treatment and control and to maximize the public health and clinical benefits among those high-risk subpopulations,” the authors concluded.

The million-dollar question: Are you a team?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

About those clinic rankings

I know many of the local health care providers well enough to have a good idea of how they must have felt at seeing their favorable performance in a statewide ranking of medical practice quality, published this week by Consumer Reports. It must have been a really good moment for them.

My own reaction? A rush of smugness (or pride, perhaps) for being a patient at a medical practice that did so well.

But on second thought, this may not have been the best response, because it’s not really the purpose of rankings like these to enable people or organizations to feel superior – or, in the case of lower-performing clinics, to be singled out as sub-par. The purpose is to provide one of the many pieces of information that go into health care decisions – which clinic patients should choose and which doctor to see, what type of care an organization should provide and which internal systems should be created for delivering good care.

In an introduction to the special report, Dr. John Santa, director of the Consumer Reports Health Center Ratings, explains why it’s important to collect and share the data:

First, it generates conversations among doctors about changes they can make in their practices to lift the quality of care they provide to patients. And making this information available to patients leads to one of the most powerful forces driving improvement – educated health-care consumers.

The report points out that many factors can influence the performance of a given medical practice. Some of it depends on the patient population that’s served – whether the clinic sees a large number of people who are uninsured, for instance, or has a concentration of frail elderly individuals for whom aggressive disease management might not be appropriate.

A well-known name or suburban location doesn’t necessarily equate to the best care. Many of the top-performing clinics did not have a high public profile, and many were in rural Minnesota.

So how can consumers use the rankings in a meaningful way? What they should not do is flee from a medical practice that didn’t do so well in the rankings – at least, not without careful thought. The advice from Consumer Reports:

Instead, use our Ratings as an opportunity to talk with your doctor about how you can work together more effectively to manage your health. Ask what the practice is doing to improve its performance, and whether its scores are moving in the right direction. And remember that your participation is key, too. Your doctor can only make recommendations; you have to follow through on them.

There’s also the larger picture to consider. Minnesota Community Measurement, the main source of the data for the Consumer Reports rankings, tracks many other measures besides diabetes and cardiovascular care. Medical practices that are mediocre at managing diabetes might perform much better at managing asthma or depression or encouraging patients to follow through with recommended cancer screenings. A medical practice that earns an average ranking one year might improve significantly the next.

Finally, there are the intangibles. Are patients able to have a good relationship with the doctor? Is the staff competent and professional? Is the practice welcoming, and does it take patients’ special needs into account? These things are very difficult to measure but they can matter a great deal.

Perhaps the most important thing about the rankings isn’t the singling-out of who’s the best and who’s the worst. It’s the fact that there’s a useful rating system at all. Not that long ago, information like this simply wasn’t available – or, if clinics were tracking some of these measures internally, it wasn’t shared with the public. Now it’s out there for everyone to see, to talk about and to use the data as a spur for continued improvement.

What’s really remarkable – and something I’m not sure is recognized enough – is what it takes to achieve quality care. Because so much of the effort happens behind the scenes, patients generally don’t see it. Over the years, though, I’ve had glimpses of what’s involved and have come to realize the tremendous amount of work that’s required to earn a good rating. Sustaining this effort week after week, year after year, is even harder.

So, yup, we ought to feel good (and maybe indulge in a few moments of pride) when our clinic does well. Good performances don’t happen by accident.

Negative moments of truth

Regardless of what industry you’re in, customer service matters. But if a recent new study is any indication, it especially matters in health care.

The findings by the PwC Health Research Institute are pretty interesting:

- 42 percent of the 6,000 survey participants said personal experience, rather than price, was their most important consideration when choosing a health care provider.

- Personal experience was 2.6 times more important in choosing a doctor or hospital than for other industries, and peer recommendations were twice as important. (Banking, airlines and the retail and hospitality industries were among the industries used for comparison.)

- Six out of 10 health care experiences were defined by the attitude of the staff, making this twice as important in health care than in any other industry.

There are two conclusions to be drawn: Patients value having a good health care experience above all else, and they value it more than a good customer experience at, say, a movie theater or retail store. The report calls it “moments of truth” – the experiences that can cause customers to either love the organization or loathe it.

If I worked in health care, I would sit up and take notice of this survey. For organizations that already place a priority on patient-centered care and the patient experience, it validates that they’re on the right track. And for organizations that aren’t quite there yet, it’s a warning that they’d better start giving more consideration to what matters to their customers.

For what it’s worth, many health care organizations do get it right when it comes to the patient experience. It shows in details such as the receptionist who brings a form to the patient in the waiting room rather than summoning him or her back to the desk. It shows in the hospital housekeeping staff who ask, “Is there anything else I can do for you?” before exiting the room. It shows in the attention being paid nowadays to privacy and dignity, to explaining things to patients before sticking needles into them or subjecting them to a procedure. It shows in more courtesy, more respect and even more interest in what patients think via surveys and feedback.

Although plenty of health care organizations already did this to some extent, it was often hit-or-miss, and it tended to be seen as an added-on nicety rather than essential. This approach doesn’t seem to cut it anymore. The PwC survey found that people were not very forgiving of bad health care experiences – so-called negative moments of truth -  and one-third said they would switch providers if they thought they would have a better experience elsewhere. For those in health care who wonder why public sentiment is sometimes so angry and hostile toward them, this finding helps partially explain why. And as reimbursement increasingly becomes tied to patient satisfaction, the patient’s experience is going to matter whether providers are ready for it or not.

There’s in fact a fair amount of ambivalence in health care about how far the patient satisfaction thing can be carried. Does it mean that the patient’s every whim should be catered to, regardless of whether it’s medically appropriate?

Give health care workers a break, grumbled a registered nurse on the Hospital Impact blog: “It is difficult enough to deal with the increased acuity of illness of the patients but the demands the families are putting on the staff, wanting extra blankets for family, water, food, etc. are taking time away from their loved one. Where does it end?”

Yet is this really what’s meant by “the patient experience”? Or does the patient experience encompass something more?

An article appearing earlier this month in American Medical News tackles this issue by talking to Dr. Mark Friedberg, an internist and researcher at RAND Corp., who says clinicians can deliver good care while also providing a good patient experience. “I don’t think it’s unreasonable to ask clinicians to meet multiple goals,” Dr. Friedberg told American Medical News. “It is possible for highly trained professionals to be excellent in all respects.”

Of many nuggets of information contained in the PwC report, one stands out: Individual attitude is everything. Providing a good patient experience is partly about organizational culture but it also comes down to individual interactions between patient and staff. A handful of people who are caring and competent in their dealings with the patient can help redeem an organization that’s mediocre when it comes to the patient experience. Likewise, one staff person’s abruptness or missteps can undo everything else the organization is doing to improve the patient experience.

It’s not clear how well this lesson has sunk in. Recent new research by HealthLeaders Media suggests that although most hospital executives see the patient experience as a priority, more than half have yet to make a specific investment in bettering the patient experience in their hospital or health care system.

That health care is even talking about the patient experience, let alone making it a priority, is a measure of the progress being made. As recently as 10 years ago, it was only beginning to register on the radar screen in a meaningful way. But expect many more negative moments of truth along the way as health care struggles to change longstanding attitudes and practices in the business of providing patient care.

Clinicians and their spidey sense

The patient was 35, pregnant, diabetic and a methamphetamine user. Almost from the moment she was admitted to the hospital, Dr. Theresa Chan had an uneasy feeling this was a patient headed for serious trouble.

Scrambling to do rounds on her other patients and taking a quick glance at the woman’s X-ray, Dr. Chan’s unease grew. Although the ER physician who admitted the woman to the hospital gave a preliminary diagnosis of pneumonia, Dr. Chan had some doubts and decided to see for herself.

Her blog describes what happened next:

As I walked into her room, I felt a hair on the back of my neck rising up. Not literally, of course. The hair – and it is only one – has become the symbol for the feeling I get when a patient is really sick. It sprouted during the second year of my residency and has been with me ever since.

To make a long story short, the patient turned out to have inflammatory fluid that had collected in one of her lungs and developed an infection. She could hardly breathe. Within the hour she had a chest tube inserted by a surgeon. She ended up being transferred to a tertiary care center and ultimately lost the pregnancy.

“The moral of this case: Whatever anyone tells you, check the facts for yourself,” Dr. Chan concludes.

Do clinicians have a spidey sense, like the comic-book superhero Spider-Man, that tells them when something is really wrong with a patient?

The pitfalls of relying on perception are outlined in an interesting analysis published online last month in the Journal of General Internal Medicine. It examines a specific area of clinical practice: judging whether a patient is truly getting better in response to treatment.

How do you know the patient is improving? Is this an assessment based purely on test results? Is it based on how well the patient looks? Is it a combination of objective measurements and gut instinct? And how do you avoid misjudgments due to overconfidence, memory lapses, unspoken assumptions and other thought processes that can cloud one’s thinking?

There’s a intriguing role played by clinical intuition – the gut sense, often based on a vague combination of sight, sound, touch and past experience, which helps clinicians recognize when a seemingly minor problem might actually be much more, when the diagnostic facts don’t add up – perhaps even when the patient is a faker or a drug-seeker.

Is it the real deal? Clinical intuition is a somewhat controversial concept in medicine. It’s not clearly defined and it’s not something that’s part of any formal training curriculum. It seems to be more well developed in some people than others, although few clinicians are willing to follow their intuition alone, without objective facts to back it up. And as the journal article demonstrates, gut instinct can be prone to all sorts of cognitive errors.

Yet the spidey sense seems to be genuine, even if it’s hard to pin down. ‘I know it absolutely exists and I am happy to have a decent dose of it,” writes the anonymous ER nurse who blogs at Not Nurse Ratched.

So what is spidey sense? “Your patient just looks wrong. Or DOESN’T look wrong, but you have a gut feeling that something is about to go seriously wrong,” she writes. “Generally, and this is really the point of my post, you’ve got nothing to hang your hat on as far as an assessment finding or anything from the patient’s history, and that makes spidey sense problematic.”

Sometimes the spidey sense generates a false alarm but better to be safe than sorry, she concludes. “If the patient doesn’t look quite right and that’s all I’ve got, I use it. I feel a little silly, but I do.”

Various studies have taken a closer look at the role of intuition in medicine. Empathy, for instance, may be partly intuitive, although there’s still a fair amount of debate over the extent to which it’s innate vs. a skill that can be taught. A small study conducted in 2007 found that nurses often use intuition in their decision-making, and that their use of intuition tends to increase with experience. (The study didn’t analyze how often the nurses’ intuition turned out to be correct, however.)

“Do we need evidence for everything?” wonders Dr. David Hunter in a 2010 American Orthoptic Journal article that questions the assumption that objective, measurable evidence should underlie all medical decisions. “The frequent lack of solid clinical evidence requires clinicians to invoke critical thinking, communication, judgment, and even intuition on behalf of their patients. Medical training is as much an apprenticeship as it is an education, and medicine as much as craft as it is an art.”

Evidence does matter; clinicians can’t make good decisions if they lack facts or knowledge. But it seems there’s a place for intuition as well, even though there’ll likely be debate for years to come on how reliable the spidey sense truly is.

Stalking the elusive wait time

How long do patients really have to wait to get an appointment with the doctor?

It’s not as easy to measure as you’d think, especially since health care organizations use wait-time yardsticks that are often narrowly defined and can vary widely.

The U.S. Department of Veterans Affairs recently came under fire for allegedly misrepresenting how long it took for veterans with mental health issues to see a provider. Using its own internal measures, the VA had reported that 95 percent of new patients requesting mental health services were seen within two weeks for a comprehensive evaluation. But when the Office of the Inspector General investigated the numbers more closely, it found that fewer than half of veterans were seen within that time frame and the average wait for the rest was 50 days.

Why the discrepancy? Some of it seems to lie in how the data was collected and how scheduling was handled, Stars and Stripes explained:

For new patients, scheduling clerks frequently stated they used the next available appointment slot as the desired appointment date for new patients, thereby showing deceptively short wait times. For established patients, medical providers scheduled return appointments based on known availability, rather than the patient’s clinical need.

The VA is working to improve its scheduling processes and come up with better – and more accurate – measures for reporting wait times.

This isn’t an issue confined to the VA system. From the family doctor’s office to the medical imaging center, health care is grappling with getting a handle on access. How many days, or weeks, does it take for someone to see their doctor? How long is the wait to see a specialist?

Some of it seems to depend on where you live and the care you need. A survey last year of eye patients, for instance, found that the vast majority were able to schedule an appointment within two weeks of calling an eye care professional. Seventy percent were able to book their exam within a week or less.

When Merritt Hawkins conducted a survey of 1,160 medical practices in more than a dozen metropolitan markets three years ago, it uncovered a wide range of responses. Someone in Miami might wait anywhere from four days to 200 days to see a cardiologist for a heart checkup, while the wait for someone in Atlanta ranged from one day to nine days. People in Boston and Philadelphia sometimes waited a year to see a dermatologist for a routine skin exam. Among all the cities that were surveyed, the combined average wait time to see a family doctor for a routine physical was just under three weeks.

Wait times seemed to be influenced by many factors: physician supply, patient demographics, patient demand, insurance trends and even the U.S. economy. Indeed, a shortage of mental health professionals is probably at least one of the reasons behind the long waits for veterans needing mental health care from the VA.

It’s clearly hard, however, to pin down exactly how long patients must wait for an appointment, and there seems to be no agreed-upon yardstick for how this should be measured.

Sometimes it can get downright confusing and perhaps a little deceptive. Many emergency rooms, stung by complaints of patients and families spending hours in the waiting room, have taken steps to fast-track the care they provide, even going so far as to issue promises – backed up by billboard advertising – of half-hour waits or less.

You’d better read the fine print, however, because the 30-minute wait time might not apply to you if your situation isn’t considered an emergency. And you’d better check to see how the promised wait times are calculated. When the Miami Herald explored some of the marketing claims, it found that some ERs measured wait times as a four-hour average recalculated every 30 minutes, others measured it in one-hour increments and some urgent care centers measured it in 30-minute increments.

And although ER spokespeople told the Herald that they take their wait time service pledge seriously, they also admitted it’s an approximation that may vary for individual patients.

An even bigger question is how wait times should be benchmarked. How long, exactly, should patients have to wait between the time they make an appointment and when they actually receive care? What’s acceptable and when might a delay become unsafe?

“Is cancer treatment urgent?” wonders Kathy Day, a nurse and patient safety advocate in Maine who last year faced an agonizing wait between being diagnosed with endometrial cancer and seeing a surgeon. It took her nine days to decide on the specialist she wanted to see. It took another four days to get an appointment. Although her personal doctor told her she should have surgery “within a few months,” Day acknowledges the waiting is difficult and worries that it might affect her prognosis.

She writes on her blog:

On November 1, I was given an appointment on November 30. Tomorrow it is 28 days (4 weeks or 1 month) since I learned of my cancer. November 30 will be 41 days. Then I don’t know how long after that my surgery will be scheduled. That “couple of months” recommendation is frittering away. I honestly never dreamed I would have to wait a full month to see an expert GYN/oncologist for surgery.

How do you measure the wait time in this situation? Does the clock start ticking only when the appointment is made? What about the time patients might need to choose the doctor and then make the phone call? What about additional waits between the time the patient sees the doctor and when he or she undergoes a test, has surgery or receives lab results that help confirm a diagnosis or determine a course of care?

The process isn’t swift, and there are reasons why it can’t always be swift. How health care organizations measure their wait times is often far from straightforward, however, and there can be a wide gap between what providers think their wait times are and the amount of waiting that patients actually experience.

Making the investment in maternal health

In between shopping for a Mother’s Day card for my mom and browsing my recipe collection for a nice dessert to make for her this weekend, I came across Save the Children’s annual State of the World’s Mothers report.

The report delivers a cold, hard dose of reality about what motherhood means for many women worldwide: difficult, risky and uncertain in outcome. Health, education and economic indicators were analyzed for 165 countries with the following results: Norway was ranked the best nation in the world to be a mother; Niger was the worst. The United States? It ranked 25th among the 43 developed nations that were included in the analysis.

This year’s report zeroes in on nutrition during the critical 1,000 days at the beginning of life – from pregnancy through a child’s second birthday – and the global prevalence of malnutrition among mothers and babies.

Worldwide, the main nutritional threat to mothers and children isn’t obesity; it’s too few calories and the consequences this has on health. The report found, for instance, that more than half of the world’s children do not have access to the “Lifesaving Six”: iron folate supplementation during pregnancy, breastfeeding during the first six months, complementary feeding, vitamin A supplementation, zinc treatment for diarrhea, and adequate access to water, sanitation and hygiene.

The report explains why this is so critical:

Alarming numbers of mothers and children in developing countries are not getting the nutrition they need. For mothers, this means less strength and energy for the vitally important activities of daily life. It also means increased risk of death or giving birth to a pre-term, underweight or malnourished infant. For young children, poor nutrition in the early years also means irreversible damage to bodies and minds during the time when both are developing rapidly. And for 2.6 million children each year, hunger kills, with malnutrition leading to death.

The disappointing ranking for the United States was based on its poor showing at creating an environment supportive of mothers who breastfeed. This includes maternity leave laws and workplace policies that give women time to nurse.

Pregnancy, childbirth and infancy certainly are safer, at least in the industrialized world, than they used to be. At the start of the 20th century, for every 1,000 live births in the United States there were six to nine women who died of pregnancy-related complications and 100 infants who died before their first birthday. By 1999, thanks to improved education, public health measures and a higher standard of living, the mortality rate had fallen drastically – by 99 percent for mothers and 90 percent for infants.

These figures obscure some troubling facts, however. Maternal mortality actually has been increasing in the U.S., and at a faster rate than in any other developed nation. Nationally, deaths attributed to obstetrical causes within one year of giving birth rose from 7.6 per 100,0000 to 13.3 per 100,000 – this in a country that spends more per capita on maternal health than anywhere else. It’s in fact safer to give birth in Bosnia or Kuwait than it is in the United States.

The reasons are unclear. Part of the apparent increase may be due to improvements in data collection. But other factors may be involved as well: mothers who give birth later in life, when pregnancy- and childbirth-related complications are more likely; higher rates of caesarean deliveries and repeat caesareans that increase the risk of placental complications; and higher rates of diabetes, high blood pressure and other health risks among pregnant women. Some observers also believe the medical world has failed to successfully adapt its practices to a change in the paradigm, from young, mostly healthy women who give birth to mothers whose age, health status and background are more diverse and complex.

A report issued by Amnesty International in 2010 points to yet another cause: economic disparities and lack of access to health care for many U.S. women of childbearing age. It notes that among African-American women, the death rate from pregnancy-related complications is nearly four times that of white women, and that this disparity hasn’t budged in 20 years.

The most shameful fact about maternal and infant mortality? That the majority of these deaths, whether in developing nations or in the wealthy industrialized world, are considered preventable. The most common causes of death during delivery – uncontrollable bleeding, infection, high blood pressure, obstructed labor – can all be addressed with access to appropriate medical care. Improved nutrition for both moms and babies can make a big difference. So can factors such as alcohol use and tobacco exposure during pregnancy – and the list goes on and on.

It seems there’s still a long way to go before Mother’s Day is truly healthier for mothers and infants worldwide.

Photo: Wikimedia Commons