Starting With Curious

Sometimes a name does matter.  For example, Chilean sea bass has been one of the most popular seafood items on menus since the 1990s, when it seemed to have evolved out of the blue.  In fact, the species is millions of years old, but no one would touch it under its former name of Patagonian toothfish.  Similarly, you’d be excused for thinking that no one considered value in health care until 2006, when Michael Porter and Elizabeth Teisberg first promoted the term “value” in that context in their book Redefining Health Care.  (Indeed the now-ubiquitous phrase “value proposition” was coined in the business world only in 1988.)

But the concept of value, defined as health outcomes relative to costs, has been around for decades, under a different name: “cost-effectiveness.”  Traditional medical research compares two treatments in terms of comparative effectiveness – for example, whether the treatments differ in outcomes such as the number of deaths prevented, or successful cures.  A common outcome in such studies is the quality-adjusted life year (QALY).  This accounts for the fact that success isn’t really a binary variable, alive or dead.  It makes a difference being alive and healthy vs. alive and disabled.  Using sophisticated methods, patients can rank the relative quality of, for example, a year of life with no limitations, a year of life with moderate pain, and a year of life with limited mobility.  The efficacy of a treatment can then be expressed in terms of the number of QALYs.  Treatments that result in more quality-adjusted life years – i.e., better outcomes –  are more effective.  But if a treatment produces a better outcome, yet at a higher cost, how do you judge whether it is worthwhile?  That’s where cost-effectiveness comes in.  The difference between treatments is not expressed in QALYs alone, but in terms of the cost per QALY.  It’s not just outcomes, but outcomes relative to cost.  In modern terms, we’d call this value.

The term cost-effectiveness (which I will abbreviate as CE) became somewhat toxic when the results of CE analyses called into to question commonly-used but seemingly valueless treatments, and produced recommendations to avoid them.  To some conspiracy-minded folks this sounded suspiciously like rationing.  In addition, in keeping with the adage that one person’s trash is another person’s treasure, vested interests were threatened.  The demise of CE can plausibly traced to 1994, when the Agency for Health Care Research and Policy (AHCPR) – created during the first Bush administration for the purpose of creating evidence-based clinical practice guidelines – released its guidelines on management for low back pain.  Citing the lack of evidence to support the cost-effectiveness of surgical treatment, the guideline recommended non-surgical approaches.  Spine surgeons went nuts.   They successfully lobbied Congress to slash AHCPR’s funding and to rein in their mandate, changing the name to Agency for Healthcare Research and Quality (AHRQ) – no more policy!

Fast forward to 2010, when a new Congress was drafting the Affordable Care Act.  While desiring to promote evidence-based practice to reduce waste (like George H.W. Bush 20 years earlier), they were wary of the hysteria suggesting that death panels were on the horizon.  In an ultimately unsuccessful effort to appease these critics, the law created PCORI – the Patient-Centered Outcomes Research Institute – to provide patients and the public “information they can use to make decisions that reflect their desired health outcomes,” but explicitly forbade it from doing cost-effectiveness analyses.

Aside from the wonderful irony of the free-market proponents who were espousing consumerism and “value” at the same time prohibiting value-based analysis, a recent article in Health Affairs demonstrates some of the consequences of this decision.  (Disclosure – Dr. Glick, the senior author, was the one who taught me CE when I was getting my master’s in clinical epidemiology in the early 90s.)  The purpose of the study was to see if the ban on PCORI-supported CE matters.  Are there important differences in recommendations based on an analysis of simple effectiveness vs. cost-effectiveness?  The authors reviewed over 2000 CE previously-published analyses.  The good news was that in 81% of the cases, using either simple effectiveness or taking cost into account, you’d reach the same conclusion.*  One could conclude, then, that the congressional embargo on CE doesn’t matter that much, since using that method would only change the recommendation in 1 case out of 5.

However, the authors estimated the economic impact of recommending low-value care based on the 19% of analyses where the treatment that would be recommended based on simple effectiveness turns out not to be cost-effective.  The overall cost of such low-value care is $412 billion annually, or 14% of overall health spending.  That’s a lot of money.

The champions of value have, therefore, subverted the ability to deliver on value because of their aversion to cost-effectiveness.  Which is silly.  After all, tilefish tastes the same as sea bass.  If we want to find value and reduce waste in health care we need to look for it.  Under whatever name.

*(For the detail minded among you, it depends a little on how you define how much you are willing to spend for the given outcome.  Traditionally, CE analysis uses a cut-off of $100,000 per QALY gained.  If a treatment costs more than that, it’s not considered worthwhile.  Some experts have recommended thresholds that are either higher – you’d recommend a treatment even if it cost as much as $200,000 per QALY – while others have used cut-offs as low as $50,000.  In this study, changing the threshold leads to an agreement rate that ranges from as low as 68% to as high as 89%.)

Camping – I just returned from five glorious days of it in rural eastern Virginia – makes you see the world in a different way.  There is a greater intentionality to everything you do.  You have to consider and plan every sip of water, every trip to the “bathroom,” every bite of food.  As a break from contemporary urban living, that focused, mindful, pre-modern approach to everyday activities provides the kind of contemplation and relaxation that we all need to restore ourselves.

But when it’s your day-to-day reality, as it is for the poor in 21^st century America, it has the opposite effect.   Constant decisions about trade-offs under conditions of scarcity lead to chronic stress with adverse effects on health.  Poor diet only makes that worse.  In the 1930s, George Orwell wrote about the nutritional challenges for English coal mining families in The Road to Wigan Pier.  Much of what he described still holds true.  First, fresh food is relatively more expensive than processed “food” of dubious nutritional quality.  When confronted with a choice between an apple (assuming you can find it) and an apple pie, you’ll get way more calories per dollar with the latter.  Without adequate package information and guidelines, it can be difficult to understand the drawbacks of that decision.  Thus, for a parent trying to feed her children on an outrageously limited budget, the apple pie may seem like the rational choice.  Moreover, even with the right intentions, decision fatigue can degrade the quality of those choices.  It’s just easier to give in to temptation when you are stressed.  (And as an aside, let’s stop making it sound like this is some moral failing of poor people. It’s the same phenomenon that leads me to eat way too much ice cream after coming home from a shift in the emergency department.  Just because I can afford it doesn’t make me a better person.)  Junk food is also a way for someone without many other pleasures to treat himself.  You might not have the time and money for a movie or a massage, so how about a cupcake.

The societal and economic costs of the obesity epidemic are well known, as is the fact that obesity is a worse problem for the poor, especially poor children.  But given all the above, the food deck is stacked against them.  Two proven interventions make it easier for kids to get the right foods they need: the school nutrition program, and the Supplemental Nutritional Assistance Program (SNAP – aka food stamps).   SNAP for children in particular has been demonstrated to have long-lasting (as in decades!) benefits on health.  Yet recent efforts threaten to undermine both of these.  The School Nutrition Association, now a partially-owned subsidiary of the food manufacturing industry, has opposed the guidelines issued under the 2010 Healthy, Hunger-Free Kids Act.  And legislative efforts in several states, including Wisconsin, would restrict what could be purchased with food stamps.  Missouri, for example, would ban the purchase of fresh seafood (though canned tuna and frozen fish stick would still be allowed), while the bill in Wisconsin would limit purchases of such luxury items as nuts, potatoes, natural peanut butter, and bulk dried beans.  (Canned beans and sugar-added peanut butter are fine, though.)  Aside from being frankly punitive, these measures make it less likely rather than more that poor children will receive the most nutritious food possible.

Camping for a week is fun; living with those kinds of restrictions all the time is not.  Let’s not make it harder for those who have to.  If we truly believe that all kids deserve an equal chance at a healthy life, the place to start is by supporting programs of proven effectiveness that can give them access to one of the most important building blocks of health: real food.

By his own admission, it took Arnold Relman, former editor of the New England Journal of Medicine, until age 90 to realize the importance of nurses in providing quality medical care.  It took me until a week after starting my internship.  My first rotation was on 3 Orange, the unit for medically complex children (including many ex-preemies).  In many ways, medical school had not prepared me well for residency.  I had never ordered feeds for a healthy baby, much less one with a 27-item problem list.  My first night on call, covering the entire team, I was asked to order a refill on a medication for someone else’s patient.  I checked my sign out list and wrote (with a pen, on paper) the order; 10 minutes later, the nurse paged me to double check whether that was really what I wanted to order.  It wasn’t: I had mistakenly ordered a soundalike medication, at a dose that would have been harmful if administered.  Embarrassed, I returned to the unit to correct the order.  I made some comment about making a rookie mistake.  The nurse just smiled and said, “It won’t be the last, but don’t worry because we’re all looking out for each other.”

Relman, after being hospitalized for 10 weeks after a fall, wrote a column for the New York Review of Books about his experience, in which he said, “I had never before understood how much good nursing care contributes to patients’ safety and comfort, especially when they are very sick or disabled.  This is a lesson all physicians and hospital administrators should learn.  When nursing is not optimal, patient care is never good.”

Amen.  Over the years, I (and my colleagues) have been bailed out by nurses on occasions too numerous to count.  Mostly not because they caught errors – though in the era before computerized order management that was certainly important.  It’s the subtle change in a child’s behavior pattern that made the nurse call me to re-evaluate a patient who was developing hepatic encephalopathy.  It’s the funny movement that the consultant dismissed, which turned out to be decorticate posturing in a post-craniotomy patient.  It’s the question about why I selected a particular test that made me think through and decide on a different one that was just as good but less traumatic for the patient.  It’s putting a teenager with perplexing symptoms in a room and commenting, “She’s acting just like the aspirin ingestions we used to see,” arriving at the correct diagnosis hours before the physicians.  It’s the insight about family dynamics that allowed me to address concerns I might never have identified on my own.  The list is long.

It’s impossible to overstate my gratitude for all that the many nurses I have worked with over the years have done for our patients.  Their job is intellectually, physically, and emotionally challenging, with rewards that are hardly commensurate with the demands.  And I also appreciate what they have done for me: for my education, my professional development, and my job satisfaction.  We share food on the night shift, we laugh and cry together, we brag about and complain about our families, we encourage each other; we look out for each other.  Those interactions, those shared experiences, are the up button on the mood elevator.

Kids deserve the best.  With our nurses at Children’s Hospital of Wisconsin, they have it.

The common refrain these days is we are “too connected.”  By that, of course, is meant that by virtue of the Internet and the many ways of accessing it, people are too available.  In a wireless world, there is no refuge.  Even Meg Whitman, CEO at Hewlett-Packard (and, like 27% of the American public, a potential presidential candidate), complained about being stressed by always being “on.”

In the past week I’ve attended three events that made me realize that the issue isn’t being too connected.  It’s being connected to the wrong things, in the wrong way.  The events were: the annual scientific meeting of the Pediatric Academic Societies, the annual employee recognition dinner at Children’s Hospital of Wisconsin, and a meeting of the hospital’s Family Advisory Council.  Each of these had an ostensible purpose – presenting new research findings, acknowledging staff with milestone work anniversaries, or providing the voice of the family to guide hospital decisions and improvement efforts.  But each was also an opportunity for connecting, on an individual level, with other people, including colleagues, old friends, co-workers, and even some strangers.  Talking about shared professional or non-work interests, family, hobbies, crises, and much more, and through that finding those points of commonality.  Call it networking, socializing, schmoozing, whatever.  That act of being with someone, really being with them in a meaningful way, is what differentiates us from the server cloud.

This isn’t a rant against technology.  After all, many people can truly connect with others via phone or Skype or social media at least as easily as face to face.  But it is about making the time to establish and renew those connections.  It requires intentionality and focus.  It requires making time with others a priority.  It requires us to disconnect from one thing to connect with another.

At the scientific meeting, I presented some work showing high rates of burnout among pediatric emergency physicians.  In discussing this afterward, a few of were trying to distinguish stress from burnout.  I frequently feel stressed, but would never say I feel burned out.  After an evening with people with up to 45 years of experience at Children’s, and a lunch with parents who volunteer their time to tell us how we can do better, I realize that it is the connections with others that ground me and keep the stress from turning into burnout.  Jean-Paul Sartre famously wrote in No Exit, “hell is other people.”  But with the right connections, help is other people.