Starting With Curious

Today’s supermarkets in many ways are something out of a 1960s science fiction story.  Bar code scanners and payment via cell phone (not to mention the cell phone itself) are just two things that would have seemed a bit far out back when I was watching the original Star Trek.  But that’s nothing compared with genetically modified organisms (GMOs), those agricultural products that arise when genes are transferred between species.  GMO corn and soy, for example, contain a gene from a bacterium that makes the plant resistant to herbicides.  The idea of taking a gene from a soil bacterium and transferring it into a corn plant seems so routine now, it’s hard to remember how mind-blowing it was not too long ago.

All of the available evidence (which is considerable but by no means exhaustive at this point) suggests that the products of this genetic engineering themselves pose no harm to human health.  That’s good news.  But it’s more complicated than that.  There remain important ethical and ecological issues.  And, as discussed in a recent editorial in the New England Journal of Medicine, there are potential indirect health issues that have not been previously considered.  For instance, the “Roundup-ready” GMO corn and soy (which make up the vast majority of those products in the US today) allow farmers to use large amounts of the herbicide glyphosate, which has now been shown to be a likely carcinogen.

At the very least, people should be able to choose whether they want to purchase a product that contains GMOs.  For myself, I choose not to because I don’t want to support the use of toxic herbicides, or the corporate agriculture system.  Others may doubt the evidence of the safety of the products themselves (which for the record I don’t), or may simply be squeamish about moving genes between species.  The idea that consumers should be allowed to choose – and need to be informed to be able to do so – is behind the move by several states to require labeling of products that contain GMOs.  64 other countries already do so, including the entire European Union and Brazil, a country with a substantial GMO-based agricultural sector.  The US Congress, however, recently passed a law proscribing a federal requirement for such labeling, and also prohibiting state or local governments from enacting any such requirement.  This prohibition has been pushed by Big Ag, using the argument that they shouldn’t be required to label products that are shown to be safe.

That’s beside the point.  We label the fiber content of clothing – no one is claiming cotton or silk are unsafe.  It’s just that I should know what a shirt is made of so I can decide which one I want.  If something is unsafe we shouldn’t be labeling it, we should be removing it from the shelves.  Labeling isn’t about safety, it’s about consumer choice.

During those 1960s Star Trek episodes, in the New York area, I frequently saw commercials for Syms, a men’s clothing store.  Sy Syms, touting his low prices, would say “An educated consumer is our best customer.”  That concept wasn’t too far out then, and it shouldn’t be today.  I wish Monsanto and its subsidiary, the House of Representatives, saw it that way.

I was thinking about one of those late night philosophical discussions from 35 years ago –  the kind you tend to have your sophomore year in college.  My roommates and I were arguing over whether beauty was objective or “in the eye of the beholder.”  (It was in the context of music, so perhaps “in the ear of the beholder” would be more accurate.)  What triggered my recollection was an article in this morning’s New York Times about a fashion photographer who started a non-profit called Positive Exposure.  The organization’s aim is “to transform perceptions of people living with genetic, physical and behavioral differences, both among the public and health care professionals.”  The article is accompanied by a strikingly beautiful  collection of photos of people with a variety of conditions that don’t mesh with our conventional concept of beauty.

The landmark Americans With Disabilities Act was signed into law 25 years ago this week.  In the quarter-century since then, our public places have become measurably more accessible, and I believe there is greater acceptance of the idea that people with disabilities can and should contribute as fully as possible in all facets of society.  What I don’t know is whether there has been commensurate progress on attitudes toward those with disabilities.  Is the situation like that of black Americans, where physical and legal barriers have simply been replaced by less visible ones of mind-set?  Or, as the photo essay in the Times suggests, are we starting to actually see the people behind the disabilities as, well, beautiful?

“I love working here, and I love what I do. I love to clean. Cleaning is in my blood!” one of the environmental services attendants animatedly told me the other night while I was rounding in the hospital. Wow. I’ve said one of my goals is for people here to have joy at work, and here I was seeing it in full bloom. Now, I can’t honestly say everyone who works here would claim to be joyful – far from it. We do have a pretty engaged staff, and one of the things that first attracted me to Children’s Hospital of Wisconsin is the deep sense of purpose and commitment to providing kids with the best and safest care that I saw in virtually everyone who works here. At the same time, this can be a stressful environment. We operate 24/7/365, we deal with emotionally difficult situations, the pressure of dealing with sick children can be intense, and as a not-for-profit organization we don’t always have all of the staff and other resources we’d like to have. So acknowledging room for improvement, all in all I think people here are pretty content.

But talking with that enthusiastic member of the cleaning staff reminded me that contentment isn’t quite the same as joy. I don’t want to be satisfied with my job, I want to love my job. I want it to be meaningful and fulfilling. What does it take to go from satisfaction to joy at work? Paul O’Neill, former Alcoa CEO and Treasury Secretary, and a member of the Lucian Leape Institute at the National Patient Safety Foundation, identifies three key factors:

1. Am I treated with dignity and respect by everyone?
2. Do I have what I need so I can make a contribution that gives meaning to my life?
3. Am I recognized and thanked for what I do?

What strikes me about this is the fact that much of what determines whether we derive joy and meaning from our work is not about the organization itself, but about colleagues and co-workers. While having sufficient resources to get the job done is important, it’s at least as much about how we treat each other, in a spirit of collaboration and integrity.

So as I pore over the results of our latest employee engagement survey, I’ll be thinking about what I can learn so that more people will be as joyful about their work here as that EVS attendant I met the other night.

Looks like caring about the environment is cool again.  There’s the new encyclical from Pope Francis, polls showing Americans increasingly rate climate change and other environmental concerns as important, and craft brewers coming together to support clean water.  As if we need more evidence, yesterday we had the kick-off meeting of the Children’s Hospital of Wisconsin sustainability task force.  Twenty volunteers from all different parts of the organization and all different roles got together to start the process of assessing where we are with regard to sustainability, and suggesting targets for improvements.

We started the meeting with each person introducing her- or himself and talking about why this is important to them.  A common theme was concern about the impact we as individuals and organizations have on the planet.  Many people talked about how they take care to reduce, reuse, and recycle at home – they want to be able to do the same at work.  A few commented on the imperative for Children’s as a community leader to set an example and use our practices as an opportunity to educate children and families about how they can improve their own sustainability.  It was clearly a deeply personal, sometimes even spiritual, motivation for most of us.  At the same time, several people noted that reducing waste also a way to reduce expense, thus linking environmental and financial sustainability – a concept known as the triple bottom line, or “people, planet, profit.”

Whatever their inspiration, I am so grateful that so many people care enough about our organization and our environment that they are willing to share their passion and energy to help us reduce our impact on the planet.

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.