Starting With Curious

So, the US lost to Germany, but still managed to advance out of the “Group of Death” in the World Cup by ending up above Portugal.  Lots of cheering and patriotic pride.  But right after the Facebook post of the photo of the American team and their fans celebrating were two other links that were rather sobering.

The first was the result of the latest Commonwealth Fund study showing that, once again, the US ranks dead last in health system performance among 11 advanced countries studied.  We’ve been in that position since the Fund first started doing these analyses in 2004.  Britain, Switzerland, and Sweden ranked first through third, respectively, on overall performance.  The highest score for the US was a 3 in “effective care.”  Interestingly, we ranked 5^th in “timeliness of care,” while Britain, with its much-maligned (at least in the American press) National Health System, ranked 2^nd in this measure of quality.  For access, efficiency, healthy lives (e.g., life expectancy), and equity – the US is right at the bottom.

Within our own country, the news for those of us here in Wisconsin was worse.  The Annie E. Casey Foundation released a report, “Race for Results: Building a Path to Opportunity for All Children,” on disparities in the US.  Based on an analysis of 12 different factors including educational attainment, socioeconomic status, and home life, Wisconsin was ranked the worst state in the nation for black children, and the state with the greatest disparities.  A few key data points:

• 77% of black children in Wisconsin (and 67% of Latino children) live in a household under 200% of the federal poverty level, compared with 29% of non-Latino whites
• Wisconsin scored lowest of all states (238) on its ability to prepare black children for educational and financial success; the average score was 345, while Hawaii had the highest score, 583. (WY, ID, VT, and MT, with very small African-American populations, did not have sufficient data for analysis.)  At the same time, Wisconsin was ranked 10th overall in its preparation for white children.

Knowing that socioeconomic and environmental factors are key determinants of overall health, these findings help explain some of the known racial disparities in health in our state.

Our vision for Children’s Hospital of Wisconsin is that the children of Wisconsin will be the healthiest in the nation.  Not only are we far from it, but even when we get there, is that enough?  Our health system doesn’t seem to be performing even as well as our soccer team.  According to the WHO ranking of all 191 nations, the US (at #37) is well behind Portugal (#12).  So much for making it out of the Group of Death.

When I was a resident, one of my least favorite things to hear from the parent of a patient was “Well, my mother thinks he has….”  The current equivalent is “I looked on the Internet and I found…”  Many of you know that fear of having to contradict grandma or Google, of the often lengthy and sometimes contentious discussions that would ensue.

Now along come new apps and devices that are only going to make this kind of conversation more common.  Examples include an iPhone attachment that turns the camera into an otoscope, and another that obtains an EKG.  In both cases, the image or tracing can be transmitted to a health care provider for interpretation, but naturally the patient and family have access to it as well.  Most electronic health records have some form of patient portal (such as Epic’s MyChart) that allows access to test results.

Health care, like many other sectors of the economy, is becoming democratized.  Patients are demanding a more active role in their care, a decades-long trend that is being facilitated and accelerated by advances in information and other technologies.  It is understandable that health professionals would, to varying degrees, lament or resist this change.  Our roles become, if not necessarily, harder, at least different.  I liken it to how the role of educators has shifted.  Teachers used to be the experts, valued for their ability to master a subject and convey information to passive recipients, usually via lecture and recitation.  In the early 20^th century, Woodrow Wilson introduced the concept of the preceptorial – education not as passive transmission of knowledge but facilitated discussion – which quickly became the dominant model at the university level.

Similarly, medicine is becoming less of a hierarchy and more of a partnership.  Providers need to be not only technically skilled, but able to serve as preceptors to patients who become active participants in their own health management.  We can bemoan or belittle the use of the Internet and other resources by patients and families seeking a greater role in their care, or the use of a smart phone to look in their child’s ears, but it’s not going away.  Our best bet is to guide them, so they can make good use of what can be at best confusing and at worst misleading information.  Last summer my son sent me this email:” I have a rash on my hands.  According to Google, I either have eczema or AIDS.  I hope it’s the former.”

At a national pediatric meeting a couple of years ago, one speaker contended that the area of “medical interpretation” – communicating medical concepts to the general public – would be one of tremendous growth in the next decade.  Undoubtedly there will be non-physicians who will do this, and do it well – I think, for example, of Rebecca Skloot, author of The Immortal Life of Henrietta Lacks – but it’s also part of our job as providers.  As an academic medical center, we embrace innovation and education; it should be just as true of our patients as our students and trainees.  As Sy Syms used to say, “An educated consumer is our best customer.”

James brought me a caterpillar the other day.  Never having met him before, I was impressed with this 10 year old’s gumption in bringing an insect on a milkweed leaf, unsolicited, to the office of the executive vice president of the hospital.  I was even more impressed when he started to talk.  James, who has spina bifida, has spent a lot of time at Children’s Hospital of Wisconsin.  But he’s pretty unimpressed with our clinics and operating rooms.  What gets him going is the park-like space across the street on the County Grounds.  Once the home of the Milwaukee County School of Agriculture and Domestic Economy, Asylum for the Insane, TB sanitorium, and poor house, among other things, the County Grounds is now largely occupied by the Milwaukee Regional Medical Center, UW-Milwaukee Innovation Campus, a golf course, and stormwater detention ponds.  But pockets of the grounds remain undeveloped, including the Monarch Butterfly Trail, where each year thousands of these beautiful and delicate creatures gather on their southward fall migration to Mexico.

James shared with me how he loves to visit the trail when he comes to the hospital.  It is a calming, healing place where he feels connected to the wider world.  It gives him energy.  As James’ mother said, “the County Grounds has become a refuge for our family.  Having a peaceful, natural place to escape to so easily has had a tremendous impact on the mental and physical well-being of everyone in our family.”  While the miracles of modern medicine have allowed James to walk, it is the miracle of nature that allows his spirit to soar.  James met with me to ask my support in developing a nature trail on the part of the county grounds nearest the hospital.  He described how kids like him would have a place to get away from the lights and sounds and smells of the hospital, and enjoy the trees, birds, and bugs, maybe even deer and coyotes!

There is a growing awareness of the power of nature to heal.  Children in particular seem to have a need for some “wildness” for their well-being.  Many hospitals have installed gardens: we have our own lovely Noel Family Healing Garden, for which many of our families are tremendously grateful.  Other hospitals have gone further, investing in more extensive adjacent nature trails. Mid Coast Hospital in Maine, for example, describes its 3300 feet of paths as a place of exercise and contemplation for patients and visitors (and staff).

James’ story rang true to me.  This week my dear niece, Finley Broaddus, succumbed to her brief and ultimately unsuccessful fight against liver cancer at age 18.  Always a passionate advocate for nature, she established Finley’s Green Leap Forward Fund, allowing family and friends to contribute to preserving and healing the planet in her memory.  A month ago, she left the hospital for the first time after six weeks.  When she went outside, she just sat in the grass and closed her eyes.  My mother-in-law described how she could almost see the Earth’s energy rise into Finley’s frail body, reanimating her and elevating her spirits.

I’m imagining a Wellness Trail, meandering through the woods and wetlands just a few hundred feet from the hospitals, and now easily reached by a pedestrian bridge.  A place where kids like James and Finley could wander, soaking up the healing energy of the natural world to complement the various therapies we provide.  And maybe seeing a hawk, or a deer, or a caterpillar.