Does conventional medicine "colonize" patients?

This morning I had a micro-"aha" moment. I caught a glimpse of insight into why the health care industry, providers, and patients remain tangled within such a complex (and deadly) riptide. This is by no means a finished thought, just an attempt to draw on the essence of one well known historial framework to understand where we are today:

• Could conventional medical culture be understood as a system of "colonization"?
• Working within that conceptual framework, are educated health care providers colonized to an equal degree as patients?
• How has the "colonization" (and resulting fragmentation) of health care providers and their patients served the interests and the longevity of the Colony?
• What would it take to disrupt the colonized settlement?

While some health consumers call for revolt, revolutions, and rights, the truth is that they (like providers) remain dependent on the very goods and services supplied by the Colony.

Would open and free access to data disrupt that dependency? How?

***

Hat tip to @NancyShute for the inspirational coffee we had this morning.

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Farms and fields and family

This morning we drove out to Sugarloaf Mountain, MD to see our friend David at his bountiful farm and market on Comus Road. What a lovely excursion except that the kids had a loud case of the "gimmes":

I want that 60 lb. pumpkin
I'm hungry, let's get cider
can we?
could we?
when? . . .

Why? I steamed silently. Why must we bring all of the city's materialism with us wherever we go? Don't they get that farms are sacred? Haven't I been pushing that hard enough?

And that's when I had to lighten up. Farms are not sacred to children. They are seen (at least by my children) as liberating spaces, with room for all to be him/herself. The sensory triggers kids encounter on the farm are expressed transparently; the fear, the joy, the boredom.

Gross: There's mud everywhere.

You guys think farms are so great. (eyes rolling)
Watch out for those bees!
I want that $60 pumpkin.
You have too many rules, mom.

We did our browsing, helped David unload a few fresh pumpkins from his tractor, then headed along the country roads to the next stop. That's when I heard my son say, "I want a farm someday." Comforting words, I thought. Then a twinkle rose up to my eye.

***

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14 takeaways from Gel Health 2009

Gel Health, the 1-day conference on Patient Experience, was held in New York City this week. Since this was my first Gel Conference I wasn't sure what to expect. But by mid-morning break I too had joined the tribe of Gel devotees.

I wish I could share the complete experience with you, but it would be impossible to capture the attention of the audience, the sound of laughter (and tears) in the theater, the thrill we felt listening to the steady drumbeat of what's right in health care (in a time when all we hear is what is so wrong). So, while I took pages of notes, the 14 takeaways below are not quotes as much as they are my paraphrasing of speakers' thoughts that made an impact on me:

1. We need food, housing, [health care], jobs…yes. But we also need roses. Cathy Salit, CEO Performance of a Lifetime
2. The [health care] system is designed to deliver technology . . . it is designed for the doctor, surgeon, health care worker, but not the patient. Bridget Duffy Former Chief Experience Officer, Cleveland Clinic
3. It was risky . . . but I went forward. [I learned that] when you’ve played together, you work differently together. Sharon Krumm, Director of Nursing, Johns Hopkins Kimmel Cancer Center
4. Cooking is a disruptive technology in Health Care . . . [And a related thought:] Is it medical error to offer sodas and high sodium foods in a hospital setting? John LaPluma, ChefMD
5. We need courageous, “True North” style leaders in the C-Suite of every hospital out there. We also need Patient Advisory Councils. Dan Ford, Patient Advocate
6. 2/3 of medical errors are not disclosed. And yet, “To err is human, to forgive divine. “ [Patients and providers] must move toward forgiveness. Sigall Bell, MD, Beth Israel Deaconess Hospital
7. The focus is on living [not on dying]. Living is what will get you through. Mark Pochapin, Jay Monahan Center for Gastrointestinal Health
8. Dancing is one of the most pleasurable experiences... I wanted to do something different. I did not want to contribute to a person self-identifying with their disease. Olie Westheimer, Founder, Dance for PD, with Mark Morris
9. Good experience isn’t just about storytelling; it's about performance. Mark Hurst, Founder Gel Conferences
10. Patient experience must take into account a person’s environment . . . where they come from, their level of health literacy. You don’t know what you don’t know. Javette Orgain, MD, Family Physician, Chairperson, Illinois State Board of Health
11. Once when one of our clowns was juggling in the ICU, a doctor said, “Clowns don’t belong in the ICU.” To which I replied, “Neither do children.” Michael Christensen, Founder of The Big Apple Circus and Clown Care
12. This was not something I figured out in an Excel spreadsheet . . . We hire people because they are talented AND because they are willing to be vulnerable. Michael Christensen, Founder of The Big Apple Circus and Clown Care
13. The more I looked into the eyes of the homeless, the more I saw myself . . . People have layers and layers that need to be peeled back. [The way we practice conventional medicine] is not reality based; it suits a billing structure, or a hospital setting . . . but it doesn’t fit us. Jim Withers, MD, Founder Operation Safety Net
14. The patient has been saved . . . and now what do you do? . . . We were becoming therapists. Then our son said, “I want you as my Dad not as my therapist.” Ken Trush, Co-Founder of Daniel’s Music

I look forward to staying connected with new friends and to attending Gel Health again next year. Won't you join us? Sign up here for Gel Health 2010.

...

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No despair allowed: Climate change for kids

Today is Blog Action Day for Climate Change. I thought I'd post a few few ideas from a parent's perspective:

We parents are in a tough spot when it comes to telling our kids the story of climate change. Should we tell the whole truth? A partial truth? Should we be abstract or specific with our language? Finally, how outwardly obsessed and directive should we be over climate change at home?

There are many excellent approaches out there. We need them all. Yet, the approach I favor goes like this:

Keep my sense of humor engaged and invite an open, ongoing dialog with the kids. Since I am in the midst of making changes myself, the light touch helps me deal with inconsistencies. Above all, I try to keep an upbeat tone. I believe a "We can do it" tone will build the most eco-intelligence for the next generation. So, there is no despair allowed when you talk to your kids about climate change. Here are a few ideas to help you put it into practice:

• Weave climate change and shifting habitats into the discussion of many topics you visit: Places you love, oceans of the world, stars, food, farms, animals, the environment, money, style.
• Remind yourself that change starts at home, then show the kids "out loud" examples where you don't recycle correctly, where your choices were less than perfect. Often, they catch my "Duhs!" and give me a good ribbing. "Mom, you should do this, not that." I let them teach me.
• Look at cars in the neighborhood. Who is driving a big rig that eats up gasoline? Who has a cool compact car? "What kind of car would you like to drive?" I'll ask. Yeah, we get sidetracked looking at all the brands, but generally, kids get that a big car is no longer a sign of a person's affluence or success. In fact, it is often a sign of a person's unconsciousness.
• Look at food packaging. There is now an entire aisle in my supermarket devoted to snack size this and snack size that. It appears that portion control was the driving factor in that product design. So, portion control brought an abundance of packaging to deal with. Is that a step forward? Why not eat an apple instead of those "whistling cheeze dots?"
  
• Finally, tell a story that creates a backdrop for the fear and the anxiety you have for the planet. I love to tell stories about changing habitats. I bring the dilemma of scarcity into the hearts and minds of animals my kids love to conjure: the polar bears, exotic birds, penguins, etc. Stories tell us where we've been, where we are now, and where we'd like to go.

Have a go at it. Keep it real and let it evolve into a bigger conversation as the kids mature. We'll need their help designing lives that contribute to environmental health. Why not get them started early?

***

Related:

• Best bonding activity for families
• Coco's weekly meal plan: Kid tested
• ECO-canciousness, even at your house

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Visible invisibility on Twitter

French filmmaker Jean Renoir is credited as saying something like, "If you want to portray a man suffering loneliness, shoot a scene of him in a crowd." . . .

Recalling this quote made me think about Twitter and how using it can make a person feel very lonely at times. See, one never can be or have "enough" on Twitter, right? It's endless. And endless things are ... well, lonely.

She has more followers.
He is more clever.
That one is attractive.
His job sounds like a dream.
Those guys RT each other constantly.
She's vague.
He never RTs anyone.
Yay! She noticed what I said.
Why are they asking me to RT?
I would like to Tweet this, but I shouldn't
Everyone is Here or There but me
This is all bull
And more like that . . .

Anyone who has spent time on Twitter can relate to feeling a bit emptied out at times.

Visible Invisible
Contributing to that emptiness is the growing number of "visible invisible" tweets that don't add a thing to the conversation. They aren't quite spam, but come very close. They don't make you laugh, but neither do these Tweets touch your heart. The Twitters that I feel play the "visible invisible" game actually evoke in me the image of a noisy toddler coming into my house. The toddler who pulls out all the toys and settles into playing with none of them. It's an energy drain having a "visible invisible" type around... sucking the wind out of the room.

Build a feed that makes room for change
Tastes, opinions, desires, and opportunities change. There is a lot of room for fresh ideas and honest inquiry in the world. Building a stream that shows your personality is good practice. You will spot your weaknesses, celebrate your strengths. Your feed will be alive.

So, take a look. Does your feed allow you room to evolve your ideas? Or does that visible invisibility you pass on as expertise ultimately hold you back? Think about it.

Put yourself, not some idea of who you are supposed to be, into your tweets. You may build your character as much as your follower list.

. . .

Other posts
And never stop dancing . . .
Cancer isn't fair
Friend me, follow me. Humble me.

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Cosmos or chaos: Which way to health reform?

Note: This post conveys a few nascent thoughts about health care that stay clear of politics. It is nonlinear ... and long.

The point of the post is to open up a view to the extraordinary power of the present moment; how we are inventing a new health paradigm. Ideas mustn't be limited to accepted standards such as "efficiency," etc. Although those standards are important, beauty is too.

Healing messages can be simple
We rely and organize the experience of illness - as well as the experience of health - around cultural archetypes. This process of cultural meaning typically transmits without our conscious awareness. Here is a nano-example:

If we suffer a cut to the skin that is deep and threatening, most of us will call 911 and/or drive immediately to the ER. We do not contemplate the symbols or assumptions embedded in the ER experience as we take action to stop the bleeding. In this case, the moment of healing is black and white: "Get to the ER, stop the bleeding ... or perish."

Healing messages can also be complex
Yet, in many other (perhaps most) cases, and especially in the area of health promotion and prevention, the complexity of healing messages really heats up. Grey matter abounds. Being healthy looks more like fluid movement toward certain forces rather than arresting the flow of other forces. Herein lies the sweet spot of health reform, the place where we have lots of potential to influence up (by generation) if we can figure out where to put the investment.

The sweet spot of health reform
Working our way into the sweet spot *is* rocket science as a colleague on Twitter wrote recently. (Please help me id this tweet.)

As it stands now, not only is an appointment for a well visit supposed to include tailored:

• temporal reinforcements (i.e., "I'll be in touch with the results;");
• an awareness of gender and religious preferences;
• succinct and passionate delivery of avoidance marketing messages ("Limit/avoid tobacco use"; "Avoid eating too much fat.");

we'd also like a moment of respite, a bit of energy transcending the doctor-patient relationship to makes us feel good. Not so easy for a health care worker or physician to convey all of this rich stuff in a 15 minute visit.

It's no wonder every one's first best guess is to believe technology can help. But perhaps we could get to the changes more organically by growing the country's social awareness of health as a finite resource. It is ours to lose.

A conceptual dialog
As the national conversation around trade-offs in health reform progresses, I wonder why a rare opportunity to reflect on "what makes us feel good/bad about our health" (long wait lines @ doctors' offices, no advance calls to drug stores, no guarantees for good health, difficulty with communicating on all levels, feeling alone, or powerless to deal with bad habits and expenses, and an overall sense that one needs to pay to play the health game) is being passed by. ...

Could it be that this omission is due to the difficulty of working with conceptual ideas on a national scale?

Or, alternatively, could it be that skirting conversations about negative work flow is a strategy to deal with information fallout - a feeling that we simply have too much data (and too many of those "black and white" needs) to synthesize, so, "Enough already!"

Then again, could it be plain old-fashioned profit and politics? Is it possible that politicians (and many Americans) disdain conceptual thinking because it exacerbates feelings of uncertainty while at the same time exposing alliances and preferences that most of us would rather leave alone.

Cosmos or chaos: Which way to true health reform?
Health reform is much more than performance art and politics. It is much more than retrofitting a highway design from the 50s and equipping it with EZ-Pass technology. Health reform is about the development of America's identity, as well as America's marketplaces. And that's why we need to have a strategy, a "cosmos" to help us move most efficiently.

That's right, we must create and engineer a "cosmos" for health care, not a chaos.

A cosmos for health care is a higher concept with a clear, energized vibration. It conveys the extraordinary responsibility we share in the creation of revised archetypes of care. It acknowledges what is wrong, where we need to learn. AND it illuminates the beauty of the ideas proposed, not just hammers away at the bean count level.

We are *gets tingles* literally inventing, and reinventing, powerful partnerships with the human genome, smart technology, data streams, and ever evolving human beings. If we do it well - we'll disrupt current health infrastructure for the foreseeable future. Of course we should expect chaos.

But we cannot stop at chaos. To stop at chaos is to miss this opportunity entirely. Like an artist who shows his angst without the beauty that grows out of it, we must be led to the cosmos of the next generation of care and opt in. That is the way to leverage the chaos of disruption.

A bias for beauty
We don't often think that health reform can be beautiful. In fact, we are heavily committed to a belief in anxiety and constrictive energy around choices, winning and losing. However, our process seems false. It seems to be one that hurries along, that forces quick steps to mimic progress on a path unnamed. The motions are jerky, motivated by a fear that the country's needs may (will soon) catch up and overwhelm the medical pacts we made long ago.

As the system asks us to follow a more orderly, simpler path along the journey what will be our response? Cosmos or chaos? An unrelenting, steep uphill with no respite, no shady overlooks, and, certainly, little inspiration?

Change is awkward
If we identify the changes so many of us yearn for, and create a way to talk about those changes on a conceptual level first, wouldn't we be better equipped to create cosmos (and requisite policies) that are truly transformational, affordable and life-affirming?
...
Related posts:
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Health reform: For amateurs too?

We played "Kid's Topics" in the car on our way home from a long trip a few days ago. One of the cards queried, "What makes you feel better when you are sick?"

My son, age 8, blurted, "Sipping Coke sometimes helps!" My daughter said, "Getting hugs from my mom." They both agreed that "Resting on the couch with the TV on," also felt good when they felt bad.

So simple. These remedies are the things we have taught them to feel good about doing when they are home from school with an infection of some kind. "Take a sip of this warm Coke." "Rest here on the couch and I'll put on Animal Planet." Etc., etc.

Right or wrong from an evidence-based perspective, as parents we build and transmit our nations health culture. Period.

In the conscious minds of most of laypeople, what most of us identify as healing is not what experts purport, but what we are taught to believe in, right or wrong. Sometimes there is overlap, but not always. The disparities are cultural issues - not just educational/economic gaps - and, unfortunately, seem to have little to do with health care and health care rationing as it is being discussed today in the Federal arena.

Amateurs need a say in the health care debate in order to make this work.

In a wonderful piece, "The Avenging Amateur," a Time Magazine editorial by Kurt Andersen, historian Daniel Boorstin is quoted as saying, "The greatest obstacle to discovery is not ignorance, but the illusion of knowledge."

How true the existence of the "Illusion of Knowledge" has turned out to be in recent health care reform debates, even those on supposed "Social" channels, such as Twitter.

Unfortunately, without reforms that acknowledge and revise cultural expectations and underpinnings, we will have a hard time realizing health reform in this county. We may reform an aspect of the system -- the work flow, the billing -- but we will miss a tremendous opportunity for real reform if we do not develop a way to work on the cultural level.

When I contemplate what Obama's health care reform program (i.e., the money he's put on the table) might mean, I get the chills. To an amateur, it is simply a mind-blowing opportunity to engineer not just new work flows, but new meanings too.

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Electricity

Wow. What was that? I didn't know whether to run out of the room or find a way to harness the power of the incredible human being standing before me -

- when I was 19.

Now that I'm in my 40s I simply relish those occasional electrical super-charged moments. Aren't they a lot of fun?

I can let go and enjoy without attaching, without coveting, without fearing the nefarious side of myself or the other.

Today I had a meeting with the CEO of a green building company. He is an extremely talented guy, poised to go far. Our discussion was supercharged. (I am still sorting ions.) What did we discuss? Oh, family, success, exceeding expectations, fear, anxiety, changing the world, making money, getting stuff done, collaborating, finding our stories. We were juiced.

On a completely unrelated topic here is a supercharged link you've got to watch. It shows Jens McCabe as she opens up the results of her genetic testing with 23andMe. She's electric. Could you handle that kind of charge?

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