Healthcare researchers have known for some time that there are large regional variations in the cost of medical care. The well-respected and long-running Dartmouth Atlas of Health Care project has documented this for years. A recent widely read article by Atul Gawande in the The New Yorker highlighted some particularly astounding examples of how the same healthcare can cost much more in one place than in another, even if the demographics of those two places are virtually the same.

Most analysts think there are huge amounts of money to be saved by trimming back the expensive places. Not surprisingly, some of these places have pushed back, asserting that their costs are higher because their patients are sicker. After all, one person’s excess cost is another person’s revenue stream. In claiming this, however, they ignore the fact that the Dartmouth research has been corrected for case mix to eliminate that possibility as an explanation for the cost differences. A recent editorial in the New England Journal of Medicine labels this defense “the reverse Lake Wobegon effect,” after the fictional town devised by humorist Garrison Keillor, a place where “all of the children are above average.”

Anybody who looks at the data recognizes that it is a lame defense — in these expensive places the care is just more expensive, not better. Sometimes the more expensive care is even worse care.

I last wrote about technology-dependent children two years ago. The term is a broad one, but it describes those children who rely on some piece of technology, such as a mechanical ventilator, to live. They are fragile and challenging children to care for for physicians, but much, much more so for their families.

I’ve been looking for information to tell me more about how many such children there are in America, but haven’t found any nation-wide information beyond what I described last time. What I have found are some interesting and compelling descriptions of what it is like to be a parent with such a child.

This interview from last spring describes a study in which 103 mothers of technology-dependent children were interviewed and screened for indicators of psychological distress. The author found that about 25% of mothers were at risk for depression, although the study didn’t specify how many of these mothers actually were clinically depressed. It also didn’t give any important background control information; in particular, it didn’t say what the expected rates of these things would be among mothers with normal children. The author did offer some commonsensical advice about how healthcare providers can help families prevent this. Interestingly, the findings did not correlate with the particular kind of technology the child needed.

In my own experience, mothers (and families) of technology-dependent children are quite resilient psychologically, although I’ve not done a formal survey. Recently I ran across this blog by a mother of such a child. Her can-do attitude seems more along the lines of mothers I’ve met in this situation. She’s got an excellent summary of what life is like, and what she expects, in what she calls a “Bill of Rights for Special Needs Parents.” Here it is — it makes sane and inspiring reading:

We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Healthcare wrangling is all around us. Some of the arguing makes sense, much of it doesn’t. What is clear that, if we do nothing, costs are unsustainable even in the medium term, never mind the long term. You can argue about how to cover the uninsured and improve access, but there’s no argument that we’ve simply got to do something to control costs. Most healthcare wonks agree that the principal engine driving costs is how we reimburse doctors and hospitals — if I do more, I get paid more. It makes no difference if what I did was useful to the patient or not.

Insurance companies have gone at this problem with a blunt axe by simply denying payment for things they don’t want to pay for. This makes some sense at the margins — for the big, expensive procedures that invite close scrutiny — but the companies pay for all manner of lesser tests and procedures which, cumulatively, are far more expensive. An additional problem is that the insurance company’s decision about what to pay for and what to deny often appears to be either random or made by somebody who doesn’t know enough to make the proper decision.

A couple of decades ago, health maintenance organizations (HMOs) were supposed to correct a big part of this problem. They paid a fixed amount to the doctor for taking care of the patient for a defined period of time. From the doctor’s perspective it was a little like a lottery: if the patient developed expensive medical needs, the doctor (or hospital) lost money; if the patient stayed well, the doctor made money. It’s pretty easy to see one of the evil consequences that can come from that arrangement — the doctor has a financial incentive to deny care, even needed care.

A couple of interesting recent editorials in the New England Journal of Medicine (here and here) discuss ways of tweaking the idea of global payment for care, rather than the old episode-based fee-for-service. The idea is to reward doctors for making decisions based upon evidence-based medicine and for keeping patients out of the hospital. Both of the proposals essentially abolish fee-for-service. As a practical matter, I think that’s where the future lies.

Much of this site is about parent/doctor communication. Along those lines, I’m going to be putting up posts from thoughtful parents, people who experience from the other side of the examining table what we doctors do to their children. The first of these is by Jamie Mason — blogger, poet, and novelist. Her excellent website and blog is here, and she is one of the writers for AuthorScoop, a great site for anybody interested in what is going on in today’s writing world. Here is what Jamie has to say.

A Few Words on Common Ground

Head lice and stitches
And all night puke sessions
Vaccines complete
To make good first impressions
Check-ups that ward off the late night phone rings…
These are a few of my favorite things

If you have your health, you have everything. If you have healthy children, you have everything with an extra portion of peace of mind. But even then, there’s the gamut of inevitable illnesses, injuries, and routine office visits that are the pediatric spokes on the healthcare wheel.

And how I tremble just now, having to type the word ‘healthcare’. At best, it’s been rendered impolite party conversation. At worst, the topic is a hostile standoff of outrage and muscular opinion. In these wordy, distanced debates on policy and theory, the players – especially the white-coated ones and the insurance henchmen in their sidecar – end up on the far side of us versus them and, oh yeah, them too.

I’d like, though, to offer into evidence that in practice, there are bridges festooned with olive branches over the evil gorge. My favorite is the nurse-advisor call lines. Between my two children, no fewer than half a dozen (and maybe more) office visits have been prevented by the patient assurance and know-how of the registered nurse on the line with me.

There have been calls on Saturday nights, when we were stranded in between islands of office hours, and thorough histories taken to bolster the decision to take a Motrin and wait it out. The doctor’s office makes no money on this service. Neither does the insurance company. But good will is also coin, and perhaps one of the most valuable currencies we’re floating in this time of economic turmoil.

So stand your ground. Get the care you need for your children. But don’t forget to appreciate the spaces where all our objectives overlap.

My friend Jim Jaffe has written a thoughtful piece about why the principal problem with increased costs is that something on the order of a third of what we doctors do either doesn’t work or may even be harmful. This second issue is an important point — useless tests often lead to other useless tests, and the whole process can turn into an Alice in Wonderland-like experience that takes us down a fiscal rabbit hole. Jim also thinks the loud politics have deceived us about where the true debate lies:

“The debate seems more partisan than it actually is. In reality there’s a split within each party on the over-consumption issue. Experts within the Republican Party think that backing away from employer-provided coverage would force individuals to make more prudent economic decisions that would reduce over-consumption.

Among Democrats, few believe that market forces can do the job in this area where supply basically creates its own demand.”

You can read Jim’s article here.