Thank you, Harvard Pilgrim!

The rant below is about statistics, not insurance companies. But I want to take a moment to thank my health insurance company, Harvard Pilgrim Health Care. My cancer adventure (and house-selling adventure) this year had enough challenges of their own, but the year could have been sheer hell if my insurance company had been a jerk. Harvard Pilgrim was the polar opposite of that.

This year I’ve run up almost a half million in costs, including dozens of doses of Interleukin-2 at $7,000 a dose. As I chronicled in my journal, the Interleukin (and skillful hospital staff) saved my life, and I don't think I paid a penny for it, and only paid about a grand for everything else.

Early in March HPHC assigned a cancer coordinator to me. At first I was worried that she was a snoop, trying to find out if I was going to break their bank so they should ditch me. But she turned out to be a genuine supportive friend, helping me find information when I needed it, and truly making sure I was getting what I needed.

It's easy for me to see what they've again been ranked the #1 health insurance plan in America. Such rankings aren't perfect (don't get me started) but this one happens to reflect my experience perfectly.

In my first post here, I mentioned my admiration for a CEO who can accomplish great results for people while also managing for good business results. So many people think business is a zero-sum game, where if the company wins, somebody somewhere loses. Great organizations prove it doesn't have to be that way, and great managers (at all levels) make it happen. Blessings on them.

Don't let anyone tell you it can't be done. Thanks to all of HPHC, including both the management team and all the individual workers (like my Helen) who prove it can be done. They made an immense difference in my cancer.

For prettier statistics, omit inconvenient people.

Occasionally I’ll use this bully pulpit for a rant. The two top rantables on my agenda right now are statistics and silos. This time it’s statistics.

I’m irked because I keep seeing a mistake that blows the kneecaps off any well-intentioned effort to improve policy by looking at statistics. People need to be aware of it, spot it, and cry “BS!” when it rears its head.

Earlier this week, in Paul Levy’s blog I got into a discussion in the comments section of a post. Frequent and knowledgeable contributor Barry Carol had wondered if high health care spending around here might be caused in part by a large supply of hospital beds and specialists locally. I said, in part:

I'm intrigued with Barry's observation. (I don’t have an opinion – I don’t know the data he cites; I’m just intrigued.) Is it accurate to say the *cause* is too many beds? Or is it that more are available, so it's possible to give someone the care they need? [I then recounted a story of my father’s care in his final decade, where the hospital staff only seemed to become competent when it was time to kick him out.]

If motorists were spending lots of money on fixing flats, would we say the problem is that we have so many tire repair shops? It's not a perfect analogy, but it's worth looking at. Some cultures think women are the cause of rape, because if there weren't all those women, there wouldn't be all those rapes.

I feel strongly that any statistics about costs and outcomes in a system should have an accountant's note specifying what proportion of the population goes without coverage in that system, so they don’t even have an outcome. Until we get honest about that, all we're doing is chasing a bubble under the blanket.

There’s the rub, the itchy spot. In cases like this, the goal of statistical analysis is to better understand things, particularly to know what a batch of data does or doesn’t represent so we can predict the best way to approach future situations.

And if we don't know what those statistics left out, we don't know what we'd be getting ourselves into by relying on them. We cannot rely on findings until we know what cases were and weren't included.

Increasingly, what might be getting omitted is you. Or someone you love.

As the boomers age, and their decades of productivity and home buying convert to decades of home selling and health costs (who, me?), this is gonna be a big skull-knocking issue. There will be claims about which system works better, with all kinds of statistics being flung around like monkey dung. (Sorry, but monkeys do fling dung when they’re fighting, and when policymakers start fighting, they fling statistics, claiming they're proving reality.)

For health policy, all kinds of claims can be made with good statistical support – but you damn well better ask who got left out, making the picture prettier, whether it was intentional or not.

Personal story: in Massachusetts insurers must price all group policies the same, without considering who’s in the group; New Hampshire has no such law. My wife and I started 2007 with insurance at her job in NH. Without warning, in June her (small) employer’s group rate went up 60%. Why? Because she had turned 60. Young people generally incur lower health costs, so in most states a company can choose to be competitive by selectively offering lower rates to more attractive groups. But when she turned 60, the entire company’s rates went up 60%.

I work in Mass., and it turns out we could get equivalent coverage from my employer (from the same insurer! See my next post) for 40% less.

Now here’s the killer: in NH the disenfranchised can find themselves in real trouble, as policies evolve and unattractive individuals are increasingly isolated. Next personal story: I know a healthy, athletic 20-something whose coverage was costing $2,300 per year (for one person) because she has a minor murmur that’s never caused a symptom, but she wasn’t in a big group. Now she works for a big company, so she’s swallowed up into a big group and gets group rates.

What is the justification for this???

I also know two young families who simply go without coverage because there’s no room for it in their budget. Statistically they are of course counted in the 46 million uninsured – but I say they should also be factored somehow into the total cost of health care, including what it WOULD cost to provide the care they don’t get but would if they could. (Which brings us back to Barry's point about how many hospital beds we have.)

Worse, while excluding those cases, you can bet that the insurance companies (all of them) talked about how good their rates are, and they mean it. (I would - I'm in marketing, and when I believe my company is doing a super job, you bet I say so.) But again, I say you can’t talk about costs and outcomes without specifying whom you’ve excluded.

Final first-hand story: some years ago, when self-employed in NH, I myself found that I couldn’t afford health insurance, because at the time things had evolved to where almost all the AIDS patients in the state were in the category “not a member of any group” – same as me. So any statistics about insurance prices in that state at that time would have been a fat load of crap – flingable crap.

Overlooking the inconvenient people isn’t limited to health care costs. Consider the following, from the US Dept of Labor’s Bureau of Labor Statistics (BLS):

• Unemployment statistics don’t include everyone who wants a job but can’t find one. Once your unemployment benefits run out, they simply stop counting you. You don’t even exist as a problem anymore, as far as the BLS is concerned. I cannot figure out a legitimate reason for this.
  
  
• There are no statistics for people who eventually gave up on their previous career and are now working for half their previous pay. People in that situation are, again, simply not counted as a concern.
  
  
• Nor are there statistics for the loss of benefits. Employers certainly pay less for no-benefit or feeble-benefit jobs, but if you or I change to a job with no benefits, it doesn’t even make a dent in the pretty statistics.
  
  
• Worst of all, the “jobs created” statistics are a cruel joke. When a full-time job with benefits is carved up into three part-time jobs with no benefits, the BLS counts it as job growth. (I called my Senator’s office and had them check it out; a senior BLS statistician got back to me and confirmed it.)
  
  

This is insane. It's as if King Solomon chopped up 1,000 babies and declared a population explosion.

What is wrong with these people?? In May of 2006 an erudite observer in the New York Times remarked with surprise about the 200,000 “new jobs” that had been created in April: “employment [is] doing well, yet core inflation has remained remarkably subdued." Remarkable indeed, until you know what they're calling “job creation."

As I say, until we get honest about this, all we’re doing is chasing a bubble around under the blanket. With the best intentions, we'll make misguided policy decisions. And believe you me, policy has impact at the personal level. The time will come when you (or a loved one) is the bubble everyone wants to chase away. Do whatever you can to stop this crap. Now. Wake up! And wake others up.

What's it gonna take?

What's it gonna take to be so present that I reliably do what I said I was gonna do?

I say I'm going to practice singing, then I do something else. Three days later I say I'm going to pay my bills, then I do something else.

The point isn't that I'm being "bad" when this happens. It's not that I "should" pay my bills that day, or sing that day. The point is that I said I was going to, and I meant it - so what the heck happened?? It's as if I turned on my blinker, turned the steering wheel, and nothing happened.

Well, actually something happened - I went straight, maybe I hit something, and I certainly didn't go where I said I was going. In any case it wasn't what I said would happen, and not what I put effort into. Isn't that weird??

So what's it going to take to be fully alert, present, and "connected to my wheels" so I'm actually the one who says how my life is going?

The irony of this, of course, is that I've spent the past year SAYING how my life is going to go, and succeeding. Nothing could stop me, because everything was at stake. I was, quite literally, living as if my life depended on it.

This reminds me of something from the "est" training (precursor to Landmark): "A game is what you have when what's not so, is more important than what is so." A current example might be CalvinBall, where they make up rules on the fly - none of it is real, it's all an agreement about what's important. Of course, Calvin & Hobbes supposedly know it's all made up, because they change the rules whenever they want, and it goes the way they say.

And est continued: "When what is so becomes more important, the game is over." Like, Calvin & Hobbes are just there, standing at what used to be the goal line. Except now they're just present.

I'd say, when you know what you want but you're not getting there, it's a pretty sure sign that you're playing CalvinBall and you don't know it.

I want to get back to where I was when I was sick. Isn't that weird? But - and I'm not making this up - as I wrote this post, in the background there was an episode of the TV show "House," about a cranky doctor, and in it, a character was ticked off because his diagnosis of terminal cancer turned out to be false. "I've never been as present and alive as I was these past few months - and now you took that away from me." Yeah well, you and I know nobody took anything away from him - it's all in his mind. Mine too.

So the question is, what's it gonna take, to be that present all the time, so I actually do what I say? I know from recent experience that I get a lot of joy when it goes the way I said.

More on this in later posts.

Thank you, Dr. Drew Wagner!

Y'know, as I posted my thanks to the hospital the other day for the cancer care I received this year, I knew I was overlooking someone. I asked a couple of people who it could be, and they too didn't see anyone missing from the cancer team.

Then it hit me: oh yeah, I forgot the miracle surgeon who relieved me of that stinky kidney in the first place! Until he did his work, the oncology team couldn't start theirs. (See, their work was to get rid of all the metastases throughout my body. But that wouldn't have been too productive as long as the source of trouble was still there.)

Dr. Drew Wagner is the surgeon who did the deed for me. He does the really fancy stuff, laparoscopic kidney removal. Three little incisions to stick the instruments through, and a 2-3" bikini incision (yes, I have a bikini scar, and no you can't see it) through which they remove the culprit.

Now, here's the thing, and I really want you to get this: they inflate the belly to give themselves room, then they stick the tools in through the tiny incisions, and do the work by watching it on a TV. They remove the organ (which is large) by basically snipping it off, putting it in a Baggie, zipping it up, and sliding it out through the bikini cut.

Of course, they have to do this with surgical precision, in the dark except for the flashlight they stuck in there. And here's the thing: the TV is 2D, but your guts (including the location of blood vessels etc) are 3D. And p.s., you don't get to accidentally bump into anything with your knife.

In my case, it got a bit tougher than that. Here's how my sister wrote about it in my cancer journal (March 7, 1:29 a.m.):

The procedure took longer than expected for two reasons: 1) the adrenal gland was involved with the tumor and was also removed (as planned) making for two surgeries in one for all intents and purposes; and, 2) the tumor had attached to the wall of the bowel as well as the psoas muscle which embraces the side of the lumbar spine and had to be very carefully peeled away from both surfaces. Dr. Wagner was concerned that he might have to effectively start all over with a more commonly used incision but was remarkably able to perform the very intricate procedure laparoscopically.

"More commonly used incision" is a bit of an understatement. It's a very large incision, and they have to (permanently) remove a rib. It hurts like hell and takes 6-8 weeks to recover. Instead, I was out of the hospital in 2 days and off all pain meds in less than a week.

I had a unique opportunity to experience what laparoscopy is like. Beth Israel Deaconess has an amazing simulation and training center, where students can actually handle laparoscopic equipment. The very first training exercise involves holding two long-armed gripper tools, and all you have to do is use them to pick up some little white beans and put them in a cup. A foot away, and several inches higher.

That's plenty rough when you can see what you're doing. But when you're good at it, they put a drape over the plastic box that contains all this, and you lose all depth perception because now you're watching it on TV.

Then, don't get nervous or anything, but just remember that while you're trying to do this, the patient is bleeding (or might be) and every extra minute under anesthesia adds risk. So don't screw up. Oh, and pick up that bean you just dropped, because it rolled under the pancreas and it's really a piece of tumor. Or something.

And don't nick any blood vessels or other organs.

And then they tell you that this is the first of the laparoscopic training hurdles. You don't get to move to the next machine until you can move 50 beans from lower left to the cup in one minute, with no depth perception.

Until I tried this myself, it had never dawned on me that a surgeon has to be damned athletic as well as smart. And when I think of this guy going into my inflated belly through these little incisions and delicately peeling that super-aggressive tumor off the bowel, and off that muscle attached to my spine.... both of which the tumor was on the verge of invading... and then the adrenal gland got away, and had to be chased down ... well, the surgery took 5.5 hours,* almost had to convert to the rib-removing version, and yet I went home two days later.

Is this guy good, or what?

My gratitude: well, as that cancer journal excerpt said, when I finally got back to my room all I could say was "Mommy, they hurt me!", and I meant it. And when I (groggily) laid eyes on my cane, I (groggily) considered using it to whack the surgeon. But he moved faster than me, and took it out of my reach. (I am not making this up.) It seems somewhere along the line he developed quick reflexes and manual dexterity.

So thank you, Dr. Drew. You are an amazing guy, and I'm really glad your fingers work that well.

* See comment for update.

Thank you, Beth Israel Deaconess!

People have different views of what causes what in life, and that's fine with me. On this blog you'll hear lots of thoughts about that.

Here's one of my strongest opinions: I wouldn't be here writing this if it weren't for some extraordinarily good people at Beth Israel Deaconess Medical Center (BIDMC) in Boston.

It's not fair to include some names and not others, but since they have 6,000 employees, I've got to stop somewhere. Here are my heroes:

• Dr. David McDermott, of the famous Atkins & McDermott team - among the best in the world for RCC (renal cell carcinoma). You may be a Yankees fan, but I love ya anyway, Dr. McDreamy.
  
• Kendra Bradley, RN and a dozen other initials, from Dr. McDermott's "biologics therapy" team. Kendra is one of those extraordinary individuals who knows what people need before they say it. "I have to," she says. "I've worked a lot with little kids who have cancer, and they don't always have the words to say what they want." You go, KB. You've been fabulous in handling this overgrown kid.
• Mee-Young Lee and Virginia Seery, both nurse practitioners. One of the defining memories of my many days in the hospital this year is the sight of one or both of them standing at the foot of my bed, with their constant beaming smiles and confident voices. What they said wasn't always good news, but these women have mastered the art of conveying strength, encouragement and confidence. I love strong, confident women.
  
• Dr. Megan Anderson, the orthopedic surgeon who fixed my leg when the cancer led to its fracture (and again when my Frisky Pony act broke the screws she'd put in). She too works with kids (do we see a pattern here?) and won me over when, on our first visit, she reached for my foot and said "Let's check the pulse in your little feeties."
  
• The nurses of Stoneman 7, whose quiet competencies are the gold standard of care, in my book. My life was at stake as I received a dangerous treatment, and they did it all right.
  
• Dr. Danny Sands, my primary care physician, and co-manager of the creation of PatientSite, BIDMC's out-of-the-ordinary patient communication web site.

Finally, last in this list (which is where he'd want to be), Paul Levy, not MD nor NP nor RN nor medical nuttin' - he's just President & CEO of BIDMC, and he's the template for how I'd like every CEO in the world to operate. He is open, honest, feeling, compassionate, and tenaciously dedicated to doing good in the world - and competent, on top of all that. Competent enough to run a billion dollar enterprise, pulling it out of a tailspin five years ago so it's now flying high. Boy am I glad he did that.

Characteristically, Paul writes Running A Hospital, the first blog by a hospital CEO. You should read it - he's getting worldwide attention for his openness ("transparency") about the challenges of running a hospital, and for generally shaking up the conventional style of healthcare management. On that blog my "handle" is Patient Dave.

And so begins this blog: the New Life of Patient Dave. Let the games begin!