vol. 1 issue 49

Greetings,

While I have been writing docu-mental all this year, many bigger plans I have had for it keep getting postponed because of health issues. I don’t like to whine about them, so I generally keep them out of my reportage on things, but something as seemingly straightforward as being told I have an autoimmune disease, one that when treated properly has a high rate of remission, has actually served to be like a scud missile in my life: I never know precisely how its import will be felt, but when it lands on me, everything I thought was in place is suddenly blown to bits. Meanwhile, as my health crisis continues, the healthcare system, I have found, wants me to keep doing the same thing over and over, despite the results being the same poor ones every time, and despite there being emerging evidence that the old ways of treating it don’t work but new ones do.

Which is why I have Occam’s Razor on my mind.

Einstein apparently said that doing the same thing twice and expecting different results was the definition of insanity. For the friar-philosopher William of Ockham, who preceded Einstein by about 600 years, such a sentiment meant that when solving a problem, rather than be “insane”, one’s hypothesis should always be a) the simplest and b) include the least number of assumptions.

In other words, if the old approach doesn’t work, try something new.

That’s the razor part: Instead of doing what doesn’t work because that’s what you’ve been conditioned or trained to do, use the razor to “shave” off the fluff.

Aside from the obvious outcome of the problem at hand not getting solved, healthcare personnel who constantly try the same nonproductive thing contributes to my levels of anxiety, sadness, and other emotional states like fear I’ll never get better, and frustration that burns into being outraged that I seem to be shouting into the wind. I don’t like being blamed for something I didn’t do, and with this illness, as I continue not to get better, the implication is that I am failing to heal, that I am failing to do the right things, not that treatment is failing to make me better.

Now, consider that what I am going through happens in one form or another all the time in our health system. It can be for a variety of reasons, and I will not say that it is because doctors don’t care. I think my doctors do care. But who has time to try something new these days when you’re given 15 minutes per patient? In the end, we’re all feeling helpless, and possibly even hopeless about my situation.

I don’t want to bore people with tales of my health woes, but I think there is a bigger lesson here. And that is, you can’t check out. You can’t outsource your life to people who have artificial boundaries placed on their ability to serve you.

In the case of healthcare, not always, but too often, the person you’re consulting can’t really do much for you because they are not empowered to go beyond the allotted time, or because they won’t get “paid” for that service. Or, because their training is limited to a specific way of seeing things that might not be comprehensive enough for what you’re going through.

If it sounds like I am reverse blaming the physicians, I am not. I know from years of reporting on clinical policy and practice, they largely hate this system we’re in, too. What I am saying is that because so many of us have checked out, we’re focusing on the wrong thing when we debate whether to enact Medicare-for-all, or provide some “new” form of the status quo.

Healthcare reform, blah blah blah. Do you really care? Are you really actually listening to what the current crop of presidential candidates are saying? I wager that unless you are a policy geek or in the industry and stand to lose or gain, the answer is no. That’s not because the subject itself isn’t important, but because experience tells you nothing will actually change for the better, no matter what happens.

Here’s the real bottom line on the debate: whether we should be providing the same mediocre care for all, or continue offering our current mediocre care for a fee, however re-packaged it might be.

A better question is, What is the best kind of care for each of us as individuals and how would each of us pay for it? In other words, if you could design your own healthcare plan, what would it look like? And if you had all the cash and freedom to build it, how would you go about it? Who would you hire to be in your plan, a plan that you and a community of people like you, create? Might the plan use its income to pay for the training of the healthcare personnel you want to be in it?

Current and aspiring physicians would not be averse to this line of thinking. Many physicians would gladly swap the chance to practice medicine as a calling instead of just a way to pay back their ridiculously high college loans. Debt alone is a driving force as to why we have a shortage of primary care physicians; many would-be community docs choose higher-paying specialty care instead because they just don’t want to be in debt for the rest of their lives.

This might just be me riffing, but not idly. It’s not a fever dream to suggest that in a true democracy if what I really want – what you really want – mattered to legislators, we’d get better care we can afford and that meets our individual needs.

To wit, the Affordable Care Act, aka Obamacare or the ACA, had many successes. People who’d never had care before suddenly could get basic, preventative care, and it was making them healthier! Plenty of data confirmed the effectiveness at many levels of the ACA.

But ultimately, cost was an issue. To meet coverage mandates, health insurers had to jack up their premiums to stay pleasing to shareholders. I was one of the many who were more than annoyed that even though the ACA was in theory and to some extent, in practice, a good thing, it was suddenly costing me a crap ton more to purchase health insurance as a result, and yet the cost didn’t yield me any better results.

That’s because no one in charge asked me or you what we really wanted. Legislators and policymakers gave us false choices, and we let them. They talked and continue to talk about letting us “choose our providers”, but when they say “choose” they mean choose between which for-profit insurance company we allow to have the decision- making power over which physicians and hospitals we can visit.

What they DON’T ask first is who would we like to see as our care team and then ask those physicians and other clinicians how much would it actually cost to see them, and build the system from there. Of course not! That would empower individuals and individual practitioners who currently are bound by a lot of regulation that is bidirectional between government and big business. Healthcare is nearly 20% of our GDP! If they gave us individuals power over it, we’d see a very scary economic shift.

In other words, the already powerful would lose power.

Wherever there is money, there is politics. Which is to say, politics are running your healthcare costs, but not meeting your healthcare needs.

What happened once supporters of Obamacare were voted out? The ACA was dismantled almost immediately. So, now a bunch of people who finally had care don’t have it any longer, and people like me who did have care are still not getting the care we want, but paying for it anyway.

In my case, I pay monthly premiums, still have a high deductible and yet on top of that, I still have to see several out-of-network physicians and practitioners to access treatments that are evidence-based but for whatever reason aren’t covered. That’s due to a number of reasons, but a key one is that my specialists have opted out of insurance because they see no upside to having their clinical judgement overruled by bean counters at insurance companies.

In other words, I pay for insurance to meet the system’s needs, and then I pay more for what I actually need.

Why do we Americans have to do these kinds of stupid gymnastics with our health and money?

Because government and for-profit healthcare companies are the ones to whom we have outsourced the decision-making. It is deceptive to say there is freedom and democracy when the choices we start with aren’t really choices at all.

Maybe what we need is to start over.

Let me lob this thought into your weekend holiday plans: maybe we need smaller everything. Maybe Texas and California and Key West and South Carolina and South Jersey should all secede. Or – maybe states’ rights should be greatly restored and the federal government should be left to worry about defense and education only.

Maybe we need smaller forms of government, smaller communities that we build from the ground up, in forms that make the most sense to our concerns and local needs. Then the ones who are closest to the outcomes will be the ones who have the most say in shaping how they will be achieved.

Now that I have your attention, at least consider that progressives and liberals are absolutely correct that good healthcare is a fundamental right, and that government should ensure access to it. They are also correct to say that despite many private health insurance and other related companies’ community-based efforts to improve healthcare outcomes, these are always profit-driven, no matter how much marketing is done to make it seem otherwise.

Meanwhile, conservatives and others sympathetic to them are correct that too much interference from big government makes caring for our communities difficult to do, including making it too expensive.

But don’t be fooled by any sleight of hand that government should be minimized and private industry maximized: too big corporations are no different than too big government – that is, they are both too big to care, not too big to fail. I am not the first to say it.

Let’s apply Occam’s Razor to this debate and pare away all the fluff and lint that has accumulated on our democracy. I don’t have the answers for what form our healthcare should take, only the notion that we’ve not come up with enough ideas that can be shaped into those forms. All I can say for sure is that we cannot assume in our healthcare debates we’ve actually exercised what democracy promises is possible.

For what I am suggesting to work, however, we’d need to pay more attention. We’d need to call out legislators and wannabe power leaders for their false choices and then tell them what we want and insist on getting it.

Doing so would mean we would have to actually participate in our democracy. Stop checking out. Stop swallowing the false choices as fate. Do some research. Maybe even dream about what really good healthcare would look like. I don’t know what to tell you — it’s your dream for goodness’ sake.

Ugh. All this work. Sounds exhausting, I know. But so is being sick at the same time you’re working for cash to pay for healthcare that doesn’t meet your actual needs. I, and a hella-bunch of others, can tell you all about that.

So, here’s my definition of Occam’s Razor:

Ask more questions and demand better answers.

You’ll probably get closer to what you want being what you get, even if it means you won’t be able in good faith to blame everyone else for your world not being what you want.

Happy and Healthy,

Whitney