Post-apocalyptic life in American health care (opens in new tab)

I can second the experience of the author. All in I had contact with over 40 different providers. I was lucky in that I had to leave my job and could concentrate on the administrative work required full time. I eventually learned I needed to keep a detailed written narrative up to date with a tl;dr at the top. Eventually I added appendixes that summarized lab tests and surgery reports. This was the only way I could make sure each provider had the details they needed. I would always send it advance, most of the time the doctor hadn't read it so I brought paper copies and sat there while they did.

The billing and who covered what was hopeless. I had to fight with medical insurance, the medical disability company and Medicare when I maxed both of those out. I went through every bill line by line to identify mistakes, there were many. Then I would make sure each had received a copy of each bill and start figuring out who would cover what, sometimes line-by-line. This all had to be done over phone and fax.

It's broken and I am sure it's killing people. I also don't see a technology fix. Anything that requires more than two or three providers is an edge case, this space is 90% edge cases.

Create a new single payer healthcare system that is completely separate from anything existing now. Don't attempt to incorporate any existing insurance, regulations, medical records, etc. Allow the new system to ignore any existing drug patents. Get a few brand-new hospitals, a few hundred doctors fresh out of med school/residency, and tens of thousands of people using it - probably do this in a single city, a la Google Fiber. Spend a couple years working out the kinks.

Once that is done, migrate everyone to the new system over the course of a decade or so. Any existing hospitals, doctors, and patients are free to stick with the existing system, but I suspect they'll learn to regret that decision.

There are no technical or medical roadblocks to this that I can see. The only obstacles are political and legal, which can be overcome in one or two election cycles.

The best thing you can do, before your parent gets too old, is to consult with an elderlaw firm to get health care directives, wills and power of attorney written up. Most importantly, be sure to fully talk through the possible scenarios for what happens financially in the event of putting your parent in an SNF (skilled nursing facility).

Private pay for SNF in the USA is about $10000/month. That's a steep rate for middle class and even upper middle class folks. That's what your family will pay until medicaid "kicks in" when the savings of the parent are depleted. If your parent made the mistake of giving away part of their wealth to family within 5 years of entering SNF, that money still counts and they have to pay it to the SNF. The medicaid provider for your state will demand 5 years of bank statements for all accounts as well as query ALL financial transactions. You might have to hire a lawyer just to untangle the mess. Dealing with this stuff is a nightmare in paperwork at the worst possible time you can imagine.

I have found that face-to-face communication with the bureaucrats helps a lot. The HHS staff people who process medicaid long term care enrollments in SNF's have massive, soul-crushing workloads. Of course they're going to just skim the hundreds (not exaggerating) of pages of documents you send them. The article is right. You have to watch out for your family. No one else will do it.

Eldercare consultants cost several thousand dollars. We decided not to engage one because the SNF provided a lot of support and we had previously worked with an elderlaw firm, but it probably would have saved us some stress when dealing with medicaid/HHS as I was on the hook for $100K+ until a property sale from 4 years ago was sorted out. There are families that end up going bankrupt needlessly just because a parent wanted to "leave something" to their children and didn't know about the 5-year-lookback trap (Thank George W Bush for that fuck-up, see Deficit Reduction Act of 2005). We were fully aware of the basics and still narrowly averted a financial disaster.

That's something I have noticed too. My girlfriend had to visit several doctors for a problem. One was confused about the notes of the other doctor so I proposed to call and figure it out together. The doctor seemed really perplexed about this suggestion and instead ordered the same series of tests again.

Ah, the hubris of humanity...

Kaiser is amazing in comparison.

With Kaiser, I no longer have to stare into the abyss of the "post-systematic atomized era" of healthcare. I don't have to use CPT codes to compare prices on bills with Medi-Cal rates, study legal agreements to find discrepancies, or repeat myself to every different medical provider I visit. Instead, I can go about my life and focus on the things I care about. Kaiser isn't perfect by any means, but it's astonishingly better than the alternative.

I'm transgender, and transgender care is a VERY complicated beast. I'm a Kaiser member, and Kaiser NorCal (though not SoCal, so I hear...) is about as good as you can get for Transgender care.

Do you know how hard it was to find someone who had some idea what Kaiser (or any insurance) did actually did cover? And even when I did find that out, it was (of course) changing. It took me talking to multiple member services reps and people at both of the regional transgender facilities before I found someone who could refer me to the person who knew.

What resonates most about the article - the "communal" aspect of it all - was around a specific surgery I need - facial feminization. Kaiser has one provider, basically. Great guy. Horribly backlogged - 2 year wait they told me.

Through lots of redditing I found the one person who knows exactly how to work this system. How to file the right grievances with the right language to put everything in order. Things like - you need an appointment with another provider so they can't merely claim there isn't a provider who can't do it. This person has basically walked me through the entire process.

A fun and related fact is that California has a board that handles disputes and does "Independent Medical Review". For facial feminization surgery, this amounts to them deciding if given traits of a face fall within feminine norms (which would make the surgery aesthetic, and not covered) or not (which would make the surgery reconstructive, and covered). I've read a bunch of them that go both ways. A really weird experience (the decisions are publicly available!)

The ability to "work the system" is entirely too necessary - never mind the cost, hassle, and everything else about it. You need "bureaucratic perseverance". You absolutely need to be ready to call, mail, file papers, whatever it takes to kick up a fuss. And if you have somebody who knows how it works on your side it's SO much easier.

Ironically, the author found peace by hiring a consultant - back to square one - a one on one transaction between two humans without a middleman.

This flaw will be extremely difficult to fix for as long as its nature is perceived as "freedom" or "choice".

Software can't fix political problems...

Bucky Fuller predicted that we would describe our problems to the computer and it would calculate the optimal deployment of resources to solve them. He estimated that we would have the technology to supply everyone on Earth with a decent standard of living by sometime in the 1970's, provided that we used our resource and technology efficiently. In other words, if you accept Bucky's point, all of our problems now are psychological rather than technological. (We have all the technology we need.)

Standard of living problems have mathematical solutions, psychological problems don't.[1]

> hire an independent health care administration consultant

"Add another layer of abstraction."

But now the consultant has a clear disincentive ($150/hour!) to fix the problem.

The U.S. health system is pathetically broken, and I have no idea how to fix it. This seems like a poor solution, even though I can understand why the author would do it.

I really feel for the author. My mother has dementia and is slipping away fast. Thankfully my sister has the time and energy to move back in with our mother and care for her. She's also with Kaiser-Permanente which seems to let us avoid the worst of the systemic problems. So, in a way, we're really lucky.

[1] "psychological problems don't [have mathematical solutions]" Although... There is something called Neuro-Linguistic Programming (the other NLP) that is a kind of model of psychology that does admit of algorithm-like protocols for therapy. E.g. the "Five-Minute Phobia Cure" which is an algorithm that cures phobias.

But their pay is terrible compared to specialists, especially when you consider medical school debt and that they don't start earning until years later than most. They have diminishing power in the hospital organizations unless they go into management. There are exceptions, but most medical students with options don't choose Primary Care.

For specialists, the model is just as broken. If you do procedures, you are incentivized to do procedures. Sometimes this is the best option for the patient, sometimes it's not, but you are going to get paid one way and not the other. And there is a good chance that unless you are at a top-tier academic hospital, there will not be anyone around to second guess you unless you realllllly screw up.

There is also tremendous pressure to produce, which is why doctors triple book fifteen minute appointments, and you end up in freezing the waiting room with no LTE for two hours. A good doctor would love to spend more time with you directly, and a lot more time managing your care, but that's not what the system incentivizes. And tying compensation to quality ratings is hugely problematic when the job is to often tell people they are fat alcoholics who need to quit doing opiates.

My wife is a doc, and it breaks my heart when she says she wouldn't recommend it for our kids.

This is called a patient advocate. Think of them as your healthcare guardian.

Sometimes you hire one, sometimes one will be assigned to you in more progressive healthcare systems. If you are fighting a chronic or potentially lethal disease, I highly recommend one.

Edit: Your patient advocate is usually covered by insurance if they work for the hospital or the insurance company, but not if you hire them directly. Take that for what you will.

I have been through some similar experiences myself. Not as bad, but enough to find OP's story not-really-remarkable.

This is what we've got for healthcare in the USA. I wish it was fixable, but I do not believe it is. Powerful interests will resist or subvert any substantive change. (I do expect new "reforms" that will promise fixes and then pump even more money into the broken system, though.)

If you get sick, hope that it is something utterly routine that your applicable system will process without a hiccup. Failing that, expect this kind of craziness and prepare for it. Defensive record keeping and navigating bureaucracies will be necessary skills in 21st century USA.

Once you've seen it, the communal/relational mode of interaction is immediately easy to spot and is actually a very rewarding way to interact with people. Although it doesn't happen as often in large cities except among large families or tight-knit ethnic groups, I think a well-functioning workplace should have some of it. People helping others out, getting to know each other, and so on. The problem is the conflict between the way the health care system presents itself and is organized (systematic/transactional) and the way it really works.

Tips on seeing the communal mode and maybe practicing a bit: Note how your group of friends relates when they're camping or otherwise on a trip of some kind. Spend some time in a smaller town where you know at least a couple people. Spend time with lower-income people from a similar background to you, who have to rely on each other more versus their bank accounts. Outside large cities, ask people at the stores or wherever how they're doing and actually care about what their response is.

> My mother’s mild dementia began accelerating rapidly a year ago. I’ve been picking up pieces of her life as she drops them. That has grown from a part-time job to a full-time job. In the past month, as she’s developed unrelated serious medical issues, it’s become a way-more-than-full-time job.

I would have kept my mother out of the healthcare system and let her pass at home or in a hospice. You can't save someone from dementia and old age, don't even try, you are just prolonging their pain. Let her drop the pieces of her life and leave them there. Lymphedema treatment? She's 84 years old with dementia, she isn't going to get up a run a marathon, why would you treat this?

I say this having never have dealt with a dying parent, so this may be ignorant on my part. I am sure it is difficult standing by while a loved one fades. I think it would be better to spend a few stress-free, happy months in a hospice than years running around between the confusing, painful, stressful mess that is the healthcare system.

So if it worked properly, US healthcare would cost one quarter if what it does. Less, once the people engaged in trying to talk to each other are no longer required. That's quite a statement.

Every office in the world can use non-fax communication technologies; they just have policies that prevent them. If they encounter a sufficiently large healthcare entity that simply shrugs at them and says "we don't do faxes," those policies won't matter, for precisely the reasons stated in the article. People will do what needs to be done to get things to happen, policy or no (if they care; if they don't, it won't get done, regardless of the number of fax machines involved.)

One organization making a stand could start the process of getting us past that particular perverse element of the medical system.

Are the confused rules Anthem’s fault? I imagine that the 1600 pages try to reconcile federal, state, and local legislation, plus the rules of three federal regulatory agencies, nine state agencies, and fifteen local agencies. All those are vague and conflicting and constantly changing, but Anthem’s rule-writing department does their best. They call the agencies to try to find out what the regulations are supposed to mean, and they spend hours on hold, are transferred from one official to another and back, and eventually get directed to a .gov web site that says “program not implemented yet.” Then they make something up, and hope that when the government sues Anthem, they don’t get blamed for it personally.

Anthem doesn't do their best to help people navigate their insurance and get solid answers. Individuals within the company may do their best but the company itself chooses how to fund those departments, how to run them, etc. Healthcare is confusing because 'healthcare explainers' and 'insurance navigators' are cost centers and so our privatized system places no real emphasis on them.

Besides it's not like these rules emerge from the ether either, they exist as a response to shady tactics by insurance companies. Surely we're not so far removed to have forgotten all the abuses of pre-existing conditions by insurance companies?

I might be able to say this isn't the fault of healthcare and insurance companies only so far as it's the fault of government for not just ending the charade and making the whole thing public.

It’s like one those post-apocalyptic science fiction novels whose characters hunt wild boars with spears in the ruins of a modern city. Surrounded by machines no one understands any longer, they have reverted to primitive technology.

Except it’s in reverse. Hospitals can still operate modern material technologies (like an MRI) just fine. It’s social technologies that have broken down and reverted to a medieval level.

Systematic social relationships involve formally-defined roles and responsibilities. That is, “professionalism.” But across medical organizations, there are none. Who do you call at Anthem to find out if they’ll cover an out-of-state SNF stay? No one knows.

The author recommends hiring a consultant. I'd like to suggest an alternate approach.

In complex disputes between parties, we have several systems or dispute resolution. One is to engage the services of an alternative administrative system: the courts.

While Anthem may be governed by 1,600-page rule-books, a judge is not. Or rather, a judge has a different set of rule books and considerable autonomy to make decisions independently.

(With provisions for review.)

One way of considering this is as a collapsing of complexity: where a system becomes too complex to function reasonably, a third party is called in.

The U.S. healthcare "system" has become vastly too complex to function with any semblance of sanity. It is in desperate need of a complexity constraint being applied to it. What we might in other political contexts call a revolution. Perhaps a reform.

But it seems vastly beyond the realm of incremental change.