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.

Consider the example the OP gives is a patient who they're paying thousands of dollars a day for, rather than hundreds. They're paying several people to work for days just to figure out how the rules work. It's only marginally working for them.

And let's not forget that they are also fighting profiteering on the other side; is it inherently wrong that your insurance might not pay for a new brand-name medicine that costs 100x as much as a generic with only the barest minimum difference they could sneak past the FDA and get a patent for?

I have Kaiser. Kaiser is a special beast, but one thing it does do pretty well is talk to itself. Combining providers and insurance under one roof provides a lot of upside in knowing what will be covered (though it has the downside that you really don't have options if Kaiser isn't getting the job done).

I recently had the experience of setting up a procedure done by an entirely private (accepts no insurance) practice, because Kaiser wasn't coming through for me. I was shocked how easy it was.

In one phone call, I was able to set up a consult, and even a tentative date, for a fairly complicated (day-long) surgery. Craziest of all? I got a price estimate. (It was 5 figures, but I expected that)

That was something I thought just wasn't possible in the medical world. There's so many variables, they haven't seen my X-Rays, etc, etc, etc. But still they did that. Entirely for profit, though.

I'm not saying for profit is the answer to everything or anything - someone less fortunate than me wouldn't even be able to consider going outside of Kaiser. Just that there aren't any easy solutions. I'm surprised by the system almost every time I interact with it.

If profit-seeking destroyed markets for profit, we would all be starving.

Given that our government has proven incapable of subsidizing healthcare in a way that promotes a combination of efficiency and effectiveness, it makes total sense that people would try to make a profitable business that meets the needs of our citizens. That's just how capitalism works.

Edit: To those downvoting me, can you please explain? What flaw do I have in my logic?

We don't have to create some new system from scratch. Medicare already exists, and it's extremely efficient[0]. Medicare-for-everyone is arguably the best path forward to a national healthcare system.

[0] https://www.healthaffairs.org/do/10.1377/hblog20110920.01339...

> According to the Kaiser Family Foundation, administrative costs in Medicare are only about 2 percent of operating expenditures. Defenders of the insurance industry estimate administrative costs as 17 percent of revenue.

Considering that software companies frequently fail to succeed at re-writes with something as inconsequential as software, what makes you think society can do it with something as consequential as healthcare? Especially considering that healthcare is in many ways much harder and more poorly understood than software?

Yes and no. Can you name even one specific example of this being done with software on a scale within even an order of magnitude of "healthcare"?

Certainly people fork and rewrite software all the time. But almost all of those projects fail to replace the 'old version'.

And even large software projects that are rewritten are often (heroically) written so as to be (maximally) compatible with the ecosystem of users.

> The only obstacles are political and legal, which can be overcome in one or two election cycles.

This is both wildly optimistic and pessimistic. Vermont voters passed a single-payer referendum (but the government decided to cancel the plans because of the estimated cost). I'm not sure that there's much of anything stopping a single city from doing so (besides things like free-healthcare tourism).

Even if we stipulate that The Hypothetical Medical Regulation Act of 1983 was somehow the miraculous embodiment of perfect medical regulation for 1983, it would be causing major problems for the medical system today. Mere time would be enough to cause problems with medical regulations, and alas, they aren't perfect to start with, and they seem to be ever-growing in size, and there's no way the complexity growth is merely O(n). We've almost certainly passed the point where regulations are appearing for the sole purpose (if one did a full cause analysis) of dealing with the fact that regulations are blocking the system up.

(My biggest objection to "national healthcare" is that unless you find me some different authors to write it than our current Congress and current regulatory state, I have approximately 0.001% confidence that "nationalizing healthcare" will fix this. Advocates of nationalizing healthcare would have a much easier time convincing me if Obamacare had simplified health care, instead of massively adding to the pile of regulations and massively empowering more regulations going forward.)

I think that as things have evolved more and more quickly (rate of technological change, complexity of systems, increasing amounts of information/data, amount of knowledge and requisite volume and velocity of learning required to keep up), it has surpassed our ability to absorb/reason effectively and it continues to get worse.

I think the reason humanity is struggling to try to get AI (to help us carry the load) is related.

I think that there is a trend here, at least in Western culture, we can see manifested by the size of industries. If you look at the biggest industries contribution to GDP, they are also some of the most complex industries[1]. It seems that, among other things, when you have many individual players and groups with competing agendas, money and complex systems, you have these issues.

Perhaps it is literally survival manifesting itself in the modern age.

Anecdotally, I also see people looking to the past for simpler techniques and "core" knowledge, trying to find more general, longer-term survival/coping skills that cut across time and technological change.

[1] https://www.worldatlas.com/articles/which-are-the-biggest-in...

Usually, old folks develop an ever growing list of aliments which add up over time, usually one serious medical crisis every few months to a year until their number is called.

Moreover, many of aliments of old folks aren't "terminal". You can't take your octogenarian mother to the hospice, for instance, because she broke a hip, had a stroke, got sepsis from a UTI, or suffered a venous ulcer that put her in a wheelchair (all those happened to my mother in a span of 2 years).

Also, "dementia" (not to be confused with Alzheimer's) is a side-effect of something else rather than a condition in itself. A simple infection is enough for an elderly person to develop dementia to the point where she does not know where she is. Even a pain-killer regimen requires careful management to keep the patient on a knife-edge between lucidity and la-la-land.