TL;DR:

Much of my time for the past year has been spent navigating the medical maze on behalf of my mother, who has dementia.

I observe that American health care organizations can no longer operate systematically, so participants are forced to act in the communal mode, as if in the pre-modern world.

Health care is one leading edge of a general breakdown in systematicity—while, at the same time, employing sophisticated systematic technologies.

Communal-mode interpersonal skills may become increasingly important to life success—not less, as techies hope.

For complex health care problems, I recommend hiring a consultant to provide administrative (not medical!) guidance.

Epistemic status: impressionistic blogging during a dazed lull between an oncologist and an MRI. No attempt to validate with statistical data or knowledgeable sources.

No system

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.

The most time-consuming aspect has been coordinating the dozens of different institutions involved in her care. I had read that the biggest failing of the American health care system is its fragmentation; I’ve now spent hundreds of hours observing that first-hand.

There is, in fact, no system. There are systems, but mostly they don’t talk to each other. I have to do that.

It’s been fascinating watching people working in hospitals and medical offices trying and failing to communicate with each other. I’ll tell one story, and then explain a pattern. This is the most dramatic instance I’ve encountered so far, but is typical in form.

The short version is that at least seven experts spent roughly ten full-time days trying to find out a basic fact about my mother’s insurance, and finally failed. Meanwhile, many thousands of dollars were wasted on unnecessary hospitalization.

This is a stark example of medical cost disease, but the post is not about that. It’s about how institutions fail to talk to each other—and what that implies about our future.

(If the story gets boring, you can skip ahead to my interpretation of the pattern.)

My mother went into the hospital a month ago with severe pain in her hip. (It’s still undiagnosed.) After two days, she was medically ready for discharge from the hospital: whatever the pain was, it wasn’t one they could help with. Instead, she should be sent to a “skilled nursing facility” (SNF) where she’d get “physical therapy,” i.e. leg exercises.

For a SNF to agree to take her, they had to get confirmation from an insurance company that insurance would cover her stay. She has two kinds of health insurance, Medicare plus coverage through a private insurer (Anthem). Which would cover her? Or both, or neither?

SNFs have admissions officers, whose full-time job is to answer this question. Two different SNFs started working on the problem. I talked with the admissions people every day. Both claimed to be working on it more-or-less full-time. The hospital wanted to free up my mother’s bed, so their insurance person was also working on it.

Days passed. The hospital doctor on rounds said “Well, this is typical, especially with Anthem. It’s costing them several thousand dollars a day to keep her here, versus a few hundred dollars a day in a SNF, but it might take a week for them to figure out which local SNF they cover. Don’t worry, they’ll sort it out eventually.”

Meanwhile, I learned that Anthem and Medicare were confused about their relationship. (As far as I can tell, this was a coincidence and not the underlying problem, although I’m still not sure.) Medicare believed that my mother (who retired in 1997) is employed and therefore ineligible. Her Anthem coverage is through her former employer.

I talked with her ex-employer’s benefits person (whose full-time job is understanding insurance, pretty much). She looked into it and said she couldn’t understand what was going on. She called the company’s outside insurance consultant. He couldn’t understand what was going on. He called people he knew at Medicare and Anthem. He said that they couldn’t understand it either, but that multiple people in both organizations were working on straightening it out.

A week later, I called Medicare to verify that it worked. The surprisingly competent customer service person looked up my mother’s info and said: “This is really weird… I don’t know what’s going on… there was a record that said Anthem is primary. And then on November 16th, there’s a note that said it’s deleted, and Medicare is primary. But then there’s an update on the 18th that says Anthem is primary. But obviously since your mother is 84 she’s not employed, so Medicare should be primary… I’ll delete the record again…”

After three days of trying, one of the SNFs gave up. I talked to the admissions dude there. I’ll call him Paul. He was smart and friendly, and he was willing to explain:

My full-time job for ten years has been understanding how to get insurance to pay us, and I have no idea how the system works. Even if I somehow learned how it works, it changes completely every year, and I would have to start over. But at most of the insurance companies I know people who can sometimes make things happen, so I call them up, and then they try to figure out how it works. But Anthem… I spent hours and hours on hold, and in phone trees, getting transferred from one department to another, and eventually back to where I started. The most clueful-sounding person I could find sent me to a web site that just says ‘This program is not implemented yet.’ Does ‘program’ mean software, or does it mean some project they haven’t got going?

Hospitals are bad places that make you ill; you don’t want to spend any more time there than you have to. On day six, I said “if she doesn’t go to a SNF today, I’m taking her home—the risk of her dying there seems less now than the risk of her dying here.” That got results: the other SNF agreed to take her “on spec.” Their admissions person was reasonably confident that either Anthem or Medicare would pay, even though neither was willing to say either yes or no ahead of time.

The SNF called me to tell me they needed my mother’s records from the hospital. Well, what do you want me to do about that? We need you to call the hospital and ask them to fax us the records. “Fax”? Why not send clay tablets in wicker baskets on the back of a donkey?

No interface

To ship a package by FedEx, you don’t need to call someone who knows someone who knows someone. You go to a web site, put in some numbers, it gives you back some numbers, you put them on the envelope, drop it in a box, and it appears at a farmhouse on an island in Lapland the next day.

If Amazon sends you the wrong type of cable adapter, you don’t have to call them up and try to act pathetic and virtuous in order to convince someone that you need and deserve a refund because your poor mother is so ill. You go to a web site and push a button.

FedEx and Amazon have systematic interfaces. They are transparent on the outside, and black boxes on the inside. You don’t have to know anything about how they operate in order to use them.

Health care organizations are—at best—the opposite. They may run on systems internally, but the interface is opaque. There’s no defined way to get them to do something.

This is not their fault.

No fault

I was trying to get my mother into a SNF—but all I could do was talk to Paul, who couldn’t say yes or no. It wasn’t his fault. He was trying to talk to people at Anthem, who couldn’t say yes or no. Was that their fault?

Just speculating, I imagine they are supposed to apply 1600 pages of rules for what’s covered in what situation. And the rules are vague and conflicting and change constantly, and who can read 1600 pages of rules anyway? So eventually someone has to make up a yes-or-no answer on the basis of what seems more-or-less reasonable. Whoever it is could get blamed if someone higher up later decides that was “wrong” based on their interpretation of the rules, so it’s better to pass the buck.

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.

I imagine people working in legislative offices and regulatory agencies find themselves in a similar position.

In this maze, even competent people with good intentions cannot act systematically. Their work depends on coordinating with other institutions that have no systematic interface.

Traditional life in the ruins of systematicity

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.

What do you do when systematicity breaks down? You revert to what I’ve described as the “communal mode” or “choiceless mode.” That is, “pre-modern,” or “traditional” ways of being.

Working in a medical office is like living in a pre-modern town. It’s all about knowing someone who knows someone who knows someone who can get something done. Several times, I’ve taken my mother to a doctor who said something like: “She needs lymphedema treatment, and the only lymphedema clinic around here is booked months in advance, but I know someone there, and I think I can get her in next week.” Or, “The pathology report on this biopsy is only one sentence, and it’s unsigned. The hospital that faxed it to me doesn’t know who did it. I need details, so I called all the pathologists I know, and none of them admit to writing it, so we are going to need to do a new biopsy.”

But at the same time, each clinic does have an electronic patient records management system, which does work some of the time. And there are professional relationships with defined roles that operate effectively within the building.

I suspect increasing “patchiness” of systems may be typical of our post-systematic atomized era. Understanding the medical case may help predict the texture of cultural and social life as atomization proceeds.

A central research topic in ethnomethodology is the relationship between formal rationality (such as an insurance company’s 1600 pages of unworkable rules) and “mere reasonableness,” which is what people mostly use to get a job done. The disjunction between electronic patient records and calling around town to try to find out who wrote a biopsy report that arrived by fax seems sufficiently extreme that it may produce a qualitatively new way of being.

I would like to ask:

How does health care continue to function at all?

Can it continue to function at all?

How do people within the ex-system navigate a world that mashes up high-tech infrastructure that only sometimes works with pre-modern social relationships across organizations?

How do they understand this contrast? How do they cope personally?

What can we do about it?

Maybe an ethnomethodological understanding of how health care organizations operate in practice could make the systems work incrementally better. Maybe an enlightened COO could incorporate the view that the systems and reality are only vaguely related. But… it may be impossible to improve individual organizations.

No local fix

It’s obvious how to fix health care. Just make everything run systematically, like FedEx or Amazon. There are no technical or business obstacles to this. Anyone who understands IT and/or business can see how to do it.

Back-of-envelope calculations say a working health care system would deliver dramatically better quality at 10-20% of the current cost.

Health care is notionally a profit-driven free market. This looks like an easy opportunity to make trillions of dollars by making the world better for everyone. Why doesn’t someone do that?

It appears that 73% of the labor cost of a health care organization is spent on trying to communicate with other health care organizations that have no defined interface. Patrick Collison has suggested calling this pattern “Leibenstein’s Inefficiency Disease,” by analogy to Baumol’s Cost Disease. An organization can’t improve the 73% by much on its own; that inefficiency is forced on it by the environment it operates in.

Instead, organizations in sectors afflicted with inefficiency disease try to push their own administrative work outside. Both out into other organizations, and—more visibly—they force it onto you, the customer. It’s your job to fill out forms they could have done more efficiently themselves. When they screw up, you have to try to fix it. This negative externality could be called “paperwork pollution,” by analogy with negative externalities of smokestack industries.

Standardizing an interface between health care providers and insurance companies would be a huge win. No matter how badly designed, it would be better than the current mess, and save several percent of US GDP. That would need cooperation from most of the major players in the industry. Other industries manage that routinely: machine screws and futures contracts come in standard sizes, without which manufacturing and finance would be as inefficient as health care. The need for a standard insurer/provider interface is obvious. Since it’s lacking, I imagine some powerful group extracts enormous rents from the inefficiency. I know nothing about that, so I won’t speculate.

You will need village life skills

Perhaps American health care is a bellwether model for the future of other aspects of life in the post-systemic world? A pattern that occurs in many other sectors: as systems fail, people fall back on innate communal logic. Politics and the media are obvious current examples.

The hope of the tech industry is that “software is eating the world,” as Marc Andreessen put it in 2011. That is, we’re FedEx-izing every aspect of the economy: making it radically more efficient and reliable, using well-designed IT-supported systematic business processes.

In that world, systematic-mode skills (especially programming and finance) will be ever more valuable. Hooray! We will create a utopia for all, in which (for once) those of us with high-functioning autism get properly rewarded.

In 2017, software is conspicuously not eating the cost-disease economic sectors: health care, education, housing, government. They are being eaten—by communal mode tribalism.

In 2017, tribalists are threatening to eat the tech industry.

There’s a possible future in which all systems fall to tribalism. Then everyone dies, because tribal signaling does not deliver electric power. In another possible future, we create a meta-systematic society that addresses the inherent defects of both tribalism and systematicity. (I discussed both these possibilities tangentially in “A bridge to meta-rationality vs. civilizational collapse.” I hope to write more soon.)

In the short run, more likely, current trends will continue. Additional aspects of life will increasingly revert to the communal mode, but some critical systems will fend off the barbarians and limp along well enough to keep us alive.

In that world, people skills will be ever more valuable. Surviving and thriving in 2037 may depend mainly on who you can charm, who you know, and whether they owe you favors.

Techies take note.

You might consider working in a medical office, to get some practice.

Hire a consultant

Some more-serious, practical advice:

If you find yourself in a situation like mine, hire an independent health care administration consultant. Their job is to know administrative people inside organizations who can get stuff done. They also know what can be gotten done, which is unknowable to the public. They can also deal with inscrutable paperwork and organizational screw-ups.

Hiring someone became imperative for me when coordinating my mother’s care got to be a way-more-than-full-time job. (In retrospect, I wish I had done that months earlier.)

It could also be worthwhile in less critical cases, if no one in the family can take enough time off from work, or in which you’d simply rather pay someone else to clean up after a hospital’s paperwork pollution.

This role has developed only recently, as systems have broken down. There’s not yet a standardized term; “health care advocate” is one among several.

Mine specializes in gerontology and dementia. Others specialize in other disease areas; or in other aspects of the administrative nightmare, such as sorting out bogus hospital bills, which frequently include fraudulent additions.

They are not inexpensive (mine charges $150/hour), so not an option for everyone.

There are good and not-so-good advocates. I spoke with several before hiring one. Some were clearly clueless; the one I hired last month has seemed consistently competent.

Since they recommend particular providers, there is an inherent principal-agent problem. Ask if they get any compensation from services they recommend. Take their recommendations with a grain of salt in any case.