When Alejandra mentioned to me that even Raul, like me one of two brothers with an uber rare muscle mitochondrial thing, on a ventilator full time and an awesome advocate too, went ahead with the Ice Bucket Challenge, I replied “if only ADAPT had a meme like that!” So together, Alejandra and I brainstormed a new, ADAPTed version of the challenge, and here it is.
I offer a different focus for the ice bucketed masses on social media, and try to give voice to the views of many like me in disability rights circles: we don’t want “eradicating neuromuscular diseases” to be the only agenda… quality of life is the key, and every day we’re fighting uphill against systems that hold us back from living the best lives we can.
Yes, awareness is great. Yes, medical research is super important, for quality of life too. Politicians who ham it up with an ice bucket after voting to sequester cut the NIH budget so severely that ALS research and all NIH programs had to regroup even more barebones than before shouldn’t be re-elected! Democrats voted for that sequester en masse while the Republicans held out for even more harsh cuts; nominating the lot of ‘em for a bucket o’ scorpions challenge would be more like it.
Neuromuscular research funding should be auto-approved and Raytheon, Northrupp Grummond, KBR and their ilk should have to pass the hat on social media.
Medicaid long-term care still mandates antiquated nursing home care but in-home supports are “optional,” meaning most states offer only spotty or barely-existing home care, and even that is increasingly threatened. Private “major medical” health insurance like Blue Cross phased out coverage of long-term care nationwide in the early ’90s excepting a handful of examples, so unless you’ve purchased a special long-term care plan in your working years to cover full-time care in your senior years, Medicaid is the only place you can turn. Private long-term care plans aren’t available to ALS diagnosed people, preexisting condition y’know, much less sold for the Nicks and Rauls with inborn genetic muscle diseases.
This means the most severely affected by neuromuscular diseases like ALS, the Americans who need full-time care the most, have only the dilapidated 50 states/different Medicaid programs for the long-term care that is so essential for both survival and a life worth living. RIGHT NOW these vulnerable groups are unable to get the needed services and supports for the quality of life that they deserve, with their loved ones in their homes, and face worse conditions than they should because of our insane political system. That fight is RIGHT NOW, not four, five generations hence like the potential cures we seek.
Standing up for the people in the trenches now is important, awareness of our lives, our struggles, our dignity, is crucial oxygen for us as we face daily battles… Visit www.adapt.org to learn more and to donate.
With New Forms of Toxic Waste from the Fracking Bonanza Piling Up, What Must Be Done?
I really like the PBS documentary mini-series Constitution USA, because it brings forward the constitutional arguments that are so relevant to the problems we face in our country today. It explores a worthy cross-section of important legal/constitutional debates with the depth that they deserve, and with refreshing honesty/even-handedness. All the while it stays firmly rooted in our history, frequently referencing the rich backstories of our Constitution, the Bill of Rights, subsequent amendments and laws and the more controversial implementing actions.
The first episode gives an overview of jurisdictional conflicts that are ongoing between states, the federal gov’t and the individual citizens. Some of the issues covered are the more obvious and well-known legal problems between states and the federales, like medical cannabis: can states trump the federal drug laws and re-legalize it? (cannabis tinctures and the like being legal from your local pharmacy in the past)
The Commerce Clause of Article I of the U.S. Constitution gives the federal Congress power to “regulate commerce between the several states,” and that is the basis for so much of our legal and regulatory system, from drug laws and gun control, to water use regulations for toilets (which I blogged about here).
Air and water pollution, with its effects on multiple states and countries, seems an obvious place for federal intervention to me, and the number of federal regs waived during the past decade—the carte blanche given to mountaintop removal and hydraulic fracturing—should concern all Americans. In many areas, there ought to be more and better regulation: for example, given ProPublica’s recent reporting, it sounds like Ohio will be dotted with radioactive Superfund sites like a constellation is dotted with stars if the legislature in Columbus doesn’t get serious about regulating the toxic (and sometimes radioactive, including content containing RADIUM) waste that’s unintentionally unearthed as a byproduct of the fracking boom.
Inevitably, the various waste byproducts generated by fracking are dangerous if safety measures aren’t followed [see the facts on the difficulties disposing of fracking wastes]. Not only does the fracking process involve inserting hydraulic fracking fluids®, proprietary mixes of chemicals to facilitate fracturing, some heavily depending on known health hazards like benzene, into the earth, the extraction process also unearths things that should stay earthed, like naturally occurring radioactive materials, richly accumulated over eons, especially so deep in shale. Radon, uranium, thorium, and especially radium have been confirmed living in the waste “brine” alongside the oil and gas (and the heady mixture of man-made chemicals, benzenes, et al, just injected) pulled from shale deposits, alerting all concerned to the risks associated with fracking wastewater.
gas production from the 400 million year-old, multi-state Marcellus shale formation, mostly from drilling in Pennsylvania and Ohio, is booming!
Reasonable monitoring and responsible handling is sorely needed, but the politicians that control how (and how much) these newer species of toxic wastes will be regulated see the state’s fracking bonanza as win-win-win-win, pumping in new jobs, new income/GDP, new tax revenue, and new troughs of campaign bribetributions to pig out on.
Politicians representing economically depressed post-industrial hell-holes tend to understand actually regulating fracking as putting speed limits on their state’s gravy train, or as outright flipping the railroad switch to turnout that gravy train onto a competing state’s track, so rival states profit more and more quickly. This may startle readers in not-America, but in the U.S., state governments are usually competing with other (especially neighboring) states to attract Big Business, including fracking operations, to start up in their state, often leading to a distressing “race to the bottom,” evidenced by things like the governor of Alabama meeting with German automakers to offer them more state-sponsored bribe money “incentives,” less costly labor, and fewer worker protections than other states where they could put down roots… this “jobs race” is deeply embedded in our political ecosystem. Even the more liberal representatives will likely prefer looking tough on polluters without actually regulating fracking in a meaningful way and risking accusations of “harming the district’s economy.” Political cowardice and faux populist outrage at the polluters is the norm.
Of course, once you understand what Ohio has been through, “post-industrial” meaning that industry has left, offshored production to China or wherever had won the jobs race that year, joblessness everywhere, cities just “gone,” it’s easy to sympathize with the desire to be as fracking-friendly and job-attract-y as possible. I think of Chrissie Hynde, singin’ “I went back to Ohio, but my city was gone…” and that was the ’80s. Gone Ohio cities are even gonier now.
Shale gas is the closest thing to a gold rush this country’s seen since the initial oil boom nearly 100 years ago, and desperation for gas drilling jobs makes it really hard, societally, to regulate and enforce with a long-view toward the public health consequences of benzenes, radionuclides, and so on.
In neighboring Pennsylvania, where the economics and politics of fracking are similar, radium was found in rivers where fracking wastes were released, and “internal” studies leaked to the New York Times in 2011 detail the alarming data:
…state records indicate that the radium levels found in Pennsylvania wastewater are much higher than those used in this study. Radium, for example, was found in Pennsylvania at levels over 18 times the number used in the this study. It should be noted, however, that this study did not detail actual cases of increased cancer. Rather, it modeled potential increases in cancer rates as a result of radium-laced drilling waste being discharged into large waterways.
… Asked to review the study, an expert on human health and ecological risk analysis said that it clearly shows that the drilling waste is not sufficiently diluted in some cases. As a result, the radioactivity levels left behind in receiving waters come close to reaching the threshold at which the E.P.A., under federal Superfund rules, requires a cleanup, the risk expert said.
The revelations from the leaked studies raise some troubling, difficult questions… one is, if you’re at the radioactivity threshold that triggers the creation of a federal Superfund site, how would you turn part or all of a river into a Superfund site?
What unintended consequences will radium in the water have on freshwater sealife and the humans that depend on these freshwater ecosystems? If it’s a blend of radionuclides, benzenes and other horrors, what effects do these have on lifeforms
Invasive uber carp become biped super soldiers after too much river radium? (Actually the Hath, a Piscine humanoid species from one of my favorite Doctor Who episodes, “The Doctor’s Daughter“)
This ProPublica exposé uncovers just how lax Ohio’s been about toxic waste. Regulation is “muted” to the point they’ve become a top destination for other states to dump radioactive fracking waste.
Fracking wastewater is collected in special trucks like these in Pennsylvania, and moved elsewhere (Ohio?). Source: NRDC Switchboard Blog
Yes, hydraulic fracturing (“fracking”) has been used to get to oil and gas since the late 1940s. Yes, the radionuclides are originally “naturally occurring radioactive materials” (NORMs), not a problem if left in their natural configuration, spread out, trace amounts. But once you inadvertently pump large amounts of these out of shale, concentrate them, mix them with other terrible things, it becomes something different—TENORMs (technologically enhanced naturally occurring radioactive materials)—something you REALLY don’t want in your water supply. Refer to the horrible fate of radium’s discoverer Marie Curie if you doubt that radium is hazardous.
To my core questions, things that I’ve brought up again and again in recent bloggings, what, why, are the systems and rules that enable, or fix (or exacerbate) our problems?
Similar to the inaction around the multi-state + Canada invasion of Asian Carp, something I’d previously blogged about here, the constitutional system we have provides ways to deal with the issue, but no one is stepping up and adequately addressing the problem. The multi-jurisdictional nature of our system enables struggle, appropriate checks and balances, collaboration, but also gridlock and EPIC FAIL if the human beings at the helm of the different gov’t branches and agencies are corrupt and/or ineffectual shampoo models.
What must be done about the toxic wastes left behind by the shale gas rush?
One can easily imagine the preserved head of James Madison judging medical cannabis, and indeed all medicines and drugs, the province of the individual citizen and/or “the several states,” as centralized decision-making for the entire country, especially where commerce and a man’s personal habits are concerned, would be perceived as positively British and anathema to the whole constitutional project.
But it is much more difficult to envision the framers’ possible positions on environmental law. The founders, especially the Virginians, often distained the prospect of an industrialized United States, as debates over which ways of life were best, the most free, the most moral for the developing nation—profit was far from the only objective—were commonly considered as the Constitution took shape, and afterwards. Cities in general, and wage labor for Big Business industries in particular, were largely seen as part of an unfree, corrupt, dirty system, “a wretched hive of scum and villainy” at odds with the Jeffersonian vision of a society of self-sufficient yeomen farmers, hyper-moral because they’re dependent on no man (except for all the slaves, though this is typically omitted from the sweeping “Empire of Liberty” narratives). The Constitution’s framers couldn’t hammer out a solution for phasing out the slave system that supported (and simultaneously threatened) the kind of economy they wanted—agriculture, shiny independent freeholds—much less did they legislate for socio-economic arrangements they hoped to avoid, factories and mills.
The consequences of large-scale industrialization, air pollution blowing cross-country, water contamination in one state affecting other states downstream, were inconceivable in the late 1700s. Our founding people don’t really offer us any guidance on these issues.
Madison tended to view state governments as unavoidably, intractably corrupt, and that was one of his main arguments for the Constitution and new, more robust federal government: that the people must have watchdogs to guard their rights and liberties against the corrupt excesses and overreaching laws of drunken state legislatures, another crucial check on the tyranny of the majority. But today, few would argue that the federal gov’t is less corrupt, or are better regulators. On the other hand, who else but the feds can deal with water pollution in a river shared by six states?
How can effective regulation and enforcement in the service of long-term public health outcomes be achieved in this time of corruption, deceit and regulatory capture? How can our constitutional system cope?
Part 4 of 4 of the series When Life and Death is “A Matter of Policy”
For part 2, I wrote an overview of some of the bad things that have occurred when people in medical settings follow policy strictly even when it leads to horrible consequences, or in the case of Eric Garner, they don’t follow anything (aside from what the cops said) with horrible results. In part 3, I covered the psychology of obeying.
For the last part, I look at what some med-people of conscience have said about obeying bad top-down mandates, the VA kerfuffle, and related issues as our medical ecosystems undergo tectonic shifts in the U.S. with very mixed, highly debatable, results.
I’ve always been drawn to posts blogged by nurses, doctors, RTs, et al…
“VA Red Tape” by John Darkow, Columbia Daily Tribune.
and for understanding the complexities of the overlapping universes (univerii? the multiverse?) of health care models and their rules and regulations, the medical bloggers out there are invaluable.
Dr. Marc-David Munk, blogging from his unique vantage point as “Chief Medical Officer” of an ACO in Central Massachusetts, explains the paradox behind the epic fails seen at the VA and other “big healthcare” institutions: the more top-down mandates, rigid accountability rules, and abstract “performance metrics” are imposed, the more you accelerate crapification¹, enable unaccountability and cooking the books, remove front-line staff’s decision-making powers, and lessen patient-focused medicine.
Dr. Munk deftly unpacks the weirdity:
It’s a common story to anyone who has been around big healthcare: senior management attempts to respond to a business problem by implementing a series of high level mandates that remove front-line management’s ability to think and make operational decisions.…
…A cascade of things happens with high-level mandates: Senior management becomes obsessive about setting and measuring metrics. The degrees of freedom for people to make patient-focussed care decisions diminishes and every manager along the way starts to feel squeezed on all sides. Some find work-arounds such as the secret set of “waiting lists” kept off the books at the VA and the false reports generated by some.
I hope to blog more about the issue of the supply of health care in the future. The Affordable Care Act and Medicaid expansion (see my post explaining the Medicaid expansion) boost access to insurance (and ostensibly health care) without a corresponding effort to expand the supply of doctors, nurses, hospitals, and so forth. Though I disagree with libertarian sources like Reason Magazine on most issues excepting civil liberties and bad, counterintuitive regulations being bad, I gotta give ‘em a big tip of the hat for addressing the supply of health care and the many unnecessary choke-points in the supply pipeline head-on: Video: How to Grow the Supply of Health Care RIGHT NOW!
Paul Levy, a former hospital CEO whose bloggings at Not Running A Hospitalled me to Dr. Munk’s blog to begin with, is running down part of the health care supply problem: monopoly. Embedded in the Bay State, Not Running A Hospital is giving much needed scrutiny to the recent deal with Partners HealthCare and the Attorney General Martha Coakley, the behemoth corporation that owns Massachusetts General Hospital and Brigham and Women’s Hospital, both affiliated with Harvard, allowing them to eat South Shore Hospital and related doctors’ practices and ultimately become more scary and behemoth-y, the prices even gougier. “…it cannot be in the public interest to permit a dominant provider to become still more dominant” Levy points out in his letter to the trial court set to rule on Coakley’s “anti-trust settlement”—read his full letter here.
He deserves not only an award for activism but an award for blog journalism, as he has pulled together an excellent collection of factual information about Partners HealthCare and the ongoing anti-trust dispute in a way spin-doctored news media don’t, and examined things, like Gov. Patrick’s unserious “wait and see” lip-service, that the news media won’t.
And this brings us full circle back to the concepts I began this series with: rules, regulations and policies decided in boardrooms, courtrooms and back-rooms have an enormous affect on all our lives, especially when you’re a “patient.”
Like Lambert Strether at (terrific blog critical of big finance) naked capitalism wrote, the way the corporations code their systems—the computer code, the 1s and 0s—increasingly is becoming the law. Notably in cases of big banks’ mortgage databases that perpetrated mass-scale fraud, the courts just assessed penalties per offense, “cost of doin’ bidness” for banks, and the big databases roll on, slapped on the wrist but essentially made legal after the fact.
Step one: Code the system. Step two: Rewrite the law to match the code, and grant immunity. It is, after all, better to ask for forgiveness than permission.
It’s symptomatic of a weak state and broken legislative branch(es). More and more, we need to lobby the corporations, the guys who control “the code” and the related bureaucracies—my focus is medical bureaucracy —just as much or more than the public officials who ostensibly run things in a democracy.
We’ll need good bloggers, good advocates, good blog-journalists and blog-activists. The aforementioned blogs are great examples of what that can look like. I hope to be a part of it.
1. crapification – coined by Yves Smith (nom de blag of Susan Webber, head of naked capitalism) to describe the ever crappier quality of consumer goods and services as everything inexplicably succumbs to “the race to the bottom”… “…long-overdue and largely futile backlash against the crapification of almost everything“…
Part 3 of 4 of the series When Life and Death is “A Matter of Policy”
In part 2, I examined some of the bad things that can happen when people in medical settings apply “the rules” strictly, unmodified by the patient involved or the dictates of conscience. Now I’ll look at the what and why of human obedience…
The Milgram experiment on obedience to authority figures was the one of the most extensive and certainly the most well-known study of obedience ever conducted. The Milgram experiment was a series of social psychology experiments designed and run by psychologist Stanley Milgram in the summer of 1961 specifically to test how far “Just following orders!” goes with Americans, to answer “could genocide happen here if framed by authority figures as lawful?” “Could it happen here?”
Dr. Milgram was keenly interested in how social context affects behavior, and also was an early creator of educational films. He made a film about the obedience experiment along with other films teaching social psychology.
Milgram’s educational film: In certain contexts you do things you would not do in others. In this film clip, Dr. Milgram explains “…in this setting I willingly expose my neck to a man with a razor blade.” Source: this youtube clip
For the experiment on obedience, Dr. Milgram et al carefully selected the study participants to screen out psychos, any abnormal psychology excluded, so the subjects were your totally normal New England Christian people for the most part. He had researchers telling the subjects to shock the unseen “learner” in the next room when they supposedly got the memory questions wrong, shock people with the (not actually real) shock box, increasing the power of the shock successively. In Milgram’s first set of experiments, an incredibly disturbing 65 percent of participants went all the way up to the massive experiment-ending 450 volt shock.
the infamous Milgram experiment shock box, with switches and in red letters EXTREME INTENSITY SHOCK
Men and women showed identical willingness to kill the “learner” with fatal shocks, though the experiment isn’t about killing, it’s about obeying bad things and inflicting pain on others. In the course of the experiments, the experimenter (the authority figure) would urge the subject to continue, to “please go on,” and re-assure them that the electric shocks were their job, part of something necessary, non-deadly and that the researcher is legally responsible. For the subjects, there’s the ambiguity of the volts on the board vs. the experimenter telling them it doesn’t cause “long-term damage,” the authority figure taking responsibility, and the overarching concept that this benefits science.
Med school psychiatry faculty had predicted only 1% of subjects would go to maximum shock, but in the initial experiments and all subsequent (and present-day) repeats of the experiment, regardless of political geography or background, consistently 55-65 percent will go all the way to XXX, the maximum 450 volts. Few variations, like changing the proximity of the authority figure, moving the victim closer, lower subjects’ obedience levels. In a variation where participants had to hold the learner’s arm physically onto a shock plate, compliance decreased but 30 percent still obeyed and administered the fatal shock. Other variations, including age, gender, religion, politics, made no difference, revealing obedience to authority to be one of the few constants of social behavior, unaffected by time and place.
The urge to OBEY the bureaucrats in charge is immense. In this recent repeat of the Milgram experiment for the BBC, 9/12 went all the way to maximum shock 450 volts, only 3 refused. The guy shown refusing seems a totally non-descript random middle-aged white male, so the people willing to tell the authority figure to shove it, that they won’t harm someone, period, fit no particular pattern. People of strong conscience don’t adhere to what you would expect, a certain mold or “type,” it seems closer to “the people you least expect.”
“Ordinary people, simply doing their jobs, and without any particular hostility on their part, can become agents in a terrible destructive process. Moreover, even when the destructive effects of their work become patently clear, and they are asked to carry out actions incompatible with fundamental standards of morality, relatively few people have the resources needed to resist authority.”
Milgram Experiment-like Reality in U.S. Hospitals?
The parallels with U.S. hospitals are disturbingly obvious here.
Doctors, nurses, RTs, et al…
if you’re ordered to follow rules that could hurt or endanger the patient, would you?
Not only do you have authority figures bearing down on you, the administrators have real power to impose repercussions, and you know the supervisors and bureaucrats up close, you’ve observed them in their natural habitat(s) and know that they could really ruin your week if not fire you if you’re “not a team player,” serious powers the Milgram experiment’s authority figures never claimed to have. Throw in fatigue, patient censuses that often mean 1:30 nurse-to-sick-people ratios, and the self-evident reality that hands-on staff in clinical settings may only see a given patient for a few hours or one shift, then poof, but have to deal with the same supervisor(s) most/all work weeks, and you’re probably going to get 90-95% of staff obeying bad things if it were possible to run a Milgram-type experiment in a hospital situation.
The only time that the order to take me off my normal ventilator and put me on the hospital vent was ultimately not followed, was when a charge nurse (who we never saw) apparently stood up for me in the behind the scenes debate with higher-level administrators. Then it is an order that authority figures disagree on, and therefore very different for the front-line staff actually doing it.
James Madison famously wrote: “If angels were to govern men, neither external nor internal controls on government would be necessary.” Like the founding fathers set out to engineer checks and balances since the republic would be led by “men” not “angels,” the medical sphere should have real controls. Not to be harsh or judgmental, I just think we should not assume frail humans, fatigued and under the gun to OBEY the boss, will be moral heroes 100 percent of the time. As “Publius” and also “Publius” (James Madison and Alexander Hamilton) articulated in the Federalist Papers, banking on mankind to be consistently angelic is a really bad bet. Not trying to malign anybody, just trying to look at human social behavior as it is.
Front-line staff need good conditions, whistleblower protections with real teeth, flexibility to improvise, trust in their decision-making, and the main “performance metrics” should be patient outcomes and happiness. You can’t have bad incentives so divorced from patient outcomes, entirely non aligned with the task of helping people, and have functional health care.
VA hospital execs were given performance bonuses $$$$ for meeting certain metrics, like first appointment for veterans after intake within 14 days, and, quelle surprise, the incentives being to cook the books—and as far as I know that structure of cash bonus incentives is still in place—documenting fictions was exactly what resulted, it being in the hospital leaders’ own best interests to rack up performance pay and reassure the higher-ups that their impossible goals were going forward just swimmingly. This is why VA secretary Eric Shinseki was so clueless… the culture was to tell everybody at the top of the VA food chain only what they want to hear.
It’s a cold and bleak world, but there are still lots of good people, people of conscience in medicine who take their oaths to patients (e.g. “Primum non nocere,” first, do no harm) as serious life missions. There are points of light, “diamonds in the rough.” Some of these med-people of conscience have blogs.
In part 4, the finale, I’ll show you what some of my favorite medical bloggers say about the VA fiasco and medibureaucracy.
Part 2 of 4 of the series When Life and Death is “A Matter of Policy”
Annnnnnnnnd we’re back… in part one of this series, I detailed one policy driven by No Discernable Medical Purpose (NDMP), and that’s the “no foreign ventilator” policy hospitals have, affecting me in the past and maybe at points in the future.
In the past, I blogged about paramedics not wanting to move a dude suffering cardiac arrest “because liability,” No Discernable Medical Purpose (NDMP).
Here in the NY metro area especially, paramedics have been in the spotlight lately… not for good reasons, but in connection with the death of Staten Island gentle giant Eric Garner. Garner, known in his neighborhood as “Big E,” was murdered in broad daylight by an illegal NYPD chokehold for talking back to cops who were harassing him for a past pattern of selling “loosies” (single cigarettes). Garner, who wasn’t even selling anything that day, said “this stops today!” and “please just leave me alone,” among similar things, which apparently constituted resisting arrest and justified initiating force against him—an unarmed man—straight up police brutality. Here in NY, Garner’s murder has occupied conversations, newsprint, blogprint, radio and TV, and the role of the paramedics who seemed to make no effort to resuscitate him was/is being investigated, and the EMS team involved was suspended pending the investigation.
It’s evident from the horrifying footage of Garner’s death that none of the normal medical protocols were followed, and all nurses and doctors who have talked about it on the record (see Eyewitness News 7 report) are unanimously flummoxed and dismayed at the unusually lackadaisical approach EMS took. The New York Times spoke to Dr. Alexander Kuehl, who led Emergency Medical Services in New York City during the ’80s. “She certainly didn’t do her job,” he said of the paramedic girl on the infamous cell phone video of the Garner killing.
“She’s totally overawed by the cops. She doesn’t do her assessment at all. There was something very peculiar about her approach.” (full NYT article)
We may never know the full story. It’s apparent from the horrendous footage that the cops waylaid EMS, saying “not yet,” and also telling the crowd Garner was fine and still breathing in order to avert the whole neighborhood going into full-on rioting (crowd control). But that two EMTs + two paramedics took the NYPD assailant’s word for it and didn’t intervene in any of the usual ways is more than a little discouraging. The decisions made, whether directed by the NYPD on the scene, or driven by weird liability fear-related policies, or the EMS supervisor, or all of the above, self-evidently do not reflect advocating for your patient or serving Any Discernable Medical Purpose.
Recently an EMS-related surreal hospital policy also grabbed headlines (in conjunction with the increased scrutiny around the VA scandal) when the policy directing staff anywhere outside of the main buildings to CALL 911 if a patient collapses was followed, and killed a Vietnam veteran who, through unlucky happenstance, had a heart attack in the hospital cafeteria.
The AP reported:
ALBUQUERQUE, N.M. (AP) — A veteran who collapsed in an Albuquerque Veteran Affairs hospital cafeteria — 500 yards from the emergency room — died after waiting around 20 minutes for an ambulance, officials confirmed Thursday.
It took between 15 and 20 minutes for the ambulance to be dispatched and take the man from one building to the other, which is about a five-minute walk, officials at the hospital said.
Kirtland Air Force Medical Group personnel performed CPR until the ambulance arrived, VA spokeswoman Sonja Brown said.
Staff followed policy in calling 911 when the man collapsed on Monday, she said. “Our policy is under expedited review,” Brown said.
In this Dave Granlund political cartoon, wheelchair inaccessibility serves as a visual metaphor for the inaccessibility of V’A medical care/doctors’ appointments writ large. Unfortunately, architectural barriers to medical care are too often non-metaphorical in many parts of the country.
Sadly, this is yet another instance of “No Discernable Medical Purpose” (NDMP). The best medical treatment for this veteran easily WAS NOT waiting for an outside ambulance, after all “every second counts” with a heart attack. What he needed was heroic action by the staff hoofin’ it to get him to the Emergency Room with all possible rapidity, where cardiac crises are something U.S. medicine is set up to handle really well. If their Emergency Dept. has no one who can rapid response with a gurney to code blues in adjacent buildings, that is a matter of leadership and policy too, NDMP as it was not serving a legit medical goal.
Deference to whacked-out policies is baffling, especially in the United States, where you’d expect a bit more spunk and middle-finger wielding to authority figures from the descendants of rebellious colonists who sparked a revolution over the British effort to inhibit their tea smuggling and rum running (among other things). Here, that meek obedience—maybe even “willful blindness“—the higher-ups like to cultivate led to horrible consequences. Sometimes disobedience is needed, even essential, as I also discussed in the post Law and Order: When Is It Wrong to Follow The Law?
In Part 3, I’ll look at the psychology behind the tendency to OBEY, bad incentives at the VA, and how these problems can be ameliorated.
2/4 Series When Life and Death is “A Matter of Policy”
Part 1 of 4 of the series: When Life and Death is “A Matter of Policy”
As I mentioned recently in the quasi-mission statement of the blog, I create bloggings to ask the right questions, to illuminate the unseen issues facing us ignored vulnerable groups, or that’s the goal. Within that is the idea that the questions mainstream media asks are THE WRONG QUESTIONS, and that the issues facing vulnerable groups that really need advocates (e.g. families with medically complex children, people on mechanical ventilation, the population who faces poverty solely/primarily because of their disabling medical conditions) are largely unseen… therefore I keep blogging to fill that gap, to voice the unheard concerns.
One huge umbrella of concerns affecting me and others in the aforementioned unseen groups is the top-down rules and regulations imposed on us. For us, there are the laws, but in terms of the ad-hoc jumble of non-systems that control the services and supports essential to our survival—much less quality of life—there are all the rules and regulations implementing the laws, and rules more local to us coming from home health agencies, state regulators and Medicaid offices, hospital administrators, the list goes on and could cover a number of pages unheard-of except for in encyclopedias, and these rules and regulations govern our lives just as much as the actual laws (if not moreso).
The bureaucratic octopi have tentacles everywhere, and they’re especially consequential in medical bureaucracy where people are at their most vulnerable and any tweak in the rules can change the care, and suddenly life and death is “a matter of policy,” not just about the right care at the right time. That can kill.
Medical Staff Too Often Directed to Do Things for No Discernable Medical Purpose
The actual lived experience with medibureaucracy matters most here, as the data to prove or disprove the impact of diverse millions of rules on untold millions of individual staff and patients doesn’t exist. One especially vexing hospital policy that I run into frequently is the “no foreign ventilators” policy, and it is so frustrating because it’s purely a problem of legalese, not a matter of the appropriate medical treatment…it’s simply “a matter of policy,” outside treatments and prescriptions, and therefore outside of the patient’s right to refuse treatment. I don’t single out one hospital, all hospitals do this. If somehow your hospital is the same company as the DME (Durable Medical Equipment) company providing your home ventilator, there’s probably no issue of hospital non-ownership or fear of an unknown machine, and it’d be fine, but otherwise, the bureaucrats are likely to deem the liability risk of “OMG foreign equipment” worse than the risks of changing you to a hospital vent, even if the opposite is true.
“No foreign ventilators” – cartoon by Nick Dupree. This is a caricature I painted about how it feels when hospital staff try to take your home vent, depicted here as portable lungs, caricature of my own self on the vent, hospital staff depicted as hands on the lungs and a speech bubble: “gonna take you off your vent now mmmkay?”
I would like to see a study of the effect of taking people off their vent in favor of a hospital vent for No Discernable Medical Purpose (NDMP). This could be done as a basic hospital exit survey or a more detailed “qualitative analysis” or something to discern the wider reality: for most of the people affected, is switching vents solely because they’ve switched care/legal jurisdictions (and for NDMP) a traumatic and risky thing, or is switching to a hospital vent more like switching to a new toothbrush for most, no biggie? I definitely fall into the former category, my lungs maintaining a delicate balance against “compressive atelectasis“—my spine smushing into the right middle lung—equilibrium created by high volume ventilation that can quickly deteriorate, lungs partly collapsing and all hell breaking loose when hastily forced on a different form of mechanical ventilation with different (inappropriately low) volume nearly 18 months ago subsequent to an exploratory thingy in the OR. But I don’t know that most permanently vented patients react similarly….
While this is also an issue of patients like me who are so RARE they don’t match any of the hospital protocols or norms of practice, square peg vs. round hole, my focus in this series is the medical bureaucracy’s whole canon of weird rules, potentially affecting anyone, especially insofar as the rules and policies create staff actions that serve No Discernable Medical Purpose (NDMP).
intro post of my Series When Life and Death is “A Matter of Policy”
Note: the respect I have for the staff and bond felt with the other patients is very real, and though these diaries vent frustration and the heat felt at the time, their intent is to shed light not heat and to educate about the real world conditions and actual lived experience of disability in public long-term care hospitals. Please understand that I blame policies not people. I want to give Love to the human beings within the surreal constructs I’ve described.
In addition, you should know that the unit A13 I describe and the hospital Coler-Goldwater itself no longer exist in the forms I encountered, having closed/dramatically shifted at the end-of-2013 without the best transition plan for the people there…
I collected everything here for convenient access for readers who’d like an intimate look “on the inside.”
The Mississippi River watershed a post-aCARPalypse world, the Great Lakes fear Carpmageddon!
Verb: zerg (third-person singular simple presentzergs, present participlezerging, simple past and past participlezerged)
(slang, video games, strategy games) To attack an opponent with a large swarm of units before they have been able to build sufficient defenses.
From the game StarCraft (1998), in which the easily mass-produced Zerg units encourage such a strategy.
the aCARPalypse has come. The verb to zerg, originally coined as “to zerg rush” with the quickly and easily mass-produced Zerg soldiers in the PC strategy game StarCraft, fits perfectly the Asian carp invasion of North America’s freshwater ecosystems. No invasive species in recent memory is invadier than Asian carp—they have zerged up the Mississippi River and its tributaries—swarming everything with unbelievably-fast mass-reproducing carp, crushing biodiversity before our civilization is “able to build sufficient defenses.”
A comparison with a zombie apocalypse, or zompocalypse, is apt too, as everything in an ecosystem the Asian carp touch rapidly become all Asian carp, all the time. This brings to mind the old adage “90% of everything is crap carp,” though it has long been even carpier than that…
Think how overwhelming the zerg rush of carp must be now, 15 years after that study!
“The Midwest Faces Carpmageddon!” painting by Nick Dupree, July 22, 2014
Like most invasive species, and old monster movies, the monster was created (the alien invader carp introduced) via man’s folly and ignorance of potential unintended consequences. Asian carp, being super aggressive bottom-feeders, were imported to om-nom U.S. fish farms clean beginning in the 1970s, but with seasonal flooding chauffeuring fish over barriers, it was only a matter of time before the Asian carp escaped sequestered aquaculture and swarmed the natural freshwater ecosystems nearby!
Bighead and silver carp have been the most problematic of the invasive Asian carp species in the U.S., filtering plankton from the water, robbing native species of food and living space. And because of their bottom-feeding habits, they are difficult to catch with normal angling methods, so obvious counter-measures (giant fish fry) have been ineffective, though fishing efforts continue …the Natural Resources Defense Council has its Eat An Invasive Today! campaign.
It’s an ACARPALYPSE where everything becomes Asian carp, and our system of multiple state jurisdictions, state and federal regulatory agencies and “other agency’s job” inaction vs. the uncomplicated carp zerg rush upstream has been a total failure. Our gov’t has been outwitted by carp. Our system’s inability to mount a defense,
Wrath of Carp™
stop or slow the spread of one-fish-group supremacy (ecosystems becoming carp monocultures or carptocracies) has led to lawsuits by the upstream states and other parties who have LOTS to lose economically if/when the carp wave crashes into their ecosystems and wipes out biodiversity, wrecks local fisheries, implodes fishing economies and the dollars from angler tourism, fishing tournaments and all the fishermen there due to rich supplies of diverse indigenous fish would be gone.
The upstream states, especially the Great Lakes states so dependent on their native fish species, have understandably been pushing hard for the pertinent agencies to build defenses to protect the Lakes, specifically advocating “complete hydrological separation” of the Great Lakes and the Mississippi River basin AKA closing the key link to Lake Michigan, the Chicago Area Waterway System (CAWS).
Michigan, Minnesota, Ohio, Pennsylvania, Wisconsin, and affected indigenous tribes, all bordering the Great Lakes, filed a lawsuit against the U.S. Army Corps of Engineers who are responsible for building defenses and the Metropolitan Water Reclamation District of Greater Chicago who own the CAWS.
July 14, 2014, the Seventh Circuit Court ruled again on the suit against the Corps of Engineers and CAWS operators in what’s being called the Asian carp II case. In this court opinion, the Appeals panel again upheld earlier denials of the Great Lakes states’ plea because of actively ongoing efforts to prevent the carp from getting through the CAWS. But the Court also (finally) ruled on the legal question of “public nuisance” definitively, holding that YES, federal agencies can create a “public nuisance.” I’m not entirely clear on the exact definition and limits of “public nuisance” in its legal sense as used here, but this concept could be an important precedent on which future cases might be built. As someone who was once a plaintiff against the state, I understand that the precedent of the federal gov’t itself causing nuisances and being held liable could be super important, though theoretical here.
The Seventh Circuit also rejected the feds’ rather… unique argument that the nuisance was solely carp “acting of their own accord,” and not their fault. That concept of carp as legal actors brought oddities like “Our decision does not depend on the fact that the Asian carp are advancing upstream of their own volition,” into it, not the sort of phrase that one would normally find in a federal court decision.
Ultimately, the Seventh Circuit Court of Appeals’ opinion in Asian carp II reiterated the previous rulings’ reasoning that the gov’t is doing enough to halt the carp from devastating the Great Lakes, but wholly rejected blaming the carp alone. “It is the defendants’ apparent diligence, rather than their claimed helplessness, that is key to our holding today…” the ruling stated.
For more about Asian carp II, and longer excerpts from the opinion, see Federal government action can be a public nuisance, Seventh Circuit holds - Eugene Volokh’s law blog
Competing interests are definitely the biggest barrier to a carp barrier, as shutting down the CAWS would upset the movement of millions of tons of vital shipments of iron ore, coal, grain and other cargo, totaling more than $1.5 billion a year, and contribute to the loss of thousands, perhaps bajillions of jobs. The Chamber of Commerce weighed in with an amicus brief against closing the CAWS, and of course Chicago and the region doesn’t want it closed.
Narrower interests than this have blocked action. The whole Chicagoland regional economy is a heavy player here with lots of clout.
But on the pro-hydrological separation side, there are five other Great Lakes states + the province of Ontario, and Indian tribes, and they have clout too and probably stand to lose even more economically, bazillions in income and countless jobs of multi-state economies, than the pro-defendant interests do if the carpocalypse wipes out the Great Lakes ecosystems. Economic impact on one or both sides of the dispute is a certainty because of inaction instead of action on the issue of invasive Asian carp in prior decades!
Carp jokes aside, I think that this long-standing dilemma raises deeply important questions about the American system itself and the sclerosis and decay afflicting the system:
when there are competing interests, who decides?
if the Judicial branch can’t force a decision on long-view ecological crises, who can?
what is the proper presidential role in the event of invasive species catastrophes?
why do none of the legislative solutions proposed in Congress pass?
At this late date, the CAWS may be a moot point as carp babies are evidently immune to the electric barriers and the carp have established footholds beyond the canal.
But the challenge of Asian carp and other invasive species, and the larger issue of good environmental stewardship and protecting our communities from toxins, won’t be going away.
Tidbits of Colonial Mobile’s Economic and Legal History Through a 19th century Jewish Lens
The rare book “A History of the Jews of Mobile,” a brief monograph published by Springhill Avenue Temple rabbi Alfred Geiger Moses in 1876 on the Jewish history of my hometown Mobile, AL, and now available online, records some fascinating facts. I’ll get into the super weird history of Mobile Jews serving in the Twelfth Alabama for the CSA in the Civil War in a future post. In this post I’ll go over the most interesting bits of history I was able to glean of the legal and regulatory system early Mobile had in place (when it was considered part of French Louisiana, then British West Florida, then Spanish West Florida).
Mobile was founded by Jean-Baptiste Le Moyne, Sieur de Bienville on his brother Pierre de Iberville’s advice. Both young explorers had sailed from their birthplace, Quebec, in search of advantageous spots to put trading posts to cash in on trade with the Indians. The earliest decades of Mobile’s existence saw sparse settlement and several relocations of the colony due to flooding and swamp epidemics. Everything was in flux, and often, like the Dutch,¹ the French only supplied enough money and people to support the bare necessities for trading. But slowly, the Louisiana colonies eventually added settlers.
New colonial societies can’t function or generate sustainable populations without women (and are totally depressing sausage-fests). Jeanny boy (Bienville) wrote of the situation to his royal backers in France, and in 1704, Mobile was the first port to see “casquette girls” arrive to be the colony’s first official wives. Bienville went on to found New Orleans, Natchez and New Biloxi after Iberville founded Old Biloxi near what is now Ocean Springs, Mississippi. “Consignments” of casquette girls reached Biloxi in 1719, and New Orleans in 1728, and to this day a mythos surrounds the casquette girls as the most virtuous religious women of France, like Virgin Marys founded the old Louisiana families. To claim descent from one of them is to gain auto-nobility in the Louisiana context. Like most lore, the legend that the casquette girls were nuns and Joans of Arc is mostly false. But the dynamic honors founding mothers and mostly omits founding fathers, a notable reversal.
Jews, being strictly banned in the “Code Noir,” weren’t much of a presence in Mobile’s early years. Alfred Geiger Moses noted:
The first two articles of the code read as follows: “Article I: Decrees the expulsion of the Jews from the colony. Article II: Permits the exercise of the Roman Catholic worship only. Every other code of worship is prohibited.” Strange to say, the rest of the code deals with laws regulating the sale and conduct of negro slaves. Gayarre finds the reference to the Jews irrelevant to the general subject-matter of the code. My own explanation of the anti-Jewish laws, which is supported by a good authority, is that they were merely a repetition of the similar legislation current in France at the time of Louis XIV. Drastic as the law appears, it was probably never enforced, because there are no further references to it in Louisiana records. The expulsion of the Jews from America would have been in the sixteenth century an event worthy of the chronicler’s notice.
The Code Noir was developed in France and strictly regulated every corner of economic life that related to the (highly active) slave trade, all activities of the enslaved and freed black population, in enormous detail. And of course a perfunctory ban on all Jews, though Jewish settlement nonetheless accelerated, especially during the subsequent periods of British and Spanish quasi-control.
The main point of controlling Mobile was its lucrative port, so imports and exports were heavily regulated and taxed for the crown’s benefit, and if you didn’t interfere with that imperial extraction process you were relatively free, hence “quasi-control.”
Non-paying the right amount of tribute/taxes, though, could imperil your ability to operate within that colony, and if you were seen as thieving, speculating or profiteering to the detriment of the power people’s loot, you could be imprisoned or death-penaltied.
Rabbi Alfred G. Moses explains:
In the British epoch of Mobile’s colonial history, which extended from 1763 to 1780, an interesting reference to a Jew is citable: Major Robert Farmer, the British commandant of Mobile, was accused, among other charges, of selling flour belonging to the King to New Orleans, or selling or attempting to sell it there by means of “Pallachio, a Jew.” The Major was afterwards acquitted of the charges.
What became at poor Pallachio isn’t known, but it was quite possibly a noir fate.
The concept of “the King’s flour” is really hard to grasp in the 21st century but I think of it as explicitly royalist mercantilism.
Mercantilism meaning “2: an economic system developing during the decay of feudalism to unify and increase the power and especially the monetary wealth of a nation by a strict governmental regulation of the entire national economy usually through policies designed to secure an accumulation of bullion, a favorable balance of trade, the development of agriculture and manufactures, and the establishment of foreign trading monopolies” (see Merriam-Webster dictionary definition)
The “foreign trading monopolies” were the point of colonization, and more purely about royalist monopolies for the French, being less encumbered by entrenched notions of self-sufficient land-ownership meaning individual freedom and citizenship.
Political rants invoking a bygone golden age of “the free market” and no regulation are misinforming the people. “The American Way” is another term for the American System, the tariff-heavy economic plan that predominated in the 19th century, mercantilism in reality. The next time a buffoon is waxing nostalgic about an economic past completely unlike anything we had in North America, remember Pallachio and remember royalist mercantilism.
Part of a new series, “In a Nutshell,” in which I try to explain an idea in 500 words or less.
When the tentacles of regulation clog your toilet
The Commerce Clause of Article I of the U.S. Constitution gives Congress the power “To regulate Commerce with foreign Nations, and among the several States, and with the Indian Tribes,” and that is the basis for so much of our legal and regulatory system, from drug laws and gun control, to water use regulations for toilets.
Things like building the Hoover Dam to bring water and electricity to multiple states in the American Southwest seems a no-brainer for federal action. Air and water pollution too, with its impact on multiple states and countries, seems to me an obvious place for federal intervention, and the number of regs waived during the past two decades—the carte blanche given to mountaintop removal and hydraulic fracking—should concern all Americans. In many areas, there ought to be more and better regulation, and there are reams of highly questionable or unnecessary regulation too.
A classic example of this “regulatory state” gone awry is what happened with toilets in the ’90s. As the first episode of Constitution USA explores, at around the 40:00 mark, the Energy Policy Act was signed into law by George H.W. Bush in 1992, and water use standards were set for toilets in the U.S. at 1.6 gallons. While I’m the first to favor most water conservation and cleanliness measures, I have to acknowledge the unintended consequences of this toilet rule are bad. Does the toilet in your home clog at the slightest provocation? If your home/building was built or had a toilet installed between 1993-2000, this rule is probably why. Toilet manufacturers immediately adhered to less water per flush, but that meant low-flow toilets. It was years before toilet design and flush technology caught up, and until then, toilets failed with solid material of even modest size. This legacy of toilet failure is still keenly felt in apartment buildings erected between ’93 and the coming of the 21st century.
The blogosphere had a field day poking fun at Rand Paul for mentioning the non-working toilets at a Senate committee hearing on energy regulations, but dude-bro has a point when he said “the toilets in my house don’t work and I blame you…” (full text statement, video evidence)
Though Paul’s rant kind of reminds me of that Seinfeld episode when Kramer and Newman hated the new low-flow shower heads installed due to related ’90s water regs, so they got crazy high-flow shower heads for circus elephants on the Yugoslavian black market (Seinfeld video), Randy nonetheless has a point. We need technology that works in our homes, and eventually you get innovation and mega uber toilets invented like the Sydney Smart because of the regs, but meanwhile EPIC FAIL occurs. I think a grace period or something to ease the transition is warranted.
I’d make a much broader point: the authority for all this regulation is the Commerce Clause, and all the case law built atop it, but libertarian-ish right-wingers like Rand Paul blame that underlying system… the underpinning system is not the problem as much as the corruption of the guys who write the rules (Congress and/or the federal agencies). That corruption is where things really go wrong. Removing corporate sponsors and corruption from our gov’t is desperately needed, and that is your answer. The wholesale dismantling of the regulatory system is not going to happen.
But criticism of the regulatory state is certainly understandable. What kind of system regulates toilets so rigidly they can’t manage waste of any rigidity, but can’t regulate the hydraulic fracturing industry’s radioactive waste? a corrupt mess of a system that has been affected by “regulatory capture” in a piecemeal fashion, with different but increasing-in-number tentacles of the regulatory octopus captured over the years.
Ultimately, even if the Congress ends up frying a lot of the regulatory octopus’ tentacles, our Commerce Clause is going to mean that federal regulation of things like toilets continues, since toilets are sold across numerous state jurisdictions, and also affect water use regionally and nationally. No toilet exists in a self-contained pocket universe, y’know? But our regulatory state as-is is too messed up, the contradictions too great, and the trust of the rising generation too low-flow for it to be sustainable. Change will have to come for our regulatory octopi, too.
Dr. Jen Gunter
OB/GYN Jen Gunter wields the lasso of truth, reining in issues of women’s health, reproductive care and the insanities of American health care.
Health Care Renewal
Dr. Roy Poses blogs fearlessly against the corruption and lies in the halls of power of the medical industry.
Under the tagline “Thoughts from the Front Line of Physician Leadership,” Dr. Hein runs down the true issues in U.S. health care beyond the headlines and press releases.
Not Running a Hospital
Paul Levy deserves not only an award for blog activism against “preventable harm”-ing patients, but an award for blog journalism, as he expertly collects the facts on what health care corps are really doing…