Tag: hospitals in America

Diamonds in the Rough ‘n Tumble Webternets: What Med-people of Conscience Are Blogging (Part 4/4)

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…

Cartoon description: Just like the iconic photograph of five helmeted WW2 veterans working together to plant an American flag in a muddy clearing on Iwo Jima, but in this iteration, the five famous GIs struggle to foist forward a tower of VA paperwork instead.
“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.

See the entire blog post: The VA, Laws on Healthcare and the Dangerous Business of Replacing Front-Line Thinking with Corporate Mandates

Dr. Roy Poses, blogging fearlessly at Health Care Renewal, takes on the issue of top-down mandates from corporate managers with uncommon boldness, questioning the ability of the MBA managerial class to understand medical care long-haul at all, even pondering the role corporate psychopaths helming our big health care conglomerates might be playing in the present state of affairs. I applaud you, Dr. Poses! Your candor and insight (and pure gutsiness) is desperately needed. PLEASE keep bloggering on – KBO!

Dr. Michael Hein (linked to by Dr. Munk) sheds light on the 90% of the iceberg underneath the VA scandal we’re not seeing or addressing: the crisis of woefully scarce primary care.  Most civilians wait much longer than 14 days for an initial primary care appointment; 30 days if you’re lucky, up to 6-9 months depending on which part of the country you’re in.
Dr. Hein also linked to the always insightful OB/GYN Dr. Jen Gunter reining in “metrics madness” at the VA and elsewhere with her lasso of truth.

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 expansionboost 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 Hospital led 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.

Code is law.

See the whole post here: “Code is law.” Literally. | naked capitalism

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.



Part 1: the introduction/weird ventilator rule

Part 2: Paramedics, the VA and obedience gone wrong

Part 3: The Milgram experiment, the tendency to obey and medical contexts


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“…

Human Nature, the Tendency to OBEY, Bad Incentives, and the U.S. Medical System (Part 3/4)

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.

Dr. Milgram, a middle-aged white professor with poofy hair, demonstrating social contexts, with shaving cream on his face
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
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.”

Milgram concluded:

“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.”

Recommended resource: TED Talk on the Milgram experiment and the Stanford Prison Experiment

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.

I also write about disobeying the power structure back in June, see: Law and Order: When Is It Wrong to Follow The Law?



3/4 Series When Life and Death is “A Matter of Policy”

In Part 4, activism and rays of hope from medical bloggers

go back to Part 2, Paramedics, the VA, and when following policy goes horribly wrong

or go back to Part 1: introduction to the series/weird ventilator rule



Paramedics, the VA, and Eric Garner: When Deference to Authority Goes Horribly Wrong (Part 2/4)

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.

Full story here: Veteran dies waiting for ambulance in VA hospital

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.

In the initial local TV News reports, the implicated hospital said simply “we followed policy.”

“Just following orders.”

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”

In Part 3, the Milgram experiment, James Madison, and hospital ethics
Part 4: activism and rays of hope from medical bloggers

or go back to Part 1: introduction to the series/weird ventilator rule

Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)

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?"
“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”

In Part 2, Paramedics, the VA, and doing things for NDMP
Part 3: the Milgram experiment and hospital ethics
Part 4: activism and rays of hope from medical bloggers

More NYC Hospitals Lost To Economic Crisis

from the NY Daily News: graffiti on the walls boarding up St. Johns Queens Hospital
from the NY Daily News: graffiti on the walls boarding up St. John's Hospital

New York City’s hospitals, already strained and overcrowded, are experiencing a spree of closings, felled by the economic crisis. St. John’s Queens Hospital and Mary Immaculate Hospital have gone bankrupt and boarded up the entrances.  This leaves Queens-dwellers with few options, and those few options in an awful overcrowding situation.

“It’s a real failure of government to set priorities and manage them properly,” Gioia said. “They throw up their hands when the money runs out and say, ‘What can we do?’ That’s not good enough.”

Mayor Bloomberg called the closures “sad” and said the city has to do more with less in these tough economic times.

“Having said that, there is no reason for us to … walk away from our basic functions of government,” he said, adding that the Fire Department will dispatch more ambulances in Queens and for other hospitals to fill the void.

Carlos Quiles, a nurse who lost his job at St. John’s, said the next best option for care in Queens is Elmhurst Hospital Center, which is already filled to capacity.

“I can’t understand the wisdom behind closing the hospitals,” he said. “The politicians clearly have no understanding of the ramifications.”

Source: NY Daily News: Councilman Eric Gioia rips hospital closings in Queens

That nurse is right, the politicians don’t get it. They’re not envisioning the overcrowding and wait times this will cause. I’ve never heard of a hospital here that isn’t packed, we’re already seeing ER wait times in excess of 8 hours in some of the city-run hospitals, and you suddenly remove nearly a thousand beds from the equation?? That’s really not gonna be pretty.

In Manhattan, Cabrini Medical Center had to close. There’s been lots of talk about that here in the hospital I live in, because we’ve taken in some of Cabrini’s refugee respiratory therapists. The gossip now is about which hospital is next in line at the guillotine (some say Maimonides Hospital in Brooklyn won’t make it) and whether any of the doctors and nurses in my home hospital will be safe. “I don’t know if we’re safe,” my doctor said, sighing.


Saving Emilio

Should the state be allowed to pull the plug on your family without your consent?

This is a scary question that’s getting more and more attention lately, as states and hospital corporations are increasingly looking to cut costs and unplug people they deem “futile.”

It’s downright Nazi-istic, and we are called to fight this every step of the way.

Texas is a state that has been particularly loathsome in this area. They have a law (signed by allegedly “pro-life” governor of Texas, George W. Bush) called the “Futile Care Law,” which takes the individual liberty away from the family, and allows hospital corporations to unplug you (against the wishes of the family) if they deem you “futile.” This is way too much power in the hands of corporations, and it strips life-and-death decisions from the family in order to kill people and free up hospital resources.

In an unprecedented perversion of American tradition, Texas is saying “Take my liberty, and give me death!”

Monday I signed an affidavit affirming the dignity of those on life support and had it notarized and faxed. That’s where I’ve been….

Here is the press release on this case:

March 20, 2007

Contacts: Diane Coleman & Stephen Drake
(708)209-1500, exts. 11 & 29; 708-420-0539 (cell)
Bob Kafka
512-431-4085 (cell)

National Disability Group Supports Efforts to Save Emilio Gonzalez
Activist Nick Dupree provides affidavit about the dignity of life as a ventilator user

Not Dead Yet, a national disability rights group, is strongly supporting efforts to save the life of Emilio Gonzales, a seriously ill infant whose life may end on Friday, March 20 under the infamous Texas “futility law.”

The Texas chapter of Not Dead Yet has been part of the effort to overturn the current draconian “futility” statute in Texas – an effort that has been effectively stonewalled by the special interests of medical facilities, medical professionals and bioethicists.

Unfortunately, reversing the latest implementation of this statute can’t wait for a change in the law. Emilio Gonzales, who is 16 months old, will die next week when the Children’s Hospital of Austin removes him from a ventilator.

Attorney Jerri Ward, representing Emilio’s mother Catarina Gonzales, is moving on multiple legal fronts to prevent the implementation of the impending death sentence. Today, she filed for a Temporary Restraining Order against the hospital to prevent the planned removal of Emilio’s
ventilator. She has also filed a complaint with the U.S. Office of Civil Rights and has claimed that the hospital’s actions represent unlawful discrimination under the Americans with Disabilities Act.

According to news reports, Emilio’s use of a ventilator lacks “dignity” and merely “prolongs death,” according to the ethics committee at Children’s Hospital.

A powerful affidavit submitted by disability activist Nick Dupree contests those characterizations of life on a ventilator. 26-year-old Dupree has been on a ventilator since he was 13 years old.

“I do not consider living with a ventilator a burden that makes my life unworthy of being lived. I do not, and have never, considered it an assault on my human dignity and person,” says Dupree in his affidavit. Dupree also writes about his brother Jamie. Doctors wanted to “give up” on
Jamie when he was 12 months old and intubated. Due to his mother’s insistence, Jamie was given a tracheostomy and sent home on a ventilator. Jamie is 22 years old now.

It’s a good thing there were no “futility laws” enabling doctors to overrule Jamie’s mother when he was 12 months old.

Not Dead Yet opposes futility laws as an unconstitutional denial of due process, purportedly authorizing state sponsored medical killing. “We need to get rid of the futility law threatening the life of Emilio Gonzales and others like him in Texas,” said Diane Coleman, president of the
group. “Any theory that the ethics committee procedure satisfies due process requirements is ludicrous.”


UPDATE: the hospital has granted a stay of execution until April 10.
Read more here.

That we fight for those on the margins is incredibly important, more important than I can adequately put into words.


Hospitals Are Very Dangerous Places

As I wrote in my last post, hospitals are dangerous. Doctors often don’t believe the patient, don’t listen and screw up. There are nearly unlimited ways hospitals can make mistakes; I even can’t count how many times I’ve been harmed. You can’t just sit back, relax and say “oh, I’m sure they know what they’re doing, they’ll take care of everything.” Even with the best staff (unlikely) there are many opportunities to go wrong. To ensure your survival, you have to be very alert, aggressively on top of everything they’re doing and advocate until you get what you need. You should always have a loved one with you to help advocate and, if necessary, throw themselves in front of you to stop the most egregious errors. For each medical condition you have, your risk is multiplied. In very complex cases (like me) you have to assume they’ll mess up and adjust for that and insist they get it right. A study found that the ornery, demanding patients that the nurses hate live longer than nice, “compliant” patients; remember this.

Check out this story on CBS News about reducing medical errors. Dr. Donald Berwick runs the Institute for Healthcare Improvement, and for two years he’s headed a new campaign to stop 100,000 unnecessary deaths by getting hospitals to adopt standard operating procedures. It wouldn’t let me embed the video, but there is a stunning interview video here wherein he says:

“Hospitals are very dangerous places. I don’t know how to explain this to the public in a way that doesn’t create too much fear. But they need to be realistic and the technologies that help you can also hurt you — and they do it every single day.”
Dr. Donald Berwick

Stay aggressive. Advocate. Survive.


This Is The Digital Soul of Nick Dupree

Fear, Esophagastroduodenoscopy and The Ultimate Quarterlife Crisis

What’s my world like lately? I hesitate to even go there, because it inevitably veers into the dark side, where I (and most people) don’t want to go. But I think occasionally I should throw back the curtain and disinfect the area with some sunlight, let people know what I’m up to, and also try to forge some semblance of an internal narrative that would give me some illusion of control, and maybe it’ll be something I can build on. Recent events (turning 25, a hospital trip) also make now a good place to stop and take stock.

Few people really understand themselves, much less other people. Even fewer people understand people on ventilators; most people largely avoid what they’ve never dealt with first-hand, gravitating toward the familiar at the expense of the unfamiliar. A ventilator shouldn’t be as mystified as it is; as I pointed out earlier, it is just a glorified electric bellows. But perhaps there is also a natural aversion to being around someone who lacks what is essential to being alive: breathing. In a sense, as poet Mark O’Brien pointed out, we are the undead. I am much like William Wordsworth wrote when he witnessed the first form of mechanical ventilation, the iron lung; I’m “a traveler betwixt life and death.”

And now I see with eye serene
The very pulse of the machine;
A being breathing thoughtful breath;
A traveler betwixt life and death.
-William Wordsworth

This status can open up whole new layers of vision, a new way of life, unique experiences, but such a thin foothold in life is also very challenging. I rely on a ventilator for each breath 24/7. With each breath, the tubes move up and down, up and down. That means an inherent danger of a tube popping off, you have no air whatsoever, and you helplessly watch yourself suffocate to death. Tubes pop off every week, but I’m always saved by someone being in the house. I can hear people typing now “omg you take on such risk, you’re a hero.” No. Please. This doesn’t mean I’m some hero engaged in some grand, daily struggle just because I’m incredibly vulnerable. Given the options, 1) death or 2) rely on a vent, I naturally chose to survive, and I’m very grateful I have the vent and survive. But relying on a ventilator also means that even on a good day, life is tenuous, like this:

A lot of the time I forget the tubes are there, just like someone who wears glasses or big earrings can forget they are there, but the knowledge that I can pop off and asphyxiate, that my friend died that way, that I need someone who can help within earshot at all times, this is with me all the time, just as a diabetic person always has the knowledge they’ll need insulin in the back of their mind.

There’s a certain fear inherent.in my life. I have the visceral, animal desire of a weaker animal who wants to be protected from predators, and there are real dangers lurking: from accidents and incompetence to the cold indifference of a system run by spreadsheets and bean-counters. On the night of the 6th, I got some chicken lodged in my esophagus. This is simply a hazard of having a neck bent by scoliosis, but it had never been this bad before. No matter what we tried we couldn’t get it un-stuck. Friday we had to break down and take me to the ER; by ambulance, because our van hasn’t worked lately.

So we get there, and the attending physician is your stereotypical, arrogant, uncaring bastard (to put it mildly) and he doesn’t believe us that there’s chicken lodged in my esophagus. Not big news here, I’ve dealt with situations far worse; this crap is almost boring and mundane at this point. He says I’m breathing fine, so there’s no problem. This guy barely wanted to listen to Mom, much less ever stop long enough to strain to hear my increasingly weak speech…. He X-Rays me, but chicken doesn’t show up on an X-Ray, there’s no contrast, Einstein. He says it could just be an abrasion. Yeah, I’ve had that before, and this ain’t that. We say, “hey, we’ve got the disgusting stench of decaying chicken over here.” “That doesn’t mean anything to me,” he says. I guess he was just going to send us home. I wonder how many people this doofus has killed? I protested. Mom insisted. Finally we got a GI consult and the GI doctor was great. He put me to sleep, did what they said is called an Esophagastroduodenoscopy (he put a scope down my throat)

What a video endoscope looks like

and he pulled the chicken out. It was so wedged, pulling it made it stick worse. But victory was finally achieved. I spent the weekend recovering. Now I’m back to the status quo—-YAY….

This incident is one of countless times that having Mom there has ensured my survival. It would indeed be hard to stay alive as a severely disabled person without someone there who is inextricably bonded to you, ready to stick up for you when the inevitable challenges occur.

Yet since I was 19, the visceral, inarguable longing to be protected, has clashed with the visceral, inarguable, evolutionary desire to break away from the family and establish an independent, vibrant life, where maybe I can begin my own. This urge can never be extinguished in me, no matter how severely humbled and crushed physically I am. But going off on one’s own is, by definition, fraught with danger and inevitable errors, when I have no margin for error–if I’m not protected, I die, and die fast.

So, year after year, this hole in my soul has festered. What happens when the goal you had for 2003 is stifled over and over, and then you realize it is 2005? Now it is 2007. Layers of despair and cynicism settle in. I am so tired. I turned 25 last month. This is the ultimate “quarterlife crisis.”

I feel like a caged animal a lot of the time. I’m stuck, with nurses who are strictly medical, so there’s not much I can do. I spend 99% of my life silent. Sleep, get online, eat, sleep. Lather, rinse, repeat. How am I doing? Same old, same old.

In the ER, once my nurse stepped out, I told Mom, “please, put me in a place where I can share my soul with more people.”

I’m a person who has so much to share, so much insight on so many things on so many levels, and that all those thoughts and feelings are trapped within for lack of an outlet is excruciating. If death is the soul leaving the body, then maybe I’ve felt a form of it, my soul migrating to the online world where it (thank G-d) can find expression. This is the digital soul of Nick Dupree.

That I’m able to blog and express myself and my ideas is so immensely important to me. To all my readers, thank you so much. My supporters keep me going.

I hope for redemption, resurrection. It is still possible. I hope and pray 2007 is the year we finally relocate to a better city, better situation. I want so much. I am a hooked fish, and most misunderstand.

       When a trout rising to a fly gets hooked and finds himself unable to swim about freely, he begins a fight   which results in struggles and splashes and sometimes    an escape.... In the same way, the human struggles ...    with the hooks that catch him.  Sometime he masters his   difficulties; sometimes they are too much for him.  The   struggles are all that the world sees, and it usually    misunderstands them.  It is hard for a free fish to    understand what is happening to a hooked one.

         Karl A. Menninger (b.1893)                            "The Human Mind"

— quoted at the beginning of Chaim Potok’s The Chosen

Keep tuning in to see what is happening.


“A traveler betwixt life and death”