alex and patient rights

in healthcare, pain is subjective. even if you don’t think the patient is in pain, it’s not up to you. that’s the meaning of subjective and all ethical treatment of patients includes assessment and treatment of pain...period. unless you are autistic and nonverbal. then, by all means your pain is impossible to assess and doesn’t need to be treated. that’s just what happened to alex spourdalakis for 22 consecutive days as he lay on an er cart or in a bed in four point locked restraints (a whole notha story). so how does this happen? if you are what is better known in the medical community as a “frequent flyer” and you come into the hospital and demand that your pain is medicated, you get it. if your pain is assessed and you report it as 10 out of 10 while you talk on the phone, paint your nails and watch tv from your hospital bed...guess what...you get medicated. if that medication allows you enough pain relief to leave your hospital room, walk down to the lobby and outside to smoke a cigarette...or whatever...guess what? ethically, realistically, legally, and as a matter of protocol...your pain is assessed and medicated. now...if you’re a sick, nonverbal, autistic child covered in a rash, with abdominal distension, vomiting, and you are banging your head and ripping at your clothes...by all means there is no way those same healthcare providers can be expected to assess your pain.

here are some of the patients whose pain can be assessed with standardized pain assessment tools specially designed just for them:

newborn infants (they can’t talk either, sometimes they are on ventilators)

patients in a coma (can’t talk, most have a breathing tube down their trachea)

patients on hospice and so close to death that they are unresponsive (we can still assess their pain but no, generally, they can’t talk)

patients who suffer from burns (we can just go ahead and assume they are in pain)

patients with brain injuries (sometimes can talk, lots of times are confused)

patients that had some oral maxillofacial surgery (mostly, can’t talk, especially if their jaw is wired shut)

i mean, i can go on for days. there is an endless amount of examples of patients who have limited or altered cognitive, communicative and physical ability to express their pain and yet we, as healthcare providers, are not exempt from assessing their pain and treating it. this is why pain is the fifth vital sign. this is why there are all different assessment tools to utilize based on the patient population and their ability or inability to express pain.

why then, would this child, clearly having some type of issue, be denied the same basic right as all other patients based solely on his ability or inability to verbally express his pain? that inability to verbally express his pain directly related to his disability of autism makes this lack of assessment and treatment a discrimination against a disabled individual. and furthermore, the widespread practice across this nation in all healthcare settings, including the pediatricians’ offices, to not assess these individuals’ pain utilizing one of the many standardized assessment tools available to them and recommended for use, is nothing more than discrimination and a violation of the patient rights and civil rights of each and every single individual, each and every occurrence.  in addition to being unethical and guilty of malpractice, each healthcare provider that does not utilize an appropriate pain assessment tool to determine these kids’ level of pain, negates the need to utilize this symptom...pain...to determine the next diagnostic step. avoiding the subsequent investigation of that pain, findings, and treatment plan based on that symptom kind of eliminates the need for... ya know...the basic practice of medicine. deviation from this method used to determine a patient’s treatment—--patient presents with symptom, physical assessment performed, diagnostic tests performed as indicated, diagnosis is made, treatment is determined, follow up to see if problem is resolved or resolving—--is called malpractice. because anyone can just guess. so if these doctors and other practitioners want us not to think they are just idiots then they must display some type of behavior that indicates that they did attend medical school and a residency program and they do have some form of specialized training. because we can guess all by ourselves.  this may sound like a lot of jibber jabber to a HCPBBP (health care provider blinded by pharma) so here are  two scenarios that illuminate my point for those that may or may not have lingered around after reading the last post.

hypothetical patient one

patient enters the hospital through the emergency room with a diagnosis of abdominal pain. he was found down in an alley, obviously homeless, covered in bloody stool. incoherent, he is unable to communicate his needs including his pain. not sure how his diagnosis for pain was determined but thinking it was the most appropriate coding arrived at by the er physician?  i mean, the guy had bloody stool we can assume he was having some abdominal pain, right? so he is cleaned up, medicated, and scoped by gi (after their consult of course) and social work is gonna see him for help with a shelter and what not. he’s got a million other health problems that are addressed while he’s hospitalized, because he’s probably not gonna be following up with his primary physician, seeing how he’s homeless and all. easy peasy lemon squeezy.

hypothetical patient two

fourteen year old severely autistic, nonverbal child is brought in to the emergency room by his parent specifically for help with his gastrointestinal symptoms of abdominal distension, vomiting, decreased food intake, and increased aggression and agitation secondary to pain. these behaviors are new onset and he has not had any investigation of his gi system as of yet. diagnosis is made of aggression, not abdominal pain, because i’m sure that’s the most appropriate coding arrived at by the er physician? the child is kept in locked restraints for days on end without appropriate assessment or any assessment of or medication for pain at all. that’s okay..right?

even though all research says this……

“if the gastrointestinal disorder is recognized and

medical treatment is effective, the problem

behaviours may diminish. when abdominal pain or

discomfort is a setting event, psychotropic

medications are likely to be ineffective and may

even aggravate the problem if they have adverse

gastrointestinal effects.”

consensus report, american association of pediatrics -

buie et al., 2010

 

 and the aap says this…..

the most common gi diagnoses identified in children with asds include constipation, diarrhea, and gastroesophageal reflux, and these are usually treated in a standard manner.^9,10 children with asds may not present with the typical symptoms of a gi disorder, however, and an alteration of their baseline behavior may be the only indicator of its existence. there is a serious dearth of adequately designed studies on treatments for documented gi disorders and their outcomes, including behavioral changes, in children with asds.

http://pediatrics.aappublications.org/content/130/supplement_2/s160.full

 

and this…..

individuals with asds who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without asds who have the same symptoms or signs. evidence-based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (gerd) should be developed.

individuals with asds deserve the same thorough diagnostic workup for gastrointestinal symptoms as should occur for other patients. there is no evidence for pathogenic mechanisms specific to asds that warrant a distinct diagnostic approach. guidelines for the evaluation of common gastrointestinal symptoms have been developed by medical societies, medical centers, and managed care practices.^9–12 few, if any, published documents have addressed modifications in the diagnostic evaluation on the basis of the needs of persons with disabilities such as impaired language. an evidence base is needed to guide evaluation and therapy, but until appropriate studies are conducted, guidelines must be based on expert opinion.

http://pediatrics.aappublications.org/content/125/supplement_1/s1.full

 

and this!!!!!

 

table 2

behaviors that may be markers of abdominal pain or discomfort in individuals with asds

vocal behaviors	motor behaviors	changes in overall state
frequent clearing of throat, swallowing, tics, etc	facial grimacing	sleep disturbances: difficulty getting to sleep, difficulty staying asleep
screaming	gritting teeth	increased irritability (exaggerated responses to stimulation)
sobbing “for no      reason at all”	wincing	noncompliance with demands that typically elicit an appropriate response (oppositional behavior)
sighing, whining	constant eating/drinking/swallowing (“grazing” behavior)
moaning, groaning	mouthing behaviors: chewing on clothes (shirt sleeve cuff, neck of shirt, etc), pica
delayed echolalia that includes reference to pain or stomach (eg, child says, “does your tummy hurt?” echoing what mother may have said to child in the past)	application of pressure to abdomen: leaning abdomen against or over furniture or kitchen sink, pressing hands into abdomen, rubbing abdomen
direct verbalizations (eg, child says “tummy hurts” or says “ouch,” “ow,” “hurts,” or “bad” while pointing to abdomen)	tapping behavior: finger tapping on throat
	any unusual posturing, which may appear as individual postures or in various combinations: jaw thrust, neck torsion, arching of back, odd arm positioning, rotational distortions of torso/trunk, sensitivity to being touched in abdominal area/flinching
	agitation: pacing, jumping up and down
	unexplained increase in repetitive behaviors
	self-injurious behaviors: biting, hits/slaps face, head-banging, unexplained increase in self-injury.
	aggression: onset of, or increase in, aggressive behavior

     

and the joint commission says this…..

you have a right to have your pain addressed

you have the right to care that is free from discrimination.

this means you should not be treated differently

because of:

age
race
ethnicity
religion
culture
language
physical or mental disability
socioeconomic status
sex
sexual orientation
gender identity or expression

http://www.jointcommission.org/assets/1/6/know_your_rights_brochure.pdf

 

but..

these kids are just psych. so we “snow him” with psych meds and don’t investigate his pain or gi symptoms and lock him away as soon as we possibly can. oh, wadda mean? no psych place will take him...well wtf? why not? because he has too many medical problems? well i thought we cleared him medically? let’s just let the kid sit there, locked down, in pain while we argue about it for 25 or so days. in the end we’ll dump him out because insurance isn’t gonna pay any more days and we can’t find anywhere to take him. even though it’s our job to ensure a safe discharge, and we didn’t, and his mom killed him nine days later, don’t worry because no press outlets will say our name anyway and the mom is in jail so nobody will be coming after us, let alone some other crazy ass autism mom who has over 700 emails about this kid, including internal hospital emails stating we never intended to treat this child to begin with....i digress

now, i don’t want any haters saying i don’t think the homeless guy should get treated. in fact, i have bathed, fed, and medicated more homeless guys than all of you added together so shut that shit right up. what i am saying, is do you think our kids could receive the same care as everyone else? just that, nothing more, nothing less, just the same?

i think so. but i don’t think it’s gonna happen until it becomes logistically, financially and legally painful for some HCPBBP not to do it. and that’s where we come in. enter left.....a couple thousand autism parents that carve out 15 minutes a day reading time to focus on their legal rights related to health care and what to do about them when they are violated.

let’s just go there together. ready? close your eyes and take a deep breath.

we are in the emergency room together. your kid has a high fever and he is posturing like no tomorrow, covered in a rash, he just puked all over the car on the way...ya know...a typical saturday. what, you say?!? you don’t have an ipad with an app for my child to use to communicate with you? you don’t have any pecs? you can’t provide him a means to communicate in the way he is accustomed to?  ya know...like the federal mandate of the americans with disabilities act says you should? ya know...like the joint commission says he has a right to?! like.......o m geeee , well how are you gonna assess his pain? what standardized pain assessment tool are you gonna use? you’re not following the aap guidelines which are considered standard of practice? you’re gonna deviate from standard of practice and open yourself up to that whole legal liability...hell...what if my kid has a small bowel obstruction that perforates? what if he’s having an appendicitis? can you tell he’s not just by looking at him? wow...do you have x-ray vision?

tell you what, lemme give you the name of my attorney and we’ll just wait here while you find someone who knows what the fuck they’re doing

ahhhhhhhh.....come on back, now

doesn’t that feel better?

(long sip of wine)

here’s a few phrases i want to leave you with as you ponder the possibilities. just think about it. all of us. together.

1.5 million kids with autism

patient rights

civil rights

health care discrimination

class action

insurance companies

malpractice claims

insurance premiums

failure to diagnose

failure to treat

exacerbation of underlying condition

peace out

rubolino

dear doctor

dear dr. gerberding,

when you accepted my friendship on facebook, i felt a sense of excitement. an opportunity to tell you how i feel. while i’m fully aware that my post will stay for only a short time before you rip it off your page...still... a long awaited opportunity to share with you my inner feelings.
i promise...i promise you that i will never go away. we know vaccines can and do kill kids. they are also responsible for injuring and making ill, thousands and thousands of children. you like to call it autism. we know you knew. you had a responsibility to the children of this country and you sold them out...for greed...for money...and for yourself. while you stepped over their dead and dying bodies to climb the ladder, their parents, their families, their siblings sat by and watched them suffer.

while they had seizures that seemed to go on for far too long, while their momma stay next to them, holding them, praying over them that they will start to breathe again...you were out to dinner with some other slime ball. while their daddy was up scrubbing the acid, liquid stool out of the carpet at 3 a.m. while their momma washed their fire red rash and they suffered in pain...you slept peacefully in your bed.  while another family broken by stress, watching their child suffer, devastated by the financial strain of being locked out of the healthcare system worked their way through this unbelievable travesty...you moved on. movin’ on up!!

and let’s not forget,the Poling case. let’s review……shall we?

JULIE GERBERDING, DR., CDC DIRECTOR: "Well, you know, I don't have all the facts because I still haven't been able to review the case files myself. But my understanding is that the child has a -- what we think is a rare mitochondrial disorder. And children that have this disease, anything that stresses them creates a situation where their cells just can't make enough energy to keep their brains functioning normally. Now, we all know that vaccines can occasionally cause fevers in kids. So if a child was immunized, got a fever, had other complications from the vaccines. And if you're predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism."

http://transcripts.cnn.com/TRANSCRIPTS/0803/29/hcsg.01.html

now……most people would look at this and not like what you said. i, however, can appreciate a few items in this short paragraph but still have a few questions. one……why didn’t you review the case files? you had enough time and this issue was really big so...what up gurl? fyi...mitochondrial disorders are not rare as we all know so why say something that is such a stretch of the truth when trying to cover your slime tracks? if you need some references, ask the AAP or review the latest IACC transcripts….or better yet, check out the Kennedy Krieger paper that states in the first line, “Our clinical experience at Kennedy Krieger Institute over the last 15 years has shown that a deficiency of mitochondrial complex I is a common cause of regressive autism. ” but i know you’re not interested in truths, or facts or real research.  here’s another question….when you say “what we think is a rare mitochondrial disorder”….who is we? are you grouping yourself in with Hannah’s parents? or her doctors? or the DOJ? not sure what you meant by that. and thanks for the super simple breakdown of mito dysfunction for all us uneducated/undereducated parents out here….but try to be accurate next time….mito doesn’t affect just the brain. then there’s my favorite, how you elude to the vaccine causing a fever and the fever causing a problem. should we then believe that certainly while a fever could cause problems the vaccine itself is super duper safe and could never cause a problem? the next phrase is where you redeem yourself…….”it can certainly set off some damage”…..as in brain damage. then the infamous “symptoms characteristic of autism” line that rang around the world. let’s see…..the kennedy krieger paper doesn’t say characteristics, it says just plain autism, so i think you need new reading glasses. there are many forms of brain damage, some caused by vaccines, some caused by a repeated exposure to greedy, evil thoughts of climbing the corrupt ladder of death and destruction. you, i would guess, have the second kind. and it’s skewing your judgment if you think that you are going to be exempt from judgment. i was thinking about what you could possibly do to kind of undo all the damage you have done and…….quite frankly i couldn’t come up with anything other than this.

learn these words……i know you won’t be able to understand them but just memorize them….you will need them later. just my words of advice….from one “friend” to another…..

A Psalm of David
The LORD is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil: for thou art with me;
Thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies:
Thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life:
And I will dwell in the house of the LORD for ever.

oh,and i forgot...you should beg for forgiveness

every....fucking....day

your fb friend

rubolino

that’s J-I-L-L   R-U-B-O-L-I-N-O

iacc......ick

maiden voyage....our trip to give a whopping three minutes of public comment at this past iacc meeting. as usual, we mistakenly thought we should be nervous, until we got there. then we quickly realized, pretty much nothing to be nervous about except maybe the possibility of jumping across the table and throat punching someone until her airway collapsed. alas, we are not murderers like some people in the room. pathetic was the response to the public comments, some of them pleading for help. I think the fabulous Kelly Peters sums it up with this fb post:

Let's objectively look at objectives. Let's plan a meeting to plan the plan about the plans. Let's regroup and recap and examine the reviewed data in four months. Let's schedule a committee review about the separate meeting of the committee subgroups. Let's re-evaluate the same shit we have blathered about for the past few years and did nothing about.....

Let's gather again and blow some more smoke up America’s ass....

two rays of light...Wendy Fournier and Lyn Redwood...thank you for making us feel like, for a second, we weren’t sitting in the third ring of hell by injecting some much needed reality into the day...and for your tireless work. i couldn’t move forward without recognizing the unbelievable display of restraint you both demonstrate and, in retrospect, the realization that all along you have endured this gross display negligence while keeping your commitment to the truth....and to our children....who are suffering. all i can offer is my deepest thanks. and i’m sure there are some warriors out there that are rolling their eyes right now mumbling the proverbial ‘this is just a normal tuesday for us’ and looking down at our disgust for the status quo with a judging ‘don’t you think we would have fixed this by now!?’ attitude. oh well. if you wanna be a hater, stand in line bitches. if I lose any sleep over your opinion of me, i’ll be sure to send you a frickin memo. until then, realize that the travesty of justice is big enough for all of us. that whole posturing within our community bullshit is just that, bullshit. spending my life working with physicians whose egos were bigger than their frontal lobes enables me to see past those who talk the talk but can’t walk the walk. look around...at 1.5 million kids with autism, there’s enough more important shit to talk about. hence, i digress.

what can i say about Dr. Buie or Dr. Frye. please, for the love of God, watch their presentations. for your own sake and the sake of your children. they pretty much laid it out for everyone. our kids are sick and they require medical treatment.if they get treated, they can and do get better. not sure anyone was listening as they kept leaning over whispering to each other about time, and how far behind the schedule was. we sat right behind insel not on purpose but it turned out to be enlightening. especially when he would lean over and make little comments like “she’s smart” or “makes sense” like he was an actor in a pr campaign and it was the first time he’s ever heard of this shit.  i thought Jeanna was gonna unleash her rugby playing self on his ass at any moment but thankfully she kept it to a minimum and we spent the time texting each other how much we hated them and writing notes on each other’s notepads.

“which one is she?”

“next to devil?”

“she’s a crack smoker”

my favorite…

“eat shit..AS..B..were just smirking”

the chic that talked about ect and catatonia....please return to your hole in the universe. while i was forced to listen to your disgusting presentation that took up way too much valuable time, we could have been talking about children who suffer every minute of their lives in pain and what to do about it. when you were asked a question and you went way over  your time limit with your answer insisting on explaining in even greater detail how important and pertinent your information was and why you used pictures of children from a hundred years ago in your power point, i wanted to stab myself in the iris to relieve the pain of listening to someone as removed from reality as yourself. some kids just don’t want to eat because they don’t want to and there’s nothing wrong with their gastrointestinal systems? electroconvulsive therapy is not as barbaric as it used to be? are you aware you are sitting next to Dr. Frye? the world’s leading neurologist in treating autism? and across from Dr. Buie? who just gave an extraordinary presentation on severe gastrointestinal  disease in autism? just how stupid does a person need to be to get money for research? please baby Jesus do not allow this vermin to procreate. ect?……ECT!?!?!?!  don’t even look at me, bitch, or i will fly across this table and rip your scalp off.

at one point, after arriving late, insel left early because his daughter just had her third baby. last i checked, grandpa doesn’t lactate so immediate duties would probably just include indoctrination into the inner circle of evil. that poor kid, just can’t choose what family you get stuck being born into. bottom line, the whole thing was surreal. three minutes? wtf? but then again, that’s plenty of time to say these words...”we’ve filed a petition in federal court”...or something similar. i’m sure that’s not legally correct for those haters previously referred to...aaaaaaand that’s because i’m not an attorney. aaaaand my education wasn’t well rounded ivy league it was degenerate community college. what i said in my three minutes i really meant. but you know how after an argument with someone is over you think of really cool shit to say but you can’t go back? here are mine...

everyone on this bullshit committee knows vaccines cause autism and that these kids are sick and you are all going to burn in hell for all of eternity because you’re not doing a fucking thing about it

if you are small enough to fit in my bag and have a history of corruption and genocide against the children of this nation, probably not a good idea to ride the elevator with me during lunch break

yes we just found out we could give public comment and you better believe we will be back every time from now on to make your disgusting existence as painful as possible for those 3 measly minutes

we can read so we will eventually figure out how to sue you or put you in jail or make your life miserable trying to do both

our recovered, very capable kids will get older and be extremely pissed off at you. they also have siblings that were neglected so good luck with that

nothing you do, say, don’t do, don’t say, changes the fact that our kids are being denied access to the same health care as everyone else. that’s called discrimination. and it’s discrimination against disabled individuals. and that, my friends, is illegal.

next stop, congressional hearing

i’m out

rubolino

brand new....right out the box

you better hope you’re on the right side of truth if you see your name in here

peace out

rubolino