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