Several years ago I made a run to a trailer park near Dallas, TX. It was dispatched as a general sick call. Upon arrival we walked up to the front door of a dilapidated single-wide and were taken aback by the stench. An old man met us at the door who was having trouble communicating. At first I thought that he might be a recovering stroke victim. But as the conversation progressed I realized that he must be mentally impaired in some way. There was no specific deficit, there was no language barrier, and he was not intoxicated. He simply couldn’t function on the average adult level. He spoke to us at the door for a long time about just about anything but why he called 911. For the first minute or so I thought he was the patient. Then through conversation I learned that he was the caregiver for another person inside who was the subject of the 911 call.
We went inside and the stench got worse. We found another man of about the same age lying on the couch. He was non-verbal, emaciated, and the source of the smell. There was a 5-gallon plastic Home Depot bucket next to the bed full of urine. A plastic hose ran from the man’s penis directly into the bucket. It was obvious that this tube used to lead to a foley catheter, but it had been cut and the end placed in the bucket. From the looks of the carpet near the couch, the tube often slipped out of the bucket and ran on the floor.
The patient had a fever, and was filthy, but other wise stable. He was sick and in horrible condition, but his breathing was adequate and his vital signs were fine so I decided to take the time to ask some questions. The man who was functioning as his care giver needed a care giver himself. He couldn’t answer any questions about the patient and was confused about every statement I made. After a while I simply marked “unknown” on most of the information boxes on my run form and made a move to lift up the patient.
That’s where the real trouble began. As we lifted the patient, the couch cushions came up with him. They were saturated with excrement and were fused to his skin. At this point I stepped outside with my partner for a moment to get some fresh air and try to formulate a plan. We put on gowns and goggles and went back in for another go. This time we were able to carefully peel one of the cushions away from his skin. The second however was solidly fused to his back and every attempt to pull it away threatened to tear his skin. So in the end we simply took the patient and the cushion as a unit and transported them both. I wasn’t sure what to do with the urine bucket, so I just took it with us. I emptied it in the lawn and set it on the floor of the ambulance.
Let me tell you, the ER was pretty shocked on our arrival. The nurse got pretty rough with us and started chewing us out and I cut her off quick, “So what was I supposed to do, leave him there? Was I supposed to rip his skin off? We aren’t allowed to take out foleys, and to be honest his was fused a long time ago. Should we have cut it off and let him piss on the cot? You seemed to be such a damned expert who is so much more informed than me, please tell me what I should have done.”
“Well, I don’t really know. It’s just frustrating to get a patient like this.”
“And it’s frustrating to trounce around in his pissed soaked trailer about to puke from the smell. What room do you want him in?”
I was making friends everywhere. She might have called in on me, but this was one of the dozens of times in my career where I should have just listened to my instincts and quit this job. I was single back then. I would have survived it. And my life might be different now…
But I didn’t quit. I talked at length with the social worker. I called and gave a report to Adult Protective Services. And a few days later I walked by a crew in the smoking hut who was telling a story about a similar patient except in reverse. They must have taken him home. Oh well.
The reason that I bring up this story is that in the last few years I have been noticing the lines blur between mere ignorance and retardation. I work in a very rural district in Kentucky where many of my patients are in similar circumstances as the story I just told. Many of these people are at a level of function that suggests retardation, yet they have jobs, own land, and pay taxes. They are independent and have been living by themselves for years, but they are filthy and live in housing that is falling down with urine and feces in places other than the restroom. In some cases they have a dirt floor, and there is no restroom at all. Despite the fact that they speak English, I cannot understand what they are saying. They have no teeth and extremely poor hygiene. The simplest of questions confuses them, and they often become angry and frustrated and act inappropriately upon questioning. More than once I have assumed that a patient must have an altered mental status and was preparing to restrain them and take them against their will based on implied consent when a partner took me aside and said something like, “Hold up man, this is just how he is. This guy works at the factory down the street. This is his normal level of orientation.”
“Is he retarded or impaired in some way?”
“Not that I know of. I think this guy graduated high school.”
Mental retardation used to be defined as an intellectual deficit that has led the patient to have an IQ lower than 70, which is about two standard deviations below the norm which is 100. A new definition that is being used in some states describes a decrease in functionality from the norm based on the judgment of a trained mental health professional. This second definition which was adopted by many states in 2002 is gaining acceptance but blurs the lines quite a bit.
My question is this: Does the government have a right to step in and mitigate the living conditions of someone who may not be legally retarded, but is obviously not behaving appropriately or living in accordance with societal norms? It is important for the reader to realize that I am not talking about any minority group. I am not talking about illegal immigrants. I am talking about white, Anglo-Saxon citizens of the United States who hold jobs, pay taxes, and legally vote. This is a social group to which I belong. But it is obvious that there is a difference in how I conduct myself, and how they conduct themselves. And this goes beyond a life style choice. The differences have to do with hygiene, basic utilities, disease propagation, child care, and basic rights and services.
I realize that this is opening up a dangerous can of worms. Often times when I write a post like this, I am vehemently spouting my opinion, but this time this is not the case. I really don’t know. This is an open ended question that I have been wrestling with for the past few years.
Keep in mind. I do not want to judge anyone’s life style. I do not want to curtail someone’s right to follow a certain religion, or live the way they want to. But if I walk into a trailer and find a guy fused to his own couch cushions with dried shit, an open infected tube running from his penis to a Home Depot bucket, and urine and feces laying around in a living room that has obviously not been cleaned in years, shouldn’t someone step in?
Anyone who has worked as an administrator or a manager for an EMS system or other government agency will have ready made answers for this. Houses that are a fire hazard should be reported to the authorities. Adult protective services will take reports and investigate the living conditions of patients that you report. Child protective services will investigate when you report. Social workers are available at hospitals to take reports about the living conditions of patients. There are agencies and systems available for all of this.
My question is, “Does this work?” Of course not.
According to this report by the Courier-Journal more than half of the childhood deaths from abuse were reported to authorities prior to the incident that caused the death. And I can tell you that most of these patients go right back to where they came from on another ambulance. We will hold our breath, put on a gown, and set the patient right back in their own filth and try and find someone who can write to sign their name on the run form. If we can’t, we have someone put an ‘X’.
My wife who is a student of anthropology has presented another wrinkle to this situation that I have never thought about. She reminded me that it is wrong for us to go to other countries and purposefully change or ‘improve’ cultures who do not wish contact with us. These cases almost always have tragic outcomes. Sometimes cultures wish to be left alone and indeed would be better left alone. Why would this wise doctrine stop inside our borders? Many of the inhabitants of Appalachia have made it perfectly clear that they have their own culture and that they have no wish to participate in ours. Why is this any different from the Native Americans or any other culture outside our borders?
What is America? What are the norms of our culture? What is the definition of a tribe? And who needs services? Who deserves services? And who should be forced to accept services?
Many of these low functioning people that I encounter are the first to identify themselves as Americans. And to be honest, most of these people describe themselves as card carrying Republicans. As a side note to all of my Republican readers, please do not take this comment the wrong way. This is an honest observation. Both political parties, Democrats included, pad their ranks with the ignorant. This is well known. They will take their stance, and put a bow on it, and quietly spin it for a certain social group to add to their ranks of voters. To be brutally honest, these ignorant folks are horribly racist and fearful of Muslims, and many will tell you that they voted for George Bush because “he is a God fearing man that wants to kill those evil brown heathens.” I’m not kidding. I have had this conversation several times. They love to bring it up. One of the most common questions to gauge orientation in a patient is to ask them who is the current president. Since Obama has become president I have heard such inappropriate answers to this question that I never ask it anymore. Even with the confused patient, asking that question starts a racial tirade that is often hard to recover from.
Another thing I hear from these low functioning insular people is, “This is America, God Damnit, love it or leave it!” It’s funny how so many ignorant people think that America is defined by their narrow view. As if THEIR America is THE America. Someone who has never been more than fifty miles from home, dropped out of elementary school, and has no running water and no teeth can speak with authority for over 300 million people in our country that is over 3000 miles wide. THEIR America…love it or leave it, pal.
Is someone who is born within our borders, pays taxes, and accepts financial aid from the government automatically bound by the constraints of the social contract? Should anyone be allowed to be so insular and live within the constraints of such profound self imposed ignorance that the average health care worker assumes this person is mentally retarded? Should any self proclaimed ‘culture’ in the United States be allowed to live in their own filth and collect food stamps and SSI checks while refusing to follow the simple basics of hygiene and live in a fire trap without running water? When should we step in and remove the children? If someone has an IQ of below 70 and a mental health professional has deemed that they are below a normal functioning level, but they are oriented, self sufficient and employed, can we compel this person to accept assistance and education? Or should we just detonate a few bombs in Kentucky and West Virginia, and salt the earth as we drive away from the wreckage of toothless America?
I can tell you what we can’t do, and that’s keep looking the other way and pretending that our current system is working. There are several problems converging here:
- Our society has moved from an agricultural based society to an industrial based society. Then from an industrial based society to an information based society. Changing a way of life, economy, and throwing technology in the mix will always throw a culture off balance and leave a certain percentage of the less-well-to-do behind. But it is obvious that many people in this country still cling to an agrarian culture, not having even accepted the industrial age yet. It is extremely disorienting for a certain segment of the population.
- Then we have trade agreements such as NAFTA in which all of our manufacturing jobs have been shunted to other countries. I guess it was assumed that the slower kids were just going to go back to school and better themselves so they could work in the sea of cubicles which is now the American professional landscape. I’m sorry, but a certain percentage of our population is just simply incapable of doing that. Those members of our society with IQ’s around 70-80 find themselves competing with much smarter and more productive people who have lost their higher paying jobs and are making do with taking jobs that they previously thought were beneath them. The low end of America literally has no where to go.
- As the economy worsens and jobs recede, the budgets for social programs will be cut at a time when they are needed more than ever. Frustrated, unemployed, uninsured people will find themselves with very little help after being put between a rock and a hard place. And it is showing.
The ironic thing is that many of these people voted for the same party which works to perpetuate this situation. There aren’t very many differences between Democrats and Republicans. They both lie and misappropriate money. But one small difference between them is that the Democrats at least pretend to be more giving with social programs that should benefit this segment of the population. Ironically, most of the people I have encountered in this situation identify themselves as diehard Republicans as I mentioned earlier. Republicans are seen by this income group as being “tough on foreigners.” This group has a strong basis for racial prejudice to begin with, and many of them oversimplify the issues, making it seem as if foreign people came and took their jobs away, when it was members of their own political party that cut most of the deals that sent manufacturing overseas. Please note: I am not naïve enough to think the Democrats did not have a hand in this as well. It’s just that the Republicans identify with this stance readily and are proud of it. The great unwashed of this country proudly line up to vote for the very party which looks at them with contempt and openly seeks to reduce the amount of services for which they would be eligible. But as long as the Republicans look like they still wish to drop bombs on brown people, this demographic will keep proudly proclaiming, “America! Love it or leave it!”
Carl Rove is a fucking genius. This is sick.
Either way, I simply don’t have the answer. The money to help these people doesn’t exist. Forcing assistance based on a measurement of mental function and living conditions is hard to justify as well. Obama is far from riding in on a white horse to help this segment of the population, but I do find it odd to see someone dying slowly from emphysema in a urine soaked trailer vehemently arguing against socialized healthcare in the same breath as informing me that they could not afford their prednisone.
I guess I should follow their advice. “America, love it or leave it.!”
Hoo, boy. Can of worms, indeed!
There is a lot to think about and discuss, and precious few “answers.”
I’ll keep it to a few things.
One is that there is no way to decide, to judge, what is appropriate and what is not, for how people choose to live. Yes, there are extremes, but not everyone even sees the same things as “extreme.” Some seem obvious- like your patient with couch cushions fused to his back- but short that, where do you draw the line? Over the line is sometimes easy to see, but the line, itself, is not.
Life is very different in different places. I have friends who choose to live in yurts, no running water, no electricity, no permanent location. They are very happy. I have other friends who live in very cluttered houses, with more stuff than should be there, and although many people might be uncomfortable that way, they are happy. I have friends who live in apartments that look like they are right out of some design magazine. Happy again. It’s a matter of choices, of preferences, that I wouldn’t want to mess with.
But clearly, there are also situations that are, in a word, bad. And you’re right, the “system” isn’t working. Yes, they can be reported, but what happens next? Does it really help anyone? I haven’t seen an example where someone has gone into a situation, and made it better. Take someone out of a situation, maybe. Fix the situation? Haven’t seen it. There is so much involved it’s difficult to even know where to start. Personal freedom, upbringing, preferences, habits, knowledge and skills or lack thereof, and money. Don’t forget the money. And to be able to help someone out of a mess, while treating them respectfully as a person.
I’d love to hear anything anyone has to offer on how to get at the root of the problem.
I do have to disagree with one part of what you wrote, though. While overall, the dominant culture has moved to an information-based culture, there are still plenty of places where it is still an agrarian culture. It’s not just people hanging onto the way things were, it’s the way things are. The ones who will survive, I believe, are those who find a way to merge the two, and use the information culture to improve the agrarian one.
[...] Difficult questions for more than difficult situations. (Gomerville) [...]
Where to start… Life style choices? No, health care reform? No, politics? No, Why do people choose to be involved in the pre-hospital health care arena? Yeah, lets start there.
I can feel the frustration in this letter and I find it interesting that the authors wife is an antropologist. It reminds me of an article I read years ago about how some society’s dealt with their aged members. I seem to remember an eskimo tribe that merely placed thier aged family member on an ice flow and shoved them out to sea. While by today’s standards this seems cruel, the hard core reality is, that one older member of the group would have taken up so many resources that they could have endangered the survival of the group. The survuval of the group, now this is where we need to be. Have you ever thought that maybe ever pre-hospital care provider is screwing up evolution? Lets face it, the only reason we are here is because our ancestors where the smartest, strongest, and fastest of all the other humans. Our ancestors survived by strength of mind and body. The weak, died. Since they died, their lineage was terminated. Is this as cruel as the eskimo tribe? Maybe. It is this natural selection that has allowed us to become the people we are today. So where do we draw the line now? The author speaks of transporting this patient to the hospital for care and then apparently over hears a conversation of another crew that returned this patient to his previous residence. How have we improved his life or improved society as a whole? We have defenitely used resources from the health care field but were they used to the maximum benefit? I will wait here for all of the scourning and hushed remarks about how dare he write these thoughts down.
Still waiting for everyone to finish up.
Rationed healthcare!!! Now here is a slippery slope! As anyone ever stopped on wondered about the medicine we provide to the people we provide it too? Should we change the question from, “What can we do?” to “What should we do?” and if we do change the question, who should make up the answers?
I will leave this post with more questions than answers, because that is what I have.
I leave satisfied that I have added to the confusion.
Now please talk amongst yourselves.
I’m libertarian by outlook, so my opinion on the matter is clear. If they’re aware enough to be independent individuals, then their choice of lifestyle (however abhorrent it may be) is their choice, as long as it doesn’t have an impact on mine. As such, it should be possible (and legal) for you to refuse to care for someone in such a situation if it endangers your life of health. Hell, you do that now, do you not?
The alternative, of course, is even more governmental intrusion in our own lives. There are already adult protective services and the like who are more than happy to swoop in and interfere with their lives. To propose more would lead to the unacceptable — government health and welfare inspections, perhaps? Or Great Britain-style video monitoring of “at risk” families?
What you describe is truly awful, and I don’t doubt that it deeply upsets you. However, the alternative should as well.
There is no answer. That is what is frustrating. One thing about Kentucky that really gets my blood boiling is the state’s stance on child welfare. The Kentucky courts have time and time again demonstrated that it is their rock solid belief that children should be returned to their parents at all costs. This is why our numbers with neglect and violence are so horrible. All states have budget issues and a lack of qualified and willing foster parents, but Kentucky doesn’t even want to use this system. If a set of parents who have been brought before the courts on numerous occasions for beating their children attend an anger management class then our court will say, “Oh, great…all better now. Here are your children back. Good luck.”
Believe me, I am all about personal freedom and choices. Alternate lifestyles don’t freak me out either. Go ahead, be a gay couple who adopts children. I’m fine with that. Go ahead and be religious. No one should interfere until your religion is a bunch of people worshipping a comet and trying to drink poison Tang. I get that. Go ahead and be goth and liberal or conservative, or what ever you want. Its all good. There are a few situations that aren’t though.
1. Filth. This is a fire hazard and it spreads disease. I have walked into houses where the stench is not tolerable and people are coughing and wheezing due to inhaling the methane and ammonia from there own waste. Why? Because they are too lazy or drunk or high to make it to the bathroom. The lazy ones get me. I actually ran a call recently for a guy that was not disabled or affected in anyway. As a matter of fact, he works in a warehouse that is known to me. He pees in a bucket by his bed. Last time I saw him there were about 3 gallons in this bucket. WTF?
2. Children. I have been in EMS for 15 years. I have seen dozens of cases of child abuse, neglect, and poor living conditions. I have reported dozens of cases. CPS workers are always very nice when I call, and most of the time they even follow up with me later. To my knowledge not one of my phone calls has led to a child being placed anywhere. Ever. As a matter of fact, I have never even heard of any coworker or student who has ever had this result from a report either. And I used to ask this to entire classrooms full of professionals. Hundreds of people…no reports of results…ever…FAIL.
I guess what frustrates me is that the thing I am complaining about actually has laws. There are agencies to deal with it. But these laws are not enforced and the agencies are powerless. So why do we continue to pay these people for wasting time and money? My taxes go to pay for salaries, office space, vehicles, courts and lawyers, and not a damn thing happens from any of it. These filthy people continue to collect food stamps, draw SSI, or fake some sort of disability and so my taxes go to make sure these people get just enough money to get by living like they do.
I want social programs. But I want EFFECTIVE social programs. This is why you will hear me say horrible things about Republicans and Democrats alike. Republicans simply say, “Look, it didn’t work. Now screw these people. Lets all look the other way and let rich people get richer.” Democrats talk big and then spin their wheels. Every well meaning idea is hampered by the fact that it is unrealistic or gets watered down to the degree that it is ineffectual by the time it is set in motion.
BOTH ARE WRONG.
The problem here is this: retarded, ignorant, or otherwise, we can’t help everyone; not everyone wants help and some that do don’t deserve it. Sadly, some are beyond help, and you’d be surprised which group these often fall under . . .
In the case of your elderly patient, it seems like your efforts were wasted – as well as the efforts of the hospital and staff – when the patient was deposited back in his own filth. A great deal of resources and tax dollars went into this useless “transaction.”
But would classifying this man as retarded have solved anything? A life of institutionalization – albeit a clean one?
Can a retarded person also be ignorant? Where is the line drawn?
Ultimately, the answer can be found in some of the training you received in your career: identifying those who are most likely to survive and adapt.
The problem is that we’re too bound by weak-willed legislation and illogical elements of a spineless morality that just won’t allow otherwise intelligent people to make such distinctions.