Sunday, January 03, 2010

We Need Healthcare Reform: A First-Person (Horizontal) Perspective

Anyone who says America has the greatest health care in the world has either never experienced much of it first-hand, or has no perspective. I got to celebrate this 3-day weekend largerly in the company of America's healthcare community, and my experience reconfirmed my long-held suspicion that many, if not most, mainstream healthcare decisions in this country turn not on the question of what is necessary or helpful for the patient, but on what the healthcare provider will be able to bill for and collect. While it may seem pretentious for me, a mere patient, to criticize American healthcare on a blog run by someone who's actually in the biz (and whose beautiful wife is also in the biz), pretention never stopped me in the past. And so, herewith, a first-person (horizontal) perspective on why we need to euthanize our current healthcare system.

Our story starts on Thursday, December 31, when our hero (me) wakes up not feeling so great. Kinda flu-y. I stay home from work, participate in a few conference calls, shit soup a few times, the usual stuff. Around noon, I start getting these amazing intestinal cramps. Now, this is not a new experience to me. About 2 years ago, I got diagnosed with Crohn's Disease (a mild case, thankfully), and every few months, I get to experience my digestive tract grinding to halt. In the past, this meant a painful afternoon, but by the next morning, I'd be back to good. I followed the same course of treatment this time: ignored the pain (and by ignored, I mean I had a few drinks to take the edge off), went to bed, hoped for the best.

The next morning (Friday, 1/1/10) was not the best, however. In fact, it was much, much worse. The pain was now nearing heroic levels. I've had kidney stones before, and I would say (and got to say several times that day) that the pain I was in was very comparable. So: pretty bad. After getting up, I sat on the couch for about 5 minutes before telling Amy it was time to head to the hospital. If only to get Daddy some pain meds. 15 minutes later, I was standing in the emergency room of the local hospital. 8:30 a.m. on New Years' Day turned out to be a good time to visit the ER. As I stood at the check-in desk, visibly sweating, audibly panting, eyes closed, having a hard time speaking, I got to answer questions like "what is your religious preference?" It was all I could do not to say that I belong to the Holy and Sacred Church of Give Me Fucking Demerol Right Fucking Now, but I knew from previous experiences that this would not help. After answering approximately 48 questions and handing over my drivers license and insurance card, I got ushered into the waiting room. ER waiting rooms are like the first ring of Dante's Inferno: no one is happy, but no one is complaining much, either. We all know we're doomed, we all know there's nothing we can do about it, but there's not much point in talking about it, either. In the waiting room with me were: a 20-something hipster in Japanese denim and a hoodie, who spent all his time IM'ing on his Iphone, from which I deduced that he had taken his New Years date here after she OD'd; and a small family of Mexicans who had apparently brought a quilt with them, and were snuggled up under it while watching TV.

After 10 minutes or so, I was called into another room to answer the same 48 questions all over again. Thus began the first pattern I noticed in my journey through the health care system: everyone asks questions because they're on a form, and the questioner always dutifully fills out the form to prove he or she asked the questions, and then the form apparently is either destroyed or filed in the same warehouse where they keep the Ark of the Covenant (Top....Men), because no one you meet during your journey shows any evidence of being even vaguely familiar with any information you gave anyone at any previous stage in your journey. It's like being treated by the guy from Memento. A second pattern began to develop here, too, a pattern I call Everyone Hears But No One Listens. I don't want to spoil the pattern for you, so I'll just say that, in this conversation, I told the woman that many previous encounters with pain had demonstrated that I don't respond at all to morphine. It makes me light-headed, but I get no pain relief at all.

From this room, I get ushered into another room, given one of those nice hospital "gowns" to put on, and told to wait. About 15 minutes later, a new person walks in and asks me the same 48 questions all over again (the running summary is as follows. Time in ER: 40 minutes. Different people seen: 3. Times asked the 48 questions: 3. Logical staffing decisions made by local healthcare monopoly: 0.). When she inquires as to my pain level, I give her the kidney stone analogy, and tell her that I have been dosed with morphine many times in the past, and have never responded to it at all. She responds and says there are some other drugs they have that they can try. I smile and thank her. She leaves.

15 minutes later, she reappears (this marks the first time I see the same person twice--this is my official ER nurse. She will also be almost the only marginally competent person I will encounter in my entire journey. I like her.) with an IV kit and some other stuff. I smile: pain relief is, at long last, on the way. She sets the IV and flushes it with saline (apprently a common procedure, as this will be done approximately 2 dozen times during the next 24 hours, and every time they stuff a few dozen cc's of saline in my left arm vein, I can taste it, which seems odd. When I write a book about my experiences with the health care system, it will be called Tastes Like Saline: My Journey Through The Medical Looking Glass.) Then, she announced that she has my painkiller: morphine. (Seriously, anyone who didn't see this coming needs to pay more attention.) I told her again (now the third time I'd gone out of my way to make this observation) that I don't respond to morphine, and she said that the doctor said to try it anyway. I made a mental note to nutpunch the doctor when I met him, and settled in for another 30 minutes of pain.

30 minutes later, I'm dizzy, but still in pain. The ER nurse comes back in to check on me and asks how things are going. I tell her it's basically the same, plus lightheadedness, and she leaves to get me Dilaudid, which worked like a charm. It also kept me in more or less no frame of mind whatsoever, which is why the details for the next 6 hours are a little more sparse. Now mostly pain-free, I met the doctor for the first time. She had no nuts to punch, and appeared to be 14 years old. I told her that my experiences for the last 24 hours were very similar to other epsiodes of Crohn's flare-ups that I've experienced in the past, only more so. This is the second person I've given this bit of information to. The doctor gives me an 8-ounce cup of vaguely fruity, extra-thick water to drink. Even in my blissed-out state, I know what this means. When the second cup comes an hour later (along with another miligram of Dilaudid), I down it, too. Pretty soon, I'm skimming my way up to the CT scanner. 20 minutes later, I'm back down in the same room in ER I've occupied for the last several hours.

Around 11:00, the doctor comes in to tell me they're admitting me. The CT scan shows some inflamation in my lower abdomen, which could be Crohn's (gee, you think?) or it could be appendicitus. Some unnamed surgeon is going to look at the scan and decide what needs to be done. They take about 4 gallons of blood out of my arm for testing, which the surgeon will also review. Being admitted to the hospital means, among other things, that I'll never see the ER nurse again, because all hospital staffing is done on a turf basis, not on the basis of whether the individual has valuable knowledge that could help in the treatment of the patient. Besides, all that knowledge has been written down onto forms, as noted earlier. So, I'm whisked up into the hospital proper.

In my hospital room, I am introduced to my treating nurse, which beings another lesson in modern healthcare that I'll call Say That Again in English. As much as it pains me, as a far-left liberal, to say this, it seems clear to me that, in critical healthcare settings, such as hospital nurses, total fluency in the English language is pretty much a requirement of the job. It's just not safe any other way. And yet, beginning with my admission to the hospital proper, my encounters were almost exclusively with people who had only a passing aquaintance with English. Including my hospital nurse. When she stuck her head in, around 11:30, both Amy and I informed her that I needed more painkiller. She said she would check and be right back. About noon, she came back with morphine, which she said the records indicated was what I was being treated with. Notice how this could have been avoided had my ER nurse followed me up? Amy and I informed her that was wrong, that my chart should have Dilaudid on it, and that the pharmacy should know this. She said she would check on that, but first, she had 48 questions she needed me to answer. I realize, in retrospect, that I should have refused to answer until I got my Dilaudid. Since all she cared about was getting her 48 questions answered, maybe refusing to answer would have motivated her to get on the ball. But, instead, like a compliant patient, I answered the questions for the fourth time.

Around 1:00, now back in serious pain, I hit the nurse call button to inquire as to my pain meds. Another woman appeared, and told me she would get my nurse. As she left, another woman came in to take my blood pressure and tempreture for about the eighth time. When she was done, she asked me "If I get wait, can you stand?" I stared blankly at her, and then asked her to repeat herself. She asked, "If I go get the wait, can you stand on it?" After staring at her for maybe 8 more hours, I asked "Do you mean the scale? Can I stand on a scale? I'm sure I can." She then left, and a minute later, came back, pulling a large device that said, in 30-point font "Excelon Medical Scale." I stood on it, and it told her my weight, which she wrote down. I have to ask: obviously, weighing people with a scale is part of this person's every-day job. She must do it a dozen times a day or more. The equipment itself says "scale" on it in large, capital letters. How in the name of 8-pound, 6-ounce baby Jesus can she not know what the scale is called? How can this inspire me to be confident that I'm going to get decent treatment at this hospital?

As the Go Get Wait girl left, another woman came in to tell me my nurse was on her lunch break, but would be back promptly at 1:40 to check on me. At 2:00, my nurse stuck her head in and asked what I wanted. Given that her inattentiveness had, over the last 3 hours, plunged me from blissful, Dilaudid-induced peace into pain-filled Hell, I couldn't very well tell her what I really wanted, because it involved her and Pinhead meeting in a dark alley in another dimension, so I instead asked, again, about my painkiller. She left to go find out. At 2:30, I hit the nurse call button, and another woman asked me what I wanted, and I barely avoided saying "Tran's head on a pike" (Tran being my nurse). The woman left to go find Tran. At 3:15, I hit the button again. Another woman appeared, and when I inquired as to Tran, informed me that Tran had gone off-shift at 3:00, and another nurse would be taking care of me. When I asked to see her, I was informed she was in the shift-change meeting until 3:30, but the woman would tell the nurse to come check on me immediately. When I was initially informed, at 1:00ish, that Tran was on lunch break, it seemed totally reasonable. However, in retrospect, when someone who clocks out at 3:00 goes on lunch break at 1:00, the message really is "I'm done for the day." That break is calculated so that, after lunch, you have only an hour before you're off-shift, and nothing useful can be done in an hour. It's clever, but allowing nurses to do things like that isn't really patient-friendly.

The new nurse, Jorene, indeed did come in at almost 3:30, and politely inquired what she could do for me. Suffice it to say, Jorene and I got off on the wrong foot. It wasn't my fault, and it wasn't hers, but she was now following the elephant parade with a pooper-scooper, as people sometimes say, and even though it was her predecessor who royally screwed the pooch, the wrath fell on Jorene. She sucked it up, and went looking for my painkiller. Thankfully, Jorene was almost as competent as my ER nurse, and by 4:00, I was back on the Dilaudid pony. The pain issue having been resolved, I asked whether the unnamed surgeon had looked at my CT scan and decided what to do. Jorene said the surgeon hadn't looked at the chart, but that she would call and see if the surgeon could do so and come up and talk to me. I can only assume that the surgeon's pressing golf game had kept her (as it turned out) from looking at my scan for the last 4 hours. Jorene must have been convincing, because at 4:30, the surgeon came in to tell me that the CT scan was really inconclusive (thanks, doc!). It showed some lower abdominal inflamation that could be appendicitus, or it could be Crohn's related. She puts me on antibiotics, and says they're going to "watch me." Later, I openly bet Jorene that "watch me" means they're going to see if my appendix bursts, because, if so, it was probably appendicitus.

The surgeon leaves, and Jorene returns to hook me up to the antibiotics machine. I ask Jorene if I can have some water, because it's been almost 24 hours since I had any, and I'm losing my voice. Jorene says I can't have water, because they might operate on me. I note that it's 4:30, and ask if they're seriously going to operate on me tonight, such that I can't have even a cup of water. Jorene answers Sphinx-like, telling me that, in the hospital, they can operate at any time. Jorene leaves, and the battle of Man versus Antibiotics Machine begins. I'm hooked up to some kind of Abbot Labs device that chugs like a small steam engine, clicking and whirring at odd intervals, apparently pumpting antibiotics into my IV. The problem is that, if I so much as twitch my left arm (into which the IV is set), the machine stops pumping at sets off an annoying alarm-clock-like alarm. After the fourth or fifth time, Amy and I learn how to reset the machine (turn it to Hold, then back to On, and it chugs on). The fact that this thing is so extremely sensitive, and unable to figure out for itself that it can continue pumping without human interaction to switch it on and off, leads me to conclude it was developed to pump things into people in a coma.

At 6:00, Jorene returns to dose me again, and to tell me I'm being transfered to another hospital in the system, because a GI specialist is visiting that hospital tomorrow and will decide what to do with me. I note that the transfer sounds like it means no surgery for tonight, so how about some fricking water? Jorene counters with a pitcher full of ice chips, possible the most useless treatment for thirst since sand-in-a-cup was invented. When she leaves, Amy counters with the ever popular "dump out the pitcher of ice chips in the bathroom and fill the pitcher with water from the sink" move. I drink the entire pitcher of water, and feel much, much better. Contrary to popular medical opinion, the Earth does not shatter into a million tiny pieces as a result of me having some water.

At 7:00, the transfer team appears to tote me to the other hospital. I call the transfer team The Friendliest San Francisco Lesbians In The History of Ever (TFSFLITHE, for short), and I wish I had gotten their names and numbers, because I would love go to drinking at dive bars with them. They were friendly, and funny, and I know for a fact they were both honest-to-goodness lesbians because one of them talked to me about the apartment she was renting with her partner, and the other one looked like a 12-year-old Iowa boy, complete with buzz-cut. And they muscled my considerable frame up and down on the transfer cart without so much as a grunt.

At 8:00, I was at the new hospital, and apparently my entire course of treatment had changed. No more antibiotics. Instead, anti-inflamatories and steriods. Painkillers came right on time. The room was nicer, the TV was bigger, and Amy had gone home for the night (at my insistence). My new nurse asked me the 48 questions again. When she left, an intern came in. The intern broke all past stereotypes (except that she was Asian), insofar as: she actually had read my chart, and asked questions that showed she knew what had gone on in the past, and listened to things I had to say. And she earned a special place in my heart because she agreed to let me have a glass of cranberry juice. I had asked four or five times in the past, but had always been denied, never for any good reason. Finally, someone acknowledged that they definitely weren't going to cut me up in the near future, so some cranberry juice would be fine. It was fantastic!

At 10:00, my nurse came back in to give me my pain meds, and I didn't need any. I was actually feeling really good. I assured her I would hit the button if I was in pain, but otherwise, I'd really just like to sleep. She shut off the lights, and closed the door, and I fell asleep. For a half-hour. Because that's when another person came in to check my blood pressure, tempreture, heart rate, and weigh me again. When the subject of weighing me came up, I pointed out that I had been weighed approximately 7 hours ago, and I doubted my weight had changed much. She countered that my weight wasn't written down anywhere in my chart. It didn't occur to me to ask her to look and see if the word "scale" was written down anywhere, with some numbers next to it. This woman left, and left the light on and the door open. Thanks! No, really: I'll just get up and turn the lights off and close the door. Which I did, and then went back to sleep. For a half-hour. Which was when another person came in to take an absolute shit-ton of blood samples for testing. When she announced this, I told her I had already had a lot of blood work done earlier that day, and asked whether any of the test results where in my records. This apparently flustered her, and she shuffled a lot of papers back and forth for a few minutes, and then said "every doctor mostly wants his own tests." She then took 8 or so vials of blood from three different locations on two different arms (both mine). As Vampyra was leaving, my nurse came in and asked if there was anything I needed. I said, rather bluntly, that all I wanted was to sleep. I got my wish.

At 8:00 the next day, I woke up, and I felt great. Someone came in a took my blood pressure, tempreture, and heart rate for the 77nd time in the last 24 hours. Then a Russian woman came in and told me she was going to hook me up to an EKG machine. Surprised, I asked why. She looked at some papers, and half-said, half-asked "You're having chest pains?" I told her I had never had chest pains in my life, not to mention that I hadn't had any recently. She responded that the doctor wanted an EKG reading, and the test wouldn't hurt. This brings me to another great revelation about American health-care: it's the Great American Involuntary Dim Sum Restaurant. Anyone who's been to a dim sum restaurant knows the deal: waitresses push big carts from table to table, show you what they've got, you say what you want, they stamp your bill with some magic stamp, then leave, then the next cart pulls up a few minutes later. At the end of the day, some old Chinese woman looks at the magic stamps and figures out how much you owe. It's much the same in American healthcare, except that you don't get to choose what you get from each cart. Instead, the person selling the food gets to chose. They roll the cart up to you, size you up (or, more likely, size up your insurance), and then unload whatever they want. Maybe it's something you want, like pain meds or BBQ pork buns. Maybe it's something you don't want, like extra blood tests or chicken feet. Maybe it's something you absolutely don't need, like EKG tests or lobster thermadore. Doesn't matter. They stamp your ticket, and your insurance pays. It's one of the only industries where the person getting the money decides, unilaterally, how much money you're going to give them.

At 10:00, I finally see the GI doctor. We talk for 15 minutes or so, and he concludes that whatever was wrong with me has passed (thanks for that revelation, doc!), and that I'm free to go. His leaving marked another great revelation in the working of the modern, American healthcare system, which I call 5 Minutes With the Great and Powerful Oz. In my 30 hours in the hospital, I spent approximately 30 minutes in the same room with an actual doctor. Every other contact I had was with nurses or staff, many of the barely-English-speaking variety. Every request I made, every question I had, had to be run through "the doctor." But "the doctor," (and there were at least 5 doctors I spent time with) didn't know me, hadn't spoken to me, didn't know my history, etc. etc. How was "the doctor" supposed to make smart decisions about things like what painkiller to give me, whether to let me have water, or whether to run EKG tests, if "the doctor" had never met or spoken to me? Either the nurses were lying to me about the necessity of all decisions going through "the doctor" (very possible) or the mysterious, absent "doctor" was making all these decisions based solely on information communicated to him or her through my often-not-fluent-in-English nurses. If it's the latter, that's got to be the scariest game of Telephone ever played, because it's the patient's life that's on the line.

The GI doctor leaving also marked the beginning of the stall-the-patient period of my treatment. Remember: the doctor said I was fine, and free to go. I was certainly ready to go. The GI doctor's only condition was that I had to demonstrate that I could handle clear liquids. Given that I had drank 2 pitchers of water already that morning (supplied, this time, by the nurse, thanks to the intervention of the intern), I considered that condition pretty much fulfilled. A half-hour after the doctor left, I buzzed the nurse to see what was going on. She said the doctor had ordered a plate of clear liquid foods for me to ingest, then I could go. I pointed out the pitchers of water I had drunk, but the Great and Powerful Oz had spoken, and I apparently needed to demonstrate that I could swallow beef broth as easily as I could swallow water. It took the clear liquids almost 2 hours to get to my room. I downed them, then hit the nurse buttom, and proudly showed off my empty plate. The nurse said "the doctor" needed to see me, then I could get discharged. I waited for 90 minutes for "the doctor," who was a different doctor than any I'd seen before. He apologized for being late, shook my hand, said I was free to leave, apologized again for being late, and left. He was in my room for less than 3 minutes. WTF was this about? Why was this necessary? Why had I had to wait for an hour and a half for this 3 minute fly-by with Dr. Know-Nothing?

At the end of the day, American medicine had worked in exactly the way that internal medicine often works: they had taken care of the symptoms (pain) and monitored my condition while my body fixed itself. Along the way, I met exactly 3 people who showed any real interest in my condition (not counting TFSFLITHE, who were extra sweet). Everyone else was just punching the clock. At every single hand-off (ER to hospital, shift nurse to shift nurse, and hospital to hospital), all accumulated knowledge about me, my problem, and what had been done to date disappeared entirely, and we started all over again. While no one on the medical side professed to have any idea why I suddenly got better, I will point out the following: from the beginning, I told everyone who treated me that this felt exactly like other Crohn's flare-ups I'd had, just worse. During my time in the first hospital, I was treated solely as though this was appendicitus (antibiotics, and waiting to see if my appendix burst). When I was transferred to the second hospital, I was treated as though my symptoms were Crohn's-related (anti-inflamatories and steriods). Within 3 hours, I felt completely better. It's hard not to infer a conclusion here.

I am fascinated to see what this all will cost. I know it will cost me almost nothing, and I know that hospitals count on this fact when they treat you. I'm no great fan of insurance companies, and it felt odd for me to be complaining about receiving treatment on the basis that I didn't think it was fair to bill my insurance for something so completely unnecessary, but the excesses of treatment I received reached the point where no rational person would be undisturbed. I left with the distinct impression that almost nothing about my visit seemed to be governed by logic or the desire to effectively treat me. So many easy changes could be made that would have dramatically improved my treatment, including letting my ER nurse follow me to the hospital wing and continue treating me, a small change that would have prevented 4+ hours of horrible pain while my new nurse tried to figure out my pain meds, took her late lunch break, and ignored me until the end of my shift. But this structure didn't happen spontaneously---it's here because it makes hospitals money under the current system. And without fundamental changes to that system, you shouldn't expect to see things change.


Lord Bling said...

I was really tempted to start this comment with 'tl;dr', but I actually did read it all. :)

There's a lot I could comment on here, but I'll just focus on one key point: I also insist on having someone treat me who has English as their first language. I don't consider this racist, nor do I think it makes me any less of a liberal. When someone is describing something that deals with my health, or even possibly life and death, I want it explained to me clearly and plainly, by someone who speaks my language. I don't think that's too much to ask, and I wouldn't feel offended if someone who speaks a different language had a similar request if I were their doctor.

Ryan the Angry Midget said...

The saddest part of your entire situation is that as a health practitioner who is married to a health practitioner who works in hospital administration, there is nothing the least bit surprising about your experience. I can think of a number of situations where the outcome was much less favorable for the patient.

Our health care system is broken on so many levels, it's daunting to think about how to go about fixing it. All of these problems that you encountered are related.

Not seeing a doctor in the hospital? The insurance system (based on Medicare) pays doctors more money for seeing patients in their office than in the hospital. Simple economics dictates that physicians should spend more time in the office than seeing patients in the hospital and a large number of physicians, particularly if they don't need surgical access, are dropping their hospital affiliations. You would think that private insurance companies would have their own rates for reimbursement, but everything they do is based on Medicare.

There's also a shortage of well-trained medical personnel, including physicians and nurses. This has two huge consequences: 1)We pay existing practioners more money to keep them happy. 2) Nurses particularly never get fired because they know hospitals are required to maintain staffing levels that they can't even maintain.

My hope is that we will see improvements in reimbursement with health care reform that will resolve the generally poor care you experience in hospitals. I don't see the shortage improving, particularly for any plan that has greater access to care. We shouldn't push underqualified practitioners into the field, which occurred earlier in this decade with 1-year nursing programs cropping up everywhere (the results of which you experienced firsthand with Tran or Nguyen or whatever her name was).

Until something changes, just hope you don't get really sick.