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25 Jun 05 - 04:23 PM (#1509664) Subject: BS: SISOMA (very long) From: Abby Sale Trying NOT to die under medical care (Begun April 03, 2005) In among the many issues concerning Advance Directives ("Living Wills") and the Terri Schiavo case, one might also consider how to survive medical attention and the lack thereof. I can only address those fortunate enough to have access to good facilities, medicine & doctors. Third World and disenfranchised USians have other issues I can't imagine at all. We (note throughout that while it is Ancient Spouse that has suffered disease and medical attention over the decades, I have been involved in Care Giving, Strategy, Insurance, Disease Management, etc. My job is Administration - Ancient Spouse's is suffering & medical insight. I'd certainly rather have my job but I don't recommend either one. I use "we" generally because it's a team effort but I can only speak for myself) have, unfortunately, become Professional Patients. This esteemed status is only available to those who a) have some chronic medical problems and b) have been lucky enough to survive medical attention for a good period of time. Survival In Spite Of Medical Attention (SISOMA) cannot be achieved by skill, intelligence, medical training or maintaining a pure heart. One must be lucky enough to sisoma over enough years to learn enough of the medical game to defend oneself successfully against each new insult. This is not easy and takes great luck plus a certain amount of intelligent observation and courage to strike back. The medical insults are many, they've played the game far longer than you, personnel change and the rules change. In time the lucky patient can learn to guard against the common and obvious threats - are the pills the same color as they were yesterday? If not, can you reject all assurances from pill pushers that they are "just the same?" Can you send them back and/or demand to see doctor's orders and/or pharmacy reports that these are your stimulants, not the next door patient's depressants? If you can deal with this simple, obvious and common fuck-up, AND you are lucky, you might deal with the real stuff. Rule 6 - check your pills and demand a satisfactory explanation, not a glib brush-off. ══════════════════════════════════════════════════════════════════ Rule 1 is the hard one - Take charge of your own care. It's your life. Learn about your disease - it's easy now what with Medline, Merck online, etc. Follow each step and be confident it is medically reasonable. Never take any medical statement at face value. Doctors are excellent tools and you should take full advantage but they are no more authoritative than a dictionary. Maybe less. Just because a statement is given, that doesn't mean it's used the appropriate way in your particular case - or even right. You can always check another dictionary. If you believe this is too hard or that it's best to follow doctors's advice or that they even care about you for more than their fee, stop reading now. This rant will not help you. Seek religion and pray very hard to your fully-coercible god that you will never have worse than the flu. ══════════════════════════════════════════════════════════════════ Rule 2 - Always remember - in all cases - that medical personnel don't give the slightest fuck about you. This follows, of course, from Rule 1 but it needs to be separated out as well. The medical guilds have been working hard for thousands of years to convince you they only care for your interest, not their own profit, and are, therefore, true professionals. This is excellent advertising for their product and they are very good at it. You've been convinced that they care, haven't you? They don't. You are a pay check and a means of their livelihood. Same as cesspool cleaners. Forget this for even a moment and you will not sisoma. Would you blindly accept life-and-death advice from any other source? ══════════════════════════════════════════════════════════════════ Rule 3 - Hospitals are excellent at patient management. Be suspicious. Whenever they (or anyone else) claims that "this is only for your own good" you should obviously assume it is ONLY for THEIR own good. Look for the traps. Ask, "In what way is it for my own good?" Remember they've been managing suspicious, paranoid, ill people for hundreds of years and have built a vast arsenal of procedures to manage you. Not to treat you, just to manage you. They're smart and skilled and can often come up with new methods on the fly. You must learn to recognize when you are being managed. As above, that takes luck and intelligent observation - the Rule part is what to do when you do recognize managing. Balk. Refuse. Demand satisfactory (not facile) explanation. Rule 3a - If a nurse says you must/mustn't do something "Because it's a hospital Rule" ask to see the hospital's rule book. Nurse just claimed it's a hospital rule. S/he lied. S/he just invented it on the spot. You and she know it but what can you do? Ask to see the rule book. You want to be sure not to break any other rules, you say. Demand to see the rule book. Now that you've got him/her, you can ask if s/he's ever actually seen that rule in any book. Who propagated that rule? Continue in this vein until nurse leaves. You will notice that none of the hospital personnel ever play that trick on you again. ══════════════════════════════════════════════════════════════════ Rule 4. Bring a "Caring Relative," preferably a lawyer. The "CR" need not actually be related to you. S/he could be a stranger you've hired to do the job. The function is to convince the hospital that you are not alone. Generally, even if you're Woody Guthrie, you will be alone after the first few weeks or months. If the hospital suspects you are alone then they truly have you at their mercy and they can ignore you to death or be as sloppy and lazy as they will about your treatment. The CR should come at unexpected times daily and should pretend to care about you and to be Involved. You can surreptitiously pass your complaints to CR but loudly say, "Now don't bother the nurses, they're busy." (See Rule 5.) CR can be mildly unpleasant, very nosey, ask many questions of staff about your treatment - When are you scheduled for this or that? --- Do they check that you are eating your meals? --- When does your doctor arrive? -- What is the latest prognosis? -- Has the treatment had any effect? Generally, CR is not supposed to actually accomplish anything useful (although if s/he accidentally comes on important information s/he can, of course, inform you. Eg, Doctor forgot to write pain orders for you yesterday. (See Rule 6) --- Doctor went on vacation to Borneo and left his non-English speaking sub (locum) in charge --- etc.) No, no; the real function of CR is to make personnel believe that if they screw up too badly, they might be caught and your relatives/estate will sue. Personnel should believe their every move is under scrutiny - CR is everywhere at all times of day. Generally, the CR needn't spend much time at the hospital, just be very visable when s/he is there. Don't believe me? Hang around a hospital for a while and note how staff treats inmates with, and without, CRs. Especially note how they treat comatose inmates without CRs. If you believe for one second you might become a comatose inmate without a CR, you might consider having your Advance Directive (living will) blown up to 6 feet tall and glued it to the hospital wall. Or tattooed to your stomach. === N.B. It should be obvious that if you are actually very sick, in coma, doped up from pain, etc, it will be essential to have a CR who will spend significant time at the hospital and observe all these Rules for/with you. Don't be afraid to ask for this help. It's an imposition on the CR but life-saving trumps imposition. Perhaps two or three CRs on a rotating basis, with a stand-in on call - schedule them so they do not arrive at the same time. They are there to do a job of work, not cheer you up or have a party. ══════════════════════════════════════════════════════════════════ Rule 5. Be Nice. Your attitude absolutely counts. Be pleasant and helpful - bus your own tray & make your own bed, if possible. Do whatever housekeeping chores you can. Nurses prefer to see themselves as medical professionals, not chambermaids and will be grateful to you for helping out. It's also good for you to get some exercise and really, only decent that you avoid being a spoiled brat. This will be noticed. Use good manners, smile - say Please and Thank you to all personnel, high or low. You are not Lord of the Universe and they are not medieval peasants. Help other patients, if you can. It's good for you physically to get around, to do human-type good deeds and is appreciated by staff as well. Again, these acts are not only basic good manners; they also amount to an excellent ploy that may result in better service. Most importantly, this attitude could save your life. Like the boy who cried Wolf, the constant complainer is soon tuned out - ignored. Save your complaints for real medical stuff... "Pardon me, I hate to bother you but the IV line seems to have come loose and I think there's some blood leaking onto the floor." "Pardon me, I hate to bother you but the eggs have a funny odor - I think like marsh gas. Is it ok if I eat them anyway?" The nurse's response time will be closer to seconds than hours. Having promoted the image (true or false) that you are a nice, helpful, compliant, non-complaining patient, your complaints and non-compliances will be taken more seriously. Now you can feel free to balk utterly when you feel your life is at stake. Do not take that questionable pill. Do not go down to surgery when your doctor has never mentioned it and you're being treated for the flu. Do not allow the spilled "BEWARE! TOXIC WASTE" can contents to remain on the floor of your room. Do not eat food you are allergic to just because someone claims your doctor said you can have a normal diet. ══════════════════════════════════════════════════════════════════ Rule 6 - Check the size, color and code of your pills & meds and demand a satisfactory explanation, not a glib brush-off if they differ from yesterday's. (See supra.) Never take any medication in or out of hospital without first looking it up in the PDR or one of the several online sources or the insert (that is supposed to come) in the pill bottle. Ask your pharmacist for the insert. Suggestion: Consider bringing to the hospital a Physician's Desk Reference or else a laptop computer and telephone line & the URL for Medline. If there's no place to put the PDR, make room by throwing out the Gideon Bible...you weren't going to look at it, anyway. ══════════════════════════════════════════════════════════════════ Rule 7 - Do your best to avoid cross-infection. Is the nurse/doctor wearing latex gloves before touching you or your IV gear? Did s/he at least wash hands in your vision? If not, ask, "Have you recently treated a patient with HIV or hepatitis or anything else communicable?" Don't have the guts to ask? Stop reading here and make sure your (regular) will is up to date. Really! Joe Lister's first disinfected surgery was in 1865. (Here are two interesting terms you should know and remember: nosocomial infection and iatrogenic disease. If you don't, look them up - you'll remember better than if I tell you. According to the 2003 Encyclopædia Britannica, "it is estimated that as many as 30 percent of patients in, or admitted to, hospitals suffer from...iatrogenic disease.") We know that rushed hospital personnel are getting sloppier and sloppier about cleanliness today. But you don't care how bad the nurse:patient ratio is or how rushed they are -- your life is at stake! ══════════════════════════════════════════════════════════════════ Rule 8 - Bring your doctor's home phone number with you. Or, at least doctor's On Call or even office number. If, at 2:00 AM, nurse claims it's too soon for your next pain-meds shot but she'll have your doctor check the orders when s/he comes in the morning... well, you can Suffer or Act. S/he's probably lying and thinks s/he can manage you into having a stiff upper lip and not bothering him/her. She probably does have wide discretion about the timing. Explain, "That's alright, I understand you have to follow orders. I'll just phone the doctor at home and ask him/her to change the orders." Odds on, nurse will be at your bedside with the syringe before you turn off the call button. But do be prepared to make the phone call...if you're up suffering at 2:00 AM just because doctor wrote inadequate orders, why in hell should the doctor sleep comfortably? ══════════════════════════════════════════════════════════════════ Rule 9 - Dealing with staff which is determined to punish you for balking or other non-compliance or their own power-trip viciousness. This one is harder for many people. Do not give up protecting yourself from fear of reprisal. This fear is a primary reason people fail to sisoma. You will only complain when you feel your life/health is in danger. And when you do feel your life/health is in danger, you must complain. Who else will? You do intend to survive this medical treatment, don't you? Look, you've already proven you are a wonderful person (see Rule 5) so your complaint about the one evil nurse on the ward should be taken seriously. Have the nursing supervisor come down to your room (or better, ask for an appointment, explain that you'll go to his/her office - the nursing supervisor will show up at your bedside very quickly, deathly afraid you'll find out where s/he hangs out.) Do not under any circumstances discuss what you want to see him/her about with lesser staff. After all, that's why you asked for the supervisor and not the electrician. Have a frank, reasonable, non-whining, non-carping discussion with this busy executive. Explain that you've already tried to deal with this without bothering him/her. If you cannot document or prove your complaint, simply ask that the offending nurse be reassigned. You should not have to be in the care of someone you don't trust or with whom you are seriously uncomfortable. (If the main reason you're uncomfortable with the nurse is some form of xenophobia, ask for the on-duty psychiatrist, not the nursing supervisor.) You are the customer in the hospital, not some petitioner pleading for a drop of kindness. Demand reasonable service. This is especially important in the UK. Americans are more likely to complain but UKans are used to being managed. But all the more, UKans, remember that you are paying in your taxes for medical service - it is not being doled out to you. AND, your life is at stake. Over the years we've fired two doctors, had one nurse fired, two transferred to less sensitive wards and three reassigned to other patients. Not many in so many years but vital in the event. Oddly, the remaining nurses always expressed pleasure and relief that they did not have to work anymore with those rotten apples that were moved. Right is right. ══════════════════════════════════════════════════════════════════ Rule 10 - Read your chart. Have the doctor note on your chart that you may read the chart daily. (See Rule 1) Your entire life and treatment are in there. You need not understand everything in the chart. Staff's perception that you might understand it is vital, however. They have to log everything - if you can access what they're doing/not doing to you then their freedom to casually screw-up is greatly diminished. (There's an argument that screw-ups will, therefore, be less likely to be charted. It was actually the subject of an amendment to the Florida Constitution in 2004. No, most people - other than doctors - feel open access is safer.) Some things to look out for which: · Has doctor written all your orders (drugs, etc) correctly, in the correct dosage and times per day? (Learn the meaning of QD, BID, TID, QID.) · Did you, in fact, receive all the doses you were prescribed? Were they the right drugs? (Some years back, a dumb-ass, smug, religious nurse decided Ancient Spouse didn't really need all that pain med and slipped in a placebo. AND charted it. She not only had no authority to do that, but Doctor (on Ancient Spouse's instruction) had written "Do not placebo" on the chart. That was the one that got fired. If Ancient Spouse hadn't read the chart and complained to the nursing supervisor, massive pain would have continued. Placeboes have little effect with chronic pain.) · Is the procedure you are expecting scheduled? · Is some procedure you are not expecting and don't need/want scheduled? Feel free to refuse such procedures unless a satisfactory (not glib) explanation is given. · Eyeball all lab work. Ask the doctor if that cholesterol level of 410 is normal. These days the lab results give out-of-range High and Low readings right on them - no skill needed. But interpreting all that is a professional's job. Ask the "resource person," the doctor. (See Rule 13) · Carefully check that your medical history is entered correctly. Your teenage acne will be viewed differently if entered as leprosy. Be sure your sex and body weight are correct. Some genius will be prescribing medicine based solely on your chart. Nurses, especially US ones, will likely follow orders, not common sense. In most hospitals staff will hysterically resist your access to the chart but press hard on this one. They have no right to maintain secret files on you and you, certainly, are the most interested party involved in matters on the chart. ══════════════════════════════════════════════════════════════════ Rule 11 - "Own" your room or ward area. This deals with a standard ploy in business, institutions, etc. to create "status." You know, the old gag of the hiring interviewer or executive having a higher & much bigger desk/chair than the interviewee. Even most folk musicians work from a stage to establish who's in charge. In the hospital you are a room number, a piece of meat to be managed - lacking any individual personality, identity or status. Therefore, lacking Power. You must reverse this from day one, minute one. You must establish yourself as a personality - as an entity, not an object to be "treated" - not a piece of wood to be worked on. At this point you should be neither a positive nor a negative personality. Neither ingratiating nor threatening. Pleasant, polite and slightly aloof would do. As soon as you are "settled into bed" the nurse's interview routine begins. Do not undress until you carry out these next steps. (Alternatively, CR could do them while you undress and appear to be compliant - but CR must move busily about the room, leaving no convenient space for invading staff.) You must fully own the room before they are allowed to work on you. Deliberately and efficiently "dress" your space and claim it as your own territory. We bring in a 7-foot, well-made artificial palm tree. We bring posters of our choosing and tape them to every wall & door (low-tack tape so it doesn't tear the wall paper/paint on removal) and, especially, cover over any standardized pictures/decorations the hospital provided. We bring a brightly colored bed spread and personal PJs and robe. (Use common sense - these may come in contact with blood, vomit or worse.) An electric fan is nice, a radio (ear phones) and books. Don't bring anything you don't want stolen so that means use the old guitar and a cheap radio. I'd bring our own bed and dresser if I could. Absolutely not even one fucking flower is allowed in your space. Teddy bears are allowed for elderly men only. (Pre-prepare a "story" about it.) A ward is a bit harder, of course, but do what you can. Probably a poster or two, certainly bed spread and PJs. Maybe some lightweight hangings from the privacy track. Cloth cover for the side table. Bring your own lamp. Your goal is to establish yourself as a unique individual into whose realm medical staff enter respectfully. This will follow automatically if they (symbolically) move "out of the hospital and into your home." This is no idle ploy. It is a vital stratagem to: 1) Turn you from That which is Managed into S/he that Manages; 2) Achieve a primary goal as set out in Rule 12; 3) Make you feel better & more comfortable and that's a good enough reason. --- Rule 11a - Carefully consider your words and attitude in your first nursely interview. It may be that this occurs before you are settled in and the room is properly dressed. You have just arrived and cannot yet control all aspects, after all. You or CR should continue dressing the room while you answer in a confident, friendly and respectful manner. Your maximum personality should be turned on without a trace of arrogance or impropriety. Try to give answers that will benefit your treatment, not necessarily those they want. Still, it's rarely beneficial to falsify your medical history. This is your first and critical opportunity to begin to become an equal partner in your treatment. Before Nurse leaves, be sure to turn the interview into a peer-level conversation. Ask personal but non-threatening questions about him/her. This will stun Nurse who is accustomed to patients concerned only with themselves. Notice anything about Nurse - jewelry, nursing school insignia, accent - and compliment this and ask about it briefly. Having had an opportunity to talk about him/herself, Nurse will believe you are a wonderful conversationalist, a fine person and may well mention this to other nurses. ══════════════════════════════════════════════════════════════════ Rule 12 - Having created an Environment, add enhancements that serve to awaken personnel on entering your space. Medical staff run 92% on automatic. They've seen a thousand cases "just like yours" and will see a dozen more before their shift ends. They are automatons running on programs; spewing Cures for Illnesses, ordering specific Tests for specific Symptoms. Mostly this works efficiently. But having decided it would probably be nice to sisoma (else why have you wasted your time reading this?), you may be comfortable with an automaton treating your cut finger but not your 4-day piercing pain at the base of your skull. So you want to press the Manual Drive button on staff. By the way, this applies to all staff - Janitorial should really clean up the dried vomit in the shower - Catering should not bring you weevil-filled cereal - Engineering should look at the frayed electrical wires next to the oxygen tap. Lots of workers in hospital can kill you, not just doctors. You could wake them with a two-by-four to the side of the head but Ancient Spouse strongly feels this will not improve your treatment, overall. So something more subtle. Your space is already a pleasant environment that staff enjoy entering to get away from the hospital. But you don't want them too relaxed, you want them sharp, alert - awake. You must fully startle them but in a pleasing, even amusing fashion. It is preferred to let the room's environment accomplish this rather than coming verbally from you. (Well, I suppose you could greet each staffer with a hysterically funny joke but you'd need professional writers to keep up the pace. Singing or playing guitar would do nicely but immediately stop, put it aside and give full attention to the entering staffer. These are "active" methods that must be continuous. Clearly, "passive" methods are easier and more efficient.) I'm really thinking of additional touches to the space. You need several of these since the sleepwalking staffer will miss the first one(s). Further, as staff may become inured to them, you may need to bring enough startlers to rotate them every few days. Imagination and humor count and you should, of course, have a "reasonable" explanation available for having each item (ie, other than the real one.) Just "decorations I like" would do but take the opportunity to discuss in detail if staffers want to chat about it. Again, these must be discovered naturally by staff, never pointed out by you. OK, some examples we use: · A brightly painted, tribal Indonesian hand-carved wooden flying frog spirit. I hang it from the privacy curtain track. · Also hanging, a string of seven fresh whole garlic. (Lately, I just "string" them on a wire clothes hanger - much easier.) The explanation is that these guard against evil spirits and doctors that may attack when I, the CR, am not there. Deadpan and immediately moving to another topic. Actually not far off the truth, I thought of the garlic one hospitalization when I had to be away a few days and was concerned about leaving Ancient Spouse in the evil clutches. It seemed to work. · A large, realistic rubber tarantula that hides in the tree. Ancient Spouse moves it to different branches several times daily. · My favorite - three mouse traps, set and on the floor in plain view. They were excellent startlers but it took three days for the real fun. Finally, a consulting doctor freaked altogether and screamed, "But we don't have mice in this hospital!" Fully prepped and with total coolth, Ancient Spouse replied, "Not now!" Sadly, a cleaning lady got brilliantly curious, poked a finger at the rocker and got SNAPPED. Ancient Spouse declared they must go but I'm thinking bear trap next time. · Wear highly unusual (not flashy) effects or jewelry. · A lava lamp? No, probably not. · Recent reputable medical journals, especially in your illness. · A recent Playboy/Playgirl. · A large poster of The Scream (probably to be avoided on the oncology ward, though.) --- Rule 12a - Post signs as needed. We had an epiphany in Scotland: Signs trump Rules. No one dares disobey signs. They are assumed to have been placed on the wall by God and cannot be altered. You only need point to them to exact instant obedience. They can be utterly outrageous and you can have great fun with this notion. Think about it. But for our current purpose, fun should not supercede life-saving. I wouldn't put up a "no breathing" sign at this time. Use "Please observe a maximum of 5 visitors." "No visitors." "Do not waken before 8:00 AM." Whatever. We need to, and do, post "Photosensitive Patient, Do Not Use Fluorescent Lighting, Thank You." Hospitals love high UV lights but they are toxic to some people. Staff really wants to turn them on - Ancient Spouse simply points to the Sign. (I usually disable the fluorescent lights, anyway.) ══════════════════════════════════════════════════════════════════ Rule 13 - Take measures to corral your doctor and discuss your case. Before you were incarcerated, you may have made effective arrangements with your doctor for regular in-patient consults. This probably didn't work. So... Take note what time the doctor visits your room. Ask your nurse when this will be, ask Nurse to wake you when Doctor comes on the ward and (first time or occasionally) have Nurse write on the front of your chart, "Doctor, patient has questions." Then set your alarm clock early enough that you have time to piss, freshen up, find your pen and paper and prepared list of specific questions and practice smiling. The doctor gets paid either to have you on his/her register (capitation) or to record on your chart that a visit to you was made. A "visit" is usually less than one second at 6:00 AM. Doctor takes a quick eye-bat into the room to see if you are alive. S/he doesn't really care if you are alive but can get in trouble submitting bills for your care after you've been buried. S/he certainly does not get paid to spend any time with you. But you do want to discuss your case with the doctor as often as you feel necessary. (To be fair, keep it short and to the point - don't chat.) You will need some hunting and tracking skills here. Listen for the doctor at the nurses' desk or in the hall. Keep a steady eye on the door. Keep your wits and reflexes sharp. Remember, you only have 1/2 second to call, "DOCTOR!" before his/her head disappears. Don't be overly discouraged if you miss him/her on the first day. Tomorrow you should be up a little earlier, be sharper, wait or have your CR wait by the door, call out DOCTOR!. ══════════════════════════════════════════════════════════════════ Rule 14 - Make a list of items to bring to hospital and of phone calls to make. And keep it where you can find it. We keep a copy on the computer and another in a pocket of the suitcase we generally take. Some examples: · A typed list (and copy) of current and occasional medications, both prescription and OTC. One to keep and one to give the nurse. Just because you are incarcerated for a broken finger, why should you have to wait until morning for Doctor to order your insulin? Include each drug's full name, dosage, frequency (eg, BID) and time of day taken. If the list looks official it will become official. Make sure the doctor approves it. This becomes part of your orders. · Vital: At least a two-day "private" supply of any drugs you actually need. · PJs (2 sets). · Pillow (bright, designed slip cover). · Bedspread. · Taser. · Fried fatback snacks. · Slippers. · Reading lamp · Whiskey in an after-shave or perfume bottle. · Etc, etc. ══════════════════════════════════════════════════════════════════ Rule 15 - Carefully select and make a serious attempt to ally yourself with your own doctor, especially before hospitalization. Get real here. You have no interest in Doctor's ethnicity, bedside manner or body odor. Doctor's ability to sing folk songs might help but is not essential. It should also be clear that you must find a doctor with whom you can communicate; Who seems willing to work with you, not just on you; Who has the patience to listen to your account of your medical problem (See reference to Howard B. Beckman, M.D, below); Who has the courage to permit you to sisoma. (Only parenthetically, I'll note that of course you check the doctor's credentials, malpractice suits, administrative admonitions, how often s/he's changed jobs - easy enough on the Web, at least in the US.) Just how you turn the doctor into an ally in your treatment is up to you. There are no easy Universals here any more than in other complex life situations. As in Rules 11 and 12, you must first wake up the doctor and become a Person, not a case number. Being nice won't help. Be...an adult, confidential and confident and reasonably knowledgeable of your medical condition. But do not hire the doctor unless you feel you have a meeting of the minds. You must fully discuss hospital orders to be written, especially (if indicated) pain meds, understand each and agree in detail on each. You should, as always, have your up-to-date meds list handy (Rule 14) and agree on authority to read the chart (Rule 10). You cannot leave the doctor's office until you are satisfied about these. Understand your proposed treatment plan before agreeing to any part of it. Ask questions. Ask more questions. In US law you must give informed consent. Courage is the most important criterion we seek when hiring a new doctor. Intelligence next, of course, but it's useless without courage. That is, the courage to treat you aggressively if lesser treatment fails - to believe what you describe about your symptoms may be true even if contrary to "most cases" - to try unusual, non-approved or even illegal treatment where there is good evidence (not just a panicked guess) that it might work. Medical personnel with the courage to buck the system (and save your life) are just too rare to have any confidence that your own arbitrarily assigned doctor/nurse will happen to be that way. And, if you feel you know more about your disease, as it affects you, than the doctor, get up and leave and find a new doctor. Always remember that the profession has been honing its sales skills for thousands of years. "Of course this surgery will help!" "The pain will pass in a moment." "No, there are no newer treatments that might be better." "It's all in your head." "You're probably addicted to the pain meds." And finally, "No, there's nothing we can do about your problem, but we will put you in touch with a support group that will help you come to terms with it." You are expected to believe them. The Health Care Delivery System works smoother that way. But you suffer/die. ══════════════════════════════════════════════════════════════════ Rule 16 - Do trust your instincts. In general, but for purposes of this rule, trust the message when your body tells you "Something Is Wrong!" Chances are that Something Is Wrong! For example, "I hurt." Look, pain sucks. Yosarian insisted pain was one of the dumbest things God ever thought of. Well, he was answered, that's God's way of telling you something is wrong. Yeah, but wouldn't a blinking light on your forehead be smarter? Sure it would, but for now we only have dumb and dumber symptoms. Ok, say, your belly puffs up and turns bright, shiny purple one day. You tell the doctor but s/he doesn't know what to make of it, says, "Hmmm, Interesting," and goes on to unrelated stuff and orders standard blood work. Doctor doesn't understand the problem and just ignores it. If the techs find some nice germs and run "sensitivity" tests (standard to match bugs to effective anti-bugs, and for which you always ask) and the computer print-out says 17th generation antibiotic at $100 per pill for two weeks is just the thing...well, that's fine for the germ but what about your goddam purple belly? You know you have a Symptom. Demand the doctor Do Something! Doctor might consult someone, ask his cleaning lady or even, God forbid, do some research. Well, s/he probably won't so here's the URL for Medline: MedLine. Go look yourself. You have a symptom. Believe your body's scream that something is wrong. By the way, I wasn't going to tell "war stories" since I know you have plenty of your own but the purple belly thing happens to be a true. That reminds me of one of my own. I've had an occasionally recurring arthritic-type pain in my left elbow since infancy. The doctor once recommended a hot compress and it helped a little but not much. Our cleaning lady said hot was wrong - I should use a cold compress. That worked much better and gave considerable relief. Next time I saw the doctor, I complained that my cleaning lady had given me much better advice than he. "Really?" he said. "Cold? And your cleaning lady told you that?" "Yes," I sneered. "Odd," he replied. His cleaning lady had told him hot! ══════════════════════════════════════════════════════════════════ Rule 17 - Become a professional and systematic patient. This is straightforward. Keep well-organized copies of all your records and images. Document dates, doctor's names and diagnoses. This will provide your "base line" - show exactly how your problems have changed/progressed over time. Further, you will constantly be asked for this material and when you can't remember, eg, the name of the hospital that took the CAT scan of your earlobe ten years ago, staff is free to pretend you never had an earlobe problem before. You are vastly more able to pull together your history, diagnoses and related problems (ie, only you know that you always have stomach ulcer problems three days after your left eye waters - might as well instruct your doctor to order the stomach meds when the eye symptoms start. Obviously, you tell Doctor you already have ulcer symptoms.) No doctor can realistically correlate all this, even if s/he did read your history or chart and even if s/he did patiently listen to your complaint. And you can bet your bippy s/he didn't do either. (See reference to Howard B. Beckman, M.D, infra.) ══════════════════════════════════════════════════════════════════ Rule 18 - (Re)read Catch-22. ══════════════════════════════════════════════════════════════════ Miscellaneous coping aids: When medical staff reply to your question about treatment, "That's a medical problem, don't worry your head about it, dear," you say, "I'm sure you'd feel the same if you were in my position, wouldn't you?" (As any salesperson knows, that "wouldn't you" is the important part of your response. You cannot say anything else until you have an answer to that question...) Now shut up, stare staffer in the eye and wait. After no less time than 5 minutes: "Well, wouldn't you?" If the answer is 'No' then you haven't connected with this person yet. You should persist in this vein. Do not switch to some argumentative/belligerent whine such as "Well, I have the right..." Much better, say, "Honestly, if you were a patient (GOOD GOD, Forbid!) wouldn't you want to know?" And wait for an answer. This is a killer ploy and also works in non-medical situations with even the most staid civil servants. Obviously, it is an attempt to reach the residual humanity inside the automaton. On the other hand, learn to recognize glib, facile, managing explanations and reject them. Very often they are immediately followed by staff's Sales Closing Question and then the Assumed Close, eg: They say, "So let's get our feet up in the stirrups, (nurse takes hold of your foot here, not her own) shall we?" (See Rule 3) · They: "That's the way we do it here." (You: "Is that a hospital rule?" Nurse's answer will always be "Yes." See Rule 3a.) · They: "I'm sure Doctor wouldn't have ordered decapitation unless it were in your best interest." (You: "Probably not, but...") · They: "Well, suppose everyone did it that way?" (My favorite response to this toughie is still Yosarian's, "Well then, I'd be a fool if I didn't do it too, wouldn't I?" Then, without allowing time for response, immediately repeat your demand/request.) ══════════════════════════════════════════════════════════════════ Some considerations: Posit that you carefully study and put into practice all These Rules and keep in mind that These Rules must be used flexibly enough to meet the ever-changing, ever-creative, ever-sinister hospital practices designed to prevent sisoma (that is, designed to ensure the smooth running of the institution/office). Posit that you are not an intimidated sheep, too wimpy, lazy and foolish to take charge of your own care. Posit that you are not too sick to fight or, if you are, that you do have an effective CR. Posit that you are mature and thoughtful; that you know the difference between assertiveness and aggression; that you are neither a whiner nor arrogant and egoistic. Then, will these Rules help? And if they do help, won't the effectiveness be diluted and diminished by all those people playing the same strategy game? (I'm picturing pre-packaged 'Individuality Kits' on sale at the hospital gift shop. Yike!) No, probably not, to either question. Happily, most people don't need These Rules - they spend little time in medical care and the result is usually either a quick cure or an early death. For the longer-term patient, very few will really believe/understand all this is meaningful until it's already too late and they have failed to sisoma. Others "just can't" and they will also fail to sisoma. Of course, many people may serendipitously survive years, ignoring these Rules altogether and just doing what the staff tells them to. It can happen. But for those entering the clutches of the medical profession - whether for a simple short-term problem or, especially, for those with chronic illnesses - who do intend to sisoma, we know that professionalism as patients is as vital to success as it is to architects, plumbers, baseball players or folk singers. We hope that you are lucky enough to survive long enough to realize there is something wrong in the way you are usually being managed. We hope these Rules will offer some useful guidance. You might muse: Ok, Now that you've studied all these Rules, do they actually work? Oh, yes. They sure do. I've seen Ancient Spouse survive death attempts by medical staff too many times; avoid or relieve pain-in-the-excrutia too many times; nullify doctor-ordered pointless-but-unpleasant medical procedures too many times; acquire effective-but-not-medically-typical (or even authorized) treatment too many times; awaken somnambulistic staff too many times; survive prognosis of "terminal" too many times (and that means more than once); in short, to sisoma too many times to leave the least doubt. Hospitals and modern doctor offices are very complex operations. They lack the safety and quality control of, say, a glue factory. Most attempts to kill you are never even noticed, successful or not. There are Lots of scary statistics out there and I'll briefly mention just a few, most based on but a 1/4-second Goggle search. First, here is a link to some good thoughts in an ad for Medical Malpractice Attorneys. It lists 34,567 "Common Hospital Errors that can Result in a Medical Malpractice Case." Clicky Minnesota hospitals performed surgery on the wrong body parts, gave the wrong medications or made other mistakes that endangered patients 99 times in a 15-month period starting in the summer of 2003, according to the first such report in the nation. Clicky Reuters: July 28, 2004 - WASHINGTON - As many as 195,000 people a year could be dying in U.S. hospitals because of easily prevented errors...Colorado-based Health Grades Inc. said its data covers all 50 states and is more up-to-date than a 1999 study from the Institute of Medicine that said 98,000 people a year die from medical errors... That would make hospital medical errors the sixth-leading cause of death in the United States. Clicky Forbes Magazine examined what kills billionaires. Seems billionaires (all male in the study) only average 3.5 years longer life than the average for American males. Considering all the assumed advantages of billionaires' lives one might suppose would contribute to a much greater life expectancy, 3.5 years ain't much. That is, assumed better food, better medical care, less hazardous living and work environment, etc. meant little. In surveying a great deal of medical and statistical data, Forbes notes: Since most of what kills Americans today is chronic disease, health literacy may, in fact, be a key to longevity. Understanding and monitoring risk factors for the major conditions that predispose us to death--heart disease, cancer, diabetes, obesity, high blood pressure--requires a considerable amount of awareness, discipline and foresight. Clicky. (In other words, just observing about 20% of our sisoma rules gave them 3.5 years. It's the activist's mental approach to disease and medicine that counts.) A key fact to remember in order to sisoma: In 1984, Howard B. Beckman, M.D., and Richard M. Frankel, Ph.D., reported in Annals of Internal Medicine that, on average, doctors interrupt patients only 18 seconds after they begin to speak. We've discussed this finding with several doctors. With some embarrassment they admitted it was true but then listened to Ancient Spouse far longer than 18 seconds. ══════════════════════════════════════════════════════════════════ If I've given the impression that I believe all medical personnel are evil, that's Good. You will sisoma better if you assume they are. But, no, I don't believe that for one moment. Intelligent, courageous physicians and nurses have often salvaged Ancient Spouse. We do believe, however, that medical staff everywhere is caught up in the Kafkaesque system of Health Care Delivery. The net result is that most come to act in a manner indistinguishable from Evil. (They have "good" career reasons to act that way that I needn't go into here.) Your job as patient-determined-to-sisoma is to extract the nearly inextricable...to separate out the Health Worker's vestigial humanity and deal only persistently with that aspect! You want to: A) establish yourself as a Real Person, not a bed number, (by standing out in a positive and pleasant manner.) An indicator of success here would be to overhear a nurse say, "I'm taking the Ebola serum to Joe" rather than "It's time for you to take meds to bed 666..." and you want to: B) be seen as a Potential Threat (by reading your chart, having a witness, etc). Accomplish these and the carrot/stick scenario will come to exist and your chance to sisoma will dramatically improve. If all this nevertheless fails and you are uncomfortable with failure to communicate and simply do not believe your best interest is being served, GET OUT! As above, trust your instincts - Get out! Ask nurse for your clothes and a Release AMA (against medical advice) form and Get out! Your doctor will suddenly appear with staff to explain why your decapitation surgery is really the best thing even if you can't understand why. Your only consideration at this point is your final chance to communicate and gain control of your treatment. If you are still not satisfied, sign the damned AMA, wrap your gown around your ass and Get out! What are they gonna do, kidnap you? Get out! ══════════════════════════════════════════════════════════════════ And, at last (really): Realize that the forgoing is from my perspective; it's the only perspective I happen to have. I have certainly been closely involved and have some marginal training in observing social interaction but the patient's position is drastically different from the CR's. It is the patient who must put all this into practice, creatively and endeavor to persevere. The patient must establish rapport with staff, study his/her illness and intimately participate in its treatment. And suffer from any lapses, all the while suffering from the significant medical problem. I find it hard to objectively understand - say, waking at 2:00 AM in pain (the shot is an hour and a half late) and nauseous and noting the nurse about to finally give a shot. You have three seconds to wake up, rise above the pain and nausea, remember the nurse's name (it's ok to ask if you forgot, but use it), ask what the shot is, how much, and take note if, eg, an IV medication is about to be given subcutaneously. And don't neglect to note the time so you know when you're allowed your next shot. Sure, it's hard. And harder as you age and ail. And harder in some cases where these Rules may be awkward to apply - say, if you are perceived by staff to have even less prestige than most patients because you are poor or blind or deaf or three and one-half feet tall with a squeaky voice. I can only admire those determined to sisoma. I hope I have the same courage when my turn comes. Now, just to end this on the up-beat, know that if you do sisoma over the long haul and are still dealing with chronic, debilitating disease - something fun like multiple sclerosis or muscular dystrophy or systemic lupus erythematosus or any other progressive or immobilizing possibility. yet hang in there a few decades longer than life expectancy (much more likely if you follow the Rules) you must still fight a losing battle called debilitation. You might come to wonder if it's all been worth it. I don't refer to some nice, clean business like cancer that usually either kills you or lets you recover. I refer to those long-term torments from which you slowly get worse year by year, physically, and likely mentally, too. Well, has it been worth it? Will it continue to be? Have you had enough additional fun in your extra years of life? Are other options more attractive? That's up to you, I certainly have no insight or advice or suggestions in the matter. I'll be around to help out whichever route you choose to take. But now you know why the Schiavo case brought to mind the implications of Surviving In Spite Of Medical Attention. Ah, well. Time for me to go have a beer and sing some cheery Scottish ballad. Thanks for your time, Abby ══════════════════════════════════════════════════════════════════ |
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25 Jun 05 - 04:30 PM (#1509667) Subject: RE: BS: SISOMA (very long) From: Amos Abby, it's just brilliant. I suggest you publish it. A |
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25 Jun 05 - 04:38 PM (#1509670) Subject: RE: BS: SISOMA (very long) From: gnu Ain't that the truth! I spent a couple of days in the hospital after a minor slice and dice recently and the above rings, unfortunately, rather true. From the get go. I could not reach the call button when I woke up... the assholes had it tied OUT OF REACH. Twas only when I got hold of the divider curtains and began to try to rip them from the ceiling that I got noticed. I only spent two days there but it would take me three days to tell all the stories of incompetence and, seriously, downright nastiness of the staff. And, it continued during the recouperation period after I was sent home... enough... I just want to forget about it. |
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25 Jun 05 - 04:42 PM (#1509673) Subject: RE: BS: SISOMA (very long) From: gnu BTW, I am a Canuck... medicare. More like 'who cares'. |
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25 Jun 05 - 04:58 PM (#1509681) Subject: RE: BS: SISOMA (very long) From: Azizi Thank you, Abby. This is excellant and so very important! I agree with Amos' post. Publish this please!!! |
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25 Jun 05 - 05:11 PM (#1509688) Subject: RE: BS: SISOMA (very long) From: katlaughing Extremely well-written, Abby. I agree with Amos, it should be published. I know Spaw has shared a bunch of similar experiences with us. Having just had my aortic valve replaced, though, I am pleased to report most of it did not hold true for me. I had a Dream Team of docs, only had one bad apple nurse, whom I imediately banished from my room/care forever, and one exercise-drill sgt. who was banished, also. Of course there were some problems, surgeons being what they are, they really aren't very interested in you after the fact; thankfully their nurses, PA's and others are more personable and for the most part, good listeners. I have found the best docs and other personal are usually osteopaths, who do know the value of treating wholisitcally. My cardiologist and his staff certainly do. Things I would add: demand they provide you with a bathroom which has a toilet at a comfortable height! The one I had, in a private room was high, for this 5'2" green-eyed, faded-redhead; probably to accomodate those in wheelchairs. To get ANY leverage for mooving things along, if you know what I mean, I had to request a footstool, as my feet did not reach the floor! A handy voice-activated recorder. When one is drugged, groggy and there is no advocate there, it's best to tape the instructions or explanations being given for whatever is going on! That way, when one has recovered their wits they may make sense of it...or, maybe not?! There was something else I was going to list, but can't remember. When I do, I'll post it. I DO feel I am very fortunate to live where there are two very highly rated (backed by statistics) hospitals and I am grateful for the many more years of life I've gained since my stay this May.:-) All the best to you and Ancient Spouse. I am really glad you are there for her. An Advocate is THE most important thing a patient needs!! kat |
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25 Jun 05 - 08:44 PM (#1509827) Subject: RE: BS: SISOMA (very long) From: Ebbie Excellent, Abby Sale. We've all been there in one role or another. Maybe the Mudcat could have a permanent folder/thread created on SURVIVAL, with all its ramifications. After all, we can't make music if we're dead. Joe? |
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25 Jun 05 - 09:37 PM (#1509886) Subject: RE: BS: SISOMA (very long) From: gnu Seconded!! |
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25 Jun 05 - 10:06 PM (#1509899) Subject: RE: BS: SISOMA (very long) From: mack/misophist Any good doctor will tell you "We're not gods." |
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25 Jun 05 - 10:22 PM (#1509909) Subject: RE: BS: SISOMA (very long) From: frogprince Terrific, Abbey: But my wife and I were reading this together, and we both cracked up at: "A brightly painted, tribal Indonesian hand-carved wooden flying frog spirit. I hang it from the privacy curtain track." We have just exactly that, quite literally, hanging near the piano. We'll have to remember to take it along if one of us is hospitalized. |
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25 Jun 05 - 10:28 PM (#1509912) Subject: RE: BS: SISOMA (very long) From: Sorcha Yes, I agree, but ya know, I've never ever had a truly horrible experience in hospital. But, you DO have to be your own advocate if you can. If not, delegate. |
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26 Jun 05 - 10:03 AM (#1510225) Subject: RE: BS: SISOMA (very long) From: Abby Sale Thanks for kind words. I'll be more specific in a day or two. I'm pleased others have learned the primary goal for themselves (and thus sisomaed). frogprince: Please do remember. It has worked well on both fronts so far - practical and mystical - did you notice what it has at the throat? I'm guessing this frog is a traditional life-promoting spirit. |
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26 Jun 05 - 11:58 AM (#1510309) Subject: RE: BS: SISOMA (very long) From: GUEST If one of the CR's can arrive in a 1,000 eruo suit - it is very helpful. Staff automatically assume it is a solicitor. Let them believe. |
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29 Jun 05 - 09:17 AM (#1512423) Subject: RE: BS: SISOMA (very long) From: Abby Sale The only thing that disturbs me is: Any good doctor will tell you "We're not gods." because, in practice, they demand an image of irrefutability - so, ok, not gods because they agree they are not omniscient so they won't hold themselves accountable for failures. But certainly "the last word." They will, they claim, perform at the very best of known science so you dare not question or refute them. While there are many fine physicians, there are many sanctimonious, hypocritical and especially greedy ones. One clue is (as implied in the piece) how many seconds they listen to your explanation & complaint and opinion. The average is 18. Kat, your story is the best - competent care and successful outcome. That's all one wants. As it happens, we've had much of our best care from osteopaths as well. Generally I don't discriminate, though, as I feel the training & human genius/failings about the same as with MDs. Because of the complexity of hospital care, it's possible (I don't even insist "likely") that many mistakes were made during your stay. Obviously and happily, innocuous ones. Perhaps your pain was 5% worse than it need have been or your illness lasted 4% longer or your food 12% older or exposed to more ambient germs than it should have been. You can't guard against everything but it's surprising how much you catch when you look. You demanded material to make the room convenient to you. Excellent! "Up with crap we shall not put." Your idea of a tape recorder is a fine idea and I will add that and your reasons to Sisoma at Rule 14 - items to bring. -------------- |
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29 Jun 05 - 09:17 AM (#1512424) Subject: RE: BS: SISOMA (very long) From: Abby Sale As I wrote, most people will not really benefit from all this for various reasons - most of the reason to write all this is to organize our own thoughts and Be Prepared. But if the proverbial one life (or one sanity) can be saved by putting it all in front of others, well, we hope it does some good. As it turns out, Ancient Spouse goes to Duke Hospital, North Carolina in a month for some spinal slice & dice. Here's a case of seeking the most competant but one senses a certain arrogance (though not impolite or unfriendly) in the entire facility. Now comes the test to apply the Rules in a new and Foreign setting. Thanks for the compliments to you what did so. I wouldn't mind publishing this somewhere but I haven't a clue where. I doubt the Journal of the AMA woould be much interested. |
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29 Jun 05 - 12:56 PM (#1512560) Subject: RE: BS: SISOMA (very long) From: GUEST,Paul Burke Sorry to hear the USA is as bad as over here. NHS doctors murdered (or at least, shortened the lives of) two of my friends in the past 18 months. One was stable (and had been for 8 years) on his medication for lymphoma. Then a change of address, a new doctor wanted to shove his oar in, changed the medication, liver damage and dead within 3 months. The second, a radiologist, had severe gut pains. The doctor diagnosed irritable bowel syndrome, bog off, don't bother me, I'm busy. She sneaked herself a bowel scan (self administered) and showed it to him. That turned him even more hostile- how DARE she have a disease without his diagnosis- wouldn't refer her to a specialist. Eventually managed to change doctors, who referred her. Specialist decided it was Somebody's Obsure Syndrome and not life threatening. Treated her for it, until 3 months ago she collapsed, taken to hospital, they did tests, terminal bowel cancer, too late to operate, chemotherapy no use. Saved a lot of money- she's dead too now. |
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30 Jun 05 - 08:42 AM (#1513236) Subject: RE: BS: SISOMA (very long) From: Abby Sale Paul; Very sorry to read this. Thanks for posting it - it must have been hard. Sometimes there's just nothing you can do about things. |
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30 Jun 05 - 11:15 AM (#1513324) Subject: RE: BS: SISOMA (very long) From: GUEST,kat coming in the back door Oh, Paul, I am very sorry to hear that, too. My condolences. Abby, thanks. I am sure you are right. Another thing I did was take a framed picture collage of my family with my "slogan" "In the Pink...On the Road to Wellness" printed at the top. I had it next to my bed where I would see it whenever I needed/wanted to. When they'd come in to ask me how I was, I tried to remember, despite pain or whatever, to say "IN the Pink!" They didn't know how to respond, but by the time I left they all seemed to think it was kind of neat AND the cardiologist got a kick out of hearing about all of my girlfriends who wore pink underwear the day of my surgery, as well as what some of the Mudcatter guys did in the interest of Pink that day!**bg** Sometimes, I think a doc needs a bit of arrogance, esp. a surgeon. NOT towards the patient, in a condescending way, but in general about what they do as I think it signals a sort of supreme confidence, which, let's face it, one would need if one is cut open someone's sternum, spread their ribs, slice open their heart and work on it. My surgeon was not so much arrogant and supremely confident with a touch of kindly paternalism, which usually pisses me off, but in the instance I was glad of it and his reputation for being one of the best. I'm just glad to know they didn't leave any instruments, etc. behind! My best to Ancient Spouse and you in the next round. Please keep us informed and maybe you should consider and advocate for yourself, or at least someone to vent to during your championing for AS...of course, Mudcat is a good palce to do that, but I hope you have someone you can rant to by phone or in person, too...a willing friend, etc. luvyakat |