bad medicine or bad science or just plain bad

Allow me to preface this all by saying that I am coming out of (I hope) a raging migraine.  This is relevant because when I’m migrained, I find that I tend to be either hyperverbal or nearly aphasic.  This migraine and epimigraine period, I’ve found I’m vacillating between times when all I can do is utter sentences like “it’s in the….uh….thing…thingy, over uh by the um, the uh…the table, thing, no the thingy…with doors…cabinet thing.  It’s black…it’s in there,” and periods when I can have a discussion with my husband on the etymology and implications (archaic usage and otherwise) of the words “conscience” vs. “conscious” while laying flat on my back on the nicely cool kitchen with my hands over my face to shield my eyes from the still for me overly bright 5 PM daylight barely seeping in at low and dim angles.  So you’re forewarned.  This may not be the easiest read.

It’s said that the practice of medicine is an art.  That would be to distinguish it from a science, or a trade I suppose, in that “art” calls on elements of talent, creativity, contextual awareness and sensitivity, humanity, flexibility or malleability.  I suppose it also evokes less articulable properties having to do with indefinable processes and validity of the idiosyncratic, lack of universal procedures, and a sort of non-decompositionality.

That said, I personally think that this is one of those increasingly unnecessary divisions that is so prevalent in how we formally classify things, entities, and processes in our world.  A high-falutin way of putting that would be a false dichotomy in (ontologic) epistemology.  My reason for saying this is that I’ve seen the poor outcomes and sometimes nearly malicious or just plain ridiculous processes in both health care provider “artists” and “scientists” – often seeming that one should have a bit more of the other.  Why the exclusionary classification?  Why is it that, it would seem, you can either find a doctor who insists on overapplication of observations from only an abundance of strictly controlled (i.e. semi-artificial), readily replicable studies to clinical practice; or a provider (doctors sometimes but usually naturopaths etc.) who over-relies on the subjective and utterly uncontrolled experiences of patients and other non-traditional providers communicated via anecdote?

Can’t we have a little give on both sides?  Why the split?  Why the rigid adherence to only one or the other?  If this were the 18th century and we were still so limited technologically that we had no way to uncover/observe truly spooky natural phenomena, I probably wouldn’t be lodging this complaint.  Well, I would likely be feeling its effects, the gut feeling that this doesn’t have to be this way but I wouldn’t have as good a grounding for the sensation of unreasonability of drawing a line down the various parts of our world and saying “this goes over here, that goes over there and never the two shall meet”.

Another and related matter that’s kicking around in my migrainous head today is an emerging pet peeve.  Doctors/providers of the former type, the “Scientist”, who practice poor methodology.  E.g. Dr. Dumbfuck.  He puts all his eggs in the basket of “tried and true” procedure and result, presumably because it was derived using sound and carefully considered scientific method.  And then our dear empiricist goes and fucks it all up by walking into a clinical encounter with an orientation which, rather than being describable as having a strong hypothesis (based on all that science) is more properly defined as walking in with a raging bias which he seeks only to confirm.

That ain’t science.  That’s faith.  And faith masquerading as science in the application of medicine is not just bad science or bad medicine.  It’s also bad, in a firmly moral sense.

wtfFriday

On Wednesday, I sent an email out at work to the faculty and staff list letting everyone know I’d be leaving early (boss lady having approved my leaving early for medical procedure) so they would know that I wouldn’t be available for student walk ins.  It’s been a busy week, with it being the 1st week of classes.  “I need to leave at 12:30”.  At 12:28, my boss walks in with a student.  I have my bags on my shoulder, am turning off the air conditioners, and am literally halfway to the door.  She stops me and asks if I have a moment to meet.  “Oh, no, I’m so sorry, I don’t.”  She looks around.  “Well can we sign up for a time to meet with you?”  “No, I do that electronically and I just signed off…” I tell her.  I give the student my card and tell him that if he emails me I would be happy to set something up for next week.  “Are you leaving?” she asks, all alarmed and taken aback.  “Yes.  At 12:30” which by that point, it was.

At 2:00, I had an appointment for an MRI of my brain (with contrast) and my “orbits”.  I’ve had an MRI of my brain before.  Twice.  Once diagnostically without contrast in 2005 and god only knows where because I tried to track it down in 2008 and I think the place closed.  And once in…oh, maybe 2004? for a friend of a friend who was doing research at Yale and desperately needed a fill in subject after one canceled on her.  I don’t mind them too much, just the laying still part.

I did mind the one yesterday.  See, the body’s “new” or at least new relative to head MRIs, trick is overheating.  And MRIs make you just an eentsy bit warm sometimes, more so if you have metal fillings, which I have.  I did NOT go in there thinking “I’ll be my metal fillings will heat up.”  No I did not.  I went in there thinking “I hope I can lie still long enough for these pictures” and “I hope my head doesn’t hurt too much while I’m in there” and “I hope the sound sensitivity isn’t too bad because these things are loud” so this wasn’t some self induced symptom set.  Believe me, I was as surprised as anyone (i.e. the techs) when I got so damned hot I felt like I was going to puke and pass out in the tube and had to come out three times before I finally said “take the headphones off, take the sheet off, take my socks off, and roll up my pants.  If that doesn’t work, I’m taking off my pants because I want to get this done.”

This god damned blew.  But minus some items of clothing (and snuggly warm headphones), I was cool enough to get through the rest of the scans including the contrast just fine.

Now I know how microwave popcorn feels.  Except minus the buttery goodness.

Ok, out into the not hurricane (I live in land of B.A.T.H.s, remember?  According to the major news outlets, we were going to get a HUGE hurricane yesterday.  It turned out to be a mild to moderate rain storm that barely registered on the head/joint pain scale).  Then home for some food then off to the PCP for the follow up on many things.

And that did not go so great.  In retrospect, I don’t think it could have gone great.  I was thinking of writing this as if it did go great and then transitioning it with a reveal, a “tada” moment where I pull away the table cloth after setting out all that fine china and silverware so nicely (in case you aren’t following my very tortured analogy here, I’m going for the settings being my expectations for my visit, which I had arranged just so).  But I decided I’m just too drained and tired and, well, yeah.  Just too pooped for that.  Overall, it was productive and that’s good.  But ugh.  It was rough.  For everyone.  Poor PCP.  Poor me.  Poor husband who was taking notes.  Poor nurse who had to stay until after nine PM (yes, you read that right) when we finally finished.  Poor lab tech who will have to make sense of this req.  Poor ambulatory care staff at the local hospital who will have to administer the IV fluids with Mg and vitamins (yes, oh god thank god finally). Poor neurologist who will get the aftershocks of this appointment in the form of “wtf am I on this CMD for? It’s not doing shit and it’s making several things worse and I had a total breakdown in PCPs office and I think this CMD probably was a part of that”.  Did I say poor me yet?

And did I say poor PCP?  My celebrex rant, triggered thusly:  he suggested a consult to ENT for the sleep thing, I asked “ok but I have to tell you, I’m a little less game on this right now.  I’ve been catching some crap from my boss about missing work and so I’m sort of trying to prioritize what I miss work for.  So would the ENT be a consult where they have really specific directions for what to do or would it be a consult where they would be like the endocrine attending, like ‘um, I’m not gonna do anything really useful right now while you have time to do anything, so I’m gonna send you to someone else who also probably won’t do anything useful, i.e. a dietician, and then I’d like to see you in two months’?”, truly, I did say that.  And he looked taken aback.  So I went on.  I need to learn to do something about that.  I apologized and explained it’s been a rough summer.  I referenced some crappy history with doctors (being told I was having seizures all through adolescence when really I was probably just fainting from hypoglycemia and no one thought to check my blood sugar), that I’d had some things happen recently that kicked that up.  He asked what.  I said the neuro’s nurse had been crusty.  He said “nurses don’t count”.  Then I told him about the celebrex thing.  And he listened.  Then he said very quietly “and here I thought I was doing a pretty good job”.  It made me feel really, really shitty.  I apologized.  But he went on.  He told me that the insurance companies play games with them.  I said I know (but the nurse didn’t even submit the authorization for a month).  He told me that it’s hard to know what it is that they want you to say.  I said I know (but she didn’t ask me what it was I took it for) and that I didn’t think to tell her what I took it for.  His manner was not accusing or angry, but defensive.  It made me, well, I suppose scared.  I thought about this alot later.  Well, honestly I’m still thinking about why it would scare me and I suppose it’s because of parents (sorry, quoting Mel Brooks, High Anxiety).

Truly though, it’s the left overs of my mother’s emotional fuckery – the constant threat that she would leave and her leaving meant leaving me, us, to the physical abuse of our father and the sexual abuse of our grandfather (who lived with us).  Not that she was exactly a champion but (a) less abuse happened in her presence and (b) she was a potential champion to me (I think, not sure about that one…still working on it).  Anyhow, sorry for that detour down psych lane, but it was/is quite relevant.  So I was/am scared by my PCPs defensive, distancing reaction to my feeling that I was “abandoned” (his words, not mine) by his office this summer wrt the celebrex and pain management.  And please keep in mind, when I talk about getting authorization for my celebrex, we’re not talking about me being unhappy in a customer service sense, it’s not the kind of let down you have when the RAM chip you ordered by mail doesn’t arrive the exact day UPS said it would – we’re talking about not having something to take for the fuckloads of pain that go with having your period when you have endometriosis on/in your rectum and growing into the walls of your uterus, growing into the ligaments holding your uterus in place.  A spot on a ureter too.  Yes, they cut it out of some of those spots (not all).  But it grows back and it’s been three years.  So this is a significant amount of pain.

I went through two periods this summer with inadequate pain control, on top of the vertigo, the headaches, the fatigue, the…everything.  There are stretches of many days of this summer that are a shaky smear of shit, blood, pain, nausea and grief.  And if you don’t know why grief, you and I are at different points in the whole being sick thing.

So.  He’s telling me basically how hard it is to be a doctor and I do feel for him, but I think it’s triggering all this “eek, he’s going to abandon me more now because I made him feel questioned/less than perfect/less than adored!” feeling and so I start crying and then just fucking SOBBING uncontrollably.

Husband, who says he can handle all this, is still sitting in his chair.  Later he tells me that he didn’t know what to do.  I tell him gently “I think that it was good that you didn’t say anything because he was clearly feeling defensive and that could have made it worse.   But I definitely could have used some comforting.  I think a physical presence would have been nice.  A touch – in the future – god I hope there isn’t a future.  But you can come over in the future and touch me.  That would be nice.”  Husband thanked me for telling him that.  He sounded sincere.  I don’t think I’m resentful for him not moving while that happened.  I hope I don’t become so.

And now, it’s Saturday.  The sun is out.  The heat has broken.  My fillings finally don’t feel hot.  I have a script for IV fluids and various things I am deficient in from the local hospital’s ambulatory care although I left rather quickly in the nine-PM hour from the PCP’s office last night and only realized as we turned onto the foggy main road that I had totally neglected to ask how to access this service.  I guess I’ll figure it out.

Well well (not not)

Here I am again.  Having taken a hiatus to find a real job in a really bad job market, I’m back.  I’m working full time – sometimes a 40 hour week, sometimes less, sometimes more.  My boss is insane (mantra is “she’s only interim….she’s only interim”) and had, within my first 6 months at work told me that I “look sick” and that I was “making myself sick”.  Fantastic.  Some months later, she was diagnosed with uterine cancer.

Before I go on from that, let me just say, this is going to be one of those times.  One of those “oh Dyspatient is really bitter.  How mean!”   I have to preface (further) by saying that I am not proud of this.

When my crazy boss – who has punished me by changing my sign in/sign out procedures because I had the nerve to advocate for restroom and food breaks at work; who told me that the other person who had my job just worked 12 hour days to cover what is an obvious and legal liability risking staffing shortfall; who made those disparaging remarks about me being sick (I didn’t bring it up, I got sick at work  prior to restroom and lunch coverage arrangements being in place and had to go to the ER) – announced to the staff that she had been diagnosed with uterine cancer, I did experience some moments of schadenfreude.

Yes, I’m a horrible person.  Yep.

Let’s see…I tried to catch up all that can be quickly summed up in my “About Me/About This Blog” section.  Some doctor stuff.  I’m living closer to a real city with big research hospitals.  Unfortunately, those hospitals seem to have a paucity of primary cares and my insurance won’t accept “rotating resident” from a clinic as a primary.  I had picked one who was local and fit a few of my preference parameters when I first moved up here – and I mean first, because while cleaning a glass and metal lamp shade in the days of unpacking post-move, I massively cut my finger.  It bled and bled and bled some more….finally after walking around with it wrapped in about a whole role of gauze, I went to change the dressing and it was still very actively bleeding.  So off to the hospital, which was covered by my old insurance with a big fat co-pay.  And then either back to the hospital some days later to have the stitches out (and another $50-otmy) or find a doctor who was in network for my NEW insurance (lucky me, I had insurance overlap!) who would take them out for a mere $15.

So I have this doctor now.  She’s a nice person I think, but not a great doctor.  She might be an ok doctor.  I can’t judge in those areas anymore.  I can judge shitty and great, but the middle ground is a place I just don’t dwell.  I tend to bring out the best or worst in them and I don’t think it’s just my affect.  How a doctor deals with someone with what is, unfortunately, a growing list of symptoms without identifiable causes (at least without primary causes) tends to be either really great or really bad.  And believe me, I’m pretty flexible on “Great”.  I’ll take compassionate, intellectually curious, thorough, advocating, educating, enduring, and with strong follow through even if there is no diagnosis at the end of it. Hear that doctors?  You don’t need to fix me!  I’d love it if you did but honestly, I’ll take helping me just get through the day to day without letting the ego threat of unknown causes and new symptoms turn you mean or dismissive.

Current primary has become dismissive.  She blew in and (tried to blow) out of that room like a whirlwind. I came in with a list of things to talk about – I knew I had this follow up scheduled so things that were problematic but not urgent, I just put on the list but I got to exactly one thing on it before I gave up on calling her back from the door. Truly, it was clear that she didn’t even read her own note for why I was there for the follow up she’d told me to schedule.  I left there feeling terrible.  And feeling very lucky to have gotten into therapy with a good psychologist, because I left with what I call the deep dark despair thoughts (D.D.D.).  So now I’ve got an appointment set up with another doctor.  Internal medicine/Infectious disease certified, good patient reviews, not as close as the one I’m leaving but if he’s good it’s worth it.  We’ll see.

consent

The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a “cost” for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.

My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can’t help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman’s distrust which was fueled by – if not entirely based on – the suffering her daughter was experiencing?

It’s not the best written story. As with any media account, there is trimming and fluffing. I’ve taken out what seems to be fluff but I can’t make up for the lack of information. Still, it’s the only story on this case out there at the moment. It’s a tragic situation, one I can’t help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I’d say inappropriately contentious encounters. I can only imagine I’d be the same way if I had a kid who was sick.

I present the information in the article as food for thought. The issue being not whether the mother’s judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.

Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.

The state Department of Children and Families last August filed charges of medical neglect against the girl’s mother, Kimberly Castro, and took custody of the East Hartford teenager.

Castro had disagreed with three teams of doctors who treated Chelsey for lupus.

DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children’s Hospital Boston.

Doctors from Connecticut Children’s Medical Center in Hartford and Yale- New Haven Children’s Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.

After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor’s orders. Both sides were awaiting a final ruling in the case when Chelsey died.

In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.

“I feel kind of angry that I’m not able to be with my mom right now,” Chelsey said in October.

Michael Perez, Castro’s court-appointed lawyer, said Chelsey was taken to Connecticut Children’s Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body’s organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.

The dispute over Chelsey’s care began almost six years ago, when doctors at Connecticut Children’s Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body’s healthy tissue.

Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.

When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children’s Medical Center. Castro transferred Chelsey to Yale-New Haven Children’s Hospital. There, the doctors found that Chelsey’s kidneys had failed.

They blamed the lupus, but Kimberly Castro blamed the medication.

At Castro’s request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That’s when Yale called DCF, accusing the mother of medical neglect.

After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey’s care be transferred to Children’s Hospital Boston.

But it wasn’t long before the same fight Castro had at Connecticut Children’s and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.

After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather’s home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.

Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.

“Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today,” Perez said.
….

down

I’m feeling down today. I had a bad intestine day yesterday, my legs have been killing at night, and the PT is not going well. I have a lot of pain doing the exercises, both in and out of the pool and I’ve been exhausted after the pool exercise.

So far I’ve only gone to PT once a week since the holidays sort of disrupted the scheduling. This week will be the first time I go twice. Once today and again on Friday. If it doesn’t go well, I will have to reassess whether it is worth it to continue the therapy – or at least whether it is worthwhile to continue like this. I’ve given myself this week as a cut off for making that decision otherwise I know I will let it play out and start doing things like canceling appointments and avoiding my out of pool exercises. I know I will do this. Knowing doesn’t mean I will not do it, so it’s best to take steps to avoid coming to that point.

Sounds silly but in my screwy world, it seems reasonable. After this week, I’ll have had four appointments and I think I’ll be able to decide if the lost time due to low energy from fatigue which is seeming to always follow is outweighed by any noticeable reduction in hip pain and increase in stability.

The therapist asked me today, as she always does, how things are going, how I’m feeling, how I felt after my last appointment. “I really don’t feel very well today, I’ve had some pretty bad leg pain in both legs, mostly down in my ankles and up in my knees although my right thigh was killing for a couple of days this weekend. And I’ve been exhausted after the appointments.” Her response was “Well we’re really not doing much…”

And that made me feel pretty bad. I would say it pisses me off, because to be honest it does. But the pissed off is secondary. I know it is. The primary thing is that her saying that felt like she was trying to negotiate or debate the point. And that’s just shitty. I told her that I realized we aren’t doing much and that this makes me feel bad, feeling so tired from doing so little. This is not normal for me. I lived 33 years of my life NOT like this. I got accustomed to NOT being like this. And now I live like this and I don’t like it. I added, after a moment of marching in place in the pool like a good little patient, that I also didn’t like hearing that we didn’t do much because I am very deeply aware of that and hearing it after I was asked how I’m feeling made me feel like a big loser for being so tired from so little.

She apologized. Pardon the pun but it was a watery apology. The apology wasn’t the point so much though. I didn’t think telling her how it felt would make it all better. But I did think that she should know how her off hand remark had made me feel.

So now I’m home, I’m pooped, and I’ve got a bit of a temp. Despite that, I’m not feeling wrecked physically – hey who knows. Maybe this time will be different and I’ll not feel horrible. The temp is not a good sign though. I’m thinking that it is nice to know I don’t have much to do tomorrow, but even that thought has a barb in that it leads me to consider how well I’ll be able to live (let alone thrive) in a professional job with a body which is so reliably unreliable.

blogging nurse(s)

Celtic Rose at First Do No Harm examines the issue of “Patient vs Client” in an excellent post.
I work in the ICU, these are not clients, these are not customers, they have not chosen to be here. They would give anything NOT to be here.

new PCP

Why does it seem that a patient is supposed to assume all doctors are not only equally qualified but equally a good fit with them? I don’t think this is just me, although I’d be hard pressed to put my finger right on what (other than my own experiences) has informed this opinion. I’ll have to think about that. For now, here are my thoughts on this implicit and possibly overly subjective impression.

I realize there are institutions and agencies in place to ensure that all licensed physicians meet a minimum standard of quality and ability. That addresses the qualification issue somewhat, but what about the second – the issue of a good fit between patient and doctor? I don’t assume a doctor’s certifications, license, and other professional qualifications means that we will be able to communicate and work effectively together. This perspective seems quite reasonable to me. And yet you can’t make an appointment to interview a doctor. At least you can’t with my health plan.

These things are on my mind because I find myself in the very unpleasant position of needing to find a new primary care doctor.

From January of 2004 until April of this year, I had a great primary care doctor, Dr. C. I found Dr. C in 2003 when she was my (ex)boyfriend’s attending while he was inpatient for a quite unexpected attack of pancreatitis (though I guess few people actually expect pancreatitis). The consulting GI who saw my boyfriend at the hospital had ruled out cholelithiasis on the basis of a low but within normal limits ejection fraction on the HIDA scan. However, the bloodwork, history, and symptoms all sort of kept pointing to that. When my boyfriend was discharged with no real diagnosis, Dr. C suggested a second GI appointment with a different doctor. One outpatient GI doctor visit and an MRI later, the gallstone was confirmed.

After this, my boyfriend and I both went to Dr. C as our primary care. Her refusal to accept a write off by the first GI doctor was not the only basis for my decision to see her as my primary care doctor but it did factor in significantly. To me it meant she was willing to consider other evidence rather than sign off on one somewhat equivocal test result in the face of still unexplained symptoms.

Dr. C was not super warm. No one would call her effusive. She was direct and respectful, no nonsense (as in taking or giving none), and as I got to know her I realized she had a nice slow burn sense of humor. She listened and she took note of the things you said outside the official answers to the official questions. She remembered things like my brother being HIV positive, my family history of autoimmune disease, and that I had mentioned my sister had found a lump in her breast around the same time a good friend was diagnosed with breast cancer.

But she moved out of state in April and now I must find a new PCP. She gave me the option of transitioning to the people who took over her practice – a married couple, both family or internal medicine (I haven’t looked them up, yet). I was uncertain about committing to this since the office is a little far away from where I now live. The only reason I kept going there since I moved was Dr. C.

I put off looking for someone but then I had surgery and you know, it sort of reminds you “hey I probably ought to find myself a new primary care doctor”. So a few weeks ago, after doing some research online, I made an appointment to check out a potential new PCP, a woman who practices a few towns over. Let’s call her Dr. Y.

Unfortunately, I had reason to see a doctor this week, well before my appointment with Dr. Y. This brings me to today. Today I saw the husband of the couple who took over for Dr. C.

At one point he said “You use medical terminology…why?” He said it quite neutrally but I felt like I had to defend something. I hadn’t recalled saying anything overtly medical except that I had recently had a laparoscopy. I wondered if that was it. And I wondered do most people say “I had a tummy operation” or “They done dug into my lady junk”?

When he noted my low blood pressure, I didn’t declare “Indeed, I am usually rather hypotensive”. I just said “yeah it’s usually kind of low”. My point is that I don’t aim for pretension.

Since today’s appointment wasn’t in a “getting to know you” context, I hadn’t had a chance to give my “why I know medical terminology so please don’t think I’m a freak” speech. It’s not like I have nothing better to do than sit down and memorize this stuff, and I think it’s important to mention this because otherwise people will assume. When he asked why I used medical terminology, I figured I needed to make sure I gave him enough info to dispell those potential assumptions.

I explained quickly “I was married to an ER doctor for 5 years and my mother was a nurse and I worked as a unit secretary to pay for college…” I said it all really fast, like a kid who was caught by his parents skateboarding without a helmet or holding a pack of cigarettes – “I swear they aren’t mine, it was Josh’s idea ’cause he took them from his older brother Mike and I didn’t even know he put them in my bag!”

New doctor had a minimal response.

I sort of feel like we didn’t hit it off. This impression was reinforced when he went to push on my “belly” although my reason for being there had little to do with that part of my anatomy. I reflexively moved my arm to block him, saying “please no, not unless you really must.” At this point, I should mention I had already told him I was still having cramps even on 400 mg of celebrex a day and that I hadn’t stopped bleeding since the surgery (I had a Mirena IUD placed during the operation – otherwise a month of blood and pain post lap would probably be more alarming). A little warning maybe, some kind of “hey I know you’re in pain but I need to poke around a bit..” would have been good, respectful, and a sign that he had actually heard what I said when I was talking.

So I kind of came away thinking I’m definitely not cancelling that appointment with Dr. Y.

I know I’m a kind of patient who can be a pain in the ass. I know it can be difficult to have a patient who had a recent case of somewhat hard to treat Lyme disease, who has endometriosis on her bowel making for confounded GI and GYN symptoms, who has autoimmune disease lurking in her family, bloodwork, and physical presentation, and who watched way too up close and personal a group of people go from being little doctorlings to full blown attendings.

I know how I’m seen as a patient to some doctors. I know because they’ve told me. But I don’t think because some people I didn’t like or feel comfortable with didn’t like me in return means I am a bad patient. My sense is that sometimes there is just what they call “a failure to communicate” brought on by an unfortunate intersection of incompatible personalities and personnas. All these doctors are people, regular normal people who also happen to practice medicine. And I’m the kind of person who people either really like or really dislike. I’m the kind of person who can seriously rub people the wrong way. Makes sense I’m that kind of patient too.

All the more reason why I shouldn’t burden this poor fellow with someone he’s quite likely just not quite up to dealing with, right? His taking me on as a patient is a lose lose situation, the way I see it.

Death by indifference

From CBS News
Ignored By 911, Woman Dies In Hospital
Emergency Operators Did Little To Help A Woman Dying In A Hospital Waiting Room
Associated Press
Wed Jun 13, 11:30 AM ET

LOS ANGELES – A woman who lay bleeding on the emergency room floor of a troubled inner-city hospital died after 911 dispatchers refused to contact paramedics or an ambulance to take her to another facility, newly released tapes of the emergency calls reveal.

Edith Isabel Rodriguez, 43, died of a perforated bowel on May 9 at Martin Luther King Jr.-Harbor Hospital. Her death was ruled accidental by the Los Angeles County coroner’s office.

Relatives said Rodriguez was bleeding from the mouth and writhing in pain for 45 minutes while she was at a hospital waiting area. Experts have said she could have survived had she been treated early enough.

In the recordings of two 911 calls that day, first obtained by the Los Angeles Times under a California Public Records Act request, callers pleaded for help for Rodriguez but were referred to hospital staff instead.

“I’m in the emergency room. My wife is dying and the nurses don’t want to help her out,” Rodriguez’s boyfriend, Jose Prado, is heard saying in Spanish through an interpreter on the tapes.
“What’s wrong with her?” a female dispatcher asked.
“She’s vomiting blood,” Prado said.
“OK, and why aren’t they helping her?” the dispatcher asked.
“They’re watching her there and they’re not doing anything. They’re just watching her,” Prado said.

The dispatcher told Prado to contact a doctor and then said paramedics wouldn’t pick her up because she was already in a hospital. She later told him to contact county police officers at a security desk.

A second 911 call was placed eight minutes later by a bystander who requested that an ambulance be sent to take Rodriguez to another hospital for care.

“She’s definitely sick and there’s a guy that’s ignoring her,” the woman told a male dispatcher.

During the call, the dispatcher argued with the woman over whether there really was an emergency.

“I cannot do anything for you for the quality of the hospital. … It is not an emergency. It is not an emergency ma’am,” he said.
“You’re not here to see how they’re treating her,” the woman replied.

The dispatcher refused to call paramedics and told the woman that she should contact hospital supervisors “and let them know” if she is unhappy.

“May God strike you too for acting the way you just acted,” the woman said finally.
“No, negative ma’am, you’re the one,” he said.

(from the Los Angeles Times)
“What’s real confusing … was that she was at a medical facility,” said Sheriff’s Capt. Steven M. Roller, who is in charge of the Century Station, which handled the calls. “That poses some real quandaries.”

At the same time, Roller said, the dismissive tone of the second dispatcher, who was not identified, was inappropriate.

“As a station commander, I don’t like any of my employees getting rude or nasty with any caller, regardless, and in that particular case, obviously, the employee’s conduct could have been better,” Roller said. The employee received written “counseling,” Roller said.

The unidentified dispatcher to whom Roller referred kept cutting off the female bystander [who had placed the second 911 call].

“Ma’am, I cannot do anything for you for the quality of the hospital there,” the dispatcher said. “Do you understand what I’m saying? This line is for emergency purposes only…. 911 is used for emergency purposes only.”
The woman replied, “This is an emergency, mister.”
The dispatcher cut her off. “It is not an emergency. It is not an emergency, ma’am.”
“It is,” the woman said.
“It is not an emergency,” the dispatcher replied.
“You’re not here to see how they’re treating her,” the bystander said.
“OK, well, that’s not a criminal thing. You understand what I’m saying?” the dispatcher said.
“Excuse me, if this woman fall out and die, what [do] you mean there ain’t a criminal thing?” the woman said.

In the days leading up to her death, Rodriguez had sought care in the King-Harbor emergency room three times. Each time she was released after receiving prescription drugs for pain. On May 8, however, she did not leave the hospital but instead lay on the benches in front of its main entrance.

County police officers found her there and helped escort her to the emergency room. There, a triage nurse told Rodriguez that nothing could be done to help her.

Meanwhile, police ran a computer check on Rodriguez and found that she had a no-bail warrant for her arrest. As she was being taken to a squad car to be placed in custody, she became unresponsive. She died a short time later in the ER.

Mystery Patient

On sly, workers rate hospital service
By Liz Kowalczyk, Globe Staff
June 13, 2007

The young woman slipped into a busy primary care waiting room at Beth Israel Deaconess Medical Center, took a chair in the back row, and pretended to read Shape magazine. As patients streamed in, standing in line to speak to a receptionist, she began taking notes on a form concealed in her magazine.

“She was engaged in a very long personal conversation,” the woman wrote about one of the receptionists, who was talking to another employee. “At one point the line was several deep, but the person . . . was not helping to check people in.”

The note-taker is a mystery shopper, one of a new breed of hospital employees in Boston and nationwide who secretly watch fellow workers to see whether patients are treated courteously and helpfully.

Beth Israel Deaconess began a mystery shopper program two years ago to monitor telephone operators who schedule appointments for patients and later expanded the program to outpatient waiting rooms in November.

Executives credit the shoppers with bringing about vast improvements, especially in telephone etiquette, with instances of poor service becoming far less frequent. Since staff began posing as patients calling to make appointments, the average customer service rating the callers gave telephone appointment specialists, on a 1-to-5 scale, jumped from 2.6 (fair) to 4.8 (excellent).

Read the full story at The Boston Globe

Critique of medical mystery shopping, article and concept:

It is possible that the program BI/Deaconess has put into place has had the effect of improving medical service, which it seems should be the goal of any improvement in patient/provider relations and should be properly measured in terms of patient outcome as well as by patient satisfaction/service ratings. But from this article, there is no way of knowing that. In the Globe story, the medical center’s goals for improvement are stated in terms of patient loyalty and competition with other high quality area hospitals (for patients, presumably privately insured patients). The measurements which are meant to bear on these goals are given in terms of customer service ratings (the 5 point scale).

The big threat poor service presents is not simply a reduction in patient satisfaction (i.e., happiness with the courteousy of the receptionist, satisfaction with the speed with which the phone was answered) which may result in patients lost to a better, or at least more pleasant, medical group. The big threat discourteous “front end” medical encounters have is that they can create unnecessary impediments to communication and therefore threaten satisfactory medical outcomes.

A patient who feels he has been subjected to rude or overly distant treatment before ever setting foot in the exam room is primed to interpret later, crucial interactions with the medical practitioner negatively. Such negative priming is a set up for communication failure. Even if this failures occur only on small, local scales in the discourse, those little failures can add up to trigger distrust behaviors in the patient, e.g., witholding information or offering over-explanations of trivial details. They can also cause the provider to feel the patient is being unnecessarily offensive and can make the provider start acting defensive.

Feedback happens, and then you’re in a loop. I’ve seen this as both a patient and a witness to provider/patient interactions. It can get ugly. It can be subtle. But it’s always bad. Even in a non-worst case scenario, a patient who has been negatively primed may be unwilling or unable to make the necessary basic connection which facilitates any communicative exchange let alone ones where the purposes are multilayered and complex, like collecting a full and relevant a history as possible or educating a patient on sucessful home care for a newly diagnosed condition. The success of such discourse goals relies on at least a minimal degree of communicative openness of the patient. If your patient shuts off before you start talking, you’re going to see that patient again – oh yes. Your diabetic patient is going to show back up with a foot ulcer because while he understood every single word which came out of your mouth about his condition, something was blocking those oh so important supralinguistic cues which would have communicated the gravity and absolute necessity of practices like daily foot exams and proper preventative care of his feet – like not wearing shoes which pinch or otherwise do not fit well.

Now that is a bad outcome.

Asking someone explicitly “how happy were you with the service?” is certainly one way to measure the affect with which that person entered the exam room, but implicit measures like outcome, understanding instructions, perception of physician’s openness, are important too. Data from those implicit measures linked with improved “customer service” and higher “customer satisfaction” like scores is what medical providers need to see if they are to be sold on the idea that attending to customer service is anything other than needless, wasteful, and insulting pandering to corporate culture.

I worked in hospitals during the late 80s – mid 90s. I think I was there for what was the beginning of a serious push to consumerize medicine. Such promotions were not received well by the staff at either hospital I worked at. I remember at the first hospital we had “Total Quality” something-or-another workshop sessions with outside patient relations specialists. Except they weren’t patient relations specialists or patient relation workshops, they were customer service specialists giving us a customer service workshop. The vocabulary was straight out of a department store employee training program (which was not lost on the medical staff). Many members of the non-clerical nursing staff felt seriously cranky at being told to adopt a “customer is always right” mentality with a patient population. Some of them were outright hostile. “If the patient were always right, we wouldn’t need hospitals. They could just diagnose themselves!” one nurse argued to the receptive audience sitting at the smokers’ picnic table during a break from the training workshop. Her sentiment was echoed in the workshops as well. We had a week of this training and I recall one day where only half the staff returned after the break.

Although there were some beneficial elements to what we were being sold back then, the “customer service” approach failed to gain a foothold in the hearts and minds of the staff. There was a clear disconnect between what the service specialists running the training knew about patients, health care work and medical culture and the realities of patients, health care work, and medical culture. But there was also the sense that medicine was special, that health care was immune, something separate from mundane concerns like putting your best face on for a patient (essentially all we were being asked to do). What was misssed and what I came to understand as I matured in my job was that patients are like the very worst customers ever. They are having THE WORST DAY, each of them. They’ve been robbed of some self determination, each of them. Even if it’s just to have had their day hijacked by a miserable headcold turning into something bacterial, or to have had their summer vacation plans wrecked by hearing they need to have surgery and they can now chose betwen taking time off to relax or taking time off to be cut into…because the job does not allow time off for both.

Being told I should treat these people like they were the most special person ever, well, in that context it makes sense. I wasn’t always great at it, but I thought about how much it sucked to go to sleep at night in a hospital and that usually set me right. But I didn’t do it because I felt it was a good idea from a profit optimization perspective (which essentially is what underlies goals like “increased patient loyalty”). I did it because it was the right thing to do from a humanist perspective and because it was the right thing to do if I wanted to do my job right.

Here’s how it worked.

Getting into an argument with an argumentative patient is not going to help ANYONE, in fact it’s going to slow me down. I will spend time on that and I won’t get these orders entered. The patient who was just admitted will not have his blood drawn on the very next phlebotomy round (in 20 minutes) and will have to wait at least another two hours, unless the doctor wants to make it a stat draw. The doctor wants, no NEEDS, some of this bloodwork now. So she writes it for a stat draw. I page phlebotomy, they come and poke him, but meanwhile there are three other labs which had been written and transcribed for a routine draw and which the doctor forgot to add onto the stat draw. Now the patient is going to feel like a pincushion. And probably come out and tell me so. Moreover, the dinner tray will be delayed for this other guy until I am done with the argumentative patient. It will come up very late, he will eat it very late and he will vomit later, and the house officer will be paged because the patient is vomiting…very very late. The patient I let bait me into an argument will have called family from his room and they will have called the desk – not necessarily to complain about the “rude clerk” but to ask if their father “really is going to be discharged tomorrow and if so, when? I need to know when. I can’t just wait around again…” The family will be irritable and will irritate the nurse I have to page to speak to them (some of them btw, the other two were in earlier tonight and the nurse already told those two all of this already). Or maybe she is very sweet and nice and isn’t irritable but is now running behind. She will subsequently forget to let me know when she hung the antibiotic and I will not be able to time the peak draw after. The secretary whose shift is after mine will have to deal with an angry resident who is looking for that peak level. After being yelled at for the earlier shift’s mistake, the secretary will call radiology to schedule a portable X-ray and when she is told it will take several hours, she will get cranky with X-ray.

…And it will just keep on spreading…

And I could have stopped it or at least not participated in it by being more tolerant with this patient who is being inappropriate if you hold people having that bad a day to the same standard of “appropriate” as you do people who aren’t.

The general messages and principles of customer service are in fact the ones I found myself employing in good patient interactions – or in setting to right bad patient interactions. Those are things I think of in terms like “I don’t have the right to get in the last word” and “It doesn’t matter who started it”. I learned these things but not from the quality/customer service training, although these messages were right there in the quality/customer service training. Why wasn’t I able to pick the message up from the training? Packaging – the total quality training person did not know enough about medical culture to know what language to put it in. And also that I had been indoctrinated into the health care culture as staff. Mom had been a nurse forever. My aunt was a nurse. My boyfriend, fiance, and then husband was a doctor. As someone who had been raised on the medical culture, the idea of applying customer service models to medicine raised my hackles, just on principle. It took me many years and some time as a patient to really fully understand the obstacles a poor attitude can have on patient relations, and the very negative effects poor patient relations can have on people’s spirits, and the connections between that and medical outcome.

If obstacles to clear communication can be prevented or reduced, then a drive to improve “customer service” in the medical setting clearly has genuine positive value. But until that value is shown, it will be hard to convince the medical community of the worth of such indirect measures as the third person evaluation of the “front end” service. The medical community has as an easy critique in the fact that the worth of such measures relies on unstated assumptions about what elements of medical interactions are important to the patient/care giver relationship and what are not. I.e., someone eating a donut at a desk (one of the instances of “bad service”) is not something which will predispose me to a negative experience or sense of being on the receiving end of a callous medical staff, at least the donut alone certainly won’t.

So then what are the right things to measure? Trust, understanding, and outcome would be good places to start. There is overlap in “customer service” and “patient relations”, but it is certainly not a full overlap. To perhaps overextend the retail metaphor, there needs to be a good product as well as a smiling clerk who sells it to you. Without attention to the quality of the product, conceding to the push to smile, nod, and wave feels like selling the patient short and selling yourself out.