very private medicine

(excerpted from The Boston Globe)
MDs offer new services, for $3,600 yearly fee
By Liz Kowalczyk, Globe Staff
June 30, 2007

Two popular Boston internists are closing their busy practices, leaving most of their 7,500 patients to find new doctors, as the physicians open a small concierge practice that will charge individuals a $3,600 yearly fee to join.

Dr. Jeffrey Bass, 50, of Brigham and Women’s Hospital, and Dr. Ronald Katz, 51, of Beth Israel Deaconess Medical Center, are the latest physicians to give up large traditional medical practices, in which doctors see a patient every 15 to 30 minutes, in favor of a slower pace and potentially higher income.
….
Concierge medical practices, despite criticism that they shut out all but the well-off, continue to attract doctors and many patients who say the practices let physicians provide more personal care in an unhurried atmosphere.

Some of the extras Bass and Katz are promising were once considered standard parts of a doctor’s portfolio, but now, most primary care doctors say they are too busy to provide them. Most notably: visiting patients in the hospital, same-day appointments, and nearly around-the-clock access to their doctor.

“I understand why the doctors are doing it,” said Dr. Richard Parker, medical director of the Beth Israel Deaconess physician organization. “They want more time with patients, fewer hassles, to get paid better. But it’s a symptom of the poor state of affairs in primary care; many doctors are looking for the exit.”

Bass and Katz, who plan to open their new practice in September, mailed letters to their patients and created a website explaining the change earlier this month. Katz said his new practice, to be called PersonalMDs, will allow him “to practice a bit of old-fashioned medicine” at a “less intense and frenetic pace.” He works about 55 hours a week now, he said, and sees 25 patients a day. He expects to work a similar number of hours, but see far fewer patients daily, and the practice will accept only 800. Among the services Katz and Bass will offer are long visits, “24/7 availability,” a waiting room with Internet access, a yearly consultation with a nutritionist, and home visits.

Bass said he expects to have 400 patients signed up by next week, “which shows me there’s a need and want.” A number of his patients are doctors, he said, which “validates the model.”

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.

Brian Regan on patient education

Penny wise…

…pound foolish. It’s not just insurance companies who follow this model. In some defense – some small wee bit of defense – of such policies, the financial wisdom of preventative care and education is not easy to see. Possibly for some, it feels like speculation, like placing a bet. Good odds or not, they are too queasy with the idea of spending some money now to save a whole lot of money later.

From The Boston Globe
Health support for poor to take hit
’08 budget cuts care of chronic ills
By Alice Dembner, Globe Staff
June 19, 2007

HOLYOKE — A program that has improved the health of low-income patients with chronic illnesses faces deep funding cuts in the pending state budget, even though top state officials touted similar disease management strategies just a month ago as a crucial way to improve healthcare quality and cut costs.

The 2008 budget, now being hammered out in a legislative conference committee, is likely to contain less than one-third of the $2.6 million that the statewide CenterCare program received this year to pay for a broad range of health education and support services at community health centers.

In Holyoke, where diabetes strikes hard and often, the program has helped hundreds of patients at a community health center adopt healthier lifestyles and reduce their blood sugar levels, an improvement that could eventually cut their risk of serious complications nearly in half. Diabetics are offered exercise classes, instruction about the disease, home visits by community health workers, one-on-one sessions with a nutritionist, and drop-in sessions that teach healthy eating.

“I lost 63 pounds and I’m controlling my sugar,” said Iris M. Santiago, a patient in Holyoke. “They’ve helped a lot of people’s lives.”

The proposed funding cuts threaten the Holyoke program, which has been recognized as a national model, as well as similar efforts at 29 other community health centers statewide. CenterCare this year paid for disease management services for only half the low-income patients eligible across the state — about 5,000 — according to the Massachusetts League of Community Health Centers. The program helps patients with asthma, cancer, heart disease, and depression, in addition to diabetes.

State Senator Steven C. Panagiotakos , chairman of the Ways and Means Committee, said the Senate reduced funding for CenterCare because “we are able to address many of the preventative care and disease management needs” through the state’s health insurance initiative because many of the program’s uninsured clients will get coverage.

But community health center officials say their efforts go far beyond that funded by most insurers, because their patients need more support to overcome the additional barriers to good health presented by poverty and low literacy.

CenterCare was established in 1988 as a managed care insurance program for low-income patients but never got off the ground. It then funded care for the uninsured at community health centers, and most recently has been paying for disease management, according to the community health centers league.

Since the program started at the health center in 2003 the average blood sugar levels of diabetic patients — called hemoglobin A1c — have dropped from 8.4 to 7.5, according to Dawn Heffernan, who manages Holyoke’s program.

(presumably this last bit refers to patients in the program or some subset of them who consented to sharing lab values)

Gynecological diagnosis III

Continued from Gynecological Diagnosis II

The gynecologist I saw in 2002 specialized more in ob than gyn. After the lap, she told me she had left several sites of endo during the procedure. She told me she did not feel confident attempting removing them, particularly the one on my right ureter. She put me on birthcontrol pills, said to come in for a follow up a few months later.

A month later I called to talk about trying a new pill since the ones she prescribed were giving me morning sickness (no really). I was told she had left her practice.

Soon after that, I caught Lyme Disease. Bad luck and geography conspired against me I suppose – I had just moved to a county with the highest per capita Lyme rate of my state. I had the big old bull’s eye rash and all. I mention it because it becomes relevant.

I eventually found another gynecologist through word of mouth and MUCH internet research. He does not do obstetrics, which was what initially interested me in him. I saw him in late January of 2003.

We tried progesterone, but to everyone’s immense surprise, it gave me breathing trouble. At the time we didn’t know it was the progesterone doing it. No. I had no idea it was even a possible effect of the medication, although I recall thinking once or twice “hm, that started in February, and I started the progesterone not long before that”. But the breathing problem had not started suddenly. It came on gradually and worked its way up to where I could not talk or walk more than a few feet without feeling like I couldn’t breath. I felt like I was drowning, like I could take breaths but wasn’t getting enough air anyhow.

The chest X-rays showed “mild hyperventilation” and that was it. The new PCP I had dismissed it. I use that word a lot in this, I know. But it is an accurate word. Dismissed is what I felt, and dismissive is how he was. He knew I had had Lyme Disease, and I think – even though I showed him the picture of my rash and the western blot results – he approached me with caution because I continued to complain of fatigue, headaches, and strange pains in my hands and feet. It never crossed my mind these were symptoms of Lyme. I had in fact asked him to check my thyroid level since all three of my paternal aunts had thyroid disease. I figured fatigue, you know, could be thyroid. What I certainly wasn’t thinking was refractory Lyme, or post Lyme, or chronic Lyme, or anything Lyme. However, it seems he thought I might have been simply by having “LYME” in my history and the temerity to not be feeling well in his office (it was my first appointment…shoulda known then and there). This made me someone to approach as if I were an idiot or crazy. Or a crazy idiot.

The breathing problem got to the point where I would have to break up lecturing to catch my breath (one of my jobs as a grad student is to teach undergraduate classes, discussion sections, and labs). I was in the midst of talking to some fellow grad students at school one day when the usual breathing issue started catching me up. I stopped and took a few breaths, deep ones as usual. Then a gulp. I didn’t feel right. Then I felt like something kicked me in the chest, a hard sudden jerk and a sucking feeling. According to my friends, I blanched and then fell over. I only remember the feeling, disorientation, and then being on the ground. The whole thing happened really fast with all of the parts coming in rapid sequence.

I called the doctor and he said to come down to his office.

When he came into the exam room, he was in a mood. He was gruff and dare I say, cranky. We spoke about the breathing and he reminded me he had already done a chest film and it was clear. He brought up the issue of “somaticizing”. I said “so you think I’m a hypochondriac?” He said, with irritation, “that’s a lay person’s term”. I got pretty pissed off at this point. “Well I’m a lay person, so that’s the word I use. They’re roughly equivalent though, right?”

We went on like this for a while. At one point, he actually raised his voice. I raised mine back. He told me he “didn’t believe in chronic lyme disease”. I had never mentioned the words “chronic lyme disease”. I had never even heard the phrase “chronic lyme disease” until he said it.

He ordered an EKG and stormed out of the room. While the tech applied the electrode patches, I started sobbing.

Prolonged QT interval. Nothing much.

On the way home, I was in an extremely dark mood. I was never certain if this was the progesterone or the “not chronic Lyme” (which turned out to be neurolyme, confirmed by a spinal tap – sometimes the oral antibiotics don’t work, but that’s another issue) but during that time period, I would get extremely angry. We all get angry, I’m sure no exception. This was different. It felt like I couldn’t come down out of it. I was an experienced angry person and I had spent a good deal of time and money in therapy working on how to deal with that. By the age of 30, while I still got pissed off, I also could usually get myself out of it. During this time, I couldn’t. I could only wait.

I was enraged on the ride home. When it finally dissolved hours later, it left me depressed and cold feeling. It’s a simplification to say I “got over” how the primary care had treated me. I got over it enough. Sometimes I still think about mailing him an envelope full of ticks and then calling him and yelling “hey, what’s that about chronic lyme now you a**hole!?”

I think what helped pull me up out of the emotional hole I was in was that I honestly wanted to be well, I had an extremely strong urge to be better. The fatigue was not ok. The developing other stuff like joint pain and headaches were not ok. I took these as being signs of stress (not neurolyme) which would improve when I had addressed the more pressing issue of the breathing. I can’t do much if I can’t walk and talk, right? So I went to a cardiologist, a pulmonologist, and I did research on my own.

In the end, I’m the one who came up with the answer. It turns out this hormone is used as a respiratory stimulant. As I understood it, it works at the central nervous system level, so you wouldn’t see any changes in the tests my doctors did – except perhaps evidence that I was breathing too deeply, too much. Essentially I was hyperventilating all the damned time because my brain was stuck sending out signals there wasn’t enough oxygen.

When I first saw a few articles (peer reviewed articles) about this use of progesterone, I asked the pulmonologist, a very nice fellow, about it. “Could that have any effect on what’s going on here?” I asked. He assured me that it is used for sleep apnea to stimulate breathing, but not at my dose. I’m still not sure he knew what my dose was. It wouldn’t be the first time a doctor misread a chart.

I felt certain it was the progesterone only after October. In early October, it was like the progesterone stopped working all at once. I had been on IV antbiotic for a month over the summer for the Lyme. During that time, I kept on taking the progesterone. I took it faithfully since it wasn’t for birth control but for pain and endo control. I had no periods and very little pelvic pain during that time. But then BLAM. I was out in Michigan, where I had lived for some time, visiting friends. And I got a period – the first one in over 6 months. The flow was heavy and the pain was unbelievable. I had to leave a restaurant in the middle of a meal after nearly passing out. I spent the evening in my hotel room in searing super strong ugly pain.

I came home and told my gynecologist. And we stopped the med. Within about a month, I was breathing free and clear. I take this as empiric evidence that the hormone was the cause of the breathing problems. I wanted to send all my doctors a bill.

By December of 2003, I started to have GI problems again. Intermittent at first. I thought it was stress. I saw a GI doctor who recommended more fiber. In Spring 2004, I had another poop/puke/pass out, this time at dinner at a faculty member’s house. That definitely topped boyfriend’s parents’ bathroom for most horrible place for this to happen. I started having diarrhea frequently. That GI doctor left for California. I saw another one in his practice, who said to stop the fiber.

As it turns out, and I’m skipping ahead here a bit, I had done something very, extremely dumb which may have had something to do with this return of the GI issues. I don’t like to admit it, but it’s part of the story so here it is. After stopping the first progesterone therapy in mid October of 2003, I had started a different progesterone type medication at my doctor’s order. I was on it for less than a week when I started bleeding and bleeding and bleeding. This was not spotting. This was a torrent. So we stopped that too.

And then I avoided the Gynecologist.

That’s the stupid part.

(to be continued…)

Gynecological diagnosis II

Continued from Gynecological diagnosis I

At the office the day of the follow up appointment, the receptionist said “routine exam?” I said no, it was not routine. I started to tell her the short version of the hospitalization story but she had shut the window.

A few minutes later, she opened it and said “The doctor had an emergency call to labor and delivery. He should be back soon.” Over an hour later, I was ushered into an exam room. The nurse handed me the paper gown and told me to get changed and wait up on the table for the routine exam.

“I’m not here for a routine exam” I practically growled at her. “Oh, well, uh, ok” she said and left the room fast, understandably looking a little on the defensive from my rotten attitude and tone. It wasn’t her fault. I knew that. But I was still pissed off.

After she left, I sat in the corner fully clothed, glowering and waiting for the doctor. When he arrived, he looked puzzled not to see someone on the exam table, sunny side up, waiting for him. He scanned the room quickly, finding me sitting in the corner. I saw his eyes shift a little once they found me. They took on a focus, an aspect that isn’t usually there in the “routine exam” context, something personal. If life had sound effects, his would have been this.

He said “So what’s going on?”

We went over why I was there and I explained I was NOT having ANOTHER pelvic exam unless it was necessary and I didn’t see why it was necessary so he was going to have to tell me what the HELL was going on first. At his suggestion, we adjorned to his office. He sat behind his desk and used words like “endometriosis” and “ovarian sites” and “small amount of blood in the cul de sac”. I had some idea of what he was talking about, but nowhere near enough to understand even what questions to ask at this point. He concluded by telling me that I probably would never be able to get pregnant. I realized even at the time this was an incredibly irresponsible if not plain old stupid thing to say to a 19 year old sexually active young woman.

Then he wrote two scripts and sent me on my way.

Back in my dorm, I called my mother. I read her the scripts and she told me they were for a diuretic and a psych med. I threw them out without filling them.

It’s many years later now. I’m 35 and I just had my second laparoscopy. The first one, in 2002, confirmed the endo diagnosis.

In Spring of 2002, after exhausting the resources of my primary care physician (I found out over a year later that he’d been dealing with his own personal case of refractory Lyme Disease – which was why his office kept canceling his appointments at the last minute) and after having lost my patience with my grad school infirmary’s health care providers, I finally went to my regular routine Ob-Gynecologist. She was one of the very few left practicing in my area due to a combination of the region being somewhat rural and the apparently quite high malpractice insurance costs in the state.

I wasn’t certain it was gynecological at first. Having had a history of both GI and GYN problems, I guess I made the same mistake my doctors had made in the past. I assumed pain between my pubic bone and diaphragm was probably GI. Especially when that pain came with a heavy dose of nausea.

What lead me on the 2002 trip through the GI/GYN maze and eventually to that first lap was that I’d been sick for nearly 2 months. I had persistent pain in my right side, sort of in the middle. That’s an odd way to phrase it, isn’t it? But I say “middle” because the issue of latitude (so to speak) came up when the infirmary’s nurse practioner ordered an ultrasound.

“A pelvic ultrasound,” the infirmary nurse said on the phone “for right upper quadrant pain.” Although I could only hear her side the conversation, I knew enough from calling in these test myself what kind of hell she was getting from the radiology department’s scheduling clerk on the other end.
“Well, it IS a pelvic ultrasound!” she said into the phone. I said “not when the pain’s above my belly button it’s not…” She ignored me.

The nurse practioner and I hadn’t hit it off. My opinion of her immediately sunk after she asked me “How much work are you missing because of the pain?” “I’m in pretty much every day, but I find myself walking to my building looking for where I can stop and puke if I need to. I mean, that’s like how I get from the garage to the building, one trash can and bathroom at a time. I feel bad all the time, every day, and sometimes I feel even worse.”
She said “It can’t be that bad if you can get up and go to work.”
I answered “I’m a PhD student working as a research assistant. I don’t GET sick time. I have to go to work, so that’s not a valid measure.”

I’ve found that doctors and nurses really don’t take that kind of tone or response very well. I resolve, every now and then, to find ways to temper my tone in such situations. I won’t temper the terms, but I could at least try on the tone. Unfortunately, when I’m not feeling well, I’m not at my best. And when I’m not at my best, it’s hard to implement that resolution.

The nurse eventually managed to order an ultrasound which would cover the areas of interest. She sent me off saying “it’s probably just a stomach flu”.

The ultrasound showed nothing. My follow up appointment with her ended with a diagnosis of “stomach flu”. I left and made an appointment with my gynecologist – an appoinment which couldn’t be scheduled until several weeks from then.

In the meantime, the pain persisted. Three things about how I felt concerned me deeply. One was where the pain was. It had started in my pelvis – quite acutely one day at breakfast. I was at Bickford’s. I remember very well. I was eating an omlette, which I didn’t make it through. I have occasion to look back on the days before that breakfast as the last few days I felt genuinely GOOD.

When the pain started that day, it was central and in a sort of column up, starting about 2 inches over my pubic bone but stopping abot an inch or so below my waist. Genuine pelvic pain. After a few days, it radiated up and around my side, nearly into my back, and there it had remained for months.

The second this that concerned me deeply was that I felt so baaaaaadd. I was constantly nauseous and run down, like I had the flu. I had an elevated temp, never reaching the standard for a fever but high for someone who’s normally hanging out in the high 97 area.

And lastly, I was starting to fall behind in my school work. I would have liked to be as dismissive about this illness as the infirmary nurse, mostly because I was getting tired of feeling like the chronically sick girl. When the hell was I going to get better? It was very frustrating, it wore on me. It made me cranky and a little sad. I had never been a super active person, but I enjoyed walking, it was not unusual for me to take a five mile walk on a day off. Also, I was typically a rather animated and energetic person. And I am smart, verbally quick, and usually somewhat funny. I like to socialize. But it’s hard to be your walking, energetic, smart, chatty, funny, sociable self when you feel so run down, sick to your stomach, and in PAIN all the time.

I had no idea pain could be so exhausting.

The day of my appointment with my gynecologist, I was in an immense amount of pain. I’d been taking ibuprofen in doses even my mother the old battle axe nurse would have disapproved of (she tended to see the maximum doses on most OTC meds as mere suggestions – except for acetaminophen), but I was barely able to lie flat on the exam table.

My gynecologist said she thought it might be the endo but that she couldn’t be sure without a lap. I said, somewhat to my horror, “then do the lap.” I needed to know and I needed this fixed. I could live like this, but I certainly wasn’t going to be able to live well like this. I was 30 years old and, despite the occasional, isolated, and those days quite rare acute pain/poop/puke/passing out episodes, I was pretty darned healthy.

I took a stats exam the day we decided to do the lap. I did not do well on the stats exam. I ended up taking an incomplete in the class. This was not unheard of, but I had done very well in Stats I, and to take an incomplete in Stats II was something of a mark of shame in graduate school. Especially in my program, which was heavily analytical.

(to be continued)

“At least I’m not naked”

Ever wonder what your patients are doing in there?

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.

Gynecological diagnosis I

“Mittleschmerz” the old man who sat on the edge of my bed said to me “literally means ‘pain in the middle’ or midcycle pain.” He was explaining this the morning after the alleged “mittleschmerz” hit me.

We were in my college’s infirmary. I had spent the night there, medicated but still in so much pain that my legs were constantly moving and I would drift off only lightly then wake up in a cold sweat, crampy and feeling like I had to urgently evacuate from both ends. I’d make a staggering walk across the cold floor to a restroom where I sat hunched up on a toilet, gagging and crying, and then I’d return to bed when it felt the spasm had passed. I was just barely 19, at college, and sick. This sucked.

It all started when I was at work. I had been accepted the year before at a university my parents could not afford but which was one of the more prestigious universities I had applied to. So when I got in, my parents wouldn’t hear of my not going. We had all the usual loans a working class family sending a kid to an overpriced college had. In addition to the loan money I am still paying off (18 years later), I was approved for work study. This meant working two on campus jobs in addition to my outside job in order to afford books, food, and phone service. Frequently, I went without phone service.

My outside job was a part time evening weekend shift job as an inpatient clerk (aka “unit secretary”) at one of the hospitals in the NW Boston suburbs. It didn’t pay much during the semester, but it allowed me to pick up overtime shifts on holidays and breaks, which I did often. I floated to and worked per diem on many floors aside from my own, the inpatient surgical unit. Oh, this was back when there were inpatient surgical units. These days, most of the procedures we housed pre and post op patients for would be performed on an outpatient basis in a day surgical clinic. But this was the roaring 90s, barely even. This was the day of pre-op chest x-rays and EKGs for everyone, routine metabolic labs, and post-op care which included not going home until your pain, eating, and elimination were all well under control.

One of my work study jobs was at the very infirmary, where I now lay with this old man leaning over me, a too thin blanket and my growing annoyance between us. At the infirmary job, I pulled charts and made appointments, handled the front desk, learned (to my great horror) which of my friends were and which weren’t using condoms, and refered patients to outside medical facilities. The last one I did with great enthusiasm. It was a necessary service since all of the very few actual MDs we had on staff were only part time and worked what seemed like erratic hours. The appointments filled up far in advance. For gynecology, we routinely booked well into the next semester. Fortunately, we had a roladex which had the names and numbers of several area doctors, gynecologists included. I worked with many of them at the hospital clerical job since so many of our inpatients were gynecological patients. I once asked one of the older nurses “hey how come so many of our patients are gynecology?” in all innocence. She laughed ruefully, then announced my question to the other nurses at the station. They treated me as if I had asked “where do babies come from?” Only when I was about 15 years older did I realize the full reality of why most of the surgical patients were gynecological patients, or possibly vice versa.

My third job was the one I was at the night the pain that won me a stay in the infirmary hit me. I worked for the campus safety escort service. This is the service that runs the shuttles and employs students to work in pairs at various locations around campus to walk with students who do not want to walk alone at night. My co-worker that night was J____, a sort of fluffy superficial young woman who lived on my hall. J____ had pulled strings to get us to work together, something I was supposed to be thankful for but which I was finding difficult to handle. My shift was at the library, and due to the general attitude of safety and privilege among the undergrads at my university, I got to spend most of my time at the library shift sitting at the library instead of walking anyone anywhere. This was ideal since it meant I could read. Except when J____ was there. When J____ was there, it was more talk than study.

When we finally got a walk, I was happy for the break at least from the chatter and what was becoming a stuffy late evening library feeling. We set out, J_____ and I wearing our little vests which marked us as safety escort walkers, walkie talkies attached to our belt loops of our pants. We were in charge. Except when I doubled over in pain a few yards out. I started retching into the bushes and J____ called in a request for another walker. The dispatcher was swamped and told us to sit tight and wait. J____ was sensible enough to decide she wouldn’t put me through a wait. The poor girl we were walking looked horrified. She and J____ ended up walking me to the infirmary, half dragging me at times down the hill and into the pit where the infirmary buildings were clustered.

When we got to the infirmary, the doors were locked. There was a sign directing us to a side entrance where we stood and waited after J____ rang a bell. A nurse appeared in the doorway, holding the door just open enough to peek out like a frightened old lady checking her door at 2 AM in a bad neighborhood. Jenn explained our situation and the nurse grilled us there on the doorstep. “How much has she had to drink tonight?” she asked. “What? Nothing! We’re working!” J____ huffed, personally offended now. Finally, the nurse let me in, shooing J____ and the other young woman away. The nurse was curt but efficient. She gave me some pain meds after checking my vitals, then showed me to a bed where I was left for the night.

Which brings us up to the morning with the doctor on my bed.

“‘Mittle’ is German for ‘middle’ and ‘schmerz’ is the German word for ‘pain'” he told me in what I could only hear as a condescending tone. “Isn’t that more of a description than a diagnosis?” I asked, incredulous that something this horribly wrong feeling could have suddenly happened to my body but didn’t warrant an investigation more thorough than this…which I saw even then as a dismissive pat on the head. He explained very briefly that it was normal for some women. I pondered a life of this as a normal state of affairs. I was 18. I had no idea what that would be like. I know now.

The doctor gave me a dose of donnatal and discharged me. I walked back to my dorm alone. My dorm was at the bottom of another hill, a hill which at least one student took on his face at the start of each semester. I remember walking the long way around to avoid the hill, but feeling like the ground was tilting in a sickening way as I walked over it. It was relatively flat going, but my feet slipped and dragged in response to the messages from my brain that I was going up, down, and sideways. I finally made it back to my room. I recall looking in the mirror and seeing myself, pale, dark circles under my eyes, and very very high looking. I looked closer. My pupils were huge. I called my mother, the nurse. “Donnatal has bella donna in it” she said. “That’s why your pupils are big. Do you have someone there? Do you need to come home?” Home was the last place I wanted to be, as much as this sucked, home always sucked more. “No, I’ll stay put. Get some sleep, you know?” I told her with as much good feeling confidence as I could muster. My belly still hurt pretty bad, except now I felt looped.

About two years later, I had three more experiences like this in rapid succession. The first was at my then boyfriend’s house, when I locked myself in the bathroom of his parents’ house because the cramping and bowel urgency was so horrible I couldn’t be away from a toilet. I pooped, puked, and then passed out. I woke up shaking and sore, having hit my head on something on the way out.

The next was on a train home from dinner in Boston with a group of friends. There was no bathroom, just the long commuter rail trip north from an overly rich dinner which I’d only been able to eat a very little of before feeling suddenly and badly full. I lay on the floor of the train crying, going in and out of consciousness, puking, and (according to one fo my friends) looking green. “Honestly,” this friend told my mother at breakfast a few days later “I’ve never seen anyone look that color!”

The last one landed me in the hospital. My then boyfriend (the same one whose parents’ house I had passed out in about a month before) and I had had a huge fight. It was around valentine’s day. I threw a vase of flowers at him, slammed the door to my room, and then got hit with that same horrible pain. I made my way to the women’s room and went through the usual toilet routine. Nothing. Just pain and feeling like I had to GO, but nothing. The pain got worse. I made my way back to my room to find my boyfriend looking for more argument. He saw me and the angry hostile look evaporated. “My god are you ok?” he asked. “No…” I grunted and climbed into bed.

Some time later, the campus EMT team was called. This crack squad of health care providers consisted of pre-med college students, some of whom were in fact EMTs but most were kids whose entire medical experience thus far consisted of working as volunteers on the ward where daddy admitted most of his patients. One of these kids was taking my blood pressure. I had passed out after vomiting into the trashcan, at least I think that’s what happened because leaning out over the trashcan was the last thing I remembered before waking up to feel a cuff on my arm and hearing a young man’s voice asking someone “hey, the top number’s getting higher and the bottom one is dropping. What does THAT mean?” “I think it means I’m going into shock” I said. The boy noticed I was awake, leaned in, and yelled into my face “HOW MUCH DID YOU HAVE TO DRINK TONIGHT?”

I tried to explain how much soda and water I had had that night, thinking in my somewhat muddled state that he was asking about my fluid intake. It became clear he wasn’t when he repeated the question adding “WHAT ELSE DID YOU DRINK?”

I knew at this point that these kids were trouble. Well intentioned, but pretty much only there for first aid in cases of mild ODs, acid freakouts, and alcohol poisoning.

Finally the real EMTs showed up. We had a short argument about what hospital I could go to. They wanted to transport to the nearest and I wanted to go where I and my mother worked – mostly because the closest had a reputation as a wreck of a place where negligence was part of the daily practice. My mother worked in the ER of our hospital and would bring home stories of people dismissed and discharged from the ED of the more local hospital and who ended up admitted through our ER within one day.

The EMTs were having none of it. I thought if a patient was conscious, he could request to go to a particular hospital, but they argued my insurance would not pay for this luxury. I insisted. We argued. It was solved by a quick phone call to my father, the junior low level insurance executive. The folks in my now rather crowded dorm room stood around waiting while I made the call. My phone was shaped like a bright red high heeled shoe. God, in retrospect this is a truly odd scene.

“Dad, does our insurance cover transportation to the other hospital?” I asked him after very briefly explaining what was going on.

I am still sort of amazed at how much charge I took that night. I think I had to, but I think part of what necessitated it was that since adolescence, I have felt like I am the best person to be in charge of any such peer based emergency. I was the kid who didn’t drink or get high but hung out with the drinkers and stoners. I was the girl who had the first aid supplies, the condoms, the extra tampon, the saftey pins, the scissors. I came equipped.

I think my friends, having learned this is the way it would be with me, tended to step back and wait for me to do what needed doing even when I sincerely was not in a position to do it. So my needing to run the room that night was in part my own fault. I’m nearly 20 years older now and I like to think I’ve gotten at least a little better at letting other people be in charge, but I am by no means good at letting others be in control of my body and my medical situations – even when it is necessary.

My dad, confused but knowing not to argue, said “yes, it’ll cover it” that night and we were on our way. Sort of. I refused to be carried down the stairs on a stretcher. We had some more words and finally they very reluctantly walked me down. I made it to the outer doors, sat on the stretcher, and lost consciousness.

I came to fighting and slapping at what felt like someone trying to suffocate me. In reality, it was just the emergency technician trying to put an O2 mask on me. As we passed the doors of the ambulance bay, I heard my mother’s voice saying “well they called in a 20 year old with acute pelvic pain from your university and I thought ‘that’s probably my daughter'” She was charge that night, as she usually was. She’d been a nurse manager, head nurse (back when they were called that), staff nurse, and nursing supervisor at nearly a half dozen different Boston area hospitals since the 1970s. She’s worked on burn units, one of the first transplant units, and emergency departments. I dislike her as a person, but she’s an extremely competent and very well qualified nurse.

My mother took me as a patient that night and got me settled in a room. I had an ultrasound and was admitted to the GI service rather promptly. I’d been seen by a Boston pediatric GI group for something like 8 years at that point, so the natural assumption was that this was GI related. However, the ultrasound showed evidence of a ruptured ovarian cyst. As soon as that result came in, the GI service dropped me faster than you could say “endometriosis”. They left me without diet or med orders. Finally an on call doctor from my private gynecology service called in a few reluctant orders. When he came in to see me the next day, he sat in a chair across from my bed and explained about the cyst. He explained very minimally, telling me I should schedule a follow up appointment to talk about this with my regular gynecologist when I was discharged.

continued