Friday, April 29, 2011

FACTORY VS. CHURCH?

A man in our cancer support group spoke this week about the difference between two medical offices he'd visited.

"I wish Dr. A had seen me in his waiting room," he said. "At least there were windows there. An assistant finally called my name and led my wife and me to an examining room where there were no windows, nothing on the walls, only an old People magazine. We waited there for twenty minutes, and finally the doctor came in. Discussing it as we drove home, we both felt kind of disrespected.

"We might not have even commented on it, except that last week we'd been to see Dr. B. Now, his office is full of life. In the waiting room are plenty of plants and an aquarium. There are beautiful framed photos on the wall. We weren't put into an exam room until the doctor was ready to see us, and what a difference: carpeting, wallpaper, a window--a really homey place…"

You might think that docs are cognizant of what goes on in their offices, but often they're oblivious. Years ago, when I'd bring my father to his oncology visits, I ground my teeth as we waited and waited in the aptly named waiting room. I eventually realized the office ran a standard ninety minutes late. One afternoon, as we were leaving, the receptionist assigned us the next visit. I noted it would be at 1PM.

"Okay," I said, "we'll be here at 2:30 on the nose."

"No, the appointment's at 1."

"You know as well as I do," I said, "that we won't be taken into an examining room till 2:30. My father's eighty-five. He can't take that."

Later that day, the doctor phoned us. He told us he was appalled and humiliated. He truly hadn't known how long patients waited. He went on to make changes in his office operation, and from then on we waited no longer than ten minutes.

Treatment isn't restricted to chemicals and physical procedures. It includes esthetics, too. Does the medical office atmosphere feel like a healing sanctuary in which you're treated each moment with compassionate regard, or more like an impersonal industrial workplace? In other words, does the ambience make you feel better or worse?

In the Middle Ages in Europe, when there were no hospitals at all, churches took in the sick. The nuns (that history, incidently, is why British nurses are often still called "sister") possessed the medical acumen of the time, which was close to zero. However, their patients inhabited sacred architecture, were bathed in stained glass light, and treated with food, rest, quiet and dignity.

We needn't choose between chilly high-tech interventions and beautiful surroundings; why shouldn't healthcare comprise both? In fact, why would practitioners want to work in an ungracious setting?

Left to their own devices, healthcare's corporate owners will tend to change things only in ways that increase profits. I've long predicted that if current trends continue, we'll eventually receive diagnosis and treatment from vending machines.

That's the default, but feedback from patients--that is, customers--will have an effect. I've made it a personal practice to send e-mails to the docs I've seen as a patient, evaluating the care I was given. My messages are usually of praise, but sometimes they're critical. I encourage other patients to do similarly since there's hardly any mechanism in healthcare that honors patients' experiences.

One exception is the Kaiser Permanente system, which for the past several years has incorporated patient satisfaction into its formula for paying its physicians. Imagine what healthcare economics would look like if patient satisfaction were a major value everywhere. 

Tuesday, April 26, 2011

SPARE PARTS R US

How should we respond when some hi-tech advance savages our sense of morals? Read this article, from this month's Genetix Biz, and see what you think…


FETAL FUTURES UP; NEW FACILITY PROMISES BUMPER CROP

Intergene, a wholly owned subsidiary of FleshTek Industries, having recently predicted a banner year, invited this reporter to tour its new state-of-the-art facility.

Set within gently rolling hills outside Gaithersburg, Maryland, Intergene’s complex announces itself only by its user-friendly sign, “Dr. Frank’s Farm,” and the several security checkpoints through which visitors must pass.
               
“Dr. Frank,” actually Dr. Franklin Stone, the trim, scholarly research physician who pioneered the science of fetal husbandry, explains the farm’s homey atmosphere. 
       
“We make it look as rustic as any other farm,” he says, “in order to make science more palatable to lay people. Our security personnel dress in blue jeans and ginghams, the research buildings look on the outside like old barns, and we even leave rusty harrows and plowshares near the parking lot.”
       
Indeed, a casual observer might see this as a commercial chicken farm instead of what it actually is, a factory in which human fetuses are cultured for organ harvests.
       
His technicians carefully join selected human ova and sperm, replicate the product several hundredfold, and nurture the fetuses in artificial wombs until organs are needed. Since each fetus’ genetic makeup is completely known, perfect recipient matches are a matter of course. 
       
Dr. Stone explains the advantages of this technology: “People in need of organs need no longer suffer painful, undignified delays while blind chance selects donors of unknown background and medical history, who may or may not be immunologically compatible. We have what they need on stock right now. And as for the fetuses, our polyvinyl wombs are far more secure and nutritive than the traditional model. It’s a win-win.”
       
While Intergene can anticipate a bullish market in fetus futures this year, the project is not without its problems. One, for example, is shelf life. As yet, the fetuses cannot be frozen, so Intergene must allow full development and delivery. The delivered products are maintained in good shape in a closed compound.
       
“It actually works out well,” Dr. Stone explains, “since occasionally we need a child-sized organ. On the other hand, we’re starting to wonder what we’ll do when products reach maturity. For example, what if they breed with each other? Or, say, what if one escapes from a facility with less careful security than ours? Or the worst-case scenario: what if one learns language?”
       
Dr. Stone raises weighty ethical issues here that have not escaped academic notice. Dr. Arlen Cypher, Bioethicist-in-Residence at the Prestigious Institute-On-The-Hudson, has studied the issue for several years. “While heuristic in concept," Dr. Cypher says, "fetus farms may be congruent with teleological modelling.” Dr. Cypher currently heads a Presidential task force charged with further clarifying the field.
       
Unsurprisingly, some religious officials have gotten involved. Monsignor Francis X. O'Shaughnessy, a spokesman for the Philadelphia archdiocese, advises, “Granted, these fetuses were conceived and nurtured outside the motherly womb, but at least we should give them the benefit of the doubt by baptizing them.”
       
The Monsignor’s advice strikes Dr. Stone humorously. “Ridiculous!” he chuckles. “Baptize them?! You can’t baptize them! They’re patented!”
       
So while Intergene’s fetal futures rise and Dr. Stone returns to his husbandry, significant questions remain. The last word for now is from bioethicist Dr. Cypher: “One thing is absolutely certain: we need more research.”

The article made me angry enough to write a letter to my Congressman, until I learned he also represents FleshTek Industries.

Monday, April 25, 2011

CONSUMERS AND PROVIDERS: A PERVERSION OF LANGUAGE

Do you wonder why the discussion of healthcare reform revolves around money--who pays for what--while the actual process, the intimate contact between patient and physician, seems to have no relevancy at all?

It's because the medical examining room has in recent decades gotten crowded by third parties. Government agents, lawyers, insurance minions, and a horde of sharply dressed sales reps have worked their way in, importing their particular language, a tongue rich in self-serving euphemism. 


Take "affordable" medical insurance, for example. You can actually afford a policy provided you shift your budget from decent food to bulk carbohydrates, but its deductible and copay requirements can edge you toward bankruptcy. That "oral administration fee" on your hospital bill is twenty bucks for handing you your aspirins. When hospitals lay off nurses in order to pay larger bonuses to administrators, they call it "downsizing," which sounds cleaner, like calling a car "pre-owned" rather than used.

Language is both descriptive and prescriptive. It expresses what we make of our world and also influences what we see. Call members of the other tribe "cockroaches" enough, and eventually they'll look subhuman. In the same way, labeling medical practitioners "providers" and those they serve "consumers" has gradually reduced our concept of the healthcare transaction to the transfer of a commodity, a standardized, generic product. I'd like a quart of healthcare, please. This practice enriches the examining room's interlopers at the cost of the original occupants' well-being.


I'm happy to learn that on this subject I'm not just another curmudgeon in the wilderness. Economist and Nobel laureate Paul Krugman, wrote in the NY Times a few days ago (http://www.nytimes.com/2011/04/22/opinion/22krugman.html?_r=1),

"The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car — and their only complaint is that it isn’t commercial enough."

The next time you hear "consumer" and "provider" in the same sentence, then, please take a breath and set the poor speaker straight.

Monday, April 18, 2011

HUMAN ERROR FACTOR

Sometimes I think I'm too hard on us plain old folks. I expect us to live up to our species name, Homo sapiens (sapient: wise, sage, discerning), but then I remember our characterological Achilles heel, error. It's built in. No human is free of human error.

But don't abandon hope, for Science might yet conjure a remedy. Check out this article from last week's Progress magazine.

To err is human, they say. But is it? Are we fated eternally to miss typos, get lost, splash sauce onto our shirts?
       
Not necessarily, claims Dr. Gladys Taylor, Chief Investigator in the Serology Branch of the respected Sloan-Smithson Institute in Albany, New York. According to Dr. Taylor, human fallibility actually represents a chemical imbalance. “It seems,” she says, “that we're on the verge of isolating the blood factor responsible for blunders. Barring any further mishaps, we'll have our breakthrough any day now.”
       
Scientists have long attributed mistakes in our species to a hypothetical protein, Human Error Factor (HEF). But the substance had never actually been identified until Dr. Taylor's team inadvertently benefited from a series of tragedies caused by human error. Her technicians secured blood samples from Union Carbide engineers in Bhopal, India, former nuclear reactor operators in Chernobyl and Three-Mile Island, and random Pentagon employees.
       
“These people were rich in HEF,” smiles Dr. Taylor. “It just bubbled up to the top of their specimens and formed a crust--an imperfect crust, at that.”
       
From that sample, her laboratory isolated almost pure Human Error Factor. “We could have purified it completely,” explains Dr. Taylor, “but for technical limits in our equipment. So we've ordered more accurate gear. Actually, we've had to order it three times now. First it got lost in shipping, and the next time the parcel service truck ran off the road.”
       
When scientists finally have pure HEF at their disposal, they'll be able to program bacterial colonies to mass-produce antibodies to it so that eventually we’ll be able to vaccinate ourselves against mistakes.
       
According to Dr. Taylor, “Development will take a few years, since, like all vaccines, we'll need to test it on lab animals first, then on detainees and whoever. Only then can we give it to humans.”
       
Dr. Taylor's pioneering has stimulated research elsewhere. Other labs have reported, for example, that while all people carry HEF, some have more than others. The spectrum ranges from computer software engineers—who have three times the average concentration—to Presbyterian ministers, who seem totally free of the substance.
       
“One statistic has me worried, though,” Dr. Taylor admits. “Public officials seem to rank high in HEF; in fact, the higher the official, the higher the HEF level. Therefore we've asked the Surgeon General to test our highest government personnel. I hope he gets our letter soon. We tried to call him, but operators kept misdirecting us.”
       
Unsurprisingly, Dr. Taylor's suggestion has not found a champion on Capitol Hill. “Preposterous!” thunders Rep. Samuel Chadwick (R-NH). “Members of Congress aren’t the ones to test for this human error stuff. Test athletes! Test welfare queens!” And Sen. William Sims (D-NM) asks, “What’s all this talk about incompetence in government, anyway? If it's so common, why have I missed it?” 

Wednesday, April 13, 2011

WHAT WOULD YOU DO IF IT WERE YOU, DOC?

A group from Duke University and the University of Michigan wondered whether a choice in treatment that physicians would make for themselves might differ from what they'd recommend to a patient. How do researchers dream up such ideas, anyway? Well, when they looked, sure enough, there was a dramatic difference. You can find the abstract at  http://archinte.ama-assn.org/cgi/content/abstract/171/7/630.

The researchers presented physicians with two hypothetical treatment alternatives. One choice carried a higher likelihood of dying, but a higher quality of life if they didn't die. I call this the "quality" choice. Choice number two--I'll call it "quantity"--involved a greater chance of survival but with troubling aftereffects. The docs were asked to recommend one of the two treatments for a patient, and also one for themselves if they were the patient.

38% of the docs chose "quality" for themselves but only 25% recommended it to their patients. In a scenario with another hypothetical illness, 63% chose "quality" for themselves but only 49% chose that for their patients. In other words, the docs would usually advise patients to opt for probable quantity over quality of life while they'd choose the opposite for themselves.

What sense are we to make of this double standard? Maybe physicians assume that patients want survival at all costs. But they really can't know what patients want unless they ask. One of the authors, Dr. Peter Ubel, concluded from this study that patients shouldn't request advice until their doctor understands them better, including how they weigh issues such as quality versus length of life. Said Dr. Ubel, "I think the doctors, when they were imagining themselves as the patients, were saying, 'Yes, there is a higher survival, but I don't want to put up with these horrible side effects.' On the other hand, when they are making recommendations for the patients, it is easier to push those emotions aside.''

Medical doctors have traditionally been taught, implicitly but thoroughly, to push their emotions aside. But here's a situation where that skill--if you want to call it that, and not a disability--can actually degrade treatment. After all, obtaining medical care isn't the same as, say, obtaining a pair of socks. The relationship between seller and buyer of socks is inconsequential, but the patient-doctor link is fraught with life and death issues. If healthcare is to be conducted as though people matter, it must necessarily honor the emotions of all parties.

Tuesday, April 12, 2011

WE PROTECT CHEMICALS MORE THAN CHILDREN

What is a poison? Socrates swallows the hemlock, clutches his belly, and dies, right?

We think of poisoning as immediate, but unfortunately for us and especially our children, that's almost never the case. Most poisons--and we live amidst thousands of them--exert their effects in small but cumulative increments, over years and decades. Examples are the many organic compounds that permeate our lives, like food additives, pesticides, and plastic breakdown products. Isolated doses might be rather harmless, but long-term aggregate exposure can be tangibly hazardous.

For example, in every school in my region, employees regularly apply herbicides to the landscaping, that practice being ostensibly cheaper than hand-weeding. They try to do this on weekends and holidays, allowing time for the chemicals to degrade before kids are present. When I inform parents about this practice, they usually respond that their children don't seem to have suffered ill effects. This is unjustifiably sanguine, ignorant of the fact that multiple exposures over years add up.  

Take the herbicide glyphosate, brand name Roundup, of which we use plenty. In 2007 alone, American farmers applied 185 million pounds of it, double the amount used only six years earlier. Roundup's been effective not only in wiping out crop weeds, but also in keeping gardens and golf courses pristine.

Its manufacturer, the Monsanto Corporation, has also genetically modified corn, soybeans and cotton to be "Roundup Ready," or immune to the herbicide's effect, so that farmers can grow crops amidst weed-killing concentrations of glyphosate. It's understandable, then, that some U.S. farm organizations say this chemical is too beneficial to give up. But critics say glyphosate may not be as safe as initially believed, and farmers should be cautious.

For one thing, Roundup is beginning to fail its own purposes. Just as pathogenic bacteria exposed to antibiotics mutate resistant strains, weeds are learning to ignore Roundup. More than 130 species have developed herbicide resistance in the United States, raising the question of whether this chemical is morphing from Dr Jekyll into Mr. Hyde.

Roundup might be harmful to human health as well. The EPA is now examining a study that claims to have detected concentrations of glyphosate in the urine of farmers and their children in two American states. Higher levels were found in farmers who did not wear protective clothing when they used glyphosate or who otherwise improperly handled it.

The agency also said it's looking at a study partly sponsored by the National Institutes of Health that found some users of glyphosate had a higher risk of multiple myeloma, a cancer affecting bone marrow, than people who never used the chemical. The Institute of Science in Society has called for a global ban on glyphosate, citing research showing the chemical has "extreme toxicity," including indications it can cause birth defects. The EPA plans to rule on whether to ban glyphosate possibly by 2015.

Canada is also re-evaluating glyphosate, but through a different lens. Where the United States offers chemicals the same protection it offers citizens--innocent until proven guilty--Canada follows what's called the "precautionary principle," which bans chemicals with suspected toxicity.

We need to rethink our concept of poison. Since the poisons we actually live with are subtler than we've believed, we've developed public health policies that award chemicals greater protection than children in a schoolyard. 

Thursday, April 7, 2011

WHAT'S REAL?

I suppose yesterday's post left some readers scratching their heads. Is Post-Mature Birth Syndrome a real phenomenon, journalistic hyperbole, or an outright hoax?

I'm not going to answer, but I do wish we'd ask ourselves that question every time we hear about the latest medical "breakthrough." So here's another one, from the Journal of Medical Breakthroughs

PATHOLOGICAL NICENESS SYNDROME:                 KILLER WITH VELVET GLOVES

Nancy Simpson considered herself a reasonably happy, average, normal woman. She’d raised two children while her husband, Ted, pursued his career selling insurance. The kids went away to college, she and Ted began to make each other’s acquaintance anew, and still...something wasn’t right.

“I should have felt terrific,” she complains. “Accomplished. Complete. But I was miserable. I felt drained and exhausted, as though something had sucked my energy away.”

She visited doctor after doctor. One told her that her thyroid was deficient, but the replacement he prescribed made her insomnic and jittery. Another doctor gave her antidepressants, which only sagged her out more. Working her way through the medical system, she was told she was prematurely menopausal, manic-depressive, malingering, fibromyalgic, and allergic, depending on whom you believe, to alcohol, carpeting, yeast organisms, her own blood sugar, and irony.

“I thought I’d live out my life reading National Geographics in doctors’ waiting rooms,” she sighs, “but finally I found Dr. Beane, who diagnosed PNS.”

Dr. T. Richards Beane and PNS, or Pathological Niceness Syndrome, are almost synonymous in medical circles. A trim, sober-looking man in his middle years, Dr. Beane describes the syndrome as a persistent need to behave more nicely than conditions warrant.

“Almost all PNS patients,” he explains, “are women. We aren’t sure about its source. But suffice it to say that compulsive niceness marinating over many years can brew up a volcano of anger. These patients are rich in bile and heavy in spleen.” 
                              
Dr. Beane favors behavior-modification therapy. At his clinic, the Institute for the Study of Niceness in Boise, Idaho, highly trained technicians coax the afflicted away from their ingrained pleasantness.                   
On a Thursday afternoon, one of Dr. Beane’s technicians, Jean Armentraut, mentions to her group of three PNS patients, “Oh, I’m terribly thirsty. A little iced tea would be so nice.”
                                       
The two newest patients, Marie and Wanda, leap from their seats. “Let me do it,” pleads Marie. “Wanda did it last time.”                                                              
“Oh, no!” answers Wanda. “I was just about to go to the kitchen anyway!”  
                    
Ms. Armentraut turns calmly to Mildred, the veteran patient, who has remained silent, and comments, “Mildred hasn’t had a chance to contribute. Mildred, why don’t you get the tea?”                               

Mildred bares her canines. “Jean, why don't you take a flying…” 
                              
Technician Armentraut turns proudly to the interviewer. “As you can see,” she beams, “Mildred’s making marvelous strides.”                                                                              
PNS treatment becomes more intense, building upon each small success. Later, male technicians with five o’clock shadows and filthy T-shirts will scream at patients orders to mend socks, chicken-fry steaks, and fetch cold brewskis.
                                                
Like Nancy Simpson, millions of women may actually not be allergic to their wallpaper or their conjugal sheets, but instead suffer this most insidious of diseases. The last word for the moment is from Dr. Beane, who advises, “One thing is for sure: we need more research.”

Tuesday, April 5, 2011

POST-MATURE BIRTH SYNDROME: THE SUBTLE CRIPPLER

Finally, an authentic breakthrough...

“I was never on time to anything,” Meredith Yolk recalls. “I was late every day to school  --every day for thirteen years! It was so embarrassing. I was late for my graduation, late for job interviews, always late to work. I even kept my husband waiting at the altar. It felt as though a clock inside me had been set wrong.”

Meredith Yolk is literally correct, for she is one of millions of Americans who suffer a malady totally unknown even five years ago, Post-Mature Birth Syndrome, or PBS. Its victims were born later than they should have been. A half-hour delay at birth becomes the half-hour of lateness that will haunt them the rest of their tragic lives.

According to Dr. Karl Mandrake, Chief Investigator at the respected Sloan-Smithson Institute in Albany, New York, approximately one in ten Americans suffers PBS. “And the tragedy,” says Dr. Mandrake, “is that most of its victims believe they have a personal shortcoming, not a disease.”

Dr. Mandrake goes on to explain this strange condition. “The normal human gestation period is nine months, with the child born at the minute and hour of conception. Although you may know that ten percent of us are born prematurely, you probably weren't aware that another ten percent are born a few minutes to several hours after the ideal delivery time. During this delay, the fetal brain secretes an abnormal hormone called ‘procrastinin.’ Once born, the poor person is perpetually tardy because procrastinin holds up his or her internal clock exactly the duration of birth lateness.”

The World Health Organization reported recently that post-maturity is unevenly distributed. For example, while it is virtually unknown in Scandinavia, some researchers claim to be able to smell procrastinin--so high is the level--throughout the American legal system. It is in post-maturity hotbeds such as this that scientists have isolated pure procrastinin for research purposes. Dr. Mandrake’s group even succeeded in creating antibodies to procrastinin, hoping to immunize PBS victims into punctuality. Unfortunately, all their experimental subjects died following the injection.
       
“You see,” explains Dr. Mandrake, “PBS shifts one’s entire time line such that our immunizations inadvertently left the subjects no time at all. At least we were able to console their families with the knowledge that a late birth means a late death: had our experiment not killed them, they actually would have died sooner.”

Of course, little of this discussion is useful to Meredith Yolk. “The worst thing about my PBS,” she complains, “is that we’ve been unable to have a child. My husband suffers from premature ejaculation, you see, and when you add his problem to mine, I think you can understand our distress. How can I get pregnant if he ejaculates before I even get home?”
       
Currently Meredith is undergoing behavior modification therapy at the Sloan-Smithson, where technicians deliberately postpone all activities to confer on their patients the illusion of punctuality. What is it like, finally, to feel on time? Meredith Yolk’s eyes well with tears. “I can’t believe it! I’m not late! Maybe one day I’ll lead a normal--even a useful--life.”