|Since you're all so busy|
I'll take care of MYSELF!
(March 31, 2013) Under today's greed-driven, production-line health-care system, doctors apparently don't have time to take care of patients properly. I have the time, and I have the Internet. I want to be the Doctor In Charge of Me. If I screw up, that's my problem. But I really think things are already about as screwed up as they can get.
Medical care has become a numbingly impersonal, sloppily organized, hugely bureaucratized, scarily negligent, and thoroughly exhausting process.
I understand that most people are too busy to take charge of their own care, and the majority wouldn't want to, anyway. But I am tired of feeling like a slab of diseased meat on a factory-farm conveyor belt. I want to be cured -- at least as cured as cured meat! -- and I want the right to do it my way.
|I'll cure my own meat, thank you.|
I am tired of waiting on the phone, waiting in the waiting room, being subjected to a brusque, superficial and rushed exchange with a doctor and then being abandoned to fend for myself. I'd rather fend for myself from the start, and stop wasting so much time.
I am tired of being misdiagnosed. I am tired of contradictory diagnoses with conflicting explanations and "treatments." Most of all, I am tired of being given no diagnosis ("It's mysterious," they say. Or, "It's of indeterminate etiology." Or, "these processes are poorly understood." Or, "current thinking on this is in flux.").
"Modern medicine," despite all the cool, high-tech bells and whistles -- and the gleaming veneer of scientific certainty -- is really quite primitive in many respects. Doctors prefer to phrase it in a more elegant (and self-serving) way: "It's more art than science."
Oh great! If only they were more artistic!
The system leaves me feeling powerless, trapped and intimidated, plodding from one place to another, making my way through a warren of busy hallways, onto another elevator and into another line. Kafka comes to mind, and so does a chilling memory of the Soviet Union (I was encouraged to see that the New York Times also regards the system as "downright Kafkaesque"). In this world, I am an account number, not a person. They put a pink paper ID bracelet on me, like I'm a little girl who might forget who she is.
|I know who I am, but I forgot why I'm here.|
I always put off seeing a doctor -- for days, weeks, even months -- preferring to begin, as lightheartedly as possible -- with the question: "What would Cleopatra do?" Before surrendering myself to the clutches of modern medicine, I try every reasonably promising self-help or holistic approach I can find, for whatever is ailing me. "Watchful waiting" is often all that is required. Even conditions that are quite distressing or unsightly usually seem to resolve on their own, if one gives them time.
In my ideal world, I would like to be able to enlist doctors to be my consultants when I get in over my head, need a physical assessment or want a "second opinion." I would go to the clinic if necessary to see the doctor; otherwise, I communicate via email or phone, and compensate the doctor for his time.
But in today's system, when I eventually admit defeat and seek "expert help," I keep forgetting that the "help" almost inevitably turns me into a "Ball of Confusion," to cite a 1970s hit by the Temptations: "Aggravation, humiliation, obligation."
|Sing it brothers! I'm confused as hell!|
Virtually every time I leave a physician's office, I am in a daze. I had arrived so hopefully, with my little list of questions. What just happened, between the time he dashed in (almost an hour late) and dashed out? Most doctors never even look me in the eyes, much less touch me. No way, lady! We have apps for that!
Do I know any more now than I did when I got here? Was I given an understandable and promising game plan for addressing my issues? Do I sense that I have a partnership with someone who actually cares about me, or at least has some vague grasp of what is wrong with me?
The answer is no. I feel worse than I did when I arrived, and I'm not alone. I don't know one person who is satisfied with his or her medical care, except for a few friends who have had high-tech surgery -- that cost tens or hundreds of thousands of dollars -- to reinforce a spine, replace a joint or refurbish a heart. Everyone else is disillusioned -- if not indignant -- both by what they have to go through to receive care, and by the quality of the care itself. That's why I'm asking for greater latitude in caring for myself. I have more faith in my determination than I do in the health-care system.
"There is no more wasteful entity in medicine than a rushed doctor." (http://www.nytimes.com/2014/07/21/opinion/busy-doctors-wasteful-spending.html?mabReward=RI%3A5&action=click&pgtype=Homepage®ion=CColumn&module=Recommendation&src=rechp&WT.nav=RecEngine).
I wish I could have a doctor who knows me. I need and deserve a primary caregiver who is familiar with my history, feels some responsibility for my well-being, understands my idiosyncrasies, and is able to "manage" my so-called managed care.
I will discuss in a future post how the establishment prevents our family doctors from doing this.
It's a tough job, but somebody's got to do it.
Doctors can't. I can.
Doctors aren't. I am.
I AM THE 'DEAR LEADER' OF MY OWN TERRITORY
The notion of being a curator -- which until recently was confined to the art world -- is being bandied about in all sorts of contexts these days.
|It will give my brain's 'executive functioning' a good workout.|
In order to do it myself,, I need the medical establishment to relinquish some of its stranglehold on patient care and let me have the freedom to be the Boss of my Own Body. Doesn't that seem reasonable? To put it more strongly: Whose business is it but mine?
I would gladly sign a release form, freeing the system of all liability, if I could have greater autonomy. Opt me OUT of that cold, debilitating, never-ending ride that Dan Rather (bless his histrionic heart) might characterize as "Nightmare on Health-Care Street."
I want to diagnose my own ailments, write my own prescriptions (except for controlled substances), order my own imaging and determine my own treatment. I'm practically doing it already. If I didn't faint so easily when I see pulsing, bloody organs, I'd try performing my own surgeries as well.
|Grab me the text on intestinal hemorrhage, would you?.|
Now that I have access to the Worldly Wide World of information, I'm even bossier. In Doctorland, that makes me a "problem patient."
DIAGNOSIS: DELUSIONS OF GRANDEUR
My do-it-yourself attitude toward health care must surely sound arrogant and foolhardy, especially to those who struggled through years of training to become medical professionals.
They might snap: "What a wacko. She sure thinks she's smart."
No, I don't think I'm particularly smart. I think I can read, and everything about everything is out there on the Web, some of it written by and for doctors, some for lay people. When I encounter a word I don't understand, I have acquired this skill called "looking it up."
Thanks to the advent of the Internet, there has been an immeasurable empowerment of average people in becoming actively involved in their own wellness. They've discovered that, in many instances, they don't need a doctor after all. They find a solid diagnosis of their symptoms, and they learn how to address them. Or maybe they just gain a greater understanding of how their bodies are supposed to function, and seek a doctor's help in restoring themselves to normalcy.
|And don't think your doctor isn't Googling like crazy when says, "I'll be right back!"|
We'll always need doctors, of course, just as we'll always need a plumber, when we can't unclog the damned drain ourselves. But those of us who wish to avoid the medical establishment as much as possible can carve out a sphere in which we are able operate independently.
I'm asking that the sphere be expanded.
INTERNET USE IS VIRAL AND CONTAGIOUS!
Doctors dismiss this vainglorious uprising of the uncredentialed masses as naive and dangerous. They denigrate the quality of information on the Internet, when in fact the very best information in the world is online; the nation's finest hospitals, foundations, advocacy organizations, federal and state public health agencies, best-selling medical authors, professional journals and scholarly institutions provide detailed, understandable information for lay people on a comprehensive array of health matters.
|Just hit "enter," and you'll have access to the greatest knowledge on Earth!|
The Internet also contains a mind-boggling mudflow of misinformation -- some based on greed, some on naivete. It doesn't take a genius to distinguish between health sites that are reliable and those that are not.
The medical monopoly makes way too much of this issue, obviously because its dominance is being seriously jeopardized by empowered patients, who are coming to regard doctors as servants, not masters. Doctors have lost a whole lot of status in the past several decades. Their castigation of the Internet is just one more desperate move to protect their pre-eminence.
Of course, I would never, ever imply that I know more than a doctor does. But just imagine how much complex data doctors crammed into their brains during their training. How much of what you learned in school do you remember? Doctors are not superheroes.
They remember the knowledge they use regularly. The rest of it fades, to some degree.
There's also the little problem of explosive medical research and grand new theories that are swirling all over the world. Every day, dozens of new findings are published in medical journals, and it's just the "sexiest" ones that create a stir on the nightly news. Every month, dozens of medical journals publish major papers that affect the way in which aspects of disease etiology, treatment paradigns and prognosis are presented.
I wonder how many doctors keep up with all of this.
I don't keep up with it, of course. I look for it if and when I need it. And there it is waiting for me. (I once relayed an intriguing theory about Vitamin D to a doctor and asked his opinion. He scoffed and said, "Where did you dredge up such a reckless idea?" I responded, "This month's issue of The Journal of Rheumatology."
Sorry, Mr. Rheumatologist! You shouldn't scoff! You just make yourself look stupider!
(My forthcoming post -- "Doctor Who? Dr. You" -- will provide tips on taking greater responsibility for your health care now.)
The additional latitude I want isn't yet an option, but I'm chipping away at the barriers.
IN SICKNESS AND IN WEALTH
The many-tentacled monstrosity known as "the health-care system" is no longer a service sector devoted to its clients' well-being.
|It's hard to disentangle yourself without being called "mavericky," like Sarah Palin.|
It is morbidly obese. It suffers the systemic effects of chronic stress. It is bipolar in its pretensions of providing "compassionate care" versus its goal of getting rich, richer and even more fabulously rich. Its "split personality" extends to the role of the doctor, who wants to be a lofty authority figure and magical healer but is, in practice, a servile clerk, answerable to numerous entities -- with their various criteria and benchmarks and codes -- and under constant critical scrutiny
Obviously, medicine has become a business, not a profession, and much of it is fundamentally corrupt. Like so many aspects of our lives, it has become commoditized, and at each stage of this process, "tweaks" are made to cut costs and maximize profits in ways that often degrade the quality of care. This facet of the U.S. economy may well encompass more hucksters, shysters and fly-by-nighters -- as well as the more polished white-collar criminals -- than any other. Billions of dollars are flying around. New business endeavors are created every day to get in on this game.
It's "a uniquely American gold rush for those who provide everything from wonder drugs to canes to high-tech implants to CT scans to hospital bill-coding and collection services," according to a superb article by Steve Brill in the February 20, 2013, issue of Time magazine.
The "gold rush" to which he refers is a very well organized and strategized rush, which spends more than three times as much as the military-industrial complex does on lobbying in Washington, he notes.
UPDATE July 15, 2014: Oh great -- Big Pharma is getting even bigger -- and evading billions in U.S. taxes -- by buying smaller overseas competitors and reincorporating abroad — a maneuver called inversion. Medical device firms are doing the same. (http://dealbook.nytimes.com/2014/07/14/shire-and-abbvie-in-talks-over-53-billion-pharmaceutical-merger/?_php=true&_type=blogs&hp&action=click&pgtype=Homepage&version=HpSumSmallMediaHigh&module=second-column-region®ion=top-news&WT.nav=top-news&_r=0).
|"Thank you for choosing such a wonderful career, darling!"|
Doctors become partners in "practices," which own the imaging, lab, physical therapy and outpatient surgery facilities to which they refer you. They are also locked in an unseemly embrace with pharmaceutical and medical-device firms, which entice them with royalties, stock options, consulting agreements, research grants, honoraria, kickbacks, gifts and luxury getaways.
They rarely if ever report adverse reactions or product malfunctions, as required by the FDA, because their financial ties to the industries create a sense of "loyalty and friendship" that would be violated if they spoke out, according to a February 17 New York Times article. (They are also "too busy to do the paperwork" of filing a report, the article adds.)
Your health care is their wealth-fare.
(Today – Oct. 17, 2013 -- the government shutdown has ended, and the medical-device industry, which waged an intense lobbying campaign, says it has garnered enough support to achieve a full repeal of the excise tax by early next year. Medical-device manufacturers allocate only a sliver of profits to research and development The industry’s enormous profits are a result of anticompetitive practices. Exorbitant prices fuel enormous profits — profits that dwarf both the medical-device tax and the industry’s investments in research and development. The United States spends about 50 percent more on the top five medical devices, compared with Europe and Japan, leading to $26 billion annually in excess spending, according to Topher Spiro, vice president for health policy at the Center for American Progress. http://www.nytimes.com/2013/10/17/opinion/the-myth-of-the-medical-device-tax.html?hp&_r=0. )
DOING THE CHA-CHA CHING
Doctors are also in an awkward but mutually beneficial dance with the insurance industry, and they milk Medicare for everything it's worth. As the media have reported for years, doctors are hugely incentivized to order diagnostic scopes, scans and biopsies.
They are incentivized little if at all to offer counseling and wellness care. They are motivated to prescribe drugs that are not necessarily in the patient's interests, as Big Pharma monitors their prescribing practices and responds accordingly.
According to a Jan. 4 story in the New York Times, drug firms also pay doctors thousands of dollars for each patient they enlist in clinical trials -- unbeknownst to the patients, who rarely get any compensation whatsoever.
Doctors spend less and less time with us. They charge us more. Then, if they can possibly justify it, they send us to have surgery at outpatient surgical centers of which, naturally, they are part owners. Doctors with such vested interests perform vastly more those who do not, rather than steering you to nonsurgical options. I have noticed that when you go to these outpatient facilities, they demand full payment at check-in. Neither insurance companies nor Medicare pays anything. To me this has a quite striking reflection on the legitimacy of these doctor-owned centers. Medicare pays for lots of crazy stuff. If it doesn't pay for this, it must really be "out there."
And then you'll most certainly be sent to their physical therapy clinics, which are pure money-making machines. They charge you $100 for plopping an ice pack on your knee. Then they charge $100 for a heating pad. I was charged $75 for a five-minute session with a TENS unit. I bought my own for under $50. Every teensy thing they do is itemized. It is such a con game, I can't believe it. I must admit, though, that the few physical therapists I've met are great people -- dedicated, patient and well-informed. They've just gotten seduced by the same pot of gold as everyone else.
|Investing in health care has become an excellent gamble.|
Whatever the case, as the nation’s population ages and increasingly gets knees, hips and other joints repaired or replaced, demand for physical therapy treatments has been on the rise — and so has fraud. Billing for physical therapy services has come under heightened scrutiny by regulators and law enforcement in recent years, leading to numerous crackdowns and raids of physical therapy clinics around the country." ( http://www.nytimes.com/2014/04/28/business/one-therapist-4-million-in-2012-medicare-billing.html?hp&_r=0)
Private practices are being bought up by hospitals at an astonishing rate, as noted by a New York Times article in December, 2012. Then, those hospitals are bought up and transformed into "chains." Hospital executives make six-figure salaries; most executives who oversee chains of hospitals make well over a million dollars a year. Hospital chains are acquired by Wall Street money men who bundle them like subprime mortgages and throw them into the marketplace. The same thing, as I have previously documented, is happening with nursing homes and long-term care facilities. Fat cats and emaciated oldfolks -- yet another ill-conceived all-American pairing, kind of like Laurel and Hardy. (An article in the Aug. 9, 2014, New York Times refers to
Community Health Systems, a publicly traded hospital operator that owns 206 hospitals in 29 states and has 4.5 million patients. This is exactly the kind of consolidation and monetization that puts patients last and stockholders first. It is a terrible trend, but it seems unstoppable.)
|"Why do you have to be so puny and pathetic?"|
NONE DARE CALL IT 'UNCONSCIONABLE'
For example, although MD Anderson Medical Center in Houston is officially a nonprofit unit of the University of Texas, its most recently published operating profit was $531 million -- a profit margin of 26 percent.
"The president of MD Anderson is paid like someone running a prosperous business," Time writer Steve Brill adds. "Ronald DePinho’s total compensation last year was $1,845,000. That does not count outside earnings derived from a much publicized waiver he received from the university that, according to the Houston Chronicle, allows him to maintain unspecified financial ties with his three principal pharmaceutical companies."
The hundreds of "nonprofits" across the country are highly profitable, and their non-doctor administrators get six- to seven-figure salaries. Think how profitable the admittedly profit-making hospitals must be! Could that be why it costs so much to go to a hospital? Could that be why everything on your bill is marked up by several hundred percent to several thousand percent?
|Costs put patients in a state of emergency.|
Medicine, as most of us have probably sensed by now, is not a patient-centered apparatus anymore. It has a life of its own. We are the little people, whose job it is to feed the beast. We are the lifeblood of its cold and creepy heart.
There are hundreds of thousands of people who are employed by the health-care sector. I would be derelict if I didn't note that the clerical and intake people, the technical people (ie imaging and lab), the "paraprofessionals," (ie medical assistants and hospital aides) are kind and competent folks who go above and beyond the call of duty every day in their dealings with patients. Most of them get lousy pay. They are to be admired.
MARKETING MEDICINE AS IF IT WERE A COUTURE COLLECTION
I have gotten increasingly less satisfied with so-called "care," even as the system has become "bigger and better." Like other institutions, the players within the Medical Monolith have become single-mindedly focused on their scrupulously contrived "branding" and image, their "competitive edge," their "penetration" into "desirable demographics," their ever-more vast, sleek facilities, their efficiency-gauging "interoperable work-flow solutions," their need to expand their "user pools," their new "revenue-generating services," and their "profit trajectory."
|What do we lose when our provider becomes a "brand"?|
SYSTEMIC INFLAMMATION, MASSIVE BLOATING
The aggravation begins the moment you decide to see a doctor. Unless you go to a sole practitioner or small clinic -- both increasingly rare these days -- you make the call and get put on hold until "the next available representative" can assist you. Meanwhile, you'll have that brain-bloodying pollution known as Muzak blowing into your ear, and that's if you're lucky.
|"The Sound of Muzak" by BlitzGraphics|
HARDWARE, SOFTWARE. HUMANS ARE THE 'WETWARE'
The voice sounds like it's the creation of high-tech device that has been painstakingly calibrated to sound glowingly (but eerily) warm, soothing and hypnotic. Maybe the doctor will be a robot or a hologram, too. Either might be an improvement on that "wetware" known as homo sapiens.
THEIR NEW CAROTID ARTERY ULTRASOUND PROCEDURE
|"We just bought this great new machine for a |
quarter-million dollars. And we need you to use it, so we
can pay for it! This is a totally urgent situation!"
HEIL HEALTH CARE!
At some facilities you will also be subjected to a storm trooper-style diatribe while you wait: "It is our policy that YOU MUST PAY IN FULL at the time of service. You MUST bring proof of ID and insurance. If you do not bring proof, YOU WILL NOT BE SEEN. You may not obtain a prescription refill without a clinic visit -- NO EXCEPTIONS. If you cancel within less than 24 hours of your appointment, YOU WILL BE CHARGED a $50 fee. Thank you for your patience. We are experiencing an unusually high volume of calls. Your call will be taken in the order received. We value your patronage."
Shut up! Is this a reasonable way to treat people who aren't feeling well?
|Take my call NOW, you stupid freaks!|
When you finally reach a human being, her first question will be, "What kind of insurance do you have?"
(If your answer is "Medicare," are likely to notice a change in her tone.)
After all of this time you've spent on hold (usually between five and 25 minutes) -- and disregarding all the other factors about you as a patient that are important (are you in severe pain? are you acutely ill?) -- the first thing on their minds is money, Money and MONEY.
TAKE TWO BULLETS, AND CALL ME IN THE HEREAFTER
Other issues might crop up as well. Do you have a referral? You must have a referral. The doctor is not accepting Medicare patients at this time. The doctor is not accepting new patients for the foreseeable future. Your doctor has left to spend more time with her children. Your doctor regrets to inform you that he has decided to focus full-time on his oncology patients. Be advised that his internal-medicine colleagues at this facility have full caseloads.
One rheumatologist's office I called required that you pay $50, via credit card, just to make an appointment. The sum would be deducted from your bill, I was told, if you actually "showed up."
|Arranging to see a doctor seems like a survival of the fittest contest.|
The wait for a complete physical by a primary care doctor can be just as long.
When you initially decided to call and get an appointment, you were feeling sick enough that you thought you'd better see a doctor. How are you feeling now? In my case, the answer is: a whole lot sicker. How much time have I been sitting here, waiting and waiting, just to get things arranged? And how many times did I have to swallow my pride and feel disrespected during that process?
Gird up, ye who are afflicted. Your burdens will only increase when the time for your appointment finally arrives.
RELATED POSTS in this package:
"An Appointment with Disappointment"
Now you're really feeling sick.
"Doctor Who? Doctor You!"
(Avoid the medical monolith, and take excellent care of yourself. It's thrilling!)
"My Primary Concern"
(currently filming in Slovenia)