First, a disclaimer: My purpose in sharing my experiences in the illogical, upside-down world of today's U.S. health care system is NOT to denigrate the many fine individuals working as health care professionals--physicians, nurses, technicians, and all the other good folks who support the care of an endless stream of patients, many of them seriously ill.
I've been most fortunate in having access to some of the best specialists in their fields at Johns Hopkins Medical Center and the National Institutes of Health. I salute all who truly care about their patients. No doubt, they are as frustrated as I in finding themselves in this dark maze populated by wacky characters with nonsensical expectations. I know they also despair about the care, or rather lack thereof, this nation gives to its sickest patient of all--its health care system.
Today, the fun show reached another high, given how low it was. That's how it is down the rabbit hole--what's up is down and what's big is small and what's wrong is as wrong as wrong can be.
If you've followed The Mary Dell Show at all, you know I have a, well, an interesting health history. For decades I've accumulated an array of symptoms and diagnoses and a regular smattering of abnormal lab tests, some of which have not been adequately explained.
I've undergone repetitive testing as I've been referred to this or that specialist, each of whom insists on redoing tests that have been done in the past, and few of whom spend much, if any, time reading the reports and findings of other specialists. Who has time when they have to see a certain ridiculous number of patients a day to be able to afford their malpractice insurance premiums?
During my Mystery Medical Tour, however, I've also encountered far too many less-than-stellar representatives of this profession.
Though I have several stories to regale you with, today I will simply describe my visit to my cardiologist, whom I will not name other than to call him Dr. M, which at least did not leave me a screaming lunatic the way an appointment with a hepatologist (liver doc) once did.
I've seen Dr. M since February 2013 after experiencing severe shortness of breath (dyspnea) and exercise intolerance (if climbing stairs or walking a few blocks can be called exercise) on my trip to Europe when Sabine invited me to share her last days on earth with her. I knew these problems were caused by more than the stress of watching my dearest friend die, as awful as that was, and when I got home I underwent cardiac and pulmonary that revealed a number of abnormalities but have not, as yet, completely pinpointed the cause of this lack of stamina.
Fast forward to my appointment today. I hadn't seen Dr. M since my previous appointment landed me (at his suggestion) in the Emergency Department due to my blood pressure's spike that day.
After that and a call for an ambulance due to dyspnea at work that revealed hypercapnia--too much carbon dioxide and not enough oxygen in the blood, my employer wanted me to leave the job because of their worries about my obvious poor health. After I left, for a couple of months I was without insurance because of Maryland's delay in processing applications for coverage under the Affordable Care Act, so I did not fill the prescription for Norvasc Dr. M had prescribed on my previous, hypertensive visit.
I'd also felt for the first time a strange clutching sensation in my mid-chest which happened a few times over a period of three days during the midst of all the stress of losing my job and my insurance and my health in one foul (yes, I KNOW it's "fell"!) swoop.
I told Dr. M about this new clutching sensation and the ambulance episode.
He glanced at the computer screen--my electronic record--and did a cursory exam. Then he told me that since the ED visit had revealed no cardiac issues, he didn't think adding Norvasc was necessary.
In essence, he said that my heart was just fine despite some documented previous indications that it might not be, including a frightening hospitalization in 2008 when I was told I was in heart failure and had probably already had two mild heart attacks.
"So what about the cardiomyopathy?" I asked, not with an attitude, just wanting clarification.
"You don't have cardiomyopathy," he replied.
I was, of course, happy to hear this and made that clear, but I was skeptical. Hadn't that diagnosis been listed on my visit summaries each time I'd seen Dr. M?
It was Dr. M himself who stated during my first appointment with him that he suspected I may be having heart rhythm issues--but I guess he hadn't read back that far in my Electronic Health Record to see that.
After pronouncing me heart disease-free, and then listening my subsequent questions, Dr. M spent a few scant moments examining not me, the person on the table, but me, the digital patient, the one on the screen.
Then he turned to me and said, "You've had some indications that may have suggested cardiomyopathy in the past--"
"Like the LVH and stuff?"
More glancing at the screen. "Okay, tell you what, let's just be sure and do another echocardiogram today."
One advantage of going to Dr. M is his having testing equipment and technicians right there at the office, and I was taken right in for the procedure--no wait for an appointment at the local hospital or diagnostic center. An echo is not an invasive test; it doesn't hurt. You simply lie on your side while the technician rolls a lubricated camera over your bare chest that provides imaging on her computer screen that she marks and measures for the doctor's subsequent analysis. The whole thing takes about 15 minutes, and she told me Dr. M would give me the results that day.
A few minutes later Dr. M came into the room.
"It looks good," he said, and again I smiled with relief. Maybe keeping my BP down and not having all the stress of work anymore had healed whatever had been ailing my ticker.
But I had a feeling he'd say more, and he did: "There is still some stiffening, so I'm going ahead with that Norvasc anyway."
Sigh. If I hadn't spoken up, had just gone along with his pronouncement that I was cardiomyopathy-free and did not need the Norvasc, what might have happened if my body needs that medicine?
I don't dislike Dr. M, but his lackadaisical style does not inspire confidence. While checking out, I read the summary of the day's visit, and the diagnosis of cardiomyopathy was listed as "active," so I guess I do have it after all, which doesn't surprise me in the least.
I then asked for a copy of my file--I want to give a copy to my new neurologist at Hopkins, and I keep a copy of all my records myself--and when I got home and began reading I was in for a few more shocks as to how little Dr. M really knows about me or my condition. He writes lovely reports, and I was impressed with his memory of what we'd talked about at each appointment since he never writes anything down or types anything into my record--just pretty much in and out, lickety split.
He's obviously an extremely bright man. However, he also got a lot of things wrong. These EHR computer programs prompt users with questions relating to a patient's conditions, with many of them simply requiring a "yes" or "no" answer, and I suspect that is where some of the problem comes in. Dr. M's narrative was great, but he must have clicked "yes" for "no" and vice versa for some of those standard questions, since they did not match my experience at all.
I suspect he'd merely not asked those questions at all and guessed at their answers. Many doctors either go through the electronically generated questions with the patient and enter the answers right into the computer or have a nurse or technician do that during the visit, but Dr. M did neither and, despite an impressive memory, obviously did not have an impeccable memory--a fact that potentially compromises my care and the care of all his patients when he relies on it this way.
Unfortunately, I don't believe for a minute that Dr. M is alone in this, and this reliance on digital health care is more than a little scary.
We are not 2-D patients comprised of nothing but pixels; we are not mass produced with cookie cutters; many of us are zebras in a world of horses, and we need physicians willing to look beyond the obvious or even the digital readout and apply a diagnostician's critical thinking to problem patients like us. A lot of pain and deterioration could be avoided with early attention to signs and symptoms that may seem mild or unimportant at the time.
How many patients even get a copy of their electronic health records, let alone read them and note inaccuracies? It's not our job anyway, is it? But it is our life, and ours alone.
I have had to follow my own medical case like a caseworker, research it like the medical librarian I am trained and educated to be, fight like an attorney for certain interventions , and analyze all the data like the newfangled medical record analysts being hired all over the country to do the job that true diagnosticians would do themselves had they the time to do. What if I'd never learned to properly seek out answers like the Medical Detective (MD) I've been forced to become?
This does not bode well for the average patient. It bodes even worse for the socioeconomically disadvantaged or critically ill patient.
And the most seriously ill patient this bodes badly for is the U.S. health care system.
The answers are NOT to be found on a screen, no matter how good the data.The answers will only be found when we stop allowing the tail to wag the dog and give physicians the time and means to get to know each and every one of their patients, as they did back in the "good old days," and apply that firsthand knowledge to each new medical challenge for each individual patient. Let them look at us, not a computer screen--and maybe they will see who we are, and how we are suffering.
The system will NOT be fixed by technology or by attempting to save costs by spending big dollars to hire a slew of reviewers to yay or nay tests and procedures ordered by physicians and others to analyze patient records when, in fact, costs are jacked up all over the place by the extra layers of regulation and insurance requirements that benefit these corporations' CEOs far more than any patient.
Many innovations in health care, no matter how distasteful they may be, will no doubt yield benefits, but they cannot and will not replace good, old-fashioned training, experience, and judgment on the part of a practitioner who knows his or her patient and his or her history, personality, and specific issues. And not only knows each patient, but listens to what those patients have to say and respects them enough to take their concerns and theories seriously.
Electronic health records cannot replace the patient, no matter how complete computer programmers attempt to make them and no matter how much nicer it may be to look at a screen over the flesh and blood and fear of a sick patient.
These problems are not due to Obamacare, though the Affordable Care Act has added its own layers of fat and waste to the system despite its goal of reducing same. I'm grateful Obamacare passed--I would otherwise now be without any insurance at all since I can no longer work and have no income, and I firmly believe that affordable, high quality health care is a right to which every U.S. citizen--every citizen of the world--is entitled.
Each one of us will be a patient at one time or another. And each one of us will experience these disconnections in a system whose goals relate to just about everything but the individual patient's needs. I'm talking about you and me, my friend. You and me and our digital records, not necessarily in that order.
By the way, I haven't even mentioned the privacy issues related to EHRs. A person who lives in my area commented on Facebook that she works at one of the local sheriff's offices as a volunteer, and when she's bored she looks up the psychiatric records of everyone she knows.
So much for limited access and protection of our privacy.
God help us all.
[Edited January 31, 2014]
I've been most fortunate in having access to some of the best specialists in their fields at Johns Hopkins Medical Center and the National Institutes of Health. I salute all who truly care about their patients. No doubt, they are as frustrated as I in finding themselves in this dark maze populated by wacky characters with nonsensical expectations. I know they also despair about the care, or rather lack thereof, this nation gives to its sickest patient of all--its health care system.
Today, the fun show reached another high, given how low it was. That's how it is down the rabbit hole--what's up is down and what's big is small and what's wrong is as wrong as wrong can be.
 |
| Don't fall in, Alice! It's scary as hell down there. |
If you've followed The Mary Dell Show at all, you know I have a, well, an interesting health history. For decades I've accumulated an array of symptoms and diagnoses and a regular smattering of abnormal lab tests, some of which have not been adequately explained.
I've undergone repetitive testing as I've been referred to this or that specialist, each of whom insists on redoing tests that have been done in the past, and few of whom spend much, if any, time reading the reports and findings of other specialists. Who has time when they have to see a certain ridiculous number of patients a day to be able to afford their malpractice insurance premiums?
During my Mystery Medical Tour, however, I've also encountered far too many less-than-stellar representatives of this profession.
Though I have several stories to regale you with, today I will simply describe my visit to my cardiologist, whom I will not name other than to call him Dr. M, which at least did not leave me a screaming lunatic the way an appointment with a hepatologist (liver doc) once did.
I've seen Dr. M since February 2013 after experiencing severe shortness of breath (dyspnea) and exercise intolerance (if climbing stairs or walking a few blocks can be called exercise) on my trip to Europe when Sabine invited me to share her last days on earth with her. I knew these problems were caused by more than the stress of watching my dearest friend die, as awful as that was, and when I got home I underwent cardiac and pulmonary that revealed a number of abnormalities but have not, as yet, completely pinpointed the cause of this lack of stamina.
Fast forward to my appointment today. I hadn't seen Dr. M since my previous appointment landed me (at his suggestion) in the Emergency Department due to my blood pressure's spike that day.
After that and a call for an ambulance due to dyspnea at work that revealed hypercapnia--too much carbon dioxide and not enough oxygen in the blood, my employer wanted me to leave the job because of their worries about my obvious poor health. After I left, for a couple of months I was without insurance because of Maryland's delay in processing applications for coverage under the Affordable Care Act, so I did not fill the prescription for Norvasc Dr. M had prescribed on my previous, hypertensive visit.
I'd also felt for the first time a strange clutching sensation in my mid-chest which happened a few times over a period of three days during the midst of all the stress of losing my job and my insurance and my health in one foul (yes, I KNOW it's "fell"!) swoop.
I told Dr. M about this new clutching sensation and the ambulance episode.
He glanced at the computer screen--my electronic record--and did a cursory exam. Then he told me that since the ED visit had revealed no cardiac issues, he didn't think adding Norvasc was necessary.
In essence, he said that my heart was just fine despite some documented previous indications that it might not be, including a frightening hospitalization in 2008 when I was told I was in heart failure and had probably already had two mild heart attacks.
"So what about the cardiomyopathy?" I asked, not with an attitude, just wanting clarification.
"You don't have cardiomyopathy," he replied.
I was, of course, happy to hear this and made that clear, but I was skeptical. Hadn't that diagnosis been listed on my visit summaries each time I'd seen Dr. M?
It was Dr. M himself who stated during my first appointment with him that he suspected I may be having heart rhythm issues--but I guess he hadn't read back that far in my Electronic Health Record to see that.
After pronouncing me heart disease-free, and then listening my subsequent questions, Dr. M spent a few scant moments examining not me, the person on the table, but me, the digital patient, the one on the screen.
Then he turned to me and said, "You've had some indications that may have suggested cardiomyopathy in the past--"
"Like the LVH and stuff?"
More glancing at the screen. "Okay, tell you what, let's just be sure and do another echocardiogram today."
One advantage of going to Dr. M is his having testing equipment and technicians right there at the office, and I was taken right in for the procedure--no wait for an appointment at the local hospital or diagnostic center. An echo is not an invasive test; it doesn't hurt. You simply lie on your side while the technician rolls a lubricated camera over your bare chest that provides imaging on her computer screen that she marks and measures for the doctor's subsequent analysis. The whole thing takes about 15 minutes, and she told me Dr. M would give me the results that day.
A few minutes later Dr. M came into the room.
"It looks good," he said, and again I smiled with relief. Maybe keeping my BP down and not having all the stress of work anymore had healed whatever had been ailing my ticker.
But I had a feeling he'd say more, and he did: "There is still some stiffening, so I'm going ahead with that Norvasc anyway."
Sigh. If I hadn't spoken up, had just gone along with his pronouncement that I was cardiomyopathy-free and did not need the Norvasc, what might have happened if my body needs that medicine?
I don't dislike Dr. M, but his lackadaisical style does not inspire confidence. While checking out, I read the summary of the day's visit, and the diagnosis of cardiomyopathy was listed as "active," so I guess I do have it after all, which doesn't surprise me in the least.
I then asked for a copy of my file--I want to give a copy to my new neurologist at Hopkins, and I keep a copy of all my records myself--and when I got home and began reading I was in for a few more shocks as to how little Dr. M really knows about me or my condition. He writes lovely reports, and I was impressed with his memory of what we'd talked about at each appointment since he never writes anything down or types anything into my record--just pretty much in and out, lickety split.
He's obviously an extremely bright man. However, he also got a lot of things wrong. These EHR computer programs prompt users with questions relating to a patient's conditions, with many of them simply requiring a "yes" or "no" answer, and I suspect that is where some of the problem comes in. Dr. M's narrative was great, but he must have clicked "yes" for "no" and vice versa for some of those standard questions, since they did not match my experience at all.
I suspect he'd merely not asked those questions at all and guessed at their answers. Many doctors either go through the electronically generated questions with the patient and enter the answers right into the computer or have a nurse or technician do that during the visit, but Dr. M did neither and, despite an impressive memory, obviously did not have an impeccable memory--a fact that potentially compromises my care and the care of all his patients when he relies on it this way.
Unfortunately, I don't believe for a minute that Dr. M is alone in this, and this reliance on digital health care is more than a little scary.
We are not 2-D patients comprised of nothing but pixels; we are not mass produced with cookie cutters; many of us are zebras in a world of horses, and we need physicians willing to look beyond the obvious or even the digital readout and apply a diagnostician's critical thinking to problem patients like us. A lot of pain and deterioration could be avoided with early attention to signs and symptoms that may seem mild or unimportant at the time.
How many patients even get a copy of their electronic health records, let alone read them and note inaccuracies? It's not our job anyway, is it? But it is our life, and ours alone.
I have had to follow my own medical case like a caseworker, research it like the medical librarian I am trained and educated to be, fight like an attorney for certain interventions , and analyze all the data like the newfangled medical record analysts being hired all over the country to do the job that true diagnosticians would do themselves had they the time to do. What if I'd never learned to properly seek out answers like the Medical Detective (MD) I've been forced to become?
This does not bode well for the average patient. It bodes even worse for the socioeconomically disadvantaged or critically ill patient.
And the most seriously ill patient this bodes badly for is the U.S. health care system.
The answers are NOT to be found on a screen, no matter how good the data.The answers will only be found when we stop allowing the tail to wag the dog and give physicians the time and means to get to know each and every one of their patients, as they did back in the "good old days," and apply that firsthand knowledge to each new medical challenge for each individual patient. Let them look at us, not a computer screen--and maybe they will see who we are, and how we are suffering.
The system will NOT be fixed by technology or by attempting to save costs by spending big dollars to hire a slew of reviewers to yay or nay tests and procedures ordered by physicians and others to analyze patient records when, in fact, costs are jacked up all over the place by the extra layers of regulation and insurance requirements that benefit these corporations' CEOs far more than any patient.
Many innovations in health care, no matter how distasteful they may be, will no doubt yield benefits, but they cannot and will not replace good, old-fashioned training, experience, and judgment on the part of a practitioner who knows his or her patient and his or her history, personality, and specific issues. And not only knows each patient, but listens to what those patients have to say and respects them enough to take their concerns and theories seriously.
Electronic health records cannot replace the patient, no matter how complete computer programmers attempt to make them and no matter how much nicer it may be to look at a screen over the flesh and blood and fear of a sick patient.
These problems are not due to Obamacare, though the Affordable Care Act has added its own layers of fat and waste to the system despite its goal of reducing same. I'm grateful Obamacare passed--I would otherwise now be without any insurance at all since I can no longer work and have no income, and I firmly believe that affordable, high quality health care is a right to which every U.S. citizen--every citizen of the world--is entitled.
Each one of us will be a patient at one time or another. And each one of us will experience these disconnections in a system whose goals relate to just about everything but the individual patient's needs. I'm talking about you and me, my friend. You and me and our digital records, not necessarily in that order.
By the way, I haven't even mentioned the privacy issues related to EHRs. A person who lives in my area commented on Facebook that she works at one of the local sheriff's offices as a volunteer, and when she's bored she looks up the psychiatric records of everyone she knows.
So much for limited access and protection of our privacy.
God help us all.
[Edited January 31, 2014]
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