The following narrative is based largely on a series of emails I received from my dear friend Prof. Frank Harrison, III. Since the time this piece was written, Frank has also undergone a successful coronary artery bypass graft (CABG) surgery and is slowly but surely recovering. My best efforts at getting this piece published as a commentary in a variety of different journals met with no success. Consequently, I thought I'd put it up on the blog for at least a few persons to read. Of course, if you happen to be the editor of a newspaper or journal and would like to run the story, please let me know. As much as I'd like to claim some semblance of fame, I can assure you that prior "publication" on this blog is unlikely to put a dent in your readership.
Just Plain Tired
A professor's journey to diagnose and treat the source of his fatigue demonstrates the challenges patients face in navigating the health care system--even with a medical home.
A Dear Friend
I have had the pleasure of knowing Prof. Frank Harrison III for the past eight years. Frank is a charming and distinguished southern gentleman--and, he might be quick to add--an Episcopalian. Born and raised in Jacksonville, Florida, he pursued his education at Sewanee and the University of Virginia, and since 1962 he has taught philosophy at the University of Georgia where his outstanding teaching has been repeatedly recognized.
More than this, however, Frank is a dear friend to those whose lives have intersected with his own, be they students, colleagues, or neighbors. Whether in or out of the classroom--he affectionately refers to a local wine bar as his "downtown office"--Frank is always teaching anyone who is willing to learn. So, I should not have been surprised when Prof. Harrison opened my eyes to the need to make the health care system work better for patients. Still, I was taken aback.
No Place Like Home? There is much evidence to suggest that an increased emphasis on primary care would produce better health outcomes and cut costs. Yet there is also evidence to the contrary. For instance, the U.S. has more primary care physicians per capita than most other OECD countries, but higher per capita health care spending as well. Still, primary care--in the context of the so-called patient-centered medical home (PCMH)--is offered up as a solution to the country's health care crisis. But can it really deliver on that promise?
The PCMH--first described by the American Academy of Pediatrics in 1967--is not a new concept. The essentials of the PCMH are these: A patient has a usual source of primary care who directs the activities of ancillary care providers, coordinates care between specialists, hospitals, and other health care providers, and employs evidence-based practice guidelines and information technology to facilitate the delivery of high quality care. Patient-centeredness refers to the priority placed on the wishes of the patient by keeping them fully-informed of their diagnosis and treatment options, actively involved in decision-making, and generally cared for in a compassionate manner. In short, it is the system working for patients, rather than the other way around. As Frank's experience demonstrates, however, the promising potential of having a usual source of primary care--the extent to which a medical home is patient-centered and able to coordinate care--remains constrained by the system within which it operates.
The Long and Winding Journey
As you know, my health has not been the best in the last couple of years and I have been pursuing various physicians to attempt to discover what is the matter and to treat whatever it is.
It began several years ago when I continually complained to my internist about being frequently tired. He finally scheduled me for an "overnight" sleep apnea test. It was discovered that I had sleep apnea and was put on a c-pap machine to regulate my breathing as I slept. Before using the machine I was having some 32 "episodes" per hour wherein I would stop breathing.
I wore the machine religiously (that is to say, regularly) for over a month. There was absolutely no change in the way I felt (tired), nor was there a change in the number of episodes that I was having. Re-examining the test results, my internist said that I had, at best, a borderline case of sleep apnea, and not to wear the machine, which was obviously doing no good. I was relieved and stopped using the dratted thing.
Tottering along over a couple or so drawn out years, I kept complaining to the internist about my tiredness. This condition was a bit odd due to the fact that all of my blood tests, pulse, heart beat, and the like were absolutely in the "mid zone" of where they ought to be -- neither too high nor too low.
Something was wrong, however. Thus, my internist scheduled for another overnight sleep disorder test. I was diagnosed with central sleep apnea caused by the brain sending out irregular signals. But, this time wearing a v-pap machine (it is a fancy monster), my episodes were reduced to NONE. I was told that shortly I would be better than new. As a matter of fact I did not begin to feel any better at all.
Next I was sent to a pulmonary expert ("pulmonary" sounds more professional than "lung" -- especially at the prices). There it was discovered that I am in the beginning stages of a couple of lung disorders: emphysema and bronchitis. This was after taking a host of various tests in various machines. If nothing more, I am helping the economy. I was placed on a "puffer" which I use twice a day and my blood oxygen rate went to 95% and, once more, I was told that I was going to feel ever so much better. Humbug! Not only did I not begin to feel "ever so much better," I constantly was (am) feeling worse.
During all of this, nurses were routinely taking my pulse. It was during one of these moments at the office of my internist that the nurse noticed an "irregularity" in my heart beat. Immediately I was put into an examination room and the eg-something-or-another machine was brought out and I was wired up to it. The needles fluttered. The result of this was an appointment with one of the cardiologists in town (again "cardiologist" sounds rather more "uptown" than "heart doctor").
It was through these visits to the cardiologist that I was discovered to have atrial fibrillation, a disorder wherein the upper two chambers of the heart go into a state where they both race and beat in an irregular way. Thus, the lower chamber of the heart is also affected and the heart does not pump sufficient blood at sufficient rates.
A-fib, as it is fondly called by those "in the know," is not in itself a fatal condition. It can, however, lead to heart attack and stroke if not treated. The side effects that I constantly have are fatigue to all out worn out, nausea, dizziness and "off balance," a general universal weakness, huffing and puffing when I do much of anything physical such as going up the stairs, and oft times difficulty in concentration.
The condition has been going on for so long and has become so progressively worse that I am now afraid that I have developed a bit of depression with it all...an " It is just not worth while getting up in the morning type of attitude..."
Yesterday I visited another heart specialist. He, I am told, is an "electrician" instead of a "plumber." During a forty-five minute visit (at $350.00), I was informed of several options now open to me. I decided to begin with the least dangerous, and if that does not work to move on to something more invasive.
I shall go into the hospital where on Monday and Tuesday I shall be given, twice a day, a drug called "Sotalol." I have not yet researched this drug. Thus, I can say nothing about it except that it is (1) supposed to help put my heart back into proper rhythm and (2) supposed to help the success of the Wednesday "procedure." Since there is some slight possibility of a stroke while taking this medication, I need to wear a monitor at all times. Hence, the hospital. Then, on Wednesday, I shall have a cardioversion. This is where my heart will be zapped electronically to see if that will set it back into proper rhythm. It is rather like rebooting your computer. The doctor says that he will know very soon if the procedure works. There is a one in 8,000 chance that there can be a stroke or death from the cardioversion. The board certified doctor here performs them regularly and has had no such instance. I felt comfortable with him, and even though I was not particularly nice, he was.
In the meanwhile, take care of yourself, and remember me in your prayers. If you do not hear from me by Wednesday afternoon, do not presume that I have gone to my Heavenly reward. I shall just be too "out of it" to write. Know that I take GREAT comfort in the old adage, "The good die young." I have years to go.
What Works and What Doesn't Frank's tale reveals both the promise and the limitations of the medical home. There are certainly many good things at work in Frank's experience. He has an internist who serves as his regular source of care and refers him to specialists (though perhaps not soon enough). He reports that his providers have been especially generous with their time in caring for him (an all too uncommon occurrence). He has excellent health insurance as the employee of a large, public university. He is well educated, which tends to translate into better use of the health care system and better health outcomes. In short, Frank has unparalleled access to the local health care system. He is well-insulated from most of the costs associated with his care, and as far as he can know, he is receiving high quality care. However, this scenario -- arguably the best that could be expected -- is far from perfect.
Difficult diagnoses are nothing new, but in Frank's case it is the patient who is ceaselessly pursuing the physician, complaining continually of fatigue for years, while the physician appears impervious to his concerns. To be fair, medical science had not yet identified central sleep apnea at the time of Frank's initial presentation, inherently limiting his internist from making a prompt diagnosis despite remaining current in his field. Frank's internist orders an unsuccessful string of "various tests in various machines," with little regard for what this might cost either the patient -- who fortunately is insured -- or the system as a whole. Rather, with each passing visit the complaint remains unresolved, while the physician continues to be compensated. There is no financial incentive for the provider to get it right. Indeed, Frank acknowledges that while he may not be getting the help he is seeking, he is nevertheless "helping the economy." Is it any wonder that we spend so much on health care in the United States and yet have such relatively poor health outcomes?
Then, too, are the indirect costs that arise from this uncoordinated system of care. As Frank's condition remains undiagnosed, he acknowledges the onset of depression. Like a car that fails to undergo regular maintenance will develop symptoms like lower gas mileage, the patient whose problem is unresolved is likely to develop comorbidities and sequelae that make their eventual diagnosis and treatment even more complex and costly. Why, when the diagnosis continued to escape the internist, did he not promptly refer Frank to the appropriate specialist (in this case a cardiologist) instead of taking a few years to do so?
Realizing the Vision Every current call for health reform includes some variation on the themes of increased care coordination and patient-centeredness. The precise details proposed tend to vary, but generally, increased efficiency in the form of reduced costs and improved quality and access is promised us if the system is made to work for patients rather than payers and providers. Whether or not such reform can lower costs, Frank's experience certainly shows that an unclear diagnosis is not helped along by the perverse incentives that exist in the system. Providers are compensated based on what they do rather than on how well they do it. It is both easier and more lucrative for a physician to refer a patient for a battery of sophisticated (and expensive) tests and scans using the latest technology than it is for that physician to take a detailed history during an office visit.
Furthermore, many physicians are still not practicing according to evidence-based guidelines. Medicine is not only a science, but also an art--one based largely on the physician's past experiences--with mixed results. Jerome Groopman's book How Doctors Think demonstrates that physicians respond to certain external cues, which often steer them away from making an accurate diagnosis. In Frank's case, fatigue and shortness of breath suggest the possibility of atrial fibrillation--the most prevalent heart arrhythmia especially in persons over age 60--despite the absence of other risk factors. Meanwhile, the patient is in no position to object to any of this. Most patients do not possess the medical knowledge to judge the appropriateness of their care, and are unlikely to complain about the use of cutting-edge technology--whether or not its use is warranted--because their health is on the line and their insurance has largely insulated them from the costs associated with any particular medical decision.
As Frank's story demonstrates, merely having a usual source of care is not enough. Patients, especially those with elusive diagnoses or complex ailments, face a daunting challenge in attempting to navigate the health care system, and stand to benefit enormously from improved care coordination. The medical home works best in the context of a medical neighborhood--a coordinated network of clinicians whose efforts are facilitated by the use of a universal electronic medical record system to produce better and more timely health outcomes. Absent such a system, tests, procedures, and medications can be wastefully duplicated and conditions can go undiagnosed.
Ultimately, the paradox is that while medical homes may be cost-effective at the system level, the incentives for the individual physician are often less compelling. Care coordination is not typically a reimbursable service under most insurance arrangements, and physicians are unlikely to increase their workload without compensation. Also, a primary care provider's adoption of the medical home model is limited by the willingness of other providers to participate as part of a patient care team. Ideally, all providers would need to be offered appropriately aligned incentives to ensure their participation. The greatest barrier is this: That the volume of services provided--rather than the outcome resulting from their provision--is directly associated with the physician's income. We must realize that more care is not necessarily synonymous with better care, and restructure payment incentives to produce the ends we seek.
The practice of medicine is limited by the finite resources of time, money, and knowledge, much of which--but not all--lies beyond the reach of a policy solution. As Frank's experience demonstrates, providing everyone with insurance coverage and a usual source of care is laudable, but only if everyone can be seen by a core team of clinicians who can provide them with continuity of care, who can coordinate services across multiple providers, and who are rewarded -- at least in part -- based on outcomes rather than inputs. If health reform legislation adheres to these principles, and provides mechanisms to enforce them, the vision of a health care system that prioritizes the needs of the patient will be realized. This might not achieve the hoped for cost savings, but each of us knows -- has been or will be -- a Frank at some point in our own lives. There is more at stake than the bottom line. We simply cannot afford to neglect the issue any longer.
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