In his new book, Health Care Reform Now!, Kaiser Permanente President George Halverson points out that when you look at the 10 percent of patients running up 70 percent of the U.S. health care bill, you find that most are suffering from one of five chronic diseases: diabetes, congestive heart failure, coronary artery disease, asthma and depression.
These diseases can be expensive because if they are not monitored properly, they can quickly lead to avoidable hospitalizations—and, in the case of diabetes, avoidable amputations. One of the most pressing questions health care reformers face today is this: How can we better manage these very expensive diseases—and how can the patient participate in self-management?
Recently, Maggie handed me a Bulletin on Aging and Health from the National Bureau of Economic Research, which includes a synopsis of a paper (penned by James P. Smith of the RAND Corporation) which focuses on one of these chronic diseases—diabetes. Smith’s goal is to explore the relationship among diabetes, socioeconomic status, and the patient’s ability to self-manage treatment.
Of particular interest is Smith’s emphasis on education—which, he concludes, is a major factor in determining first, whether a patient is likely to suffer from diabetes, and secondly whether he or she can successfully self-manage. It’s this second point that I want to address, in part because it provides a good example of how a consumer-based approach to medicine distorts the complexities of health care.
Smith proposes that “education may increase patients’ ability to adopt
and adhere to complex new diabetes treatments. These treatments often
require careful patient self-management on a daily basis – for example,
patients must monitor their blood glucose levels, balance insulin
injection doses with food intake and physical activity, and consult
regularly with health care providers.”
In other words, self-management is a complicated business, and education
helps “train people in decision-making, problem solving, and adaptive
skills, forward looking behavior, all of which have pretty direct
applications to a healthier life.” The better educated you are, the
more you can think on your toes and look to the future.
Smith’s findings reinforce the importance of thinking about patients as
individuals—complete with their own aptitudes, experiences, and
histories—rather than as monolithic “consumers.” Economists who believe
in market solutions tend to believe that all men are rational and have the same capacity to act in their own best interest. But there is little in the consumer-driven paradigm that
accounts for educational disparities among patients (we’re not talking
about education about diabetes, but general schooling).
Moreover, it’s not just education, but also the self-confidence that
comes with education, that’s a big factor in predicting the success of
self-management according to a 2006 study published in Diabetes Care.
Consider the diabetes empowerment scale, which asks patients to record
how confident they are that they can acquire the skills needed to
manage the diseases: For example: Do they feel that they have the
wherewithal “to turn [their] diabetes goals into a workable plan”?
Importantly, many of the questions on the survey have little to do with
diabetes. Among other questions, patients are asked whether they “know
the things about [themselves] that either help or prevent [them] from
reaching [their] diabetes goal” and if they think that they “can come
up with good ideas” to help reach their goals. Success in
self-management is determined not only by the abilities of patients,
but also by their confidence in those abilities.
Advocates of consumer-driven, market-based health care insist that
patients are just like any other consumer, and that when given adequate
autonomy from the paternalistic health care establishment, they are
capable of making logical, self-interested decisions. But
self-management of diabetes is more difficult than shopping for a car.
It requires a well-informed and responsible patient who believes that
he is capable of monitoring his disease. Such patients need doctors
who, in the words of a 2004 Public Health Reports article become
“professional advisers and partners in the design and conduct of
medical management [and] become teachers in developing the patient’s
management skills.”
But not all consumers are able to avail themselves of the counsel their
doctor offers. Smith’s findings show that if we were to give two
patients the exact same access to care and advice, the better-educated
patient would be more successful because he or she could better adapt
to the ongoing challenges of self-management. In health care, customer
satisfaction is tied to the abilities of the patient, not to some
universal rationality found in all consumers to “act in their own best
interest.”
Moreover, there are psychosocial dimensions to health care that market
logic just doesn’t capture. Even if we were to somehow equalize
education levels across patients, there would still be disparities in
the quality of self-management outcomes. These disparities would hinge
not on information or knowledge, but on emotions linked to
self-confidence and self-perception that have little to do with
rationality.
In contrast to other markets, where my smarts or feelings have little
bearing on the final product (my car gets the same mileage whether I
have low self-esteem or not), in health care I am part of the final
product. Thus the patient’s cognitive and emotional circumstances play
a big role in determining outcomes. This holds true even when patients
are given the knowledge and opportunity to take control of their care.
The “rational consumer” model fails to take this critical point into
account.
Today, some tout “personal responsibility” on the part of knowledgeable
consumers as being the key to better health care. But when the
consumer is part of the product, responsibility isn’t some independent
value hidden away in an impregnable safe-space of rationality—it’s
inextricably tied up with the patient as a whole: his experiences, his
feelings, and yes, his education.
So long as educational disparities persist, painting patients with the broad brushstrokes of market logic is counter-productive because in reality we don’t all have the same capacity to be effective in efforts to manage our own care.
Onr of the problems with “management” and “early detection” under the current health insurance mess is that people are afraid to be diagnosed with anything lest they be “uninsurable” in the future.
A couple of years ago I had a 104 reading on my fasting glucose test, and the lab wanted to perform an A1C test for “pre-diabetes.” I refused to do it because I didn’t want to be diagnosed with anything that would make me harder to insure if I lost my group insurance at work. Instead I concentrated on losing weight, eating better and exercising more, and I feel considerably better.
Had I not had to worry about the health insurance situation, I would have taken that test and (most likely) given similar “first step” instructions to what I implemented on my own. But I’d also have been much more willing to confirm it.
The current health insurance system punishes being diagnosed with just about anything. It can be a strong disincentive to regular checkups and catching problems early while they are manageable.
I wonder to what extent sub-optimal management of the five listed chronic diseases has nothing to do with access to insurance, ability to afford drug copays, and not fully understanding what needs to be done with respect to weight control, diet and exercise. In other words, how significant an issue is non-compliance? Plenty of people stop taking blood pressure and statin drugs or at least don’t take them consistently because they start to feel better. They don’t get enough exercise or eat enough healthy food or eat too much unhealthy food, not because they are uneducated but because they simply lack the self-discipline to do what they need to do to manage their disease as well as it can be managed. It must be enormously frustrating for doctors when patients simply don’t follow their advice. Even gold plated, first dollar insurance coverage can’t guarantee compliance with medical advice. I don’t think one needs a college degree to understand what needs to be done to manage these diseases. At the end of the day, personal responsibility is an important part of the equation.
Great point Tim, I think it also supports Niko’s point that there are so many more factors that drive the decision making process for health care consumers such that standard economics do not apply. As far as the frustration Barry implies, non compliance was only frustrating to me when I felt the patient didn’t understand (read shared decision making). If you understand the likely outcome of what you are doing and choose to do it anyway I have done my job, I have supplied you with all the information you needed to make an informed decision. It was the cases when I knew it would take a great deal more eduction/discussion (thus time which isn’t paid for) that caused me to lose sleep at night, I knew they may be causing themselves irrperable harm and felt as though I failed them as an educator.
Tim – The issue you cite with respect to the Hemoglobin AlC test would not be a concern under community rating, guaranteed issue, and mandatory participation. The downside, of course, is that young, healthy people would pay much more for health insurance (even with a reasonable percentage of income cap) that they currently do if they can pass the insurer’s underwriting screen. In other words, there’s no free lunch.
Barry,
I think that personal responsibility is important as well–I’m not trying to say that the patient who ignores his doctor’s advice is guilt-free.
Rather, the problem lies in thinking that personal responsibility is the principle on which you can hinge health reform. Effective health care isn’t just a question of information, but of education, intellectual flexibility, and self-confidence (especially in this case).
Labeling any and all complications (or, in market speak, “inefficiencies) derived from the patient as “irresponsible” blurs this fact, because it’s based on the market view of a perfectly rational individual who takes information, processes it, and spits out a plan of “most efficient self-interest.”
In some cases,poor self management probably is due to non-compliance. But the process is also ongoing, and often challenging. Just as important as discipline is the ability and confidence to rise to the new challenges regularly offered by self-management.
Are people less able to solve new problems as they arise irresponsible? Are those who lack self-confidence?
Self-discipline is important, but I’m wary of using it as a “catch-all” for any treatment complications that might arise. This is what I think the consumer model tries to do for the sake of simplicity, and that’s profoundly unhelpful.
Barry, you are correct in that there is no “free lunch.” Fortunately what I got from my lab results were not alarming but just enough to be the “shot across the bow” which kicks my butt into gear in terms of policing my lifestyle.
Most likely, had the A1C confirmed some sort of “prediabetes” (which I thought was considered 110-125, not 104), the “treatment” — at first — most likely would have been to change lifestyle for a few months and see if that helps manage (or even partially reverse) the condition, and only if that failed would medications likely be indicated.
The problem is that this would be a condition that’s likely well-manageable with appropriate lifestyle changes, but insurers would look at it and see huge potential expenses for someone who “fell off the wagon,” developed full-blown diabetes, and allowed things to get worse to the point that major expenses kicked in. I understand that — but I also see enough people having trouble getting insured (or being quoted exorbitant rates) that there really is a strong disincentive to “partner” with your health care professionals and manage a condition in a way that appears on your medical records that insurers could see in all its glory.
The last screening I had a few months ago turned out to be a fair bit better than the first one I mentioned. So apparently the lifestyle changes are working, and I don’t have a big “strike” in my medical history. I would have preferred to follow up with my doctor initially to confirm what I was doing, but that could have been hazardous to my future insurability. Sad.
Niko,
I think I understand what you are saying, and I don’t think we are all that far apart.
Here is my concern. Suppose, for the sake of argument, that a large segment of the population in the upper half of the income distribution and with above average education would prefer a high deductible health insurance plan in exchange for a lower premium. Suppose, they, as a group, understand the importance of preventive care and timely intervention when they sense that something is wrong. They will not forgo necessary care because they have to pay out of pocket until they reach the deductible.
There may well be a second group of people with less income and less education who may also opt for a high deductible plan to get the lower premium but then forgo preventive and other necessary and appropriate care because they have to pay out of pocket until the deductible is reached. They may do themselves harm and then incur higher medical costs if they wait until they are sicker before they seek care.
The question becomes: should we try to protect one segment of the population from making bad healthcare decisions by not allowing high deductible plans as an option even though there may be a significant segment of the population that wants the high deductible plan to be available as a choice and will likely use it properly if they select it?
If the objective is to optimize the efficiency of resource allocation and the affordability of healthcare for the society overall, I think allowing high deductible plans as a choice is the way to go. If the goal is to protect lower income and less educated people from making bad decisions even if it raises overall healthcare costs and results in less efficient resource allocation, then choice may not be such a good idea. My bias and my preference is for choice, combined with targeted efforts to arm patients suffering from chronic conditions with the education they need to properly manage their disease.
Barry, I dont think allowing high deductible plans is actually going to, “optimize the efficiency of resource allocation and the affordability of healthcare for the society overall” because what happens in this case is the patient who puts off being seen shows up when they “can’t take it anymore” at which time thier care and need rise significantly. That being said, if they cant afford what now becomes a very expensive medical interation we all pay for it in higher premiums. Case in point (this is just one case of many, many I have seen), diabetic woman without significant resources did not come to the doctors with the sore on her foot because she couldnt afford to, because she had lost sensation due to diabetes this progressed quite far before she finally came in. At the time she reported the the ER, she had a mummified right lower leg, required a prolonged hospital stay and amputation, now she is on disability and medicare because she can’t work. Not sure the financial barrier to care helped anyone here. This is not an isolated incident, talk to any er doc about these kinds of cases. Lack of access to care actually increases cost (no matter what the cause).
Niko,
I agree that education levels can play a big part in a person’s ability to self-manage a chronic illness. Often, the chronicaly ill are also suffering from depression, which can seriously affect motivation levels. I think we will see more employers and health plans bring health and wellness coaches on board to reach out telephonically and virtually to these individuals. The questions in the diabetes questionnaire are not unlike those that coaches use. We’re seeing more evidence that wellness programs will achieve stronger success when they’re motivating and modifying participant behavior in the context of a trusting relationship (that “relationship” being the coaching relationship). This trend is so new that I doubt there is data on the impact of a client’s education level on coaching success. We will have to pursue that in future health coaching initiatives. Thanks for a thoughtful post.
Niko’s points about education level, chronic disease prevalence, and the importance of education for both disease prevention and management are well taken, but there’s another reason to believe that consumer-driven health care and high-deductible insurance plans aren’t going to make a major dent in our health care costs: most of those costs are incurred during hospitalizations.
Yes, many hospitalizations of the chronically ill are preventable with proper disease management. But the reaity is most of us are going to die from one or more chronic diseases, and as we grow sicker and sicker, many of us are going to be hospitalizated more and more, no matter how well we or our doctors manage our condition.
For consumer-driven health plans to have any significant impact on costs, they would have to reduce utilization that occurs during hospitalizations. When you think about what that really means, it seems kind of silly. If you’re sick enough to be in the hospital, you’re in no condition to be making cost-conscious decisions about your care. There you are, lying on your bed, with tubes and fingers stuck in every orifice, and you say, “Excuse me doctor, but how much is that MRI going to run me? Do I really have to have anaesthesia for surgery? It’s so expensive!” Nor are you in any position to be more or less compliant your doctors’ orders for managing your disease on the basis of cost.
By all means, we should make patients more aware of the costs of the care they need as a result of their inattention to their own health. They most certainly should know that health care isn’t free, even when their employer pays the bulk of their insurance premiums. That money doesn’t come out of stockholders’ pockets, and it certainly doesn’t come out of the CEO’s salary. It is paid for via lower wages. If more Americans understood that, maybe they’d be more willing to make better lifestyle choices, but I doubt it — for precisely the reasons that Niko outlined. Maybe they’d be less eager to demand unnecessary care and prescriptions for brandname drugs. But all the self-care in the world is not going to make a significant difference in the cost of hospitalizations for the seriously ill, because it is doctors for the most part who dictate what happens in the hospital, not patients.
Shannon Brownlee, author of Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer
I think that the idea of ‘personal responsibility’ grossly underestimates the factors completely outside the control of any individual. One of the biggest being GPs trying to override specialist’s orders. I know, I have had it happen to me several times over the years.
There is also the issue of the fact that most things that give a person a propensity towards any given disease are completely outside that person’s control – genetics, among them.
Most people have very little control over their work environment and hours. This can lead to situations where it is simply impossible for them to engage in a healthy lifestyle. Due to long hours or hazardous environments they are under tremendous stress. Make no mistake, these are very real issues in the lower socioeconomic rungs of our society. If you have to work 2 to 3 jobs to put food on the table, you aren’t going to be taking a whole lot of time on your own healthcare – and will probably not be going to the doctor until an emergency room visit is necessary. (ER doctors are NOT primary care doctors in the same way a GP is, no matter how many think they are.)
I do know that despite taking the time to keep my Medic Alert information up-to-date, more than once I have had ERs act as if they had never seen a medallion before. I took ‘personal responsibility,’ but that made no difference since the staff looked blankly at me when I showed them the medallion. I was not exactly in shape for an entrance interview. Luckily, I am a woman who has experienced endometriosis pain and still had to function, so I may be about to pass out, but I can still converse.
Even keeping your medical records on hand makes little difference if you have anything atypical in your “common” chronic disease. And by atypical, I mean that you have to read past the first sentence in the PDR to recognize that that is a COMMON presentation of said disease. I have actually had ER doctors tell me something was not a symptom of my disease when it is confirmed by both the area specialist and outside specialists – and a senior GP.
Perhaps, instead of pointing at patients for not being compliant, a look at the inefficiencies within the medical community would be more prudent.
Pax,
MLO
Shannon,
Great point. The consumerist assumption that consumers are perennially in the driver’s seat totally looks over the fact that, for the most serious and costly diseases,the big price tag is in the hospital. Part of this is due to limited access to health care, which makes prevention less common, and thus costly hospitalization more so.
But part of it is also just the reality of sickness. There will come a point where the patient wants to (a) do everything he or she can and/or (b) turn themselves over to the care of professionals…both of which are completely understandable, and won’t be eliminated by consumer education before the fact.
You can “educate” consumers all they want so as to make choices when they are healthy and have the distance to be rational–that’s the easy part! What’s hard is to institute reforms that don’t completely overlook the fact that many of the most important–and ultimately most costly–health care decisions are made during times of emotional duress. Can consumer “demand” really be a guiding light in scenarios like this?
Patricia, thanks to you too for the comment detailing a bit how we can’t separate medical outcomes from the “irrational” aspects of patients.
Niko
The Pumpers: A New Paradigm in Diabetes Management
With some diabetic patients, insulin is necessary for their survival. As I recall, a man named Pauescu developed the concept of insulin replacement, and discovered the method of using insulin secreted from pigs as a replacement method for humans. Legend has it that this concept originated in a dream this man had on night several decades ago. Yet presently, this hormone which is naturally produced by the pancreas normally has advanced as far as treatment goes for the diabetic patient who is dependent on insulin for their treatment, and those are type 1 diabetic patients.
Recently, the Denver Bronco’s quarterback, Jay Cutler, was recently diagnosed with diabetes, a disease that affects over 20 million people. As I recall, part of his treatment regimen involves what is called an insulin pump. They are the size of a cell phone, approximately, and the users of such pumps are called, in the diabetic community, ‘pumpers’. Developed primarily for type 1, or insulin-dependent diabetic patients, the pumps can be used by some type 2 diabetic patients if they have some dependence on insulin replacement. The importance of the device is improved management of the disease, which can cause life-threatening consequences if the disease of diabetes is not controlled properly.
The three elements of an insulin pump include the pump itself and its components, such as the insulin tube for delivery of insulin, and a catheter that delivers basal and bolus doses, which are dependent on preset calculations. The amount of insulin is fast or rapid acting to ensure maximal pharmacokinetics to create intensive insulinotherapy for required diabetes management. These insulin amounts are ultimately determined by the patient’s doctor, who is usually an Endocrinologist, including bolus doses determined by the patients glucose level calculated with their carbohydrate intake, also known as the meal- time dose. Furthermore, the amount of insulin delivered by these methods is quite small due to the nature of the medication being rapid acting.
The makers of such pumps tend to partner with associations relevant to the disease of diabetes, as well as local chapters of such organizations as the ADA and Endocrinology societies that may exist, along with contacting diabetes educators frequently at different locations throughout the country. Unfortunately, there are few Endocrinologists in the United States, as it is not one of the more lucrative specialties of a doctor, so treatment of diabetes is dependent on many others who are not doctors, but patient care specialists regarding this disease.
Competing companies are few, as there are approximately 5 insulin pumps in the market, with Medtronic having the largest share of 30 percent, as I understand. Some pumps avoid the possibility of metabolic action therapy due to their dosing precision, in addition, there is at least one pump that has long acting lithium battery that averages about a 6 week lifespan, yet a pump user should have a battery replacement with them at all times. The personalized insulin and carbohydrate ratio provided by insulin pumps greatly reduces any incidence of such complications as hypoglycemia. Also, in addition to storing and recording glucose and carbohydrate values with a back up mechanisms, some insulin pumps have a low basal rate, which I understand is an advantage as well. Regardless, and in my opinion, the ultimate advantages of insulin pumps exist with all that are available to patients presently.
The cartridges of the insulin pumps hold a large number of units of insulin, which is an additional benefit. Further benefits include the fact that the pumps are convenient and reliable- especially if damage is avoided to the pump. Most importantly, the personal service provided to the patients by the caregivers of existing diabetic teams in health care facilities from hospitals to health care centers dedicated to the disease of diabetes ensures proper management of their disease, much to the benefit of those who have diabetes.
The market growth of insulin pumps is anticipated at over 10 percent a year, as only 20 percent of type 1 diabetic patients have utilized these pumps out of over a million type 1 diabetics in the United States. The market is speculated to be greater than one billion dollars and is expected to increase due to speculated growth of the Insulin pump market. Many believe this therapy is superior in comparison with previous treatment options available to diabetic patients, along with being less cumbersome for these patients. Because of this, there is decreased mortality along with increased quality of life for diabetics, as they are assured of better control of their disease in this rather convenient way. This has been proven by better A1C blood tests and glycemic control of diabetic patients.
The steady dosing maintains the patient’s metabolic requirements and decreases long term consequences associated with diabetics. It has also been proven that insulin pumps result in fewer hospitalizations, ER visits, and episodes of hypoglycemia due to the excellent control provided by the insulin pumps while providing the necessary intensive therapy for their disease state. The fast acting insulin used in these pumps is created through genetic engineering, I believe. In addition, patients are encouraged to check their blood sugar greater than three times a day while on the insulin pump. So this system is both friendly to the user and is clearly a very convenient form of treatment for them. The A1C test, by the way, is a blood test that reflects the diabetic patient’s average blood sugar over a period of a few months.
Those who may be interested in insulin pumps will include those described already, along with hospitals, long term care facilities, home health care agencies, pediatricians, and possibly dialysis clinics, to name a few. Most likely, those considered for insulin pumps will be diabetic patients that are unable to achieve compliance with their current treatment regimen, along with other benefits of insulin pumps stated so far.
The diabetes team for a diabetic patient may include an Endocrinologist, a diabetes educator, a dietician, along with the insulin pump representative. Follow ups with this team may include review the progress of the insulin pump for the patient and how the patient is tolerating the treatment. Often, classes can be scheduled through an institution or center regarding insulin pump training a few times a month. Education and training about the insulin pump may include the following:
1. Glycemic control importance and how to prevent and treat as needed
2. Basal and bolus concepts and how they contribute to the treatment
3. Pump basics and strategies. Negative effects stressed to pt. if their pump is not used properly.
4. Importance of knowing blood sugar and why. Definitions of terms like A1C
5. How to deliver a bolus dose after checking carbohydrate intake
6. How to check the pump’s memory
7. Troubleshooting, phone number access, and how to replace battery
8. Emphasize the safety of the insulin pump if operated correctly
9. Keeping a glucagon injection and spare battery with you
Ultimately after training others, it is important that the patient acknowledges understanding of how the device works, as well as the consequences that may occur if directions are not followed that are ultimately determined by the patients doctor. And fortunately, doctors and others who treat diabetes now have a new tool or device to assure compliance and longevity of these patients.
Innovation is a wonderful thing, such as what has been described. Control of such a large and devastating disease is of great importance, so there seems to be a much desired need for pumpers now and likely in the future.
Dan Abshear
I think that “personal responsibility” is the key to a better health care service. If he is well educated about what his body needs, he should make it a point to do it. We all should take responsibility to whatever is happening to our bodies.