The Price of Healthcare

My mom called me up in tears this morning.  We’ll get to the reason in a few moments- let’s first talk about her medical conditions.

My mom, Janet Schumacher, turned 65 this year. Following an episode of pancreatitis that damaged a good portion of her pancreas, she’s become an insulin-dependent diabetic.  This aggravated her psoriasis, a usually pretty benign skin disease, that causes all sorts of itchy, dry patches where it takes up residence.  But the worst part of it was not actually the skin stuff, even though she often had outbreaks that made her look like she had chicken pox- it was the development of psoriatic arthritis that was the most debilitating.

Psoriasis and Psoriatic Arthritis are auto-immune diseases.  Once the psoriatic arthritis set in, my Mom, who has for years been an active woman who has hung wallpaper, raced sports cars, gardened like a fiend, and basically has never met a challenge too big, was felled.  She could barely move in the morning, and began doses of anti-inflammatories and pain killers to let her move around.  Sometimes, the pain medication would make her sleepy, and this would also affect her blood sugar and her ability to respond to impending low blood sugar levels, leading to more than one incident where the ambulance came to help revive her once her blood sugar levels became too low for her to be responsive.  My mom was virtually crippled by the arthritis, and could barely walk, knit, or do much of anything for herself because of the constant pain.  She would call from time to time, crying, to the point where I began to cll her doctors, worrying that she was becoming severely depressed.

Working with her doctors, the rheumatologists tried her on Humira.  The Humira not only cleared up the skin condition, it’s been amazing at controlling the arthritis as well.  My mom is back to her old self again.  She is physically active, happy, and able to move yet again.

The price of Humira is a problem though.  Typical treatment can cost approximately $14,000 a year.  My mom managed to get coverage through her health care plan, but now medicaid wants to reduce the subsidy for Humira.  Instead of paying $50 a month, as she is now for the drug, my mom’s bill would increase to over $800, and that kind of increase is not something she can absorb out of pocket.

Mom is working part time currently, but she also cares for my sister who is disabled after a car accident left her with a traumatic brain injury and epilepsy.  There’s no additional income sources to enable her to afford this medicine, but without it, she will return, in a very short time, to becoming disabled herself.  Her call and tears today were from the fear that she could become disabled again if she can’t get coverage for this drug.

I’m married to a physician, and I feel like I do have a sideline seat for the health care crisis.  I see the physician view, and that of the patient.  I see my Mom, who has benefitted tremendously- this drug has given her life and livelihood back to her, and without it, she may very well end up on welfare or other public support, as she will no longer be able to take care of herself or my sister, for that matter.

I know we are going to have to make hard choices in this health care debate.  But somewhere in the parameters of the third party payor system, we have to find a way to cover medication that is life changing, that helps people preserve their independence, helps them remain useful and productive, and not make them dependent solely based on the cost of the drug alone.

My Mom is scared,  She’s scared because she remembers the pain.  She remembers feeling crippled.  And she doesn’t want to go back to be that person again.  As her daughter, I dread seeing that possibly happen to her, over something that is a bureaucratic decision that shifts more drug costs on her, but at such a rate, over such a short period of time, she has no hope of compensating.

And while this may seem benign and reasonable from some accountant’s desk  somewhere, out here, in the real world, that decision may very well cost my mother all of her mobility, her functionality, and her ability to live independently with my sister.  Without this drug, they both may become more dependent on the State, just at a time when the State can barely support the people they have on the rolls.  I am not sure this is really cost savings, it’s a very cruel way of cost-shifting at best.

My mom is one of the million examples of why we need health care reform, and we need a way to make this system work, with humans making human judgments about what’s best for everyone, not just accountants.  Because everyone, including my family, will be best served by their continued independence, not by making my mom and sister dependents on the State due to the withholding of one medication.

Tags: health care, humira, Obama, psoriasis

Electronic Medical Records and Impatient Patients

I read a blog post by Andy Kessler today, who has written a book called The End of Medicine, which I have admittedly not read as of yet. The post alleges that the medical industry has created a complete boondoggle of finances, and if we were to employ electronic medical records and their efficiencies, physicians would suffer and therefore, the emphasis and resistance to EMR is merely doctors protecting their own. (Or that’s how I read it.) While the Oliver Stone conspiracy theory plays well to an audience who has increasingly less and less trust in authority, it’s not even close to the facts of the matter. Let’s start out with a few basic facts:

- While many medical technologies like ultrasounds are slowly being digitized, there is no standard language or interface that makes this information easily accessible in a secure form. For example, an ultrasound machine does not automatically save all images onto a SD card and you can’t upload the images easily to Flickr. Add to this that small distortions can be indicative of disease and change a diagnosis, and you have a problem- not only that of having to retool and replace thousands of very expensive diagnostic equipment in every medical practice and hospital across the country, but how do we ensure that these images maintain fidelity when they are transferred between a doctor, a hospital, or over the net? Let’s not even alk about the fact that different EMR’s on the market do not as of yet interface smoothly with one another, let alone the labs- there are not, as of yet, any web-like standards for medical EHR.

-Part of the problem caused by EMR is that the data needs to be measured the same between doctors and institutions. The quality of the data- not just your hemoglobin, but measurements of say, fundal height, are not nearly as standard as one may assume. Data fidelity is as much an issue as is accuracy. Without more investment in standardization of data collection, sharing data between providers and institutions causes more problems than it solves.

-Paper records are sometimes better at flagging problems and inconsistencies than EMR. Some physicians I know were recently discussing a case where the blood tests of a woman showed conflicting Rh factors between what was in her office chart and what was in the hospital’s chart, which was an EMR. It was a problem tracked down to an error in the lab- but the problem was almost overlooked because there’s no way to put a big yellow post-it note, yet, on most EMR’s to make sure, without a doubt, the physician notes this sort of minor, but critical discrepancy. We need to make sure EMR’s are not just a sea of numbers, but that there’s some reasonable attention-getting mechanism so inconsistencies are readily apparent.

-Kessler talks about the problems that could be solved if all the data were gathered in one place. This is very true. But between HIPPA laws to protect patient privacy and the use iof their data in any sort of medical research, and the thorny issue of who would own, maintain, and allow access to this data, let alone pay for its creation, this is not an easy problem to tackle. A physician I know well just went to ask for some of the stimulus money to help start a data storehouse to solve some of these problems in respect to pregnant women. If the NIH and government own the data, there may be more equal access to it, than say, if a private healthcare company or drug company owns it, and creates an access and monopoly issue- can they cut off access to their competitors? How much money would a project need to buy access to the data? Who pays for the accumulation and submission of the data? How does it get stored? How are redundancies built in so the data is backed up and resilient from both unauthorized access and failure in the event of an emergency?  How do you make sure smaller, poorer hospitals have enough data infrastructure to interface with larger, referral centers, especially in times of emergency?

Healthcare is fragmented more so than our financial services and banking ever have been.  Individual practitioners are like individual small businesses- asking them to create and adopt an EMR for all their patients is like trying to make sure that Target and Kmart communicate to one another regarding your buying preferences, and then provide that data to your favorite pizza joint and dentist.  We’d like our cardiologist and internist to have the same system, but if they do not have hospital based practices, this is highly unlikely at this point in time.

I appreciate the frustration that Mr. Kessler and others feel with the slow transition from paper to pixels in medicine, but the issues are WAY more complicated and nuanced than he lets on.  This is not a conspiracy like the JFK assassination, nor is it a plot for doctors to secure their position as high earners. Most docs I know and I am married to one, would love for the data to be easier to centralize and maintain.  But look at how data fidelity errors could cost people their lives- small errors propagating poor decisions in a diagnostic tree- and look at how fast incorrect data can spread- like the rumors of celebrity death on Twitter- and ask yourself if you want fast, or you want accurate when it comes to your health care.

Ask why doctors make a decent salary- could it be 8 years of advanced education, plus residencies of an additional four or more years, plus the responsibility for the health, well being and very lives of their patients- and ask yourself if you would take on that responsibility for minimum wage.  Not me.  We want doctors to still be magic, yet be as concerned with customer care and treat us like family, yet we want them to do it as cheaply as possible.

My secret concern is that our third party payor system insulates most money issues from coming between a doctor and patient- a doctor can assume he will be paid for his work without running a credit check on you first like other businesses.  But then again, the office, insurance and the hospital are in charge of the billing and negotiating payment, and he may sincerely not know if the meds he is prescribing or the sutures he is using are more expensive than alternative options- they use what is the standard of care, or what the hospital stocks in the OR.  A doctor himself may have very little idea what his patient pays, and while that makes for inefficiencies and possible overuse of more expensive treatments, we have traditionally taken on these costs to prevent ability to pay from determining which tests a doctor may use, and somehow using less sophisticated and cheaper tools for patients of one economic class over another.  Money is important, to be sure, but we all want chemo when we need it, regardless of our ability to pay out of pocket. We already know people forgo treatment of illness and injury if they can’t pay for it, often making their condition worse and more catastrophic.

I don’t think we really want doctors spending all their time constructing a consumer reports of medical equipment, looking for the cheapest stuff available- we want them to use reliable equipment at a reasonable cost, to do their jobs well.  If we add the burden onto docs to be full time cost containment vehicles, what will we be losing as a result?

The health care problems in this Country are thorny at all levels.  I just think all of those who think the answers are as easy as putting your med records into a word file or in the cloud don’t know enough about medicine to appreciate some of the more difficult issues out there.  It’s only by having doctors and geeks in the same room that we’ll be able to solve these problems globally.  That, and making sure we have some data standardization that all ancillary medical equipment businesses would be willing to adopt, so the infrastructure works well.  Until then, we have a mess of puzzle pieces that don’t easily fit together.

Tags: andy kessler, decisions, economic pressure, electronic medical records, EMR, health care, health insurance, healthcare IT, medicine, third party payor

Health Care, Under Cover

Disclosure- I am married to a physician who is in an academic medicine practice.

I sit on the nexus between two worlds- that of the normal, every day patient, and that of someone who practices medicine every day. It’s often an odd place to be, especially in these days of debate over health care reform. It’s so very clear that medicine has to start keeping up better with the changing ways of communication. Yet, it is hamstrung by a world where health information can be used as leverage against someone for their employment, where disclosure of information and security are at a premium, and where litigation and taking things out of context abound.

A friend of ours said to me the other day that the best piece of advice they ever got was that “You have to be treating patients, not practicing medicine.”  In a nutshell, that means patient-centered care should always be the rule, and the institution of medicine needs to make sure the rules, regulations, procedures, and even science do not lose sight of what’s most important here- making people well, or keeping them from getting sick in the first place.

That said, the markers doctors use to judge the quality of care and those used by patients could not be more different.

As in any business, the people inside the field know who they can trust. If a doctor needs to see one himself, they ask other doctors for their advice if they don’t know someone in that specialty themselves, or ask their nursing staff what they think of the doctor in question. Just like a secretary knowing more about her boss than any customer ever will, the same goes for nurses and doctors.

Doctors, especially in academic medical centers, know how current and up to date the practitioners are in the area. (Or better yet, ask a nurse, since they work more closely with a doctor than most other doctors do.)

They know who is Board Certified in their sub specialty, and who is not, as well as those who had trouble passing their Boards. (This means the Doctor passed some lengthy exams requiring them to pass a written exam as well as an oral exam before a group of doctors, examining the patient cases they treated during training, questioning what decisions they made and why, good and bad.)

While there are plenty of caring physicians who haven’t been able to pass their Boards, many of the more prestigious hospitals don’t allow those doctors to practice there because they aren’t certified. If you are in a rural area, or have a small community hospital, there’s a pretty good chance not every doctor practicing there will be Board Certified in their sub specialty, in contrast to hsopitals in larger, more competitive markets.

As the wife of a physician, I know the back room gossip of who’s good, who’s okay and who is starting to lose some of their sharpest surgical skills. It may not be something we talk about in public, but everyone knows who is not always on their “A” Game at work, and medicine is no different from any other job in that respect. I know I’d rather be treated by someone who has a good combination of clinical skills, surgical skills when needed and who is doing some research or otherwise engaged in teaching or the latest treatments.

We certainly have a bias towards academic research hospitals for that reason. Even when you might be seen by a resident, the chances are you are getting better and more consistent care than in some of the other practices around. This means I often sit next to medicare patients while waiting in the office, since these doctors treat anyone regardless of their insurance status. Being in the office of a doctor who treats the wealthiest and most prestigious people in the community is far less important to me than being treated by the doctor who knows the most.

I worry that being a lawyer and a doctor’s wife gives me a very skewed picture of what quality of care looks like. I know when I show up at the office or even in the Emergency Room with a kid with a broken arm, we get some favors, some “professional courtesy”, like not having to wait as long before being seen.  (It’s one of the few perks that helps compensate for the huge number of hours each week my husband spends at the hospital and on call.)

But at the heart of it, quality of care to physicians is based first and foremost on the science, who is best trained and who keeps up with the latest advances.  From a patient’s perspective, we often don’t have the all the knowledge necessary to make the best health care decisions.  We don’t ask if our doctors are board-certified.  We don’t know if they are practicing rountinely within the standard of care.  Most likely we’ve chosen them because they take our insurance, they aren’t too far from home or work, or we like them personally.  We judge a lot of the quality of health care by how we are treated emotionally- Do I like the receptionist and the nurses?  Is the lobby and waiting area nice?

None of that has anything to do, however, with the quality of our care, but it has everything to do with our perception of being cared for.

One of the things we’re going to have to sort out in health care reform is how much of the reform needs to be based on allowing doctors more time to really see their patients and get to know them- one on one care that takes time, and is not an assembly line.  If we want an efficient system, the first thing that gets factored out is the more personal attention- just like “making schools more efficient” has meant factoring out smaller classrooms and things like art for the sake of cramming as much knowledge as possible into the heads of outr kids in each school day.

But in both cases, the efficiency has detracted from the perception of quality, andwe have factored out the “quality of life” factor which is so essential both to great education and great healtcare.  These are not services that can be effectively mechanized like an assembly line- the human touch does really matter, and we have to accept that quality and efficiency are not always going to be 100% compatible metrics where humans are concerned.

Tags: health care, medicine