All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21.

After reading through Joe’s post and the stories to which his post links, I’d like to add the following two very basic observations (which I will only state here – further elaboration shall have to await another time):

  • OBSERVATION #1: Thankfulness and disability are entirely compatible – indeed, one can be genuinely thankful for one’s disability. “Thank you Down’s syndrome!” Kathleen says enthusiastically, in her prepared remarks for the UN event.[2] It’s hard to imagine she doesn’t mean this sincerely.
  • OBSERVATION #2: As Hans S. Reinders has said repeatedly,[3] often the thing that people with profound intellectual disabilities need most is simply to be chosen as friends. This point is easily generalizable to persons with any kind of disability—very often, what we “need” most is simply friendship, not “healing” or “relief” or “freedom” from the (supposed) “burden” of disability itself.

With continued developments in prenatal genetic testing techniques, including the relatively recent advent of non-invasive prenatal testing (NIPT), it has become even easier to detect, at earlier and earlier points in pregnancy, the presence of disabilities such as Down syndrome. And this, of course, opens the door to so-called “selective termination” of unborn children who test “positive” for such conditions.

For Denise Humberstone, Kathleen’s mom, this makes no sense whatsoever. Why shouldn’t we accept all persons, Denise wonders, including those with Down syndrome and other disabling conditions, with the same kind of unconditional love that we would offer to any other, nondisabled person?

“Whatever happened to unconditional love?” she asks. “When did society decide we should want and love a child only if it is as perfect as medical research allows?”

In a Facebook post[4] written just prior to Kathleen’s speech at the UN event, Denise addresses the “unrealistic demands for perfection” that appear to drive so many of these decisions to abort unborn children diagnosed with Down syndrome and other disabilities:

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time….

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs…. There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt… and rise up to the challenges that life throws at us?

Around the same time as Joe posted his blog entry about Kathleen Humberstone, quadriplegic and disability advocate Joni Eareckson Tada posted a blog entry[5] about World Down Syndrome Day. Here’s what she wrote:

I love smiling children… the image imparts such hope and joy, reminding us we are all made in the image of God. I especially delight in the smile of a child with Down syndrome. Anyone who has rubbed shoulders with someone who has Down syndrome will rave about the love, openness, and zest for life they bring to every family. Their laughter and joy is infectious. Today, as we celebrate World Down Syndrome Day, I’m reminded of a touching video I saw two years ago – titled “Dear Future Mom,” it shows children and teens with Down syndrome. Each has something brief and sweet to say about their disability. Then, they look into the camera and address the worries of any pregnant woman who is fearful about carrying a child with Down syndrome.

This video blessed me so much, I just had to share it with you. Perhaps you know of an expectant mother who has learned her baby has a genetic disorder. Please share this with her – the smiles on the faces of these young people will ease fears and give hope, helping her welcome her precious baby into the world.[6]

In the end, Kathleen Humberstone and the children and teens featured in “Dear Future Mom” remind us of what we all need the most: unconditional love.

 

[1] See http://blogs.tiu.edu/bioethics/2017/03/24/a-disabled-person-speaks-out-against-a-particular-form-of-discrimination/.

[2] http://www.bbc.co.uk/newsbeat/article/39339338/downs-syndrome-teenager-addresses-the-un-in-geneva

[3] See, for example, his Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids, MI: Eerdmans, 2008).

[4] https://www.facebook.com/denise.humberstone/posts/10155948159319126?comment_id=10155950465429126&reply_comment_id=10155950568324126&notif_t=feed_comment_reply&notif_id=1488705525554890

[5] http://www.joniandfriends.org/blog/world-down-syndrome-day-2017/

[6] “Dear Future Mom” can be viewed here: https://youtu.be/Ju-q4OnBtNU.

The Gift of Finitude

I’ve been thinking a lot lately about finitude. About limits. Incompleteness. Even failure.

Like the friend of a friend who is dying and has just been admitted to hospice, whose young teenaged daughter is facing the prospect of a life without her mother.

Like the colleague who is grieving the loss of both a spouse and a parent within a month of each other.

Like my power wheelchair that keeps breaking down, making everyday activities significantly more challenging.

Like the never-ending “to-do” list that seems to be anything but finite, and never quite seems to get any shorter.

Life is, in a word, full of limits. Boundaries. Unavoidable stopping points.

Or is it?

What if we could transcend our limits, as recent developments in genetic and related technologies (e.g., CRISPR) seem to promise? What if, through genetic manipulations of various sorts, we could significantly reduce our limitations—eliminate specific diseases and disabling conditions, improve cognitive function, “select” for desired physical traits, and so on?

If we could do these things, should we do them?

Of course, as anyone who has followed the field of bioethics for even a short period of time knows, these questions are neither new nor hypothetical. In many ways, the “future” is already here: we “enhance” ourselves, “transcend” limits and boundaries, and otherwise seek to “overcome” finitude in a myriad number of ways, on a daily basis. And much of this is salutary.

Still, it’s always worth pausing to consider: supposing finitude could be eliminated entirely from our lives (which seems extraordinarily doubtful), is it the sort of thing we ought to try to eliminate? Put differently: is there anything good about finitude, such that we ought to embrace it (even if in a qualified way)?

Gilbert Meilaender, a bioethicist and Distinguished Fellow of The Center for Bioethics and Human Dignity, suggests that there is something good about finitude. In a reflection on the “created duality” of our human nature—we are simultaneously both “free” and “finite”—Meilaender observes that this “two-sidedness” to our nature both opens up possibilities and imposes certain limits upon us. We are, he observes,

created from dust of the ground—finite beings who are limited by biological necessities and historical location. We are also free spirits, moved by the life-giving Spirit of God, created ultimately for communion with God—and therefore soaring beyond any limited understanding of our person in terms of presently “given” conditions of life…. Made for communion with God, we transcend nature and history—not in order that we may become self-creators, but in order that, acknowledging our Creator, we may recognize the true limit to human freedom. Understanding our nature in this way, we learn something about how we should evaluate medical “progress.” It cannot be acceptable simply to oppose the forward thrust of scientific medicine. That zealous desire to know, to probe the secrets of nature, to combat disease—all that is an expression of our created freedom from the limits of the “given,” the freedom by which we step forth as God’s representatives in the world. But a moral vision shaped by this Christian understanding of the person will also be prepared to say no to some exercises of human freedom. The never-ending project of human self-creation runs up against the limit that is God. It will always be hard to state in advance the precise boundaries that ought to limit our freedom, but we must be prepared to look for them.[1]

I am inclined to agree with Meilaender. Moreover, as I have shared in an autobiographical essay published recently,[2] my own experiences as a person with a physical disability have taught me valuable life lessons that, arguably, might not have been learned otherwise—lessons such as the value of patience and endurance, accepting my limits (an ongoing struggle, I must admit!), and even the importance of having a sense of humor at the (sometimes ridiculous) circumstances in which one finds oneself. Our limits shape our character, our career, and our life choices as much as do our “freedoms”—often in surprising and unexpected ways, and frequently for the better.

None of these reflections, of course, even begin to scratch the surface of the “what?”, “where?”, “when?”, “how?”, or “why?” questions related to the ethical permissibility (or lack thereof) of pursuing various genetic, reproductive, or other technologies. Nor do they, by themselves, tell us whether (and when) we ought or ought not to avail ourselves of abortion, physician-assisted suicide, euthanasia and the like.

They do, however, remind us of one very simple, yet all-too-often overlooked fact: finitude is, in many ways, a gift. Let us not neglect it.

 

[1] Gilbert Meilander, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Eerdmans, 2013), 3-5.

[2] See “Why am I Disabled? Reflections on Life’s Questions and God’s Answers,” in the Beyond Suffering Bible (Tyndale, 2016), available at beyondsufferingbible.com and http://www.joniandfriends.org/bible/.

Advance Care Planning and its Detractors

The default mode of our technologically advanced medicine is to use our technology. Nowhere is this more true than close to the end of life. And our technology is really impressive; with it, we can keep chests going up and down and hearts beating for a long, long time.

The troubling thing is that there are many people who would rather not have lots of machines keeping their bodies going, thank you, maybe you could just give me some oxygen and pain medicine and let me die at home with my family? But they never get a chance to talk about it with their doctors, mostly due to doctors’ lack of time or comfort in addressing such questions. And, unlike every other procedure in medicine, doctors don’t need your permission to do one of the most invasive procedures of all to you: CPR. Of course, CPR is generally performed on someone who is indisposed and unable to give their informed consent to the procedure. And CPR is often the first step on the technological path of ventilators, tubes, dialysis, medications to support the blood pressure, machines that keep the heart pumping, and all of those wonderful interventions that are life-saving when used appropriately and death-prolonging when used indiscriminately. Treatments that treat . . . nothing.

Ideally, doctors take time to discuss patient preferences about such treatments with patients and their families before the occasion to intervene arises; however, the factors noted above make such discussions rare. Those discussions are ideally an exploration of patient values and expectations from health care, and a translation of those values into appropriate medical interventions. They also identify people who are familiar with the patient and their values who can act as surrogate decision-makers should the patient not be able to make or express their own desires in a particular situation.

Because of the difficulties finding time for these important discussions, it was proposed as part of the Affordable Care Act (aka ACA, aka Obamacare) that Medicare reimburse doctors for the time they take to counsel patients and find out their preferences for end-of-life care. In an act of breathtaking rhetorical deception (aka lying), these discussions with patients, meant to elucidate their preferences for care, got labeled as “Death panels.” (I am not making this up.) The proposal was dropped from the ACA.

Then, in 2015, Medicare started reimbursing physicians for having The Conversation. But last month a Representative King introduced a bill in Congress, deceptively titled the “Protecting Life Until Natural Death Act,” which would revoke such payments.

Fortunately, the bill’s fate is “highly uncertain.” It should never see the light of Congressional day. It propagates the idiocy that lay behind the charges of “Death panels.” And rather than promoting “Natural Death,” it will lead to more people dying anything but a natural death; instead, they will be dying a technological death, hooked to lines and machines and drugs — things they would never have wanted or received had they only had a chance to talk it over with their doctor.

The surprisingly small benefit of some very (expensive) Big Ideas

Last week, JAMA published online a Viewpoint provocatively titled, “What Happens When Underperforming Big Ideas in Research Become Entrenched?” The overarching Big Idea to which the article refers is the “narrative positing that a combination of ever-deeper knowledge of subcellular biology, especially genetics, coupled with information technology will lead to transformative improvements in health care and human health.”

The article highlights three technologies that are integral to the Big Idea but that have not lived up to their promise. The first is genetics/genomics; as an example of unfulfilled promise, the authors trenchantly observe, “Sixty years after the discovery of the genetic defect, no targeted therapy has emerged for sickle cell anemia” — one of the simplest genetic diseases, caused by a single gene. The second is stem-cell therapies; the authors point out one analysis of studies of stem cell therapies, in which the supposed effectiveness of the therapy was directly proportional to the number of factual discrepancies in the published study. The third is electronic health records (EHRs), which have cost billions, but have not realized either the improved care and cost savings that were their major selling point.

Despite the lack of evidence of real benefit, these three technologies have received vast amounts of NIH and government monies. The article recommends changes such as the “NIH should fund many more high-risk, unconventional ideas instead of supporting the same familiar highly funded research fronts.” It also calls for accountability for funded studies to show real benefit.

The article’s title asks what happens when underperforming big ideas become entrenched — vast amounts of money and energy are wasted — and suggests solutions. But the article does not address why those Big Ideas have become entrenched in the face of all evidence, and this must be addressed before solutions can work. I do not pretend to have a definitive answer. But I think there is an even Bigger Idea that overlies all of these lesser ideas: the idea that more technology is inherently good, and in higher-tech medicine will be our salvation.

For example, look at those things that have been shown to make “transformative improvements” in mortality, morbidity, and life expectancy: Quitting smoking. Getting off the couch and doing a bit of exercise. Eating your fruits and veggies. Getting immunized.

Now, which sounds more exciting for research funding: stem cells that we confidently assert can cure Parkinson’s even though we can’t quite prove but it’s pretty obvious that they should, or finding ways to get more grocery stores into poor neighborhoods whose most affordable food source has golden arches in front of it?

The End of Meaningful Use: A Meaningful Opportunity

The Centers for Medicare and Medicaid Services (CMS) Acting Administrator Andy Slavitt said Monday that 2016 would likely see the end of the meaningful use program. Meaningful use is a carrot-and-stick government program designed to get medical providers to use electronic health records (EHRs) and to set standards for using them. The carrot: medical providers who show compliance with meaningful use regulations get incentive payments from the government. The stick: those who do not are assessed financial penalties (257,000 received penalties in 2015).

***

The latest Mayo Clinic study on physician burnout shows that in 2014, 54.4% of physicians admitted to at least one symptom of burnout. This is up from 45.5% in 2011. In the non-physician population, the number is about 25%.

***

Why the burnout? Lots of reasons, but a major one is that many doctors are spending a lot of time doing things that are not just peripheral to what we went into medicine for, but inimical to it.

When I decided to go into medicine almost thirty years ago, I wanted to do work that didn’t involve sitting in front of a computer all day. My father was a computer systems analyst, and while he brought home cool stuff from the office, I wanted to work with people. So I chose medicine. And somewhere along the way, something changed.

Like many doctors, over the years I found myself spending more and more of my patient care time staring into a computer screen. This in and of itself might not have been so bad, except that it was time taken away from the time I used to spend looking at my patients: looking them in the eye, observing the subtleties of their body language, watching how they breathe or fidget or tremor. And increasingly, the time in the computer was spent doing things that satisfied “Meaningful use” standards, but in no meaningful way improved the care I was providing to the person in the room; in fact, it detracted from care by taking the finite resource of the time I spend with patients and wasting it on irrelevancies. Instead of serving patients, doctoring began to feel like serving the machine, responding to its needs in preference to the needs of patients. Unsurprisingly, a lot of doctors feel this way.

Serving machines instead of people: a good recipe for burnout. The CMS may finally be figuring that out.

Meaningful use was based in part on the blind faith that technology is good, so more must be better. That’s why, in Andy Slavitt’s words, it “reward[ed] doctors for the use of technology.” Think about that: a program that rewards doctors not for improving patient care, or fostering better patient-physician relationships, or making contributions to medicine, but for . . . using technology. Might as well pay us for using smart phones.

Current EHRs have been designed (from all appearances, without knowledge of what physicians actually do in the office) to facilitate increased billing  and to meet meaningful use. Getting rid of meaningful use is an opportunity to completely redesign EHRs — using what physicians actually do as a guide — to make them a useful adjunct to the practice of medicine, rather than a burnout-promoting waster of colossal amounts of time; to enhance (or, at the very least, not detract from) the patient-physician relationship; and to put the patient rather than the technology back at the center of what physicians do.

This may require hefty changes, the complete rethinking and redesigning (maybe scrapping) of current EHR systems. This could be disruptive; but sometimes, when you make a mistake, the best thing to do it to go back and erase it and start over. And if change resulted in doctors getting back to being doctors, I think most of us would welcome it. As Slavitt said on Monday, “We have to get the hearts and minds of physicians back. I think we’ve lost them.” Using this opportunity to completely rethink and overhaul EHR systems is a good way to see that happen.

 

 

 

Technique and Eugenics: my response to the question Jon Holmlund asks about gene editing

Jon Holmlund has asked in this blog whether germ-line modification for the purpose of eliminating genetic diseases (NOT for enhancement), if it could be done safely and equitably, would be ethically acceptable. I argue no, for at least three reasons: we humans are virtually incapable of limiting our use of technology, the technology of gene editing is inescapably eugenic, and we humans are incorrigibly eugenic. Following is an extremely abbreviated explanation of my argument.

First, there is no chance that this technology could be limited to the narrow usage Jon describes. We like to think that technology is value-neutral, that it’s just tools; so maybe we could just choose to use this tool for a particular good purpose without using it to create a Gattaca or a Brave New World in which we witness the Abolition of Man. But as Jacques Ellul has pointed out, “It is useless to think that a distinction can be made between [a] technique and its use, for techniques have specific social and psychological consequences independent of our desires. There can be no room for moral considerations in their use…” (Fasching, The Thought of Jacues Ellul, 18). Ellul called this characteristic of technique monism: a technique is inevitably applied everywhere it can be applied.

Second, as Neil Postman has written in Technopoly, every new technique carries within itself an idea, an ideology; the idea in the technique of germ-line modification, as in all genetic technologies, is eugenics. In medicine especially, we see again and again that technology is used “as defined by the capabilities of the technology . . . even contrary to the best interests of the sick person.” (Eric Cassell, “The sorcerer’s broom: medicine’s rampant technology.” Hastings Center Report, 1993;23:32-39.). One need not look far in medicine to see examples of technology employed in a manner defined not by patients’ best interests but by the technology itself: robotic surgery, CPR, or all of the permutations of infertility treatment.

Third, we humans seem to be incurably eugenic. From Plato’s Republic to Nazi Germany to today’s prenatal clinics, we pursue eugenics despite all warnings from history about what the inevitable conclusion of such policy is.

To recapitulate: In a technology-worshipping society such as ours, the “choice” to use a technique is virtually automatic. The idea at the heart of gene editing is eugenics. Our species, for whatever reason, possesses strong eugenic tendencies. Thus, since this technology could be used for eugenic purposes to edit genes to create “designer babies,” it will be used for those purposes. Therefore, I do not believe that it is ethical to pursue research in this area for the ostensibly good purposes that Jon postulates.

Great (if Unrealistic) Expectations

Good ethics begins with good facts. Right decisions and truly informed consent require correct information — or, at the least, the best information we have — and accurate expectations. A review recently published in JAMA Internal Medicine online suggests that this most basic condition for making good decisions is, in many instances of medical decision-making, lacking.

The article reviews studies that evaluated patients’ expectations about the potential harms and potential benefits of various medical procedures, including screening tests, diagnostic tests, medications, and procedures. The results are perhaps not surprising: the majority of patients overestimated the benefits and underestimated the harms of a host of interventions, from mammograms to cholesterol-lowering medications to prenatal ultrasounds to coronary bypass surgery.

There are no doubt many reasons for this. One is that many health care providers themselves don’t understand the potential harms and benefits of the things they order. Another is our society’s technical orientation: the imperative to just do something about it, and the belief that doing something is always better than not doing anything. Advertising — from sources like direct-to-consumer drug advertising, pharmaceutical reps, specialty “centers” (such as cancer centers), companies that go around performing ultrasound screening for a myriad of ailments — is more often designed to obfuscate and create unreasonable desires and expectations than to clearly inform. Our current medical system often pays doctors based on “production” — cranking through as many patients as possible as quickly as possible — which does not lend itself well to taking the time to sit down and discuss whether the potential benefits of a test or procedure really outweigh the potential harms. And our current medical system rewards doctors for doing stuff to people more handsomely than for taking time with them.

The results of these mistaken expectations? Patients with false expectations are in essence giving uninformed consent to tests and procedures. And the more good we think tests and medicines and procedures will do, the more we will perform and prescribe them, the more unwieldy the cost of healthcare will become, and the more healthcare dollars we will waste on less-than-beneficial interventions.

The solution? None I can think of that are easy, unless incentives in medicine are changed. Until the time doctors spend with patients is valued as much as the things they do to them, until subtly misleading and manipulative advertising is reined in, until we understand and accept concepts like “All screening tests do harm; some screening tests do good,” until we understand and accept the limitations of medicine, we will not be able to curb the bloated “appetite that people have for medical interventions.”

An Ethics of Complexity

As a long-time member of the military medical community, this article caught my eye: “1 in 5 Army hospital leaders suspended in 2 years: What’s behind the discipline?”

The reasons for these suspensions are known only at the highest level of command, and I suspect that there they will remain. But such a circumstance is significant, and we must ask for the reasons, to determine if they are relevant to all of us in the healthcare profession, and not just to our military medical leaders.

In my decades-long experience with dozens of hospital commanders I have found that they are professionals of the highest integrity, dedication, and ability. They achieved their roles after years of challenging jobs, most certainly in the trying times since 9/11. They have ample leadership experience before being selected as hospital commanders, and the scrutiny and accountability they faced to get there is testimony to their abilities. It doesn’t take much of a slip to put one out of the running for hospital command.

But this level of scrutiny has become magnified in our age of technology and instant communications. Within large organizations vast amounts of information flow up and down the chain of command at the speed of light through fiber optic cables. Data is tracked, analyzed, and reported, requirements are created, and information is sought, gathered, pushed, scrutinized, speculated on, and multiplied. One effect is to have leaders constantly under surveillance, not from any mal intent, but from the pressures to succeed and avoid failure. When formerly errors might have been overlooked, found late, or simply not seen as errors, they now can be seen instantly and broadcast far and wide. If “to err is human,” there is diminishing room to be human.

In a small example–a few years ago I became the physician representative for my hospital’s implementation of an organization-wide initiative. The program was sound in concept, useful in practice, and beneficial to medical staff and patients alike.

The problem came as we watched the organization inch its way toward implementation. Nobody objected to the concept and it’s utility. Leaders and staff were simply too preoccupied with other demands. I as well did not pursue all the potential uses of the system simply because I already had my hands, and mind, fully occupied with everything else I had to know to practice medicine and use the existing computer systems.

I realized that if I, who am sought out as someone who can work through the complexities of technology, is at his limits in what he can attend to, then the organization is unlikely to get much more from either its busy leaders, or from physicians who have less patience or facility with the demands of technology.

I doubt that anyone can escape this phenomenon, for the complexity and scrutiny exist at any level, albeit in varying forms. We cannot afford to ignore it or simply acquiesce, for if the best among us fall, then the rest of are less likely to even try.

This steadily increasing complexity contrasts with a passage I recently re-read in Richard Swenson’s book, Letters to a Young Doctor: “There is no more beautiful sight in the world than that of a kindly, efficient doctor engaged in the examination of the body of a fellow human being.”

I wonder if such a passage makes sense to many people today. But what struck me is that part of the beauty was a simplicity unencumbered by the distractions of modernity. We decry “technology” but can’t separate ourselves from it. It’s not the technology itself from which we wish to be liberated, but the complexity that it brings.

What we need, then, is an “ethics of complexity” within the healthcare profession. This would measure the modern trends and pressures on and within healthcare by their tendency to create complexity, and thereby overburden and distract both healthcare professional and patient from the pure and ultimate goal of establishing a lasting therapeutic relationship, or covenant, as described by William May. The goal, then, of organizations, leaders, staff, and even patients, would be to identify complexity when it arises, and modify systems to mitigate it. I only hope that this one additional consideration doesn’t just add to the problem of managing healthcare.

An “ethics of complexity” would be grounded in the idea that mankind, in all his abilities to create and adapt, still has a limit…and that to push this limit is to begin to sacrifice something critical to our humanity. For those physicians who still sense the beauty of the doctor-patient relationship, such a recognition is overdue.

Meaningful Use and Justice

As part of the 2009 economic stimulus bill, Congress passed the Health Information Technology for Economic and Clinical Health (HITECH) Act. Among other things, this act sought to increase the adoption of Electronic Health Records (EHRs) by providing financial incentives to adopters of certified EHRs who met certain benchmarks by a certain timeline. These benchmarks are known as “Meaningful Use.” To receive the financial incentives — up to $63,750 over six years beginning in 2011 — “providers” must attest to compliance with Meaningful Use. That this is a much larger task than originally assumed was demonstrated by the decision last month of the Center for Medicare & Medicaid Services to push back the timeline for reaching compliance with Stage 2 of Meaningful Use, acknowledging problems with the implementation of the required technology.

Last week a report on the progress of Meaningful Use showed that practices which serve primarily minority populations, and practices in areas with the highest levels of poverty, were least likely to have attested to Meaningful Use — and thus least likely to receive any financial incentives.

The cost for startup of an EHR is substantial– estimated to be at least $40,000 to $100,000 per provider. The cost for training, upkeep, upgrades, etc., are never-ending. The time involved in learning and maintaining such systems is also significant.

Areas with higher minority populations and higher rates of poverty are some of the most medically underserved areas as well. There is less money flowing than in more affluent areas, and there is less flexible time in the schedule, as there are fewer physicians seeing greater numbers of patients.

Therefore it appears that one of the unintended consequences of the Meaningful Use program is that those practices that have the least resources to spend on an EHR are the least likely to receive any financial stimulus, while those practices that have the resources to pour into purchasing and upgrading EHRs and training people to use them are more likely to receive financial aid. Those that need it the most don’t get it.

The Federal Government is pushing hard for EHRs (next year, Medicare will start penalizing physicians who don’t use them). It has set up a benchmark program that financially rewards those who are most financially well off, thus increasing existing disparities. It should restructure this program in such a way that it at least does not tend to increase disparities.

 

What Makes Doctors Happy

The Rand Corporation recently published a study of determinants of physician professional satisfaction, and their implications for patient care. One of the “most novel and important findings” related to electronic health records (EHRs).

The study found that EHRs affected physician satisfaction both positively and negatively. Physicians like the idea of EHRs, and appreciate their “promise” to improve patient care and thus professional satisfaction. However, the current reality of EHRs significantly detracted from physician satisfaction for multiple reasons,including, “Poor EHR usability, time-consuming data entry, interference with face-to-face patient care, inefficient and less fulfilling work content, inability to exchange health information between EHR products, and degradation of clinical documentation.”

I can personally testify to the validity of these findings. I have had the opportunity as a family practice doc to work extensively with two EHR systems. One is considered the “Cadillac” of EHRs, and the reputation fits: a bloated, lumbering, energy-guzzling EHR with lots of bells and whistles and a hefty price tag. The other one—well, let’s just say that using it, one gets the impression that the programmers made sure there were no physicians within 100 miles of them who might contaminate their EHR design with concepts of how actual physicians function.

Both of these EHRs are certified for something called “Meaningful Use.” This is a set of practices that EHRs must be capable of, and physician offices and hospitals have to implement, in order to receive bonus payments from the federal government and avoid penalties. The practices include things like E-prescribing, providing patients with an electronic copy of their health information, and generating patient lists for specific conditions.

But some things are absent from the requirements for Meaningful Use, like usability, and doesn’t detract from patient-physician interactions. A new report documents what most doctors already feel: that increased use of EHRs means less face-time with patients. For many if not most physicians, it means lots of time gazing into a screen and keyboarding that used to be spent face-to-face with patients. We spend time tending charts that used to be spent tending patients. I can confidently assert that most doctors did not go into the clinical practice of medicine because they prefer data-entry over relationships with patients; but this is what the current generation of EHRs has handed us.

The federal government defines “Meaningful Use” as “Use of EHRs in a way that positively affects patient care.” Positive effects on patient care can (theoretically, at least) come about by the data storage and manipulation capabilities that computers offer. But if they come about at the expense of that which is central to every human relationship—looking into the other’s face, body language that says, “What you are expressing to me is so important that I will give you my complete attention,” not multitasking—then perhaps the negative effects have overbalanced any theoretical positive effects. One of the dangers of EHRs is the old “To a patient with a hammer, everything looks like a nail” conundrum; to a person with a computer, everything looks like data. When we define “Quality medical care” solely in terms of what we can count and measure, when we value data over relationship, then “Meaningful Use” becomes a meaningless slogan.