Quality or Conformity Revisited

In 2009 I wrote a post titled “Quality or Conformity“, where I pointed out that many of the quality measures in primary care have more to do with whether doctors follow guidelines than if they deliver care that helps patients live long and well. There is a tendency to focus quality efforts on measuring what is easy to measure, rather than what matters the most.

That phenomenon is called the Streetlamp Effect, named after the man who was found searching for his car keys not in the dark alley where he lost them, but under the corner streetlight where he could see better.

Last night and tonight I read four articles in The New England Journal of Medicine and JAMA that made me think again about how elusive an ideal quality is in primary care.

The Case Record of the Massachusetts General Hospital for the week of May 23 was a 12-year-old girl with celiac disease, behavioral symptoms and fatigue. Her final diagnosis was Addison’s disease, a deficiency of the body’s natural steroids. The piece mentioned that most sufferers of this condition live with its often-debilitating symptoms for 2-5 years before diagnosis. The girl in this article had been hospitalized several times before the correct diagnosis was made (at MGH, of course!).

The other piece in The New England Journal was about how Fee-For-Service payment was going to go away and be replaced by payment schemes based on relative value units and adherence to clinical guidelines for chronic disease. This piece specifically mentioned that treatment of (acute) illness would have far less value than managing chronic diseases.

I thought of the man who had been to the emergency room twice before I diagnosed him with scabies a few months ago. Doesn’t accurate diagnosis with new presenting symptoms count for anything anymore?

The first article in JAMA was a very broadly written piece about the future of quality measurements under Obamacare. The second article, written by a group of primary care doctors, was titled “A View From the Safety Net”. These doctors described the difficult choices they had to make between doing what mattered most to their underserved minority population or scoring better on quality measures dictated by outside authorities when they didn’t have enough staff or money to do both. The Obamacare article mentioned striving for patient-centered measures, but it remains to be seen how patient-centered we are going to be allowed to practice in the future.

Quality is still in the eye of the beholder. People in Government, insurance and academia prefer easily quantifiable data and still hold on to arbitrary or outdated numeric targets, even when the evidence to support them is controversial or refuted by science. They are often like the man under the streetlight.

Doctors on the frontlines, who live and breathe the complexity of health, disease and patients’ everyday socioeconomic challenges, know that for every clever metric someone can think up to measure quality, there are countless other factors that can render the quality parameters meaningless. What good does it do to prescribe the right medications for someone with chronic illness when the patient can’t afford them or keeps forgetting to take them?

In the same month my original post was published in 2009, for example, the American Diabetes Association revised its blood sugar targets for older diabetics. The evidence has shown that our usual targets were low enough to cause harm to many frail patients, yet doctors in this country are still given poor report cards if they practice with their patients’ safety and the new evidence in mind.

So, what is quality?

Quality is easing suffering and giving hope, not crunching numbers.

Quality is treating each patient in a sensitive, caring and competent manner.

Quality is serving the patient’s best interest with societal good in mind, not serving society with only an eye toward the individual patient.

Quality is having not only systems to promote safety and good practice, but people who care and invest their talents and abilities for the good of the patient.

Quality is diagnosing a rare disease like Addison’s early enough to give an adolescent girl her teenage years before they are gone.

Quality is making the diagnosis of a common disease like scabies in five minutes in a patient who has already cost himself weeks of discomfort and his insurance the dollar value of two emergency room visits and three prescriptions.

Quality is doing what matters to the patient. If we accept, even endorse, patients’ right to decide whether or not to be resuscitated if their hearts should stop, aren’t we then also allowed to listen to our patients and together with them formulate a care plan that they feel comfortable with for their chronic illness without fear of retribution by some Government or insurance reviewer for not following some more or less arbitrary guideline?

Quality is a word that lacks universal meaning. Every dictionary I have looked in has scores of definitions. It is a word people use for their own purposes.

We must be careful about letting others define the standards for our profession. If people with a more financial and less scientific and humanistic viewpoint set all the standards, technicians and computers will replace doctors.

The quality of a church service is, in my opinion, not adequately measured by how freshly painted the murals are, how well matched the choir uniforms are, how well-shaven the minister is or how clear his voice is when he puts his notes aside and speaks from the heart. If the Government were to set quality standards for churches, those things might be major quality indicators.

Fortunately, Church and State are separate in this country; health care and Government are no longer.

Health care, like religion, has a lot of intangibles, and even its substance is the source of many disagreements. I think that just like people go to church for different reasons, they seek health care for enough different reasons that our quality measures need to be very patient-centered, without losing sight of our “substance”, our foundation of science and humanity.

Quality is about addressing both the intangibles and the substance. Most of us know it when we experience it ourselves; the problem is building systems that guarantee it.