The teen had been referred to the ED for evaluation of a mediastinal mass found on a chest X-ray; he and his mother both knew his primary physician was worried about cancer. We performed a CT and a slew of lab tests. The lab tests were pretty non-specific and not overly concerning. As we reviewed the test results with them, the patient said, “Yeah, but I’m gonna die, aren’t I?” At that particular moment, when we didn’t even have a diagnosis, much less a prognosis, I was more focused on whether he had laboratory signs of blood stream or organ involvement. He couldn’t have cared less about a white count or liver enzymes – he wanted to know if he was going to live.
Providers often find themselves focusing on things that are at best of indirect interest to our patients. Nobody cares what their hemoglobin A1c or HDL level is (except for a few hypercompetitive types who brag about their biometrics after their screening), except to the extent that they are indicators of what truly matters – mortality or morbidity. People don’t want a healthy blood pressure, they want a healthy life.
Why have we not paid more attention to these patient-centered outcomes? One thing is, we like to measure what we can affect. I may be able to improve someone’s pulmonary function with an inhaled steroid; the link between the prescription and their overall quality of life is more tenuous. It’s also more difficult to measure something as abstract and multifactorial as “quality of life.” At the very least, tools for determining patient-centered outcomes can be more time consuming to use, and if not properly developed may be less valid and reliable than “hard” measures such as lab results. There is a developing science around measurement of patient-oriented outcomes. The Patient Centered Outcomes Research Institute (PCORI), created under the Affordable Care Act, serves as a promoter and funder of efforts to advance such measurements. But, while there are a growing number of tools for measuring both disease-specific and generic quality of life across the age spectrum, such tools are not incorporated into routine clinical care.
There has been much discussion of “meaningful use” of the EHR. But if you look at many of the measures, one can ask, meaningful to whom? Documenting BMI, keeping INR in a certain range for patients on warfarin, prescribing steroids for patients with asthma – I doubt very much that our patients care about these in and of themselves. If we want the EHR to be truly meaningful, we should think about incorporating patient-centered outcomes into the record. This would promote discussion of these outcomes with patients and families, and allow us to determine how effective our care is in improving them.
It’s pretty clear that by looking only at conventional measures of effectiveness, we are missing a big part of the picture, the part that matters most to the people we are trying to help. A conventional measure of success of ED treatment of acute asthma is discharge to home (with a prescription for systemic steroids), and no unscheduled return visits within a set period (usually a week). By that measure, the ED where I used to work did a good job. But when we looked at patients “successfully” discharged to home, we found that nearly half had either prolonged symptoms, substantial missed school or day care, or significant activity limitation. While we were congratulating ourselves for keeping these children out of the hospital, they were sitting at home coughing and wheezing and being miserable.
If we are going to act in the service of children and families, we need to understand and measure what is important to them – to have a mutual understanding of what constitutes “success.”
Starting With Curious 
Great post. Your comments on “meaningful use” and patient-centered outcomes definitely made me stop and think about those things from a different perspective. Thanks for sharing.