Dr. Centor and others often write about measurement of outcomes, lately calling them the “Holy Grail of quality.” (edited to add: which, like the Grail, even he agrees are unattainable.) Quality, of course, is the latest meaningless buzzword applied to health care, as people other than doctors and patients (the only true “stakeholders” in this endeavor) try to justify pocketing a larger share of the benjamins ripped from the pockets of employers and consumers.
Everyone is struggling to define quality. The reason for all the conflict is simple: quality in healthcare, as in many other facets of life, is undefinable inasmuch as it means different things to different people. Akin to both beauty and pornography, quality is in the eye of the beholder, and one knows it when one sees (or experiences) it.
Now along comes the concept of looking at “outcomes” as a measure of quality. Even as some people seem to feel that, although trying to study outcomes is difficult it is still worthwhile, I submit that in the larger sense of what we do, it is as meaningless to define “outcomes” as it is to define “quality”, much less use one to get at the other.
An outcome implies a static state of being at a specific point in time. It makes more sense to apply the term to discrete events like surgical procedures. Whether a patient emerges from an operation alive or dead, better or worse off, are distinctions that make sense to track. But when it comes to chronic medical conditions — or even just caring for healthy people through their entire lifetime — the situation becomes far more fluid.
Take diabetes, a disease caused by a genetic predisposition triggered by lifestyle issues, and one in which measurement of “outcomes” is frequently discussed. Say I diagnose a patient with diabetes, provide appropriate education about diet and exercise, and in six months the patient has lost 40 pounds and brought her A1c from 10% down to 6%. (This is not the least bit unrealistic, by the way.) By most current quality metrics, this is considered a “good outcome.” Now what? I continue to see her every 3-6 months. After a year or two, say she slips up a bit; puts a bit of the weight back on, and sees her A1c rise to 8.5%. Is that a bad outcome? Say she comes back in and we do some more dietary counseling and brainstorming, understanding that the disease is not going to go away and needs constant vigilance on her part. Say she gets things back under control; for another year or two, and then relapses again. Back and forth; over and over. What are we looking for as the “outcome”?
Age to first MI or stroke? How long the patient can go before needing dialysis? Legitimate rubrics for population research, but meaningless for a given patient, say, trying to select a “quality” doctor.
Blood pressure control that waxes and wanes as someone’s weight balloons up and down. Fitness that comes and goes as someone enjoys exercise during the pleasant summer weather but can’t get around to it during the school year. Arthritis pain that peaks after a hiking vacation. This up and down course of exacerbations and remissions, ups and downs, is not only common, but virtually universal in managing just about every chronic disease there is. Congestive heart failure; ulcerative colitis; depression; you name it, there are countless conditions that cannot be cured, only managed, as they come and go with the ebb and flow of fickle humanity.
If you want to look at outcomes, consider oncology. Even if a patient is “cured” of their disease, they will surely succumb eventually, either to their cancer or to something else. Using “outcomes” as a quality measurement, why would anyone ever refer to hospice? Every last one of their patients has exactly the same outcome.
Then again, isn’t that really the ultimate “outcome” for all of us?
Many of us feel that the quality (there’s that unmeasurable, undefinable word again) of our days is more important the just their mere quantity. What is lost in the discussions of outcomes measurement is the idea of life as an ongoing journey, where any given “outcome” is so temporary as to be meaningless.
I’m reminded of one of my favorite parts of the Jewish liturgy, a poem by Rabbi Alvin Fine:
Birth is a beginning
and death a destination
And life is a journey:
From childhood to maturity
and youth to age;
From innocence to awareness
and ignorance to knowing;
From foolishness to discretion
and then perhaps to wisdom.
From weakness to strength or
from strength to weakness
and often back again;
From health to sickness
and we pray to health again.
From offense to forgiveness,
from loneliness to love;
From joy to gratitude,
from pain to compassion;
From grief to understanding,
from fear to faith.
From defeat to defeat to defeat
until looking backwards or ahead
We see that victory lies not
at some high point along the way
but in having made the journey
step by step,
a sacred pilgrimage.
Birth is a beginning
and death a destination
And life is a journey;
A sacred journey to life everlasting.
We have the honor and privilege to accompany our patients on this journey of theirs, as we walk alongside as fellow travelers. This is what we have lost sight of: the outcome is the same for us all.