A patient stands out from my early days as a physician. She was a person of little education, of a socioeconomic class that few valued, in her sixties with advanced lung cancer. Already beyond a surgical cure, there were chemotherapeutic agents that the data showed might help, though only in small numbers of cases, and with significant risk of side effects. So I went to her room and offered her this powerful option.
She said she wanted to go home instead.
I could not understand it. This was a stage of my career when I was particularly enamoured with the knowledge of medicine as a power that would unfailingly do good. So I could not grasp her refusal of the only measurable hope for good.
Yet in retrospect, her understanding of what was good exceeded mine. Her final months were full of family, full of life, and ultimately full of the best health possible. It could not be measured, it did not fit within the lines of medical knowledge, but it was wise and good, because it conformed to the shape of her life.
Do you remember as a kid painting pictures by numbers? As long as you stayed inside the lines and followed the colour code, you got a pleasant picture. And of course, the more you conformed to the formula, the more your picture looked the same as everyone else's picture. I wonder if our array of health care institutions is "painting" pictures of human health in the same limited way.
In June, 2013, the American Medical Association drew new lines in the landscape of health care in the United States. At its annual meeting in Chicago, they declared obesity a disease. Many would observe this decision with incredulity—how could a body size be called a sickness?—but the standardization of lines and colours created by this label is significant. Labels draw attention and funding. The insurance industry will more likely respond to pressure to cover treatments, including anti-obesity pills and bariatric surgery. It doesn't take much to imagine liposuction, fat-freezing, and other soon-to-be developed fat-removal strategies as technical solutions in our health-care future.
The obesity "epidemic"—note the reinforcement of the disease model in applying medical terminology to a weight/height classification—is associated with a wide range of medical conditions, including diabetes, osteoarthritis, chronic back pain, and heart disease. But to classify associated pre-conditions that sometimes lead to specific diseases as diseases themselves suddenly and decisively extends the authority of the medical industry over the lives of many previously "non-sick" people. Not explicitly acknowledged in the public discussion are some of the indirect consequences of squeezing people into technically defined categories:
Here we see an expansion of medical authority based on a biometric measurement—and this is just one of a series of changes in the practice of medicine and the pursuit of health in North America over the last fifty years. A similar decision was made in 2009 when pain was declared a disease. We have already seen the counterproductive consequences of this reductionist attitude. Under the cover of the diagnosis of pain as a disease, the medical indications for the use of narcotics has expanded, running in concert with the widening expectations of society for a medical fix for pain. We now face the perplexing result that drug overdose deaths from the use of legal prescription drugs exceeds that from illegal drugs, specifically heroin and cocaine; at the same time we have a large group of people unable to stop their daily narcotics even though they continue to live without true relief or better function.
The power of medicine to define what belongs under the curve—a "medicalization" of society defined by some as the most significant social transformation of the twentieth century—is particularly worrisome because the classic bell curve is also called the normal curve. Outside it you're not normal. Aside from the psychological implications of your new "abnormal" status, the very social institution that reduces you to the wrong side of the measurement at the same time assumes the right to bring you back inside the curve. Standing alone before the power of modern institutions, most individuals, whether it be about the correct number for cholesterol, the proper size of your body, or the normal level of anxiety or hyperactivity, have little ability to resist this "medicalizing" dynamic.
The reduction of health to a series of technical definitions and solutions—health by numbers—has become the operating model of our modern health-care systems. It has served us well in the practice of medicine. It produces efficient models and measurable outcomes. Applied to individual patients, we are able to associate symptoms with cause, leading to the diagnosis and treatment of malfunctioning parts. But when symptoms stray out of the ordinary, too often we fall back on our painted lines. Too easily we focus on the medical chart, interpreting the results of liver or kidney tests, when multiple signals of voice, body posture, and language are trying to communicate a whole-person experience of sadness and distress. We fall into a distorted view of what it means to be healthy.
The institution of medicine has made promises it cannot keep, based on a view of human nature that is not true. Medical gnosticism repeatedly turns every limitation—pain, obesity, anxiety—into a technical problem to be solved. The result is a bloated health-care system that is costly, inefficient and unjust. Individuals become a herd of nameless members, reduced to "average or median Man," an abstract, disembodied construct whose health is managed in the statistical outcomes of populations.
When we label a weight classification a disease, or the sensation of pain a curable condition, the good that we gain by giving people access to help is heavily offset by acting as if complex realities are easily solved problems. It ultimately reduces personal responsibility, for a problem technically defined must have a technical solution.
The patient from my early days knew it: the true nature of health is found not in individual pursuit and control but in community and caring.
Incarnation, and Institutions
The scientific view assumes that the person, and the community in which he lives, is inadequate for the task. Professional care is needed, and it is executed technically, measured a success numerically, and calculated in population statistics by necessity, because only large numbers can reveal good outcomes.
The knowledge we gain by numbering reality is a fruit we have been picking since the dawn of the Scientific Age in the seventeenth century. For much of the history of this age, we have used it well. But our efforts to gain power over life can lead us to blunt applications that have no meaning for those individual lives that do not fit within the lines we draw.
In The End of the Modern Age, the Catholic priest Romano Guardini speaks of the danger of knowing separated from experiencing, and of power divorced from person. He uses the dramatic example of a plane dropping a bomb that kills thousands of people in the cities far below. The pilot is capable of knowing and causing such an act, but is no longer capable of experiencing it. Our greatest defense against this error is when knowledge as power is informed by personal story; in the case of health care, we must allow the content of our patients' lives to bend our knowledge toward the end of wisdom. (See more of Guardini's thoughts on the mystery and dignity of human life in Robert Krieg's excellent article in Comment, 2008.)
Medicine is moving towards systemization and categorization at the speed of light. The great gains we have made, and can still make when we use knowledge wisely, give way to deep corruptions of reality if we force everyone and everything into the world of facts we have constructed. We may prefer this world, predictable and protected from the risk of personal involvement, but we don't have to choose it. We can recognize the high cost of dis-integrated life.
At the core of our care, how we treat patients will depend upon how we see people. If we desire an institution of medicine that serves the common good, we will need to inform its practice through a decisive element of the Christian message—that God is mysteriously present in the embodied life of everyone we meet in health care. This incarnational truth is risky and fragile. Some will ignore it, seeing in others mere dignity, or less. Some of these may even, by common grace, do much good in health care. But proper ordering of our own lives and institutions requires more. The practice of medicine, if it is to fulfill its mandate to care for the sick and protect the health of society, must continually struggle to find balance between the abstract knowledge of science and the concrete reality of individuals. Recognizing the image of God in each one offers the best hope when the power of knowledge risks overwhelming the truth of persons.
It is best to conclude with a very small moment, because the truth of the Incarnation is often so small that we miss it. Very early in the gospel story, we're brought into the house of Simon Peter, whose mother-in-law lay sick with fever. It is not difficult to see the personal nature of the relationships in view, nor is it surprising that Jesus gave tender one-on-one attention when he took her hand and healed her. But what follows challenges our assumptions of the possible. After the sun had set on this Sabbath day, the doors were opened, and all who were sick with various diseases—it is safe to presume there are many, as the entire city of Capernaum was gathered at the door—were brought to him. Luke, the physician, most carefully describes the action: "laying his hands on each one, he healed them" (Luke 4:40).
The patient must stand out. Our health care has no future if we fail to embrace the "each one" love of Jesus Christ. Care, if it is to be called good, must take place in embodied, personal, and trustworthy relationships, full of risk but filled with hope. In a health-care system of efficient machines and monitors, we measure good outcomes when people colour within the lines and everyone's picture looks the same—but that's not life! Unless we are willing to touch each one, uniquely shaped and formed within their family and communities, we will fail in our pursuit of true health and healing.
This article first appeared in Comment Magazine on January 23, 2014. Bob Cutillo is a physician in Denver, Colorado and is on the board of Denver Institute for Faith & Work.