The following is a guest post by Dr. Jessie Gruman. This blog post was originally published at Prepared Patient Forum: What It Takes Blog
“My doctor can titrate my chemotherapy to the milligram but can’t tell me when I am going to die,” a friend who was struggling with his treatment for cancer complained to me a couple years ago.
Had he lived, he might have been reassured by the announcement last week of a new scale that allows clinicians to estimate the time remaining to people with advanced cancer. He was spending his final days “living by the numbers” of his white blood cell count, the amount and size of his tumors and suspicious lesions, the dosage of various drugs and radiation treatments. And he was peeved about what he saw as a critical gap in those numbers. He believed (hoped?) that because his cancer was quantifiable and the treatment was quantifiable, that the time remaining should be similarly quantifiable. He needed that information to plan how to use the time that remained.
Many of us would make a different choice about knowing how long we will live when we are similarly ill. But most of us are attracted to the certainty we attach to the numbers that precisely represent aspects of our diseases.
It is not just when we are seriously ill that numbers dominate our experience with health care. Advances in technology have made it possible to quantify – and thus monitor – a seemingly infinite number of physiological and psychological health-related states. For instance: weight, blood pressure and cholesterol level, hemoglobin A1c level; the range of shoulder mobility; the size of a hernia; the risks discovered when we undergo genetic testing during pregnancy; the probability of developing diseases based on our smoking, physical activity and bike helmet-wearing; the amount of pain or sadness we feel.
Most of these numbers represent a marker that is potentially modifiable by some action we can take, often with guidance from and in collaboration with our clinicians. But while a change in a number may affect the course of treatment or indicate a higher or lower risk, it doesn’t guarantee a certain effect or outcome, as much as we would like it to.
These few familiar examples represent only a tiny fraction of the health-related numbers that compete for our attention over the airwaves and online. We can purchase a whole raft of numbers about ourselves by getting a full body scan or having our genome read. Apps on mobile devices and various bands and devices allow us to monitor every heartbeat, every breath, every fluctuation in sleep, attention and anxiety. And practically every month will bring something new for us to measure.
What do we do with all these numbers? Are all of them important? Are some more important than others? If so, which ones?
We vary widely in the amount and type of information we want about our health. If we are to benefit from the health care available to us, all of us need to be acquainted with the top few numbers that are relevant to our specific situation and history. We should understand the numbers that put us in particular danger of illness or injury, and for which there is an action we can do (or can be done to us) to improve them. We need guidance from our clinicians to separate the wheat from the chaff over time: today as I decide about getting a mammogram, next year when I get a new diagnosis, and afterward, as I make my way through treatment. Which numbers are imperative that I attend to, which are optional and which are irrelevant?
It may be the allure of health-related numbers comes less from the specific information they convey than from the illusion they support: that the practice of medicine is governed by empirically based algorithms, with effective strategies that can be used to “manage” the numbers, thereby reducing or curing the disease or symptoms. My friend who was annoyed by his doctor’s inability to tell him how long he had to live shares with all of us the desire for predictability and perceived control of our health and illness. So just what’s wrong with maintaining this illusion that numbers represent medical certainty?
Because while those numbers may spark the curiosity of some, the certainty imputed to them extinguishes it in many of us. Why should I be an active participant in my medical care and question my clinician’s approach, explore different treatment options, or maintain vigilance about medical errors, for example, if health care is as clean, scientific and exact as these numbers seem to imply? The reality is different and it can be frightening, especially when we are ill. Despite the growth in knowledge about health and disease, gaping holes remain; clinicians piece together bits of evidence and experience to formulate treatment plans. Often, there is no single right answer or solution.
Our challenge is to not be seduced by the false certainty of health-related numbers, but rather to see numbers as potentially valuable tools – but just tools, not guarantees — each of which may help shape our actions and those of our clinicians in our shared effort to make the best possible use of the services and technologies available to us so that we can live as well as we can for as long as we can.
My friend who wanted an estimate of the time remaining to him wasn’t looking for a promise that he wouldn’t die. He was interested in figuring out how to fit in all the life he could into those few days or, as it turned out, meaningful, bittersweet but pain-free weeks.