PBS’s “This Emotional Life”: Medicine By the Numbers

Lewis Carroll wrote: “If you want to inspire confidence, give plenty of statistics. It does not matter that they should be accurate, or even intelligible, as long as there is enough of them.”

When people are first told that a loved one is in the hospital, they want answers. Straight answers. And they want them fast.

But oftentimes in today’s medical centers, what patients and family members alike are met with is numbers: Hypotheticals, probabilities and percentages. When combined with complex medical jargon, this can quickly lead to confusion and uncertainty, as those involved must make sense of the stats before they can understand the state of the patient’s condition. Without the proper frame of reference, this type of information can quickly exacerbate fears and increase emotional distress. Rather than serve as beacons to shed light on a patient’s chances, these figures quickly become barriers to the truth. For many of us, the numbers are to be feared, not followed.

Still, whether we like it or not, playing the percentages is a medical necessity. In the modern age, health care is all about the bottom line. As technology advances and life expectancy increases, today’s treatment options become more and more focused on the probabilities of success or failure. From prenatal care to geriatric services, every patient ultimately wants to know one thing: “Where do I stand?” More and more, the answer is delivered as a number, culled from experience, testing, and appropriate clinical research trials. This often leaves the physician to mediate between patient and procedure, as he or she attempts to present new information in such a way that those involved can both understand and take comfort from that most dispassionate of messengers, the statistic.

The numbers themselves are not to be blamed. At the risk of making modern health care sound like a sports bar in Las Vegas, the purpose of statistics in a medical environment is to give the facts about a patient’s condition in black and white, which, if not done humanely, can seem lacking in compassion. The key to recognizing the value of such numbers is to use them as guidelines, not ultimatums.

Properly used, statistics perform a dual function: When correctly interpreted and explained, these numbers can act as a security blanket, breaking down frightening uncertainties into hard facts in which patients can wrap themselves during a time of emotional upheaval, while also providing a solid understanding of treatment options and outlooks. From a doctor’s perspective, they stand as a buffer, protecting the physician from being forced into the unrealistic role of savior, no matter what the condition. In their way, percentages help to reinforce the idea that nature, and not the doctor, will ultimately make the final call as to a patient’s future. Such impartiality goes a long way toward strengthening the doctor-patient relationship, especially when the prognosis is not as good as a patient might have expected.

Numbers can be persuasive to those patients faced with making important yet difficult lifestyle changes or deciding upon end-of-life treatments. For patients diagnosed with serious illnesses and their families, much of today’s medical data provides hope. For example, according to the information available at the end of 2009, life expectancy in the United States reached an all-time high in 2007 — 77.9 years (75.3 years for men and 80.4 years for women). Between 2006 and 2007, rates dropped for nearly half of the leading causes of death in the United States (cancer, heart disease, stroke, hypertension, accidents, diabetes, homicides and pneumonia), reaching a new low of about 0.76 percent of the population (760.3 deaths per 100,000 people). That is approximately one half the rate from 1947. Once fatal illnesses are slowly being reclassified, provided the patient heeds the warnings found among the numbers and takes the appropriate steps to live in a healthier manner.

On the other end of life’s spectrum, many newly pregnant couples become surprisingly imaginative upon first hearing their good news and spend much time contemplating the worst. To calm the parents’ nerves (and to protect the doctor’s interests), it is now standard practice to administer a series of tests to assess the baby’s health throughout development. Then end result of most of these tests comes back in numbers. Statistics again.

Without debating the ethics and morality of abortion, which is not a doctor’s role, many of these tests seek to ascertain the health of the fetus and predict the odds of certain birth defects such as Down syndrome, trisomy 18, or trisomy 13. The number of things for a pregnant couple to worry about can be staggering, yet doctors are often obligated to advise them of the chances in advance. For example, in North America, 1 in 260 females carry the chromosome for Fragile X (also known as “Martin-Bell”) syndrome, a genetic disorder that results in an array of physical and mental limitations, ranging from severe to mild in manifestation. Likewise, 1 in 149 Ashkenazi Jewish individuals carry the gene for Nemaline Myopathy, a neuromuscular disorder that causes muscle weakness of varying severity. In its most potent form, Nemaline Myopathy results in death after just a few years. By incorporating these tests with such relevant factors as the age and overall health of the mother and the genetic background of each parent, doctors can provide a statistical model on which to gauge the probability of the baby’s being born to normal health. This can provide parents with peace of mind if the chances of defects are low, or the opportunity to prepare themselves or consider their options if the outlook is not favorable.

At least one reason behind the surge in statistical diagnosis is the continued rise in medical malpractice claims. Having been forced into the role of omniscient healer as a result of advances in diagnostic testing, doctors must now use this same technology to cover themselves in the event of a statistical improbability. A recent study by the American Medical Association concluded that “defensive medicine” (defined as medicine relying upon diagnostic and other therapeutic measures to safeguard against malpractice claims first, and the health of the patient second) increase health care costs by as much as $150 billion each year. To be sure, throwing the title of statistician into a doctor’s medical bag of magic tricks does not help to further the doctor-patient relationship.

There is no numeric substitute for direct and clear communication between a doctor and patient. That said, making sense of medical statistics can go a long way in helping a patient understand diagnosis, prognosis and treatment. If you or a loved one has been diagnosed with a potentially life-threatening illness, your decisions about treatment can often be linked to “quality of life” concerns. No matter what age, patients want answers to certain questions, often combined with supporting statistics, such as:

• How will this disease affect my life on a day-to-day basis
• Is this disease terminal, or if left untreated, will it become terminal?
• How will the treatment affect my life on a day-to-day basis?
• How will the disease, treated and/or untreated, alter my life expectancy compared to my anticipated decline in health as I age?

It is important to remember that statistics are numbers, plain and simple. While numbers may not lie, they have no bedside manner and can be interpreted in a variety of methods and made to suit many arguments. The best way to know where you or your loved one stands is to discuss your situation clearly and openly with your doctor, taking into consideration the big picture as well as the percentages.

This Emotional Life is a two-year campaign to foster awareness, connections and solutions around emotional wellness. Join our community at www.pbs.org/thisemotionallife.