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Should parents go to jail for believing so devoutly in faith healing that they don't seek lifesaving medical treatment for their children?
Leilani and Dale Neumann of Wausau, Wis., will soon find out. Their 11-year-old daughter died of diabetic complications after they relied on prayer rather than doctors to heal her. Now they face trial for reckless endangerment and a potential prison sentence of 25 years. They're the third couple slapped with criminal charges in the last year for failing to seek treatment for a child. In today's New York Times, Dirk Johnson reports:
About 300 children have died in the United States in the last 25 years after medical care was withheld on religious grounds, said Rita Swan, executive director of Children's Health Care Is a Legal Duty ... Criminal codes in 30 states, including Wisconsin, provide some form of protection for practitioners of faith healing in cases of child neglect and other matters ...
Swan lost her own son after failing to seek prompt medical attention. She says she waited, catastrophically, because she thought "once we went to the doctor, we'd be cut off from God." The Neumanns seem to have been under the same impression. Johnson reports that they're "followers of an online faith outreach group" (on the Web here) that includes, among other things, an essay preaching that "Jesus never sent anyone to a doctor or a hospital. Jesus offered healing by one means only! Healing was by faith."
I don't know how the case will turn out. But the more important thing to communicate to parents is that this is bad religion. Science is a way of grappling with what we can know empirically. Religion is a way of grappling with what we can't. Each of these disciplines must recognize its limits and defer, beyond that, to its counterpart. Properly understood, there's nothing unscientific about religion, and there's nothing irreligious about science.
I'm not saying the distinction is perfectly clean. It isn't. Sometimes religion and science have to work together. But it's crucial to ask which kind of question you're facing. Healing is a physical phenomenon. Can faith influence it? Yes. Look at the latest study on acupuncture: It sometimes works, apparently because patients believe in it. But what happens when people pray for your recovery without you knowing about it? Answer: Nothing. Belief, not God, is the medically salient factor.
That's how science, at its best, works with religion. It doesn't claim to disprove God's existence. It can't. It addresses only empirically testable ideas, including faith healing. And it reports whatever its methods find. Instead of laughing at acupuncture, it looks at the evidence, admits that acupuncture sometimes works, and tries to figure out why.
Religion, at its best, needs the same humility. God isn't stupid. He doesn't give you a hammer and insist that you bang nails with your head. If this is his world, then so are the tools he has given you: doctors, medicine, and your brain. In the time of Jesus, most people died in childhood. Do you want to go back to that? Do you think that those deaths were God's will—but that today's long lives, made possible by modern medicine, aren't?
As medicine advances, difficult moral questions will arise. If failure to seek available treatment is reckless endangerment, what happens when the available treatment comes, for example, from destroying embryos to get stem cells? Can you be jailed for refusing to give your daughter treatment that's based on what you regard as killing? Or take embryo screening: Already, it has advanced to the point where parents who make babies the old-fashioned way, with all its risks, are seen as "inflicting" genetic maladies on their kids.
But taking your gravely ill child to the doctor isn't one of those tough calls. God doesn't hate doctors. He made them. Want to show your faith? Use what he gave you.
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Good front-page article in today's New York Times on Britain's National Institute for Health and Clinical Excellence (NICE), which, among other things, decides whether a few more months of your life are worth the expense. The article begins with a guy named Bruce Hardy who needs a drug that might give him an extra half-year of life but would cost $54,000. NICE said no. The agency comes off as heartless. "Everybody should be allowed to have as much life as they can," Hardy's wife pleads. The article concludes: "Meanwhile, Mr. Hardy waits. In recent weeks his growing tumor has pressed on a nerve that governs his voice. He can barely speak and is increasingly out of breath."
Aw, hell. It'd be great if we could buy an extra half-year for everybody. But we can't. We have unmet needs everywhere. People die every day from being uninsured and unattended. They just don't make the front page.
There's a cruel bias built into our minds that makes you feel more for the person who's suffering in front of you than for people whose suffering appears only in statistical form. (I can't remember what the psychologists or economists call this bias. If you do, please share it with the class.) So now you know all about Bruce Hardy, and you probably regard the bureaucrats at NICE as cads for stiffing him. It's harder to remind yourself of all the health and added life that $54,000 could buy for others. For example: Where does the Gates Foundation send its medical dollars for maximum efficiency? Childhood vaccines.
As far as I can tell, NICE is doing good work. Its refusal to pay any amount for life-prolonging drugs has forced drug companies to cut prices. And by drawing a line against paying too much in some tragic cases, NICE preserves money for other cases where the money can do more good. If anything, NICE is a bit soft. For instance, the Times reports: "After consulting a citizens group, the institute decided that the nation should spend the same amount saving or improving the life of a 75-year-old smoker as it would a 5-year-old." If I ran NICE, the 5-year-old would take priority. And I'm irked to see that NICE is already backing off from its rejection of cases such as Hardy's. According to the Times, this comes after NICE was "flooded with anguished comments." I'm sorry, but anguish is everywhere. If patients like Hardy get funded at $9,000 per month, which other patients won't be funded? What about their anguish? Or does your anguish count only if you have the means and know-how to lobby the government?
Yes, everybody deserves as much life as possible. But that means the person in front of you can't take an undue share of limited public funds when others are in need.
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You think the economy is bad? I have worse news: We're living longer.
Well, that's not exactly news. Steady increases in life expectancy have been a regular topic here at Human Nature. Now they're relevant for an awkward reason: The longer you live, the longer you have to stretch out your retirement savings. And right about now, your savings probably aren't looking like they're up to the job.
As the latest Reuters report notes, over the last four decades, U.S. life expectancy has climbed from 70.8 to 77.8 years. By 2015, it's on track to hit 79.2 years. Meanwhile, unlike other industrialized democracies, the United States has replaced pensions with 401(k) plans. So your retirement-income pie can suddenly shrink—as, for example, it's doing right now—and, at the same time, the longevity you've gained from all this lovely industrialization requires you to carve that pie into more and more annual pieces.
Financial planners have even coined a term for this paradox: longevity risk. The Reuters story features an 84-year-old retired nurse who now worries "about outliving her savings." A financial advice executive tells the wire service, "Probably half our clients are retired and yes, we have a lot of very worried, concerned clients. Their leading concerns are, No. 1, that they're going to run out of money."
So, the good news, in a way, has become bad news. And that's not the worst of it. The worst of it is that a lot of these old people who now expect to outlive their savings might decide to kill themselves before they run out of money. I wonder what the financial planners will call that.
(P.S. If you're on the main HN blog page and are looking for a link to add your own comment, just click the headline of the relevant item, and you'll get a page that has a "discuss" link.)
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When is a life-threatening disease not worth treating? When something else will kill you first.
This week, the U.S. Preventive Services Task Force issued new guidelines for prostate cancer screening. The New York Times explains:
Prostate cancer often progresses very slowly, and a large number of these cancers discovered through screening will probably never cause symptoms during the patient's lifetime ... Past task force guidelines noted there was no benefit to prostate cancer screening in men with less than 10 years left to live. ... The new guidelines take a more definitive stand, however, stating that the age of 75 is clearly the point at which screening is no longer appropriate.
Well, sort of. The new guidelines do draw the line at 75. But the rationale hasn't really changed. Here's the key paragraph from the report:
In men age 75 years or older, the USPSTF found no direct evidence of benefits of prostate cancer screening. However, the USPSTF was able to establish an upper bound for the potential magnitude of the benefit of treating screening-detected prostate cancer in this age group, by extrapolating from evidence of treatment for clinically detected prostate cancer in this age group. For a population of men with an average life expectancy of 10 years or fewer, the USPSTF determined that the benefits of prostate cancer screening and treatment would range from small to none.
In other words, men 75 years or older aren't worth screening because their life expectancy is 10 years or less. This matches the logic of the previous guidelines ("Older men ... who have a life expectancy of fewer than 10 years are unlikely to benefit") and, as the report notes, similar guidelines issued by professional medical associations. It also matches a study, cited in the key paragraph, that compared "radical prostatectomy" to "watchful waiting" in two groups of men. The study found that with prostate removal, "The absolute reduction in the risk of death after 10 years is small."
More to the point, the 75-10 equation matches current U.S. life expectancy tables. The guidelines clearly identify life expectancy as a key factor in setting limits to screening:
The USPSTF found convincing evidence that treatment for prostate cancer detected by screening causes moderate-to-substantial harms, such as erectile dysfunction, urinary incontinence, bowel dysfunction, and death. These harms are especially important because some men with prostate cancer who are treated would never have developed symptoms related to cancer during their lifetime.
According to the latest U.S. government data, remaining life expectancy for a 75-year-old man is 10.8 years. But that number applies only to the most recent year on the table, 2005. If you scan up the column of numbers, looking back in time, you'll see that remaining life expectancy for men at 75 has been edging up. Since 1980, it has increased by two years. And if you look at tables going further back, you'll see that a 75-year-old man today can expect as much remaining life as a 70-year old man could expect in 1975.
In other words, life expectancy is increasing, and as it does, the age at which slow diseases are worth testing and treating also increases. Three decades ago, by the logic of the 10-year limit, a 70-year-old man wasn't worth screening for prostate cancer. Today, he is. We have extended his remaining life to the point at which prostate cancer would shorten it. By preventing and treating other diseases, we have made this one worth preventing and treating, too.
So don't count on the screening line to hold at 75. Over the next few decades, it could easily rise to 80.
One way to look at this trend is that the job never ends. The more we accomplish, the more work we have to do. It's exhausting. Maybe we should back off and respect nature's limits.
The other perspective is that there's nothing more liberating -- nothing more human -- than shattering old expectations. This boring little tweak in the recommendations for prostate cancer is actually this week's episode of the biggest story in the universe: biological emancipation. In the beginning, we accept a cause of death as nature's course. Then we call it a disease and study it. Then we push life expectancy to the point at which the disease is worth treating. The truest measure of progress isn't what we achieve. It's what we undertake.
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Housekeeping note: If you haven't bookmarked the Human Nature home page, I recommend it. It always has the best and freshest news from around the Web in easy-to-click format. Everything I discuss here, plus the stuff I can't get to, is posted there first. So are links to all the latest Human Nature essays and blog items. If you don't have it bookmarked, and the Slate URL is too hard to remember, just type humannature.us.com.
Here's one story you'll find there and in this morning's news batch: U.S. surgeons have begun the long process of repairing a 15-year-old Filipino girl, Jingle Luis, whose feet are so clubbed that they've twisted upside down and backward. The AP story explains:
Jingle's case is more severe than those usually seen by doctors in industrialized countries. "Generally speaking, with modern technology, it doesn't get to this point," said Dr. Terry Amaral, a pediatric orthopedic surgeon who performed the surgery. ... Clubfoot is a relatively common deformity, occurring in about one in 1,000 births. Children are usually treated in infancy with casts or braces that gradually bring the feet into correct alignment. The condition becomes harder to treat if it is not corrected early on.
It sounds like Jingle wasn't treated as a baby because the Philippines lacked the necessary technology. But that's not what happened. Read further:
Amaral said Jingle's case was complicated by the fact that her clubfoot was associated with spina bifida. ... He said doctors who saw Jingle as a baby thought that her spina bifida would shorten her life span and prevent her from walking, so they did not treat the clubfoot. "They felt it wasn't worth managing because of the life expectancy, so they decided to leave it alone," Amaral said.
This is a major factor in treatment decisions around the world. Often, the problem isn't that doctors in less-developed countries can't fix you. It's that resources are limited and that in this context, life-expectancy projections come into play.
In Jingle's case, doctors misjudged the severity of her spina bifida. If she'd been born in the U.S., it's likely that her doctors would have recognized that the defect wasn't so bad. But it's also likely that they would have calculated her prospects differently altogether. That's because life expectancies differ significantly between rich and poor countries, and life expectancies for infants with significant health problems differ even more. Life expectancy isn't a purely biological calculation. It's a socioeconomic calculation.
The interplay of economic progress, life expectancy, and treatment decisions doesn't end in childhood, or with the case of one disabled girl. In fact, it's going to be one of the most powerful forces driving the world in this century and beyond. Thanks to economic and technological progress, life expectancies are rising around the world. Some of this is due to reductions in child mortality. But a lot of it, if not most, is due to increases in the length of old age. As we conquer diseases and improve public health, people in India, China, and elsewhere can expect to live many years longer. That, in turn, is transforming calculations about which conditions are worth treating. If the average woman in Shanghai is probably going to make it to 75 instead of 65, a disease that strikes her at 60 and would take five years to kill her becomes, in utilitarian terms, a disease worth treating.
What's happening, in short, is an increase not just in our technological ability, but in our moral expectations. It's a wonderful thing. But it's going to be incredibly expensive.