Being minimally conscious

Dr. Joseph J. Fins writes about our habit of segregating patients who are minimally conscious from receiving meaningful rehabilitation, and the scandal that is our mis-diagnosis rate for patients like Terri Schiavo, wherein patients are classified as functionally brain-dead when in fact more than 40 percent are likely conscious:

Maggie was found to be in the “minimally conscious state” — a term medically formalized in 2002. Unlike vegetative patients, those in MCS areconscious. They demonstrate intention, attention and memory. They may reach for a cup, say their name and notice you when you walk into their room. The problem is that these actions may be rare and intermittent, so when family members who witnessed them share their observations with staff members, they are often attributed to a family’s wishful thinking.

This may be true in individual cases. But often it is just part and parcel of the biology of MCS. Indeed, at least one study indicated an alarming rate of misdiagnosis: it found that 41 percent of patients with traumatic brain injury who were in chronic care and thought to be in the vegetative state were in fact in MCS.

If not for the astute observations of her Boston neurologist, Maggie, too, would have been misdiagnosed in perpetuity. But instead, she was expressing herself one blink at a time. For a young woman who had been thought permanently unconscious, this was truly a heroic accomplishment. …

Maggie’s case — her “small life” — became very consequential when my colleagues at Weill Cornell Medicine published a paper last December in the journal Science Translational Medicine revealing what had happened within her brain following her injury. During the recovery of her ability to communicate, Maggie’s brain essentially rewired over a period of years.

Using magnetic resonance imaging, Daniel J. Thengone, a graduate student, and colleagues in the Laboratory of Cognitive Neuromodulation, led by Dr. Nicholas D. Schiff, were able to demonstrate a strengthening of structural and functional reconnections across the two hemispheres emanating from Broca’s area, the region in the frontal lobe responsible for speech. It showed, remarkably, that even a grievously injured brain could heal itself. It appeared to do so by a process bearing a strong resemblance to typical brain development. The ongoing reorganization of connections among neurons is a reprise of how the developing brain gets its start. …

Yet, access to care is strained for this population. Utilization reviewers, and insurance benefit companies will deny access to rehabilitation to many individuals when they leave the hospital because they are deemed not yet ready for rehabilitation. But when nearly half of those who could participate are misdiagnosed as vegetative when they are actually minimally conscious, this vulnerable group is further marginalized. Organizations like the American College of Rehabilitation Medicine have been calling for a comprehensive evaluation of patients after hospital discharge so that misdiagnosis can be prevented and those who might be helped can get the rehabilitation they need.

Even those lucky few who do get rehabilitation and are not shunted off to what is euphemistically called “custodial care” get too little time. Most rehab stays are six weeks or less. But if the brain recovers through a slow process similar to development, why do we provide — and only to those lucky enough to receive it — just a few hours of rehabilitation a week for six weeks? It would be akin to sending your third grader to school for half-days of classes for a month or two and telling them that they are now on their own. Now that we know that it takes years for the developing brain to learn and mature, a similar commitment to the recovering injured brain now seems indicated.

If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life. If there is a legal obligation to educate the developing brain, should there not be a correlative responsibility to those whose brain are in a process of redevelopment and recovery?

Dr. Fins’s entire op-ed is worth reading if you care about whats of medical care is provided to America’s most vulnerable patients.

Domestic militaries

Sen. Rand Paul writes on a practice that’s as problematic as civil asset forfeiture, which is the problem of creating military-style forces out of local law enforcement:

Speaking to the Fraternal Order of Police in Tennessee this morning, Attorney General Jeff Sessions formally announced that the Trump administration will restart giving surplus military weapons and equipment to state and local law enforcement.

That’s a mistake.

What kind of equipment are we talking about? Well, Haverhill, Mass., a town of fewer than 65,000, got a nearly 20-ton Mine-Resistant Ambush Protected vehicle. Keene, N.H., a town of fewer than 30,000, got an 8-ton armored BearCat. Over 10,000 bayonets have been handed out. Yes, bayonets.

Police work is unquestionably difficult — and often thankless. I have nothing but the utmost respect and admiration for those who put it all on the line to protect our communities, and I saw their bravery firsthand this summer when Capitol Police officers made all the difference during the attack on our congressional baseball-game practice.

To support our local police, we must first realize they aren’t soldiers. But today the line between the two is being eroded.

It’s no surprise you can find big government right at the heart of this problem. Washington has incentivized the militarization of local police precincts by using federal dollars to help municipal governments build what are essentially small armies — where police departments compete to acquire military gear.

Plus, over a third of the “surplus” equipment is new, so it’s disingenuous to portray it as banged-up old stuff lying around the garage.

When we couple militarizing law enforcement with the erosion of civil liberties and due process that allows the police to become judge and jury — national-security letters, no-knock searches, broad general warrants, pre-conviction asset forfeiture — we see the magnitude of the problem.

National Review’s John Fund has observed: “The proliferation of paramilitary federal SWAT teams inevitably brings abuses that have nothing to do with either drugs or terrorism. Many of the raids they conduct are against harmless, often innocent, Americans who typically are accused of nonviolent civil or administrative violations.”

Fund also notes: “By 2005, at least 80 percent of towns with a population between 25,000 and 50,000 people had their own SWAT team,” and that “the number of raids conducted by local police SWAT teams has gone from 3,000 a year in the 1980s to over 50,000 a year [in 2014].”

Given these developments, it’s natural for many Americans — especially minorities, given the racial disparities in policing — to feel like their government is targeting them. Anyone who thinks that race does not still, even if inadvertently, skew the application of criminal justice isn’t paying close enough attention. Our prisons are full of black and brown men and women who are serving inappropriately long and harsh sentences for nonviolent mistakes in their youth.

Our Justice Department should be leading the conversation on reforming the system, not setting it back further.

Americans must never sacrifice their liberty for an elusive and dangerous — or false — security. The militarization of our law enforcement is just another symptom of an overall problem that stems from an unprecedented expansion of government power — where we are repeatedly asked to make such “liberty for what we tell you is security” tradeoffs.

Ultimately, if we sacrifice the very nature of the institutions we have set up to enforce the law, what kind of law will we end up enforcing?

It has been our tradition that the U.S. military cannot be deployed domestically, but if we continue going down this path I think it’s inevitable that it eventually will be, either in fact or in essence through police officers who are indistinguishable from our armed forces. None of this is compatible with the idea of liberty.

Men without work

Brian Rottkamp writes on Nicholas Eberstadt’s latest book “Men Without Work: America’s Invisible Crisis”:

For centuries, philosophers, theologians, and social scientists have contemplated the distinction between leisure (the basis of culture as per Josef Pieper) and idleness as defined by the cardinal sin of acedia. Modernity tends to blur the difference between spending time in a way that elevates the individual and society and a way which is unproductive and/or harmful. By utilizing various research conducted by the Census Bureau and the Bureau of Labor statistics annual American Time Use survey, Eberstadt is able to show how prime-age men not in the labor force (NILF), unemployed men, employed men, and employed women spend their time. What comes to fore is that prime-age NILF men with their free-time dividend of over 2000 hours/year spend no more time assisting with household care than employed women and less time than unemployed men. Out of the four groups, these men spend the least amount of time in religious and volunteer activities—despite the much greater amount of free time they possess. Instead, this time is spent engaging in “personal care” which includes sleeping and grooming, and most notably, a huge amount of time spent in “socializing, relaxing, and leisure.” Especially telling is the fact that prime-age NILF men watch nearly five-and-a-half hours of television and movies each day which far surpasses all of the other sub-categories and is a full two hours per day more than unemployed men. Seeing as NILF men are much more likely to use illicit drugs and visit gambling establishments, while less likely to attend religious services, read the newspaper, or vote in a presidential election, the parallel of entertainment media to the soma of Aldous Huxley’s Brave New World is unavoidable and deeply troubling. It is a crisis for the individual, the family, and society at-large.

The macroeconomic changes which can be deemed responsible for this male flight from work in the United States are varied. Increasingly, the influence of innovation, automation, and globalization is seen causing a fundamental shift in the nature of work. The large-scale incarceration of men—especially black men following the “war on crime”—unquestionably plays a major role, given not only the time each prisoner spends in jail but also the scarlet letter of a previous conviction that marks him when attempting to re-enter the labor market. Interestingly, Eberstadt also references a rapid increase in disability and social welfare claims which is perceived as inhibiting gainful employment. As Eberstadt makes clear, his intent is to create awareness of this crisis and open the discussion rather than providing all of the possible solutions. Without question, this book and the subsequent surprise victory of Donald Trump in the U.S. presidential election has led to an increased awareness of the plight of these “forgotten men.” The social reformers of Riis’ era clearly understood the effect that housing had on the individual and the family. One can only hope that we can be as wise to value the many benefits that work provides for men and society and develop the economy accordingly. The tenements are long gone but the challenge to develop virtue and character remains.

Nicholas Eberstadt writes: “Today’s received wisdom holds that the United States is now at or near “full employment.” An alternative view would hold that, by not-so-distant historic standards, the nation today is short of full employment by nearly 10 million male workers (to say nothing of the additional current “jobs deficit” for women). Unlike the dead soldiers in Roman antiquity, our decimated men still live and walk among us, though in an existence without productive economic purpose. We might say those many millions of men without work constitute a sort of invisible army, ghost soldiers lost in an overlooked, modern-day depression.”

Like J.D. Vance’s “Hillbilly Elegy,” Eberstadt speaks to a serious issue that’s seriously under-addressed…

Free societies require pluralism

James Damore, a Google engineer, was fired after a ten page memo he wrote on corporate culture went viral within the company, and then in public. He reflects on his firing:

… I committed heresy against the Google creed by stating that not all disparities between men and women that we see in the world are the result of discriminatory treatment. When I first circulated the document about a month ago to our diversity groups and individuals at Google, there was no outcry or charge of misogyny. I engaged in reasoned discussion with some of my peers on these issues, but mostly I was ignored.

Everything changed when the document went viral within the company and wider tech world. Those most zealously committed to the diversity creed—that all differences in outcome are due to differential treatment and all people are inherently the same—could not let this public offense go unpunished. They sent angry emails to Google’s human-resources department and everyone up my management chain, demanding censorship, retaliation, and atonement.

Upper management tried to placate this surge of outrage by shaming me and misrepresenting my document, but they couldn’t really do otherwise: The mob would have set upon anyone who openly agreed with me or even tolerated my views. When the whole episode finally became a giant media controversy, thanks to external leaks, Google had to solve the problem caused by my supposedly sexist, anti-diversity manifesto, and the whole company came under heated and sometimes threatening scrutiny.

It saddens me to leave Google and to see the company silence open and honest discussion. If Google continues to ignore the very real issues raised by its diversity policies and corporate culture, it will be walking blind into the future—unable to meet the needs of its remarkable employees and sure to disappoint its billions of users.

What did Damore write? Read “Google’s Ideological Echo Chamber” to understand for yourself. Conor Friedersdorf’s “A Question for Google’s CEO” is worth reading. So is Erick Erickson’s perspective. Excerpting/re-ordering some of Damore’s TL/DR here:

At Google, we talk so much about unconscious bias as it applies to race and gender, but we rarely discuss our moral biases. … People generally have good intentions, but we all have biases which are invisible to us. Thankfully, open and honest discussion with those who disagree can highlight our blind spots and help us grow, which is why I wrote this document. …

  • Google’s political bias has equated the freedom from offense with psychological safety, but shaming into silence is the antithesis of psychological safety.
  • This silencing has created an ideological echo chamber where some ideas are too sacred to be honestly discussed.
  • The lack of discussion fosters the most extreme and authoritarian elements of this ideology.
    • Extreme: all disparities in representation are due to oppression
    • Authoritarian: we should discriminate to correct for this oppression
  • Differences in distributions of traits between men and women may in part explain why we don’t have 50% representation of women in tech and leadership.
  • Discrimination to reach equal representation is unfair, divisive, and bad for business.

… I strongly believe in gender and racial diversity, and I think we should strive for more.

I’m mentioning and excerpting all of this primarily in order to look back on it in the years to come as a way to understand whether what Damore believes will come to pass, and whether Google will achieve an equal gender balance in its workforce.

Damore suggests that advocates of diversity now define that as meaning that “all differences in outcome are due to differential treatment and all people are inherently the same.” I haven’t heard it defined this way before. If it’s an accurate definition, it would explain why so many people naturally react against what “diversity” has come to mean in practice which isn’t the old “achieving a pluralistic society wherein many different peoples and ideologies coexist peacefully” but is something closer to a “diversity of universal sameness.”

I believe in tolerance and pluralism, and I’m basically egalitarian at heart. But I don’t believe that “all differences in outcome” are due to differential treatment. I believe that all people are created equal and possess inherent human dignity. But I don’t believe that “all people are inherently the same” in the sense that age, race, gender, sexuality, and religious conviction, et al are simply social/artificial/meaningless constructs.

Isn’t the reason that tolerance and pluralism and diversity are worth embracing in the first place because they recognize that people are inherently complex and characterized by fundamental difference? Despite our differences, we can still be “one people.” E pluribus unum.

Christ’s burial cloth

Ross Douthat was tweeting about the Shroud of Turin the other day, and that pointed me to this piece from Fr. Dwight Longenecker on various evidence for the authenticity of the shroud as Jesus Christ’s true burial cloth:

A verse in the epistle to the Hebrews asserts that faith is “the substance of things hoped for – the evidence of things not seen.” The resurrection of Jesus Christ is an event forever hoped for, but it is also an event unseen.

Believers in the Shroud of Turin, however, insist that the Shroud is the substance of this hope and the evidence of this unseen event. It is, they believe, the burial cloth of Jesus Christ. It has been venerated as such for centuries, and since the 17th century, when it came to Turin, has been the cathedral’s best-known treasures. Popes have come to gaze on the Shroud; Benedict XVI said when he visited in 2010 that “we see, as in a mirror, our suffering in the suffering of Christ”. …

We are not obliged to believe in the Shroud; it is undeniably mysterious. Having said that, it is also mysterious how dismissive most sceptics are. They cry out for scientific evidence, but when evidence is produced few really examine it closely. They simply shrug and say, “Well, we just don’t know. Nothing has been proven. All we have is an old cloth for which there is no explanation as yet.”

One of the principles of creative scepticism is that the obvious answer is usually the right one. The obvious answer, to my mind, is that the Shroud of Turin is the burial cloth of Jesus Christ.

I believe the Shroud is authentic, but if sceptics come up with a convincing answer to the questions the Shroud presents I am open-minded. My faith is rooted in the Resurrection, not the Shroud itself. The fact that the Shroud remains a mystery is a reminder of that other verse from the New Testament that “we walk by faith and not by sight.”

Fr. Longenecker cites the shroud’s more convicting/perplexing aspects. The image isn’t stained or painted, but seared into the cloth. The image can be read by 3D imaging tech, which is unusual. The image’s wounds are consistent not only with crucifixtion, but with the specifics of the details of Christ’s crucixition, and the bloodstains are human blood whose lasting hue indicates torture. The shroud carries pollen from near Jerusalem, and is consistent with first-century Jewish burial customs. The cloth itself is consistent from that period, too.

Douthat’s position is basically mine; paraphrasing/combining from Twitter: “I’m skeptical of the Shroud because as evidence of the resurrection it seems almost too dispositive to be real. It would be a tricky God who left behind hard evidence of the resurrection that only the scientists of 2000 years hence would recognize. He’s not a tame God, as Lewis says, so He can do as He likes. And it’s certainly one of the strangest objects in the world. If I were a skeptic its strangeness would unsettle me. But as a believer its directness seems unlikely.”

He later shared a memory from his last encounter with Christopher Hitchens, infamously atheistic: “Suppose Jesus did rise from the dead—what would that prove, anyway?”

Whether the Turin shroud is really Jesus’s burial cloth, Christians know Christ lived, died, was buried, and rose again. How difficult it is to believe in Christ—whether you’re Thomas who should have recognized him, or a Thomas living 2,000 or 10,000 years later in chronological time—is a testament to our basic inability to easily answer the question, “What is truth?”

Charlie Gard

Charles C. Camosy writes on what we might learn from the recent case of Charlie Gard, a little boy whose parents were denied the right to care for him despite being emotionally, financially, and medically supported in wanting to try an experimental treatment for their son’s rare condition. Instead, British courts mandated that little 11-month old Charlie should die by removal of his ventilator for subjective judgments about the nature of his life as a disabled boy. Bobby Schindler visited with Charlie and his heroic parents, Chris Gard and Connie Yates, last month, so this case is particularly close to the Terri Schiavo Life & Hope Network and to me:

Why did so many argue that Charlie’s doctors were the proper authorities for deciding whether or not he merited medical treatment? By dint of their profession, physicians still possess a generalized authority and social credibility. Polling shows that Americans trust members of the medical sciences to act in the public interest more than they trust religious leaders, elected officials, or business leaders.

But even when the condition is well studied, physicians regularly make serious mistakes. Indeed, the third-leading cause of death in the United States is medical error. Art Estopinan—who has a four-year-old son with a disease similar to Charlie’s—has helped inform judgments about the Charlie Gard case by relating the poignant story of physicians telling him to take his boy home because he had two months to live. Charlie’s physicians claimed that they were much more certain about Charlie’s case, but the point made by Estopinan (and Bambino hospital) stands. When physicians know so little about these ultra-rare diseases, it is reasonable for parents to be skeptical of sweeping judgements.

But for the sake of argument, let us assume that Charlie’s doctors got all the medical data correct and made a perfect prognosis. What moral conclusions follow from their findings? None.

Nothing moral follows from medical facts. Judgments about whether or not treatment is worth pursuing will have to be made. And physicians, even with perfect medical knowledge, are not the best persons to make them.

It is not only that physicians rarely have serious training in ethics. Like all of us, they have certain biases which come from their social location. They are better educated than the average patient, wealthier, possessed of greater freedoms and opportunities. Their privileged status often causes them to underrate the value of the lives of less fortunate people. Studies have found that physicians are profoundly ableist in judging the quality of life of their patients; they often discount the worth of the disabled.

It was the ethical judgments of Charlie’s physicians that kept Charlie from getting treatment when there was a reasonable chance it could benefit him. Charlie does not belong to his physicians. He belongs to his parents. And they to him.

Charlie Gard is a child of God who now sees that God face-to-face. That is his eternal legacy. But his temporal legacy may well be forcing Western medicine to face two disturbing trends: a return to “physician knows best,” coupled with a slouch toward euthanasia on the basis of disability.

Charles makes a point here that I made last week at the Napa Institute, which is basically this: physicians and medical experts carry legitimate authority based on their stature as bearers of important and specialized knowledge, and about objective medical realities—but too often that authority is cited as the basis for imposing subjective treatment decisions. That was certainly the case with Charlie Gard, and it’s the case for many patients and families in America who find out too late that their physician, or an institution’s ethics committee, can make a unilateral and life-ending decision without the consent of the person allegedly being cared for.

Better policies for mothers

Kristen Day of Democrats for Life writes:

Democrats who oppose abortion aren’t like Republicans who oppose abortion. Not only are their priorities different, so are their policies. While Republicans who oppose abortion usually aim simply at banning the practice or making it difficult, Democrats who oppose abortion tend to take a whole-life approach, and to focus especially on reducing incentives to have abortions, rather than creating penalties.

… Democrats who oppose abortion are keenly aware of how many abortions are the result of financial stress and economic pressures, and we advocate constantly to reduce those burdens.

Signed into law along with the Affordable Care Act were several legislation proposals crafted by Democrats for Life of America called the Pregnant Women Support Act. We intended our proposals to reduce abortion by getting rid of many of the forces that push women toward abortion in the first place. We moved to eliminate pregnancy as a pre-existing condition for insurers, require State Child Health Insurance programs to cover mothers, fully and federally fund WIC and provide federal funding for day care. Likewise, when Senate Republicans moved last year to institute a 20-week ban on abortion, we at Democrats for Life of America urged legislators to include a paid family leave package along with the bill, with the aim of reducing financial burdens on pregnant women and their families. And in 2012, antiabortion Sen. Bob Casey (D-Pa.) introduced the Pregnant Workers Fairness Act, a law that would ensure that pregnant women receive reasonable adjustments on the job and that they don’t face retribution for asking to be accommodated.

… If supporting pregnant women with government programs and employment protections isn’t enough proof of antiabortion Democrats’ commitment to women’s health, safety and liberty, antiabortion Democrats have also argued for higher minimum wages and for expanding services available to pregnant victims of domestic violence, stalking and other forms of abuse. Democrats who oppose abortion want to stop abortion, but that doesn’t entail a wholesale stripping away of women’s autonomy, as the policies outlined above indicate. And it certainly doesn’t imply a disregard for women’s lives.

The abortion debate is polarized and often extremely bitter. It’s easy to imagine that there really are only two sides: yours and the other guy’s. But Americans’ views on abortion are mostly in the gray area between always legal and never legal, and each person’s moral perspective will be nuanced by his or her own values and experiences. When Luján says that Democratic candidates who run for office in districts with strong antiabortion leanings deserve funding from the party, he isn’t saying that the party is going to fund candidates whose positions are tantamount to those of Republicans. He’s rightly observing that Democrats — real, bona-fide Democrats — do have a range of views on abortion, and to win as many elections as possible, the party has to recognize that.

I joined Democrats for Life because Kristen Day seems like one of the few people who want to create a real spectrum of choice.