Sunshine Recorder

Our moral reactions are easily influenced by a variety of factors. One of them isanxiety. When people are confronted with disturbing experiences like mortality salience (i.e., being made aware of their own eventual death), they tend to affirm their moral beliefs. As a result, they feel inclined to punish moral transgression more harshly than they would without feeling fundamentally threatened. For example, in a now classical study people who objected to prostitution were asked to suggest a penalty for a woman arrested for prostitution. Participants who were led to reflect on their own mortality beforehand proposed a far higher bail than participants who thought about a less anxiety inducing topic. Such belief affirmation effects can also be evoked by psychologically disturbing experiences less severe than mortality salience. Hence, anxiety aroused by different situations can make our moral reactions more pronounced.

Some days ago, an interesting study has been published in “Psychological Science”. The authors showed that the common over-the-counter pain reliever paracetamol counteracts the belief-affirming effect of anxiety. Participants who took a placebo showed the familiar response pattern in the “prostitution paradigm”. They suggested a harsher penalty for the prostitute under mortality salience (a bail of around $450) compared to a control condition (around $300). Participants who took paracetamol, however, didn’t react on mortality salience. Independent of what they had reflected on before, they suggested the same penalty for the prostitute (around $300). Paracetamol seems to have reduced the fundamental anxiety participants felt due to the mortality salience manipulation, so they didn’t have to affirm their moral beliefs that strongly. In a second experiment, the same effect of paracetamol was shown using a different disturbing experience (a surrealistic movie instead of mortality salience) and a different measurement for belief affirmation (a fine for rioters instead of a bail for a prostitute).

Hence, besides killing physical pain, paracetamol seems to be capable of counteracting the effect anxiety has on our moral reactions. From a scientific perspective, this certainly is an interesting finding. But what can we make out of it from a practical ethics perspective? If we want a person’s moral reaction to be the result of cognition rather than emotion, paracetamol could be a means for bias reduction. However, some people might argue that in case a person’s moral belief is the “correct” one, wanting transgressions to be punished comparatively severely might not be such a bad thing, even if the motivation for that is anxiety. 

I work in a place of death. People come here to die, and my co-workers and I care for them as they make their journeys. Sometimes these transitions take years or months. Other times, they take weeks or some short days. I count the time in shifts, in scheduled state visits, in the sham monthly meetings I never attend, in the announcements of the “Employee of the Month” (code word for best ass-kisser of the month), in the yearly pay increment of 20 cents per hour, and in the number of times I get called into the Human Resources office.

The nursing home residents also have their own rhythms. Their time is tracked by scheduled hospital visits; by the times when loved ones drop by to share a meal, to announce the arrival of a new grandchild, or to wait anxiously at their bedsides for heart-wrenching moments to pass. Their time is measured by transitions from processed food to pureed food, textures that match their increasing susceptibility to dysphagia. Their transitions are also measured by the changes from underwear to pull-ups and then to diapers. Even more than the loss of mobility, the use of diapers is often the most dreaded adaptation. For many people, lack of control over urinary functions and timing is the definitive mark of the loss of independence.

Many of the elderly I have worked with are, at least initially, aware of the transitions and respond with a myriad of emotions from shame and anger to depression, anxiety, and fear. Theirs was the generation that survived the Great Depression and fought the last “good war.” Aging was an anti-climactic twist to the purported grandeur and tumultuousness of their mid-twentieth-century youth.

“I am afraid to die. I don’t know where I will go,” a resident named Lara says to me, fear dilating her eyes.

“Lara, you will go to heaven. You will be happy,” I reply, holding the spoonful of pureed spinach to her lips. “Tell me about your son, Tobias.”

And so Lara begins, the same story of Tobias, of his obedience and intelligence, which I have heard over and over again for the past year. The son whom she loves, whose teenage portrait stands by her bedside. The son who has never visited, but whose name and memory calm Lara.

Lara is always on the lookout, especially for Alba and Mary, the two women with severe dementia who sit on both sides of her in the dining room. To find out if Alba is enjoying her meal, she will look to my co-worker Saskia to ask, “Is she eating? If she doesn’t want to, don’t force her to eat. She will eat when she is hungry.” Alba, always cheerful, smiles. Does she understand? Or is she in her usual upbeat mood? “Lara, Alba’s fine. With you watching out for her, of course she’s OK!” We giggle. These are small moments to be cherished.

In the nursing home, such moments are precious because they are accidental moments.

The residents run on stolen time. Alind, like me, a certified nursing assistant (CNA), comments, “Some of these residents are already dead before they come here.”

By “dead,” he is not referring to the degenerative effects of dementia and Alzheimer’s disease but to the sense of hopelessness and loneliness that many of the residents feel, not just because of physical pain, not just because of old age, but as a result of the isolation, the abandonment by loved ones, the anger of being caged within the walls of this institution. This banishment is hardly the ending they toiled for during their industrious youth.

By death, Alind was also referring to the many times “I’m sorry,” is uttered in embarrassment and the tearful shrieks of shame that sometimes follow when they soil their clothes. This is the dying to which we, nursing home workers, bear witness every day; the death that the home is expected, somehow, to reverse.

So management tries, through bowling, through bingo and checkers, through Frank Sinatra sing-a-longs, to resurrect what has been lost to time, migration, the exigencies of the market, and the capriciousness of life. They substitute hot tea and cookies with strangers for the warmth of family and friends. Loved ones occupied by the same patterns of migration, work, ambition, ease their worries and guilt with pictures and reports of their relatives in these settings. We, the CNAs, shuffle in and out of these staged moments, to carry the residents off for toileting. The music playing in the building’s only bright and airy room is not for us, the immigrants, the lower hands, to plan for or share with the residents. Ours is a labor confined to the bathroom, to the involuntary, lower functions of the body. Instead of people of color in uniformed scrubs, white women with pretty clothes are paid more to care for the leisure-time activities of the old white people. The monotony and stress of our tasks are ours to bear alone.

The nursing home bosses freeze the occasional, carefully selected, picture-perfect moments on the front pages of their brochures, exclaiming that their facility, one of a group of Catholic homes is, indeed, a place where ”life is appreciated,” where “we care for the dignity of the human person.” In reality, they have not tried to make that possible. Under poor conditions, we have improvised for genuine human connection to exist. How we do that the bosses do not understand.

There is a simple reason health care in the United States costs more than it does anywhere else: The prices are higher.

That may sound obvious. But it is, in fact, key to understanding one of the most pressing problems facing our economy. In 2009, Americans spent $7,960 per person on health care. Our neighbors in Canada spent $4,808. The Germans spent $4,218. The French, $3,978. If we had the per-person costs of any of those countries, America’s deficits would vanish. Workers would have much more money in their pockets. Our economy would grow more quickly, as our exports would be more competitive.

There are many possible explanations for why Americans pay so much more. It could be that we’re sicker. Or that we go to the doctor more frequently. But health researchers have largely discarded these theories. As Gerard Anderson, Uwe Reinhardt, Peter Hussey and Varduhi Petrosyan put it in the title of their influential 2003 study on international health-care costs, “it’s the prices, stupid.”

As it’s difficult to get good data on prices, that paper blamed prices largely by eliminating the other possible culprits. They authors considered, for instance, the idea that Americans were simply using more health-care services, but on close inspection, found that Americans don’t see the doctor more often or stay longer in the hospital than residents of other countries. Quite the opposite, actually. We spend less time in the hospital than Germans and see the doctor less often than the Canadians.

“The United States spends more on health care than any of the other OECD countries spend, without providing more services than the other countries do,” they concluded. “This suggests that the difference in spending is mostly attributable to higher prices of goods and services.”

On Friday, the International Federation of Health Plans — a global insurance trade association that includes more than 100 insurers in 25 countries — released more direct evidence. It surveyed its members on the prices paid for 23 medical services and products in different countries, asking after everything from a routine doctor’s visit to a dose of Lipitor to coronary bypass surgery. And in 22 of 23 cases, Americans are paying higher prices than residents of other developed countries. Usually, we’re paying quite a bit more. The exception is cataract surgery, which appears to be costlier in Switzerland, though cheaper everywhere else.

Prices don’t explain all of the difference between America and other countries. But they do explain a big chunk of it. The question, of course, is why Americans pay such high prices — and why we haven’t done anything about it.

“Other countries negotiate very aggressively with the providers and set rates that are much lower than we do,” Anderson says. They do this in one of two ways. In countries such as Canada and Britain, prices are set by the government. In others, such as Germany and Japan, they’re set by providers and insurers sitting in a room and coming to an agreement, with the government stepping in to set prices if they fail.

Health care is an unusual product in that it is difficult, and sometimes impossible, for the customer to say “no.” In certain cases, the customer is passed out, or otherwise incapable of making decisions about her care, and the decisions are made by providers whose mandate is, correctly, to save lives rather than money.

In America, Medicare and Medicaid negotiate prices on behalf of their tens of millions of members and, not coincidentally, purchase care at a substantial markdown from the commercial average. But outside that, it’s a free-for-all. Providers largely charge what they can get away with, often offering different prices to different insurers, and an even higher price to the uninsured.

In other cases, there is more time for loved ones to consider costs, but little emotional space to do so — no one wants to think there was something more they could have done to save their parent or child. It is not like buying a television, where you can easily comparison shop and walk out of the store, and even forgo the purchase if it’s too expensive. And imagine what you would pay for a television if the salesmen at Best Buy knew that you couldn’t leave without making a purchase.

“In my view, health is a business in the United States in quite a different way than it is elsewhere,” says Tom Sackville, who served in Margaret Thatcher’s government and now directs the IFHP. “It’s very much something people make money out of. There isn’t too much embarrassment about that compared to Europe and elsewhere.”

The result is that, unlike in other countries, sellers of health-care services in America have considerable power to set prices, and so they set them quite high. Two of the five most profitable industries in the United States — the pharmaceuticals industry and the medical device industry — sell health care. With margins of almost 20 percent, they beat out even the financial sector for sheer profitability.

How the cure for scurvy, discovered in 1747, had been forgotten by the time of Scott’s expedition to the Antarctic in 1911.

Recently I have been re-reading one of my favorite books, The Worst Journey in the World, an account of Robert Falcon Scott’s 1911 expedition to the South Pole. I can’t do the book justice in a summary, other than recommend that you drop everything and read it, but there is one detail that particularly baffled me the first time through, and that I resolved to understand better once I could stand to put the book down long enough.

Writing about the first winter the men spent on the ice, Cherry-Garrard casually mentions an astonishing lecture on scurvy by one of the expedition’s doctors:

Atkinson inclined to Almroth Wright’s theory that scurvy is due to an acid intoxication of the blood caused by bacteria…
There was little scurvy in Nelson’s days; but the reason is not clear, since, according to modern research, lime-juice only helps to prevent it. We had, at Cape Evans, a salt of sodium to be used to alkalize the blood as an experiment, if necessity arose. Darkness, cold, and hard work are in Atkinson’s opinion important causes of scurvy.

Now, I had been taught in school that scurvy had been conquered in 1747, when the Scottish physician James Lind proved in one of the first controlled medical experiments that citrus fruits were an effective cure for the disease. From that point on, we were told, the Royal Navy had required a daily dose of lime juice to be mixed in with sailors’grog, and scurvy ceased to be a problem on long ocean voyages.

But here was a Royal Navy surgeon in 1911 apparently ignorant of what caused the disease, or how to cure it. Somehow a highly-trained group of scientists at the start of the 20th century knew less about scurvy than the average sea captain in Napoleonic times. Scott left a base abundantly stocked with fresh meat, fruits, apples, and lime juice, and headed out on the ice for five months with no protection against scurvy, all the while confident he was not at risk. What happened?

By all accounts scurvy is a horrible disease. Scott, who has reason to know, gives a succinct description:

The symptoms of scurvy do not necessarily occur in a regular order, but generally the first sign is an inflamed, swollen condition of the gums. The whitish pink tinge next the teeth is replaced by an angry red; as the disease gains ground the gums become more spongy and turn to a purplish colour, the teeth become loose and the gums sore. Spots appear on the legs, and pain is felt in old wounds and bruises; later, from a slight oedema, the legs, and then the arms, swell to a great size and become blackened behind the joints. After this the patient is soon incapacitated, and the last horrible stages of the disease set in, from which death is a merciful release.

One of the most striking features of the disease is the disproportion between its severity and the simplicity of the cure. Today we know that scurvy is due solely to a deficiency in vitamin C, a compound essential to metabolism that the human body must obtain from food. Scurvy is rapidly and completely cured by restoring vitamin C into the diet.

Except for the nature of vitamin C, eighteenth century physicians knew this too. But in the second half of the nineteenth century, the cure for scurvy was lost. The story of how this happened is a striking demonstration of the problem of induction, and how progress in one field of study can lead to unintended steps backward in another.

An unfortunate series of accidents conspired with advances in technology to discredit the cure for scurvy. What had been a simple dietary deficiency became a subtle and unpredictable disease that could strike without warning. Over the course of fifty years, scurvy would return to torment not just Polar explorers, but thousands of infants born into wealthy European and American homes.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen–that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this–that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

(Source: sunrec)

Tom was one of those people we all have in our lives — someone to go out to lunch with in a large group, but not someone I ever spent time with one-on-one. We had some classes together in college and even worked in the same cognitive psychology lab for a while. But I didn’t really know him. Even so, when I heard that he had brain cancer that would kill him in four months, it stopped me cold.

I was 19 when I first saw him — in a class taught by a famous neuropsychologist, Karl Pribram. I’d see Tom at the coffee house, the library, and around campus. He seemed perennially enthusiastic, and had an exaggerated way of moving that made him seem unusually focused. I found it uncomfortable to make eye contact with him, not because he seemed threatening, but because his gaze was so intense.

Once Tom and I were sitting next to each other when Pribram told the class about a colleague of his who had just died a few days earlier. Pribram paused to look out over the classroom and told us that his colleague had been one of the greatest neuropsychologists of all time. Pribram then lowered his head and stared at the floor for such a long time I thought he might have discovered something there. Without lifting his head, he told us that his colleague had been a close friend, and had telephoned a month earlier to say he had just been diagnosed with a brain tumor growing in his temporal lobe. The doctors said that he would gradually lose his memory — not his ability to form new memories, but his ability to retrieve old ones … in short, to understand who he was.

Tom’s hand shot up. To my amazement, he suggested that Pribram was overstating the connection between temporal-lobe memory and overall identity. Temporal lobe or not, you still like the same things, Tom argued — your sensory systems aren’t affected. If you’re patient and kind, or a jerk, he said, such personality traits aren’t governed by the temporal lobes.

Pribram was unruffled. Many of us don’t realize the connection between memory and self, he explained. Who you are is the sum total of all that you’ve experienced. Where you went to school, who your friends were, all the things you’ve done or — just as importantly — all the things you’ve always hoped to do. Whether you prefer chocolate ice cream or vanilla, action movies or comedies, is part of the story, but the ability to know those preferences through accumulated memory is what defines you as a person. This seemed right to me. I’m not just someone who likes chocolate ice cream, I’m someone who knows, who remembers that I like chocolate ice cream. And I remember my favorite places to eat it, and the people I’ve eaten it with.

Pribram walked up to the lectern and gripped it with both hands. When they had spoken last, his colleague seemed more sad than frightened. He was worried about the loss of self more than the loss of memory. He’d still have his intelligence, the doctors said, but no memories. “What good is one without the other?” his colleague had asked. That was the last time Pribram spoke to him.

From a friend, Pribram had learned that his colleague had decided to go to the Caribbean for a vacation with his wife. One day he just walked out into the ocean and never came back. He couldn’t swim; he must have gone out with the intention of not coming back — before the damage from the tumor could take hold, Pribram said.

The room was silent for 10 or 15 seconds — stone silent. I looked over at Tom’s notebook. “Neuropsychologist contemplates losing his mind,” Tom had written.

If he had lived, Pribram’s colleague would have experienced what neuroscientists call retrograde amnesia. This is the kind of amnesia that is most often dredged up as a plot element in bad comedies and cheap mystery stories; so-and-so gets hit on the head and then can’t remember who he is anymore, wanders around aimlessly, finding himself in zany predicaments, until he gets hit on the head again and his memory remarkably returns. This almost never occurs in real life. Although retrograde amnesia is real, it’s usually the result of a tumor, stroke, or other organic brain trauma. It isn’t restored by a knock on the head. Because they can still form new memories, patients with retrograde amnesia are acutely aware that they have a cognitive deficit, are painfully knowledgeable about what they are losing.

On December 10, Yosemite National Park began demolishing 91 tent cabins in Curry Village, a rustic encampment of 408 canvas-sided cabins jammed into a pine-and-cedar glade near the sloping shoulders of Half Dome. It was here that an outbreak of hantavirus began last summer, infecting at least 10 people and killing three.

But on Sunday, June 10, 2012, the campground seemed idyllic. That weekend held all the promise of early summer. The Curry Village swimming pool was open. The smell of hot dogs and nachos curled out of the snack bar. The sun bounced off the face of Glacier Point. Kids in “Go Climb a Rock” T-shirts shouted and chased each other on bikes.

Sometime that day, a 49-year-old woman from the Los Angeles area arrived at Curry Village’s front desk, a plain wood-floor office that’s often cacophonous with the sound of staffers checking guests in and out. A clerk handed her a key to one of the 91 “signature tent cabins” that opened three years ago—the “new 900s” as they were collectively known. Unlike the older cabins, which are sided with single-ply vinyl-coated canvas, the signature cabins boasted double-wall plywood construction and propane heaters, making them warmer and quieter than the older units.

Off she went, this Southern California lady, to enjoy her Yosemite vacation. We’ll call her Visitor One.

About the same time, another guest checked into Curry Village. He was a 36-year-old man from Alameda County, California, which encompasses Berkeley, Oakland, and the East Bay region. He was given the key to a cabin close to Visitor One’s. He dropped off his things and went about his business. We’ll call him Visitor Two.

We don’t know exactly how Visitors One and Two spent their four days in the park. Medical confidentiality laws forbid public-health officials from releasing their names, and they and their families have chosen to keep their stories private. Maybe they hiked to the top of Half Dome or enjoyed the giant sequoias of the Mariposa Grove. By the following Wednesday, June 13, both visitors had checked out of their Curry Village tent cabins and left the park.

Around Yosemite the summer unfolded quietly. The search-and-rescue team went out on minor events: an ankle fracture on the Panorama Trail, a fallen hiker on the Half Dome cable route. Rangers kept a wary eye on the Cascade Fire, a lightning-sparked wilderness blaze that smoldered through a red fir forest.

Then, in late June, Visitor One fell ill. She might have felt like she had the flu: chills, muscle aches, fever, headache, dizziness, fatigue. The flu goes away after a few days. This didn’t. We do know that, back home, she went to see her doctor. When presented with Visitor One’s symptoms, most physicians would have dismissed it as the flu or, at worse, low-level pneumonia. Her doctor didn’t. They talked about what she might have picked up and where. She mentioned her Yosemite trip. The doctor took the unusual step of calling Charles Mosher, a public-health officer for Mariposa County, which encompasses Yosemite, and asking if there were any known hantavirus cases in the area. “Based on her history and symptoms, [hantavirus] was a definite possibility,” Mosher recalled, so he and Visitor One’s doctor agreed that starting treatment for the virus while awaiting lab confirmation was the prudent way to go. 

That was, given the circumstance, about the worst thing Visitor One could hear.

…One of the most powerful stories to influence the discussion came not from our clinical practice, but from fiction: Leo Tolstoy’s novella The Death of Ivan Ilyich. This literary account of the final thoughts and experiences of a dying man prompted reflection about suffering and the power and limits of medicine.

Tolstoy’s Ivan Ilyich is a middle-aged prosecutor in 19th-century St Petersburg who spends increasing amounts of his time climbing the social ladder, to the detriment of his already poor relationships with his wife and children. He develops a protracted, painful condition, the diagnosis of which eludes his physicians. When the doctors and others around him ultimately realise the severity of his condition, they lie to him about its terminal nature. A spiritually empty man, Ivan Ilyich’s lingering demise forces him to confront the meaning of his inevitable death. Medicine offers no consolation and he rejects the help of his physician:

‘You know perfectly well you can do nothing to help me, so leave me alone.’
‘We can ease your suffering’, said the doctor.
‘You can’t even do that; leave me alone.’

Neither the administration of opium nor the ministrations of a priest can ultimately alleviate the suffering that comes from Ivan Ilyich’s realisation “What if my entire life, my entire conscious life, simply was not the real thing?” Although his physical pain is great, Tolstoy portrays Ilyich’s moral, mental, and existential pain as even greater.

In a diary entry from 1902—the year after his excommunication—Tolstoy wrote: “Peaceful deaths under the influence of the Church’s rites are like death under the influence of morphine.” We can assume this is not a complimentary statement. In the end, Tolstoy left Ivan Ilyich alone with his suffering. To the outside world he was in agony—“screaming desperately and flailing his arms”—even as he was coming to a fundamental understanding of his life and death. “For those present, his agony continued for another two hours”, the narrator tells us; yet within he seems to have eventually found a sense of peace.

Today, in the secular world of medicine, we are becoming ever more accepting of the notion that pain and suffering must be banished from the dying experience. Pain, indeed all suffering, is meaningless; it should be erased. “The RIGHT to be free of physical pain”; yet, the reality of its control is something very different. One study that changed perceptions of the care of dying patients was the 1995 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). In this study of death in five US teaching hospitals, family members were asked about the amount of pain patients had endured during the last 3 days of their lives. They reported that 50% of conscious patients who died in the hospital had moderate or severe pain at least half the time. This finding—alongside the results of the second phase of the trial that reported no improvement in pain control among patients in the intervention group—was surprising and distressing to many. Since the SUPPORT findings, health-care professionals have been admonished for poor pain control. For example, the Medical Board of California’s Guideline for Prescribing Controlled Substances for Intractable Pain, adopted in 1994 and updated in 2007, states that failure to adequately manage pain is “inappropriate prescribing”. So that although physicians’ fear of overprescribing has been one supposed reason for poor pain management in the past, now, physicians will be subject to sanctions for underprescribing as well.

Such guidelines, allied to improved public knowledge of the issue and the ever-increasing drug and surgical armamentarium available to physicians, has led to effective medical control of pain and other end-of-life symptoms. For the conscious, competent patient, this may well be a boon, because there is less reason for a patient to die with pain he or she wants alleviated. But, more generally, when a suffering-less death becomes the medical summum bonum, morphine and other drugs become our sacraments. This is not necessarily good. Pharmaceuticals are the wrong treatment for certain kinds of suffering. In his Diaries, Tolstoy tells of how his brother’s suffering after a stroke is so much more serious for his not accepting his plight. He writes: “In such a condition there are only two solutions: defiance, irritability and an increase of suffering, as with him, or, on the contrary: submission, gentleness and a decrease of suffering, even to the extent of eliminating it altogether.” Tolstoy’s observation is perhaps pertinent in some clinical contexts.

What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich’s inner experience? Would it be transformed? Would it go away?

Now, we recognise that we are suggesting something that is potentially dangerous, and we worry about it. Pain relief should never be withheld when it is desirable. Nor do we think that physical or existential suffering is, necessarily, redemptive or edifying in any way. But, it might be for some people; there might be someone for whom, as for Ivan Ilyich, the suffering of dying is a path to self-understanding or spiritual awakening. Should this be something that matters to the physician? Physicians and nurses need to be sensitive to the suffering of those they care for, but, does this mean a sensitivity to, or a sympathetic understanding of, more than just a patient’s physical pain and symptoms, important as those are? Although many people would prefer a painless, instant death—no suffering, just lights out, quickly, permanently—others would have some variation of what seems to be Tolstoy’s version of the good death: a conscious one, with acceptance of whatever comes. For example, the Zen teacher, Shunryu Suzuki, took opioids for his painful cancer for a while—to please his doctor, he said—then stopped because he wanted his mind clear.

Daniel Kish has been sightless since he was a year old. Yet he can mountain bike. And navigate the wilderness alone. And recognize a building as far away as 1,000 feet. How? The same way bats can see in the dark.

The first thing Daniel Kish does, when I pull up to his tidy gray bungalow in Long Beach, California, is make fun of my driving. “You’re going to leave it that far from the curb?” he asks. He’s standing on his stoop, a good 10 paces from my car. I glance behind me as I walk up to him. I am, indeed, parked about a foot and a half from the curb.

The second thing Kish does, in his living room a few minutes later, is remove his prosthetic eyeballs. He does this casually, like a person taking off a smudged pair of glasses. The prosthetics are thin convex shells, made of acrylic plastic, with light brown irises. A couple of times a day they need to be cleaned. “They get gummy,” he explains. Behind them is mostly scar tissue. He wipes them gently with a white cloth and places them back in.

Kish was born with an aggressive form of cancer called retinoblastoma, which attacks the retinas. To save his life, both of his eyes were removed by the time he was 13 months old. Since his infancy — Kish is now 44 — he has been adapting to his blindness in such remarkable ways that some people have wondered if he’s playing a grand practical joke. But Kish, I can confirm, is completely blind.

He knew my car was poorly parked because he produced a brief, sharp click with his tongue. The sound waves he created traveled at a speed of more than 1,000 feet per second, bounced off every object around him, and returned to his ears at the same rate, though vastly decreased in volume.

But not silent. Kish has trained himself to hear these slight echoes and to interpret their meaning. Standing on his front stoop, he could visualize, with an extraordinary degree of precision, the two pine trees on his front lawn, the curb at the edge of his street, and finally, a bit too far from that curb, my rental car. Kish has given a name to what he does — he calls it “FlashSonar” — but it’s more commonly known by its scientific term, echolocation.

Bats, of course, use echolocation. Beluga whales too. Dolphins. And Daniel Kish. He is so accomplished at echolocation that he’s able to pedal his mountain bike through streets heavy with traffic and on precipitous dirt trails. He climbs trees. He camps out, by himself, deep in the wilderness. He’s lived for weeks at a time in a tiny cabin a two-mile hike from the nearest road. He travels around the globe. He’s a skilled cook, an avid swimmer, a fluid dance partner. Essentially, though in a way that is unfamiliar to nearly any other human being, Kish can see.

This is not enough for him. Kish is seeking — despite a lack of support from every mainstream blind organization in America — nothing less than a profound reordering of the way the world views blind people, and the way blind people view the world. He’s tired of being told that the blind are best served by staying close to home, sticking only to memorized routes, and depending on the unreliable benevolence of the sighted to do anything beyond the most routine of tasks.

(Source: sunrec)

The Global Mail has an amazing story about how the last treks to find cases of kuru – a cannabalism-related brain disease – have been completed. 

Kuru was passed on by eating the brains of dead relatives – a long finished tradition of the Fore people in Papua New Guinea – and it infected new people through contact with prions. 

Prions are misfolded proteins that cause other proteins to take on the infectious misfolding. In the case of kuru it lead to shaking, paralysis, outbursts of laughing and a host of other neurological symptoms as the brain slowly degenerated. 

No-one knew prions existed or could exist before kuru. But as the article makes clear, this ‘obscure disease’ of a remote tribe revolutionised our understanding of proteins and how infections could take place. 

But the story is how it was discovered is more than just lab tests and the article is a brilliant retelling of the research. 

Michael Alpers has been working on the research project since the 60s and recalls some of the episodes:

After each death, he says, “I would go and talk to the family again, and say, ‘Okay?’. They had participated in cutting up bodies in the past — so that was not an unusual activity for them. We had to clear a few people — particularly the women who were wailing. But some of the women stayed. The ones involved put on masks to protect the tissue and I had gloves.

“The father, or a close relative, would hold the head, and I would take the top of the skull off with a bone handsaw. It would take maybe 20 minutes… like cutting an avocado. I would go to particular parts of the brain… take out small cubes. My assistant would hold out the bottle that was relevant, take the lid off, and I’d pop it in.

“Then I’d take the whole brain out and put it in a bucket full of formalin and cotton wool so it wouldn’t be deformed, and put the lid on. All our samples would go into an insulated box. Then I put the skull cap back on, and sewed up. Then we said goodbye… gave everyone a hug, and took off. I did this five times. It was enough.”

It’s a wonderfully written, informative piece. A long and compelling read.

One of the most famous stories of H. G. Wells, “The Country of the Blind” (1904), depicts a society, enclosed in an isolated valley amid forbidding mountains, in which a strange and persistent epidemic has rendered its members blind from birth. Their whole culture is reshaped around this difference: their notion of beauty depends on the feel rather than the look of a face; no windows adorn their houses; they work at night, when it is cool, and sleep during the day, when it is hot. A mountain climber named Nunez stumbles upon this community and hopes that he will rule over it: “In the Country of the Blind the One-Eyed Man is King,” he repeats to himself. Yet he comes to find that his ability to see is not an asset but a burden. The houses are pitch-black inside, and he loses fights to local warriors who possess extraordinary senses of touch and hearing. The blind live with no knowledge of the sense of sight, and no need for it. They consider Nunez’s eyes to be diseased, and mock his love for a beautiful woman whose face feels unattractive to them. When he finally fails to defeat them, exhausted and beaten, he gives himself up. They ask him if he still thinks he can see: “No,” he replies, “That was folly. The word means nothing — less than nothing!” They enslave him because of his apparently subhuman disability. But when they propose to remove his eyes to make him “normal,” he realizes the beauty of the mountains, the snow, the trees, the lines in the rocks, and the crispness of the sky — and he climbs a mountain, attempting to escape.

Wells’s eerie and unsettling story addresses how we understand differences that run deep into the mind and the brain. What one man thinks of as his heightened ability, another thinks of as a disability. This insight about the differences between ways of viewing the world runs back to the ancients: in Plato’s Phaedrus, Socrates discusses how insane people experience life, telling Phaedrus that madness is not “simply an evil.” Instead, “there is also a madness which is a divine gift, and the source of the chiefest blessings granted to men.” The insane, Socrates suggests, are granted a unique experience of the world, or perhaps even special access to its truths — seeing it in a prophetic or artistic way.

Today, some psychologists, journalists, and advocates explore and celebrate mental differences under the rubric of neurodiversity. The term encompasses those with Attention Deficit/Hyperactivity Disorder (ADHD), autism, schizophrenia, depression, dyslexia, and other disorders affecting the mind and brain. People living with these conditions have written books, founded websites, and started groups to explain and praise the personal worlds of those with different neurological “wiring.” The proponents of neurodiversity argue that there are positive aspects to having brains that function differently; many, therefore, prefer that we see these differences simply as differences rather than disorders. Why, they ask, should what makes them them need to be classified as a disability?

But other public figures, including many parents of affected children, focus on the difficulties and suffering brought on by these conditions. They warn of the dangers of normalizing mental disorders, potentially creating reluctance among parents to provide treatments to children — treatments that researchers are always seeking to improve. The National Institute of Mental Health, for example, has been doing extensive research on the physical and genetic causes of various mental conditions, with the aim of controlling or eliminating them.

Disagreements, then, abound. What does it mean to see and experience the world in a different way? What does it mean to be a “normal” human being? What does it mean to be abnormal, disordered, or sick? And what exactly would a cure for these disorders look like? 

David Quammen is probably best known for his writings about bizarre, beastly, or wildly eccentric animals, and the scientists who study them. His long-running column forOutside magazine, Natural Acts, read like a bestiary of the planet’s most intriguing creatures. And with books like his 1997 tome The Song of the Dodo and the 2004 Monster of God, he has sounded the alarm about the looming extinction crisis and the unraveling of the Earth’s ecosystems. Now he’s written another opus, this one about creatures so small that we can see them only with the aid of an electron microscope. It’s his most captivating — and, by far, his scariest — book yet.

Quammen says the inspiration for Spillover: Animal Infections and the Next Human Pandemic came while he was on a trans-African hike with biologist Michael Fay in 2000. Sitting around a campfire one night, some of their guides told stories about Ebola sweeping through their village. “It was hideous. It was scary. It was confusing. They didn’t know what it was,” Quammen says. “They didn’t know that it was a virus — they just knew that their friends and loved ones were dying.”

Then one of the men mentioned a peculiar thing. Around the time of the Ebola outbreak, he’d seen a pile of 13 dead gorillas in the forest nearby. That, says Quammen, was a moment. What Quammen knew, but his guides apparently did not, is that Ebola infects gorillas and chimpanzees as well as humans. The virus lived quietly in a “reservoir” host — an animal that carries the virus but is not sickened by it — until one day, it “spilled over,” crossing the species divide and wreaking havoc on humans and apes alike. That jump from one species to another is called zoonosis, and over the course of researching this book, Quammen would discover that it is a unsettlingly common occurrence.

If it sounds like the makings of a horror story, well, it is, but Quammen doesn’t do horror. He’s too brainy and flat-out curious for that. As with much of his previous work, this tale is told as a slowly unfolding mystery, in which we follow a far-flung constellation of scientists as they piece together a complex puzzle involving their subjects — in this case, viruses, and the wild animals that carry them. This quest has Quammen chasing all over the planet with researchers who investigate the mysterious deaths of Australian racehorses, catch chimpanzee piss as it rains from the treetops, and accomplish other outlandish feats.

The result is a page-turner that includes, among other things, the jaw-dropping tale of how the AIDS virus jumped from a chimpanzee to a human in the southeastern corner of Cameroon around 1908 and spread across the globe.

Quammen, a contributing writer at National Geographic, stopped by the Grist offices last week during a nationwide book tour.

I came away from this book somewhat amazed that we are not sicker.

Well, we’ve lost 30 million people to HIV in the last 30 years. And we lose a lot of people each year to influenza and to some of these other things. That makes us pretty sick. And we could be much sicker. We’re really moving into the next phase of exposing ourselves to these zoonotic diseases because we’re pressing more and more into the forests where all the biological diversity lives, and the more biological diversity you have the more viruses you have.

We often hear that tropical forests, these last wild places, are reservoirs for medicines, and sources of all these riches. This book turns that on its head and says, actually, they’re also potentially really dangerous.

They’re booby-trapped in a way. Because where you have high diversity of animal species and plant species, you also have high viral diversity. Virtually every species that you can investigate, you’re gonna find at least one unique form of virus. Every rat, every mouse, every butterfly, every lizard, you’re gonna find a unique virus. And if you go ripping in there and gobbling up all these things, you’re gonna gobble up some viruses. And many of them may be harmless in humans. Some of them won’t be.

Was the book, on some level, another call to protect those last wild places?

Well, yes. It’s a roundabout way of reminding people that, look, we don’t own this planet, we’re not here alone, we’re connected to all these other species. And disruption is natural, but certain kinds of disruption are more unnatural than others. And the kind that we’re causing has consequences. And disease is one of the consequences.

We’re pressing deeper into these last wild places, but at the same time, we’re becoming a more urban species. That has some consequences, too.

The more we live in high-density situations, the more open landscape is left. And there’s good sense in that. But high-density aggregations of any host species predispose that host species to rampages of infectious disease. So as we increase our density, as our big cities go from being cities of 8 million to cities of 15 million and 20 million people, we’re piling up a lot of fuel together in a place where — I’m changing metaphors now — the spark of an infectious microbe can make a bigger conflagration.

And we’re moving around more quickly. I don’t think I use the terms in the book, but as I’ve been talking about this I find myself talking more and more about the yin and yang of disruption and connectivity. The disruption is what exposes us to the viruses and the connectivity is what gives the viruses a better opportunity to burn through more individuals, to create more mayhem, to kill more people.

Talk to me a little about our abilities to fight off these diseases.

Most of these diseases that emerge from animals are viruses. And the nastiest of them and the most difficult of them are viruses. And the ones that evolve and adapt to new hosts most quickly are viruses. Antibiotics don’t work on viruses. Trying to treat a virus with an antibiotic is like trying to clean the dirt off your driveway using a flashlight instead of a garden hose. Doesn’t work. There are some antiviral drugs. We know about antiviral cocktails that are controlling the replication of HIV. They don’t kill it off, they just slow it down.

What are the chances that we’ll be able to wipe out some of these diseases, the way we did with smallpox, for example?

I talk a little bit in the book about the dream of eradication. Humans like to have final, complete solutions. We had that problem, now it’s fixed, it’s gone. We eradicated smallpox. We might eradicate polio. Why? Because they’re not zoonotic. They have nowhere to hide except in humans. If we cure, vaccinate, protect every human, then those viruses have nowhere else to go. Maybe they go into a test tube in a freezer somewhere in the CDC. But they’re not in the wild anymore.

With zoonotic viruses, it’s much, much more difficult, and that’s where we have to realize the imperfection of our solutions and the finitude of human power, even medical science. We shouldn’t expect to eradicate a lot of these things. We need to find ways to live with them, just the way we have gone a long way in finding ways to live with HIV. At least in this country, at least in places where people can afford drug cocktails, people are living a long time. Magic Johnson is still smiling. He was really lucky that he was that much younger than Rock Hudson. He came along late enough that when he got sick they were starting to have a handle on how to control it.

I don’t think of Rock Hudson and Magic Johnson as people in your pantheon.

Well, they’re part of the story. And I realize I’m dating myself. How many of your readers know who Rock Hudson is — was? You can Google Rock Hudson, people.

In the last section of the book, you arrive at the unavoidable question: Are we ourselves an outbreak, like a disease?

As I say in the book, outbreaks are an ecological phenomenon. They’re not unnatural in that sense. Certain kinds of species have a propensity for these huge rises followed by these crashes. And so what I call The Analogy essentially is a question that I have put to some of the experts, including the people who study outbreaks in tent caterpillars and forest Lepidoptera: Is it reasonable to think of us humans as an outbreak population? And generally they say yes.

There has never been any large-bodied vertebrate before us on this planet that was anywhere near as abundant. There have never been 7 billion apes of any species. There have never been 7 billion water buffalo or deer of any species. There has never been anything like what we are now. And in that sense we’re an outbreak population … and the thing about outbreaks is, they end.