Helping Make the Best of the End of Life

Bettie Lewis was dying of metastatic cancer. Like many people coming to the end of life, she harbored two great fears: uncontrolled pain and abandonment. Though she was not completely comfortable, her pain was well controlled and causing her little distress. She had also developed confidence that her family and the team caring for her would remain with her to the end. She would not die alone. Yet she was deeply anxious that she would not survive long enough to see her soon-to-be-born grandson.

Fortunately she had sought care at a hospital with an outstanding palliative care program, including a team of nurses and nurse practitioners, physicians, social workers, chaplains, and volunteers who make it their mission to ensure the best possible care for patients and families facing life-ending illnesses. Though medicine had been unable to provide Lewis a cure, her healthcare team had not forgotten its core mission, which is to care.

Unsurprisingly, palliative care does not generate large amounts of revenue, nor is it the sort of service that many hospitals choose to advertise. But it when it is done well, it can make a huge difference. Over one million Americans die every year, and in many parts of the country, over three-quarters die in a hospital or long-term care facility. While many say it might be better to die at home, for a majority, this simply is not what happens.

Palliative care enhances understanding, reduces suffering, and helps patients, families, and the healthcare team clarify goals. Because the focus is not on making the disease go away, it is possible to focus attention on living with it as well as possible. This bears repeating: the goal is not just to die well but to live well. Members of the team can talk openly with patients and families about what is happening and what lies ahead, helping them navigate these uncharted waters.

Without such expertise and commitment, some in healthcare can get dying very wrong. We can fail to ensure that patients and families understand the terminal nature of the situation. We can fail to relieve suffering, including pain, nausea, respiratory distress, and unrecognized depression. And we can fail to address conflicts over the goals of care – sometimes some family members push for comfort while others cling tightly to cure.

Patients, families, and health professionals all intend to do the right thing. We genuinely want to care for the gravely ill and do what we can to make their experience as comfortable and meaningful as possible. Many of us simply don’t know how to do it. What should we do? What should we say? What should we avoid saying and doing? Left alone in a state of denial, many of us might cloak the whole experience in fear and embarrassment. But given the right support and guidance, we can shine.

by Richard Gunderman and Peg Nelson, The Atlantic |  Read more:

Image: garryknight/flickr

The Wastefulness of Automation

Chris Dillow observes that "one function of the welfare state is to ensure that capital gets a big supply of labour, by making eligibity for unemployment benefit conditional upon seeking work." And despite noting that when jobs are scarce, paying some to "lie fallow" so others can work might be a good thing, he concludes that "this is certainly not in the interests of capitalists, who want a large labour supply - a desire which is buttressed by the morality of reciprocal altruism and the work ethic." (emphasis mine). Basic Income, therefore, is not going to happen because capitalist interests, claiming the moral high ground, will ensure that it never gains political traction.

But what if capitalists DON'T want a large labour supply? What if automation means that what capitalists really want is a very small, highly skilled workforce to control the robots that do all the work? What if paying people enough to live on simply is not cost-effective compared to the running costs of robots? In short, what if the costs of automated production fall to virtually zero?

I don't think I am dreaming this. I've noted previously that forcing down labour costs is one of the ways in which firms avoid the up-front costs of automation. But as automation becomes cheaper, and the efficiency gains from automation become larger, we may reach a situation where employing the majority of people at wages on which they can afford to live simply is not worthwhile. Robots can produce far more for far less.

This creates an interesting problem. The efficiency gains from automating production tend to create an abundance of products, which forces down prices. This sounds like a good thing: if goods and services are cheap and abundant, people can have whatever they want, can't they? Well, not if they are unemployed and have no unearned income. It is all too easy to foresee a nightmare future in which people who have been supplanted by robots scratch out a living from subsistence farming on motorway verges (all other land being farmed by robots), while lorries carrying products they cannot afford to buy flash past on the way to the stores that only those lucky enough to have jobs frequent.

But it wouldn't actually be like that. If only a small number of people can afford to buy the products produced by all these robots, then unless there is a vibrant export market for those products - which requires the majority of people in other countries to be doing rather better than merely surviving on a basic subsistence income - producers have a real problem. They would normally expect increasing efficiencies of production to push up profits, either because demand for products would be sufficient to maintain prices while production costs are falling, or because lower production costs feeding through into lower prices gave them a competitive advantage. But the efficiencies of production created by automating - including, eventually, the low-skill jobs that at the moment are too expensive to automate - may actually result in the destruction of profits. The fact is that robots are brilliant at supply, but they don't create demand. Only humans create demand - and if the majority of humans are so poor that they can only afford basic essentials, the economy will be constrained by lack of demand, not lack of supply. There would be no scarcity of products, at least to start with....but there would be scarcity of the means to obtain them.

by Frances Coppola, Pieria | Read more:
Image: uncredited

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Lucio Fontana, Concetto spaziale, 1977
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In Florida, a Food-stamp Recruiter Deals with Wrenching Choices

A good recruiter needs to be liked, so Dillie Nerios filled gift bags with dog toys for the dog people and cat food for the cat people. She packed crates of cookies, croissants, vegetables and fresh fruit. She curled her hair and painted her nails fluorescent pink. “A happy, it’s-all-good look,” she said, checking her reflection in the rearview mirror. Then she drove along the Florida coast to sign people up for food stamps.

Her destination on a recent morning was a 55-and-over community in central Florida, where single-wide trailers surround a parched golf course. On the drive, Nerios, 56, reviewed techniques she had learned for connecting with some of Florida’s most desperate senior citizens during two years on the job. Touch a shoulder. Hold eye contact. Listen for as long as it takes. “Some seniors haven’t had anyone to talk to in some time,” one of the state-issued training manuals reads. “Make each person feel like the only one who matters.”

In fact, it is Nerios’s job to enroll at least 150 seniors for food stamps each month, a quota she usually exceeds. Alleviate hunger, lessen poverty: These are the primary goals of her work. But the job also has a second and more controversial purpose for cash-strapped Florida, where increasing food-stamp enrollment has become a means of economic growth, bringing almost $6 billion each year into the state. The money helps to sustain communities, grocery stores and food producers. It also adds to rising federal entitlement spending and the U.S. debt.

Nerios prefers to think of her job in more simple terms: “Help is available,” she tells hundreds of seniors each week. “You deserve it. So, yes or no?”

In Florida and everywhere else, the answer in 2013 is almost always yes. A record 47 million Americans now rely on the Supplemental Nutrition Assistance Program (SNAP), also known as food stamps, available for people with annual incomes below about $15,000. The program grew during the economic collapse because 10 million more Americans dropped into poverty. It has continued to expand four years into the recovery because state governments and their partner organizations have become active promoters, creating official “SNAP outreach plans” and hiring hundreds of recruiters like Nerios.

A decade ago, only about half of eligible Americans chose to sign up for food stamps. Now that number is 75 percent. (...)

Did he deserve it, though? Lonnie Briglia, 60, drove back to his Spanish Lakes mobile home with the recruiter’s pamphlets and thought about that. He wasn’t so sure.

Wasn’t it his fault that he had flushed 40 years of savings into a bad investment, buying a fleet of delivery trucks just as the economy crashed? Wasn’t it his fault that he and his wife, Celeste, had missed mortgage payments on the house where they raised five kids, forcing the bank to foreclose in 2012? Wasn’t it his fault the only place they could afford was an abandoned mobile home in Spanish Lakes, bought for the entirety of their savings, $750 in cash?

“We made horrible mistakes,” he said. “We dug the hole. We should dig ourselves out.”

Now he walked into their mobile home and set the SNAP brochures on the kitchen table. They had moved in three months before, and it had taken all of that time for them to make the place livable. They patched holes in the ceiling. They fixed the plumbing and rewired the electricity. They gave away most of their belongings to the kids — “like we died and executed the will,” he said. They decorated the walls of the mobile home with memories of a different life: photos of Lonnie in his old New Jersey police officer uniform, or in Germany for a manufacturing job that paid $25 an hour, or on vacation in their old pop-up camper.

A few weeks after they moved in, some of their 11 grandchildren had come over to visit. One of them, a 9-year-old girl, had looked around the mobile home and then turned to her grandparents on the verge of tears: “Grampy, this place is junky,” she had said. He had smiled and told her that it was okay, because Spanish Lakes had a community pool, and now he could go swimming whenever he liked.

Only later, alone with Celeste, had he said what he really thought: “A damn sky dive. That’s our life. How does anyone fall this far, this fast?”

And now SNAP brochures were next to him on the table — one more step down, he thought, reading over the bold type on the brochure. “Applying is easy.” “Eat right!” “Every $5 in SNAP generates $9.20 for the local economy.”

by Eli Saslow, Washington Post |  Read more:

Image: Michael S. Williamson / The Washington Post

Fifth Avenue, New York City, 1975, Joel Meyerowitz
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Call of the Wild: Pouncing on Reports of Anchorage’s Big Wild Life

Most people get to the office and pour themselves a cup of coffee. Jessy Coltrane, the Anchorage area wildlife biologist with the Alaska Department of Fish and Game, grabs a cup of coffee and, if it’s summer, answers her first bear or moose call of the day. Some days the call comes before the java. Some days she never makes it into the office, unless you consider her pickup truck her office.

One day in mid-June, her first call was from Laura Krip in Muldoon, but Coltrane was chasing bears and moose in east Anchorage and couldn’t check her office messages until after noon. Krip’s message, now some six hours old, said she and her 6-year-old daughter had just found themselves nose to nose with a grizzly bear.

Krip has walked her dogs in a wooded area along Chester Creek, just east of Muldoon Road, one or more times a day for years. By her estimate she’s walked those trails “thousands of times.” That day was different. (...)

In May and June it’s not just the bears that keep Coltrane hopping. She gets as many calls about moose. Cow moose drop calves from mid-May to mid-June and the young calves are often separated from their mothers by fences, traffic and other urban hazards. Young moose calves are also vulnerable to bears. Hiding out in the city is not a surefire way to avoid the big predators.

On the same morning as Krip’s close encounter, before she got to her office, Coltrane fielded several moose calls. A caller had heard thrashing and bawling in his backyard off Upper DeArmoun Road and assumed that a bear had killed a calf, a cow, or both during the night. He wanted any carcasses hauled away so the bear wouldn’t linger and possibly defend its kill. This situation occurs as many as a dozen times each summer in Anchorage. Sometimes the bear is still there. Coltrane and her assistant, Dave Battle, spent several hair-raising minutes crawling through a dense thicket of alders looking for a dead moose. Battle’s 12-gauge shotgun was locked and loaded; Coltrane was packing a can of bear spray because her finger’s broken and bandaged. The search didn’t turn up any carcasses. A cow moose is a formidable opponent, even for a bear, and it appears that she won the skirmish. (...)

Being the Anchorage area wildlife biologist is a lot like being a firefighter. You’re on standby and whatever your immediate plans might be, the rest of your day is just a phone call away.

Coltrane and Battle arrived at the Alaska Department of Fish and Game office after noon and Coltrane finally heard Krip’s adrenaline-spiked phone message. She headed for Muldoon, knowing it was too late to find the bear, but wanting to familiarize herself with the trail where Krip had encountered the bear. On the way she received a more-urgent call. A woman, who had locked herself in a bathroom, was reporting a bear in her house. Coltrane called the woman and headed for the Hillside.

by Rick Sinnott, Alaska Dispatch |  Read more:

Image: Rick Sinnott

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Special Lady Friend

We "met cute," or at least what passes for cute with me. It was a Friday in mid-April and I was in a room waiting for a meeting to begin when she walked in. She was the last person I expected to meet - not because of the fact that a nanosecond after extending my hand in greeting I was instantly smitten - no, because I had "stopped looking." It had been months since I had been out on a date, the last one not so much a spectacular crash and burn as an evening devoid of any chemistry or electricity led me to a long winter's hibernation and a blizzard of work to distract me from the idea that nearly three years after my ex-wife had moved out, that I would ever find love.

As she closed her hand in mine, I introduced myself, but instead of returning the courtesy, she said, "you know, someone from your office could have told me what this fucking meeting was about." I was hooked. I laughed, told her to give me her card and I would personally call her prior to any future engagements. We settled in with the larger group and I'm not going to lie, I placed myself in a spot where I could take a good look at her. She was opinionated, passionate and believed very much in her cause; I spoke once or twice, but was completely taken with her. A few hours later, in the spirit of dishing a little bit back to her, I called her at her office … something something about being a man of my word and making sure she had my contact information. We fell into a casual conversation that crept past 10 minutes, then 15, 20, and well past half an hour she was as smart as she was foul mouthed, sharp as she was sexy.

She told me she was meeting a friend for a drink and I should join them. She asked me to go outside my comfort zone (I'm introverted by nature and can be reluctant to just up and meet strangers). I was nervous, didn't know if she was dating someone, engaged, hell, maybe even married (though she wore no ring), but I took a chance, and said yes. Her friend peeled off after about an hour, the sparks between us were unmistakeable. We sat and talked for another four hours, the time just flew by. I felt as comfortable in her presence as if I had known her for years and could not believe that I literally had awoken that morning not even knowing she existed.

We were on the phone the next morning, that afternoon and had a dinner date the following night. Hours bled away as the details of our lives unfolded organically, naturally, like two people who just knew each other. That we ran in similar professional circles helped, we could relate to each other's work and laugh at the absurdities we saw every day, but also that we were independent types who did not suffer fools gladly and liked being the smartest people in the room. The attraction was intense and unthinking, something I had not experienced in a very very long time. Friends and family told us how happy we looked and sounded and were shocked that we had literally just met. (...)

Memorial Day weekend we went "down the shore" and spent the day with her family and a larger group of her family's friends who get together every year at that time for a day long party. Another affirmative statement of the seriousness with which she viewed our relationship. I could not know it would be the last time we would see each other (at least on good speaking terms). The following day, she got called out of state on business for a week - I was totally supportive, offered to do what I could in her absence (check her mail, stop by her house, etc.) and we kept up our nightly calls while she was away.

When she came back … I don't know, she was different. She called me the afternoon she returned (a Saturday) and I offered to make her dinner. She had to take another call and then … around midnight she got around to sending a text message saying she had been pulled into work. We spoke the following day with another offer for dinner and she again demurred. We made plans for lunch on Wednesday. When Wednesday rolled around, she did not return a message I left until 12:30 claiming she lost track of time (we both had meetings at 2 so by 12:30 it would have been impossible to meet). I asked her what was going on. She was cagey, she sounded stressed and distant. The thing is, she had not been like this AT ALL until then. In fact, knowing she had been out of the office for a week, I kept trying to give her outs to NOT make plans, but she would make them and then totally ignore them. It was so out of character for her and it made me confused, not mad. She was always good about keeping in touch, in fact had told me early on that touching base for no other reason than making sure the other one wasn't lying in a heap at the bottom of the stairs was important to her ("help, I've fallen and I can't get up.") but now, almost out of nowhere, all that went out the window.

We talked briefly on Thursday, and then again on Friday from work. She had to go but told me, "I'll call you tonight." And that was it. She was a ghost. Never called, never returned a call, voice mail or the (humiliating) "so I guess we broke up" email I sent 10 days later after she went totally radio silent. (...)

None of it made sense. How do you go from wanting to know someone else is not in a pile at the bottom of a flight of stairs to shutting them out completely? Not even saying goodbye? People date, things don't work out, you move on, but this was not a went-out-once-there-was-no-chemistry-so-you-just-dont-return-a-phone-call-or-text-message situation. I was left to wonder what was really going on and why this woman, whose FIRST WORDS TO ME were rather blunt, suddenly couldn't scare up the courage to just explain what happened, even if it was to pick up the phone for 2 minutes to say, whatever, "it's not you, it's me" "thanks for the memories" "good luck, asshole." My relationship history may be a bit spotty, but even *I* know enough to know that pulling this kind of disappearing act is wrong.

by SLG, Scary Lawyer Guy Blog |  Read more:

Image: Arles (by Antonio Palmerini) via:

Fiona Apple

They Know Much More Than You Think

[ed. Excellent article. If there's anyone wondering why this Snowden thing is such a big deal, read the take-away quote at the end.]

Looking back, the NSA and its predecessors have been gaining secret, illegal access to the communications of Americans for nearly a century. On July 1, 1920, a slim balding man in his early thirties moved into a four-story townhouse at 141 East 37th Street in Manhattan. This was the birth of the Black Chamber, the NSA’s earliest predecessor, and it would be hidden in the nondescript brownstone. But its chief, Herbert O. Yardley, had a problem. To gather intelligence for Woodrow Wilson’s government, he needed access to the telegrams entering, leaving, and passing through the country, but because of an early version of the Radio Communications Act, such access was illegal. With the shake of a hand, however, Yardley convinced Newcomb Carlton, the president of Western Union, to grant the Black Chamber secret access on a daily basis to the private messages passing over his wires—the Internet of the day.

For much of the next century, the solution would be the same: the NSA and its predecessors would enter into secret illegal agreements with the telecom companies to gain access to communications. Eventually codenamed Project Shamrock, the program finally came to a crashing halt in 1975 when a Senate committee that was investigating intelligence agency abuses discovered it. Senator Frank Church, the committee chairman, labeled the NSA program “probably the largest governmental interception program affecting Americans ever undertaken.”

As a result of the decades of illegal surveillance by the NSA, in 1978 the Foreign Intelligence Surveillance Act (FISA) was signed into law and the Foreign Intelligence Surveillance Court (FISC) came into existence. Its purpose was, for the first time, to require the NSA to get judicial approval for eavesdropping on Americans. Although the court seldom turned down a request for a warrant, or an order as it’s called, it nevertheless served as a reasonable safeguard, protecting the American public from an agency with a troubling past and a tendency to push the bounds of spying unless checked.

For a quarter of a century, the rules were followed and the NSA stayed out of trouble, but following the September 11 attacks, the Bush administration decided to illegally bypass the court and began its program of warrantless wiretapping. “Basically all rules were thrown out the window and they would use any excuse to justify a waiver to spy on Americans,” I was told by Adrienne J. Kinne, who in 2001 was a twenty-four-year-old voice intercept operator who conducted some of the eavesdropping. She or her superiors did not have to get a warrant for each interception. “It was incredibly uncomfortable to be listening to private personal conversations of Americans,” she said. “And it’s almost like going through and stumbling and finding somebody’s diary and reading it.”

All during this time, however, the Bush administration was telling the American public the opposite: that a warrant was obtained whenever an American was targeted. “Anytime you hear the United States government talking about a wiretap, it requires—a wiretap requires a court order,” President George W. Bush told a crowd in 2004. “Nothing has changed, by the way. When we’re talking about chasing down terrorists, we’re talking about getting a court order before we do so.” After exposure of the operation by The New York Times in 2005, however, rather than strengthen the controls governing the NSA’s spying, Congress instead voted to weaken them, largely by codifying into the amendment to FISA what had previously been illegal.

At the same time, rather than calling for prosecution of the telecom officials for their role in illegally cooperating in the eavesdropping program, or at least a clear public accounting, Congress simply granted them immunity not only from prosecution but also from civil suits. Thus, for nearly a century, telecom companies have been allowed to violate the privacy of millions of Americans with impunity. (...)

One man who was prescient enough to see what was coming was Senator Frank Church, the first outsider to peer into the dark recesses of the NSA. In 1975, when the NSA posed merely a fraction of the threat to privacy it poses today with UPSTREAM, PRISM, and thousands of other collection and data-mining programs, Church issued a stark warning:

That capability at any time could be turned around on the American people and no American would have any privacy left, such [is] the capability to monitor everything: telephone conversations, telegrams, it doesn’t matter. There would be no place to hide. If this government ever became a tyranny, if a dictator ever took charge in this country, the technological capacity that the intelligence community has given the government could enable it to impose total tyranny, and there would be no way to fight back, because the most careful effort to combine together in resistance to the government, no matter how privately it was done, is within the reach of the government to know. Such is the capability of this technology…. I don’t want to see this country ever go across the bridge. I know the capacity that is there to make tyranny total in America, and we must see to it that this agency and all agencies that possess this technology operate within the law and under proper supervision, so that we never cross over that abyss. That is the abyss from which there is no return.

by James Bamford, NY Review of Books | Read more:
Image: NSA

Night Time Reading

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Halliburton Agrees to Plead Guilty in Spill

[ed. Sweet... and now they're on Double Secret Probation. Destroying evidence? That's so Guantanamo these days. Let's only hope Dick Cheney's stock options are secure.]

Halliburton Energy Services has agreed to plead guilty to destroying evidence in connection with the 2010 Gulf oil spill, the Department of Justice said Thursday.

Federal officials said in a news release that a criminal information charging Hallburton with one count of destruction of evidence was filed in federal court in Louisiana.

Halliburton has agreed to pay the maximum fine, be on probation for three years and continue to cooperate with the government's criminal investigation, according to the news release, which did not list the amount of the fine.

The Houston-based company has also made a $55 million voluntary contribution to the National Fish and Wildlife Foundation. It was not a condition of the court agreement, the news release says.

The company said in a statement Thursday night that it had agreed to plead guilty "to one misdemeanor violation associated with the deletion of records created after the Macondo well incident, to pay the statutory maximum fine of $200,000 and to accept a term of three years probation."

The Justice Department has agreed it will not pursue further criminal prosecution of the company or its subsidiaries for any conduct arising from the 2010 spill, Halliburton's statement said, adding that federal officials have also "acknowledged the company's significant and valuable cooperation during the course of its investigation."

by AP |  Read more:

Image: Halliburton

Mafalda Silva, Rebirth.

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[ed. "Rivers know this: there is no hurry. We shall get there some day."

~ Winnie the Pooh (A.A. Milne).]

Green Mountains besides the Crystal River by Shi Yi
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Shugo Tokumaru

Climber dangles from Alaska’s Mount Barrille, National Geographic | December 1987

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Eric White. 1961 Ford Galaxie 500 Sunliner (Pierrot Le Fou), 2010. Oil on canvas, 48 x 48".
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Say Goodbye to the Tech Sounds You’ll Never Hear Again

The forward march of technology has a drum beat. These days, it's custom text-message alerts, or your friend saying "OK, Glass" every five minutes like a tech-drunk parrot. And meanwhile, some of the most beloved sounds are falling out of the marching band.

The boops and beeps of bygone technology can be used to chart its evolution. From the zzzzzzap of the Tesla coil to the tap-tap-tap of Morse code being sent via telegraph, what were once the most important nerd sounds in the world are now just historical signposts. But progress marches forward, and for every irritatingly smug Angry Pigs grunt we have to listen to, we move further away from the sound of the Defender ship exploding.

Let's celebrate the dying cries of technology's past. The following sounds are either gone forever, or definitely on their way out. Bow your heads in silence and bid them a fond farewell.

The Telephone Slam

Ending a heated telephone conversation by slamming the receiver down in anger was so incredibly satisfying. There was no better way to punctuate your frustration with the person on the other end of the line. And when that receiver hit the phone, the clack of plastic against plastic was accompanied by a slight ringing of the phone's internal bell. That's how you knew you were really pissed -- when you slammed the phone so hard, it rang.

There are other sounds we'll miss from the phone. The busy signal died with the rise of voicemail (although my dad refuses to get voicemail or call waiting, so he's still OG), and the rapid click-click-click of the dial on a rotary phone is gone. But none of those compare with hanging up the phone with a forceful slam.

Tapping a touchscreen just does not cut it. So the closest thing we have now is throwing the pitifully fragile smartphone against the wall.

The Modem

Go ahead and imitate the bleep bleep boop hiss of a 56k modem in front of anyone under the age of 20. They'll give the same look a dog makes when you present it with a hardcover book as a toy. But those noises where the first indication that you were joining, at the time, a new and wonderful world. A connected world where information (most of it wrong) flowed freely, and you could talk with both friends and complete strangers without running up a huge phone bill. Now, everything is constantly connected, and internet access is like electricity. It's just there. But there was a time when your desire to chat on IRC and check on your Geocities' guestbook was behind a magical handshake of beeps and hisses, all coming out of a tiny box plugged into your landline.

by Roberto Baldwin, Wired |  Read more:

Photo: Ariel Zambelich/Wired

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