Monday, April 18, 2016

Death in a Hospice Room Captured by an Artist and a Poet

For T’s ongoing series, the Rome prize-winning artist Nari Wardresponded to a poem by Carol Muske-Dukes, the former poet laureate of California. 
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“Off the hook” by Nari Ward, 2016.CreditCourtesy of the artist and Lehmann Maupin, New York and Hong Kong 
LIVE, DIE: A GHAZAL
The door of the hospice room in which you die
stays open. Dreaming, you drift there, dying
in that floating bed of fierce arguments that live
on, until the moment when you no longer live.
Cheered on by a chorus of voices as you die,
“Go now! Go to the light!” Still, Don’t die!
Cries a dissenting voice within: a flickering live
Wire behind the nightlight’s angel face. Live
News at 7 AM, after the great orange moon dies.
Sunlight fingers a blue bowl of shaved ice. Die?
No. Not now. A tiny version of you pops out alive
From a burning wood, swims upstream, panting. Live
as Nurse Good’s softshoe entrance to applause, dying.
She smiles, squints at her syringe, held up, lit, like dye
bubbles lengthening in a radiant corridor: see lives
unborn (half-souls blindly pushing toward life)
gather outside time, inside your mind. Move! Die!
they cry. You won’t acquiesce. Mother, I cannot die
For you, I don’t know how. You brought me here alive.
You taught me everything but how to let you die.
— CAROL MUSKE-DUKES

Carol Muske-Dukes reads “Live, Die: A Ghazal” 

Audio

Sunday, April 17, 2016

We Got the Eulogy Wrong !!

The other day, Andrew Horn sat on a red exercise ball in his startup’s Williamsburg office, a tricked-out former garage, and explained why he was trying to sell people on the idea of creating eulogies for the living. “I spoke at the Burning Man TEDx two years ago, and the talk was called ‘We Got the Eulogy Wrong,’ ” he said. In a video of the address, he can be seen wearing gold shorts and a Sgt. Pepper jacket, saying, “If we look at the word ‘eulogy,’ it comes from the ancient Greek word eulogia, and eulogia simply means ‘praise.’ ” The desire to be present at one’s own funeral is nothing new. In an era of near-constant mutual affirmation—pause here to check the number of likes on your most recent selfie—why let a little thing like death stand in the way?
In Brooklyn, Horn, who wore a fedora and an enormous gray scarf, launched into the origin story of Tribute, a “living eulogy” video-compilation service that he co-founded last year. (The company’s slogan: “The most meaningful gift on earth.”) When Horn turned twenty-seven, his girlfriend, Miki Agrawal—the C.E.O. of Thinx period underwear—asked his friends and relatives to send her one-minute clips explaining why they loved the birthday boy. She screened them at a surprise party. “I’m sitting there and I see my mom telling me how proud of me she is,” Horn, who is now twenty-nine, said. “And I remember wanting to cry? And holding it back at first. And then I was, like, just let it go.” He bawled for twenty minutes.
Tribute’s precursors include the roast and the Festschrift. Its Web site offers a variety of ways to put together a video montage: for twenty-five dollars, you can make one yourself; for a hundred and twenty-five dollars, a “concierge” will e-mail friends a list of prompts (“What do you admire about Jerry?”), teach them how to film themselves, and edit the love-fest for you. For even more money, Tribute will bring in professional producers and editors. The initial funding (more than eight hundred thousand dollars) came from Kickstarter and angel investors. Horn hopes that Tribute will become the “Hallmark of video messaging”—an industry that he estimates will be worth twenty-seven billion dollars by 2022. (Tribute’s competitors include ThankView video cards and Ditty, which converts text messages into music videos.)
Cartoon
Horn grew up in Hawaii, and planned to go into “night-life stuff,” until, at the age of twenty-two, he had an epiphany—he wanted to help people. He founded a nonprofit that gets children with disabilities involved in sports, then started a sort of Craigslist for the disabled. He met Agrawal on a Summit Series cruise. (“It’s like a modern-day Davos for young creatives,” Horn said.) Four years ago, at Burning Man, they were married, by the Reverend Funk Pocket, on the Bridge to Nowhere. He met Rory Petty, a software engineer and Tribute’s co-founder, in the gym of the condo building in Williamsburg where they both live. “Andrew is the wild yin to my let’s-just-stay-on-the-couch-and-watch-Netflix yang,” Petty said, at Tribute’s office. He wore a sweater with elbow patches.
More than thirteen thousand people have made Tribute videos. Users tend to be female (sixty per cent), and between the ages of eighteen and forty. To watch a number of the videos back to back is to get the sense that the world suffers from a glut of best dads; that humans have yet to comprehend that their most flattering angle is not from below; and that everyone’s apartment is furnished with at least one item from IKEA.
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From “Steve’s 60th Birthday”: “You are sixty years of vintage awesomeness and goodness.” From “Who Loves Dr. Nandi?”: “He truly, truly just wants to make the world a better place by encouraging everyone to be their own health hero.” From “Coach Lucy Tribute”: “Thank you for teaching me, um, how to skate backwards faster and shoot better.” From “College Graduation Tribute”: “I miss having our little dance parties! I’m so lonely! Don’t leave me! Just kidding.” The final product can be delivered digitally or on a bamboo thumb drive.
Petty said, “We’ve had people do virtual baby showers from Australia. We’ve had virtual bachelor and bachelorette parties.” They’ve done corporate-recognition videos and a video for a guy who was going to prison for financial malfeasance. At least one Tribute video has been a eulogy in the traditional sense. This was for Dan Fredinburg, an early investor in the company who worked at Google X. Last year, Fredinburg died while climbing Mt. Everest, and hours of footage poured in, which the team cut down to a highlight reel.
Will Correa-Munoz, a Tribute employee, popped out an earbud and told the story of a video he’d made for a friend’s college graduation. He recalled, “Honestly, our type of relationship is, like, ‘bro’—you know, we make fun of each other and stuff. But when he put the U.S.B. in his computer he just started crying. He was hugging me!”
Tribute tracks what Horn and Petty call the “T.O.J. statistic”—“eighty per cent of people reported crying tears of joy,” Horn said. “I can show you the SurveyMonkey right now.” 
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Emma Allen is a member of The New Yorker’s editorial staff.

Tuesday, April 5, 2016

End-of-Life Care/Counseling and Medicare/Doctors/Patients

Philadelphia Inquirer, Sunday, March 27, 2016, Page G1, HEALTH section:


End-of-life care and Medicare

Doctors can now bill for end-of-life counseling.

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istockphoto.com
JUPITER, Fla. — She didn’t want to spend the rest of her days seeing doctors, the 91-year-old woman told Kevin Newfield as he treated a deep wound on her arm.
“You don’t have to, but you have to tell me what you do want,” the orthopedic surgeon replied.
“I’m not afraid of dying. I’m afraid of being 106,” she told Newfield and her daughter, who was in the room with them.
The woman’s admission in Newfield’s south Florida office that January day triggered a 20-minute discussion about living wills, hospice, and other end-of-life questions, Newfield said.
Newfield is comfortable having those conversations. Many doctors are not, but a Medicare policy, known as advance care planning, that took effect in January could help change that.
Physicians can now bill Medicare $86 for an office-based end-of-life counseling session with a patient for as long as 30 minutes. Medicare has set no rules on what doctors must discuss during those sessions. Patients can seek guidance on completing advance directives stating if or when they want life support measures such as ventilators and feeding tubes, and how to appoint a family member or friend to make medical decisions on their behalf if they cannot, for instance.
The new policy reflects Americans’ growing interest in planning the last stage of their lives when they may be unable to make their wishes known.
In 2014, the Institute of Medicine, an influential panel of experts, found that the nation’s health system was not adequately dealing with end-of-life care, and among its recommendations was that insurers pay providers for advance-care planning discussions.
Last September, aKaiser Family Foundation poll found 89 percent of the public said that doctors should discuss end-of-life care issues with their patients, though just 17 percent of Americans — and 34 percent of people 75 and older — said that they have had such conversations. (KHN is an editorially independent program of the foundation.)
Under the new Medicare policy, doctors can give end-of-life advice during a senior’s annual wellness visit or in aroutine office visit. Nurse practitioners and physician assistants can also get paid for having the talks. Counseling can also occur in hospitals.
“For doctors already providing this counseling the payment is an added benefit and for doctors on the fence about talking about the issue with patients, this may be enough to inspire them to try it,” said Paul Malley, president of Aging with Dignity, anational advocacy group based in Tallahassee, Fla.
Newfield, the Florida surgeon, is less optimistic. He said that he doesn’t think the money will cause him to initiate more end-of-life discussions and that doctors who were not having them before now are unlikely to start. After all, said New-field, doctors make money by keeping people alive.
The payment idea was first floated in 2009, as part of the congressional debate over the Affordable Care Act. Back then, a proposal to have Medicare pay for such discussions sparked political controversy and fueled concern that they would lead to so-called death panels that could influence decisions to avoid medical care. The proposal was quickly dropped.
Medicare’s policy now has broad support from health providers and patient groups, but neither physicians nor the American Medical Association foresee a surge in end-of-life planning among Medicare’s more than 50 million enrollees. The AMA, which supports the reimbursement, estimates that Medicare will pay for fewer than 50,000 counseling sessions in 2016.
The numbers may well be held back by the small reimbursement rate for half an hour of counseling, but another obstacle rests with doctors themselves. Many are not trained to offer such advice or they are uncomfortable talking about it with patients.
“Just the first step,” the journal Health Affairs headlined an article about Medicare’s new policy in its March issue.
“The perception that lack of training could be a major stumbling block to the greater implementation of advance care planning is widely shared,” wrote David Tuller, a lecturer at the University of California-Berkeley’s School of Public Health.
Medical schools such as the Cleveland Clinic Lerner College of Medicine and the University of California-San Francisco have recently begun expanding training on the subject.
“This kind of training is crucial — one of the things that gets in the way of understanding and using patient preferences is that clinicians are often uncomfortable having these challenging conversations,” said Robert Wachter, professor and interim chair of UCSF’s Department of Medicine. “The issue of end-of-life conversations is so compelling and fraught — teaching it also allows us to teach about more general communication skills.”
Some doctors admit they could do better.
Scott Dunn, a family physician in Sand-point, Idaho, said he regrets not having done more recently to help a 76-year-old patient avoid spending his final weeks in intensive care, connected to machines breathing for him and feeding him. That meant the patient may have needlessly suffered and cost the health system tens of thousands of extra dollars, he said.
“I wish I had taken the time months earlier to have that end-of-life discussion, but I did not,” he said.
Dunn said the incentive payment will entice him to have more such discussions with patients, but they won’t become routine in his practice. “Medicare pays us more to do other stuff.”
Michael Guarino came to a different view after watching his elderly father die last year, weeks after he became unable to move or talk. Guarino decided then that the 800-physician organization of which he is executive director — the Independent Physician Association of Nassau/ Suffolk Counties in New York — would include end-of-life discussions for all adult patients.