Rural Hospice That Spurns Federal Funds Has Offered Free Care for 40 Years

Helping her father die at home “was the most meaningful experience in my nursing career,” said Rose Crumb. She went on to found Volunteer Hospice of Clallam County in Port Angeles, Wash.

Dan DeLong for Kaiser Health News

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Dan DeLong for Kaiser Health News

Rose Crumb can’t even count the number of people she’s helped die.

The former nurse, 91, who retired in her mid-80s, considers the question and then shakes her head, her blue eyes sharp above oval spectacles.

“Oh, hundreds,” estimates Crumb, the woman who almost single-handedly brought hospice care to the remote Pacific Northwest city of Port Angeles, Wash., nearly 40 years ago.

But the actual number of deaths she has witnessed is likely far higher — and Crumb’s impact far greater — than even she will admit, say those affiliated with the Volunteer Hospice of Clallam County.

“[Rose] let people know hospice is not all about dying,” said Bette Wood, who manages patient care for VHOCC. “Hospice is about how to live each and every day.”

In a nation where Medicare pays nearly $16 billion a year for hospice care, and nearly two-thirds of providers are for-profit businesses, the tiny volunteer hospice is an outlier.

Since 1978, the hospice founded by Crumb — a mother of 10 and devoted Catholic — has offered free end-of-life care to residents of Port Angeles and the surrounding area. She was the first in the region to care for dying AIDS patients in the early days of the epidemic. Her husband, “Red” Crumb, who died in 1984 of leukemia, was an early patient.

“He died the most perfect death,” Rose Crumb told visitors on a recent afternoon. “He spent time alone with each of our kids. That meant so much to him.”

At the same time, Crumb and her successors have refused to accept federal funding or private insurance, relying instead on a mostly volunteer staff and community donations to keep the hospice going.

That’s rare, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization, NHPCO, a trade group. Most of the nation’s 4,000-plus hospices receive Medicare payments for their services. He estimates there are only a few volunteer hospices like Crumb’s in the U.S.

There was pressure in the early years to “take the money,” as Crumb put it. But she had little use for the regulations that accompanied federal Medicare reimbursement starting in 1982.

“It was our experience that we could operate on a much smaller budget and we could be more flexible in providing services,” Crumb wrote in a 2007 newsletter.

Today, the hospice relies on 10 paid staff, 160 volunteers and an annual budget of less than $400,000 to provide end-of-life care for 300 patients each year, according to federal records.

Patients don’t have to meet Medicare’s criteria of having six months or less to live to be enrolled, though most do. They can keep their own doctors instead of turning over care to a hospice physician. If families need medical equipment, the hospice supplies it for free.

Eve Farrell holds a portrait of her husband, Daniel, in her Port Angeles, Wash., home. He died in January of chronic obstructive pulmonary disease.

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“I don’t know how I would have made it without them,” said Eve Farrell, 82, whose husband, Daniel, had cardiopulmonary obstructive disorder, or COPD. He died in January at age 80 after four months of hospice care at the couple’s Port Angeles home.

Staffers helped her husband shower when she couldn’t lift him, offered advice about medication and gave her breaks from relentless caregiving.

“We felt like Dan was the only patient they had,” Eve Farrell said.

Crumb was drawn to hospice care in the 1970s, after the book “On Death and Dying” by Dr. Elisabeth Kübler-Ross galvanized conversations in the U.S. about how to treat the terminally ill. Years earlier, when Crumb’s father was diagnosed with lymphoma, she helped him die at home.

“It was the most meaningful experience in my nursing career,” she said.

In April 1977, when Crumb attended a convention that included a program on hospice, she was hooked.

“Everything clicked,” she recalled. “I thought ‘Yes!’ “

Organizers had little money and less support, Crumb said. The local medical community was skeptical about hospice, which started in the U.S. in Connecticut in 1974.

“Some of the doctors called us ‘the death squad,'” Crumb said. Crumb’s refusal to take federal funds put her at odds with the for-profit hospice industry, which lobbied state lawmakers in 1992 to eliminate an exemption that allowed volunteer hospices to remain unlicensed.

Crumb had to enlist the services of her eighth child, Patrick Crumb, then a corporate lawyer, to fight back.

“In my view, they were clearly misrepresenting the current status of the law,” recalled Patrick Crumb, 55, who is now president of the AT&T Sports Network. “I told them, ‘If you do what you’re threatening to do, I’m going to sue you and I’m going to win.’ “

Lawmakers eventually agreed to create an exemption to state law that allows volunteer hospices to remain unlicensed and unregulated. Crumb’s hospice remains the only agency in state history to use it.

In 2002, the volunteer hospice faced a for-profit rival, Assured Home Health and Hospice, now owned by the LHC Group based in Lafayette, La. Documents show that Assured officials predicted they’d serve 70 percent of the local hospice market within two years.

Since 1978, the Volunteer Hospice of Clallam County has offered free end-of-life care to residents of Port Angeles, Wash.

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Dan DeLong for Kaiser Health News

But competition was fierce, recalled Dr. Tom Kummet, medical director at the Olympic Medical Cancer Center, who referred dying patients to hospice care.

“It was a bit of an awkward time,” he said. “Assured hospice wanted to be a successful business. And Volunteer Hospice was going to negatively impact their chances of being a successful business.”

Fifteen years later, Assured still struggles, said Leslie Emerick, director of public policy and outreach for the Washington State Hospice and Palliative Care Organization.

“They tread lightly up there because of Rose,” Emerick said. “Rose is a beloved person in that community.”

Officials with LHC declined to discuss competition in the Port Angeles market or to say how many patients Assured has enrolled.

“We value the care that Volunteer Hospice provides for our community,” Candace Hammer Chaney, a local Assured manager and community liaison, said in a statement.

Emerick and other hospice industry officials said volunteer hospices don’t offer the range of services required of those who receive federal funding. And, Emerick added, there’s little oversight.

“They don’t have a reputation of negligence or complaints as far as I’m aware, but there’s always the possibility of that when they’re unlicensed or unregulated,” she said.

But Astrid Raffinpeyloz, VHOCC’s volunteer services manager, said the hospice wouldn’t have lasted long in a small town if there were problems.

“We don’t have oversight from the government, but we have minute oversight from the community,” said Raffinpeyloz.

Mike Clapshaw poses with a picture of him and his wife, Deborah, in his Port Angeles, Wash., home.

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For Mike Clapshaw, 71, there was no question about who would care for his wife, Deborah, when her cancer came back for the third time, leading to her death in December 2014. She was 60. For the last four months of her life, VHOCC staff eased her pain — and his.

“It was always, ‘What can I do to help?’ ” he said.

Helping was always the point, said Rose Crumb, whether the pain at the end of life was physical, emotional — or both.

“Some people just need someone to listen to them,” she said.

Crumb at nearly 92, now suffers from osteoporosis, congestive heart failure and other ailments that plagued her patients in earlier years. But she’s not worried about her final days.

“I’m all signed up for hospice,” she said. “I have everything written down.”

KHN’s coverage of end-of-life and serious illness issues is supported byThe Gordon and Betty Moore Foundation.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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Los Angeles Dodgers Take National League Pennant, Beating Chicago Cubs 11-1

Los Angeles Dodgers’ Enrique Hernandez his grand slam in Game 5 of the National League Championship Series against the Chicago Cubs on Thursday in Chicago.

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Matt Slocum/AP

The Los Angeles Dodgers nailed down the National League championship and a trip to the World Series Thursday by beating the Chicago Cubs 11-1 to take the series four games to one. Left fielder Enrique Hernandez was on fire for the Dodgers, hitting three home runs and driving in seven runs at Wrigley Field in Chicago.

The Dodgers were in charge all the way. Their biggest inning was the third, with four runs on a grand slam by Hernandez. He also hit two other homers and joined nine other players, including Babe Ruth, who have hit three home runs in one postseason game.

The defending champion Cubs got on the board with a solo homer by Kris Bryant in the fourth inning.

Los Angeles will play the winner of the American League Championship Series between the New York Yankees and the Houston Astros. The Yankees lead three games to two in the best-of-seven series. Game 6 is Friday night.

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Sure, There's A Health Care Deal. That Doesn't Mean It Can Pass

Sen. Lamar Alexander, R-Tenn., chairman of the Senate Health, Education, Labor, and Pensions Committee, talks to reporters on Capitol Hill Wednesday.

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Carolyn Kaster/AP

Updated at 3:55 p.m. ET

A bipartisan coalition of 24 senators — 12 Republicans and 12 Democrats — has signed on to health care legislation to prop up the individual insurance market and keep premiums down. With the expected support of all Senate Democrats, it could have the votes to pass the chamber. But questions remain over when it might actually get a vote, as well as whether President Trump and House Republicans would bring the bill over the finish line.

“This is a first step: Improve it, and pass it sooner rather than later. Our purpose is to stabilize and then lower the cost of premiums in the individual insurance market for the year 2018 and 2019,” said Sen. Lamar Alexander, R-Tenn., on the Senate floor. Alexander and Sen. Patty Murray, D-Wash., crafted the compromise bill.

Alexander and Murray have been working on this legislation for months. Negotiations initially began after the Senate failed to pass legislation to repeal and replace Obamacare back in July.

Most Americans get health insurance through their employer or from the government. About 18 million Americans get their insurance through the individual market established by the Affordable Care Act. “They’re the ones we’re worried about; they’re the ones we’re seeking to help,” Alexander said, noting that includes about 350,000 people in his home state.

“I have to say that after seven years of intense partisanship on these issues, which would lead everyone to believe there was no hope for Republicans and Democrats to come together and work to strengthen our health care, I’m really pleased with this common ground we’ve been able to find,” Murray said on the Senate floor.

President Trump’s decision last week to end subsidies to insurance companies that were allowed under the ACA revived congressional talks. The Trump administration argued — and initial court rulings backed it up — that the payments were illegal because they had not been appropriated by Congress, which has the constitutional authority to spend the government’s money. Although the 2010 health care law required insurers to provide discounts to some low-income consumers and said the government would reimburse them, without authorizing the spending.

The Alexander-Murray proposal would appropriate those subsidies for two years, and tie them to permanent changes to the law that give states more flexibility to seek waivers from the Health and Human Services Department from the ACA’s requirements. It would also allow insurances companies to sell less comprehensive plans to all customers, not just those under age 29 as is the case under current law.

The nonpartisan Congressional Budget Office estimates that without the subsidies, premiums will go up, the deficit will rise and up to 16 million Americans could live in counties with no insurance providers at all.

“Unless they are replaced with something else temporarily, there will be chaos in this country and millions of Americans will be hurt,” Alexander warned.

Alexander said Trump has been privately encouraging of the talks, but the president cast doubts on the legislation this week by suggesting it was a “bailout” for insurance companies that he could not support. However, the bill’s sponsors counter that the legislation requires that the subsidies go directly to the consumer to keep premiums down.

The bipartisan bill has potentially critical GOP support from Sens. Susan Collins of Maine, Lisa Murkowski of Alaska and John McCain of Arizona. The trio played a defining role in the defeat of previous GOP health care bills this year. It also has the backing of Sens. Lindsey Graham of South Carolina and Bill Cassidy of Louisiana, who have competing legislation to dismantle the ACA and replace it with a block grant system to the states.

GOP backers say the bill does not pre-empt the party’s ongoing effort to end Obamacare but rather buys time to keep working on legislation that can muster enough support to pass Congress. Conservatives have balked at Alexander-Murray as a tacit admission that Obamacare will remain the law of the land. House Speaker Paul Ryan said through a spokesman Wednesday that the speaker believes the Senate should remain focused on legislation to end Obamacare, not prop it up.

The proposal puts the GOP in a bind between the policy necessity to act to protect millions of Americans from premium hikes and the political necessity to continue to keep up its effort to dismantle the current system. An August poll from the Kaiser Family Foundation found that 60 percent of Americans think Trump and Republicans in Congress are responsible for what happens to the ACA in the future.

Senate Majority Leader Mitch McConnell has not taken a position on the bill, but he is unlikely to bring something to the floor unless it has Trump’s support and the 60 votes needed to clear a potential filibuster, which it should if all 48 Senate Democrats support it along with the 12 Republicans who have signed on. The legislation crowds an already limited legislative calendar. It would need to become law before the end of the year when Congress needs to pass a spending bill package to keep the government running. That spending bill would be the vehicle to fund the insurance subsidies.

Along with Alexander, Collins, Murkowski, McCain, Graham and Cassidy, the additional GOP co-sponsors include Sens. Mike Rounds of South Dakota, Joni Ernst and Chuck Grassley of Iowa, Bob Corker of Tennessee, Richard Burr of North Carolina and Johnny Isakson of Georgia.

The Democratic co-sponsors joining Murray include Sens. Angus King, independent of Maine, Jeanne Shaheen and Maggie Hassan of New Hampshire, Joe Donnelly of Indiana, Amy Klobuchar and Al Franken of Minnesota, Heidi Heitkamp of North Dakota, Joe Manchin of West Virginia, Tom Carper of Delaware, Tammy Baldwin of Wisconsin and Claire McCaskill of Missouri.

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Augustin Mawangu Mingiedi, Bandleader Of Konono No. 1, Dies At 56

Augustin Mawangu, bandleader of the Grammy-winning Congolese band Konono No. 1, died on Monday, Oct. 16.

Vera Marmelo/Courtesy of Konono No. 1
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Vera Marmelo/Courtesy of Konono No. 1

Augustin Mawangu Mingiedi, leader of the Congolese group Konono No. 1, died on Monday, Oct. 16 after a months-long illness related to complications from diabetes, a representative for the band confirmed. He was 56 years old.

Konono No. 1 was founded between 1965 and 1968, by his father, Mingiedi Mawangu. After the elder Mawangu’s death in April 2015 at the age of 85, Augustin Mawangu Mingiedi became the group’s leader. Now a third member of the family, Augustin’s son Makonda, will take the reins of the celebrated group. “We are devastated,” the band wrote. “But Konono No. 1 are indestructible.”

Augustin’s instrument, like that of both his father and his son, was an amplified version of the likembe, a handheld instrument sometimes referred to as a “thumb piano” (and also known elsewhere as the mbira or karimba, among other names). It is played by plucking metal tines connected to a resonator board. Mingiedi Mawangu electrified the instrument using found parts, yielding a mesmerizing distortion that Westerners compared to the sounds of experimental rock and electronic music.

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“At the beginning, my father went very often to collect car parts like springs, wire, metal discs, old car alternators, magnets … all that sort of stuff, as well as the wood, which he used to make the likembe,” Augustin told the BBC in a 2015 profile.

Only decades after the group’s founding did it release its first album, 2004’s Congrotronics, recorded in Kinshasa for the Belgian label Crammed Discs. It was the result of a long search by Belgian producer Vincent Kenis, a zealous fan of Congolese music who first traveled to the country in 1971, making regular trips there over the following three decades.

“Only in 2000, I found a Konono fan club,” he said in a 2006 interview with Afropop. “I left a note.”

In that same interview, Mingiedi Mawangu said of Kenis’ search: “Konono was playing in villages in different places, and parties for a long time. That’s why Vincent couldn’t find me. We didn’t stop. We kept playing. But you had to know where we were, exactly where we were playing. Even if you asked people, they wouldn’t tell you. You had to know my address.”

In a statement sent to NPR, Kenis wrote, “On the footsteps of his father the great Mingiedi, founder of Konono No. 1, likembe virtuoso Augustin Mawangu acted as a pionneer by enhancing the instrument’s expressivity with electronic devices and new techniques, with stunning effects. His brilliant and bold playing, his stage presence, his humor and high spirits graced many projects …. It’s a great honor for me to have worked with him.”

The release of Congotronics led to the group touring the world and collaborating with artists like Björk, on her song “Earth Intruders” from the 2007 album Volta. The attention culminated in a nomination for best traditional world music album at the 2007 Grammys for the group’s record Live At Coleur Café, and a 2010 Grammy Award for best pop collaboration with vocals, for playing on Herbie Hancock’s The Imagine Project.

“To me,” Augustin Mawangu told the BBC, “it’s like you’re planting seeds which are useful, and that everybody loves. It’s like leaving a mark — it’s a feeling of joy.”

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President Of Rio's 2016 Olympic Bid Is Charged With Corruption

Brazil’s Olympic Committee chief, Carlos Nuzman, resigned from his post after being arrested on Oct. 5. He’s seen here coming to the Brazilian Federal Police building in Rio de Janeiro for questioning on Sept. 5.

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Federal prosecutors in Brazil are charging former Brazilian Olympic Committee President Carlos Nuzman with helping to run a criminal organization and other crimes, in a scheme that paid for the votes that brought the Olympics to Rio de Janeiro last summer. The evidence includes undeclared assets in the form of 16 gold bars.

Nuzman was arrested on Oct. 5, prompting him to resign as president of Brazil’s national Olympic committee. Prosecutors announced charges against him that range from corruption and money laundering to evading foreign currency laws.

From Rio, NPR’s Philip Reeves reports for our Newscast unit:

“Brazilian and French authorities believe the 75-year-old was a key player in a scheme to channel $2 million to a former member of the International Olympics Committee — Lamine Diack from Senegal — to help ensure that Rio was elected as the venue for the games.

“They accuse Nuzman of having undeclared assets in Switzerland, including 16 gold bars, each weighing a kilo. Nuzman has denied any wrongdoing, and says he’s been unjustly implicated in the scandal.”

Prosecutors say Nuzman was an important part of a criminal operation that also included wealthy businessman Arthur Cesar de Menezes Soares Filho and Rio’s former governor, Sérgio Cabral, who was sentenced to 14 years in prison this summer.

When Rio was chosen to host the 2016 Games, the city beat out rivals such Tokyo, Madrid, and Chicago. As NPR’s Howard Berkes reported back in 2009, “Chicago garnered just 18 of 94 votes in the International Olympic Committee’s selection process.”

Before he was arrested this month, Nuzman had been an honorary member of the International Olympic Committee and a member of the coordination commission for the 2020 Olympic Games in Tokyo.

The IOC’s executive board removed Nuzman from those roles. It also provisionally suspended the Brazilian Olympic Committee — with the clarification that the country’s athletes can still participate in the upcoming Pyeongchang 2018 Winter Games.

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