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Amid For-Profit Surge, Rural Hospice Has Offered Free Care for 40 Years

Rose Crumb, a mother of 10 and a devoted Catholic, founded the Volunteer Hospice of Clallam County four decades ago. (Dan DeLong for KHN)

PORT ANGELES, Wash. 鈥 Rose Crumb can鈥檛 even count the number of people she鈥檚 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.

鈥淥h, hundreds,鈥 estimates Crumb, the woman who almost single-handedly brought hospice care to this remote Pacific Northwest city nearly 40 years ago.

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

鈥淸Rose] let people know hospice is not all about dying,鈥 said Bette Wood, who manages patient care for VHOCC. 鈥淗ospice is about how to live each and every day.鈥

In a nation where Medicare pays for hospice care, and nearly two-thirds of providers are for-profit businesses, the tiny Washington state agency is an outlier.

Since 1978, the hospice founded by Crumb 鈥 a mother of 10 and devoted Catholic 鈥 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, 鈥淩ed鈥 Crumb, who died in 1984 of leukemia, was an early patient.

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

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.

Since 1978, the Volunteer Hospice of Clallam County has offered free end-of-life care to residents of Port Angeles, Wash. (Dan DeLong for KHN)

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

There was pressure in the early years to 鈥渢ake the money,鈥 as Crumb put it. But she had little use for the regulations that accompanied federal Medicare reimbursement

鈥淚t was our experience that we could operate on a much smaller budget and we could be more flexible in providing services,鈥 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.

Eve Farrell holds a portrait of her husband, Daniel, in her Port Angeles, Wash., home. Daniel died on Jan. 15, 2017, of complications of COPD 鈥 chronic obstructive pulmonary disease. (Dan DeLong for KHN)

Patients don鈥檛 have to meet Medicare鈥檚 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.

鈥淚 don鈥檛 know how I would have made it without them,鈥 said Eve Farrell, 82, whose husband, Daniel, had chronic obstructive pulmonary disease, or COPD. He at age 80 after four months of hospice care at the couple鈥檚 Port Angeles home.

Staffers helped her husband shower when she couldn鈥檛 lift him, offered advice about medication and gave her breaks from relentless caregiving.

鈥淲e felt like Dan was the only patient they had,鈥 Eve Farrell said.

Crumb was drawn to hospice care in the 1970s, after the book 鈥淥n Death and Dying鈥 by Dr. Elisabeth K眉bler-Ross galvanized conversations in the U.S. about how to treat the terminally ill. Years earlier, when Crumb鈥檚 father was diagnosed with lymphoma, she helped him die at home.

鈥淚t was the most meaningful experience in my nursing career,鈥 she said.

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

鈥淓verything clicked,鈥 she recalled. 鈥淚 thought 鈥榊es!鈥欌

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.

鈥淪ome of the doctors called us 鈥榯he death squad,鈥欌 Crumb said. Crumb鈥檚 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.

Bette Wood is patient care manager at the Volunteer Hospice of Clallam County. 鈥淸Rose] let people know hospice is not all about dying,鈥 Wood says about Crumb. 鈥淗ospice is about how to live each and every day.鈥 (Dan DeLong for KHN)

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

鈥淚n my view, they were clearly misrepresenting the current status of the law,鈥 recalled Patrick Crumb, 55, who is now president of the AT&T Sports Network. 鈥淚 told them, 鈥業f you do what you鈥檙e threatening to do, I鈥檓 going to sue you and I鈥檓 going to win.鈥

Lawmakers eventually agreed to create an exemption to state law that allows volunteer hospices to remain unlicensed and unregulated. Crumb鈥檚 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鈥檇 serve 70 percent of the local hospice market within two years.

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

鈥淚t was a bit of an awkward time,鈥 he said. 聽鈥淎ssured hospice wanted to be a successful business. And Volunteer Hospice was going to negatively impact their chances of being a successful business.鈥

鈥淲e don鈥檛 have oversight from the government, but we have minute oversight from the community,鈥 says Astrid Raffinpeyloz, volunteer services manager and community outreach committee co-chair of the Volunteer Hospice of Clallam County. (Dan DeLong for KHN)

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

鈥淭hey tread lightly up there because of Rose,鈥 Emerick said. 聽鈥淩ose is a beloved person in that community.鈥

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

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

Emerick and other hospice industry officials said volunteer hospices don鈥檛 offer the range of services required of those who receive federal funding. And, Emerick added, there鈥檚 little oversight.

鈥淭hey don鈥檛 have a reputation of negligence or complaints as far as I鈥檓 aware, but there鈥檚 always the possibility of that when they鈥檙e unlicensed or unregulated,鈥 she said.

But Astrid Raffinpeyloz, VHOCC鈥檚 volunteer services manager, said the hospice wouldn鈥檛 have lasted long in a small town if there were problems.

鈥淲e don鈥檛 have oversight from the government, but we have minute oversight from the community,鈥 said Raffinpeyloz.

Mike Clapshaw poses with a picture of himself and his wife, Deborah, in his Port Angeles, Wash., home. (Dan DeLong for KHN)

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 . She was 60. For the last four months of her life, VHOCC staff eased her pain 鈥 and his.

鈥淚t was always, 鈥榃hat can I do to help?鈥欌 he said.

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

鈥淪ome people just need someone to listen to them,鈥 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鈥檚 not worried about her final days.

鈥淚鈥檓 all signed up for hospice,鈥 she said. 聽鈥淚 have everything written down.鈥

KHN鈥檚 coverage of end-of-life and serious illness issues is supported by聽.

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