By JoNel Aleccia
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 Port Angeles 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 (VHOCC).
“[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.
“I don’t know how I would have made it without them,” said Eve Farrell, 82, whose husband, Daniel, had chronic obstructive pulmonary disease, 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.
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.
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.”
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KHN’s coverage of end-of-life and serious illness issues is supported by The 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.
