PORT ANGELES, Wash. Rose Crumb cant even count the number of people shes 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 this remote Pacific Northwest city nearly 40 years ago.
But the actual number of deaths she has witnessed is likely far higher and Crumbs 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 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 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.

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)
Thats rare, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization, NHPCO, an industry trade group. Most of the nations 4,000-plus hospices receive Medicare payments for their services. He estimates there are only a few volunteer hospices like Crumbs 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
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.

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 chronic obstructive pulmonary disease. (Dan DeLong for KHN)
Patients dont have to meet Medicares 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 dont know how I would have made it without them, 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 couples Port Angeles home.
Staffers helped her husband shower when she couldnt 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 K羹bler-Ross galvanized conversations in the U.S. about how to treat the terminally ill. Years earlier, when Crumbs 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. Crumbs 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. [Rose] let people know hospice is not all about dying, Wood says about Crumb. Hospice is about how to live each and every day. (Dan DeLong for KHN)
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 youre threatening to do, Im going to sue you and Im going to win.
Lawmakers eventually agreed to create an exemption to state law that allows volunteer hospices to remain unlicensed and unregulated. Crumbs 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 theyd 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.

We dont have oversight from the government, but we have minute oversight from the community, 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.
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 dont offer the range of services required of those who receive federal funding. And, Emerick added, theres little oversight.
They dont have a reputation of negligence or complaints as far as Im aware, but theres always the possibility of that when theyre unlicensed or unregulated, she said.
But Astrid Raffinpeyloz, VHOCCs volunteer services manager, said the hospice wouldnt have lasted long in a small town if there were problems.
We dont have oversight from the government, but we have minute oversight from the community, 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 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 shes not worried about her final days.
Im all signed up for hospice, she said. I have everything written down.
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