Tagged End Of Life

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

PORT ANGELES, Wash. — 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 this remote Pacific Northwest city 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 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)

That’s rare, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization, NHPCO, an industry 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 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.

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)

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.

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)

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.”

“We don’t 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 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 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 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 by The Gordon and Betty Moore Foundation.

Categories: Aging, Public Health

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Dementia Patient At Center of Spoon-Feeding Controversy Dies

An Oregon woman with Alzheimer’s disease, whose husband claimed she was kept alive with spoon-feeding against her written wishes, has died.

Nora Harris, 64, died early Wednesday at the Fern Gardens senior care center in Medford, Ore. Her husband, Bill Harris, said the death marks the end of an eight-year battle with the progressive, debilitating disease, which included an unsuccessful court fight to withdraw all food and liquid.

“It is a blessing and a relief,” he said.

Nora Harris, a librarian and scholar who was diagnosed with early-onset Alzheimer’s disease at age 56, had drafted an advance directive that called for no measures to prolong her life, including artificial nutrition and hydration.

Her husband contended that the document covered oral assisted feeding, too. He went to court last year to force staff at the center to stop spoon-feeding Nora, saying the practice violated his wife’s wishes and her advance directive.

“Nora never wanted to live like this,” said Bill, 76, a retired tech worker.

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However, a local judge denied his request, siding with the state’s long-term care ombudsman who said state rules to prevent abuse required the center to offer residents three meals each day and provide help eating, if needed. That practice continued in recent weeks, even as Nora’s kidneys failed and she became bed-bound.

“I had to struggle with everybody all the way through to the end to try and respect her wishes,” Bill said.

The controversy turned Nora Harris into a central character in an ongoing debate over advance directives and dementia. At issue is whether patients with Alzheimer’s and other progressive diseases can stipulate in advance that they want oral food and liquid stopped at a certain point, hastening death through dehydration.

It’s a controversial form of what’s known as VSED — voluntarily stopping eating and drinking — a small but growing practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, usually resulting in death within two weeks.

“The right to VSED is reasonably well-established, but it’s when a person isn’t competent that’s the issue,” said Paul T. Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., who has written extensively on the topic.

Unlike medical aid-in-dying, VSED doesn’t require a law or a doctor’s approval. But the question of whether it’s possible for people who can no longer actively consent to the procedure remains ethically and legally unclear. That’s especially true for patients who open their mouths to accept food and fluids, as Nora Harris did until her last days.

“VSED is a unique exit option,” said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. “This is probably the least discussed option. We don’t have statutes, we don’t have regulations, we don’t have a court case.”

Advocates for VSED contend that, with proper medical support, it can result in a peaceful death that allows patients control over their own fate. Critics say the practice amounts to torture and that it will lead to starvation of elderly, disabled and mentally ill people.

Advance directives that tell caregivers to continue or withdraw artificial nutrition and hydration provided through feeding tubes or IV lines are common. Most don’t mention assisted oral feeding, however.

Nearly two dozen states have laws that address assisted feeding, including many that specifically prohibit withdrawing oral food and fluids. Other states address only artificial feeding or are unclear or silent on the issue.

Just one state — Idaho — appears to sanction withdrawal of assisted feeding by a health care proxy “in accordance with a valid directive,” according to a July analysis compiled by Charles Sabatino of the American Bar Association.

But Idaho state law also prohibits any form of assisted suicide and requires “comfort care” for patients if artificial nutrition and hydration is withdrawn. It’s not clear whether a request to halt assisted feeding would be honored, said Robert Aldridge, a Boise lawyer who has worked for years to shape Idaho’s Medical Consent and Natural Death Act.

“Assisted feeding is a somewhat limited situation if the patient is not competent,” Aldridge said in an email.

With more than 5.5 million people living with dementia in the U.S., questions about stopping assisted feeding are becoming more common, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying.

“Increasingly, this is going to be an issue,” she said. “The people I talk to are much more afraid of Alzheimer’s than they are of cancer. They are afraid of being stuck for years in a nursing home in a diaper.”

The doctor overseeing Nora Harris’ case, Dr. Karen Kahn, called the situation “one gigantic gray zone.”

On one hand, research shows that “feeding somebody with end-stage dementia will not prolong their life,” said Kahn. On the other hand, if a patient accepts food and swallows it, “it should be incumbent on them to feed her,” she added.

Bill Harris said he sat for three hours on Tuesday afternoon watching as Nora took tortured breaths. She died at 1:32 a.m., he said.

“What the court case did a year ago in July was they condemned her to the full gamut of the disease,” he said.

He said he’ll continue to push for changes to state law to allow people with dementia to stipulate in advance if they don’t want assisted feeding.

“From my perspective, the way the laws are written now, they do not respect people with dementia,” he said.

When Nora Harris was diagnosed with Alzheimer’s in 2009, she made arrangements to donate her brain and spinal cord tissue to the University of California-San Francisco, medical school for research.

“She didn’t want anyone else to go through what she did,” Bill Harris said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Categories: Aging

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In Oregon, End-of-Life Wishes Are Just A Click Away

Just four hours earlier, Sallie Cutler had been sharing Mother’s Day lunch with her mom, Alyce Cheatham.

Then, that same evening, Cheatham, 96, landed in a Portland, Ore., emergency room, lethargic, unable to speak and paralyzed on her right side by a massive stroke.

Cutler now admits her first impulse was to demand action.

“It’s, like, do something; make her better,” said Cutler. “As a child, you can’t just say let her die.”

But Cheatham’s medical records contained a different demand. When the doctor on duty at Oregon Health and Science University clicked once in the chart header, it was immediately clear: Cheatham wanted no efforts to prolong her life.

“He said, ‘The good news is, your mom had a POLST form, so you don’t really have any decisions to make,’” recalled Cutler, 63, of Sherwood, Ore.

“I was so relieved. I cannot tell you how relieved I was. She had made all the decisions for me ahead of time.”

POLST forms, formally known as Physician Orders for Life Sustaining Treatment, have become a staple in care for the fragile or seriously ill. They document in detail what kind of medical treatments patients want — or don’t want — at the end of life. Nearly every state in the U.S. has a program; dozens are established or developing.

But in Oregon, where the documents were developed in the early 1990s, organizers have taken a step to ensure that final medical wishes are honored.

Officials at OHSU have partnered with a California technology firm, Vynca, to allow health care providers to electronically find any of the 172,000 active forms in Oregon’s POLST registry with a single click, no matter where they were filed.

Since the link went live June 1, OHSU providers have clicked nearly 14,000 times, said Dana Zive, the registry’s director.

“It’s not just in the ER setting,” Zive said. “It’s actually any health professional, in any setting.”

Previously, OHSU providers had access to the 16,000 POLST forms filled out by patients within the hospital system, but not those submitted elsewhere. The hospital, which tops the state list in the annual U.S. News & World report rankings, reports more than 1 million visits from nearly 300,000 patients each year.

Now, during any of those visits, the information is easy to see at the top of the patient’s medical record, said Dr. Susan Tolle, director of the OHSU Center for Ethics in Health Care and a co-founder of the state’s POLST program.

“POLST forms only work if health care professionals can find these orders quickly, especially in an emergency,” she said.

Expanding OHSU’s electronic capability is the first step toward universal, instant access to the forms by health systems across the state. Samaritan Health Services, a nonprofit network of hospitals and clinics in Portland and the surrounding area, plans to add the feature later this year. And Oregon officials are negotiating with additional vendors to expand accessibility, Tolle said.

The state’s Oregon Health Authority pays about $380,000 a year to run the POLST registry. The cost of the electronic expansion is paid by the hospitals, however. Neither hospital officials nor Vynca representatives would reveal the price tag, saying it was proprietary information.

Research suggests that POLST forms guide end-of-life care, whether patients die at home or in a health care facility. A 2014 study of deaths among Oregon POLST users found that 6.4 percent of patients who specified comfort-only measures died in a hospital, compared with 44.2 percent of those who chose full treatment — and 34.2 of people with no POLST form on file.

A recent analysis found that seriously ill patients in Oregon are more likely to have their end-of-life wishes honored than those in nearby Washington state — or the rest of the U.S.

Still, it’s been difficult to ensure immediate access to POLST forms and other advance care planning documents in emergency settings, said Dr. Ryan Van Wert, a critical care physician and chief medical officer for Vynca.

“The problem is, if you come into an ER in distress and you’re unable to speak for yourself, the default is we do everything,” he said.

So, sick or frail patients who don’t want CPR or intensive care might receive aggressive treatments against their will, simply because medical personnel couldn’t find the forms.

Oregon is the first state with one-click access to POLST registry forms. New York, which uses forms called Medical Orders for Life Sustaining Treatment, or MOLST, has a different system, a web-based application that allows completion of and access to forms at sites statewide.

Amy Vandenbroucke, executive director of the nonprofit National POLST Paradigm, said individual states are still figuring out what works.

“We’re still very much in an innovation stage,” she said. “Right now, we don’t have any guidance to say what is the best way to do it.”

For Alyce Cheatham, however, OHSU’s easy access to her POLST form ensured her wishes were followed. After the stroke last May, she returned to her Portland retirement home, where she died a week later.

“She didn’t want any kind of life support at all,” Cutler, her daughter, recalled. “She didn’t want to be on any feeding tubes at all.”

Being able to determine her care was important to Cheatham, an independent, forceful woman who was active in many Portland civic groups and projects, including development of the POLST program. Over the years, she contributed more than $500,000 to the center that developed it, records show.

“She was very excited about the POLST form,” Cutler said. “There’s a symmetry to it. It’s good that it worked so well.”

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

Categories: Aging, Health Industry, Public Health

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