Her impending death is inevitable, though unpredictable. The best her family can do is make sure her last days are as comfortable as possible.
Which is why they brought her to Village Health Care Center, a highly respected, award-winning long-term care facility located near Community Medical Center on South Avenue West, conveniently close to her daughter's home.
More than a year after Cianciotto Belgarde was admitted to the facility, she experienced “a pretty dramatic change in her health,” her daughter remembered.
It was a change for the worse. Her family began thinking about hospice care.
Hospice is a comprehensive service provided to patients who are expected to die within six months, although given the unpredictable nature of death, patients can sometimes remain eligible for hospice services for several years. Hospice agencies are certified to administer medical and palliative care, as well as to provide emotional support for patients and their loved ones.
In Missoula, Partners in Home Care and Hospice of Missoula are the two agencies that provide hospice care to physician-referred patients in their homes, in hospitals and in three local long-term care facilities.
But not in Village Health Care Center. For years, Village administrators have kept their doors closed to hospice workers, preferring instead to provide residents with their own in-house care.
“What we have chosen to do at Village is not to outsource our end-of-life care,” explained DeAnn Smallwood, the longtime administrator of Village Health Care Center.
Smallwood feels the facility does an excellent job meeting its residents' end-of-life needs. She is proud of Village's specially trained staff, top-notch equipment and home-like accommodations. A former hospice volunteer herself, Smallwood said hospice does provide much-needed services - it's just that Village would prefer to offer those services itself.
Its end-of-life program parallels hospice in many ways, she said, and offers residents the additional benefit of continuity of care.
Kent disagrees. She says her mother's deteriorating condition warrants the care of a licensed, certified hospice service, which Village does not have. Furthermore, she said, the staff at Village - while certainly well-trained and dedicated - simply doesn't have the necessary training or extra time to spend with her mother.
Village's end-of-life program, she said, is lacking many key services that would benefit not only her mother, but also her family.
Smallwood pointed out that residents who prefer hospice services are free to move to one of the other nursing homes in Missoula. The Minneapolis-based Goodman Group and Sage Company, which own and oversee Village, also manage Hillside Manor Nursing Home and Riverside Health Care Center, as well as other long-term care facilities in Montana and other states. They offered to move Kent's mother to another facility in Missoula free of charge.
But Kent says she had no idea hospice isn't allowed at Village - and if she had known, she would never have allowed her mother to be admitted to the facility. Now, she says, it's too late to move her. The stress of relocating to unfamiliar surroundings and adjusting to entirely new staff would be too much.
And it's important, Kent said, that all the residents of Village - not just her mother - be allowed access to hospice services when the time comes. She is speaking up, she said, on their behalf.
She's not the only one.
Kathy Cloninger's mother, Ann Hoolahan, is 92 1/2 years old and has Parkinson's disease. She too was admitted to Village just under two years ago, and she too is slowly slipping away. A few months ago, Hoolahan's doctor informed her family she did not have much longer to live.
Cloninger asked about hospice care and was told her mother could not receive it at Village.
Like Kent, Cloninger was not aware hospice was unavailable at Village Health Care Center. Like Kent, she was offered the option of moving her mother to another facility in Missoula that does allow hospice services, and like Kent, she turned the offer down.
“She is not at a place where we would feel comfortable moving her,” Cloninger explained. “My mom needs continuity of care. She has spent 17 months in the place she's in now. Why should my mom have to move?”
About a month ago, Hoolahan was taken off her medications. For the last five weeks, she has been receiving comfort care at Village. Her family is amazed she has lingered for so long.
Usually, end-of-life care at Village would mean a move to a private room typically reserved for residents whose death is imminent. Hoolahan's family wants her to stay in her own room, amid familiar surroundings.
While her disease has left her unable to communicate, Cloninger's mother is cognizant and lights up whenever she has a visitor, her daughter said. However, her inability to communicate has made it difficult for her to make friends.
If hospice were allowed, it could provide volunteers to spend time with her, to get to know her and understand her. As it is, Cloninger serves as her go-between much of the time.
Village staff members do the best they can, she said, but they have a lot of other patients to care for.
“Especially at the end of a life, shouldn't there be someone who can just sit there and hold her hand?” Cloninger asked. “My feeling is, there has to be - there has got to be a lot of fear and loneliness knowing you're at the end of a life.”
“My mom didn't want to go into a nursing home in the first place,” she added. “I was hesitant to come forward about this. I genuinely appreciate the nurses and CNAs that care for my mom, and how hard they work. This isn't about them at all. It's about choice.”
Village Health Care made the decision to provide its own end-of-life services roughly 10 years ago, Smallwood said.
During that time, she added, the center has continued to receive referrals from physicians who like its comfort care program and apparently consider it a worthy alternative to hospice.
“This is a highly skilled facility,” she said.
Village offers 24/7 medical coverage, as well as regular check-ins, and its staff is specially trained to deal with bereavement and end-of-life issues, Smallwood said. They are more than happy to sit for a while and just visit if need be.
Village staff members also feel it's important to meet the needs of family and friends, Smallwood said. The facility's end-of-life rooms are private rooms capable of accommodating large groups of loved ones, who are welcome to stay as long as they like. And while Village doesn't offer formal grief counseling, it does refer families to other counseling groups in Missoula.
Village staff members include speech and occupational therapists, physical therapists and a full-time dietician. It employs two full-time social workers, Smallwood said, and has a well-trained pain management team that reviews every resident, as well as a 24-hour, on-call pharmacy consultant.
“We feel we do a wonderful job managing pain,” Smallwood said. “We've really invested in this.”
In fact, Village buys all its own equipment - a rarity in long-term care.
All this is in keeping with the center's overarching philosophy of wanting to provide the best-possible continuum of care, Smallwood said. Village sets its standards high, she said, and works hard to exceed them.
But if hospice enters Village, it relinquishes control of those standards, she explained. When hospice comes in, it directs care for the patient. Hospice staff develop their own plan of care, bring in their own staff, use their own equipment.
Long-term care facilities are strictly regulated, Smallwood noted. They are subject to unannounced surveys by a state agency at any time, and can be cited for such minor infractions as misplaced paperwork or mesh privacy curtains with holes of the wrong diameter. They are also expected to meet more subjective standards - such as waiting an “appropriate” length of time after knocking before entering a resident's room.
Even so, Village boasts one of the lowest deficiency ratings in the state.
“This building has had perfect surveys, and that's rare,” Smallwood said.
Smallwood, a two-term president of the Montana Healthcare Association, is very aware of the rules and regulations governing long-term care facilities. She is certain Village's decision not to allow hospice is well within both ethical and legal guidelines.
“There is no law that nursing homes have to have hospice,” she stated. “It's optional.”
Indeed, no law explicitly states that any facility in Montana is legally obligated to allow hospice care.
“The bottom line is there is no rule requiring nursing homes to have hospice in their facility,” said LaDawn Whiteside of the state Department of Public Health and Human Services' quality assurance division.
There is, however, some question about the enforcement of residents' rights. According to state and federal law, long-term care residents have the right be informed of their health-care choices and the right to choose their own care, among others.
“I just know in my heart that my mom's rights mean something, and the rights of those residents mean something,” Kent said. “I just think it is so grossly unjust to deny them those rights.”
Kent and Cloninger contend Village did not fully inform them about end-of-life services at the facility, and is now preventing their mothers from choosing their own care.
It has been standard procedure at Village for years that, whenever a new resident is admitted, staff go over all available services with the family, Smallwood said. It's possible that the facility's end-of-life care program was not fully explained, she said, or that Kent and Cloninger didn't pay full attention. She pointed out that it is, after all, a highly emotional time for most families.
This may be a simple matter of miscommunication, she said.
After Kent complained to Village administrators, every resident received a written form explaining that the facility does not provide hospice, but that it does provide end-of-life and comfort care. That is now a part of standard admitting procedure, Smallwood said.
In any case, state regulators have concluded that a resident's right to choose her own care extends only to the services offered within that facility, explained Kelly Williams, administer of the Montana senior and long-term care division of the Montana Department of Public Health and Human Services.
If residents choose services that are outside their area, or are otherwise unavailable, they do not have a “right” to those services, she said.
“If the choice is not available in that facility they have the right to choose another facility,” she said.
It's not as simple as that, countered Shawna Starkey, a former ombudsman for Missoula Aging Services.
“It's actually a very complicated question,” Starkey said. “Residents' rights state they can choose their own provider, they can choose their own care. The reason we're at this point now is there's no teeth to that.”
A nursing home resident who qualifies for hospice care and lives in a region with no less than two hospice facilities would seem to have a choice, she said. The facility in which the resident resides, she said, is not automatically granted the ability to make that choice for them.
“It's certainly not a black-and-white issue, by any means,” said Casey Blumenthal, vice president of extended care services at the Montana Hospital Association. “It's more of an implied right or expectation than something in writing. It's something you'd hope they would do, because it's not just the actual hands-on, bedside services - there's a whole host of ancillary services that go with hospice.”
A lawsuit would likely settle the matter, but Kent isn't eager to make her family a test case.
“We're still weighing our options,” Kent said.
Families often feel some guilt about putting their loved ones in a long-term care facility, Smallwood said.
They feel like they should be the ones shouldering the entire responsibility for their care. She reassures them that they don't have to worry so much anymore.
If she felt there was anything a resident needed, she said, she would move heaven and earth to get it.
“That's our job,” Smallwood said. “Your job is to watch us to make sure we're providing that care.”
Meanwhile, Cloninger is spending every spare moment with her mother, knowing she could die in the next moment.
“We have been going through the end-of-life process with her for many weeks and it has been very depleting for me and my family,” Cloninger said. “That's why hospice would have been such a help right now - they could be walking us through the grieving process and giving us some relief from trying to be with her 24/7.”
She dearly hopes Village will change its policy and allow hospice services in time to help the next dying resident.
“It's too late for my mom,” she said.
While Cloninger spends her nights in her mother's room at Village, Kent's family is talking about how best to handle Cianciotto Belgarde's last days.
“Unless hospice is going to become accessible to the residents, we'll probably bring her home to die,” she said. “But this isn't just about my mom. This is about 100-plus people in a residence who will never be able to access something that could make a tremendous difference in their lives.”
Reporter Tyler Christensen can be reached at 523-5215 or tyler.christensen@lee.net
Hospice care meant to ease pain for dying and their families
Hospice care is something most people don't think about until they have to.
It is meant to ease the pain - both emotional and physical - experienced by people nearing the end of their lives, explained Maggie Darlington, manager of Partners in Home Care's hospice program.
A hospice patient must be referred by a physician and approved by the hospice agency's medical director. Once qualified for care, patients are typically treated using a team approach.
An RN is assigned to each patient as a case worker who will usually visit between one and three times a week, but must be available 24 hours a day. The nurse will consult and work with additional staff as needed, including physicians, pharmacists and volunteers. A non-denominational chaplain who specializes in end-of-life issues is also part of the team.
In addition to medical care, hospice offers education about the dying process, emotional support and grief counseling, said Bonnie Malcolm, a licensed clinical social worker at Partners. In fact, bereavement counseling is available for up to 13 months after a patient dies.
Hospice volunteers - people who spend several hours a week with a patient reading, listening or just keeping a vigil - are also an important part of hospice services, Darlington said. Partners lists about 35 active volunteers, and each typically spends two to three hours a week with a patient.
Hospice services, equipment and medication are covered by Medicare, Medicaid and most private insurance policies, said Kit Jackson, owner and director of Hospice of Missoula, which counts about 30 active volunteers. When hospice takes over a patient's care, Medicaid or Medicare covers the charge for room and board, medications, and equipment and other services related to a terminal diagnosis.
“It makes it easier on the families financially as well,” Jackson explained. “And it is known that for every dollar Medicare spends on hospice they save $1.50, too. So it's a cost-saving service that also provides the kind of end-of-life care people want.”
However, it is not uncommon for long-term care facilities to decline outside hospice services, said Jackson. She owns another hospice agency in Utah, where many nursing homes offer their own end-of-life programs.
The hospice workers in Missoula, she added, have a good relationship with all the local nursing homes and hospitals except Village Health Care Center, which has replaced hospice services within the facility with its own end-of-life program.
With capacity for 193 residents, Village is the largest nursing home in Missoula.
Hospice of Missoula, Jackson said, would love to see the lines of communication between Village and the city's hospice agencies open once more.
“It's an excellent facility,” Darlington said, “and we would love - love - the chance to work with them.”
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