The last stage of Parkinson’s disease takes a terrible toll. Muscles turn so rigid the body can’t move. Dementia wipes out memories and the ability to talk. Patients can’t do anything for themselves.
As Bill Giesler suffers through this, his wife, Shirley, watches. She knows what he wants as death approaches.
So she found a place for him in Wells House, a hospice unit that opened last year at Beechwood Continuing Care in Getzville. The separate hospice unit at the nursing home focuses on pain and symptom relief among other services for those near death.
For Giesler, 81, a once-vibrant aerospace engineer, there will be no chaotic trips to the hospital, and he will not be hooked to machines by a tangle of tubes.
Built to feel like a home, Wells House contains art deco furniture, a country kitchen, a four-season sun room, private rooms and a living room with a fireplace, bookshelves and a piano.
Too often, terminally ill patients do not die how or where they want.
While a nursing home may seem like a natural place to manage pain and avoid futile treatment at the end of life, doing so can be a challenge. Costs, government regulations, institutional cultures and family demands get in the way.
“Nursing homes are not really prepared to deal with death,” said Helena Temkin-Greener, a researcher at University of Rochester Medical Center who studies palliative care in long-term care facilities.
One-quarter of deaths occur in nursing homes, and the figure will increase significantly as the number of elderly in the country increases, she said.
That’s why places like Wells House have begun to emerge as an alternative for those who are dying – a break from the traditional practice in which nursing facilities contract with hospice agencies for hospice doctors, nurses and social workers to visit individual residents in their rooms.
Wells House, one of six such units to open in the last two years in Western New York, collaborates with Hospice Buffalo.
Patients like Giesler need a prognosis of six months or less to live to qualify for Medicare’s hospice benefit. Shirley Giesler placed her husband in Wells House in the spring when she could no longer care for him in their Getzville home.
“He seems content,” she said of her husband.
“With Parkinson’s, I always knew what the end game was going to be, so why not make it as comfortable as possible?” Giesler said while giving a tour. “This is the way to live until you can’t live anymore.”
Bringing in hospice
For hospice agencies, the units represent a way to gain a better foothold in nursing homes.
In addition to the Beechwood unit, Hospice Buffalo has opened units at Delaware Nursing and Rehabilitation Center in Buffalo and in the past month at Brothers of Mercy Nursing & Rehabilitation in Clarence. Hospice Buffalo will also open a unit this fall at Schofield Continuing Care in Kenmore.
Medicare’s hospice benefit covers an array of services, including doctors, nurses, social workers and spiritual support. Hospice Buffalo contracts with 48 nursing homes to provide the services. But officials say the arrangements work with varying success, partly because of the challenges of mixing different staffs and determining at the facilities the residents who have six months or less to live.
“In nursing homes, that’s a difficult conversation to have with residents and families, and it’s a difficult prognostication to make,” said Dr. Christopher Kerr, chief medical officer of Hospice Buffalo.
Hospice Buffalo sees the special units as the “best translation” of its services in nursing homes, Kerr said.
Among other benefits, care can be provided in a more concentrated fashion by a team that includes hospice and nursing home personnel. Nursing home staff can train alongside hospice nurses. Families going through the same experience can interact.
At Beechwood, as at other facilities, separate hospice units reflect a strategy to broaden the accommodations and services offered.
Separate units can attract new residents and allow existing ones to stay until death, and eliminate the disruptions that occur when dying residents transfer to hospitals or hospice units elsewhere, said Daniel O’Neill, chief executive officer at Beechwood.
“The unit really is about new admissions here and helping people avoid the eleventh-hour admission to the hospital,” O’Neill said outside the entrance to Wells House, where a stone path passes a memorial garden.
Wells House includes 22 private rooms in addition to Beechwood’s 27 beds for rehabilitation and 223 beds for long-term care.
While nursing homes today provide rehabilitation, dementia and long-term care, their staffs often lack training in palliative care. So hospice agencies bring an expertise that often doesn’t exist at nursing homes.
“Nursing homes are not the best providers of end-of-life care,” said John Lomeo, chief executive of Niagara Hospice. “We can create an exceptional experience in a congregated unit.”
The McGuire Group opened the first unit in the region in 2012 when it worked with Niagara Hospice at Northgate Health Care Facility in North Tonawanda. Niagara Hospice also opened separate units at Odd Fellow & Rebekah Rehabilitation & Health Care Center in Lockport and the Schoellkopf Health Center in Niagara Falls.
Studies indicate that palliative care may help patients live longer in addition to improving the quality of their lives.
“There are dying people stuck in hospitals,” Kerr said. “We all pay for it, yet we have not figured out a way to get them into a lower level of care.”
Nearly nine of every 10 nursing homes in the nation hold contracts with hospice agencies, but experts call that a false sense of success. Only about one-third of the facilities have hospice enrollees at any given time, according to the National Hospice and Palliative Care Organization.
“There are a lot of nursing homes that don’t have palliative care programs and others that think they do,” said Temkin-Greener, the University of Rochester Medical Center researcher.
The special units constitute one of a handful of initiatives at nursing homes to treat pain and prevent unnecessary hospitalizations. For instance, the McGuire Group took a different route for its four nursing homes in Erie County by putting in place an in-house palliative care program last year.
Unlike hospice, which offers a defined set of services from end-of-life experts linked to a specific payment from Medicare, palliative care is a general term for care that focuses on improving quality of life as a person dies.
No rules dictate what services comprise palliative care. But McGuire’s residents who choose palliative care at no extra charge don’t have to give up Medicare skilled nursing coverage. Like hospice patients, they must forgo curative therapies, but not treatments for conditions unrelated to a terminal diagnosis. McGuire also can operate the program with its own staff, avoiding the problems that can arise when different care providers share the same patients.
“Our residents in the program stay with the staff they have grown used to,” said Barbara Johnson, coordinator of the Journeys Program.
The palliative care program reflects how some facilities address the problem. It promises services similar to hospice for residents with a “life-limiting” illness, a looser prognosis than hospice’s six-months-to-live requirement.
“This is for families of our residents who know that mom or dad doesn’t want to be recycled through the hospital. They want comfort care,” Johnson said.
Complicating the care
No publicly available measures exist for families to see how well facilities manage care at the end of life, if at all.
The system frequently fails dying patients for a host of reasons.
Many elderly people enter nursing homes on Medicare, the federal health program for individuals 65 and older. It provides rehabilitation coverage in a skilled-nursing facility for 100 days.
Patients could choose hospice services, which Medicare also covers, but the hospice reimbursement does not include room and board in a nursing home. That can run hundreds of dollars a day, a disincentive to use hospice.
Government regulations also emphasize rehabilitation and not palliative care. Nursing homes face potential penalties if dying residents get sick and lose weight or suffer from dehydration.
“Nursing homes are challenged by staffing shortages, high turnover, inadequate reimbursement for palliative care and an adversarial legal climate,” said Susan Miller, a health policy expert at Brown University.
These and other factors account for the rise in the use of intensive-care units in the last year of life even as hospice use has increased.
More patients are using hospice for short stays following hospitalizations, making hospice care too little and too late for patients to fully benefit, experts say.
The demands of patients and their families play a big role, too.
Hospitals contain the advanced technology and expertise to keep patients’ hearts beating and lungs breathing long enough to help them recover from serious illnesses and injuries. The same machines can futilely prolong death, causing suffering along the way, in patients with no hope of improvement.
“People’s expectations about the end of life can exist completely separate from reality. It’s those expectations that drive the use and type of care more than anything,” said Dr. Stephen Evans, medical director of the Terrace View Long-Term Care Facility on the Erie County Medical Center Health campus and an adviser to other nursing homes in the region.
Not just pain control
Hospice and palliative care attempt to attend to the mind and spirit – not physical just pain.
On a recent weekday at McGuire’s Harris Hill facility in Lancaster, a half-dozen residents in the Journeys Program sat in wheelchairs in a semi-circle as Theresa Hoffman and Rose Marie Carriero conducted the sort of nonmedical therapy session typically found in hospice and palliative care programs.
Hoffman, playing guitar, sang familiar songs like “Chattanooga Choo Choo” and “Take Me Out to the Ball Game.” Carriero distributed maracas, bells and other musical instruments, encouraged participation, sprayed lavender-scented mist and gently massaged residents’ hands with lotion.
Hoffman, who describes herself as a “sensory companion,” said she performs songs that attempt to connect with residents’ memories.
“Music marks moments in our personal histories,” she said.
At first, the residents sat in stony silence, with a few drifting off with chins on their chests. Hoffman and Carriero remained undaunted, eventually earning a smile here and there and even toe-tapping. A few people began to sing along or shimmy in their chairs.
“It soothes your heart,” one woman said of the music.
In another session, Hoffman played “I Left My Heart in San Francisco,” and a resident who had suffered a stroke and could no longer speak swung his arms with his wife as if dancing to the song. It was the first song they danced to when they met. The wife, tears in her eyes, thanked Hoffman for playing something that meant so much to the couple.