Building hospice homes catches on nationwide
Community involvement is crucial
About one in five hospices in the United States operate an inpatient facility or residence, and the number of hospice homes is growing, hospice officials say.
"You do find more folks starting to think about offering a residential facility to serve their communities," says Jon Radulovic, spokesman at the National Hospice & Palliative Care Organization (NHPCO) in Alexandria, VA.
"The needs of patients and families at the end of life are sort of changing, and they're more complex than they probably were 30 some years ago when hospice began as a predominantly grass-roots movement," he says.
While the hospice goal remains to keep people at home, challenges arise when patients' symptoms can't be controlled at home or when caregivers are in need of respite assistance, he notes.
Also, hospices increasingly are serving patients with diseases other than cancer, including Alzheimer's disease, heart disease, and combinations of illness, Radulovic says.
"Our statistics show that in 2003, for the first time, end of life patients with a cancer diagnosis dropped below 50% to 49%," he reports. "These other serious illnesses can be more complex, and people may have symptoms that are harder to manage at home."
Plus, hospice patients with noncancer diagnoses may not follow as predictable of an end of life trajectory, so their needs will vary, Radulovic notes.
"The more comprehensive the range of services a hospice offers, the better equipped it is to meet those evolving needs of dying Americans," he says. "And having an adequate inpatient facility can be one of those ways to meet those evolving needs."
Another factor contributing to the hospice home trend is the changing nature of American family dynamics, says Ted Williams, CFRE, executive director of the Hospice Foundation of Lake and Sumter in Tavares, FL, which has plans to break ground in November and December for two residential hospice homes. The foundation already has funded 12-bed hospice home that opened two years ago.
"The family used to take care of their loved ones, and I can remember my own family taking care of my grandparents," Williams says. "But we're double-income families now, and I hate to say it, but we don't have the time."
Also, hospitals used to provide several beds or a wing for hospice units, but fewer hospitals can afford the space, Williams adds.
"In addition, people are living longer, to their 80s or 90s, and the caregiver or spouse may be too frail to consider looking after loved ones even if they'd like to," Williams says.
Also, while many hospice patients want to die at home, others prefer to be removed from the home near the end, says Donna Shafar, RN, patient care supervisor for The Villages (FL) Hospice House.
So a welcome alternative is a hospice home where the facilities often are new, well furnished, and comfortable, but have round-the-clock care for residents in their last weeks or days, she notes.
Hospice homes often provide respite care or symptom control for short-term stays of patients who want to remain at home during their end-of-life, but sometimes need additional help, Shafar says.
"We transition patients from the hospital to here," she says. "A lot of times, patients are very sick in the hospital, and they'll come here for a few weeks and maybe then transition to their home."
About 80% of the hospice home's referrals come from the hospital, and usually these patients will stay in the home, Shafar adds.
"Clinicians with patients who are very ill and whose life expectancy is very limited try to send them to us so the family can spend quality time with them in our facility, rather than their being in the hospital," she explains.
'Field of Dreams'
Residential and inpatient hospice care has been an unmet need for some time, reports Debbie Flippin, RN, MBA, CHPN, vice president and director of the Kate B. Reynolds Hospice Home of the Hospice and Palliative CareCenter in Winston-Salem, NC. The hospice home, which opened eight years ago with 20 beds, expanded to 30 beds at the end of June.
"It's been like the 'Field of Dreams,'" she says. "Build it, and they will come."
When the hospice first built the hospice home, administrators had no idea how well it would be supported by the community, but it has stayed at full capacity, Flippin says.
"About 60% of our patients come to us having never been in a hospice home care program, and that's a population that would never have been served by hospice without the home," she says.
"Most of the home's patients come from the acute care setting, and while cancer still is the primary diagnosis, the home also sees heart and chronic lung conditions," Flippin adds.
NHPCO's data show that about 52% of hospice homes are freestanding, while 19% are in hospitals and 5% are in nursing homes. Also, the data indicate that 43% provide acute and general inpatient care as well as residential and routine care, while 34% provide acute care and 23% provide residential care.1
1. Beresford L. Hospice inpatient facilities extend the continuum of end-of-life care. Newsline June 2005; 3-6, 50-51.