By Todd Cohen
GASTONIA, N.C. — In 1979, to help serve a parishioner who was dying and wanted to stay at home, the Rev. Robin Johnson of All Saints Episcopal Church in Gastonia enlisted volunteer nurses and other volunteers to provide the end-of-life home care the parishioner wanted.
Two years later, after learning about the formation in Winston-Salem of what is now Hospice & Palliative Care Center, the first Hospice in North Carolina, Johnson and the nurses founded Hospice of Gaston County.
Now, Gaston Hospice has raised over $4 million for the Robin Johnson House, a 12-bed facility that is scheduled to open in August and will be the nonprofit’s first in-patient facility.
Gaston Hospice is not alone: To meet rising demand for residential and in-patient services, Hospices in the Charlotte metro region are developing new facilities.
“People are wanting to come,” says Mike Linker, executive director of Hospice of Union County. “If they cannot die in their home environment, they want an alternative that is as close to that as possible.”
The nonprofit, which in 1994 opened a 6-bed Hospice House in Monroe, the first residential facility for Hospice care in North Carolina, and added eight beds in 1996, has begun the quiet phase of a campaign to raise $4.2 million for a new 12-bed facility scheduled to open in July 2008.
And Hospice & Palliative Care Charlotte Region has raised $10.6 million for its 16-bed Levine & Dickson Hospice House, which is scheduled to open in Huntersville in January, will be the first free-standing Hospice care facility in Mecklenburg County and could grow to 48 beds over five to 10 years.
“We know there are patients who cannot be cared for at home and need an alternative such as a Hospice facility,” says Janet Fortner, president and CEO of Hospice & Palliative Care Charlotte Region.
Formed in the U.S. in 1970s, the Hospice movement traditionally has provided services to patients where they live, including homes, nursing homes and assisted-living communities.
Delivering those services are interdisciplinary teams that focus on clinical, spiritual and emotional care, as well as advanced-care planning and bereavement support for families.
Home care has been the core focus of Hospices, but as the population has grown older and more aware of alternative end-of-life options, and with a decline in the number of multi-generation households in which younger family members can care for older relatives, demand for residential and in-patient Hospice care has grown.
“With the population aging, we need more alternatives within Hospice to care for those at the end of life,” says Fortner.
Residential and in-patient care, she says, provides “better continuity of care for those we already serve.”
“Residential care” provides a substitute for home-care patients who cannot return home for the last days of life, either because their condition has worsened or they lack caregivers in the home to support them.
“In-patient care” provides temporary placement for hospital patients returning home for the final months of life, or for home-care patients who need a few days of in-patient care because of a change in their health or care-giving situation.
Emily Craig, communications specialist for Gaston Hospice, says residential and in-patient facilities are needed for a variety of reasons.
Many patients cannot get care at home because no family members are available to act as caregiver, or because the caregivers may be elderly or frail themselves.
If caregivers are not available, Hospice must place patients in nursing homes, Craig says, but nursing homes themselves may have fewer available beds because of growing demand from a population that is quickly growing older.
And many patients may prefer the private rooms that Hospices can offer, she says.
In focusing on home care, their core service, Hospices over the years can develop the expertise and organizational infrastructure they will need to expand their services to include residential and in-patient care, Fortner says.
Designed to provide a comfortable, homelike setting, Hospice residential and in-patient facilities provide each patient with a single room that can accommodate family members who want to spend the night.
Hospice facilities typically provide from half-a-dozen to dozens of beds, compared to hundreds of beds typically provided at a nursing facility, and can offer more staffing per patient than can nursing facilities, Linker says, as well as interdisciplinary care teams and end-of-life expertise.
Hospice facilities are attractive to patients because they are “structured like a non-institutional, home-like, caring environment,” Linker says.
And the care Hospice provides is “holistic,” he says. “It recognizes that we’re not in the business of extending life or shortening life but making every day as high-quality and as greater-purpose as possible.”
PAYING FOR GROWTH
While Hospices depend on Medicare and Medicaid reimbursements to cover most of their costs, Medicare provides no coverage for room and board for residential care and Medicaid provides only partial coverage, Fortner says.
So in addition to the need to conduct capital campaigns to pay for building residential and in-patient facilities, individual Hospices depend on private contributions to help cover the full cost of providing residential and in-patient care and maintaining their patient facilities.
“Community support will continue to be important,” Fortner says.