Hospice house would ease dying days, help caregivers

The house envisioned is one where people could come to die in peace.

Older people with cancer whose spouses aren't able to care for them at home. Younger people with AIDS who haven't told their families they're sick, much less dying. People with terminal illnesses who would prefer dying in a home setting rather than a nursing home.

The Hospice Alliance of Hampton Roads has been meeting for six months to see how such a place could become a reality.

Currently, local hospice services help people with end-of-life care in their own homes, or sometimes in long-term-care facilities.

As the population ages, though, there are more instances where a spouse or relative isn't able to care for a family member at home. The patient, though, often prefers a homelike setting rather than a hospital or nursing home for pain management and for help relieving other symptoms.

According to the National Hospice and Palliative Care Organization, there were about 450 free-standing or hospital-based hospice units in the country in 2007.

Although most people receiving hospice care live at home - 70 percent - a growing number are receiving end-of-life care in a hospice, according to the national group. That percentage increased from 17 percent in 2006 to 19 percent in 2007.

The hospices - both the free-standing ones and those based on a hospital campus - usually provide breaks for families who are caring for relatives at home, or when pain is too difficult to manage.

Debra Price, who works for a hospice service, Medi Home Health & Hospice, helped start the local alliance. Though she learned of the need through her work, the alliance is a nonprofit agency that isn't affiliated with the service where she works.

Price said the organization's first goal is to educate the community about hospice care and provide resources for families while it builds a base of community support.

Second, the organization would like to open a homelike facility where relatives of people who are dying could stay while they are visiting.

Finally, the group envisions a hospice house where people can spend their last days, or a place where the terminally ill can stay for a short period to give families a break from caregiving.

Price estimates the effort could take five years and $5 million to reach fruition. The alliance is having its first fundraiser Saturday.

The Hampton VA Medical Center has a hospice unit, but it is limited to veterans. There are some free-standing hospices in Northern Virginia. Closer to home is the Hospice House, a four-bed facility that opened in Williamsburg in 2002.

That residence grew out of a community-based organization of professional and lay volunteers that was founded in 1982. The organization raised $1 million to open the home. Unlike most free-standing hospices, it provides free services.

People who stay there continue to be served by a hospital or home-health hospice program of their choice, but are able to stay at the homelike residence for free. Volunteers support family members and provide any needed supplies.

Teresa Christin, director of development for Hospice House, said demand has continued to grow since it opened, and the home stays full most of the time, serving 25 to 30 people a month.

Members of the Hospice Alliance of Hampton Roads believe a metropolitan area the size of Hampton Roads is overdue for a similar facility.

Marilyn Fall is president of Elder Care at Home Inc., and The Caregivers, a Virginia Beach agency that helps families navigate elder issues and live safely in the community as they age.

As this community ages, Fall said, there will be increasing demand by people who either don't have family or whose relatives aren't able to care for them, either financially or physically.

Stacie Walls-Beegle, executive director of ACCESS AIDS Care Center in Norfolk, said younger people with terminal illnesses could benefit from a free-standing hospice. Many of the AIDS patients the center advocates for are younger and live alone. "Young people don't want to go to a nursing home."

Price said one challenge will be getting all the players in the hospice community to come together. Both for-profit and nonprofit agencies work with the aging population and people with disabilities, but haven't had much occasion to work together.

She said people involved in hospice work often have to go to corporate officials or board members to get permission to speak or get involved in an effort, which has made rallying advocates difficult.

But she hopes an effort for a free-standing hospice would be something people across agencies could work together on as volunteers: "Sometimes we have to look at ourselves as a community."

Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com