Alice Jo DeFries winced when she read recently that Linda Sosa had come to Lawrence from Japan to care for her terminally ill brother.

“That was such a sad story,” DeFries said. “I thought it was a shame she had to come all that way because there isn’t a hospice house in Lawrence.”

Sosa’s brother, Geoffrey Guzicki, died July 8 at his home.

After reading the Journal-World story, DeFries wondered whether Guzicki knew that rather than having his sister make the trip from Japan, he possibly could have stayed at the hospice house in Topeka, just 20 miles away.

Run by Midland Hospice Care, the 18-bed facility serves a 19-county area that includes Douglas County.

“It’s a very comfortable place, and we have beds available,” said DeFries, a member of Midland Hospice Care’s governing board.

Douglas County Visiting Nurses Assn. wants to start a hospice house in Lawrence, a project expected to cost between $2 million and $3 million.

But the availability of Midland Hospice Care’s house raised questions about the project:

Patsy Waller of Topeka sits reading a book to her husband, Tom Waller, as caregiver Judy Allen checks in on the couple at the Midland Hospice in Topeka. With the Topeka hospice just 20 minutes away, some questions have been raised about the need for a new hospice house in Lawrence.

• Why go to the trouble of building a house here? Why not send Douglas County residents there?
• If Douglas County is in Midland Hospice Care’s coverage area, shouldn’t it, rather than VNA, be calling the shots?
• If VNA builds a hospice house, what’s to stop Midland Hospice from building one, too?

Working together

Both VNA and Midland Hospice Care are aware of the questions.

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“I think we should work together,” said Midland Hospice Care executive director Karren Weichert. “We’ve visited some with (VNA) about it. They’ve toured our facility. We’re willing to share whatever expertise we may have.”

Though Midland Hospice Care has an office and patients in Lawrence, Weichert said she and her board had no interest in opening a house in another hospice’s back yard.

“That’s not what we’re about,” she said. Both agencies are nonprofits.

VNA executive director Jan Jenkins shares that understanding. “I’ve not heard anything different,” she said.

Jenkins said data showed Lawrence could support a 16-bed hospice.

“Our plan is to open eight beds with the ability to go to 16 beds as needed,” she said, noting she has been interviewing consultants wanting to guide VNA through the planning and fund-raising processes.

Jenkins said a few individuals and companies had offered to donate land for the project.

The bulk of the house’s services would be financed by Medicare, Medicaid, insurance and private payments.

Lawrence’s own need

It’s nice, Jenkins said, that Douglas County residents have ready access to a hospice house in Topeka, but it’s fast becoming clear Lawrence needs it own facility.

“People want to be in their own community,” she said. “Family and friends are so important at this time in a person’s life, they need to be close by, so, for example, they can come on their lunch hour.”

But it’s also true that, depending on a person’s whereabouts, getting across Lawrence could take as long as driving to Topeka.

“Close is always better,” Weichert said. “But at the same time, some of that is perception. We may be 20 miles away, but, really, it doesn’t take that long to get here.”

Still, Weichert says the need for a hospice house is present in every mid-size community.

“There aren’t the caregivers today that there were 25 to 30 years ago,” she said. “Nowadays, just about everybody has to work, and families are far more mobile. Sons and daughters move away — New York, Chicago, California — while their parents age in place. It can be incredibly difficult for them to get back for any length of time.”

Dying with dignity

But the need for a hospice house is Lawrence is not driven solely by convenience. It’s about a person being able to die with dignity and helping families cope with the burden of those deaths.

“The demands placed on caregivers is tremendous,” said Nadereh Nasseri, a nurse with VNA’s Hospice Care in Douglas County. “There is so much to deal with physically and to sort through both emotionally and spiritually. It takes a big toll.”

Midland Hospice Care has lessened the toll for Patsy Waller and her husband, Thomas, both of Topeka.

“Thomas has a disease that’s very similar to Lou Gehrig’s disease,” Patsy Waller said. “He’d been in a wheelchair for six years when it got to the point where I couldn’t take care him of him home.”

Thomas Waller’s doctors have said he has less than six months to live.

“Being here has been wonderful for us, really wonderful,” Waller said. “The care here is excellent. That’s important, but there’s an end-of-life philosophy here that’s just as important. It’s different from a hospital or a nursing home; it’s very comforting.”