FARGO — Betsy Dodds felt comforted nearly two years ago, knowing her dying sister was spending her final days under care of hospice, in a place that felt like home.
Dodds, from West Fargo, was nearly 250 miles away from her sister, Cindy Pejsa, in South Dakota.
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Pejsa, 46, had an aggressive form of breast cancer and didn't want to die in a hospital, nor did she want her family's last memories to be of her dying at home in her bed.
Instead, she went to Ava’s House — an inpatient Sanford hospice facility in Sioux Falls with a home-like atmosphere, where family members could stay with her before she died less than two weeks later.
“It’s how she wanted to live her last days,” Dodds said.
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This hospice care option isn’t available in North Dakota, believed to be the last state in the nation to offer it. Currently, patients can receive care at home from a family or friend with assistance from a hospice provider, or receive hospice care in an institutional setting such as a hospital, nursing home or assisted living facility.
But new choices may be coming to the table in North Dakota — choices that are already available in South Dakota, Minnesota and Montana.
Hospice of the Red River Valley is raising funds and developing a freestanding hospice home in Fargo just off of 52nd Avenue South. It would have 18 beds and offer round-the-clock nursing care in a home-like setting with gardens and a pond outside.
This week, the Rockstad Foundation announced plans to build a residential end-of-life facility in Bismarck, pending approval from the state legislature.
The 12 twin-home facility with a $35 million price tag would open in 2025. It would also feature homey amenities and 24/7 care through a third party hospice provider.
On Monday, the Senate Industry, Business and Labor Committee heard testimony on senate bill 2226 that would create a new chapter in the Century Code to permit such residential end-of-life facilities to be licensed by the North Dakota Department of Health.
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Sen. Dick Dever, a Republican from Bismarck and bill sponsor, said the original concept received pushback from hospice organizations in the state.
They wanted to ensure they have a seat at the table when it comes to drafting administrative rules governing such facilities, according to Stephen Astrup, counsel for Hospice of the Red River Valley in Fargo.
“That’s the demographic of patients we know exceptionally well,” Astrup said.
There was also early confusion and discussion about what exactly a residential end-of-life facility is.
While a hospice home is the provider of hospice care, a residential end-of-life facility would not provide the care directly, but allow each patient to choose their hospice provider.
Terry Rockstad, founder and president of Rockstad Foundation, said they’re not trying to encroach on other hospice providers.
“Our intent is to supplement (their work) with a facility,” Rockstad said.
Medicare covers hospice medical services, durable medical equipment and drugs for pain management, but would not cover “room and board” for someone staying in a residential end-of life care facility.
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However, Rockstad Foundation member Kilee Harmon said if their fundraising campaign is successful, they’d be able to defray costs for 35% of their guests in the first year of operation.
The aim would be to cover 100% of those room and board costs down the line, through an endowment, Harmon said.
“This is just a beautiful thing. It gives people another option that is currently not provided,” she said.
Dodds is in favor of having more options for delivery of hospice care in North Dakota, in multiple types of settings.
It was a relief, she said, for hospice providers to be the caregiver, and for her sister and family to concentrate on simply being together in those final days.
“They lifted a burden from us,” she said.
