Most people would prefer to die at home, but sometimes that can’t happen.
Stephanie Keeler, a Portland woman, suffered from a brain tumor. After a year of operations and chemotherapy, she tried to die at home in the company of her four children. But there was a problem:
“They just could not get her pain under control,” said Stephanie’s mother, Sheryl Greiner, a retired elementary school teacher from Newberg.
Greiner said her daughter was taken to Hopewell House, where staff was equipped with the tools and expertise to lower her pain, reduce her nausea and help her deal with the anxiety of leaving her young family.
Officially, Hopewell was a small hospital for the dying that closed in 2019. But the facility looks like a 12-bed old Portland mansion, surrounded by lush gardens. And it gave Stephanie a place to die in a way that’s just not possible for many patients, either at home or in larger hospitals.
Her children could visit for hours and play on the grounds. Lots of friends could come at one time, bringing food and sitting to reminisce. And Greiner didn’t have to serve as her daughter’s nurse anymore.
“It allowed me to be a mom,” she said. It allowed her friends and family to be there for her, not for keeping track of when the next dose was due.
Greiner’s daughter died in 2019, and she was one of the last patients before Hopewell House closed. Changes to Medicare and Medicaid had made it harder for physicians to justify inpatient hospice such as the kind facilities like Hopewell House provided. Improved pain technology also made it easier for people suffering from terminal conditions to spend their last days at home.
In strictly financial terms, Hopewell House and many inpatient hospice hospitals around the country are loss leaders. They don’t make money and are hard to justify in the current economic climate for health care providers.
But a group of supporters in Oregon is now raising money to reopen Hopewell. In the process, they’re hoping to offer Americans a better way to die.
A technical tweak, a big change
Many Americans die in hospitals or some type of nursing facility, where staff is more attuned to keeping people alive than giving them a peaceful death.
That needs to change, said Scott MacEachern a former volunteer at Hopewell House. He’s leading the effort to raise money to reopen Hopewell, even though it has closed twice already.
MacEachern and other volunteers provided a wide array of services for residents at the hospice. He would perform small but meaningful tasks, such as making grilled cheese sandwiches when patients got hungry, and bigger duties.
“I would hold vigil,” he said. “I would do postmortem ceremonies and wash bodies in preparation for families and with families.”
MacEachern, who has volunteered at several hospices and other health facilities, said Hopewell gave people a good death, not just somewhere to die.
He remembers one dying woman at a facility next to the interstate in Wilsonville. She shared her room with a patient who had a hip replacement.
“It was very distressing for her,” MacEachern said. “It was this barrage of people coming in and out. There’s still poking and prodding. People aren’t attuned to the end of life. She’s got this woman in the bed next to her, blaring her television, and it was just unsettling.”
MacEachern is now the co-executive director of the Friends of Hopewell House, a nonprofit working to save the facility. He’s a former Nike executive who helped create the Livestrong brand with cyclist Lance Armstrong. After that came to a sticky end, MacEachern decided to give back at Hopewell.
Now his team has come up with a way to put inpatient hospice homes across the country onto a more stable financial footing. “Sometimes innovation just comes in the smallest little tweaks,” he said.
Those “little tweaks” involve changing Hopewell’s license so it is no longer deemed a hospital, but a residential care facility instead. That means it would no longer be required to offer expensive services like a pharmacy, physicians or 24-hour registered nurse coverage, as required at a hospital.
“All of those rules and regulations that come with that just blow up your costs,” MacEachern said.
Instead, he said, Hopewell will just be somewhere dying people live.
“It’s the Airbnb of death and dying,” he said.
Instead of checking into a hospital, someone with a terminal condition would simply rent a room at Hopewell. More importantly, they would keep seeing their own visiting hospice doctors and nurses — just as if they’d never moved into Hopewell.
That way, Hopewell doesn’t have to bill Medicare, and it can have a smaller staff of caregivers and volunteers who collaborate with visiting hospice providers.
MacEachern believes there are other benefits: “You can’t light a candle when somebody dies when you’re accepting Medicare dollars,” he said. “You can’t bring a pet into the room when you’re accepting Medicare dollars.”
He’s hoping to create a place where everyone from the caregivers to the housekeepers is attuned to the fact that their patients are dying,
“It may be the housekeeper that’s in there, just tidying up the room, and that’s the moment when the person wants to talk,” he said. “And if that person isn’t attuned to the dying experience and just set down whatever it is that they’re doing, and be present in that moment, what a sacred moment that’s lost.”
The Medford model
The idea for Hopewell’s licensure tweak came from Celia’s House, an inpatient hospice home in Medford that had to try a similar change because the old model didn’t pencil out.
For the last three years, Celia’s has stayed financially stable, and the executive director, Susan Hearn, has now moved to Portland to be the new co-executive director at Hopewell.
She said the tweak is part of a whole movement to change the way we die, driven by baby boomers.
“I think they want to die differently than their more medicalized experiences of their parents,” she said.
So how did Celia’s House stay financially stable? Hearn explained that it worked with many different health insurances: from private pay and long-term care insurance to Medicaid and donations.
“At Celia’s House we cared for the wealthiest man in our community and many homeless people,” Hearn said.
Celia’s House also has an arrangement with Medford-area hospitals in which they pay for beds at Celia’s for people without health insurance, such as men and women experiencing homelessness.
“It’s a cost savings for the hospital. An acute care bed costs $2,000 to $3,000 a day,” Hearn said.
Instead of having a homeless person die in a hospital at a cost of $3,000 a day, the hospital pays Celia’s $400 a day to care for the patient.
It’s too soon to know whether Portland hospitals will be amenable to a similar arrangement at Hopewell. Legacy Health spokesman Brian Terrett said hospital leaders are open to discussion. He wishes Hopewell the best but said Legacy struggled to keep the home running.
“If they are able to find a model that works for that facility, you know we’ll be very happy for them,” he said.
Barb Hansen with the Oregon Hospice and Palliative Care Association said there are about 60 hospices around the state, and some are struggling. But she thinks Hopewell’s licensure change could be the answer many have been seeking.
“I do think it’s a good idea,” she said. “It will be a tremendous resource for the people in the greater Portland area.”
She’s not worried about what such a change would mean for patients. “The state will still keep tabs on it and do inspections for quality care et cetera,” she said.
Meanwhile, the Friends of Hopewell have raised $2 million and made Legacy an offer for the old mansion. The health system is expected to decide what to do next soon.