Hospice Scrambled During Wildfires to Evacuate Patients Determined to Die at Home

Even when the fires threatened her home in downtown Sonoma, the elderly woman inside refused to leave. Smoke was everywhere. Her caretaker begged her to heed the mandatory evacuation order.

Another woman on the outskirts of town said all the young people telling her to get out were just “making hay” over nothing.

“They didn't want to leave because they wanted to die in their home,” said Karna Dawson, a social worker with Hospice by the Bay. "They didn't want to leave because they didn't realize the severity of the problem. They didn't want to leave because they were stubborn.”

At critical moments, when the worst wildfires in state history were ravaging Wine Country, Dawson and other members of the hospice team had to intervene in several such standoffs with terminally ill clients.

“Some people were feeling like if they were going to die they wanted to die in their house, and [were] not really thinking that through very clearly,” she said. “We're not talking about dying of your cancer. We're talking about dying in a fire. And those are two very different deaths.”

When the fires broke out Oct. 8, nurses and staff with Hospice by the Bay were providing home care, pain management, and spiritual counseling to 108 patients in Napa and Sonoma counties. Half of those patients had to be evacuated.

Under federal rules, hospice agencies that receive payment from the Medicare program are required to have a disaster plan in place for their patients, including how to get bed-bound patients out of their homes.

Dawson was at work, enacting the plan, by 4 a.m. on Oct. 9, as the fires exploded across the area. She sat huddled over her laptop at home in Petaluma, wearing her grey pajamas and tattered pink bathrobe. She was talking on two phones at once, trying to find all their patients and ordering ambulances.  In some cases, once the ambulances picked up the patients, they just drove away from the fires, to get to safety. The hospice staff had to figure out where exactly they had gone .

“It was just a moving target of where people were going and where they were landing,” said Wendy Ranzau, the hospice’s chief operating officer.

For many patients, the first stop was a Red Cross evacuation shelter. This required hospice leaders to adjust their goals, while still trying to fulfill the mission of providing patients an opportunity to die with dignity.

“Our priority was to make sure that we did not have a patient die in an evacuation center,” Ranzau said. “So even if they can’t die at home, they’re going to die someplace other than a cot in an auditorium.”

Within two days, the hospice had safely relocated all of the patients, even ones who had temporarily ended up in shelters. Some patients went to live with relatives all over the state, from  Citrus Heights in the north,  to Santa Barbara down south. Some were resettled in assisted living or skilled nursing facilities, with Hospice by the Bay dipping into its reserves to pay the fees, something the Medicare program does not require.

But there were a couple of hold-outs who found the shelters surprisingly hospitable.

“There was one gentleman who didn't want to leave the shelter. He had lived alone and he was loving the attention. He thought it was great,” Dawson said. “It took us 24 hours and the medics saying 'You can't really stay here.'”

Many patients were eventually able to return to their homes. But Ranzau predicts some never will. Either their homes burned down, or there’s no power,  or because the are too medically fragile tosurvive another move. One patient lost five pounds in the week after the fire started.

“When you think about hospice, our median length of stay is about three weeks,” Ranzau said. “A week in the life of a hospice patient, unfortunately, is a third of their time on hospice. So it just doesn't make sense. You know, is a trauma of transferring again, too much for them?”

That means some patients will not have the death they planned, making them a tragic piece of the overall hospice trend: 70 percent of Californians say they want to die at home, but only 32 percent do. Now the Sonoma woman with cancer, whose dying wish was to spend her final days in her own house, will die in a nursing home.

“She’s okay. She’s okay,” Dawson said uncertainly, when asked about her status a week after the fires began. “She’s adjusting.”

For most of their patients, there just isn’t enough time to adapt to all the changes.

“I, or you, can have six months or a year to process this and think it through,” she said. “We can have another fall that's pretty and recover. Where they might not, and likely won’t.”