For people who are terminally ill and homeless, a “good death” with hospice care often is out of reach.
Homeless people with cancers or other illnesses that pose an imminent threat to their lives typically wind up in emergency rooms, where they are treated for their symptoms and released back to the streets. They die in alleyways and on sidewalks, curled on park benches, or inside tents at river encampments.
Soon, an alternative may be available to people who are facing death within weeks or months and have no place to go for care. A group led by a retired associate professor in the UC Davis School of Medicine is planning to open one of the nation’s first hospices for homeless men and women.
The privately funded project is called Joshua’s House, after founder Marlene von Friederichs-Fitzwater’s grandson, Joshua Lee, who died on the streets of Nebraska in 2014 at age 34.
Von Friederichs-Fitzwater, also a professor emeritus at California State University, Sacramento, is in the process of purchasing a building near the Loaves & Fishes campus on North C Street where terminally ill homeless people could be discharged from hospitals and receive comfort care until their deaths. Her nonprofit organization, the Health Communication Research Institute, will oversee the project, which quietly has been in the works for more than a year.
“I feel Joshua with me every day,” von Friederichs-Fitzwater said of her grandson, who died of a drug overdose. Before his death, she said, he shared many stories about friends with terminal illnesses who took their last breaths outdoors. “He wanted to do something for them,” von Friederichs-Fitzwater said. “I believe he is helping me open some doors.”
The project has received support from Mayor Darrell Steinberg, City Councilman Jeff Harris and County Supervisor Phil Serna, among others. Former Loaves director Sister Libby Fernandez sits on its board. HomeAid Sacramento, the building industry’s charitable arm, has signed onto the project, an alliance that could significantly reduce costs, said the group’s executive director Beth Kang. A local architectural and legal team are donating their services.
Sacramento hospitals also have pledged support, contributing money and agreeing to refer patients to Joshua’s House and provide hospice care on a rotating basis, said von Friederichs-Fitzwater. Care for those who are without health insurance or resources would be covered by the hospital groups.
“It’s a big need in our community, and we’re pleased to be a part of it,” said Sandy Sharon, senior vice president and area manager for Kaiser Permanente in Sacramento, which has invested $114,000 in the project.
Patients who are in the last stages of life from conditions including lung disease, AIDS and cancer sometimes have severe pain. Hospice care, which usually is provided in the home, offers them pain relief and comfort until their deaths.
Sharon said homeless patients who are terminally ill pose a unique challenge for hospitals. Kaiser attempts to find placement and hospice care for those who have no place to live, she said, but beds are not always available, especially for people who are without health insurance. Sometimes, Sharon said, such patients decline efforts to place them in nursing facilities or care homes.
“Think about how badly you would feel if you were that ill and did not have the comfort of a bed, a bathroom, warmth, and were left to die alone,” Sharon said.
Von Friederichs-Fitzwater said she began thinking about the need for a project like Joshua’s House while working at UC Davis, where among other things she developed support programs for newly diagnosed cancer patients.
“I was shocked to learn that many patients with whom I was meeting were homeless,” said von Friederichs-Fitzwater, herself a cancer survivor. “They had nowhere to go for hospice care.”
It was her grandson’s death three years ago that spurred her to begin working toward the possibility of a hospice for homeless people in Sacramento.
Von Friederichs-Fitzwater’s research revealed that only a handful of hospice programs for homeless people exist in the United States, none of them in California. She visited a groundbreaking program in Salt Lake City, and began talking to elected officials and other community leaders about starting a similar one in Sacramento. She interviewed more than 100 homeless men and women about health care, hospice and their priorities should they become terminally ill, and began drafting a plan for Joshua’s House.
Joshua’s House organizers are hoping to raise about $800,000 for purchase of the C Street building, an empty warehouse that spans about 11,000 square feet. They hope to open Joshua’s House in the fall of 2018, should they successfully clear various regulatory and construction hurdles and gain planning and City Council approval.
The home, as depicted in architectural renderings, will have 16 to 20 beds and feature private rooms, an indoor garden, skylights, a library, a chapel and a kitchen. Guests will have access to a wide variety of programs beyond direct health care, including art and music therapy. They will be able to keep their pets, and the program pledges to find homes for the animals after their companions die.
Three UC Davis graduate nursing students are working to develop policies and procedures for running the hospice program, said Debbie Ward, a health sciences clinical professor in the Betty Irene Moore School of Nursing at the university.
“They are looking at all kinds of things that are essential for running a hospice home like this,” including rules about medication management, privacy concerns and handling conflicts between clients, Ward said.
Ward called von Friederichs-Fitzwater, who holds a master’s degree in public health and a doctorate in communications studies, “an incredible community advocate” who is trying to fill a critical gap in care.
“When you think about people who are simply crawling away to die, you have to believe there should be an alternative,” Ward said. “This is another option, a really important one.”
According to a recent report, one homeless person each week dies in Sacramento County. About 40 percent of them die outdoors, said the report by the Sacramento Regional Coalition to End Homelessness. The leading cause of death of homeless men and women is alcohol and drug abuse, but 27 percent die from “natural” causes, including heart disease and cancer, according to the report.
In addition to offering an alternative to death on the streets, the hospice program likely will reduce health care costs, supporters said. Hospice care “keeps terminally ill people out of hospitals and emergency rooms,” Craig Dresang, CEO of Yolo Hospice, said in a letter of endorsement of the project. “Simply put, it is better care for a fraction of the cost.”
Kang, of HomeAid, said her agency “is fully committed” to Joshua’s House. HomeAid is brokering resources from builders and their trade and business partners to help push the project forward, she said.
“Marlene is doing everything right,” Kang said of Joshua House’s founder. “We are committed to building places that give people dignity and hope, even if that hope is simply to achieve a peaceful end to life. We want to be involved in projects like that.”