The Covid-19 pandemic has spurred an increase in the percentage of Californians dying at home rather than in a hospital or nursing home, accelerating a slow but steady increase that dates back at least two decades.
The latest spike in home deaths began in 2020, the first year of the pandemic, and the rate has continued to rise, outpacing the tight congestion in hospitals and nursing homes that may help explain the initial shift. Nearly 40% of California deaths during the first 10 months of 2022 occurred at home, up from about 36% for all of 2019, according to death certificate data from the California Department of Public Health. By comparison, data from the US Centers for Disease Control and Prevention show that about 26% of Californians died at home in 1999, the earliest year for which data on home deaths is accessible in the public database. of the agency.
The trend is reinforced among Californians with serious chronic illnesses. About 55% of Californians who died of cancer did so at home during the first 10 months of 2022, compared with 50% in 2019 and 44% in 1999. About 43% of Californians who died of Alzheimer’s disease in the first 10 months of 2022 did so at home, compared to 34% in 2019 and nearly 16% in 1999.
Nationwide, the percentage of deaths occurring at home also jumped in 2020, to 33%, then increased to nearly 34% in 2021. Statewide data for 2022 is not yet available.
The early, deadly spread of Covid across California does not by itself explain the rise in the death rate at home; the vast majority of people who have died from Covid died in a hospital or nursing home. Instead, medical experts said, the surge — at least initially — appears to coincide with sweeping policy changes at hospitals and nursing homes as caregivers struggle to contain a virus both virulent and little understood.
Comprehensive bans on personal visits to hospitals and nursing homes, even to the bedside of dying patients, created an agonizing situation for families. Many chose to move a loved one home. “It was devastating to have mom in a nursing home and die, and the only way you can see mom is through the window,” he said. Barbara Karnesa registered nurse who has written extensively about end-of-life care.
At the same time, fear of exposure to Covid led many people to avoid hospitals in the early years of the pandemic, in some cases neglecting treatment for other serious conditions. This, too, is thought to have contributed to the increase in deaths at home.
Those who specialize in end-of-life care say it’s no wonder the trend has continued even as visitation policies have eased. They said more people just want to die in a comfortable, familiar place, even if it means not fighting for every second of life with medical intervention.
“Every time I ask, ‘Where do you want to be when you take your last breath?’ Or when your heart beats its last beats?’ No one ever says, ‘Oh, I want to be in the ICU’ or ‘Oh, I want to be in the hospital’ or ‘I want to be in a skilled nursing facility.’ Everyone says: ‘I want to be at home,'” he said John Tastadcoordinator for the advance care planning program at Sharp HealthCare in San Diego.
Meanwhile, doctors who specialize in diseases that tend to kill Americans, such as cancer and heart disease, have become more receptive to discussing hospice at home as an option if treatment alternatives are likely to mean painful sacrifices in quality of life. .
“There’s been a bit of a culture shift where maybe oncologists, pulmonologists, congestive heart failure doctors are referring patients to palliative care earlier to help with symptom management, advanced care planning,” he said. Dr. Pouria Kashkouliassociate medical director for hospice at UC Davis Health.
The trends have created a booming industry. In 2021, the California Department of Health Care Access and Information listed 1,692 licensed hospice agencies in its tracking databaseup from the 175 agencies it ranked in 2002.
That much growth – and the money behind it – has sometimes led to problems. or Investigation 2020 by the Los Angeles Times found that fraud and quality-of-care issues were common in California’s hospice industry, a conclusion supported by a subsequent state audit. Governor Gavin Newsom signed a bill into law in 2021 which placed a temporary moratorium on most new hospice licenses and sought to curb questionable kickbacks to doctors and agencies.
However, when done right, home hospice can be a comfort to families and patients. Hospice usually lasts anywhere from a few days to a few months, and while services vary, many agencies offer regular visits from nurses, health aides, social workers, and spiritual counselors.
Most people who use hospice are insured through the federal Medicare program. The amount Medicare pays varies by region, but is usually about $200 to $300 a day, he said. Dr. Kai Romerochief medical officer at the non-profit organization Hospice from the Gulf.
To find quality care at the end of life, Andrea Sankarprofessor at Wayne State University and author of “Dying at Home: A Family Guide to Caregiving,” recommends researching nonprofit providers and preparing a list of questions: How often will nurses visit in person? Under what circumstances do patients have access to a doctor? What help will be available for a crisis in the middle of the night?
While hospice providers provide essential guidance and support, families must be prepared to shoulder the bulk of the care. “It really takes a fairly evolved family system to be able to come together to meet all the needs,” said Tastad at Sharp HealthCare.
Some end-of-life experts said they expect the percentage of Californians choosing to die at home will continue to rise, citing a number of factors: Medical advances will make it easier for patients to receive pain management and other palliative care in home; telemedicine will make it easier for patients to consult doctors from home; and two powerful forces in American health care—insurance companies and the federal government—increasingly see dying at home as an affordable alternative to long hospital stays.
Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.
This story was produced by KHNwhich publishes California Healthlinean editorially independent service i California Health Care Foundation.
