More and more Californians are dying at home. Another covid “new normal”?

The covid-19 pandemic has spurred an increase in the proportion of Californians dying at home rather than in a hospital or nursing home, accelerating a slow but steady rise that dates back at least two decades.

The recent upsurge in deaths at home began in 2020, the first year of the pandemic, and the rate has continued to rise, surviving the rigid closures in hospitals and nursing homes that could help explain the initial change. Nearly 40% of deaths in California in the first 10 months of 2022 occurred at home, compared to about 36% for all of 2019, according to death certificate data from the California Department of Public Health. By comparison, data from the United States Centers for Disease Control and Prevention shows that about 26% of Californians died at home in 1999, the first year for which data on deaths at home are available in the database. agency public.

The trend is amplified among California residents with serious chronic illnesses. About 55% of Californians who died of cancer did so at home in the first 10 months of 2022, compared to 50% in 2019 and 44% in 1999. About 43% of Californians who died of Alzheimer’s disease during of the first 10 months of 2022 did so at home, compared to 34% in 2019 and nearly 16% in 1999.

Nationally, the share of deaths occurring at home also jumped in 2020, to 33%, then rose to nearly 34% in 2021. National data for 2022 is not yet available.

The early and deadly sweep of Covid across California does not in itself explain the rise in home death rates; the vast majority of people who 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 in hospitals and nursing homes as caregivers struggle to contain a virus that is both virulent and little understood.

Sweeping bans on in-person visits to hospitals and nursing homes, even at the bedside of dying patients, have created an agonizing situation for families. Many have chosen to bring a loved one home. “It was devastating to have mum in a nursing home and die, and the only way to see mum is through the window,” said Barbara Karnesa registered nurse who has written extensively on end-of-life care.

At the same time, fears 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 rise in deaths at home.

Those who specialize in end-of-life care say it’s no surprise the trend is continuing even as visiting policies have eased. They said more people just want to die somewhere comfortable and familiar, even if that means not fighting for every second of life with medical interventions.

“Every time I ask, ‘Where do you want to be when you take your last breath? Or when your heart beats its last?’ nobody ever says, ‘Oh, I want to be in intensive care’ or ‘Oh, I want to be in the hospital’ or ‘I want to be in a skilled nursing facility.’ They all say, ‘I want to be in the house'”, said john tastadAdvance Care Planning Program Coordinator at Sharp HealthCare in San Diego.

Meanwhile, doctors who specialize in diseases that tend to kill Americans, like cancer and heart disease, are increasingly willing to discuss hospice at home as an option if treatment alternatives mean probably painful sacrifices in terms of quality of life.

“There’s been a little culture shift where maybe oncologists, pulmonologists, congestive heart failure doctors are referring patients to palliative care earlier to help with symptom management, planning advanced care,” said Dr. Pouria Kashkouliassociate medical director of palliative care at UC Davis Health.

Trends have created a booming industry. In 2021, the California Department of Health Care Access and Information listed 1,692 licensed palliative care agencies in its tracking databasea leap from the 175 agencies listed in 2002.

Such growth – and the money behind it – has sometimes led to problems. A survey 2020 by the Los Angeles Times found that fraud and quality-of-care issues were common in California’s hospice care industry, a finding supported by a subsequent status audit. Governor Gavin Newsom signed a bill in 2021 which imposed a temporary moratorium on most new palliative care licenses and sought to limit questionable kickbacks to doctors and agencies.

When done correctly, however, home hospice can be a comfort to families and patients. Hospice usually lasts from a few days to a few months, and although services vary, many agencies offer regular visits from nurses, orderlies, social workers and spiritual advisors.

Most people using hospice care are insured under the federal Medicare program. The amount Medicare pays varies by region, but is generally between $200 and $300 a day, said Dr. Kai Romerochief medical officer of the association Hospice of the Bay.

To find quality end-of-life care, 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? crisis in the middle of the night?

Although palliative care providers offer crucial counseling and support, families must be prepared to assume the bulk of the care. “It really takes a pretty mature family system to be able to come together to meet all the needs,” said Tastad of Sharp HealthCare.

Several end-of-life experts have said they expect the proportion of Californians choosing to die at home to continue to rise, citing a variety of factors: Medical advances will make it easier for patients to receive life management care pain and other palliative home care; telemedecine make it easier for patients to consult doctors at 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 communications specialist and assistant professor of journalism at California State University-Sacramento.

This story was produced by KHNwho publishes California Healthlinean editorially independent service California Health Care Foundation.