More Californians are dying at home than in hospitals

The proportion of Californians dying at home rather than in a hospital or nursing home has accelerated during the COVID-19 pandemic.

The proportion of Californians dying at home rather than in a hospital or nursing home has accelerated during the COVID-19 pandemic.

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

The recent rise in deaths at home started in 2020, the first year of the pandemic, and the rate has continued to rise, overcoming the strict lockdowns 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 first year that data on deaths at home is accessible in the agency’s public database.

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

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

The initial and deadly sweep of COVID in California does not by itself explain the increase in death rates at home; the vast majority of people who died from 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 virulent and poorly understood virus.

Widespread bans on personal visits in hospitals and nursing homes, even at the bedsides of dying patients, created a distressing situation for families. Many chose to take a loved one back home. “It was devastating to have Mom in a nursing home and dying, and the only way to see Mom is through the window,” said Barbara Karnes, a registered nurse who has written extensively on end-of-life care.

At the same time, fear of exposure to COVID-19 led many people to avoid hospitals in the early years of the pandemic, in some cases neglecting to treat other serious illnesses. This is also believed to have contributed to the rise in deaths at home.

Those who specialize in end-of-life care say it’s no surprise that the trend has continued, even as visitation policies have been relaxed. They said more people simply want to die in a comfortable, familiar place, even if it means not fighting every second of their lives with medical interventions.

“Whenever I ask, ‘Where do you want to be when you take your last breath? Or when your heart beats the last beat?’ 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 specialist clinic’. Everyone says, ‘I want to stay home,’” said John Tastad, advanced care planning program coordinator at Sharp HealthCare in San Diego.

Meanwhile, physicians who specialize in the diseases that tend to kill Americans, such as cancer and heart disease, have become more accepting of the discussion of home asylum as an option if treatment alternatives are likely to mean painful sacrifices in 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, advanced care planning,” said Dr. Pouria Kashkouli, associate medical director for 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 database, a jump from the 175 agencies listed in 2002.

So much growth – and the money behind it – sometimes leads to problems. A 2020 investigation by the Los Angeles Times found that fraud and quality of care issues were common in California’s palliative care industry, a conclusion reinforced by a subsequent statewide audit. Governor Gavin Newsom signed a bill in 2021 that placed a temporary moratorium on most new hospices licenses and sought to rein in questionable kickbacks to doctors and agencies.

When done correctly, however, hospice at home can be a comfort to families and patients alike. Palliative care usually lasts from a few days to a few months, and although services vary, many agencies provide regular visits from nurses, health aides, social workers, and spiritual counselors.

Most people who use palliative care are insured under the federal Medicare program. The amount you pay for Medicare varies by region, but is typically around $200 to $300 a day, said Dr. Kai Romero, medical director of the nonprofit organization Hospice by the Bay.

To find quality end-of-life care, Andrea Sankar, a professor at Wayne State University and author of “Dying at Home: A Family Guide for Caregiving,” recommends looking for nonprofit providers and preparing a list of questions: How often do 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 palliative care providers provide crucial guidance and support, families need to be prepared to shoulder most of the care. “It really takes a very evolved family system to be able to meet all the needs,” said Tastad of Sharp HealthCare.

Several end-of-life experts said they expect the proportion of Californians who choose to die at home to continue to rise, citing a variety of factors: medical advances will make it easier to manage pain and other palliative care at home; telemedicine will make it easier for patients to see doctors from home; and two powerful forces in the American health care system – insurance companies and the federal government – ​​increasingly see dying at home as an affordable alternative to long hospital stays.

More Californians are dying at home than in hospitals

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