More Californians are dying at home. Is this another Covid ‘new normal’? – Orange County Registry

By Philip Reese | Kaiser Health News

The Covid-19 pandemic has prompted a rise in the proportion of Californians dying at home rather than in a hospital or nursing home, accelerating a slow but steady increase dating back at least two decades.

The most recent spike in home deaths began in 2020, the first year of the pandemic, and the rate has continued to rise, surviving rigid lockdowns in hospitals and care homes, which may help explain the initial delay.

Nearly 40% of California deaths in the first 10 months of 2022 occurred at home, up from about 36% for all of 2019, according to California Department of Health and Human Services death certificate data. In comparison, data from the US Centers for Disease Control and Prevention shows that about 26% of Californians died at home in 1999, the earliest year for which data on deaths at home is available in the agency’s public database.

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

Nationally, the proportion of home deaths also jumped to 33% in 2020, and then jumped to almost 34% in 2021. Federal data for 2022 is not yet available.

Covid’s early, deadly breakthrough in California does not in itself explain the rise in death rates at home; The vast majority of people who have died from Covid died in a hospital or nursing home. Instead, medical experts said, the spike appears to have coincided — at least initially — with sweeping policy changes in hospitals and nursing homes as caregivers struggled to contain a virus that’s both virulent and poorly understood.

The sweeping bans on personal visits to hospitals and nursing homes, even at the bedside of dying patients, created an agonizing situation for families. Many chose to bring a loved one home. “It was devastating to have Mom dying in a nursing home and you can only see Mom through the window,” said Barbara Karnes, a registered nurse who has written extensively on end-of-life care.

At the same time, fears of Covid exposure caused many people to avoid hospitals during the early years of the pandemic and, in some cases, neglect to treat other serious conditions. That, too, is said to have contributed to the rise in deaths at home.

Those specializing in end-of-life care say it’s no surprise that the trend has continued despite the relaxation of visiting regulations. They said more people just want to die in a comfortable, familiar place, even if that means not fighting for every second of their lives with medical procedures.

“Every time I ask, ‘Where do you want to be when you breathe your last? Or when your heart beats its last beat?’ No one ever says, “Oh, I want to go to the ICU,” or “Oh, I want to go to the hospital,” or “I want to go to a qualified nursing facility.” They’re all saying, ‘I want to be home,'” said John Tastad, care advance planning program coordinator at Sharp HealthCare in San Diego.

Meanwhile, doctors who specialize in the diseases that are killing Americans, like cancer and heart disease, are increasingly willing to talk about home hospice as an option when the treatment alternatives are likely to mean painful quality of life compromises.

“There has been a small cultural shift where perhaps oncologists, pulmonologists and heart failure doctors are referring patients earlier to palliative care to help with symptom management and advanced treatment planning,” said Dr. Pouria Kashkouli, associate medical director for hospices 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 database, a jump from the 175 agencies it listed in 2002.

So much growth — and the money behind it — has sometimes led to problems. A 2020 Los Angeles Times investigation found that fraud and issues with the quality of care were rampant in California’s hospice industry, a conclusion supported by a subsequent state audit. Gov. Gavin Newsom signed a bill into law in 2021 that put a temporary moratorium on most new hospice licenses and sought to curb questionable kickbacks to doctors and authorities.

When done right, however, home hospice can bring comfort to families and patients. Hospice typically lasts from a few days to a few months, and while services vary, many agencies offer regular visits from nurses, health workers, social workers, and spiritual advisors.

Most people who use hospice are covered through the state Medicare program. The amount Medicare pays varies by region, but is typically between $200 and $300 per day, said Dr. Kai Romero, chief medical officer of the nonprofit Hospice by the Bay.

To find quality end-of-life care, Andrea Sankar, a Wayne State University professor and author of Dying at Home: A Family Guide for Caregiving, recommends looking for nonprofit providers and preparing a list of questions: How often? Visit nurses in person? Under what circumstances do patients have access to a doctor? What help is there for a crisis in the middle of the night?

While hospice providers provide critical guidance and support, families must be willing to provide the bulk of the care. “It really takes a fairly developed family system to meet everyone’s needs,” said Sharp HealthCare’s Tastad.

Several end-of-life experts said they expect the proportion of Californians choosing to die at home will continue to rise, citing a variety of factors: Medical advances will make it easier for patients receive pain management and other palliative care at home; Telemedicine will make it easier for patients to consult doctors from their homes; and two powerful forces in American healthcare — 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 assistant professor of journalism at California State University-Sacramento.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with Policy Analysis and Polling, KHN is one of the three major operational programs of the KFF (Kaiser Family Foundation). KFF is a donated non-profit organization that provides information on health issues to the nation. More Californians are dying at home. Is this another Covid ‘new normal’? – Orange County Registry

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