The COVID-19 pandemic has caused a spike in the share of Californians who die at home rather than in a hospital or nursing home, accelerating a slow but steady increase that stretches back at least two decades.
A recent surge in deaths at home began in 2020, the first year of the pandemic, and the rate has continued to rise, surviving strict lockdowns in hospitals and nursing homes that could explain the initial shift.
Nearly 40% of California deaths in the first 10 months of 2022 occurred at home, compared with about 36% for all of 2019, according to death certificate data from the California Department of 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 deaths at home was available in the agency’s public database.
The trend is increasing among Californians with serious chronic conditions. About 55% of Californians who died of cancer did so at home in 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 proportion of deaths that occurred at home also jumped to 33% in 2020, and then rose to nearly 34% in 2021. Nationwide data for 2022 is not yet available.
The early deadly sweep of COVID in California alone does not explain the increase in the death rate at home; the vast majority of people who died from https://www.sacbee.com/news/local/health-and-medicine/article271574537.html-19 died in a hospital or nursing home. Instead, medical experts said, the surge — at least initially — appears to coincide with broad policy changes at hospitals and nursing homes as caregivers struggle to contain a virus that is virulent and poorly understood.
Universal bans on personal visits in hospitals and nursing homes, even to the bedsides of dying patients, have created a harrowing situation for families. Many decided to take their loved one home. “It was horrible when mom was dying in the nursing home and the only way to see mom was through the window,” he said. Barbara Karnesa 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 treatment for other serious illnesses. It is also believed to have contributed to the rise in deaths at the home.
Those who specialize in bereavement care say it’s no surprise the trend has continued even as visitation policies have eased. More people simply want to die in a comfortable, familiar place, they said, even if it 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 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 skilled nursing facility.” They all say: “I want to be at home,” he said John Tostadadvance care planning program coordinator 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 home hospice as an option when alternative treatments are likely to mean painful sacrifices in quality of life.
“There’s been a bit of a culture change where maybe oncologists, pulmonologists, congestive heart failure doctors are referring patients earlier to palliative care to help with symptom management, improved care planning,” he said. Dr. Puriya Kashkuliassociate medical director of UC Davis Hospice.
The trends have created a booming industry. In 2021, the California Department of Health Access and Information listed 1,692 licensed hospice agencies in its tracking databasea jump from the 175 agencies listed in 2002.
That much growth — and the money behind it — sometimes leads to problems. A 2020 investigation The Los Angeles Times found that fraud and quality-of-care problems were common in California’s hospice industry, a finding bolstered by next state audit. Governor Gavin Newsom signed the bill in 2021 which placed a temporary moratorium on most new hospice licenses and sought to curb questionable kickbacks to doctors and agencies.
When done right, 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 facilities provide regular visits by nurses, medical professionals, social workers, and spiritual advisors.
Most people who use hospice are insured through the federal Medicare program. The amount Medicare pays varies by region, but is usually between $200 and $300 per day. Dr. Kai Romerochief medical officer of a non-profit organization Hospice by 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 looking for nonprofit providers and preparing a list of questions: How often will nurses make in-person visits? Under what circumstances do patients have access to a doctor? What help will be available in case of a crisis in the middle of the night?
While hospice providers offer important guidance and support, families must be prepared to take on the bulk of caregiving. “It really takes a pretty advanced family system to be able to come together to meet all the needs,” Sharp HealthCare’s Tostad said.
Several end-of-life experts said they expect the proportion of Californians who choose to die at home will continue to climb, citing a variety of factors: advances in medicine will make it easier for patients to receive pain management and other palliative care at home; telemedicine will make it easier for patients to see doctors from home; and two powerful forces in American health care—insurance companies and the federal government—increasingly view dying at home as an affordable alternative to a long hospital stay.