The COVID-19 pandemic has fueled 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 dates back at least two decades.
The recent surge in at-home deaths began in 2020, the first year of the pandemic, and the rate continued to climb as hospitals and nursing homes endured harsher lockdowns, which may help explain the initial shift. About 40% of deaths in California occurred at home during the first 10 months of 2022, up from about 36% for all of 2019, according to death certificate data from the California Department of Public Health. By comparison, US Centers for Disease Control and Prevention data show that about 26% of California deaths occurred at home in 1999, the earliest year for which data on home deaths is available in the agency’s public database .
The trend has increased among California residents with serious chronic conditions. About 55% of Californians who died of cancer during the first 10 months of 2022 did so at home, compared to 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 about 16% in 1999.
Nationwide, the share of deaths that occurred at home also jumped to 33% in 2020, then increased to nearly 34% in 2021. Nationwide data for 2022 is not yet available.
The early, fatal wipeout of Covid across California does not in itself explain the increase in at-home mortality; Most people who have died of Covid have died in a hospital or nursing home. Instead, medical experts said, the surge — at least initially — appears to coincide with broader policy changes at hospitals and nursing homes as caregivers struggle to contain the virulent and poorly understood virus.
The widespread ban on in-person visits in hospitals and nursing homes, even near the bedsides of dying patients, has created a sore spot for families. Many chose to take their loved ones back home. “Having a mother in a nursing home and dying was devastating, and the only way you can see the mother is through the window,” said Barbara Carnes, a registered nurse who detailed her experience of end-of-life care. written.
At the same time, fear of exposure to COVID prompted many people to avoid hospitals in the first years of the pandemic, in some cases neglecting treatment for other serious conditions. It is also believed to have contributed to the increase in homicides.
Those who specialize in end-of-life care say it is no surprise that this trend continues despite the easing of visitation policies. He said more people just want to die in a comfortable, familiar place, even if it means fighting for every second of life with no medical interventions.
“Whenever 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 stay home,” said John Tastad, coordinator of the advance care planning program at Sharp Healthcare in San Diego.
Meanwhile, physicians who specialize in the diseases that kill most Americans, such as cancer and heart disease, are becoming more accepting of discussing home hospice as an option if the treatment option means painful sacrifices in quality of life. .
“There has been a bit of a shift in culture, where oncologists, pulmonologists, congestive heart failure physicians may be the first to provide palliative care to help patients with symptom management, advanced care planning,” said Dr. Pauria Kashkouli, associate medical director at Dharamsala. Sending for.” 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 listed in 2002.
So much growth – and the money behind it – sometimes creates problems. A 2020 investigation by the Los Angeles Times found that fraud and quality of care issues were common in California’s hospice industry, a conclusion supported by subsequent state audits. Gov. Gavin Newsom signed a bill in 2021 that temporarily freezes most new hospice licenses and seeks to rein in suspected kickbacks to doctors and agencies.
When done properly, however, home hospice can be a comfort to families and patients. Hospice typically lasts anywhere from a few days to a few months, and while services vary, many agencies provide regular visits from nurses, health aides, social workers, and spiritual counselors.
Most people who use hospice are insured through the federal Medicare program. Dr. Kai Romero, chief medical officer at the nonprofit Hospice by the Bay, said the amount Medicare pays varies by region, but is typically around $200 to $300 a day.
Andrea Shankar, a professor at Wayne State University and author of “Dying at Home: A Family Guide for Caregiving,” suggests finding quality end-of-life care, finding nonprofit providers, and preparing a list of questions. Recommend: How often will nurses visit in person? Under what circumstances do patients have access to a doctor? What help would be available for a crisis in the middle of the night?
While hospice providers provide important guidance and support, families need to be prepared to handle the bulk of care. “It’s really been a pretty evolved family system to be able to rally to meet all the needs,” said Tastad at Sharp Healthcare.
Many end-of-life experts said they expect the proportion of Californians dying at home to continue to climb, citing a variety of factors: Medical advances are making it easier for patients to receive pain management and other palliative care at home will go; Telemedicine will make it easier for patients to consult doctors from the comfort of their homes; And two powerful forces in American health care — insurance companies and the federal government — increasingly view dying at home as an affordable alternative to long hospital stays.
Philip Reese is a data reporting specialist and assistant professor of journalism at California State University-Sacramento.
This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
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