David Alter in front of his home in Berkeley on March 18, 2024. (Martin do Nascimento/KQED)
This story was originally published on March 20, 2024.
On a warm September morning in 2020, David Alter was cleaning up his kitchen in Berkeley. He saw his wife, Lisa, move towards him out of the corner of his eye. He turned to dry his hands on a towel, and then he heard a loud noise.
“I’ll never forget that sound,” he said. “It was like the sound of a baseball getting hit. She did nothing to brace her fall. Her head smacked directly on the linoleum floor.”
His wife lay still as blood pooled around her body, and Alter sprinted to the bathroom to scavenge for bandages. He wrapped Lisa’s head in gauze and then carried her to the car before speeding to the emergency department at Kaiser Permanente’s Richmond Medical Center, where he said a doctor diagnosed Lisa with a brain bleed.
Lisa has Huntington’s disease, a genetic disorder that causes nerve cells to break down over time, ravaging the brain and body. The condition is marked by involuntary jerking and writhing movements. It impairs one’s gait, posture and balance. Eventually, Lisa could not walk, talk or think.
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Alter had failed for an entire year to find a nursing home for his wife, as she was no longer safe at home.
“It got to the point that we were going to the ER weekly,” Alter said. “If the fall was late at night, we wouldn’t go right away because we were too exhausted. I would patch her up. I would use suture strips or even sometimes Krazy Glue to close cuts.”
He had called hundreds of skilled nursing facilities across California. He penned personal letters to facility directors illustrated with color photos of their family, describing his wife as “a vibrant woman, wife, elementary school teacher and mother.”
He received denial after denial. There was not a single facility that would accept a complex patient who would likely need many years of specialized, very expensive care. Lisa received her Huntington’s disease diagnosis when she was 45 years old. From the onset of symptoms, people with the condition have a life expectancy of 10 to 25 years. Lisa’s needs will likely increase over time.
Alter turned to social workers with the Huntington’s Disease Society for help. They advised him to leave his wife in the hospital the next time she landed in the emergency department. “That’s the last resort if the caregiver isn’t safe to take their loved one home,” said Jessica Marsolek, the society’s associate director of community services.
Hospitals are much more equipped to connect and successfully transfer patients to nursing homes. “I don’t know anybody that’s gotten into a nursing home any other way,” said Maura Gibney, executive director for California Advocates for Nursing Home Reform. She regularly advises families to leave their loved ones in the hospital. “That’s the only way.”
Four days after Lisa’s fall, she was ready for discharge from Kaiser’s emergency department in Richmond, but Alter made the decision not to pick her up. She wouldn’t leave the hospital for several months.
Part of a growing trend
Patients spend more and more time in the hospital, even people who — like Lisa Alter — are medically stable and ready for a lower level of care at a facility like a nursing home or a psychiatric treatment center. Increasingly, they languish for weeks, months and even years, which delays their recovery, and that, in turn, delays care for patients who need urgent care.
“We can’t accept some patients trying to transfer in from smaller hospitals,” said Dr. Valerie Norton, emergency medicine physician at Scripps Mercy Hospital in San Diego. “Because we don’t have room for them. Or there might be somebody down in the emergency department that’s waiting to be admitted into the hospital. And we have to wait until somebody else gets discharged before we can move them upstairs. If you’re lying in a bed in the emergency department, that’s just a hard gurney with a broken hip, and you’re waiting 16 hours for a bed to open up somewhere, that’s pretty tough.”
In 2022, the average length of stay inside hospitals across the country increased by 19.2% compared to the year before, according to an issue brief prepared by the American Hospital Association. In California, 4,500 patients are stranded inside hospitals every day, according to a report from the California Hospital Association, which attributes the problem of discharge delays to insurance companies openly disregarding “the clinical guidance of doctors and nurses” and “delaying or denying the care” that patients need.
“We definitely know that across California, more patients are spending longer times in the hospital,” said Kristof Stremikis, who directs the California Health Care Foundation’s market analysis and insight team.
“It’s both very complicated and incredibly simple,” Stremikis said. “It’s rising demand with problems in the supply. There’s more patients that need to be discharged. They tend to be sicker. They tend to have more complex conditions. And then on the supply side, there’s just fewer and fewer places to send them.”
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As the country’s demographics trend older, more and more patients require care at nursing homes, but those facilities are plagued by dire staffing shortages, according to the American Health Care Association. A lack of workers downstream means patients like Lisa Alter get stuck upstream inside the hospital’s emergency department.
“We don’t have anywhere safe to send them,” Norton said. “They would qualify to be at a lower level of care like a skilled nursing facility or an assisted living facility. But because of their multiple medical problems or their psychiatric condition, there’s not a place that’s willing to take them.”
The number of days patients are stuck at Scripps has tripled in recent years, she said, and costs the health care system $56 million a year.
“It’s just insane how long these patients stay in the hospital,” Norton said. “And we’re not getting paid for that. We’re just eating that cost. And they should be in a nursing home somewhere.”
The problem was exacerbated by the pandemic, which accelerated feelings of anguish and other persistent mental health issues in health care workers.
Nearly half of health care workers across the U.S. reported often feeling burned out in 2022, according to a federal survey from the Centers for Disease Control. About the same amount said they intended to look for a new job.
“We’ve had a long, long, long-term problem,” said Craig Cornett, CEO of the California Association of Health Facilities. “Every other part of the health care sector has recovered its staff to its pre-COVID days. We are the only part of the health care continuum that is still below where we were before COVID.”
California is spending $26 million to recruit more health care workers to help fill this gap, with the hope of attracting 5,500 certified nursing assistants by 2027. State lawmakers are considering SB 895, a new bill that would allow select community college districts to offer nursing degrees, lowering the bar for entry and making it easier for workers to enter the health care industry.
But, Cornett said, the workforce challenge is huge, and it is not going away.
The breaking point
Alter always thought he’d grow old alongside his wife. But he could no longer parent his two children, hold a full-time job as a software engineer, and care for Lisa around the clock.
When he learned that his wife was ready to be discharged from the emergency department at Kaiser Richmond, he steadied himself.
“I remember talking to them, and I said: ‘I’m not gonna pick her up. I’m not going to take her home.’”
Alter said the hospital’s discharge team struggled to find a nursing home for Lisa, too. His wife Lisa would spend over four months at Kaiser, a time period that Alter described as “excruciating” for him. He was so worried that the hospital would force him to take his wife home that he held off from visiting her in the hospital initially.
“It’s incredibly emotional to walk away,” Alter said. “And Kaiser’s calling you. And they’re like, ‘Why aren’t you picking her up?’ It’s really, really stressful. And it gets worse every day she’s there.”
Kaiser Permanente declined an interview for this story. In an emailed statement, the organization said it strives to find the right care for patients as quickly as possible. “While the vast majority of placements occur in a timely fashion, there are some circumstances, including the need for highly specialized care and patient or family preferences, that can present challenges,” the statement said.
Patient discrimination
On top of staffing issues, facilities have a financial incentive to choose patients who can pay the highest price. “It’s unfortunate, but it is true,” Stremikis said. “Medi-Cal rates are way lower than private payers. It’s just another example of the inequalities within our system.”
Medi-Cal is the state’s insurance program, which covers Alter’s wife. It’s supposed to pay for her to receive specialized care at a round-the-clock facility, but that has not been his experience. “There’s nowhere I can place her,” Alter said.
Eventually, after more than four months, Kaiser Permanente did find housing for Lisa in Walnut Creek. The home provides food and supervision but not specialized nurses or regular doctor visits. Alter said she’s not at the right facility, but he doesn’t know what to do. He hired consultants and lawyers and wrote his legislators, all to no avail.
Three years after Alter left his wife in the hospital as a hail mary play to get her the care she needs, that’s still not happening. “You’re just defeated,” he said.
Meanwhile, his wife declines. “She’s 70 or 80 pounds,” Alter said. “She’s so tiny. She’s skin and bones.”
He also worries she could injure herself again, land back in the hospital, and then get stuck in the cycle all over again.
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“You shouldn’t have to leave someone in the hospital and force them to take care of it,” Alter said. “That’s not the right solution. As a society, we’re not set up in a way to care for people properly.”
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