Katie Craven started dreaming of taking her infant son, Jamie, home from the hospital after his birth — 357 days ago.
Ron Wenaas was hoping his 73-year-old wife, Suzanne, would be discharged from her hospital on Jan. 31, but she remained there two weeks later.
"I thought she would be home in a couple days," he said.
Two delayed discharges, happening at the same time last week, reflected a growing problem that is stagnating hospital care in Minnesota. The declining number of nursing homes and at-home care providers has left hospitals with no place to transfer people who no longer need acute care but still need some help.
A survey of 95 hospitals showed patients received 14,622 more days of care than necessary — in just one week in mid-December.
"Almost 2,000 patients were stuck," said Dr. Rahul Koranne, CEO of the Minnesota Hospital Association.
Craven gave birth eight weeks prematurely to twin boys, one of whom died. Surgeries and placement on a ventilator bought Jamie time for his lungs to strengthen, and he eventually switched to a tracheostomy tube in his throat to help him breathe.
The boy was stable enough to go home in September if he had round-the-clock support to respond if his tube plugged or got pulled out. That level of care generally requires a registered nurse, but none were available over the past six months.
Instead, Craven has finished her job as a school teacher each day and then — after feeding the family dog — headed over to M Health Fairview's Masonic Children's Hospital to be with her son for the night in the neonatal intensive care unit (NICU).
"We didn't get Halloween [at home], we didn't get Thanksgiving, we didn't get Christmas," Craven said. "It looks like we won't quite get his 1st birthday, but it's going to be close."
One problem leads to another
Delays cause a cascade of problems. Patients awaiting transfers take up beds that otherwise could go to people waiting in emergency rooms, who take up ER bays that otherwise could go to patients in waiting areas.
Waiting patients also increase caseloads for nurses, which increases their stress and reduces the time they can spend with others. Patients and family members grow anxious as they wait for days or weeks, which can spark verbal or even physical altercations.
Minnesota lawmakers and nurse union leaders unveiled legislation Monday to confront some of those effects. State Sen. Erin Murphy, DFL-St. Paul, is lead author of a bill that would require hospitals to set up staffing committees to create sufficient nurse-patient staffing levels, eliminate the boarding of patients in ERs, and publicly report their performance against staffing benchmarks.
Overworked nurses are leaving hospital care, which exacerbates hospital shortages, she said: "Nurses are raising their hands saying they can't do it this way."
State Sen. Jim Abeler, R-Anoka, a co-author, said lawmakers also must find ways to address the problem of insufficient transitional care — or patients will continue to clog up hospitals.
"We're trying to find different ways to decompress the hospitals," he said. "Hennepin County [Medical Center] has over 50 people sitting there. We need to find a way to move them out."
Nursing homes sometimes conserve beds for patients with less complex needs. Abeler proposed using some of Minnesota's budget surplus on incentive payments so nursing homes mix in more complex cases.
Hospitals also want some of the surplus to cover the cost of boarding patients until they are discharged, because health insurance coverage often ends when they no longer need acute care. Koranne said hospitals absorbed $37 million in uncompensated costs just for the one week of patients who couldn't be discharged on time in mid-December.
Hoping for home
Craven's son was one of five infants waiting in the Masonic Children's NICU last week for home care services so they could be discharged. Fewer nurses are providing home care, because the reimbursement rates are lower in Minnesota than in other states and are well below hospital wages, said Deb Lunak, a care coordinator for the NICU.
The fast-growing Jamie received stroller rides up and down the hallway — an adorable anomaly in a NICU full of tiny neonates clinging to life. At-home care may never come, so doctors are working on strengthening his breathing and training his mother so they can go home with less support. A valve covers his breathing tube for much of the day right now so he can practice breathing normally and making sounds.
Craven said she is excited but nervous to finally bond with her son at home and be a mother outside of the busy NICU. Visitor restrictions have meant many relatives haven't met Jamie yet.
"I'm hoping, buddy, that we have a smooth transition," she said as she held Jamie in her arms.
Wenaas' wife was admitted to M Health Fairview's Southdale Hospital in Edina on Jan. 18 for a staph infection causing disabling back pains. She struggled with delusions from the pain medications and the prolonged stay — on top of her multiple sclerosis.
Hospital coordinators found an open nursing home bed in St. Paul, but the husband refused it because the facility had terrible care ratings.
"Pain medication sends her into outer space," he said. "That makes her very difficult to treat because she fights everything. She needs very skilled care."
In the end, the Wenaases skipped the nursing home step; he received discharge instructions and brought his wife home Saturday. Mostly he needed to learn how to inject antibiotics into her central catheter.
A nurse and a physical therapist will provide some home care, and neighbors have rallied to the cause, bringing meals and support. Wenaas received a lift to help his wife get up, but she's mostly bedbound and he can't operate the device without causing her pain. So it sits in the garage.
More challenges are ahead, but at least the hospital grind is over, he said: "I'd get home and I'd go to sleep. I'd wake up and I'd go to the hospital."