For most of the almost four months she stayed at a Springfield nursing home, Susan West says she was so fearful of retaliation from the staff that she communicated with friends and family only by text message.
“I avoided phone calls as much as I could,” said West, 56, a former resident of Lewis Memorial Christian Village, 3400 W. Washington St. “I didn’t want anyone to get any more information than they already had.”
West and local advocates for residents of long-term care facilities who looked into and validated her concerns said she suffered and complained for months about not getting proper care at the 171-bed, not-for-profit Lewis Memorial before she was immediately discharged against her will in early January.
Officials from Lewis Memorial and its parent organization, Lincoln-based Christian Horizons, didn’t return phone calls seeking comment last week on West’s case.
“We believe she was retaliated against,” said Megan Jizmagian, the Springfield area’s regional long-term care ombudsman. “There was a lot of care neglect and retaliation by staff for making complaints.”
Statewide patient advocates say improper involuntary discharges are the top complaint filed against nursing homes.
The advocates will push again this year to enact stricter legislation that guards against improper discharges affecting patients such as West, according to Jamie Freschi, Illinois’ long-term care ombudsman.
The legislation, introduced in the General Assembly last year, didn’t receive a vote of the full House or Senate.
Nursing homes and assisted-living centers in Illinois are allowed to discharge people against their will for reasons that include mental and physical health, behavior and lack of payment.
Long-term care facilities are required by federal law to give 30 days’ notice before evicting someone. That time period allows residents, their families and advocates such as ombudsmen the opportunity to trigger appeals that can lead to hearings decided by a third party, Freschi said.
But notice often isn’t given, leaving nursing home residents stranded in hospitals while nursing homes immediately evict them or give no reason or inadequate reasons for not taking them back, she said.
Long-term care facilities also sometimes pressure residents and their families to leave by making vague statements that a facility isn’t equipped to care for a resident any longer, she said. In those cases, ombudsmen aren’t notified so there’s no chance to educate residents and their relatives about their rights, she said.
A bill expected to be introduced in the next few weeks will again include language to “give voice to our most vulnerable population” when nursing homes and assisted-living centers want to evict people they view as bothersome or difficult to care for, Freschi said.
“The legislation updates the Illinois Nursing Home Act to reflect the newly revised federal nursing home regulations in relationship with involuntary transfers and discharges,” she said. “The legislation also closes loopholes that currently allow facilities to circumvent regulations making it far too easy to be non-compliant.”
Last year, officials from the nursing home industry opposed the legislation, which would have put into place new monetary penalties when nursing homes fail to give the required 30-day notice for an involuntary discharge.
The proposal could have resulted in $370 million in additional annual fines against nursing homes for a problem that exists, but is being overblown by advocates of the legislation, according to Matt Hartman, vice president of public policy for the nursing home industry’s Illinois Health Care Association.
Freschi said she doesn’t know whether the association’s estimate of additional fines is accurate, but the fines always could be avoided.
“My simple answer is, ‘Be compliant,’” she said.
No. 1 complaint
There were 911 such complaints received by ombudsmen in the fiscal year ending June 30, Freschi said.
Many cases go unreported, said Freschi, who is based in Springfield and previously was the Springfield area’s regional ombudsman.
“Residents and family members are scared, confused and frankly baffled by the current system that clearly provides an advantage to facilities,” she said.
The legislation would have set up a mechanism for more-rigorously enforcing new staffing rules that were phased in between 2010 and 2014 “to assure basic needs are met and proper care is delivered,” Freschi said.
“Quite possibly, if basic needs are met, many of the problems with improper discharges would be resolved,” she said.
Hartman said the Illinois Health Care Association likely will oppose the legislation again.
Involuntary discharges represent less than 1 percent of all discharges, Hartman said.
The bill to be filed will make it clear that the Illinois Department of Public Health has authority from the federal government to require that nursing homes readmit patients if a discharge is deemed unjustified after a hearing, Freschi said.
Like House Bill 3392 and Senate Bill 1624, which failed to progress in the General Assembly, the expected legislation also will give long-term care ombudsmen more authority to advocate on behalf of individuals, Freschi said.
Public Health took a neutral stance on the bills last year, agency spokeswoman Melaney Arnold said.
Susan West’s case is a prime example of improper discharge, Freschi said.
Jizmagian added that her office has noticed a “drastic increase” in complaints about the care of residents at Lewis Memorial, which has a one-star overall rating out of five stars on Medicare.gov’s Nursing Home Compare website.
West, a widowed mother of two grown children and three grandchildren — all of whom are in Texas — said she grew up in Danville and worked as a hospital clerical worker in Texas before returning to Illinois in search of better health care in 2017.
Among a range of health problems, West has a swelling condition called lymphedema and a non-healing wound on her left foot.
After stays at an Urbana hospital, a Mattoon nursing home and a short time at home — she has an apartment in Springfield — West became an inpatient for several weeks at Memorial Medical Center, where she received care for a skin infection known as cellulitis.
She was discharged in mid-September from Memorial to Lewis Memorial, a facility she wasn’t able to visit but was willing to accept her.
West began receiving rehabilitation services and said she initially had no problems with the care at Lewis.
“The first time you complain about something, that’s it,” she said. “It got so retaliatory.”
The state public health department found that a nursing assistant was wrong to throw out a mini-refrigerator full of home-cooked, nutritious food provided by a friend in November, according to an IDPH inspection report.
The nursing assistant contended the food was attracting roaches, the report said.
State officials also said Lewis’ staff failed to provide pressure-relieving boots on West’s feet to prevent ulcers and put her at risk of a urinary-tract infection by the way they handled a urinary catheter and collection bag.
None of the findings was severe enough to prompt a fine, according to the state.
Jizmagian said state regulators haven’t yet ruled on additional complaints from her office and West related to the involuntary discharge and a Dec. 12 incident in which West was injured.
West said she was brought to the hospital at her request and later released but still has headaches and soreness in her left arm, all related to the fall.
West said she missed several appointments with her wound-care doctor because Lewis’ staff failed to get her ready in time to leave and make it to the doctor’s office.
When she complained about the situation, she said the staff several times got her out of her bed and let her sit in her wheelchair for hours — which was unnecessary and contrary to doctors’ orders that her legs be elevated — all to ensure she wouldn’t miss doctor’s appointments.
She said she was discharged in early January in a phone call she received while at Memorial — where she again was treated for cellulitis.
According to West, Lewis Memorial’s business manager told her that she was “not welcome back” because of a $27,000 bill for part of her stay at Lewis that hadn’t been paid.
West said the outstanding bill was part of a dispute between the nursing home and her insurance provider, the Veterans Health Administration’s Civilian Health and Medical Program. She receives the coverage as the surviving spouse of a disabled former Marine and Vietnam veteran.
“I didn’t feel safe there,” she said.
But she said Lewis and other facilities should be punished for treating residents unfairly.
The resulting confusion associated with the immediate eviction led to her being brought to a nursing home that is about an hour’s drive from Springfield, she said.
The distance makes it harder for her to receive regular wound-care visits from her Springfield doctor and face-to-face meetings with the friend who has power of attorney over her health care, she said.
“This has moved me away from everyone I know and my support system,” West said. “It makes it really hard.”
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Long-term care watchdogs to push for restrictions on patient ‘dumping’