Nursing-Home Families Want Answers as COVID Comes Back
Still seeking safety as the data remains unclear
It's been two months since Austin City Council passed a resolution meant to fortify nursing homes and protect their residents from the ravages of COVID-19, and almost as long since the federal government began requiring these facilities to report their COVID-19 cases and deaths. Yet clear data about how well specific nursing facilities have responded to COVID-19, or how many of their highly vulnerable residents have been affected, is still lacking.
In a bit of good news, local officials announced via press release June 25 that comprehensive testing had uncovered few new cases of the virus among residents and staff within local nursing homes. Just three residents and nine staff tested positive across 27 facilities where transmission was not previously identified, the statement said. Seventeen facilities had no cases, although 180 test results are still pending.
That relief may be short-lived. Testing is a snapshot of conditions at a moment in time; the results could already be obsolete. Protecting nursing home residents will continue to be hugely challenging as transmission of the virus continues rising rapidly across the region. Travis County entered Stage 4 of its COVID-19 risk-based guidelines on June 14, a benchmark measured by the 7-day rolling average of new hospital admissions due to COVID-19 in the five-county Austin MSA.
On June 24, Austin Interim Health Authority Dr. Mark Escott shared with media the bad news that, according to the modeling conducted by Dr. Lauren Ancel Meyers' team at UT-Austin, "if things don't change, if people don't take more protective behaviors ... by mid-July, we're going to exceed hospital capacity." On Monday, July 29, Escott and Meyers addressed a special City Council meeting with similar urgency (see "All Of A Sudden, Is It Too Late?").
The expected surge is especially bad news for the families of nursing home residents, who ache under restrictions that keep them from seeing their loved ones in person. Gov. Greg Abbott prohibited most visits to residents throughout Texas on March 15 (exceptions are allowed to provide essential services and "critical assistance," which includes being with loved ones at the end of life, often called "compassionate care"). Experts say continuous isolation from family and friends can harm those residents' mental and physical well-being; it certainly hinders monitoring of their condition.
Patty Ducayet, the state's long-term care ombudsman, told the Chronicle she is very concerned about the mental and physical health of residents due to current COVID-19 restrictions. "I truly believe there are potentially massive declines in health across residents in our facilities and, frankly, we just don't know it yet," she said.
But the price of reconnection could also be tragic. "The evidence seems very clear that once an outbreak has taken hold of a facility, it's very hard to stop," Escott told reporters on June 10. The numbers bear this out; 59 local nursing home residents had died of COVID-19 as of June 26, an APH spokesperson told the Chronicle, more than half the county's reported COVID-19 deaths at that time. Escott later told us he would love to find a way to allow safe visitation, but "at the same time we are considering the possibility of loosening those restrictions, our cases are skyrocketing."
What People Need to Know
The widespread testing effort was one of many COVID-19 responses that Council initiated on May 7; a month later, the city's adopted COVID-19 Spending Framework set aside $3 million for ongoing testing, a study by UT Dell Medical School's Design Institute for Health, strike teams, and financial support for nursing home staff. Council Member Ann Kitchen told the Chronicle she is "comfortable" with this allocation, as the city expects state funds to cover some costs and contingency funds are available within the framework as needed. Initial results from the Dell Med study, which will seek to identify system improvements in nursing homes, are due in July.
As for information sharing and transparency, there is still more to do. Kitchen told the Chronicle she's been asking for a public COVID-19 dashboard for nursing homes, which would show trends and be updated regularly. "The lack of a dashboard at this point is an issue from my perspective. So that needs to be fixed. I can't keep asking one-off questions. More importantly, the reporting is [needed] so the public can see and understand what the situation is," she said. Kitchen also said she was pleased that APH has developed recommendations for ongoing testing of nursing homes (reported in a May 21 memo to Council) but told the Chronicle she doesn't know to what extent they are being followed, adding that this is also "part of what we need to know."
Regarding a dashboard, an APH spokesperson told us, "We are working with our tech team to get the scope of the work done," but could not give a timeline. With respect to the city's position not to share specific information about Austin's nursing home COVID-19 cases (pending an opinion from Texas Attorney General Ken Paxton), Kitchen said she is pushing for an expedited decision. "My opinion is that we should be able to provide information about the names of facilities," she said.
Other data sources remain spotty and confusing, leaving people in search of safe nursing home services in the dark. Federal COVID-19 data, first posted June 4 by the Center for Medicare and Medicaid Services (CMS), shows that just three Austin nursing homes have suffered COVID-19 deaths (of the 26 that reported data) and that just 106 residents and staff have tested positive in total. The data shows one death at Riverside Nursing and Rehabilitation Center in Montopolis; eight at Stonebridge Health Rehab in Southwest Austin; and eight at West Oaks Rehab and Healthcare Center on Slaughter Lane.
That information doesn't come close to matching what APH has reported regarding local outbreaks, including the nearly 60 deaths and more than 500 positive cases among residents and staff. That's likely because CMS allows facilities to opt out of reporting COVID-19 cases and deaths that occurred before May 8, when the federal reporting rule took effect. While APH has diligently tracked COVID-19 data and reports it's conducted tests at 33 nursing homes to date, it continues to mask the identity of facilities where outbreaks occur, citing privacy concerns and state law.
"Holding Him Hostage"
The Chronicle spoke to relatives of three residents who had been or still are at the Riverside facility to learn more. We heard that COVID-19 has been present there since at least early April, and that dozens of infections have occurred, but still have no reliable data about COVID-19 deaths at Riverside or elsewhere. Brooke Ladner, spokesperson for Regency Integrated Health Services, which operates Riverside and 56 other Texas nursing homes, did tell us by email that as of June 20, "we have no positive patient cases at the Riverside location."
Stephan Morales, 71, died at the Riverside facility on April 16 after becoming ill with a fever and a cough, then testing positive for COVID-19, his sister Delia Satterwhite told the Chronicle. He had lived at Riverside since 2016, she said, and she had visited regularly to bring him food and check on him. After visits were halted in mid-March, she was still able to get some information about him from nurses over the phone.
But once Morales was diagnosed with COVID-19 in early April, she had great difficulty getting updates. Staff would not answer the phone or would put her on an extended hold, prompting her to finally threaten to call the police if she could not get someone to come to the phone. "At that time I felt like OK, y'all are holding him hostage, because you're not giving me any information on him," she told us.
Satterwhite said she still has questions about her brother's death that remained unanswered by Riverside management: "To this day, [they] still have not returned my call." Nor, she says, was she informed she could visit Morales before he died, as allowed by the governor's exception for "critical assistance." "If I would have had a chance to just be able to go in there and at least hold his hand, one last time. Yeah, I would have done it. ... They never offered nothing," she said.
Franklin Hallinan, 74, entered the Riverside facility in February 2020 after suffering a stroke, his stepdaughter Dawn Maracle told the Chronicle. She was never happy with the care he received there – staff would fail to take him to the bathroom or to help him eat – and communicating with the facility was difficult. But she thought the placement would be temporary.
Then on April 16, Riverside called to tell Maracle that her stepfather had been taken to an emergency room, suffering problems with his oxygen levels and heart. Hallinan tested positive for COVID-19 after he was admitted, and he spent two months in the ICU, Maracle said; he is still hospitalized. Though he is still recovering from his stroke and it will be hard to take care of both him and her elderly mother at home, Maracle said she won't place him at a nursing home again without knowing where COVID-19 infections are occurring.
"I don't know what the standing is on any of them. I can't trust it. I can't believe it," she said. "I'm going to be buried for sure under the responsibility, but that seems to be the only choice at this point that is really in his benefit or my mom's benefit."
Cissy Sanders, a single mother and events manager for a high-tech company, told the Chronicle she's spent many hours making phone calls, writing emails, and conducting research online, trying to marshal resources and focus attention on the critical needs of the residents of Riverside, including her 70-year-old mother. (Sanders declined to share her mother's name due to privacy concerns.) "This has become literally almost a full-time job for me," she told the Chronicle. And she's done it for one reason, she said: "I don't want my mother to contract the virus and die."
Sanders' fears are understandable; she told us that as of June 5, her mother was one of only 19 Riverside residents who had not tested positive for COVID-19. The facility had 68 occupied beds (according to CMS data) at that time. Since getting a call from Riverside on April 8 informing families of three positive cases, Sanders has been pushing both Regency and public officials for action.
Her efforts helped spur Council's May 7 resolution (spearheaded by Kitchen) requiring testing of all Austin nursing home staff and residents; Abbott announced a similar statewide mandate on May 11. In late May, Regency finally began doing weekly calls with family members, after weeks of pressure. Sanders said: "They are not transparent. They do not communicate. They did not do what they were supposed to do to ensure the safety of the residents." Sanders later told us that while communication with Riverside has improved, management still has not told residents or families how many COVID-19 fatalities have occurred.
In response to the Chronicle's request for comment about these families' concerns, Regency's Ladner wrote: "... we do not comment on third party allegations. We understand these are very difficult times for all involved and transparency is critical. This is why we communicate with families from our facilities on a weekly basis. Families have also been provided with administrators' personal phone numbers and they are encouraged to call them with any concerns."
Making Bad Things Worse
The COVID-19 outbreak has intensified the challenges residents and families already encounter with below-par nursing home care. Riverside receives poor ratings on Nursing Home Compare, a federal website that compiles information on quality and shows the facility was fined more than $60,000 in 2019. Riverside has received numerous citations in recent years and also been flagged for abuse.
According to Regency's Ladner, her company took over the facility in April 2019 and "Riverside continues to implement many changes to rectify previous complaints, including a full change of administration." The facility is owned by Hamilton County Hospital District, which operates the community health care system in that rural county west of Waco but also owns several facilities elsewhere; its involvement appears limited. District Administrator Grady Hooper explained to the Chronicle in an email that "we are license holders for nursing facilities and play a supportive role in quality reviews, while Regency Integrated Health Services is contracted to oversee day-to-day operations."
Riverside is hardly unique. Experts say that U.S. nursing homes have a long history of uneven quality that is almost always linked to staffing shortages due to low pay and difficult working conditions. As the pandemic has unfolded, public health officials have emphasized the importance of sufficient personal protective equipment and access to testing to keep the deadly virus away from nursing home residents. Those resources can't be effectively deployed – and residents can't receive the basic attention and care they need – if facilities don't have adequate and well-trained staff.
The lack of critical leadership, support, and resources for America's nursing homes was highlighted in a June 25 Congressional hearing chaired by U.S. Rep Lloyd Doggett (D-Austin) – who leads the House Ways and Means Committee's health subcommittee (which oversees CMS and thus nursing home regulation) and whose district includes Riverside. The hearing was designed to identify actions Congress should take to best protect nursing homes going forward.
Testifying before Doggett's panel, attorney Toby Edelman of the Center for Medicare Advocacy was especially critical of reduced oversight during the pandemic. "The rollback of the standards of care, the complete lack of information and no oversight – there has been nobody in nursing homes for three months. Not families, not the ombudsmen ... and not the state or federal surveyors. There's been nobody looking at what's happening. And now we see the results," she told the committee. In a statement to the Chronicle, Doggett vowed he would "continue to push this Administration to provide the testing and PPE resources our nursing homes desperately need" and would introduce legislation "to address the many gaps Trump has created in the regulation and oversight of nursing homes."
Though also deeply concerned about the suffering of residents and families caused by COVID-19, longtime advocate Brian Lee, executive director of Families for Better Care, believes this moment could be an opportunity to bring about real changes that are long overdue. "If there is a silver lining to the COVID crisis," it's that it shines a spotlight on what is really happening "in those dark corners of the industry," he told us, and may lead ultimately to more accountability.
Lee strongly advises families and residents to speak out, even if they fear retaliation. "The squeaky wheel gets the grease," he said. "If you say nothing, then nothing's going to happen. You're going to have more of the same. You're going to have more problems down the road. ... But if you say something, you speak up and talk to people, talk to reporters, talk to the ombudsman, talk to the inspectors, there is an opportunity that they get better."
Part of the Care Team
In-person visits to Austin nursing homes remain on hold, although new state guidelines may be on the way. CMS issued guidelines for reopening facilities in May, which call for declining transmission in the community (clearly not happening here) and for nursing homes to have had no new cases in the prior 28 days, along with adequate staffing, supplies, and access to testing.
Even so, there are opportunities for greater contact under existing rules, such as when a resident is dying – something family members (like Delia Satterwhite) may not know and nursing homes may not be honoring. That possibility concerns state ombudsman Patty Ducayet, who told the Chronicle she has heard about families only being allowed one end-of-life visit, of hospice providers being denied access, and of a clergy member not being allowed to provide religious services – actions she finds questionable, if not in violation of existing state requirements.
Ducayet recently made recommendations to the Texas Health and Human Services Commission regarding visitation policies; she feels strongly that long-term care facilities should be required to allow visits if established criteria are met. "This should not be an option that facilities get to decide about. We have, as a state, given facilities a lot of discretion about how they implement restrictions," Ducayet said. "Some facilities have not allowed things to happen that are allowable by the laws." She has also recommended that compassionate care visits be defined to include not just end-of-life situations, but cases in which residents have disorders that cause progressive decline, like Alzheimer's, and whenever there are significant changes in the resident's physical, mental, or psychosocial status. On June 23, CMS clarified its position that "compassionate care" does not just refer to end-of-life.
Dr. Bruce Troen, chief of geriatrics and palliative medicine at the University at Buffalo, told the Chronicle "Family members are often essential members of the clinical care team for older adults who are so frail, and especially those with dementia." He thinks a designated family member who is "able and willing to follow all the procedures" that apply to staff could safely go into nursing homes on a regular basis. Troen also said COVID-19 can be kept out of nursing homes, with "intensive, appropriate, and persistent procedures," that include frequent testing of staff. "It can be done, but it requires a lot of resources and understanding and working with family members and the community," he said.
Escott told the Chronicle he has let facility medical directors make their own clinical decisions on what represents "critical assistance," but noted, "That's not always going to be a clinician. If there's a mental health issue going on with a patient and, in the judgment of the medical director, that family member visit is critical to the care, then it should be allowed."
Escott also told us APH has purchased COVID-19 rapid test kits and is working with nursing homes to find ways to enable more frequent, less invasive testing (like saliva testing). "We are encouraging the facilities to test their staff on a regular basis" and trying to "develop some implementation support for them," he said.
He emphasized that real progress has been made locally toward protecting nursing homes from COVID-19, especially with regard to better infection control and the use of PPE. "I want to applaud the work of nursing homes and the staff there ... to really be impactful on this outbreak," he said. Of PPE, Escott said, "We seem to be doing OK right now. But if we see surges happening in major cities across the state and across the country, that supply will diminish again."
Meanwhile, Cissy Sanders, who feels her mother is still "a sitting duck" at Riverside, is on a mission to get rapid testing in place at every nursing home in Texas. She said she's been told that staff at Riverside is being screened and tested only when symptomatic. "These protocols did not keep the virus out of the facilities back in March ... to use them again and hope for different results is irresponsible," Sanders wrote in a recent email to Abbott and his "strike force" team.
Updated CDC guidelines call for testing practices that "aim for rapid turnaround times," defined as 48 hours or less, prompting Sanders to ask when a "statewide nursing home testing plan that complies with this guidance" will be implemented. So far, none of the public health or elected officials Sanders has contacted has been able to answer her question, she told us – adding she "will keep at it until I get an answer."