Families, public plead for more information as COVID-19 deaths soar at nursing homes
April 19-- Apr. 19--Dawn Diaz and her stepfather walked the grounds of the Kansas City, Kansas, nursing home trying to find the right window of the right room.
Even if just for a few minutes, the two would get to see Diaz's mom, Deborah Barker, who suffered a massive stroke seven years ago and has lived at Riverbend Post Acute Rehabilitation for several years.
At least they could see her face and she could see theirs.
"They opened the window and I see three staff members in full protective gear around my mom," said Diaz, whose visit to Riverbend was coordinated with the staff. "That's the reality there. You see it right there in your face."
That was April 8, the day before Diaz would learn her mom tested positive for COVID-19. Riverbend's statistics stood then at 48 residents and eight employees testing positive. Six residents had died so far.
Ten days later, the number of cases had more than doubled and deaths had tripled, climbing to 19.
Once inside the KCK facility, the coronavirus had spread rapidly, infecting almost everyone in its path. The largest outbreak in Kansas, it shows how difficult and tragic the battle can be. And it has raised questions for many families about what was done to stop it.
Riverbend is hardly alone.
Seventeen bodies were found in a New Jersey nursing home last week. Authorities described it as a "makeshift morgue."
In Massachusetts, COVID-19 killed 30 residents in one nursing home. Deaths in nursing homes make up about half of the 1,245 deaths in the whole state.
In Missouri and Kansas, more than 100 facilities have reported cases. On Friday, the Kansas Department for Health and Environment told The Star there have been 13 clusters of the virus in long-term care facilities totaling 246 cases.
The deaths at Kansas facilities reached 41 Friday, accounting for nearly half of the state's total number of fatalities from COVID-19.
From the start of this pandemic, it was clear that nursing homes and their residents would be among the hardest hit. In late February and early March, 37 people linked to Life Care Center of Kirkland, Washington, died with COVID-19.
And now, the scene is playing out across the country.
"I think it's just one of those fires that just almost can't be stopped," said Dr. Allen Greiner, the chief medical officer for the Unified Government of Wyandotte County and Kansas City, Kansas. "Unless you somehow had a crystal ball to know who's got the virus in them and who doesn't."
Nursing homes and other long-term care facilities were perfect targets for the virus, experts have said. Filled primarily with elderly residents in poor health living close together, with staff providing close care, often without the necessary resources for something of this magnitude.
Many of the facilities, including those in Kansas, previously received low marks in inspections from the Centers for Medicare Medicaid Services. Riverbend was last inspected in January, just 11 days before the first reported coronavirus case in the United States. The facility received two stars out of CMS' five-star rating system for health inspections. It gave Riverbend the same two-star score for staffing levels.
Riverbend, in the midst of the crisis, has had to put out a call for more workers.
But even upscale, well-staffed facilities can find it hard to contain the virus with older populations that have other health concerns.
Gayle Doll, director of the Center on Aging at Kansas State University, said it's not fair to put the blame on nursing home workers. She wishes staff inside those facilities were getting the same outpouring of support as health care workers at hospitals.
"Every day they put their own lives and the lives of their family at risk, because of their exposure," Doll said. "I think nursing homes are being bashed right now when they are working harder than they ever have in their life."
Family members like Diaz just want to know what's happening with their loved ones. It's hard not knowing what's going on inside the facilities that are saddled with staffing shortages, testing delays and not enough protective equipment.
Relatives say they feel powerless and clueless regarding what loved ones are going through.
"I'm very concerned that she doesn't have the ability to communicate with me," said Diaz, a social worker. "They are telling me she doesn't have a fever and she's fine and normal.
"Right now, me and my dad are at their beck and call for the truth. My mom can't tell us if she's having symptoms inside."
Public information during a public crisis
More than half of the nursing home COVID-19 cases in Kansas come from two facilities, Riverbend and Life Care Center of Burlington.
But there have been 85 cases, and 16 deaths, in 10 long-term care facilities in Johnson County as of Friday, officials said.
Three facilities combined -- Lakeview Village, Homestead of Olathe Memory Care and Forest Creek Memory Care -- had seen more than 30 coronavirus cases and at least seven deaths as of a week ago, according to county health officials at that time.
But the public doesn't know the names of all the facilities or a breakdown of the number of cases each is dealing with because the Johnson County Department of Health and Environment won't release that information.
Dr. Sanmi Areola, director of the department, said he is protecting people by not giving out specific information.
"Typically, JCDHE discloses the most information possible without compromising the privacy of the people impacted," Areola said in an email. "If there is a public health threat to the community, people will be notified immediately and given instruction on next steps. In this case, there is no threat to the general public.
"There are no additional public health benefits to be gained from sharing this information."
Mitzi McFatrich, executive director of Kansas Advocates for Better Care, disagrees. The public -- including family members who have relatives in a certain location or who are needing to find a facility for a loved one -- should know where outbreaks are and what facilities are dealing with the virus, she said.
The state of Kansas should provide that information online, in one location, like some other states have, she said.
"It's very concerning the lack of public transparent information," McFatrich said. "I can't really think of a good reason that that information shouldn't be public and transparent.
"This is a public health crisis, don't we need clear public health information? ... Why wouldn't we be including this key piece of information?"
In Olathe, where the corporate office for Bickford Senior Living is located, executives had this very conversation last month. The company, which operates 63 assisted living properties in 10 states, had already dealt with several cases in Illinois and Iowa. They had tough conversations, including ones around transparency.
"We asked ourselves when this was going on, one fundamental question," said Andy Eby, caregiver and owner of Bickford Senior Living. "If we were a resident or if we were a family member, what information would we want? What would we want to know?
"We would want all the information we could get."
On April 1, each Bickford facility website posted specific information about COVID-19. If a facility had a case, that was put on the home page and identified as active if the residents still had not recovered.
The three locations in the Kansas City area had no cases and still haven't.
"You've got to give the information, put it out there and not play the hide and hope game," said Eby, who wants other nursing and assisted living facilities to do what his company has. "The public, and families, I think in times of crisis they value truth."
How did it start?
The first major nursing home outbreak in Kansas was at Life Care Center of Burlington, which is owned by the same company that owns the Washington facility with the three dozen deaths and a KCK facility that accounted for Kansas' first COVID-19 death.
It appears to have started with an employee whose husband was ill with the virus. Early on, because the woman works at a nursing home, she was tested, said John Shell, Coffey County's health officer.
She tested positive.
"She was asymptomatic the whole time," Shell said.
With her being over 50, Shell said he would assume that she would have symptoms, but she never did.
"It was a reality check for many."
In Wyandotte County, Greiner and other health officials are still investigating to make sure they know how the initial exposure of the virus occurred at Riverbend. They have worked with the staff there and reviewed and analyzed what has been done inside the nursing facility at 7850 Freeman Ave.
The facility has taken "appropriate steps" that the health department would recommend, Greiner said.
"There is no smoking gun here for Riverbend," Greiner said. "No 'oh they should have done this and this, or this and this.' Hindsight is 20/20.
"I don't think we have, 'This is a big mistake you made' that led to this."
What would have been good to know earlier, Greiner said, was that a Riverbend employee had come down sick and went to the ER at the University of Kansas Hospital a day after he worked a shift at the facility.
"We would have liked to know when that employee went to KU," Greiner said.
But according to information released by the health department on Friday, Riverbend didn't know that either. The facility wasn't notified about that positive test result until three days after the test was taken, the department said Friday.
Here's how the timeline from the health department spells out how some residents likely were exposed to the virus:
On March 27, an employee at Riverbend reported to work with a cough and fever.
In the three days before, beginning on the 24th, the worker had reportedly begun experiencing the symptoms associated with the coronavirus, according to the timeline Greiner released on Thursday.
Health officials in Wyandotte County now believe that many residents at the nursing facility were exposed to the employee during that March 27 shift.
On March 29, the employee went to the ER at KU and was tested for the virus. The next day, on March 30, the hospital received the result, which indicated the employee had tested positive.
The Kansas Department of Health and Environment and the Unified Government's health department were notified. UG health officials, who didn't know where the patient worked, tried unsuccessfully to reach the person, the timeline said.
On April 1, Riverbend notified the health department that an employee and resident had tested positive, as required, and that 20 residents had been tested. On the evening of April 3, county officials said that 17 residents and two employees had tested positive for the virus.
Earlier that day, one resident -- Carl Brewster, 88 -- was released from Riverbend. He was scheduled to go home the next week, but he called his son early that afternoon and said staff told him he was to be brought home earlier.
Two days later, on April 5, Brewster died at his home. He was tested for the virus after his death. And his family was told on April 9 that he had COVID-19. His son and daughter-in-law have since tested positive for the virus.
"That's certainly concerning," Greiner said. "... I don't know all of the details on what his clinical status was when he went home."
But it's likely that Brewster's case -- and many others -- will be revisited.
Greiner said they'll be doing "some chart reviews" in as many cases as "we possibly can."
The goal, he said, is to do a post review to see if anything can be learned from what has occurred with the outbreak at Riverbend.
"To try to piece together a little bit more of what may have been early indicators that any one of us might have missed," he said. "Normally we would never try to do some sort of chart review like this.
"I hope we glean more information. Not to point fingers, but to help us learn from this."
Getting an update
Some relatives, like Diaz, found out about the outbreak at Riverbend from a media report. Some found out from their loved ones inside the facility.
Many have wondered why Riverbend officials haven't communicated more.
"I feel like maybe they didn't want to say something until they knew they didn't have a choice but to say something," Diaz said.
On April 10, Riverbend Administrator Cory Schulte and Director of Nursing Maureen Purvis started sending out daily updates. Those updates include the progress at the facility and continued struggles with some cases. They also share gratitude for the workers and community.
They don't include the number of cases or deaths linked to the facility.
Diaz' stepfather calls Riverbend every day around noon to check on his wife. "I know my dad is really sick about it," Diaz said, referring to her mom having the virus.
Before the pandemic, Diaz said he would take public transportation -- he doesn't drive -- nearly every day to go sit with his wife.
"It's an old-fashioned, strong love," Diaz said of the couple.
As she's unable to see and communicate regularly with her mom, there's one thing that has stayed with Diaz since that day she saw her through the window. The image of those workers, in protective gear, helping her mom.
"Seeing staff willing to come to work every day, knowing their health is at risk, that speaks a lot for them," she said.
Last week Diaz called Riverbend herself to check on her mom. She was doing well, the nurse said.
And just like she does after every call, Diaz asked the nurse to pass along a message when she saw her mom.
"Could you please tell her her daughter called," Diaz said, "and she loves her?"