Bool, a Phoenix resident, had just called back after a long interview with New Times on Thursday, and it turned out her fears were confirmed. Her 89-year-old father, Herbert Bool, who's a longtime Arizonan and philanthropist, had tested positive for the coronavirus at his assisted living center — Dignity Health Arizona's Huger Mercy Living Center.
Bool's sister also told Bool that new testing this week at the center had confirmed that 25 of the elderly residents were positive for the virus. She had to cut the conversation short again and get back to another sister.
Bool is worried for her father's health, though so far there's been no indication that he's sick, beyond the dementia that caused him to move into the facility. She and her siblings haven't been able to see him since the center canceled visitations in March.
Bool believes that many in the metro Phoenix area — and elsewhere in the state — want to know a lot more about what's going in facilities like Dignity Health, which have been devastated by the pandemic disease.
The World Health Organization's European office estimates that about half of the COVID-19 deaths in Europe have been in care homes. The United States hasn't kept close track of deaths in nursing homes or other assisted living facilities, although new federal regulations in place as of today will shine a light on COVID-19 outbreaks at long-term care facilities through a publicly accessible website. The new rule won't apply to privately paid assisted-living facilities like Huger Mercy.
Arizona has a list of the number of known "congregate settings" that have experienced outbreaks, including assisted living and long-term care facilities; there were 83 and 47 deaths at those kind of facilities as of Friday, respectively, according to state data.
But officials have so far refused to share outbreak data at care facilities. That stance has angered some Arizonans, and sparked a lawsuit by a group of local media outlets to force the information's release.
In a statement to New Times, Dignity Health confirmed that Huger Mercy Living Center "has been impacted" by the pandemic, and indicated that some of its staff had also tested positive. It claims that it has been "enforcing universal masking" and taking other precautions for "weeks."
OutbreakHerb Bool and his wife, Betty, have been important contributors to the Desert Botanical Garden, St. Mary's High School, and other Valley organizations. His father came to Arizona in 1931 and started a successful garden business, which Herb Bool turned into a farm business, Suzanne Bool said. After suffering from memory problems, his brain became increasingly dysfunctional around 2012, she said. Family members checked him into Huger Mercy a few years ago.
Located near Glendale Avenue and Interstate 17, the place was humble, consisting of four 12-bed cottages. But, Bool said, "The people are nice. They look after him."
Huger Mercy Living Center falls under Dignity Health's Barrow Neurological Center. Its website describes the center as "a 48-bed, assisted living facility, providing directed care for persons living with Alzheimer’s disease and other dementias. Staff provides a state-of-the-art innovative dementia care program in a homelike setting with around the clock care, following a social, activity-based model."
Huger Mercy has been in lockdown mode with a no-visitor policy in March, according to Bool and its public Facebook page. Then family members heard earlier this month that a favorite staff member was sick. They heard from a staff member that a resident had come down with a fever, and all of the residents were then tested for the coronavirus. Confirmation of a problem came on May 5, when Huger Mercy's manager sent an email to residents' families informing them of the outbreak.
Bool said she and her family have gotten only limited information from the facility.
"Apparently, the staff was only given protective equipment once they found out they had someone positive there," Bool said. "They won’t even tell my mom how many employees have tested positive."
Some employees were scared to show up for work, her siblings heard. A family member was told by one of the staff that they could pull Herb Bool out of the facility, but there was a waiting list of prospective residents who wanted to move in, and he would be added to the list if the family wanted to put him back in.
She wasn't sure what the family would do next, she said on Thursday morning, but she expected the May 5 test results to come in that day.
"My mother's calling," she suddenly told New Times. "I'll bet she's calling to say he's positive. She wouldn't call otherwise."
She didn't answer and continued the interview. Then her sister called. Sounding shaken, Suzanne Bool said she would take this call, adding that it, too, must mean that her father had tested positive.
She was right. More than half the residents at Huger Mercy are positive now, she said.
New Rules for SomeDignity Health, a large health care company that also runs several hospitals and urgent care centers in the Phoenix area, including St. Joseph's Hospital and Medical Center, had not previously announced the outbreak.
But it had a statement ready about 30 minutes after New Times called to ask about it. The company did not answer a list of questions related to the outbreak, like whether a waiting list for moving into the facility exists and if so, whether the families of people on that list had been informed of the problem. The company would also not disclose the number of positive cases or deaths at Huger Mercy of either residents or staff members, or how many other Dignity Health Arizona facilities were experiencing outbreaks.
"Dignity Health in Arizona’s assisted living facility, Huger Mercy Living Center, has been impacted by the COVID-19 pandemic," said Carmelle Malkovich, communications director, in an email on Friday.
All residents have been tested, she continued, and those tested have been isolated.
"Out of an abundance of respect for our residents and staff, we will not be releasing the number of COVID-19 positive cases at our facility." — Spokesperson for Dignity Health in Arizona
"All symptomatic staff members have undergone testing and those whose results are positive and anyone showing signs of an illness have been placed in quarantine," Malkovich said. "For weeks, we have been screening staff members and residents daily, limiting visitors, and enforcing universal masking. We are closely following all infection control protocols and will continue to take significant steps to ensure the safety of our residents and staff. This has always been and remains our top priority. We are and will continue to provide timely and transparent information to our residents, their medical powers of attorney, and our staff."
But the public is not privy to such information unless someone like Bool reveals what's going on. Families of care home residents and employees have leaked news of several outbreaks in Arizona, such as one reported by ABC-15 News (KNXV-TV) in late April at Pennington Gardens in Chandler, in which 16 residents have died. Compass Living, the company that owned the home, told the station it had subsequently "ramped up personal protection use, cleaning, testing, and monitoring residents and staff for symptoms."
On Friday, the U.S. Health and Human Services Department published an interim final rule that activates regulations beginning today, including new reporting requirements for long-term facilities, skilled nursing facilities, and nursing homes that are Medicare and Medicaid service providers. Such facilities were already required under previous COVID-19-sparked rules to have written standards on who to contact in possible infectious-disease incidents. Now they must collect and turn over "Suspected and confirmed COVID-19 infections among residents and staff, including residents previously treated for COVID-19; Total deaths and COVID-19 deaths among residents and staff; Personal protective equipment and hand hygiene supplies in the facility;" and other information.
The federal agency writes in its rule published today that reporting COVID-19 data keeps the public healthy, and that the public deserves to know what's going on.
"The information provided may be used to inform residents, families, and communities of the status of COVID-19 infections in their area," it states. "We believe that this action strengthens CMS’s response to the COVID-19 pandemic, and reaffirms our commitment to transparency and protecting the health and safety of nursing home residents. CMS anticipates publicly posting CDC’s NHSN data (including facility names, number of COVID-19 suspected and confirmed cases, deaths, and other data as determined appropriate) weekly on https://data.cms.gov/ by the end of May."
It was not immediately clear whether Huger Mercy would fall under these guidelines. Asked specifically about the federal rule on Friday, Malkovich responded back with an addendum to Dignity Health's statement:
"We report all required data to government agencies and remain committed to providing them with any requested information related to this matter," Malkovich said. "Out of an abundance of respect for our residents and staff, we will not be releasing the number of COVID-19 positive cases at our facility, except as required by law and Executive Order. We understand that this is a matter of public health, however, this decision aligns with privacy considerations for our residents and the professionals who care for them.
"We care deeply for our residents and staff members. We do not take this matter lightly and are doing everything in our power to ensure our residents receive the best and most compassionate medical care."
Transparency or Privacy?
Arizona Governor Doug Ducey and Dr. Cara Christ, director of the Arizona Department of Health Services, have argued that the privacy rights of care home residents should come before public disclosure.
“You see them as places, I see them as people," Ducey said last week at a news conference, in response to a reporter's questions about transparency regarding the homes.
Robert Lane, administrative counsel for the DHS, told the Arizona Republic for a May 5 article on the special action filed in Maricopa County Superior Court against the state filed by the paper, that the state has "overarching legal and public health responsibilities, including a responsibility to protect the privacy of Arizonans' health-related data," and cited a state public-health confidentiality law.
Dana Kennedy of the AARP, a nonprofit advocacy group for people 50 and older, has been a strong advocate for transparency at nursing homes with coronavirus infections, and presents a different view.
Workers at such facilities are often underpaid, not well-supplied with personal protective equipment (PPE), and may work more than one job, she said, adding that testing at care homes has also been disappointingly sparse.
The new federal rule is "absolutely a step in the right direction. The more information we can empower families with, the better informed they are with the decisions they need to make ... The bottom line is, more transparency during a time of crisis is more important than ever."
Seeming to bow to pressure for more transparency, Governor Doug Ducey issued an executive order on May 4 requiring long-term care facilities to notify residents and their guardians of COVID-19 cases within 24 hours of a positive test.
Suzanne Bool gleans what she can from Huger Mercy's private Facebook site for family members and guardians. The facility has talked about getting more PPE from St. Joseph's Hospital, and said that the hospital had also sent over two more nurses.
But, Bool said, "I think the horse has already left the barn. If my dad is strong, maybe these measures will help him. I hope so."