Editor’s note: This story contains details of nursing home life that could be disturbing to some readers.
By Thomas Goldsmith
Appalled when he saw blood mixed with the waste in his mother’s nursing home toilet, Tim Wall called 911 emergency workers as well as quizzing staff at her Kernersville facility to try to get answers.
The information he got from EMTs and care providers during the Jan. 5, 2021 incident shocked Wall even more, he said in a phone interview. He quoted a care worker who said, “See, your mom’s incontinent and we’ve been changing her all day and we haven’t seen any blood. That must have been from yesterday.”
Wall said, “You mean she was bleeding like that yesterday?”
After Wall, 58, of Kernersville, spent most of 2020 pushing the management at his mother’s skilled nursing facility for visitation, he had been given “compassionate care status” and finally allowed back in to visit her in September. But when Peggy Wall’s facility had an outbreak of coronavirus in December he was barred once again. She was then moved into a special wing of the facility for people who had tested positive for COVID-19.
After long exchanges with the center and with DHHS officials, Wall was again allowed to renew visits, only to discover his mom’s alarming state of affairs.
The nursing home, Summerstone Health and Rehabilitation Center and its corporate owners did not respond to requests for comment this week.
Wall and countless others have worked for a year for removal or modification of the federally imposed, COVID-driven lockdown of nursing homes enacted on March 10, 2020. As the pandemic erupted, relatives and caregivers across the state and nation reported heart-rending scenes of long-term care residents who contracted COVID-19 and died alone.
The guidelines barred willing visitors until, in some cases, the end of life neared.
Federal regulators at CMS acknowledged the unintended consequences of its previous actions in new statements that accompanied the revised approach. The tone used seemed to reflect a recognition by President Joe Biden’s administration of the emotional and health-care burdens placed by the visitation restrictions.
“We acknowledge the toll that separation and isolation has taken,” the agency said in a statement issued on March 10, 2021, a year to the day after enacting the lockdown. “We also acknowledge that there is no substitute for physical contact, such as the warm embrace between a resident and their loved one.
“Therefore, if the resident is fully vaccinated, they can choose to have close contact (including touch) with their visitor while wearing a well-fitting face mask.”
Friends of residents speak out
A member of the advocacy group North Carolina Caregivers for Compromise, Wall and members of additional nonprofits — including the North Carolina Coalition on Aging and Friends of Residents in Long-Term Care — made their case through networking, media and communications throughout the pandemic, into this year. They urged regulators to give visitors at nursing homes plenty of time to provide care and support for their loved ones.
Representatives of the state Department of Health and Human Services and some long-term care industry interests were also key to discussions.
More residents have now been fully vaccinated, and hospital admissions and deaths from COVID of these residents have sharply decreased since the vaccine rollout started in late December.
Even as that’s the case, some questions have arisen about cases where both residents and potential visitors have been fully vaccinated, while some facility staff have not. Nationally, surveys indicate some gradual increase in the rates of vaccination among long-term care staff.
Nonetheless, the Centers for Medicare and Medicaid Services (CMS) announced a relaxation of some elements of the lockdown this past week.
Based on past experiences, advocates and relatives say, questions remain about whether and how the new guidelines will work.
“At first glance of the CMS revisions, it continues to be vague and open to interpretation by NC DHHS and then individual facilities,” said Pat Weaver, 76, a western North Carolina resident. She’s also a member of North Carolina Caregivers for Compromise and the caregiver for her husband, who lives in a nursing home.
Weaver said in an email that North Carolina lawmakers should adopt legislation to restore virtually universal visitation rights that couldn’t be canceled or modified by a governor or department head.
The longstanding North Carolina nonprofit Friends of Residents in Long-Term Care, known as FOR, offered a more upbeat assessment of the CMS changes.
“After a year of heartbreaking visitation restrictions, FOR is relieved to see the new CMS guidelines that allow indoor visitations in nursing homes,” executive director Lauren Zingraff told North Carolina Health News. “We are encouraged that these new guidelines will be the catalyst for family reunification.”
Decisions rest with top officials
The decision of when and whether to relax guidelines rests primarily with the federal health and human services department, which is the primary regulator for skilled nursing facilities (commonly known as nursing homes).
But relatives and advocates for older people have brought the issue to Gov. Roy Cooper’s office and to state legislators. Their action has included emails, phone calls and in-person visits, as well as virtual visits to the General Assembly last week.
On Feb. 22, as Cohen faced questions from a legislative committee, Rep. Phil Shepard (R-Jacksonville) wanted to know when his mother, in a skilled nursing home, would be able to receive visits again.
“She’s been there over a year,” Shepard said. “We’ve not been able to touch or see each other — we talked through a window.
“Her sister passed away last year and I had to call her and tell her on the phone about that. We couldn’t go in and personally discuss it.
Shepard told Cohen he had been barraged with questions about visitation from his constituents.
“When are we going to be able to work out something so that families and friends can go in and see their loved ones that are in nursing homes and pretty much have been imprisoned there for over a year?”
‘Against medical advice’
Tim Wall has told the story of his mother, an active church member who also ran a day care agency, as part of an all-out effort by advocates to effect change.
With EMTs on hand to corroborate what he’d seen, Wall was able to transfer Peggy Wall, 88, from the facility’s COVID-19 wing to a Winston-Salem hospital for treatment and eventual diagnosis with colon cancer. Facility nurses noted on Peggy Wall’s chart that Tim was upset and moved her against medical advice, he said.
Peggy Wall died in February in an area hospice, where caregivers had a much easier time visiting loved ones.
Particularly as vaccinations are more widely distributed and push down cases, hospitalization and death rates, increased visitation should completely replace the practice of separating vaccinated relatives from seeing those in long-term care, advocates said.
The new policy still allows for departures from that standard.
Burlington resident Bob Willson, 78, already had “compassionate care” status in November because his specific skills qualified him to make daily visits to wife Susan, 77, at a nearby facility. In Willson’s case, he convinced DHHS that he has the abilities to help his wife, a stroke survivor, with several functions including feeding, drinking, personal care, etc.
As he continues to press the case for the state to adopt broader visitation, he greeted the newly released federal guidelines with some skepticism last week.
“My first impression is that they are still treating nursing home residents with fragile kid gloves; almost as if full vaccination means nothing,” Willson said. “For now, what I’ve been telling anyone who will listen is that the unvaccinated tail is wagging the fully vaccinated dog in nursing homes and other long-term care facilities.”
The new guidelines say that nursing homes and other regulated facilities can let “responsible indoor visitation” happen all the time for all residents regardless of vaccination status, except for those in certain situations. Administrators could limit visitation for:
- People who have not been vaccinated if the rate of positive tests in the county is higher than 10 percent;
- People without vaccinations in facilities where fewer than 70 percent of residents have received full vaccinations;
- People with confirmed infection of COVID-19, whether or not they have been vaccinated, unless they have been released from precautions based on transmission; and;
- Those under quarantine who have not reached the criteria for release.
“Visitation can be conducted through various means based on a facility’s’ structure and residents’ needs, including in resident rooms, visitation spaces, and outdoors,” the CMS statement added. “Given the ongoing risk of COVID-19 transmission, CMS continues to recommend facilities, residents, and families adhere to the core principles of COVID-19 infection control, including maintaining physical distancing and conducting visits outdoors whenever possible.”
Relatives with “compassionate carer” status can visit at any time, CMS said.
Rose Hoban contributed to this article.