By MITZI E. MCFATRICH
Kansas Advocates for Better Care
We see the images — older adults in beds and wheelchairs, separated by windows from family members holding signs with messages of encouragement and love. We share the sadness of countless elders dying alone without the comfort of family, denied essential human contact and human rights at a time when these matter the most.
In March, the federal Centers for Medicare & Medicaid Services blocked visitation to residents of nursing facilities except “for certain compassionate care situations” at the “end of life.” Kansas followed suit for other adult care facilities. Sadly, many facilities misinterpreted this to mean only at the very end after a person had slipped into non-responsiveness; other facilities simply didn’t allow family in at all.
Unlike the rest of us, adults in nursing homes have no say in how or when they will see family and friends or gather for a meal. Their legal rights, while not formally suspended, are suspended in practice by the policies and decision-making protocols issued by government agencies managing the pandemic.
For 45 years, Kansas Advocates for Better Care has been helping elders and families advocate for their rights, find better care, and stop abuse in long-term care. Each year we respond to thousands of people who need help, training and resources.
There is understandable fear about opening up. Older adults with chronic conditions living in close quarters are at higher risk and feel the impacts more harshly. But there is injury too from continuous isolation. Falls and confusion, weight loss, depression and anxiety all have risen with isolation.
In hindsight, we see what older residents and families have long known: Visits literally save lives. Not only do friends and family offer elders the social connection and emotional support we all need, they serve as essential monitors of care.
There is not always agreement about the way forward.
Emma, who has lived in a Kansas care facility for five years, was not even able to visit with friends who lived in the same facility. Depressed after months-long isolation with no end to restrictions in sight and no say in facility policies, she left to stay with family in a nearby state.
Kathy, meanwhile, is grateful for the maximum restrictions in her husband’s nursing home. Alarmed by COVID-19’s upward surge, she supports the restrictions, believing it is more important than ever to protect vulnerable elders.
So we must wrestle with competing imperatives of well-being. Older adults bearing the brunt of COVID-19 in nursing homes have legal and civil rights, yet current government guidance leaves decision-making to local health departments and facilities, with no requirement to seek input from the adults who reside within.
Safe visitation during COVID-19 is a complex but not unsolvable puzzle. Some of the basics are: adequate staff to provide care and assist elders in visiting with loved ones by phone, video, in a designated indoor room or outdoors; clear protocols for infection control; education, screening and logging of visitors just as is done with staff and elders; use of masks and appropriate protective equipment; disinfecting surfaces between visits.
Prior to the pandemic, few facilities operated at safe staffing levels of just over four hours of daily care for each resident, and inspectors found that 77% of Kansas facilities were not complying with standard infection control practices. The COVID-19 crisis underscores how understaffing dangerously increases the workload for nurse aides.
We are all living in ways unthinkable prior to this pandemic. But we are not living without choice or voice, nor should adults in long-term care facilities be asked to do so.
By law, every facility has a resident council. These resident councils could be surveyed for their input. Kansas Advocates for Better Care has asked the Kansas Department of Aging and Disability Services to direct local health departments and individual facilities to seek the input of residents (or, for those without capacity, their legal representative).
We have also requested that when state agencies are meeting with hospital and facility providers to define policies, resident voices be present through consumer legal or resident advocates such as the Kansas Long-Term Care Ombudsman.
It is time to recognize and restore residents’ right to essential visitors. As Kansas defines its path to reopening, government must engage with elders and learn what they believe are reasonable steps to address their well-being and safety.
Mitzi E. McFatrich is the executive director of Kansas Advocates for Better Care.