Families of nursing home residents are bracing themselves for another visitation shutdown as Covid-19 infection rates soar in parts of Western New York.
Some are frustrated with the state for the lack of flexibility in the rules, which only allow visitation for compassionate care situations, such as hospice and end-of-life care. Any nursing home in orange and red zones are required to shutdown visitation. Those in yellow zones can allow visitation if the facility is Covid-19-free for two weeks.
That’s not an easy feat, and Kristen Squillace knows firsthand.
Kristen Squillace, whose 90-year-old father has been in a nursing home for three years, said the one size fits all approach does not work. Neither she nor her mother has seen him in over a month.
“It’s inhumane to keep people away from their loved ones,” she said.
“This is not a prison.”
Squillace said she is confused about why the state doesn’t allow one family member visitation rights if they test negative for Covid-19, social distance and where a mask and other protective gear. She said her father has lost a lot of weight due to not eating enough in the nursing home and his wife had been bringing him home-cooked meals.
“Just because we can’t physically take care of him at home shouldn’t mean that we never get to see him again,” she said.
The state provided guidance to nursing homes Nov. 10 that states, for “nursing homes in red and orange zones, visitation is suspended except for in the following instances: compassionate care (i.e. end of life, hospice situations) medically or clinically necessary (i.e. visitor is essential to the care of the patient as determined by the facility and treating provider), and necessary legal representatives.”
The federal guidelines are looser, but there really isn’t a clear definition of “compassionate care” in either policy.
“While end-of-life situations were used as examples of compassionate care situations in previous CMS memoranda, the term “compassionate care situations” does not exclusively refer to end-of-life situations,” the federal guidelines state.
“For example, for a resident who was living with their family before recently being admitted to a nursing home, the change in their environment and sudden lack of family can be a traumatic experience. Allowing a visit from a family member in this situation would be consistent with the intent of the term “compassionate care situations.” Similarly, allowing someone to visit a resident whose friend or family member recently passed away, would also be consistent with the intent of these situations. CMS cannot define each situation that may constitute a compassionate care situation.”
The federal guidelines encourage facilities to consult with state leadership, families, and an ombudsman, to help determine if a visit should be conducted for compassionate care.
“Also, while CMS acknowledges that compassionate care situations may extend past end-of-life situations, we still believe these visits should not be routine, and allowed on a limited basis as an exception to restricting visitation.”
The guidelines instruct facilities to take all precautions such as having the family member screened, masked, and following social distance while also performing proper hand washing if they are allowing a compassionate care visit.
“To help with these visits, nursing homes may decide to create safe spaces within the facility, such as see-through separation walls or other such areas so that residents may physically see their family members (if outside visitation is not conducted),” the federal guidelines state.
Squillace’s father has dementia and she said he should be allowed one compassionate caregiver, which would be her mother.
“That gives my mom a sense of purpose because that’s the only thing she can do besides calling five times a day to be able to care for her husband,” she said.
A spokesman for Terrace View, where Squillace’s father resides, said they are following the state’s “very stringent” guidance.
“Terrace View residents face a variety of serious conditions and almost all nursing home residents could benefit from family visitation, but visitation currently can only be allowed at end-of-life or if it is determined that a resident is in crisis and in need of immediate family support,” the spokesman said.
“It is a clinical decision balanced with our need to comply with the law and keep our residents safe from COVID-19.”
While the state has pumped out $1 million in funding so that nursing homes can set up virtual visits with families, Squillace said those have been a struggle with her father and have not been worthwhile.
Even the organization that represents nursing homes believes the state needs to find a middle ground.
“I share each and every frustration that the family members and loved ones of our residents have,” said Stephen Hanse, president of the New York State Health Facilities Association, which represents more than 425 nursing homes and assisted-living facilities across the state.
“And to completely restrict in-person visitation has such enormous mental and physical health wellbeing issues on our residents and their family and loved ones.”
Hanse in October mailed both Gov. Andrew Cuomo and state Health Commissioner Howard Zucker a letter asking for more flexibility on visitation policies.
“We certainly understand the need for the State to ensure the safety and well-being of all these individuals,” Hanse wrote.
“At the same time, however, these objectives need to be balanced against the federally guaranteed right of residents to receive visitors, given the well-documented studies which conclude that prolonged and enforced isolation from families and loved ones can have severe psychological, mental and physical effects on residents, including death.”
Mary Mallon knows firsthand how devastating the policy can be. She lost her mother this year at age 91 in a nursing home before she had been able to visit her.
Mallon said a friend recently asked her if she should place her loved one in a nursing home and Mallon bluntly told her, “If you’re going to put him in a nursing home, say goodbye to him before you do because you’ll probably never see him again.”
“Not allowing people in to see them is wrong,” she said.
“They’re saying, well, we need to save their life. At what expense? If emotionally they are feeling abandoned or unloved or unwanted, how is that helping their physical condition?”
News 4 Investigates featured both Mallon and Squillace in a September article about the state’s strict rule that no visitation is allowed unless the nursing home was Covid-19-free for 28 days. Less than a week after the story, the state reduced the visitation holding period to 14 days.
This time, however, the state is sticking with the same plan.
“Our decisions will continue to be driven by data and science, and now is not the time for anybody to let their guard down,” said a Department of Health spokesman.
“While we understand the challenges this pandemic has caused nursing home residents and their families, the state remains committed to protecting nursing home residents and front line workers from this unforgiving disease.”