‘The isolation is killing them’: Nursing home residents need visitors despite pandemic, Pa. group says

Christine Collins knows dementia is rapidly stealing her mother’s final days, robbing her of precious hours with her family and also care they could provide for her.

But so far, dementia hasn’t counted as an end-of-life situation or sudden medical decline that would justify in-person visits with the 94-year-old, who lives in a nursing home.

“She is actively dying every single day. I don’t know when my last day with my mom is. Are they going to wait until she’s in a coma?,” said Collins, who lives in York County.

Collins hasn’t been in the same room with her mom since March, when the state shut down nursing home visitation because of COVID-19.

She’s part of a growing movement of people in Pennsylvania running out of patience with restrictions that prevent them from hugging or holding their loved one’s hand in a long-term care facility and helping overburdened staffs care for them. They argue isolation, more than COVID-19, poses the gravest threat to people in long term care facilities.

Experts agree lack of close contact with loved ones makes nursing home residents vulnerable to depression, weight loss and other medical problems, and loss of will to live.

At the same time, nearly 70% of Pennsylvania’s deaths from COVID-19 involve people in long-term care facilities. Facilities all over the country locked down because of COVID-19, which is highly contagious and especially deadly for older people because of their weakened immune systems.

Diane Menio, an advocate for people in long-term care and their families, points to a recent 20% increase in deaths among people with Alzheimer’s and dementia. Experts believe it’s linked to pandemic fallouts such as isolation, stress and lapses in care resulting from overworked nursing home staffers.

“It’s going on eight months and we haven’t been able to touch or hug our loved ones,” said Shirley Shippey of Bedford County. “They are declining. The isolation is killing them as much as COVID.”

Shippey, whose 80-year-old mother lives in a nursing home, is the administrator for the Pennsylvania branch of Caregivers for Comprromise.

Caregivers for Compromise was founded by a Florida woman who took a job as a dishwasher in a facility so she could see her husband. The Pennsylvania group has grown quickly and now has over 500 members.

The long-term care industry and government don’t dispute the dangers posed by isolation.

In early September, the Pennsylvania Department of Health announced it would permit “compassionate care” visits in situations where a nursing home resident experiences a major health decline documented by medical records. One of the purposes was to allow family members to help with the care of their loved one.

However, Shippey said the visits haven’t materialized for many in her group. They describe barriers including difficulties in obtaining medical records, nursing home administrators claiming lack of knowledge of the process, and facilities saying they have to wait for their corporate owner to permit visits.

But then, on Sept. 17, the federal Centers for Medicare Services expanded the definition of compassionate care and told nursing homes they must allow visitation or face penalty.

Nursing homes must allow compassionate care visits in situations such as a normally talkative resident who has become withdrawn or begins crying frequently, a resident who needs cues from a loved one in order to eat and drink sufficiently, and a resident grieving the loss of a loved one. The policy is aimed at allowing visits by people who had formerly played a role in the care of the nursing home resident.

Zach Shamberg, CEO of the Pennsylvania Health Care Association, which represents long-term care facilities, said nursing homes regard the federal definition of compassionate care as “almost all-encompassing … It could really be applied in almost every situation.”

Nursing homes were given 30 days to comply with the Sept. 17 directive, according to the association.

In essence, CMS has told nursing homes they must “facilitate” outdoor visits in virtually all situations. Further, they must allow indoor visits unless the facility has had a COVID-19 outbreak within the past 14 days or is investigating a possible outbreak, or the rate of positive COVID-19 tests in the local county is above 5%.

Still, CMS gives nursing homes latitude to impose conditions and refuse visits. For example, the homes can require visitors to pass temperature checks, impose time limits and other controls on visits, and eject people who don’t follow infection control rules.

CMS also continues to encourage nursing homes to use “outdoor visits whenever possible.” “Facilities should create accessible and safe outdoor spaces for visitation, such as in courtyards, patios, or parking lots, including the use of tents, if available,” CMS wrote.

Members of Shippey’s group are tired of window visits which, along with video visits, have been widely used in Pennsylvania as a substitute for direct visits. They say both can do more harm than good for people with Alzheimer’s or dementia.

Collins said her mother couldn’t grasp why visitors remained outside. Her mother’s distress was unbearable to watch, putting an end to the visits. Shippey describes a similar result.

Plus, with cold weather arriving, it won’t be long before outdoor visits aren’t practical.

Shippey said as of late last week, most of the people she’s heard from have been unable to arrange an in-person visit.

Still, Menio, of the CARIE advocacy group, regards the recent CMS directive as major progress and expects people will soon be able to spend time at facilities and begin offsetting the harms of the isolation.

“I think it’s taking a while. I think the facilities are very cautious,” she said. “We’ve convinced [the government] it’s dangerous to isolate people .. it’s not perfect, but it’s certainly better than we had before.”

Pennsylvania health department spokeswoman Maggi Mumma said the CMS rules “supercede” the health department’s early compassionate care policy. She said the department is revising its own rules to align with CMS. She said nursing homes should follow the CMS rules for now.

“The Department of Health must ensure the safety and well-being of nursing home staff and residents as the first priority, especially during the COVID-19 pandemic which has disproportionately affected older populations,” Mumma wrote in an email.

She didn’t directly answer a question about when people should expect the compassionate care visits to begin.

Meanwhile, facilities remain responsible for protecting their residents from COVID-19, a threat that is considered likely to grow again during fall and winter. If the overall positivity rate of COVID-19 tests within a county is above 5%, CMS advises nursing homes to test visitors.

An ongoing shortage of rapid testing could interfere with indoor visits, Shamberg said. Beyond that, uncertain supplies of protective clothing could interfere. Plus, thinly-stretched staffs will have to schedule and supervise visits, taking time away from caring for residents.

Even as Shippey pushes for an end to her separation from her 80-year-old mother, she worries about the impact on staff.

“They don’t have time for all that. The COVID has given them so much more to do and they are short” on staff, Shippey said.

Meanwhile, Collins is acutely aware of precious days slipping away.

She points out that staff and people making deliveries enter her mother’s nursing home daily. She says she would gladly take the same precautions.

“I can do the same thing for my mom and be responsible,” she said.

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