Loneliness and fear taking big toll on locked down elderly, sick, and injured

For the old, sick, and injured who are institutionalized, the Covid-19 pandemic and the efforts to halt the spread of the disease into care facilities has created debilitating side-effects: isolation, loneliness, silence, fear, and worries of abandonment.

Facility lockdowns, combined with the relentless governmental bungling of the coronavirus response, are taking a terrible toll that may not soon be eased, the New York Times reported. Dr. Jason Karlawish, a geriatrician at the University of Pennsylvania, told the newspaper this about the situation in all too many nursing homes and other long-term care facilities:

“It’s not just Covid that’s killing residents in long-term care. It’s the isolation, the loneliness.”

As Paula Span, the newspaper’s “New Old Age” columnist, also reported:

“Studies have repeatedly shown that isolated older adults have higher rates of heart disease, stroke and dementia and increased mortality rates comparable to those linked to smoking. Moreover, Dr. Karlawish said, ‘Covid exposes a secret everyone knows’ — that such facilities are chronically understaffed, with relatives often filling the gap. ‘The family were covert caregivers,’ he said, providing not just connection and stimulation but hands-on help with dressing, walking, eating, and monitoring residents’ health. In a study Dr. Grabowski co-authored, nursing home residents with dementia received better quality care at the end of life if a family member visited regularly.”

Federal regulators in March locked down long-term care facilities to try to halt the coronavirus infections and deaths sweeping them. More than 68,000 residents and health workers at the centers have died from Covid-19 (as of Aug. 13) — 41% of all such deaths in the nation. More than 400,000 residents and their health workers have been infected with the disease.

Owners and operators have insisted they did the best they could to react in a fast-moving and unprecedented health crisis. They have decried the lack of federal and state assistance in providing more testing, personal protective equipment (PPE), and other support to isolate and treat vulnerable residents.

While nursing homes early on were a flashpoint in the pandemic, the same gaps and challenges in care (including in skimpy staffing with under paid and over worked caregivers) — and more — persist. This is fueling a new spike in deaths and infections in the facilities in hot-spot areas.

Politicians, regulators, and owners and operators don’t seem to be learning from others’ calamities, with the Wall Street Journal, for example, reporting that overseers of the facilities (inspectors at the state level) too often are going home to home in areas across the latest coronavirus hot spots without undergoing regular testing themselves to ensure they are not spreading infections. This is occurring in Pennsylvania, Ohio, and Texas, the newspaper reported. This was an issue that embarrassed Calif. Gov. Gavin Newsom in a published Los Angeles Times story a few weeks ago. He immediately ordered the inspectors be tested regularly.

As policymakers grapple with ways to end the coronavirus’ lethal spree in long-term care centers, important voices too often have gone unheard: the affected residents and their loved ones. Some families have talked to local media outlets, which have captured heart-wrenching scenes of loved ones parked outside institutions’ windows, trying to maintain a semblance of contact with the institutionalized.

Those forced into what they are telling their families amounts to “involuntary confinement,” however, have not been much quoted. They may lack the cognitive or physical capacity to be interviewed by journalists. If family members struggle with access to them, it’s even more difficult for reporters.

Still, Span captures some of the anguish of families and residents. And to be sure, institutionalizing a loved one — for incapacity related to age, illness, or injury — is often fraught. With emotion. Guilt. Anxiety. Stress. It may occur suddenly. It often marks a turning point, with families and residents alike realizing drastic changes in circumstance.

As a colleague and friend, Jeffrey Pitman, commented for my recent newsletter, a glaring issue with institutional care as currently constituted is the failure to recognize that these facilities must be places where vulnerable people go to live — not to die. Residents cannot be reduced to ticks on a equity fund’s P&L statement, though ProPublica, the Pulitzer Prize-winning investigative site, has reported on a New Jersey nursing home chain that sought out Covid-19 patients that it claimed it could care for and earn higher rates as a result — until the deaths and infections soared.

In my practice, I see not only the harms that patients suffer while seeking medical services, but also the damage that can be inflicted on them and their loved ones by abuse and neglect in nursing homes and other long-term care facilities. The relentless and ever-rising coronavirus toll in these institutions nationwide has gone far beyond the unacceptable — how would federal and state authorities react, if, for example, the population of Gaithersburg, Md., died in just a few months? Or if a deadly and debilitating disease had infected the equivalent of most of the population of Virginia Beach?

For institutionalized residents and their loved ones, it may be hard to grasp the “grave concern” but also the consoling tone of Seema Verma, the nation’s top overseer of nursing homes and other long-term care facilities. She called on the facilities to step up their infection control efforts. And as an industry-covering publication quoted her telling owners and operators in a recent conference call:

“We are here to help you and support you,” she said. “This isn’t a time of fines and being punitive, it is a time … to be problem-solvers. I want you to know that whatever you need, we are here to help you on any level — whether it’s staffing, whether it’s supplies, whether it’s testing, whether it’s just technical assistance. We’re here to get you whatever you need.”

Hmmm. Here’s what’s most in demand: We need to get better, asap, in stopping the pandemic’s savaging of the old, sick, and injured in institutions, and then the facilities’ residents and families deserve a reckoning for how and why this nightmare spread and persisted. We’ve got a lot of work to do.