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Loneliness

COVID-19: Lonely Dying and Dying Alone

Let’s not let well-intentioned policies inflict suffering and grief.

Key points

  • Loneliness at death caused by COVID-era policies remains one of the pandemic's greatest tragedies.
  • Nursing home residents report that the policies caused deterioration of their mental and physical health.
  • Future pandemic policies must balance protection of the vulnerable with the maintenance of human relationships.

Every time I give a public talk on my book The Lost Art of Dying , an audience member asks how I make sense of COVID-era policies that restrict visitors in hospitals and nursing homes. How can people die well when they are forced to die alone? How do people die well when accompanied only by a digital device or an anonymous member of the clinical staff?

My response to such questions is always the same. Of all the horrors of the COVID-19 pandemic, policy-inflicted lonely dying and dying alone will go down in history as perhaps the greatest tragedy.

When coronavirus began sweeping the United States in Spring 2020, it seemed necessary to lock down. Scientists and doctors weren’t sure how the virus spread and institutions everywhere experienced shortages of personal protective equipment (PPE). To safeguard the most vulnerable and limit spread, policies were enacted to restrict the movement of people and thus the spread of disease.

Within months we better understood the virus and amassed PPE. Some hospitals began to allow limited visitors. But most care facilities, including nursing homes and rehabilitation centers, continued to follow Medicare guidance that forbade visitors unless new COVID-19 cases were at record lows, which never happened.

Isolation Is a Detriment to Mental Health
Not only did visitor restrictions cause thousands of patients to die alone, many experienced significant loneliness, with disastrous consequences on mental and physical health.

The nonprofit research and consulting group Altarum, conducted a survey among residents of long-term care facilities during the summer of 2020. They wanted to know how coronavirus restrictions impacted residents’ lives and how they felt about it.

Across the board, loneliness had increased. More than three-quarters reported feeling lonelier. Most no longer left their rooms to socialize.

This increased isolation caused their physical health to decline. Residents made comments such as “I have increased confusion, weight loss, and sadness,” and “I have little appetite and am losing weight.”

Many residents reported that they no longer received help with basic hygiene. According to one:

I look like a caveman. No one will help shave me or cut my hair. They can’t even cut my nails or toenails. I have lost weight and I stay hungry. I miss my family. I especially miss my wife. She really took care of me. I want to go home. I hate it here. I am lonely and bored and feeling very very sad and depressed.

Isolation Also Affects Physical Health
Physical concerns linked closely to mental health concerns. Residents expressed feelings of depression and despair. Many used the word “prison” to describe their present circumstances. One person said: “I feel like I am in prison. The prospect of weeks or months more of isolation makes me feel like giving up on life. This is not living at all. Workers keep bringing the virus into the building, so tell me why my family can’t visit me in my room?” Many expressed wanting to die. They felt that if the virus didn’t kill them, the isolation would.

It is critical to remember that policymakers caused such physical and psychological harm. To be fair, the restrictions stemmed from a strong desire to protect society’s most vulnerable members. But once protective equipment was understood and broadly available, ongoing restrictions seemed nothing short of cruel.

Public health experts continue to be divided as to the future of the pandemic. Cases are surging again worldwide and climbing in the United States. The vaccines will doubtless help to mitigate deaths and hospitalizations, but the impact of viral variants remains to be seen.

Regardless of the future course of the COVID-19 pandemic, one direction is certain. We owe it to society’s most vulnerable—both the institutionalized elderly and those with disabilities—to rehumanize their living and to alleviate the loneliness of their dying.

Human beings are relational creatures. We live and die best in the context of community. Let’s not let well-intentioned policies inflict immeasurable suffering and grief.

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