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For each critically ill COVID-19 patient, a family also is suffering

By Charlotte Huff, Kaiser Health News on

Published in News & Features

The weeks of fear and uncertainty that Pam and Paul Alexander suffered as their adult daughter struggled against COVID-19 etched itself into the very roots of their hair, leaving behind bald patches by the time she left the hospital in early May.

Tisha Holt had been transferred by ambulance from a smaller hospital outside Nashville, Tennessee, to Vanderbilt University Medical Center on April 14, when her breathing suddenly worsened and doctors suspected COVID-19. Within several days her diagnosis had been confirmed, her oxygen levels were dropping, and breathing had become so excruciating that it felt like her "lungs were wrapped in barbed wire," as Tisha describes it.

Vanderbilt doctors put the 42-year-old on a mechanical ventilator, and the next few weeks passed in a blur for her parents, who waited helplessly for the next update about the eldest of their three children.

"That's when it got really, really bad," Pam said. "We were not allowed to see her, to go, to talk to her — not anything. I would call. And I might get somebody, and then again I might not." Later that first week after Tisha arrived at Vanderbilt, Pam reached a nurse. "She said, 'Ms. Alexander, in all probability your daughter will die today.' Me and my husband both, we just cried and cried."

It "was probably more than likely the worst day of my life when the nurse told us that," Paul said. "She was our first baby, and the first person that I've held that was part of me."

The number of Americans hospitalized with the virus is increasing again, many with a circle of loved ones holding vigil in their minds, even if they can't sit at the bedside. A decade ago, critical care clinicians coined the term post-intensive care syndrome, or PICS. It describes the muscle weakness, cognitive changes, anxiety and other physical and mental symptoms that some ICU patients cope with after leaving the hospital. Those complications are fallout from the medications, immobility and other possible components of being critically ill. Now they worry that some family members of critically ill COVID-19 patients may develop a related syndrome, PICS-Family.

 

Studies show that about one-fourth of family members, and sometimes more, experience at least one symptom of PICS-Family, including anxiety, depression, post-traumatic stress disorder or "complicated grief" — grief that is persistent and disabling — when their loved one has been hospitalized, according to a 2012 review article published in the journal Critical Care Medicine. Dr. Daniela Lamas, a critical care physician at Boston's Brigham and Women's Hospital, believes relatives and friends of coronavirus patients may be particularly vulnerable.

Hospital rules designed to prevent the spread of the virus have robbed them of the opportunity to sit with their loved ones, watching clinicians provide medical care and gradually processing what's happening between physician updates, Lamas said. In pre-pandemic times, a nurse "would explain what they had heard (from the doctor) and help them come to terms with unacceptable realities," she said.

The Alexanders could reach a doctor or nurse on most days. But not always, said Pam, acknowledging that "they had a lot to do." Pam described trying to cope minute to minute, day to day, waiting for the next report from the hospital, wandering from room to room. "You just walk around sort of in a daze. You can't think about anything else but that."

Paul struggled with feelings of depression, often retreating to his workshop. "I wouldn't do anything but sit there and cry, wouldn't work on nothing, just sit there with my head in my hands."

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