It’s the cruelest form of social distancing.
We’ve all seen the images, and far too many have lived the story: a gravely ill COVID-19 patient on their own in a hospital bed, hooked up to a ventilator, loved ones under order to stay away. Medical personnel wearing gear reminiscent of scenes from the “ET” movie. Family members saying good-bye on an iPad.
We get it. The isolation is necessary to protect the person and their family. Still, it contradicts our most deeply held value: being there for the ones we love.
It also contradicts basic rules of recovery and grieving. Medical professionals know the critical role family members play in helping the patient heal, alerting staff to any changes in their condition or easing their passing when all else fails.
We have no power to change this phenomenon during the current COVID-19 outbreak. But dying alone is not unique to a pandemic. In ordinary times, millions of people, including children, spend long hours in the hospital without a loved one present.
In these cases, the orders come not from medical personnel but from a boss: “If you take leave to be with this family member, you will lose your pay.”
For many, the order goes further: “If you leave, don’t come back. You will lose your job and your health insurance.”
This distancing is just as cruel—and something we do have the power to change.
Christine Lavault in Fairlawn, Mass., told state legislators what it was like when her husband was battling lung cancer. She would rush to the hospital every morning, kiss him hello and good-bye, then leave for work—not knowing whether he’d still be alive when she came back at the end of the day.
“[My employer] wouldn’t give me time off,” she said. “I could have stayed at his side, giving him comfort and advocating for what he needed. Maybe I could have searched out more help for him. I will always regret not being there for him in his last days.”
Kris Garcia’s father suffered congestive heart failure in Texas and needed emergency surgery. At the time, Kris worked at an auto parts store in Denver. All he could get was four unpaid days to be with his dad; that included a 12-hour bus ride each way. When he came back, Kris had to make decisions about life support while handling a customer’s questions about an alternator.
“It took me ten years to go back and see my father’s grave. Someone had to tell me where the grave was located,” Kris said. “The regret and sorrow will never go away.”
As palliative care physicians remind us, being present at the end of life is important for the family as well as for the patient. My mother was in a nursing home when her condition took a sudden turn for the worse. I lived out of town, but the call came in time for me to get on a plane and to her side. When I arrived, I scooted my chair as close as I could get to her and grasped her hand.
“I’m here, Mom,” I said.
Her eyes stayed shut but she squeezed my fingers. As each member of the family arrived, they repeated this ritual. My mother lost the strength to squeeze our hands, but we all took comfort from the signal that she knew we were there.
We may not be able to alter the pandemic’s digital goodbyes. But we can work together to pass affordable paid leave for all, so that we can be there for those we love in the best of times and the worst.