It’s a quiet day at base camp when suddenly the enemy launches an attack. The main character is scrambling to respond to incoming fire, making quick decisions about how to respond to danger that is largely out of their control.
In many ways, it’s a lot like the experiences of families of patients in the intensive care unit with Covid-19, said Dr. Timothy Amass, an assistant professor of medicine at the University of Colorado School of Medicine.
These family members, too, often see an abrupt change in circumstance, have to make difficult decisions quickly and feel a loss of control, he said. And often, they come away from the experience with symptoms of anxiety, depression and PTSD, according to a new study published Monday in the journal JAMA Internal Medicine.
“When you put that in a hospital, the sudden change in health status is Mom or Dad was healthy yesterday and now they’re in the ICU on life support,” said Amass, first author of the study.
Having a loved one admitted into the ICU has always been an inherently stressful — and often traumatic — process, but the Covid-19 pandemic pushed researchers to look even more closely at the impacts, he said.
Amass and his team surveyed family members in the months after a loved one was admitted to the ICU with Covid-19 in 12 hospitals across the country. Many of the people studied were limited in visitation and contact with the patient.
The study found that of the families that responded to the survey, 201 out of 316 (about 63%) had significant symptoms of PTSD.
There is a chance that those who experienced the most emotional difficulty responded at greater rates and that the findings might overstate PTSD symptoms as a result, said Dr. Murray Stein, vice chair for clinical research in the department of psychiatry at the University of California San Diego School of Medicine. Stein was not involved in the study.
“All that said, even if the rates are only half of what this study found, they are still alarmingly high and point to the need for emotional support,” added Stein, who is also a distinguished professor of psychiatry and public health at UC San Diego.
Adding focus to the families
The health care community can take two important steps to help improve the experience of families: Pay attention to their risk factors and make a bigger effort to empower them, Amass said.
“What the literature really suggests was the more you can get someone involved at the bedside, the more empowered they feel to express their needs and the needs of their loved one,” he said.
In addition to the survey, the study also used narrative interviews to get more details on what made a difference for families.
Some were able to experience staff going the extra mile to make them feel connected and involved even when they couldn’t be there.
“What made it easier is the video visits, video calls and daily updates. I called and talked with the nurses every day, talked to the physician,” one family member said, according to the study.
But other survey participants felt the communication they got was limited and reported feeling powerless and afraid.
“They called us and said, ‘Do you want us to pull the plug?’ … I said how did it go from coming home to pulling the plug? … They say that her mouth was moving and her eyes was moving but they said she was dead … so, they went on and pulled the plug anyway,” another family member said.
Especially in the beginning of the pandemic, hospitals were overwhelmed, and staff members worked extensive hours to provide the best care they could. Amass said often it is small acts of kindness that families need to feel the sense of involvement and care for their loved one that they need — like asking for a picture hospital staff could hang to make the patient feel happier.
“Even that small act of compassion from the health care team to the family can really have a really powerful impact for those family members and their risk of developing these (PTSD) symptoms,” Amass said.
More research may be needed to know the best way health care providers can engage with families after an ICU stay, but this most recent study does suggest that more robust services are needed, Stein said.
“The scores on these surveys were so high that I would advocate for providers to actively screen these family members for depression, anxiety and PTSD clinically so they can get therapy,” Amass said.