LULU GARCIA-NAVARRO, HOST:
Hospitals have banned visitors. It makes sense to try to stop the spread of COVID-19. But sometimes an elderly or disabled patient can't speak. They rely on family or a caregiver to talk to doctors. Now they're in the hospital alone. That sparked a series of complaints, and the federal government is being asked to tell states and hospitals to modify their bans on visitors. NPR's Joseph Shapiro reports.
JOSEPH SHAPIRO, BYLINE: On April 19, the 73-year-old woman went to the hospital with kidney problems. And right away, she was diagnosed with COVID-19. Years before, she'd had a brain aneurysm and strokes. She'd lost her short-term memory. Now she gets confused. She can't speak - not to doctors, not to nurses. At the hospital, her condition started spiraling down.
UNIDENTIFIED PERSON: It's horrible. It's a living nightmare. And to know that your mom knows what's going on but can't communicate it and probably feels that we left her there is beyond devastating.
SHAPIRO: That's her daughter. The last time the mother went to the hospital - last summer - her husband or one of her three daughters stayed with her around the clock. This time, no one was allowed.
UNIDENTIFIED PERSON: People don't typically try to communicate with her because she's nonverbal. So they don't look at her and explain to her what's going on, where we've always been able to say, Mommy, this test is going to be very uncomfortable. And we've learned techniques to help her relax during certain tests because they are very painful, and she's never had to be sedated or tied down.
SHAPIRO: Now she is tied down and sedated on a ventilator in the ICU. We agreed not to name the family because, without using their name, they've joined in a complaint against the state of Connecticut, which set that visitor ban. A spokesman for the Connecticut Department of Public Health said he couldn't comment because it's a pending legal matter.
The complaint was filed with the Office for Civil Rights at the U.S. Department of Health and Human Services. That office has investigated states for policies that discriminate against the elderly and disabled. The families in the complaint say that when caregivers are banned, many elderly and disabled people can't make informed medical decisions, that they don't get the correct care, that there's long-lasting harm.
Around the country, hospital policies vary. Many ban all visitors, or they're told to do so by state officials. Some states and some hospitals do make exceptions for some patients who can't speak. The daughter in Connecticut says that in the 11 years since her mother's brain injury, the family has learned how to communicate with the woman who no longer uses words.
UNIDENTIFIED PERSON: Because she can't explain to the doctors, where we would know, OK, this is a sign she's trying to communicate fear.
SHAPIRO: There have been some nurses who, at the busy hospital, have taken the time to hold up an iPad so the family can talk to their mother. But it's just not the same as being there. The daughter says there have been missed X-rays, missed tests and extra pain. It's not just families of people who can't speak who have filed complaints.
CHRISTINE GETMAN: Yes, full-time assistance. I always have somebody with me 24/7.
SHAPIRO: Christine Getman needs that assistance because she has a progressive neuromuscular disease, and she can't move, except for two fingers. She uses a power wheelchair. On the back, there's a ventilator with a tube that goes to her throat to help her breathe and speak. A personal care attendant 24 hours a day helps her eat, get dressed, talk on the phone, like we did, or just move. With that help, Getman gets around. She even runs a small nonprofit group.
When she went to the hospital in Oregon last month, her attendant wasn't allowed in. Getman says it would've been better for her and the hospital staff if her attendant had been allowed to help.
GETMAN: Anytime somebody entered my room to help me use the bathroom, eat or reposition, that was another round of changing gloves and masks, using sanitizer and gowns. My care attendant would have stayed in my room. They wouldn't use up any additional PPE.
SHAPIRO: This month, a coalition of disability groups in Oregon filed another complaint with the federal government, and it included a demand that people like Getman be allowed to bring a support person with them to the hospital.
Joseph Shapiro, NPR News.
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