'Never Alone Act' seeks to ensure patients have in-person advocates

Brett Peveto

By Lauren Cohen / Broadcast version by Farah Siddiqi reporting for the Kent State NewsLab-Ohio News Connection Collaboration.

When Derek Calkins woke up in the hospital in January 2021, he couldn’t see or move.

He didn’t have his glasses and his legs and arms weren’t working, he recounted. With tubes coming out of his body and a ventilator in his neck, he couldn’t talk, and he couldn’t discern what was real and what wasn’t.

“I was scared,” Calkins said. “I didn’t know what was going on. No one was coming in.”

He later learned that after a successful planned surgery on Dec. 1, 2020, he aspirated fluid into his lungs and had to have an emergency surgery. Although it was successful, Calkins’ oxygen levels were still low. Then he tested positive for COVID-19 and was moved to the intensive care unit at another hospital.

As it was the height of the COVID-19 pandemic, that hospital had implemented a no-visitor policy. Calkins said he was incredibly disoriented, going in and out of consciousness due to pain medications, and craving human contact — but couldn’t have someone there in person to advocate for him.

Legislation that took effect last month would prevent others from experiencing what Calkins did, proponents say.

“Never Alone Act” prohibits denial of a patient advocate during public health emergencies

The “Never Alone Act,” or H.B. 236, was introduced by Ohio State Reps. Melanie Miller (R-City of Ashland) and Beth Lear (R-Galena) and signed into law by Gov. Mike DeWine in December. It went into effect March 20.

The bill passed in the Ohio House of Representatives with a unanimous vote of 89-0. It “prohibits a congregate care setting from denying a patient or resident access to an advocate during public health emergencies.” 

Miller said in a press release that her awareness of the need for patient rights protection inspired her to sponsor the bill. Neither sponsor returned requests for comment.

Susan Wallace, president of the nonprofit trade group LeadingAge Ohio, which represents roughly 375 aging service operators in Ohio, said her organization created the first draft of the protocol when they brought families back together in visitation during the pandemic.

“There was a concern from a number of groups, including the sponsor lawmakers,” Wallace said. “They wanted to make sure that never happens again, that kind of separation. So, they drafted this bill.”

Preventing isolation

The Ohio Laws & Administrative Rules Legislative Service Commission has a bill of rights for nursing home and residential care facility residents. It includes the right to private visits at any reasonable hour and unrestricted communications with a resident’s family.

Wallace said the new law will add an extra layer of protection for patient rights, though it won’t have a day-to-day impact because emergency pandemic orders are not in effect anymore.

“Having connections to loved ones is always important,” she said. “Our nursing facilities are not cut off from the world, they're nested within the communities, and they are extensions of the family, and so anything that we can do to preserve those connections is really important.”

Physical and mental consequences of isolation

Calkins said the isolation he experienced in the ICU took a major toll on him.

Eventually, he said his wife was allowed one-hour visits, and when he was transferred to a long-term care facility in early February, she was able to come once per week.

“I had a little clock by the TV,” Calkins said. “I would seriously stare at the clock waiting for that one hour she could come in. It was bad.”

After being moved to a rehab unit, his wife could visit daily.

“One day, she took my kids in front of the hospital, and I could see them through the window,” he said. “Both my girls were crying because they couldn’t visit me, but at least they saw me.”

Mary Malek, a Twinsburg-based clinical psychologist who specializes in medical trauma, said visitation restrictions took a toll on healthcare workers as well as patients.

“The collateral damage of this… no one is unaffected,” Malek said. “You’re trained to save lives. You’re trained to go in to be able to do your job … and it came at a high cost.”

She said she had experience with emergency medical technicians, first responders and physicians who lost their jobs or were threatened with their medical licenses for going against the mandate. In the future, she said she hopes people will be better protected.

In addition to his social isolation, Calkins said because he wasn’t shifted in his bed as often as he needed to be, he developed multiple bed sores. His legs and arms wouldn’t work properly since they were left in one position for so long.

He believes if his wife had been allowed to be there, she would have advocated for him to be taken care of properly. He said H.B. 236 gives him hope that nobody else will have to go through what he went through.

“Having someone there and being able to talk to them and being able to describe to you what’s going on, that helps tremendously,” he said. “You’re no longer alone.”


This collaboration is produced in association with Media in the Public Interest and funded in part by the George Gund Foundation.