MOUNT VERNON — COVID-19 struck Ohio swiftly in March 2020.
Gov. Mike DeWine issued a state of emergency on March 9 when three people were diagnosed with the coronavirus. By March 22, the state was in lockdown except for essential workers.
Many nursing homes and hospitals saw heightened complications with COVID-19. Studies report this happened for a variety of reasons:
- Higher rates of comorbidities like cardiovascular issues
- The number of beds
- Increased foot traffic
- Some patients lacked understanding of how to correctly socially distance
Nursing homes and care facilities took steps to keep residents safe, but the isolation had damaging effects, too. A study in European Geriatric Medicine found that “Prolonged isolation predisposed residents to further physical and mental deconditioning.”
The result, according to Ohio Rep. Melanie Miller of Ashland County, was that many people dealt with the tragedy of family members dying alone. It happened in nursing homes, hospitals, and more.
“Those people were left to die alone,” Ohio Rep. Beth Lear, who represents the western half of Knox County, told Knox Pages. “They suffered alone. In some cases, they managed to make it through, but still, they couldn’t have somebody there to hold their hand.”
Lear and Miller want to make sure that doesn’t happen again. That’s why they introduced the “Never Alone Act” in the Ohio House.
What’s in the act?
The act requires a residential healthcare facility to:
• Notify the resident/patient that they have the right to designate an advocate.
• Provide the resident/patient the opportunity to make such a designation.
Miller said she decided to do something after hearing from a slew of Ohioans who wanted something done to address the struggles they faced.
“This legislation is definitely patient-driven,” she told Ashland Source.
Miller said she experienced those challenges first-hand as the director of Ashland’s pregnancy care center. Miller helped women whose spouses couldn’t be in the room during appointments or while delivering their children.
For her, the stories that stuck the most were those of family members whose loved ones died on ventilators, alone.
“Those stories are so numerous, and they’re still very fresh,” Miller said.
Lear shares similar stories.
“I know there were hundreds if not thousands of people who lost loved ones, and they didn’t get to say goodbye,” she said. “Our concern is that’s going to be allowed to happen again if we don’t provide some sort of requirement to allow someone in.”
Lear said the advocate would follow the same rules as the nursing staff.
“If there’s another COVID and the folks who are working in the nursing home or the hospital mask up, or even have to wear suits, the advocate would also have to do that,” she explained.
Additionally, if the advocate causes problems for the staff or patient or is abusive or violent, the patient can replace them and designate someone else.
“We also already have law protections to make sure that abusers are not able to be advocates,” Lear said.
‘Utterly helpless’
Studies show that social isolation can make health problems worse. Virginia Williams watched that happen to her mother.
Williams’ mother was admitted to a Knox County nursing facility after she fell and broke her hip. In January 2019, her dementia was fairly light.
“She would kind of forget something, but it was something that a lot of us might forget: maybe the day, or somebody’s name that she’s known for a long time,” Williams explained. “Then COVID came and all of a sudden the doors were shut for visitation.”
Williams recalls family members standing outside her mom’s window outside the facility.
“We could only speak to her through the window, and she had to be masked. She really couldn’t see us, and she couldn’t really hear us, so it was really sad.
“It was very frustrating.”
“Residents and patients need to be able to have an advocate who can come sit with them no matter what is going on in the world.”
Ohio Rep. Beth Lear, 61st District
Williams believes her mother’s dementia progressed because of the isolation.
“She wasn’t stimulated,” she told Knox Pages. “She was just lying there. She was bedridden and couldn’t get up and walk around.
“She kept saying nobody’s coming to see me and nobody’s calling,” Williams continued. “I said, ‘Mom, we’ve been there.’ But I think with no contact — you’re not supposed to be touching — and you’re sitting far away and unable to see our faces, she couldn’t hear.
“I think she thought we abandoned her, and there was nothing I could do about it. I felt helpless, utterly helpless.”
Williams said she supports a bill like the “Never Alone Act.”
“I feel like I should’ve stood up for her more, but I couldn’t fight the nursing home. I couldn’t fight the rules,” she said.
“Where did Mom’s rights come in? Where did her family’s rights come in?”
Who’s supporting it?
In Ashland County, the nonprofit Council on Aging provides services and advocacy for seniors over 60. Executive Director Sandy Enderby said she fully supports the bill.
“We need to be with our loved ones on their dark days,” she told Ashland Source.
Enderby said that as director, she heard numerous stories about people who couldn’t hug and hold their family members as they passed.
It became personal, too.
Enderby’s mother was in assisted living with dementia during the pandemic. Without her family around, Enderby said her mom went from functioning well to being homebound.
She said healthcare workers did their jobs during that time, but it was hard for everybody. She views the bill as alleviating some of the stresses and difficult decisions that had to be made during that time.
“Ashland is somewhere special,” Enderby said. “We look after our community. It’s multi-generational, from the oldest to the youngest.”
Seventeen other representatives have signed onto the bill. That includes Rep. Darrell Kick (68th District), who represents the eastern half of Knox County.
John Palmer, director of media and public relations for the Ohio Hospital Association, said his group has been working with Lear and Miller.
“We have had conversations with them about what they are hoping to accomplish with this bill,” he told Knox Pages.
“We definitely know the impact that has … With this particular legislation, we have been having conversations with the bill sponsors about how to do that.
“But we need to make sure we’re putting safety first, and make sure this legislation ultimately gets to the point where it protects patients, visitors, and staff.”
What more needs to be done before it’s passed?
Lear and Miller introduced HB 236 in July. It is currently in the Health House Provider Services Committee.
The bill started at one and a half pages in February and has grown to nine in its current iteration. Miller said that’s a nod to considering more consequences and stakeholders’ viewpoints.
Lear said she and Miller met with hospitals and other organizations that have congregate care to ensure they have a seat at the table.
“We want to make sure of the rights of patients and residents, but we also want to make sure that we’re not making it impossible for organizations to do their job,” she said. “We hope that it will be voted out of committee before we leave for Christmas break.”
Miller said that once members vote the bill out of committee, it will be seen on the House floor. She encouraged people who have stories to share about this topic to reach out to her or Lear for help developing testimony on it.
You can reach Lear at 614-466-1431 or email rep61@ohiohouse.gov. Contact Miller at 614-466-0961 or rep67@ohiohouse.gov.
Miller added that once the bill hits the House, people can also come and watch the process in person.
“I did that many times before becoming a legislator, and it was really rewarding to be there the day [a bill] passed,” she said.
What are other states doing?
The Never Alone Project aims to raise awareness of the struggles stemming from isolation in the healthcare setting. Twelve other states have passed similar legislation since the COVID-19 pandemic.
The legislation ranges from a daily two-hour visit provision to one visit every five days. In Arizona, a doctor can override a patient’s right to a visitor. In Missouri, visitation is as-needed by the patient.
The project lists Missouri’s law as one of the best in the nation, and it received bipartisan support in its final votes in the state Senate.
Still, some reports say the legislation hasn’t had many effects.
St. Louis Public Radio found that the bill’s sponsors hadn’t heard from constituents or healthcare facilities a year after it passed. It noted that results might not be seen until hospitals face another public health crisis.