On July 5, Florida Governor Ron DeSantis signed the No Patient Left Alone Act to right some of the most egregious wrongs of the COVID-19 pandemic. During the pandemic, hospitals nationwide denied patients visitation, even at the end of their lives. Nursing homes and other long-term care facilities did the same. Closing healthcare facilities to visitation from family is no longer legal in Florida.

During the announcement, DeSantis explained, “It [the law] increases patient protections and ensures Florida families have a fundamental right to visit their loved ones receiving care in Florida hospitals, hospices, and long-term care facilities.” It also prevents the facilities from requiring that family members receive a COVID-19 vaccination to access visitation and bans any policy that prevents them from having physical contact, such as hugging their loved ones. “This ensures families can be there and patients can have their support system around them when it matters most,” DeSantis added.

One woman in Florida made national news during the pandemic and met DeSantis to share her story. Mary Daniel’s husband suffered from Alzheimer’s and was in long-term care in Florida when the pandemic began. She visited her husband every day after work and spent the evening with him. On March 11, 2020, she kissed him goodnight. On March 12, the staff called her and said she could not come back. In Daniel’s own words:

I knew that the isolation was going to hurt him. With dementia patients, Alzhiemer’s patients specifically, the human contact, the hand holding, the back rubbing, me being with him was the most important part. I couldn’t talk to him on the phone. I couldn’t talk to him on FaceTime. His verbal skills are very limited. He talks but I can’t understand what he says.

So there was no conversation that we could have. He would kiss the iPad because he didn’t understand where I was and how that worked. We tried two window visits and he cried the entire time. He just truly didn’t understand why are you not in here and why are you not with me? He had no knowledge and no cognitive idea of the virus. He didn’t know what it was and didn’t understand it and so didn’t know what was going on.

She spent 114 days advocating for herself and other families and figuring out how to get back to the daily routine her husband was used to. Daniel received national media attention when she took a part-time job as a dishwasher in her husband’s facility just to check on him. She also started to connect with other families in similar situations and has a Facebook group that was 14,000 strong when she interviewed with American Thought Leaders in April of 2021.

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During the process she met with DeSantis and his wife Casey, who listened intently to her story. She participated in task forces trying to work out how to reconnect patients and families in the state. “Governor DeSantis has absolutely without question led the way in how to do this right and get us back to our loved ones. After our conversation, we walked out to a press conference, and he announced the establishment of a Long Term Care Task Force for Reopening Facilities in Florida.”

Initially, DeSantis issued executive orders to get families back in with their loved ones. Those activities resulted in the law he signed on Tuesday. Residents of other states, especially those with hard lockdowns, did not have a similar advocate in the governor’s mansion. Patty Heffernan, a resident of Michigan, lost her brother to cardiac disease during the pandemic.

Her 96-year-old mother, who is entirely cognizant and only requires assisted living, grieved the loss of her child alone. No family was allowed to visit and comfort her. The only people allowed to touch her mom was the staff. “It stays with you forever, ” Heffernan said. “We got no closure, could not gather in our grief, and only five people could attend his funeral. That just accommodated his immediate family.”

Needless to say, Governor Gretchen Whitmer did not help Heffernan or other families in a similar situation. She was too busy putting COVID-positive patients into facilities like Heffernan’s mother is in and ensuring no one could buy seeds at Walmart.

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The right to receive visitors should be in every patient’s bill of rights. Every patient deserves an advocate. And every family member needs to be able to make observations about the care their loved one is receiving and ask questions of their providers. As Daniel explained:

When I saw Steve after 114 days, there were light bulbs out in his room. His remote control was gone from his TV. When I took his shoes off to put him in bed, his toenails had not been cut in 114 days. This is a man who was meticulous about his appearance. We didn’t dry his golf shirts. We hung them.

He has every shirt he’s ever owned in that closet in there because he took care of his things and his appearance with such great care. I pulled his shoes off, and I couldn’t believe it. Now is that neglect? No, he doesn’t know, he doesn’t realize it. I know, and I see it. What do you think that looks like after 300 days?

The cruelty of making people die alone in any setting is unspeakable. We know this happened to patients who died of COVID. It also happened to countless Americans hospitalized for other illnesses and in long-term care facilities. The fact that healthcare administrators and caregivers around the country enforced policies that isolated these patients is sickening, and anyone who ever attended a death knows it.

And thanks to the work of Mary Daniel and the decisive action of Governor DeSantis, it will never happen in Florida again.

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