Fighting for the voiceless: The Death of Franca Panettone

The story below is very hard to get through. It was related to our colleague Megan Mansell last year by the family of Franca Panettone. I recounted this terrible incident briefly with Mike Rowe on his podcast. Frankly, I got a bit emotional:

The story below is why we still fight and why we need YOU in the fight. This is why I wrote GoneViralBook.com

Fighting for the voiceless: Franca Panettone’s family hopes her tragic COVID death will bring changes

BY MEGAN MANSELL
(originally posted here)

Franca Panettone was born on November 3, 1973, and died on April 6, 2020

For Franca Panettone, the quick path to a tragic demise began March 28, 2020, with a fever and cough. Franca was a vibrant, spirited, 46-year-old woman who had a passion for going to church and singing, was close-knit with her family, and was largely nonverbal with Down Syndrome. She also loved the color purple. Franca’s sister Maria, who served as her healthcare surrogate, was with her during the fateful emergency room visit, as Franca was unable to advocate for herself or understand medical terminology.

The first doctor they saw told Maria she would be able to stay alongside Franca, but once Franca was admitted and transferred to a different part of the hospital, a temperamental charge nurse told Maria she was not allowed to be there, going so far as walking her to car. Maria was denied entrance in spite of identifying herself as Franca’s healthcare surrogate and was told that her presence as Franca’s advocate was against hospital policy. She said it was as if her sister had been taken – but what came next was both unexpected, inhumane, and  a disgusting abuse of power that resulted in a heinous act against a defenseless woman that can never be undone.
 
Franca’s tale is worthy of being told, and laws should be enacted in its wake to shield other families from similar disgraceful paths of grief and suffering.
 
Franca did not know the masked strangers or understand how to make medical decisions for herself. She became frustrated and was restrained. At the same time, her family was not told of the progress of her ailing health, and they were denied hospital access and left defenseless as Franca writhed in bed restraints without access to disability rights medical advocacy or her family, who had legal authority over her well-being. She became a prisoner who had committed no crime, a captured woman.
 
Franca’s treatment and her family’s lack of access were horribly surprising for everyone, as they had no warning of this possibility but did not want to deny Franca her necessary care.  

The family received a mere 5 phone calls from doctors during the duration of Franca’s stay. A lot of questions were left unanswered throughout the ordeal, and they requested HCQ to be administered but were denied. They were told she was getting fluids and that her fever wasn’t breaking. Franca was given the phone once over the first two days. She was tired, was on a lot of medication, and spoke very little in general, so it was a brief call. Franca’s family wondered whether the hospital used a similarly inadequate form of communication with their deaf patients.

The family was told she was being treated for sepsis, but Franca spoke in short sentences with limited vocabulary and was incapable of understanding what this meant or which treatment options were available. Communication was choppy and lacking. It took two days before an infectious disease doctor contacted the family, during which time Franca had no contact with the outside world.  

Franca’s family is haunted by the knowledge that she was strapped to a bed for 10 days in the custody of total strangers who were touching her, changing her, and feeding her, while she was utterly helpless and unable to understand what was happening.

Family members from all over the country were trying to reach the hospital to contact her or get updates, with no success. The doctor who finally touched base said she had a bad case of pneumonia. A COVID test was done on March 29, with test results received April 1, but the family was not notified of the COVID positive test until April 2. Throughout, Franca was denied HCQ, family access, and representation as she lay dying, alone and scared, in a strange place surrounded by strangers. 

Between April 2 and April 6 (the date of Franca’s death), the family received little communication back from the hospital, and although they requested a patient advocate from the hospital, one was not provided. Franca reportedly became jumpy and anxious, behavior that was unusual before her hospitalization. She was in a room completely by herself. The family was not told she was restrained; they only learned that after her death, when they reviewed her medical chart. The family was not told she had been put on a ventilator until 7 hours after the fact, and they were not told she had been put on life support, nor did they consent, as they wanted a DNR (a Do Not Resuscitate order).

Her family was told on the day of her death that they could be physically present with her as she died if they would sign the DNR, so they verbally agreed, but they were still not allowed to be with her, although the hospital’s website said that exceptions to their no-visitor policy could be made for end-of-life situations. They watched her die via FaceTime on an iPad that was brought out to the parking lot by a nurse.

Although Franca’s official time of death was 1:56 a.m., the medical chart notations showed that her vital signs were taken hours after her death, at 3:54 a.m. and 3:55 a.m.. The next time Franca’s family saw their beautiful ray of sunshine, she lay in repose, the spark having escaped the woman they loved, a woman whose life was important. Everyone in this country should know the name Franca Panettone. Would Franca have had a different outcome if she’d had advocacy, a competent voice, and access to medical clarity and open communication?

How many hospital patients have died like Franca? How many died like Franca today? Will we ever know?

Megan Mansell is a former district education director over special populations integration, serving students who are profoundly disabled, immunocompromised, undocumented, autistic, and behaviorally challenged; she also has a background in hazardous environs PPE applications. She is experienced in writing and monitoring protocol implementation for immunocompromised public sector access under full ADA/OSHA/IDEA compliance. She can be reached at MeganKristenMansell@Gmail.com.