Paul Nappi arrived at Penn Presbyterian Medical Center’s intensive care unit suffering from a severe lung problem on March 8.
The 53-year-old Chester County man, already depleted by cancer treatments and a December bout with pneumonia, was unconscious and hooked to a breathing machine. His family was told he might not make it through the night.
They also were given a small spiral notebook labeled ICU Healing Journal. The family could fill it with words that could help hospital staff understand who Nappi is. Doctors, nurses, and therapists would add entries offering support and explaining what Nappi was going through. The journal could help him adjust to life after the ICU — if he survived.
He is a “big kid” who sings — out of tune — to music from the ’70s and ’80s in the car, his daughter Allie revealed on the “get to know me” page. He has two pugs — Maya and Nutmeg — and he likes TV’s Big Bang Theory. He is religious.
Nappi did survive the night. The next morning, Megan Zielke, the unit’s critical care clinical pharmacy specialist, wrote the first staff entry, explaining that he was on medications that made him more comfortable but also paralyzed him. His family was there, she wrote. “They care so much about you!”
Nappi’s other daughter, Bella, a 20-year-old University of Delaware student, wrote the first family entry later that day. She told her father how well he was doing. She and her older sister prayed the Chaplet of the Divine Mercy at 3 p.m. as he normally does. “For the sake of His sorrowful passion, have mercy on us and on the whole world,” they recited.
“You’re our hero!” Bella wrote. “We love you forever and always.” She signed with a heart.
With those words, Bella was hooked. She talked to her father, but she wasn’t sure he could hear her. Writing felt different. “I wanted in the moment for him to hear exactly what I was thinking and I was feeling and I felt like the journal allowed me to do that,” she said.
The power of human connection
After years of planning, Penn Presbyterian began offering the journals in January to help prevent post-intensive care syndrome, or PICS, a set of physical and emotional problems gaining attention as more people survive an ICU stay but struggle afterward.
The journals have proven powerful for patients, as well as families and staff, said Mark Mikkelsen, a critical care doctor, who, along with Julie Rogan, an ICU clinical nurse specialist, helped start the project.
“The power of it is that it’s just about human connection,” Mikkelsen said.
Wes Ely, an ICU doctor with Vanderbilt University and the Nashville VA hospital, leads a Society for Critical Care initiative, the ABCDEF bundle, to improve ICU treatment and life after. The more hospitals stick to its science-based protocols, survival rates go up and ICU stays get shorter, he said. Improving communication with families is a priority, and diaries are part of that.
European hospitals have used ICU diaries or journals for years and have shown that they reduce post-traumatic stress disorder and anxiety after discharge. While Ely “totally loves” them, he estimates the number of U.S. hospitals using diaries is in the “double digits.” There is resistance, possibly because employees already feel overworked or hospital lawyers worry the entries will provide fodder for lawsuits.
Some people also wonder whether the journals might be painful for families of patients who die. Mikkelsen said the research says otherwise and, anecdotally, families appreciate the record, no matter what happens. When patients are doing poorly, the staff knows the future audience for the journal becomes the family. Rogan said staffers may then write about how comfortable the patient looks and how supportive the family has been. The journal, Mikkelsen said, “speaks to how ill that person was” and how much the family and medical team cared.
Main Line Health’s Bryn Mawr Hospital tried giving families spiral notebooks for journaling, but the program ran out of steam after a few months. The hospital plans to try again soon and hopes to spread the program to other system hospitals, said Amy Pelleg, nurse manager of Bryn Mawr’s ICU. Thomas Jefferson University Hospital encourages families to keep their own journals. Cooper University Hospital’s ICU is seeking approval for diaries and research to study their impact.
ICU patients often are heavily sedated. When they awaken, they feel shattered and weak. Many have delusions or nightmarish explanations for procedures they underwent. A catheterization may become a rape. A trip for a scan is remembered as an abduction. Odd noises and snippets of conversations turn into dreamlike stories that seem very real to the patient.
“Imagine feeling tied down. You can’t get loose. You have a tube in your mouth,” said Antoinette Spevetz, a critical care doctor at Cooper University Health Care. “That’s very terror-provoking.”
Patients lose days or weeks. Many struggle with how to fill in their history when they awaken. “It’s very traumatic to them that they can’t piece it all together,” Ely said.
The diaries, which sometimes include photos, help patients put their histories together in more accurate, less disturbing ways. They let patients see how families and staff supported them. They give families something important to do at a time when many feel helpless, Mikkelsen said. And, they improve communication between families and staff.
“It can bring out that we not only cared about your Foley [catheter] or your central line,” Ely said. “We cared about who you are. … And the person starts to feel more whole again.”
‘A lost art’
The notebook that Penn Presbyterian ICU families get includes inspirational quotes from sages like Maya Angelou and Lao Tzu. A section in the back describes machines that make weird noises, including ventilators, IV pumps, and floor cleaners. The rest is blank pages. Families are urged to record daily events, including visitors and room noises, and write encouraging messages.
Mikkelsen said he’s been surprised by how valuable it is to step back from the technology and hand-write a short message. “Your family exemplifies family support! We should all be so lucky,” he wrote in Nappi’s journal March 14. Two days later, he wrote: “It’s so great to finally meet you, as you awoke today once we were able to get the sedation decreased.”
The doctor uses computers all day but rarely puts pen to paper. “In some ways, writing has become a lost art and yet that’s partly why it’s so powerful,” Mikkelsen said.
One out of every four or five of Mikkelsen’s ICU patients dies. Sometimes he wonders: “Did I help anybody today? I actually find more often than not that [journaling] makes me at the end of the day say I did something good today.”
Alicia Ulerick, Nappi’s respiratory therapist, was struggling with the “negativity” of ICU work when she met Nappi and his family. Nappi’s progress helped her remember why she’d chosen such difficult work. Contributing to the journal helped her see how close his family is. “There just was a lot of love with that family in particular,” she said.
Bradley Cooper and video games
Nappi’s journal contains entries from his daughters, his wife, Leisa, several visitors, plus nurses, therapists, pharmacists, and doctors. The overwhelming theme is love and concern. The staff even brought sparkling cider to celebrate Paul and Leisa’s 27th anniversary. When Nappi moved to a different unit, just the family kept writing. Now he’s in rehab.
Leisa Nappi, a human resources benefits manager who keeps extensive notes about her husband’s medical experiences, rarely used the journal. There were too many distractions, she said. Her daughters, though, wrote frequently.
Allie, 24, an assistant buyer for Free People, resisted at first. “It ended up being really therapeutic for me,” she said. She found she could open up on paper, and she loved the idea that her father might eventually read her words.
“I turn to you for my strength and faith in God, and I am amazed to find that, even these past few days, I am learning from you to submit to God’s will,” she wrote on March 11. “I love you more than anything in the entire world. Thank you for giving me strength as I face my greatest fear.”
Paul Nappi, a lawyer, did not awaken from his 12-day, medically induced coma haunted by nightmares, but he did have some bizarre ideas. An avid gamer, he thought he had been in a video game seeking to pull tubes out of his mouth. He feared drowning. He believed his family had left him alone to go out with actor Bradley Cooper. Cooper is a family friend and Nappi’s visitors had been talking about his new movie (A Star Is Born), but no one had gone anywhere with him. Nappi also remembered trying to persuade Allie’s boyfriend to take the tubes out. “It’s clear as day to me that it happened, but it didn’t,” he said.
Normally, he’s unusually good at recalling what happened on specific dates, so it has been disturbing to have so much blank space on his mental calendar. Soon after he awoke, Bella read him the journal over two nights. He listened intently, soaking up all that love without tears. The journal prompted a lot of questions, and the answers have helped fill in the gaps.
He said he was depressed after his ICU stay in December, but this time feels different, partly because of the journal. “I felt good about the team and the fact that they all cared enough to write in the book,” he said.
The unspoken thread in the entries was fear that he might not make it, but that doesn’t bother him.
“It was nice to hear it,” he said of the heartfelt sentiments. “Everybody wishes they could hear all the things people would have said about them.”