“Dear diary: The situation is still serious, but there’s hope … ”
“Mr. Plevritis is in the Cardiovascular Intensive Care Unit now?” a surprised Olivia Frank asks. “This must have been super-recent.”
The secretary at the front desk nods. So Ms. Frank, a JGH student volunteer, leaves the sixth floor of Pavilion K, where patients’ rooms are located. Using her fist, she presses the button for an elevator to the second floor.
“I’m looking for Mr. Panagiotis Plevritis,” she says, smiling slightly, as she approaches the secretary of Cardiovascular Intensive Care.
The staffer scans a printed document with her index finger and then nods. “Yes,” she confirms, “room 73. Are you a family member?”
“I’m a volunteer from the Medical Surgical Intensive Care Unit,” Ms. Frank replies. “I’ve been documenting Mr. Plevritis’ story.”
Ms. Frank makes her way down the hall. But as she reaches the doorway to room 73, she pauses.
Things have taken an unexpected turn. Mr. Plevritis, intubated, is sitting up in his hospital bed. His son, Jimmy Plevritis, is seated at a desk in the corner of the room, his head down, an arm covering his face.
“Oh, I don’t want to bother them,” Ms. Frank says, holding her chin with her hand. “But I need to find out what happened.”
In tracking Panagiotis’ progress and recording the evolving nature of his care for a viral infection since October 24, Ms. Frank’s role seems anything but traditional. Some might see her as a sort of journalist. To others, she’s one of many blue-jacketed volunteers.
However, to staff in Medical Surgical Intensive Care (MSICU), she’s actually more like a support system, providing patients and families with an opportunity to document their experiences in Intensive Care.
Since September, the McGill University psychology student has been leading the ICU Diaries project. During her two weekly shifts in the MSICU, she speaks to participating patients (if they are able to respond) and their family members, and then uses a digital journal to record their observations, emotions or thoughts of the day.
Discharged patients and their loved ones can access the diary virtually, but they can also request a printed copy.
“She offers additional support in a high-intensity environment,” says Pina D’Orve, a Social Worker in the MSICU. “Patients and families want to tell her their story. Whether it’s happy, sad, or they’re reminiscing, it gives them an emotional outlet.”
“For months, he wasn’t making any progress,” says Ms. Frank. “They were considering slowly withdrawing care. Then, all of a sudden, there were small changes. Jimmy would tell me his dad was eating, talking or that he opened his eyes. To able to look back on the diary and how far his father has come is truly inspiring.”
The information that’s gathered—in the form of text, videos or photos—is stored digitally on a tablet, using an app called Penzu. Any patient or relative can ask for a diary to be started, but Ms. D’Orve guides Ms. Frank in determining who would be a good candidate. Typically, it’s a patient who is expected to have a longer stay in the MSICU, since this lends itself to the development of a more comprehensive diary.
“The ICU diaries provide a beautiful opportunity for family members or even patients to grasp how far they have come,” explains Ms. D’Orve. “I think what’s really been beneficial is for family members to review the diary and see where they were when they first started, and where they are today.”
“When you’ve been in the ICU for so long, you forget the small moments that are positive, and you tend to focus on the overwhelming negativity of the situation,” Ms. Frank adds. “But when you look back on the entries, they paint a picture of resilience and strength.”
The initiative is an offshoot of the ICU Bridge Program, which enables university students to volunteer by shadowing staff in the Intensive Care Units. The overall objective is to help alleviate the stress that family and friends experience when visiting a loved one in who is in critical condition.
Jimmy, whose father was later moved back to K6, was the one who opted to start an ICU diary, because he thought the concept sounded interesting and could yield emotional benefits.
“The staff and volunteers made a very difficult time easier, which is all that you can hope for,” he says.“We got the medical care and the emotional care we needed, and for that, we’re grateful.”
“It’s great that I can help acknowledge the families’ involvement,” says Ms. Frank. “Even though they’re not the ones in the hospital, they may be suffering or having a hard time. The diaries give them a chance to express themselves, without taking the focus away from the patient.”
“It’s a long book, and every day is a new chapter,” Jimmy adds.
Although Panagiotis is no longer in the MSICU, Ms. Frank remains in close contact with Jimmy and still writes entries in his diary.
“Sometimes family members underestimate their value or think they didn’t do enough, especially if the patient passes away,” explains Ms. D’Orve. “But I think when they read the diary afterwards, it can confirm the value of their presence and the difference that they made throughout the patient’s journey.”
“Jimmy’s case is a perfect example of the power of love,” adds Ms. Frank. “He was here every day for five solid months, and I think that made a huge impact.”
The hope for MSICU staff is to have other student volunteers take part in the ICU Diaries Project during part of their shift on the unit. While the MSICU environment can be tough emotionally, Ms. Frank continues because she feels she’s making a difference.
“I’ve made some really great connections with the staff and the family members who have been here for such a long time,” she says. “The fact that I can bring something positive to such a difficult environment is something I find really powerful.”