Opinion: ‘This Is My Story’: connecting clinicians with hospitalized patients who can’t speak for themselves

During the maelstrom of Covid-19 in April 2020, I assisted in a birth at Johns Hopkins Hospital, where I work. It was for an idea, not a baby, but I hope it will grow, and develop, and flourish as an infant does.

On that day I was interviewing Brian Garibaldi, a critical care physician in the hospital’s medical intensive care unit (MICU), as part of my work as a member of the hospital’s communications staff.

As he told me about his point-of-care ultrasound study to assess lung and heart abnormalities associated with Covid-19, the conversation migrated to his experience of caring for these patients.

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“All of my patients are intubated, sedated, and often prone, and there’s no family telling me their story. I have no idea who they are,” he said.

As a hospital chaplain, as well as a member of the communications staff, I was touched, saddened, and inspired by that story. I told him I could reach out to the designated contact person listed in patients’ medical charts and find out a bit about them.

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That led to the birth of This Is My Story, which we call TIMS. These short audio files feature loved ones talking about patients who can’t tell their own stories.

With the help of administrators and charge nurses on the unit, I identified patients who were candidates for a This is My Story file as those who can’t speak for themselves and who had a predicted length of stay in the hospital greater than three days. I got in touch with the contact person, explained the project, recorded 10 to 20 minutes of the person talking about the patient, and then edited down the conversation to two minutes or less.

I then shared these audio files with the medical team.

The response has been motivating and validating for me and the MICU staff.

Alexandra Galindo, a MICU nurse, told me that when nurses in the unit listen to TIMS files, “their faces soften. Sometimes listening to a file brings a tear to someone’s eyes, because they’re so raw and human. I think people really respond to knowing that this person I’m caring for is a person. They have loved ones, just like I do.”

Third-year pulmonary and critical care resident Robbie Flick described his reaction to TIMS files like this: “I don’t think you could find a physician who doesn’t like hearing this kind of detail, at least in internal medicine. It’s hard to get this kind of detail because when you call families they’re hungry for updates and you only have so much time. It’s rare for my discussions with families to lead naturally to these kinds of stories.”

As the pandemic ground on, I continued to make TIMS files for patients who were intubated or could not effectively communicate. Under the auspices of the spiritual care and chaplaincy program and aided by chaplains, volunteers, medical student editors, and administrators, the project was expanded throughout the Johns Hopkins Hospital and the Johns Hopkins Bayview Medical Center in the late summer of 2020.

When I look at my colleagues in the MICU, I see weariness and worry about burnout.

Even before the pandemic, burnout among doctors, nurses, and other clinicians was rampant. The emergence of Covid-19 made it worse, and now the spread of the highly infectious Delta variant — and likely others to come — makes me wonder about the resilience of our medical teams. So many aspects of caring for people with Covid-19 can be demoralizing, especially within the social context of Covid deniers and conspiracy theorists, not to mention the high death rate among MICU patients. Can connecting clinicians with their patients who can’t talk via This Is My Story files help?

One of the many challenges of working in a MICU is knowing what patients want from their care, which can make for difficult and stressful discussions for patients, family members, and clinicians. Michael Velaetis, a physician assistant in the MICU, recalled a situation in which he couldn’t communicate directly with a patient who then took a turn for the worse. “I had to have difficult conversations with not just the patient’s wife but his extended family, whom I had never met, met over the phone. What I did to prepare for those conversations was listen to the TIMS file, get an idea of what the patient liked to do at a baseline, and then be able to talk about that baseline in terms of what his goals would be in the situation, and the family went right off that, and you know basically said, no, he would not be able to do those things again, and we were better able to shape his care.”

Planning for death, and coping with it, is also important. As Charles Wiener, an attending physician in the MICU and president of Johns Hopkins Medicine International, tells his teams, “We become choreographers of graceful exits. That choreography is really important, and figuring out who people are and what’s important to them and their families is important to construct a nice choreography.”

Galindo summed up the value of TIMS files by saying, “I think they make my care better, more compassionate, more patient, more holistic.”

A grant from the Conley Foundation is making it possible to study, with the help of Charles Cummings, professor of otolaryngology/head and neck surgery at Hopkins, the impact of This Is My Story on medical teams in the MICU.

Some years ago, during my final unit of clinical pastoral education at Johns Hopkins, I was paged to the surgical intensive care unit, where a young nurse asked me to pray for a dying patient whose family had just left. When I asked her who would be with the patient at the time of death, she burst into tears and said she would. That prompted me to start the hospital’s No One Dies Alone program, so nurses — since they are the ones who generally bear witness to people dying without loved ones present — would not have to do it alone.

Today in the MICU, watching the everyday heroism of the medical staff, I hope and pray that TIMS files will help support them.

Elizabeth Tracey is a chaplain for special ministries at the Johns Hopkins Hospital in Baltimore, a broadcast medical journalist, and director of Johns Hopkins Health NewsFeed. Resources for starting a TIMS program are available here.

Source: STAT