In normal times, when a family member falls ill and becomes hospitalized in intensive care, we are able to be by their bedside, sharing critical and sometimes just simple and interesting facts about our loved ones with the medical teams responsible for caring for them. This vital information has proven to be important in connecting medical teams with their patients on a human level and often leads to better care.
But COVID-19 has stripped us of this privilege, leaving hospitals to make the difficult decision to limit patient visitation to keep everyone safe. While necessary, these limitations leave many clinicians not knowing who their patient is — what she likes to read, what she watches on television, what her favorite music is, what makes her smile. The lack of this simple information has made many clinicians feel disconnected from their patients.
During an interview with critical care medicine physician Brian Garibaldi, where he expressed how much he missed knowing something about his patients, Elizabeth Tracey, a chaplain and broadcast medical journalist at The Johns Hopkins Hospital, decided to try to change this. To address the issue, she expanded My Life, My Story, a volunteer initiative sidelined as a result of COVID-19, into audio recording of family members talking about their loved one. Family members of patients in the medical intensive care unit (MICU) are able to record messages and send photos for their loved ones and the care team while their loved one is intubated and often sedated. In addition to information for the medical team about who the patient is as a person, Tracey also asks the family members, “If you were talking to your loved one, what would you say?” This recording can be played for the patient as they are coming out of sedation or nearing end of life.
Garibaldi, director of the Johns Hopkins biocontainment unit and associate professor of medicine, says, “Elizabeth’s efforts to make sure that our patients’ stories are heard have been so helpful in the COVID-19 era where family visitation is limited. Learning something special about our patients as told by one of their loved ones has enabled us to focus on the meaning of why we are doing what we are doing in the ICU when patients are critically ill.”
Dale Needham, medical director of the Critical Care Physical Medicine and Rehabilitation Program at Johns Hopkins, says the ICU medical team has greatly benefitted from this. “We often listen, as a group, after rounds are done. These recordings help humanize the COVID-19 clinical experience, especially in the circumstance of very sick patients who may be deeply sedated without family at the bedside. We take some of the new knowledge of patients, from these recordings, and write it on the glass door of the patient room, as a constant reminder of the person we are caring for.”
Laura G. was able to use My Life, My Story while her husband was in the MICU with COVID-19. She recorded messages for him and shared photos with the staff, who placed them in his room. “Being able to send these messages and photos to Elizabeth gave me a sense of comfort,” she says. When her husband woke up, he started referring to the photos he saw.
Tracey says she hopes other medical centers across the U.S. adopt this model of caring for patients, noting that high quality audio recordings can be made quickly and easily using a cellphone app. Expansion of this program is planned for The Johns Hopkins Hospital and Johns Hopkins Bayview Medical Center.
Elizabeth Tracey, Brian Garibaldi, Dale Needham and Laura G. are available for interviews.
For information from Johns Hopkins Medicine about the coronavirus pandemic, visit hopkinsmedicine.org/coronavirus. For information on the coronavirus from throughout the Johns Hopkins enterprise, including the Johns Hopkins Bloomberg School of Public Health and The Johns Hopkins University, visit coronavirus.jhu.edu
