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Getting to know the critically ill patients they’re taking care of is hard enough for ICU doctors under normal circumstances. But it’s even worse during COVID-19.
Not only are there no visiting family members to give you information, “but the patients are all similar in terms of their medical issues, they’re all on a breathing machine, and many are lying on their bellies,” explained Brian Garibaldi, MD, associate professor of medicine and anesthesiology at Johns Hopkins Medicine and director of the isolation unit at Johns Hopkins Hospital in Baltimore, in a phone interview. “You might go for days without examining the front side of their body, so we’re not seeing their face. That makes establishing connections with patients a little more difficult.”
An Idea From the Chaplain
One day Garibaldi was talking to Elizabeth Tracey, a chaplain at the hospital who also is director of audio production at Johns Hopkins Medicine — someone very familiar with audio recordings. She had an idea: how about if she interviewed patients’ family members and made a recording of what they say? “I could edit it down to a few things families really want their doctors to know about their loved one,” she said. Garibaldi was immediately on board.
In a separate interview, Tracey — who also edits and appears on MedPage Today‘s TTHealthWatch podcast, said she had heard from a chaplain colleague who told her that a physician had said after an extubation of a terminal COVID-19 patient that “I realized I didn’t know anything about this person; I didn’t know if he had children, if he was married. I didn’t know anything.” So why not give the physicians and the rest of the healthcare team personal details — “Do they have a dog? Do they like to play poker? It’s all the things that make them human,” said Tracey.
Tracey said Garibaldi emphasized one thing: “The only way this is going to work is if it’s in the voice of the family member.” So Tracey began calling family members and saying, “Hey, I’m part of the team helping take care of your loved one … Under normal circumstances you’d be here in the ICU telling us your loved one’s story. The team would like to know your loved one better as a person; would you like to spend 15 to 20 minutes talking about them?”
So far, only one person has turned her down since Tracey began doing this in April, and that was because they didn’t like the sound of their recorded voice, Tracey said.
After getting the family member’s permission, she records the phone call and edits the comments down to 2 or 3 minutes; she estimated that she has completed 30 to 40 recordings so far. Currently, the recording is distributed to the medical staff by an administrator at the hospital, although she hopes to eventually get it added as a link in the patient’s electronic health record.
A Message to the Healthcare Team
Tracey also added a second component: the opportunity for the family member to send a recorded message directly to the patient. “I said, ‘if you were talking to your family member, what would you say? Talk to them directly.'”
“They say these things that are just unbelievable,” said Tracey. One mother recorded a message for her adult daughter, whose autistic child the mother was the custodian of. “She says, ‘I want you to know that everything is forgiven,'” said Tracey. “How can you have a more powerful example of love?” Those conversations also are edited down to 2 minutes and played for the patient.
The recordings for the medical staff are very helpful, said Garibaldi. “Just learning the simple things — What would they prefer to be called by if I met them in the grocery story? What hobbies do they like? What favorite music can we program on an iPad to keep them awake and stimulated during the day? Also, learning things like what that person has accomplished in their personal and professional life; it really puts things in perspective, to put their current illness in the context of where they’ve been, where they are, and where they might want to be going.”
Dale Needham, MD, professor of pulmonary and critical care medicine at Johns Hopkins, agreed. He noted that although the medical staff speaks with patients’ family members every day, “those conversations have to be efficient and focused, whereas Elizabeth has the luxury of spending more time, and distilling it into an audio file that we can listen to and understand and easily share.”
For example, Needham said, “we found out that one patient previously had worked at a Smithsonian museum, and we found out that one of our patients likes to tango. And we found out that one of our patients that we wouldn’t have expected — was a DJ” on the weekend, while he had a white-collar job at a law firm during the week.
“This can help us understand who the patient is, and as the sedation is lightened, it helps us interact with them in a more humanized way.” It’s also mutually beneficial because the families are aware that the staff knows a little about their loved one, he added.
“What a Gift She Gave Us”
Barbara Johnson, whose late sister was a COVID-19 patient at the hospital, agreed. “I thought it was an incredible opportunity, given that none of us could see my sister,” said Johnson, of Silver Spring, Maryland, who did a recording for her sister and one for the medical staff. (You can listen to the recordings in the player above; her recording for her sister Beverly is first, followed by the one for the healthcare team at 3:25.)
When she spoke with Tracey for the recording, Johnson said she was thinking about her sister, “What would I have said if I got to talk to her” the day she was intubated? “What a gift Elizabeth gave us.”
Regarding the recording for the medical staff, “I think that when you take away the family from a hospital room, it might be hard for doctors and nurses to relate to the individuals, and the fact that they wanted to was really quite powerful for me,” Johnson said. “I really wanted them to know what made her happy, and if she was there talking to them, what would she have told them? … I also wanted them to know — in case she woke up — that she was the kind of patient that would tell them what they wanted to hear. If she was not feeling well and wanted them to feel good about their job, she would say, ‘I’m doing great.’ So I wanted them to know, just read between the lines.”
Tracey has recruited several dozen additional volunteers — including chaplains and medical residents — to make the phone calls and edit the recordings. She also has expanded the service — which she calls “This Is My Story,” or TIMS — to include other patients in the hospital, since they also aren’t getting visitors during the pandemic. She said she hoped that other hospitals would adopt the practice.
Within the hospital, “there’s definitely a lot of enthusiasm from the medical units and also an enthusiastic response from pediatrics,” she said. “What parent wouldn’t want to record ‘Green Eggs and Ham’ for their kid?”
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