Explore a program that allows patients who are unable to speak to share their stories through interviews with family members and loved ones. Listen to the episode on the go on Apple Podcasts, Spotify, or anywhere podcasts are available.
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Marie Brown, MD: Hello, and welcome to today's STEPS Forward® podcast. I'm Dr Marie Brown, an internist here in Chicago, and Director of Practice Redesign at the AMA. Today on the podcast, we're joined by a wonderful guest, Elizabeth Tracey, Chaplain and Director of Johns Hopkins' Health Newsfeed, a medical broadcast journalist, and creator of the This is My Story Initiative. Thank you for being here, Elizabeth.
Elizabeth Tracey: Marie, thank you so much for giving me this opportunity. I really appreciate it.
Dr Brown: Great. Why don't we get started by having you tell the listeners a little bit about yourself and your background?
Tracey: Well, thank you for this, again. I've been in Hopkins for 22 years. My first role at Johns Hopkins, I'm a broadcast medical journalist. So, every day I produce a one-minute radio spot that's broadcast nationally on CBS Radio, and also on a number of national and international media outlets. What I do is I take a look at the peer review literature on a daily basis, and I mean daily, seven days a week. Then, I reach out to the appropriate Hopkins expert and I say, "Okay. What do we think about this?" So, that gives me a lot of exposure to the faculty and a tremendous amount of exposure, of course, to the way medicine has changed in those 22 years, for sure. My other role at Hopkins is I'm a board-certified clinical chaplain. In that role, I'm in the medical intensive care unit, the MICU, at Johns Hopkins Hospital. I've been there for about eight years.
Several years ago now, I started a program at Johns Hopkins Hospital that's spread throughout the health system that's called No One Dies Alone, or NODA. It provides a trained volunteer to be with patients at the time of death if family or friends are not present. During the pandemic, of course, just like so many other people, we had a shortage of PPE so I was on the MICU. In the chaplain role, I kind of got sidelined, but I was doing my other day job and interviewing a provider on the MICU, a physician named Brian Garabaldi. I was interviewing him about point of care ultrasound for cardiac and pulmonary abnormality, secondary to COVID. I did my typical thing, which is switch hats on him. I said, "So Brian, tell me how it's going with all of these patients." He said to me, "Oh, Elizabeth, it's terrible. They're all intubated, sedated, and prone, and no one is here, telling me their story."
In just a moment, it came to me that I could help to tell the story. So, I said that to Brian. Brian has known me for many years, and we've worked together with different patients. I said, "How about if I reach out to the loved one of the patient and find out who they are. 'Tell me something about them.' Then, I'll edit that down to a short audio file that, then, the team can use on rounds." So, we named this TIMS, that stands for This is My Story. It's been going on since April of 2020, now.
Dr Brown: Wow. That's amazing. I think what strikes me, it's such an incredible story. It really moved me. But, tell me more about what the staff in the MICU team was going through. You mentioned what Dr Garabaldi experienced. What were some of the other experience or emotions during that incredibly hard time, the beginning of the pandemic, when the acuity of the patients and what we didn't know, was overwhelming, and the patients were not doing well. What else was going on with the team, that you noticed?
Tracey: I think that you've put your finger on so much of what was going on. I think there was a sense of if not futility or despair, something that was really close to that. We didn't know exactly what to do, and how to manage these patients. And as I said, they were almost uniformly, at least on the MICU, intubated, sedated, and prone. So, it reminded me in many ways of that movie Coma, where we saw those patients kind of in suspended animation. Everyone felt this disconnect between this care that they were rendering and not really understanding anything about these patients. Then of course, so many patients, especially on our unit, were dying. So, there was no way to ratify their humanity.
I think that that's a central aspect of medical care. In fact, I would call it, from my seat in the bleachers, the most central aspect, the humanity, not just of the patients, but of the entire circle that surrounds them, and of the entire medical team. This is a bunch of humans who are providing this care. When we know something about our patients, I think we're able to resonate with that and allow our compassion to be extended. When it's not there, there's no information, we really don't know who they are. It's just really distressing.
Dr Brown: Right. And, I think we forget how difficult that is for a provider. Having practiced for over 30 years, the joy that I received, personally, from knowing the details of my patient's lives was what gave me tremendous joy. These were generally pretty healthy people. Going through life-threatening illness like COVID, and then patients succumbing to it, to not even know who that person was, and to be the only person there, or just the team there, without family around to experience it was very morally distressing.
Tracey: Yes. I would absolutely agree with that.
Dr Brown: With so many physicians in the MICU experiencing burnout themselves, overworked, frustrated with lack of PPE, lack of knowledge, where did you even start when you had the idea? How did you get that initiative off the ground?
Tracey: Well, after talking with Brian about it, we of course went to all the appropriate people, the medical director of the MICU at the time, also social work, who clearly are involved with these kinds of information gathering initiatives relative to patients who were in there without loved ones around them. Made sure that we weren't stepping on anyone's toes in gathering that. Because of my expertise in creating short audio files that can get right to the point of things, then I was able to create that aspect of it. Then, we went to marketing and communications, and we asked for a place to house these files that was HIPAA compliant, so that it was a secure server. We also had a number of administrators on the unit. It was really truly a team effort of trying to address all the different moving parts in order to enable these files to be easily accessible by the team.
The medical team, in general, used them. The physicians used them on rounds. The nurses were able to listen to them whenever they had the opportunity to listen to them. Then, every other person who had contact with the patient, respiratory, PT, OT, social work. Anybody could listen to those files because they were hyperlinked in the electronic medical record. So, we had to, of course, have that backend piece also established so that we were able to reduce barriers to their utilization.
Dr Brown: When you were starting out, did you run into any pushback, or skepticism, at first? And if so, how did you overcome it?
Tracey: I'll tell you a story because I just love this story. One of my really good friends is a physician on the unit, his name is Dale Needham. Dale and I have known each other for many years, with both hats. He is one of the critical care medicine physicians who's on the MICU. When I approached Dale, when I first started to do these TIMS files, and I said, "Dale, I'm doing this new thing and here's what it's about," he was very skeptical. He said to me, "Elizabeth, I'm going to try this. The only reason I'm going to try it is because I know you." So, then he tried it. The way that the unit works is the team has a two-week time period that they're attending. That was on a Monday. On Monday afternoon, he sent me a text and he asked me to do it for all of his patients. So, he had seen what an impact it could have on the team, and on the morale for the team who were caring for these folks.
I think that that was the thing that really made the difference. There were people who were skeptical. Then they listened, and then they saw the impact that it could have both on themselves and on the whole team. The other place where it was clearly helpful was in transitions of care, being able to really personalize the discussion with loved ones of someone whose care was going to be transitioned by listening to that file and knowing something about who they are.
Dr Brown: So, let's talk a little bit more about the interview itself and what kind of questions you asked. You did the initial interviews, as I understand it. Then, they were edited down to two minutes by medical students. We'll talk about the impact on the medical students because I think it would've been powerful in and of itself. So, what kind of questions did you ask and of whom? How did you decide who to reach out to? Was it the next of kin, or whoever was in the chart as noted?
Tracey: That's correct. So, the LAR, the legally authorized representative, the first one, that was the person we would start with. Usually, nursing would know that there was someone else who might be more appropriate to talk to, who was more engaged in the person's care. So, we would start there. As you know, there are generally more than one entry in that particular part of the chart. So, if we weren't able, after three attempts, to get in touch with the first person, we would move on to the next one.
Dr Brown: So, these were patients who were unable to speak for themselves, were in the ICU for at least three days, and because of COVID at the time, we weren't allowing any family members. Were those the three criteria?
Tracey: Those were. And, the reason that the three-day window was important was because that's how long it took us to get in there to record it, to get it edited, and then be able to get it posted. We've significantly reduced that now.
Dr Brown: Wow. That's impressive. So, back to what kind of questions. We know who you asked, but what kinds of questions did you ask? I know these are published. These questions, I think, are published in one of your journal articles.
Tracey: That's correct. Again, from my other hat, I spent an enormous amount of time interviewing people. So, I would just call and just say, "Tell me something about, first of all, the relationship." So, that was revelatory, if they were married, if they were brother and sister, or so forth. Asking follow-up questions, secondary to that, was really pretty easy. I used to love to ask, "If you were going to out your brother at a cocktail party, what would you say?"
Dr Brown: That's a good one.
Tracey: I'd try to get something about this person that was really... But, you don't have to scratch very far. I do have to say that in this circumstance, what impressed me again and again, and it still impresses me, is the generosity of people. They really want to help. They really want to be involved in the care of their loved one so they are so willing. We would have families who would say to us, "Hey, could you also talk to my father and to my cousin? We're really close to this person." They wanted to really engage everybody in this process of trying to round out who this person is for the team, and to help to benefit their care. So, initially it was really kind of an open-ended interview. I would say the interview would typically take 10 to 20 minutes.
Now, what we did, after we'd been doing it for about a year, was we surveyed it. We distilled those questions down to just four that provide the biggest yield, in terms of information. Those questions are, "How do you want to be addressed?" You're well aware, that's an important question, not just because of an issue of respect, but also because of the high incidence of delirium in the ICU, and even elsewhere in the hospital. So, it's really important to be addressed how you're accustomed to being addressed to help bring you back into today, right now, right here, versus somebody calling you something that you're not accustomed to. So, that's one question. The other question is, "What brings you joy?" The third question is, "What does the medical team need to know about you to treat you best?" And, the fourth question is, "What brings you peace?"
Those four questions really result in an incredible variety of answers. I've since conducted a study just on a medicine unit with patients themselves. When we started the study, I thought they were going to be really pro forma answers, and they are so variable. It's amazing how different they are, one from another. So, those are the four that we're using now. That renders that interview extremely quick, five minutes or less. It also facilitates the editing process.
Dr Brown: Now, those are questions directed to the-
Dr Brown: ... the patient who may be undergoing, or about to undergo, an intubation or a progression of their disease, where they won't be able to speak. What about the questions that you asked the loved ones? What were those structured interview questions like?
Tracey: So even right now, we're still using those same four questions with the LARs on the MICU. We just ask those same questions, "What would your sister, brother, husband want to be called?" And, so forth. We ask the legally authorized representative to answer those same four questions. Then, when we ask them of patients themselves, we ask them, as you said, previous to a procedure that might render them non-communicative, at least for a while. But, we're also asking them of just patients in general, just on a regular old med-surg floor. Again, the variability is truly remarkable.
Dr Brown: Can you share some of the stories that loved ones provided?
Tracey: Here's one of my favorites. I had a patient who... I can't remember exactly what was going on with him. He had been hospitalized, and was predicted to be hospitalized, for a bit. When I asked him the question about what brought him joy, he said, "Well, I'm a goat farmer, and I farm my goats for meat. My goats are just the coolest animals on the planet. I give them all names." I was so floored by that. I thought, "Oh, my gosh. And, then what? They come and take them away to slaughter them, and you're like, "Bye, Bill. I really loved knowing you." I mean, it was amazing. So, we put that in his file, and the team listened to it. He said to me afterwards, he loved it. He knew that they had had enough regard for him to listen because they all asked him about it, about goats, and about what that whole thing was about.
That's just one example. There's so many I could tell you. Another one on that same unit, which has a lot of patients who are being evaluated for transplant, was a man in his 50s. When I asked him, "What does the team need to know about you to care for you best?" He said, "I am so blessed. I have a wife who loves me. I have three beautiful children. I think what the team doesn't understand is just how lonely this process is. I feel profoundly alone waiting for my MELD score to put me into a place where I can get a liver. And then, even then, it's an incredibly lonely journey." It broke my heart to hear that.
Dr Brown: For sure. I think, in one of your publications, I read that the patients, when they did recover and were able to listen, they'd like to hear it played back.
Tracey: Yes, indeed. I'll tell you another story. This just happened very recently. I had a patient who had sarcoidosis. He was on the unit having a lot of symptoms, and the team told him that he was not a candidate for transplant. I recorded the file with him. When I said, "What brings you peace?" He said, "The knowledge that this will not go on forever." I said, "What do you mean? I guess I don't really understand what you mean." He said, "The knowledge that I won't always be in pain. I won't always be struggling to breathe. That there is going to be an end to this." I said, "Wow. That's amazing. No one's ever said this to me before, that "Brings you peace." He said, "Yes." He said, "I've been sick for a long time. When you're sick, and really sick, for a long time, you get a lot of opportunity to consider these things. It does bring me peace that there will be an end to this."
And, he died two days after that was recorded. The family took so much comfort from that, from hearing that. So, yeah. So, it really can have a lot of impact on everybody concerned.
Dr Brown: Any other reflections on what other team members felt, after they were able to learn more about who they were caring for?
Tracey: Well, one of the nurses said to me that she felt that it really helped her to personalize her care, and to recognize the privilege of the position that she was in, to be able to be somebody to care for this person when family and friends were not able to be there. She could see where she was so important, that she was really in the role of their hands and their care. Another resident said to me that it slowed him down. Once he listened to it and he knew something about the patient, then he really kind of said, "Okay. I'm going to care for this person, and kind of take a couple more minutes in this situation than I might have otherwise."
Dr Brown: Right. And I would imagine, knowing who you were caring for just made the work easier and more valuable, personally.
Tracey: I think that's right. The other part of it, that I think I feel pretty strongly about, is that, or I hope, is that it enables people to resonate with their own humanity. I just had a patient just this past week who was talking about... She was just this really good bowler. When you hear that, how can you not think about bowling and times that you've spent bowling, or not spent bowling, or what a terrible bowler you are, or whatever. I mean, that lets us all sort of be in the same place with this common thread. It's my belief that that helps to improve care.
Dr Brown: Absolutely. To humanize it at every level. What about the medical students experience? I know you did the initial interviews, and I know you're expanding this program so other interviewers are doing it, as well. But, in the initial study you did the interviews that took, I think you said by phone, 15 or 20 minutes. Then, they were edited down by medical students to two minutes. What was the experience, or can you share some of the reflections that the medical students had listening to these 15, 20-minute interviews?
Tracey: Well, the first thing, of course, I'd like to say about the medical students is, again, I just find it amazingly generous that they were willing to step into that place, and to learn this new skill. As you are well aware, this is not a time when you have a lot of discretionary time. So, being able to do that, and make a commitment to doing it, was incredibly impressive. They almost all reported, and we had quite a number of them, that they really enjoyed it, and that it gave them a completely different window into what rendering medical care was really like. We're still working with a couple of them now, and hope to work with a lot more of them in the future.
What we're doing is we're developing an app where the app will automate the recording and the editing process. We're hoping to incorporate the medical students into the team that actually goes and does the recording at bedside. Then, utilizes it for the rest of the team. Maybe, even they can present this patient at rounds with the human perspective.
Dr Brown: So, that brings us to a little bit of the logistics. So, I think the turnaround time was two days. The medical students edited it. Where was it accessible? That was on the electronic health record. Was that easy to do, and who had access to it?
Tracey: There was no way to actually house the audio file itself into the EHR. So, we hyperlinked it in the summary page of the chart. Then, what had to happen was people needed to copy that and put it into a browser, and then listen. The file itself, as I said, was on a secure server. So, the only way that you could even access this whole process was when you were logged in in a Hopkins' system, and it recognized you as a user. So, it was not accessible to anybody on the outside at any time, and it still isn't.
We use that hyperlink mechanism for people to be able to use it. What we're also doing right now, in addition to developing the app, is working to get it fully integrated into Epic, which is our electronic medical record provider. We feel that that would just remove one more barrier for people being able to use it. We are also thinking that it should be a part of the durable medical record. This patient I just described to you, the person who's waiting for his liver transplant, he's going to have multiple encounters with our system. We don't want to go back to him every time he comes to the hospital and say, "Could you record another TIMS file?" That information is still relevant. So, as long as that information is still relevant... Of course, patients could be given the opportunity to rerecord if they felt that that was something that they needed to do at that point.
The other part that we're working on, right now, is getting a transcription of the file. So right now, with only the four questions, those files are about a 1:30 or sometimes even less than that, so they could be even a minute-long. We're also trying to get this transcription because some people on the team have said that it would just be easier to read it. For the most part, listening to it is much better. Everyone likes that because it allows them to multitask. They can chart while they're listening. There's also a lot of intangibles that are conveyed by voice, that we are sensitive to about who somebody is. So, listening to it turns out to convey a lot of information, also.
Dr Brown: Yeah. I bet that would be very powerful, to listen to the voice of a spouse of 50 years, or a twin sister, knowing who that person was and hearing their own voice. So, a couple more questions. The first journal piece, on TIMS, that you published was in '21, in the Journal of Religion and Health. Can you share some of those findings that we may not have already discussed?
Tracey: Those were three case studies that basically just followed patients who had had a TIMS file, and how it impacted on their care. One of them was one of the patients I mentioned, who had had a liver transplant. The other one was the sister of a woman who died of COVID-19 on the MICU, and describes how the file impacted that whole process. Then, the third one was someone who educated me in a very profound way, the mother of a young man who is very disabled, and how she wanted him to be known. So, that's that paper. Then, there's a subsequent one, of course, where we describe how we spread this whole thing throughout the hospital. Now, we have a third one that's just about to be published that's looking at specifically the impact on the team in the MICU. We have a fourth one that's underway that's looking at the four questions and how patients experience that, and the teams, "How did it change?" Then, we've got a couple studies underway, right now.
Dr Brown: Yeah. So, it was very intriguing, probably to the listeners too, about how you might spread it. Not every chaplain has the medical broadcasting skills that you certainly bring to this. It's really a very practical approach, and very generous of you and your team to share this incredible program that has changed, I'm sure, the experience of not only the patient, not only the trainees, but the care team, the nurses, the doctors, the physical therapists, right there at the bedside, in a very, very positive way, and help them get through what was a very difficult time, and will help them get through future difficult times. Any other thoughts about spreading this program, and how you might grow it and evolve it in the future?
Tracey: Well, as I said, we are developing an app, right now. We're developing the app for the iOS operating system initially, since that's what everybody has. This will enable everyone to do this so you won't really need a chaplain to do it. You really can have almost anybody at bedside asking the patients these four questions, or asking the loved one who is there in the hospital the four questions. Then, the app will also edit it and render it into a form that can be then added to the electronic medical record. So, we're really hoping to reduce barriers for people every way we possibly can. We're also hoping, of course, that once we overcome the barrier of full integration into Epic that that will be an easy thing to do.
With regard to expansion, of course, the other places we think are pretty logical are housing such a file in MyChart. Patients could even just call a number when they're ready. They could be advised, "Hey, we'd like you to record this file." Then, "These are the questions. As soon as you're ready, call this number, and we'll record it." Same thing, that same background of editing and noise reducing, and all that stuff could still be taking place. Then, the patient themselves could review it before it gets posted to their file.
Dr Brown: Well, thank you so much. I was really touched by all those stories. To think how powerful an intervention this is to have a loved one share, in two minutes, something about the patient at such a critical time in their life, or toward the end of their life. The solace and peace it brought to the team members, the patient, and their loved ones is just extraordinary. You are extraordinary, Elizabeth. So, thank you so much for sharing the story.
Tracey: Oh, you are very kind. Thank you so much for giving me this opportunity. I really appreciate it.
Speaker: Thank you for listening to this episode from the AMA's STEPS Forward® podcast series. AMA's STEPS Forward® program is open access and free to all at stepsforward.org. STEPS Forward® can help put the joy back into medicine by offering real-world solutions to the challenges that your practice is confronting today. We look forward to you joining us next time on the AMA's STEPS Forward® podcast series, stepsforward.org.
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