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In this episode, guest Sara L. Merwin, co-author of The Informed Patient: A Complete Guide to a Hospital Stay, shares her experience helping a family navigate their loved one’s hospital stay during the height of the COVID pandemic. With visitors not allowed in the ICU, Sara served as a remote advocate, helping the family communicate with the care team and providing guidance on getting the best outcomes for their loved one. She discusses the importance of patient advocacy and how having a helping hand can make a significant difference in navigating the complex hospital ecosystem, especially in the midst of a pandemic.
Sara L. Merwin is the co-author of The Informed Patient: A Complete Guide to a Hospital Stay.
She shares her story and discusses the KevinMD article, “The isolation of the COVID ICU: the need for patient advocates.”
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME by clicking on the CME link in the show notes. Today we welcome back to the show Sara Merwin. She is an epidemiologist, and she’s the co-author of the book The Informed Patient: A Complete Guide to a Hospital Stay. We’re going to talk about her KevinMD article, “The isolation of the COVID ICU: the need for patient advocates.” Sara, welcome back to the show.
Sara L. Merwin: Thanks. I’m so happy to be here again with you, Kevin. I always enjoy our conversations, and I’ll try to do my background and story a little differently than before, because there are always different ways to look at it.
Kevin Pho: Perfect. And I think we last talked back in December of 2020, so that was some time ago now. Just briefly share your story and journey to where you are today.
Sara L. Merwin: So I’m trained as a chronic disease epidemiologist, and as it turned out, I worked in clinical departments, mostly in hospitals. As I took on different projects and worked with different specialties, I really became immersed and part of the fabric of the hospital, working side by side with clinicians and other health care workers. So I ended up writing a book called The Informed Patient: A Complete Guide to a Hospital Stay with a hospitalist co-author, Dr. Karen Friedman. At the same time as I was learning about patient care and clinical medicine, I had family members who required my help getting through their medical journeys. So everything sort of coalesced, and although I always continued to work in clinical research and teach methods, I got pulled into patient navigation, I would have to say, by accident. But it’s been a very rewarding experience.
Kevin Pho: So you talk about the need for patient navigation and patient advocacy, especially during the COVID crisis. There were so many stories and episodes that needed that. In one of your articles, “The isolation of the COVID ICU: the need for patient advocates,” you talk about one such instance. Now tell me, how did this article come together?
Sara L. Merwin: Well, I had this article brewing for a very long time. It was very cathartic to write it. It’s actually part of a series of narrative pieces that I wrote to discuss helping patients and their families get through inpatient episodes prior to COVID. Then, when COVID hit, it turned out that not only was I following the science very carefully, but I was working on a very comprehensive critical care project with Lakshman Swamy, who created a game, a tabletop game based on the ICU environment. So I was very, very immersed in the critical care science, translating the terms and concepts for a lay audience.
And then, of course, COVID was brewing, and this was during the first year that people started reaching out to me. So I was very well positioned between following the science very thoroughly and having the day-to-day experience of refreshing my memory on critical care medicine. Although the game itself, and all the concepts and the terms that we talk about, is not at all about COVID, it turns out that many of the manifestations of COVID are just the bread and butter of critical care: respiratory failure, multi-organ failure, sepsis, and, most importantly, the need for ventilation. So it all coalesced. I was approached by people for their help because they were so overwhelmed with the frightening experience of having a loved one in the ICU without access, because during the first year, visitors were not allowed. And what could I do? I had the tools to help, and I jumped in.
Kevin Pho: Give us an example of some of those requests. What kind of questions do these families ask you?
Sara L. Merwin: As for the kinds of questions they had, they had no idea how to get in touch with the ICU. The family that my article is about, I got the call that they needed help, and they were just at a loss. The only contact they were getting from the ICU during their loved one’s COVID episode was a request for authorization for procedures. So the first thing we had to do was establish communication. They did not realize that they could be part of that process, so we initiated phone calls with the ICU so that we could get information about how their loved one was doing. They absolutely had no idea. I mean, this was totally chaotic. Staff was just pulled in a million different directions, and many were out sick. So we tried to make contact as often as possible with the bedside nurse, and also the nurse practitioners and the intensivists on the floor, to find out what this patient’s story was. So that was the first thing, opening the channel for communication.
I guess the second step for us was, in the background, researching the credentials of the care team, such that we felt confident that she was in good hands and that we would not require her to be transferred. At the same time, we started gathering information about the patient, and this was central to the process, the tracking process. We collected this patient’s data. We scribed, we asked questions. We wanted to know her medication, her ventilatory settings, what complications were potential, a status check on all her organ function, and what tests were going to be conducted. So that was the first step.
When I was first put in contact with the family, the patient was quite sick, and we did not at that point initiate video conferences, but that ultimately became part of the process. So as I led with questions, and the family members scribed or asked their questions, they became more involved in their loved one’s journey, and they gained a sense of control if they could ask what the ventilatory settings were and what her sedative dose was on a particular day. So it was very informational, which was empowering to the family, because they gained a sense of control to be part of this narrative.
Kevin Pho: How difficult was it for you to get this information and establish a dialogue with the ICU staff?
Sara L. Merwin: Well, the ICU was so busy and so overwhelmed with sick patients that it was often hard to get their attention. We walked a fine line between being good advocates for this patient, and also for the comfort of the family so that they had this contact, and being annoying. We would call, and often we’d be put on hold for 20 minutes, and then we would figure out that we’d have to call back. We never called during shift change, because we know that during handoff and nursing report there’s not a chance to speak to a clinician. And ultimately, we connected with social workers and the back office at the hospital to help us with these communications.
So I think the staff was theoretically very happy to talk to us, have our involvement, and see how much we cared. I always believe that involvement from the family sends a very strong subliminal message, or outright message, to the care team that this patient is loved and cared for. But they were very busy, and there were non-stop emergencies at this time. So if we called and they were all running to a code, we understood that we were not the priority in that moment.
Kevin Pho: What are some things that families can do now? Certainly, we’re three-plus years into COVID, and hopefully things aren’t as busy as they once were. What are some tips that you could share with families to advocate for patients in a critical case?
Sara L. Merwin: Whenever possible, it’s so important to be on site, and if that means sleeping in a chair next to the loved one in the ICU, or in the family lounge outside the ICU if they’re not permitted, just be on site. Families are very attuned to subtle changes in their loved ones that often the monitors don’t pick up and the clinical staff might not pick up. I think delirium is a great example of this, where families can play a central role, being vigilant for the onset of delirium, which we know in the ICU is associated with very serious post-acute syndromes that can persist. So that means reorienting the patient and making sure that they have all their assistive devices.
In the ICU, it’s a little bit different, because many patients are sedated, and that’s a place where it’s important for families to intervene and make sure that patients have sedation vacations and do not remain unconscious for too long and too deeply sedated, so they’re allowed to come out of these paralytic and sedative episodes so they can interact with the world. And the A-F bundle, which was created by, I think it’s the Society of Critical Care Medicine, addresses all the preventive strategies for offsetting delirium in the ICU.
Kevin Pho: Now, I asked you for advice for family members, but let me reframe it and ask what kind of tips you can give to the clinical staff in terms of engaging families. Because it’s been established how important that is, what are some ways that the clinical staff can engage with families in a critical care setting?
Sara L. Merwin: They can encourage clinical staff to listen to the patient, and in this case, it’s very important to listen to the family members. They know their loved one best. Clinical staff can engage with the family and the patient to find out as much as they can, to find out what kind of music they like, to find out what’s important to them, and to encourage family participation to the extent that it’s possible. Families in the ICU can help patients get out of bed, they can help feed when patients are taking PO, and they can be involved in many ways of giving comfort. And patients and families should, whenever possible, attend bedside rounds and be included as participants in that process.
Kevin Pho: Now, what can families do in cases where they don’t feel like they’re being heard? What are their options at that point?
Sara L. Merwin: If they don’t feel they’re being heard, I guess the first place to take that would be to the nurse manager who oversees the bedside nurses, or to engage with social work to express frustration about this. Some hospitals have ombudsmen to help patients navigate these difficult situations. And if they’re truly not getting the response that they want, they have to start writing letters or making some noise. I generally believe that you can catch more bees with honey, and that’s the approach that I would take. As an example, when we couldn’t reach staff, we didn’t get angry, but we got proactive. We went around it, and we were willing to be ultra-flexible about when we could interact remotely with the clinical staff.
I would say one hiccup we encountered was that the bedside staff was so busy that once we started having video chats with the patient during the patient’s spontaneous breathing trials, where she was slowly weaned off the ventilator, sometimes the nurse would leave the room and leave the patient on the feed with the daughter. It was terrifying, absolutely terrifying, for this grown adult child to watch her mother gasping for breath, because sedation vacations with spontaneous breathing trials can be a very torturous experience. So we actually went back to the social worker and patient services and said, “We’ll do the video chats whenever you want, but you cannot leave the feed on and not be bedside.” So that’s an example of some proactivity that was helpful to us.
Kevin Pho: We’re talking to Sara Merwin. She is an epidemiologist, and she’s the co-author of the book The Informed Patient: A Complete Guide to a Hospital Stay. We’re talking about her KevinMD article, “The isolation of the COVID ICU: the need for patient advocates.” Sara, my final question: Tell us some of your take-home messages that you want to leave with the KevinMD audience.
Sara L. Merwin: I guess I’m going to combine the take-home messages with your question about what I am passionate about now, because that is what I’m thinking about all the time. I’m passionate about disarming misinformation and disinformation, and I’m concerned about long COVID. I guess my take-home message is that we should all be paying a whole lot of attention to the havoc that the cohort of sufferers of long COVID is going to play on our already very fragmented and damaged health care system. I guess that’s my parting shot. And we need to prepare for the next pandemic with infrastructure and resources, because many of the experts in infectious diseases believe that we will see another pandemic, and not in a hundred years.
Kevin Pho: Sara, thank you so much for coming back on the show, and thanks for your time and insight.
Sara L. Merwin: Thank you for listening.
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