In today’s podcast we talk with Audrey Chun, Professor in the Department of Geriatrics and Palliative Medicine at Mount Sinai, and Sheila Barton, a social worker in the Geriatrics practice at Mt. Sinai.
Mt. Sinai has a HUGE outpatient geriatrics service, with a mean age of 85. We talk with Audrey and Sheila about the challenges they face in overcoming obstacles. Everything is harder now, such as how to get basic needs met for older adults isolating in the community, such as food and assistance with basic activities with daily living. Higher order concerns are challenging as well, including conducting advance care planning conversations with patients and family members over the phone, and finding a home hospice agency willing to care for a COVID positive patient. We talked as well about this article by Jason Karlawish arguing that caregivers are essential health workers who should be allowed into hospitals to care for their older at-risk-of-delirium relatives.
Oy. Tough times. One thing Audrey and Sheila emphasize repeatedly is how supported they feel by their health system, by volunteers, and even from their own patients who message them with words of encouragement and kindness.
New Yorkers are tough, but they also have big hearts and rally around one another time and time again when faced with challenges.
On additional note, if you’d like to sign up for palliative care COVID discussions, here’s a link to sign up to participate in weekly chats, thanks to Zachary Sager and Leslie Blackhall.
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, this is I think number five in our COVID specials for the GeriPal podcast. And who do we have on today?
Alex: Today we have joining us from New York city. We have Sheila Barton who’s a social worker with the Mount Sinai geriatrics practice. Welcome to the GeriPal podcast, Sheila.
Sheila: Thank you.
Alex: And we have Audrey Chung who is professor in the department of geriatrics and palliative care at Mount Sinai. Welcome to the GeriPal podcast.
Audrey: Thanks for having us.
Eric: So we’re going to be talking about the frontline experience, what you’re dealing with right now with this COVID pandemic. Before we go into that, we always ask, do you have a song request for Alex?
Audrey: For this week? I think our mood is mad world.
Eric: One of my favorite movies, Donnie Darko, Mad World. Alex can give us a little bit of mad world.
Alex: [singing] All around me are familiar faces . Worn out places, worn out faces. Bright and early for their daily races, Going nowhere, going nowhere. Their tears are filling up their glasses . No expression, no expression . Hide my head, I want to drown my sorrow . No tomorrow, no tomorrow . And I find it kind of funny, I find it kind of sad . The dreams in which I’m dying are the best I’ve ever had . I find it hard to tell you, I find it hard to take . When people run in circles it’s a very, very . Mad world, mad world.
Eric: Audrey, what did you think of that song?
Audrey: I think it kind of captures the mood right now we’re in a little bit of a strange time and I don’t think any of us were fully prepared for what we’ve been dealing with currently. And in spite of that kind of melancholy it and dark place that that song is coming from, there is still a lot of hope and beauty and I think that song expresses that in spite of these kind of mad times. Yeah.
Eric: Yeah. I think this is what I found so valuable talking with you. I think currently New York city has a quarter of all cases. It’s, it’s astounding what’s happening over there right now and for example, I think San Francisco right now is just has 400 cases. We’re not seeing what you’re seeing right now. We’re expecting we will, we’re preparing for it. I think talking to individuals like both of you about what we should be doing to prepare it is important. Even just hearing your lived experience, what’s life like right now at Mount Sinai?
Audrey: It really is unprecedented. I have to say that as an organization we’re a very large health system that includes a medical school that in spite of all of the challenges, the community has really come together to say we’re here for our patients, we’re here for each other and we’re going to figure out a way to deal with this. It may not be pretty all the time, it may not be what we wished for. And at the same time we’re in this together and we’ll figure it out and we will get through this. So whether it is about protective equipment, whether it is about figuring out a way to take care of our patients in the community, being creative about how we need to flex and change things and do things in a way we’ve never done before. I think the resilience and the creativity of people in our communities specifically has been inspiring, so as exhausting and as frightening sometimes as the times may be, I think it also highlights just who we are as humans and what we’re capable of doing.
Alex: That is an inspiring message. Thank you. Eric, you’re going to say?
Eric: Yeah. Do you know what the numbers are looking like right now in the hospital for you guys?
Audrey: Across our health system, as of today we had I think over 1600 patients who are positive for COVID. A small portion of that are in our ACUs, about 300 I think. And the, we still have capacity. I think one of the lessons that we learned is you have to ask for help and accept help from a variety of different places. So the fact that FEMA is here, the fact that the US Naval hospital ship has arrived, the fact that 10 hospitals have come up in anticipation, we haven’t had to build those areas yet. And we’ve able to manage with the resources that we currently have.
Audrey: But I think there’s some people think of that as maybe being more frightening. For me it’s actually comforting to know that we have a little bit of a cushion and that as a national community that we’re there for each other and I think our governor has done an incredible job. I may not have always agreed with his politics, but he really has mobilized and sent out this message that you’re helping us and then we are going to be helping you as we learn from this and as hopefully it doesn’t spread as dramatically across the country. Although, we anticipate that it likely well. And so the lessons we’re learning now we’re hoping can impact your experiences in the future wherever you’re at.
Eric: And Sheila, what’s it like for you right now?
Sheila: Well, right now I’m working remotely with our patients on the phone. We have about a 3000 patient clinic, and the average patient is 85 years old and they have a lot of functional problems. So I’m working with them on the phone. The type of work I’m doing has changed. The urgency is profound. People are calling me about how to get food. People are calling me about their home health aides getting sick and they need replacements, but there’s none available. And the most calls I’ve had from families and patients have been about end of life issues.
Eric: What kind of calls are those? What are you talking about?
Sheila: Well, I’m talking about our patients are fairly sophisticated because on day one, they are educated about advanced directives. Well, they have healthcare proxies, they have durable power of attorneys, but they don’t want to die alone. So the conversations I’ve had with them have been, “Well I know I’m 85 years old, I’ve lived a full life, but I want somebody to know I’m dead so my wishes can be carried out.” So I had conversations with people about making friends with a neighbor, giving them a family member’s name and number, letting them know what funeral home they have made arrangements with, those kinds of conversations. And conversely with family members, I’m getting a lot of family members saying, “How do I have this conversation with my mom? I feel sure she doesn’t want to be in a ventilator if she gets this.” But I’ve been advising people about how to have these conversations with their loved ones. It’s been a heck of a week.
Alex: I was going to ask Sheila how these conversations are different in the era of COVID.
Sheila: The urgency is there and I think people are coming to terms with the fact that if their mother or father has many co-morbidities, the likelihood if they get this virus is that they will die and they will die quickly. And by and large they’re honored to be able to honor their wishes, but they would like to have some clarity. Usually when you sign a healthcare proxy, you say, “Oh, you know what I want.” But I think the level of comfort would increase with the health care proxy if they knew exactly what their mother or father wanted. Do they want to be intubated? Do they want a feeding tube? What exactly do you want? So those are the conversations I’ve been having with family members.
Eric: Any words that you’re using that seem to be effective? Things that we should try elsewhere?
Sheila: Well, I don’t know. I kind of labeled what I do as empathic pragmatism. Really the son or daughter is walking into the mother’s house with head gear and a mask and gloves and other equipment on, in order not to transmit the virus. And it’s a perfect opportunity to have a conversation not only about what the mother or father wants, but also, a conversation about just life in general and what the son or daughter would want for themselves. So it’s been a back and forth. You normalize the conversation into the moment and the moment is here, unfortunately.
Alex: And Audrey coming back to you, what advice would you have for geriatrics practices, health systems, palliative care practices that are a week or two away from where you are now? How could they prepare for what you’re going through?
Audrey: Yeah. We had to mobilize really quickly to transition from face-to-face types of visits, whether it was home visits or whether it was having people come into the practice to see us very, very rapidly to tele-health, whether it was video visits or to the telephone. I think it really highlighted health disparities and access to different kinds of resources. While most of us are used to being able to download an app pretty easily and being able to connect. For our patient population for a variety of reasons, having difficulty with technology, not having internet access, not being able to understand the difference between doing something on your desktop versus doing it on your phone. This idea of a video visit, once they can get onto it, they love it, it’s great. But it takes an hour almost for most of our patients to do the downloading and the getting on if they’re able to do that.
Audrey: And these are only for people who have access to our portal. So we’ve been really challenged related to the video visits and we’re thankful for the telephone encounters because that can be our default. But being able to pivot quickly into that realm was key actually for not only our patient population but across an ambulatory network to be able to provide those kinds of services. So in anticipation of that, there was a huge lift for even the providers to understand how do they connect to a video, how do you even schedule that if that’s not a usual part of your daily care? So that if anything can get started right now, especially with some of the changes in reimbursement. That’s just a practical thing to consider. The other is that we as geriatricians and palliative care providers are kind of experts at managing symptoms at home.
Audrey: That’s what we do. We try to keep people out of the hospital, we try to honor wishes, we try to do all of these things. That only works when you have a network of support to be able to do that at home. So if previously you could say, “I’ll just send someone to dry your labs at home or I’ll do a chest X Ray. Because we have those services available.” Well when those services don’t have enough protective equipment and can’t go into the homes, that’s no longer available. When there’s so much oxygen being ordered for people to take care of this added need, then it’s not so easy to just, write your order for oxygen and have it delivered that day.
Audrey: Even for home care and hospice services because of lack of protective equipment. So it’s really anticipating how are you going to manage these symptoms if you don’t have your usual set of supports? And even family because they may have to self-isolate because either they themselves are infected or they have immunocompromised, they have to protect themselves.
Audrey: Even that usual support of friends and family is no longer there. So what Sheila was alluding to and the people are calling, they want to talk about it, I’m getting these calls, “I’m not sick, but I just want to know if something happens.” They want step-by-step, what do I do? “I don’t want to go to the hospital, tell me how I can stay at home.” So this idea of on the fly comfort packs for people who develop symptoms, how are they going to administer that to themselves if they can’t read or they have arthritis? And normally their daughter is the person who does that for them and their daughter can’t get to them or their home attendant is unable to get to their homes. So there are a lot of logistics that just fall through in normal world that we don’t have access to, so it really requires creativity.
Audrey: So that’s what we’ve had to do in a very short period of time, is figure out how do we do palliative care at home if there is no hospice for people who are hospice eligible? What do we do for just routine care to make sure we don’t put our patients at increased risk and yet we really need tests or some additional information to take care of them? How do we connect with them if they don’t have access to a video or limited access to a telephone is really a challenge-
Eric: Can you give me some examples of how you’re solving some of those issues if you’re solving them.
Audrey: Yes, so some of them are system level. We’ve been working really hard to try to develop these toolkits and packs to deliver for patients at home. So everything from encouraging all ambulatory providers to have these conversations.
Audrey: I think we’re used to having them in geriatrics and this is an area where we can help our colleagues a lot, in how do you even introduce the topic? I find actually our patients and their families are introducing it to us. They’re the ones bringing it up and they want to talk about it because it kind of helps to have a plan when you’re afraid of something. To have a concrete plan is actually very helpful. But many providers are not comfortable having or initiating those conversations. So working with our colleagues across the country and getting those scripts out. All of you are familiar with the vital talk scripts that we’ve adapted for our providers here. And so having that available, having clinical decision support within our electronic medical record that takes people through the definitions of trial of treatment and comfort oriented care versus what does it mean to be DNR, DNI? And really having people be able to template that and put it into the orders including a homemade comfort pack for people who are symptomatic.
Audrey: So maybe they don’t have access to hospice. But here are the medications and this is what you prescribe and how many you prescribe for various symptoms, for providers who may not be as familiar.
Eric: Are you seeing that hospice agencies are still taking individuals with COVID or what’s happening on the hospital front?
Audrey: Every day is different. So every day an agency is able to or not able to, are able to or not able to. And a lot of it is related to protective equipment. And so if they don’t have the tools that they need to take care of a patient safely in their home on that day or those days, they’re really not taking people who are COVID positive. And on other days when they’ve got their shipments and they’re able to, then they open it up again. So I feel like on a daily basis we are taking stock of what we have access to for that day.
Eric: And Sheila, you mentioned about caregivers not coming in. When that happens, how are you helping families through that and patients?
Sheila: It’s a nightmare if the families are privately paying. If you call 15 or 17 agencies, you can find somebody who’s willing to take on the case cause they have protective gear. That’s the key.
Alex: But you have to call 15 or 17 before you find one?
Sheila: I did yesterday for Audrey’s patient.
Audrey: And she did it. She’s a miracle worker, she found someone.
Sheila: If you’re on Medicaid and you’re getting your services through Medicaid, it may be a longer transaction trying to get somebody in. We have an emergency set up at Mount Sinai. We have connections with certain HRA people and we try to push to get whoever’s available in. That being said, the patients are afraid of strangers coming in because they may carry in the disease. So it’s kind of-
Audrey: Yeah, it’s another layer of not wanting the stranger in the home. We already encounter that in usual times and then now, yet one more thing that is frightening about having a new person in your home, caring for you and in intimate ways.
Eric: And how are you dealing with the common geriatric issues like talking to people on the telephone who are hard of hearing? Do you have any tips or tricks around using telemedicine, telehealth in the geriatric population?
Audrey: Patience, that’s all I have to say.
Sheila: Raise the volume of the phone.
Audrey: And social or physical distancing has been helpful because as we are talking with our patients at high volumes we’re not having to yell at each other’s face, so that’s been helpful. If they have someone to help them to navigate the technology, that’s really great. So right now, even telling in preparation you should be, whenever you contact the person you should ask them, “Do you know how to access the video visit? Can I help you or can someone in the practice talk you through it?”
Audrey: Because to do it now makes it available when there’s an emergency situation. And the telephone too. I mean that’s a usual challenge, that’s not anything new and being able to discern what’s happening. But most people have a phone that they have access to. So that’s been a lifeline through it all. I think what’s interesting is that we have patients who are calling or emailing or messaging through the EMR checking in on us. So Sheila and I have had a few messages that are like, “I’m worried about you. Are you okay? I’m praying for you.” And it’s, incredible.
Sheila: Yeah. They are in wheelchairs with so many problems and they’re really worried about us. It’s very sweet.
Eric: Are you doing anything different for your practice patients where they get admitted to the hospital?
Audrey: So we’re trying not to get them admitted, but it’s inevitable. So unfortunately we’ve had a few deaths and I have two patients in the hospital now. It’s not that they’re so different. I think there’s a lot of education to the families and to the patients about what they can expect. Especially because of the no visitor policy that we have right now. It can be all the things that we try to emphasize for patients as they come in to decrease hazards in hospitalizations, it’s out the window. We don’t have people who can reorient the amount of interaction going in and out of the room. We’re actually trying to limit that as much as possible to protect both parties, especially when it’s an unknown status about whether they have infection or not. And so those sorts of things are what’s dramatically different.
Audrey: A lot of the ways that we protect our patients from the hazards of hospitalization, they’re just not feasible. And so we’ve been trying with technology to do it through iPads, but again, we have this technology problem. Many of our patients being able to access it. So our nurses have been trying to assess the people who are in the hospital as they’re taking care of patients. Even on our teams, normally it’s a whole team that goes into each room to speak with the patient and get to know them and take care of them. And now it’s typically a single provider who will go in, just because we’re trying to limit exposure as much as possible while still taking care of the person. And so that’s been a dramatic change the way that we do business in the hospital.
Alex: And Jason Karlawish, who’s at the university of Pennsylvania, recently argued in, I think it was in stat news, we’ll include a link on the blog posts associated with this podcast. And he argued that caregivers are essential healthcare providers for people who are at risk for delirium, persons with dementia and that they should be allowed in to hospitals in much the same way that hospitals are relaxing these restrictions say for spouses of women giving birth, for example. Thoughts about that because we know as you alluded to, that delirium has tremendous negative consequences for older adults and that you could see some of your patients who with a caregiver present, for a large persons of the day might get through a hospitalization. Not making it through that hospitalization without that caregiver.
Audrey: Yeah, I mean I can see it both ways. As we have been trying to conserve and preserve our protective equipment, having yet more bodies in there, even if they are essential. And doing something that’s really important may mean that down the road or a week from now, we don’t have the equipment that we need for someone who needs to be protected. We may not have that available. And so it’s hard to separate out the bigger needs of how we need to take care of our entire population. And I think that’s where it’s hit us the hardest is, we think of the person and the individual and we know their stories and everything that we want to do to try to preserve that. And we also have to think about our larger community and where do we draw that line. I think it’s a challenge every day. That’s exactly what we’re struggling with in thinking about the care that we’re providing.
Eric: Sheila, I’m wondering from your perspective, you don’t have to answer this if you don’t want. What’s been the hardest part about this for you?
Sheila: The hardest part is that I’ve been in the clinic for a long time and I know these patients very well and they know me very well. And to see them at such risk is very difficult. And just the resources sometimes aren’t there for them. And for something as basic as food, if a vendor for Meals on Wheels gets sick, then we have to wait for volunteers to come and deliver the food. And of course I mentioned the home health aides. So, I get concerned.
Alex: Yeah. And I wonder as this drags on and more providers or Meals on Wheels delivery people get sick. I worry about the basic needs of our most vulnerable older adults.
Sheila: Luckily there is an incredible spirit of people who volunteer now. I mean they’re really coming out. There’s an organization called Invisible Hands where a bunch of 20 somethings got together and they go shopping for older people in their neighborhood and they leave the receipt and the change and the food at the door. It’s incredible. And other people have taken over the Meals on Wheels venues and they go out themselves and deliver it. So there are a lot of kind people in this world. That’s very heartening about this whole event. There’s goodness out there.
Eric: Even in New York.
Audrey: Especially in New York.
Alex: Especially in New York.
Audrey: Yeah. I think the characteristics that created such a high number of people who were infected that were jammed and close together and things can spread very rapidly also is how we are getting through. This because there’s a huge resource of people and creativity in trying to think through problem solving within the community and it’s great to see during a really difficult time.
Eric: Yeah. And I was joking about New York. It really is amazing when New York comes together, I was there, not during a pandemic but during the great blackout. And I something about those three days, just being in that city, trying to get to a hospital in Queens from Manhattan. The ingenuity, how people come together and how neighbors come together was just amazing. Audrey, what’s been the hardest part for you for this?
Audrey: I think it’s not knowing how long this is going to go on. So I worry about sustainability of our workforce, of my colleagues, about as a community. Because like I kind of feel like if we knew that the end date was on 1.5 weeks from now, we’d get through it. We figure it all out, but it could be a really long time. And I think that unknown is the thing that is hardest for me because, especially for those of us who like to plan and like everything organized and to do that in a very controlled sort of way, it’s really difficult.
Audrey: And especially trying to make sure that people still stay well themselves, because I think everyone wants to chip in and they want to work, they’re working very hard. But there’s a limit to how long you can go at that pace. And so trying to make sure that we are mindful of each other and taking care of each other and not going at that pace indefinitely. But we just don’t know exactly how long it’s going to last. The hardest for me, yeah.
Eric: Any other kind of lessons learned things that we should be doing proactively from your perspective?
Audrey: Yeah, I think it’s what we’ve touched on. Obviously, having those conversations with your patients and families before, is always helpful because then you have something to go back to if and when it becomes urgent and not being afraid to have those conversations. Because overwhelmingly, I’ve found that patients and families want to have that conversations because it actually helps decrease anxiety and fear when there’s a plan for what to do if things change.
Audrey: And just kind of practically speaking, preparing for it yourselves to try to do everything remotely in creative ways and recognizing you’re not going to be prepared. There will always be something else that you didn’t think of and that needs to be adjusted in a different way, and that’s okay. We figure out ways to do it. It can be a frustrating, it can be frightening and people figure it out. We figure it out. And so you will too. You’ll learn from our mistakes. You’ll learn from our experiences and you will get through it. Hopefully you don’t have to go through it in quite the same way, but if it happens, you will get through it too.
Eric: Well, I want to thank both of you for joining us today. All of our thoughts are with you guys right now.
Alex: Thank you Audrey, thank you Sheila. Really appreciate it.
Eric: Before we end Alex, do you want to give us a little bit more of, it’s a very, very mad world.
Alex: Little bit more.
Alex: [singing] Children waiting for the day they feel good. Happy birthday, happy birthday. Made to feel the way that every child should. Sit and listen, sit and listen. Went to school and I was very nervous. No one knew me, no one knew me. Hello teacher, tell me what’s my lesson. Look right through me, look right through me. And I find it kinda funny, I find it kinda sad. The dreams in which I’m dying are the best I’ve ever had. I find it hard to tell you, I find it hard to take. When people run in circles it’s a very, very. Mad world, mad world.
Eric: Thank you Alex. Thank you Audrey and Sheila for being on.
Audrey: Thank you.
Sheila: Thank you.
Eric: Thank you to all of our listeners for joining us and Archstone Foundation for their support. Stay safe everyone.