In our latest series of talking with front line providers in the midst of the COVID pandemic, we talk with Drs. Craig Blinderman, Shunichi Nakagawa, and Ana Berlin of the palliative care service at Columbia University Irving Medical Center. We cover a host of topics, including the urgent need to conduct advance care planning with our outpatients (including Craig’s new Epic dotphrase below, and guide to COVID advance care planning); the need to be flexible to suit shifting demands; to stock up on iPads to engage patients/family members in goals of care discussions from outside the room. We mention the new JAMA papers on “informed assent” to DNR/I orders by Randy Curtis and colleagues (and Craig’s prior JAMA paper), and on rationing scarce resources by Doug White and Bernie Lo (see also our prior podcast on rationing with Doug with links to the practical framework).
I cried after this one.
Maybe it was Ana talking about how hard it was have an agenda when discussing goals of care with the family of a 90 year old woman with dementia. We’re taught in palliative care to match patient/family goals, and to not bring an agenda. But we do have an agenda now, as Ana says. The patient will not survive a code or prolonged intubation. Coding her would expose Ana’s colleagues to COVID, and use scarce PPE and ICU resources, including a ventilator. We can’t check that agenda at the door anymore. This is hard. You can hear their moral distress as they talk through these experiences.
Maybe it was the three of them talking about the pace of change. Last week they felt “impotent” as they awaited the coming storm. Then the ICU called; they want palliative care. Then the ED called; they want palliative care. Today Shunichi spent the entire day having goals of care conversations with likely COVID patients and their families in the crowded ED. Today they say they want a new inpatient palliative care service, ASAP, maybe even tomorrow. They thought they would have until next week. The tsunami hit Wednesday.
Maybe it was Ana saying her daughter had a fever and might have COVID, and that one thing she is thankful for is that kids are spared serious illness.
Maybe it was the song choice, the Ghost of Tom Joad by Bruce Springsteen, with its inspirational and haunting message. Craig says he chose this song because the lyrics are about standing up to meet the challenges faced by the most vulnerable. As he notes, COVID is the AIDS crisis of our day. We’re all in this together.
“Now Tom said “Mom, wherever there’s a cop beatin’ a guy
Wherever a hungry newborn baby cries
Where there’s a fight ‘gainst the blood and hatred in the air
Look for me Mom I’ll be there
Wherever there’s somebody fightin’ for a place to stand
Or decent job or a helpin’ hand
Wherever somebody’s strugglin’ to be free
Look in their eyes Mom you’ll see me.”
Well the highway is alive tonight
But nobody’s kiddin’ nobody about where it goes
I’m sittin’ down here in the campfire light
With the ghost of old Tom Joad
Craig Blinderman’s new Epic dotphrase for COVID-specific advance care planning:
Advance Care Planning in the setting of COVID pandemic:
Discussed the serious risks to elderly and chronically ill patients who become infected with COVID-19.
Patient expressed understanding that his/her likelihood of survival given age and chronic medical conditions is low.
Advance care planning was discussed to include patient’s wishes regarding resuscitation and intubation.
Patient understands the risks to his/her health if he/she should become infected or have serious symptoms.
In considering the tradeoffs of being isolated from family, the low likelihood of recovery, patient would prefer to stay at home rather than go to the hospital if signs and symptoms of COVID infection develops or patient becomes acutely ill.
If patient were to decompensate and need symptom relief, he/she elects to have hospice services arranged or appropriate comfort measures at home, e.g. morphine, lorazepam, haloperidol.
MOLST (POLST in some states) form reviewed. Patient is DNR/DNI, focus on comfort measures, no transfer to the hospital.
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex. It is right now Friday the 27th of March and we’ve invited some colleagues from New York City to join us right now. Do you want to tell everybody who’s on the line with us?
Alex: Sure. I’d like to welcome three people from Columbia University Irving Medical Center to the GeriPal Podcast. The first is Shunichi Nakagawa who’s assistant professor of medicine and director of the inpatient palliative care service. Welcome to the GeriPal Podcast.
Shunichi: Thank you.
Alex: And the second is Ana Berlin, who’s assistant professor in the department of surgery and adult palliative medicine. Welcome to the GeriPal Podcast Ana.
Ana: Thank you. Good to be here.
Alex: And last, but definitely not least is my old pal from palliative care fellowship back in Boston back in the day, Craig Blinderman who is now director of the adult palliative care service at Columbia University Irving Medical Center. Welcome to the GeriPal podcast.
Craig: Hey guys, great to be here.
Eric: So we’re going to be talking about your experience right now in New York City, a current epicenter for the outbreak that we’re having with Coronavirus. Over 25,000 cases in New York City right now. Hard topic to talk about. Maybe we can just lighten the mood a little bit. Do you have a song request for Alex?
Craig: Actually I do and it may actually touch the moment that we’re actually in right now. Ghost of Tom Joad originally by Bruce Springsteen.
Alex: All right. (singing)
Eric: Thank you, Alex. Craig, why did you pick that song?
Craig: For me, it speaks to the moment that we’re actually in. It’s a hard song about struggle, and when people are really down, homelessness, really being marginalized. I don’t think we’re necessarily that far from it. I mean, there are things that are happening. I think we’re just seeing from a societal standpoint the impact that this is going to have and especially for the most vulnerable. We haven’t even really started to see the impact this is going to have in prison systems and the homeless population and others, which I think is going to really be shocking. And so for me, that song sort of brings us into this world of what’s happening on the ground. And then in the last verse, of course, we didn’t get to hear, but really about how we are all these people, right? We’re the people that are fighting in the front lines, we are the people that are fighting for a change. You look at those eyes and you’ll see us. That’s really a sense that we’re all in this together and that there’s a sense in which we can’t really separate any longer.
Eric: Maybe we can start off with kind of what are the things like on the front lines right now, especially right now in New York?
Craig: Yeah. Well, I mean I’m seeing it from the perspective of how do we as a service that’s responsible for outpatients, that’s responsible for fellows training, and that’s responsible for providing services in their hospital, how do we respond when the numbers are just starting to become clear or starting to become more visible in terms of the magnitude of our work? And we’re a relatively small service in the grand scheme of things, relative to other large academic hospitals. We are a small service of about five attending physicians that are doing both inpatient and outpatient work with nurse practitioners, social workers and others. But we’re a very small service.
Craig: And so how do we think about reacting to something that’s a magnitude that even if we were a large service would be really difficult. And so thinking of us as a scarce resource, and thinking how do we deploy, and how do we think about using the relationships that have been developed over time, using resources, not reinventing the wheel, trying to operationalize things as quickly as possible and responding to what’s changing every moment. I think one of the lessons here if you think of New York as being a couple of weeks ahead of what the rest of the country may be going through, certainly one of the things is, obviously, try to plan as well as you can, but to also recognize that there’s a sense in which we just don’t know what’s going to happen tomorrow, right? That there’s things that are changing so rapidly that we are trying to respond to it in a way that can be efficient.
Craig: So to give an example, just yesterday, within 24 hours, we were talking hypothetically about starting a palliative care unit, which we currently don’t have. And doing it out of necessity, given the large volume of individuals in the ICU and the emergency department that are either dying from COVID related infection or from other serious illnesses and needing the beds, and hitting a point where we’re very close to not having a single ICU bed whatsoever. And so thinking how do we move those patients out of the ICU, out of the emergency departments and get them into a space where we can take care of them. And so this was something that we had talked about over a year, even two years ago with hospital administration about the possibility of a geographic unit, a palliative care unit, maybe with hospice beds and so on.
Craig: And thinking about the risks, the benefits of it, the financial plan of it. And within 24 hours, it’s literally coming together as an actual thing that we’re going to have to staff with a very small number of people. And so it’s that kind of just humility and recognizing that in the face of something that we’ve never really seen before how do we respond to this challenge, how do we mobilize our scarce resources in a way that can be as effective as possible and not getting too behind the eight ball as it were. And so that’s I think a big part of it. And then there’s of course the team morale and just making sure, given that we are stretched really thin, how do we do this? This is not like 9/11. Right? It’s not like you have a disaster, you roll up your sleeves, you get busy, you get over it, and then you kind of do the morning and you go back to your normal life.
Craig: This could go on for months. And so how do you sustain yourself spiritually, emotionally to do this for months? Right? And that’s I think the piece that we’re just starting to think about. That it’s not like another disaster, it’s not like a hurricane hit and you just kind of deal with the disaster ahead of time and you have a peak and you have a drop off point. We don’t know exactly what the peak is going to look like and when it’s going to occur. We have some ideas, but it’s still unclear. Right?
Eric: I think that uncertainty is so hard. I mean uncertainty is so hard to grapple with in any circumstance in this in particular. And for a lot of us, the uncertainty is waiting for that shoe to drop. I really liked there was a great BMJ palliative care article that the quote was, “The tide goes out before the tsunami hits.” That’s where we are at the moment.
Eric: And it certainly feels like that right now here in San Francisco. I’m wondering, going to the inpatient side, what does that look like right now?
Alex: Sounds like, Shunichi, you and Ana have sort of divvied up in the emergency department, one person’s on the floor, is that right?
Alex: Yes. So maybe, Shunichi, you want to tell us what you’re doing now and what your day is like.
Shunichi: So, like Craig said, our team structure has been changing very quickly over the last, I think, one week or two. I think last two weeks we were told from the hospital that we have to work remotely as much as we can. We should limit the clinicians coming into the hospital. Before we had a ICU team, and the floor team, and then two teams working and helping 40 to 50 patients. But they deployed the team, a couple of the MD and a couple of nurse practitioners are staying at home and then try to help the clinicians onsite remotely. And then we started that plan Monday. I think Monday, Tuesday, Wednesday we were kind of quiet when the elective surgery or the elective procedure was held.
Shunichi: I thought it was the kind of quiet before the storm. I thought the storm was coming in a week or two, but I was wrong. I think storm was already here, especially Wednesday, Thursday, Friday Ana reached out to the ICU team and ICU team said that we need your help before people get intubated. We need to go to have a goals of care conversation.
Alex: Goals of Care conversations.
Shunichi: Correct. So we started to depo the team. I think Ana worked on that yesterday and today. And then yesterday we got a call from the emergency room team that we need palliative care expertise in the emergency room. So today I started working in the emergency room with one of the fellows. So this past five days, it changed dramatically.
Alex: Dramatic change in one week and change coming down the pike, as Craig said, there’s going to be a new palliative care unit and you only have a limited number of staff people, but Shunichi could you paint a picture for us. What’s it like in the emergency department at Columbia now?
Shunichi: I used to visit in the emergency room before, but only occasionally. Now, today I went there like 10:00 AM in the morning and I was there until half an hour ago. There are lots of patients and many people – the clinicians were very overwhelmed. I asked a couple of people, “How are you doing?” One, I think PA told me, “I just came here a couple of days ago.” So everybody was I think very, very overwhelmed.
Alex: Yeah. And what kind of work did you do in the emergency department?
Shunichi: So today we got I think a total of five, 10 seconds from the emergency room. I think all of them are COVID positive. 80, 85, 87, also 91 was a female who was diagnosed with COVID. The families are not here obviously. So they want to ask their health goals of care conversation.
Alex: Did you talk with the patient?
Shunichi: I saw three of them today. One was able to talk. So I spoke with him and then two I think had dementia, so cannot give us any story. So I called the family over the phone.
Alex: Ana, I want to bring you in. Tell us about what you’re doing on the floor and what you’ve been doing these past two days. What’s this been like for you?
Ana: Yeah. As I’ve been listening to Craig and Shunichi, I’ve been reflecting on the last couple of weeks and maybe even two and a half weeks. And if you’ll indulge me, maybe for those who are in places across this country where we were two and a half weeks ago, it might be helpful to have me just walk through what that journey has felt like.
Alex: That’ll be great.
Ana: So I split my time between surgery and palliative care. And at the end of the week before last, I was finishing up a month long period of time as an acute care surgeon. And we had a handful, I’m talking about one to five COVID positive patients at each of our system hospitals, when I finished up my surgical service the week before last. Last week, I started up on palliative care on Monday and I had to go back through my calendar to verify this because time has flown at work speed over the past couple of weeks.
Ana: And some of the things that Craig has been talking about, I’m scratching my head and like, “Wait, was that two days ago?” So Monday of last week, I started up on pal care and it was a really alarming feeling of impotence that I think I and possibly all of us felt as we waited for the storm to hit like Shunichi said it. There was this feeling like this was the calm before the storm. And I started to get really antsy in the middle of the week and I started to nag Craig to say, “Listen, we need to reach out to the emergency room. We need to do more in the ICU.” I was really starting to get nervous about the sort of position that we might be in a week from that time.
Ana: And on Wednesday of last week, I listened in to a call that Zach Sanger had organized where a lot of participants from Washington state called in sort of a Palli-COVID call that I think you guys had advertised on GeriPal. And that was sort of eye opening and it was a preview of issues that I had never considered like how would we handle a situation where we still have visitors coming into the hospital to say goodbye to a loved one who’s dying of COVID, but there is no PPE. So the visitors have to say goodbye through the window.
Ana: I hadn’t thought through those issues. It seems naive to me now, but I hadn’t thought through those issues until that webinar or whatever, Zoom call. And from that call onward, I think there was a big push to figure out how we could help and the early efforts at figuring that out involved reaching out to our service colleagues, head chiefs of service, and reiterating that palliative care is here for you and offering our support. And not a whole lot changed until early this week.
Ana: I think the take home lesson for me from doing sort of outreach that still put the onus on the consulting services to ask us to get involved, my take away now is that they’re very overwhelmed and they need us to proactively go to them and help them by us actually scavenging the cases that need our help. I’ve said this, in arguing for an inpatient palliative care unit in a time of crisis like this, as I have just at our baseline, it’s one thing to be able to offer to a patient or a family member sort of a change in paradigm and the care that they’re receiving in C2. It’s another thing to be able to say, “I have a special place for you filled with dedicated professionals who are experts in what you need most right now, which is symptom management and support. And we’re going to actively offer this to you in a specialized location under specialized framework.”
Ana: So, kind of thinking about that, on Monday we had the privilege of being invited to a ICU faculty check-in where we heard for the first time firsthand from these ICU colleagues, the sorts of distress that they’re under dealing with large numbers of COVID patients about a doubling every three days is what we’ve seen this week. The rate can change, will change. But just really, really distressing conversations about similar issues that had come up on that Wednesday Palli-COVID call. Lack of PPE, visitor policy, family distress in view of this evolving visitor policy, how are COVID positive patients different from non COVID patients? And again, this feeling of dread that while we were still kind of okay in the beginning of the week, there was still capacity in critical care, the hospital did a great job of sort of emptying out ahead of this storm.
Ana: But now things are really already at capacity and my sense is that we’re nowhere near surge levels. So my advice to anyone who’s listening to that journey, I felt last week that there is a tsunami coming and the tide goes out before it comes in. And while the tide is out, you one of two choices. You can get a really good nose clip to hold your nose and go under the wave when it comes or you can find yourself a really good surfboard to climb up on and really try to ride the wave and do something novel and excellent that’s never been done before.
Ana: And to me that surfboard consists of a great team of people, transparent communication, thinking outside the box reaching out to colleagues at other places. UW shared their palliative care framework with us and thinking about like, “How do you scale from normal to high demand to really surge levels? How do you begin to think while the tide is out about how you’re going to staff these different scenarios? This sort of outreach you’re going to do.” Because it was a very awkward time last week where the kids are home from school and you’re trying to figure out homeschooling and it’s kind of nice because you can work from home half the week because we’re on reserve, we’re trying to conserve resources, but at the same time there’s this feeling of impotence while you’re waiting for what’s going to happen outside of your control. I don’t know. I hope that was a little bit of a helpful walkthrough.
Eric: And it was. I mean first of all, it feels heartbreaking right now kind of what you guys are going through. And I also feel right now like this desire to do something, you see it coming your way and you feel like I got to do something and it’s overwhelming sometimes.
Eric: How do you think about planning right now? Because a lot of what we’re doing is just trying to get as many plans is in place, but Craig, like you said, the plans will change. How should our teams think about this?
Craig: Yeah. Yeah. So this is the hardest piece, right? Because we’re very limited in terms of our staffing and our resources. And you can’t just create palliative care clinicians out of thin air, right? We have four fellows. We can certainly deputize them to be taking on…
Ana: …and that the four fellows are shared with another institution.
Craig: That’s right. Right. They’re shared with our Cornell Campus. It’s part of NYP. Right? So we’re very limited in terms of having specialists on the ground. And you just can’t create people. We have champions if throughout the institution. So we can certainly tap them to be of assistance in providing some more general and primary type of palliative care work and doing some work with patients there. But I think in terms of having a unit, having a liaison relationship with a step down folks in the ICU triage team and having a unit and having a team being in the emergency department, that’s it. We’re done. So in terms of how do you plan for more than that, it’s only if you can create more bodies. And then the piece about, “Well, okay, so who else can be helpful?” Right? Oncology, you’d presumably think that they’re like our cousins. We can bring them into the fold. Oncology PAs do a lot of pain and symptom management. They should be able to handle working with dying patients. It’s not that simple.
Craig: We have to negotiate within our own division, within the department and to figure out how are we going to actually get providers to be covering overnight, to be managing dying patients in the unit. Right now it could be nine bed unit, but I mean easily we could be overwhelmed within a day or so and have to expand further. So then you have to double your staff and how do you double your staff when you don’t have staff to double.
Eric: So you also do outpatient palliative care, right?
Craig: And so then we have all these patients and that’s what I was doing all day long today. Right? Half of my time today was really being very clear, certainly with my older patients and those that are seriously ill. I have some chronic pain patients that are maybe not quite as ill. But certainly with our seriously ill patients. I mean right up front we need to be very … like created a … what do they call it? A smart phrase, an epic today that just very much highlights a COVID-19 specific advanced care planning kind of conversation on making sure that we’re prepared if patients really don’t want to go to the hospital, and likely die alone, and not see the family again. I mean that’s really what’s at stake here. It’s not the old conversation that we were having, “Well, it’s not going to be pleasant. You’ll be in the ICU. It’s going to be hard.”
Craig: There’s the burden. There’s the trade offs. There’s all these things that we can help our patients avoid if they really don’t want to go through that, but they’ll have their family there. They’ll be able to make decisions together presumably. There’s a sense of which that is out the window. That is not happening. So the choice is really, you die in the hospital alone or you take your chances and maybe get through it at home. But if it’s really bad, then there’s morphine, and there’s Ativan, and we’ll try to get as much hospice care quickly to you as possible. But even that’s not likely. Right? So it’s really about how do we match. So we can’t abandon our large outpatients either. We have to be available for them and have nursing support and others who can be able to manage them as they get sick, or as they have questions, or run out of meds or whatever. So when you’re stretched very thin, you start to realize just how much each one of us are actually doing each day. So it’s no wonder why we’re all so exhausted by the time it’s six o’clock in the evening.
Eric: Yeah. And I think there’s so much focus on inpatient and critical care medicine where outpatient is kind of just the stepchild right now, but it’s actually kind of critical to actually manage those outpatients because if we don’t they’re going to be going to the ED.
Craig: That’s exactly right. That’s exactly right. And that’s how I’ve been sort of thinking about this and telling our patients as well. I said, “We can’t afford any more patients. We can’t take any more patients. You have to stay in.” I had a whole conversation with one of my young patients, she’s in her 20s, has a kind of rare neurofibromatosis type of tumor, and she’s chronically ill on, on pain meds, her immune system’s compromised. She has gotten some brain involvement. And her partner is like … Well, he’s a little lax about staying away from people and he went out, he went to visit his son, this and that. I was like, “Dude, no, you cannot do that. There are asymptomatic carriers. If she gets sick, that is it. I can’t guarantee that she’s going to do well even though she’s young.” Right?
Eric: That’s like the conversation we’re all having with our parents right now.
Craig: Yeah. Right. Right, right.
Craig: You can’t do that. We cannot afford another patient in the hospital. And I can imagine how it would play out. I even projected this conversation, I do this … and I’m sure you guys do it as well. We’re always hoping for the best, planning for the worst. I have a very dark imagination. So I always go to those dark places, and imagine the worst case scenario, and then what would that conversation be like in that scenario. And because he was being a little resistant to my public service announcement, I had to go there. That’s the nuclear conversation, right? So I had to go there. I said, “Listen, I don’t want to have this conversation in a couple of weeks where I’m calling you from the ICU saying that your partner is not doing well and this is what’s happening because she got sick because she was doing everything she could do to stay at home. But she got sick. And I don’t want to have that conversation with you.”
Craig: Hopefully that message got through. I had to use a little bit of that to sort of move the needle. But this is a big piece as well, right? We can’t abandon the outpatients for the sake of managing all of the swell of the storm and the inpatient side either.
Eric: I got a couple of questions. First, would you be willing to share that doc phrase of yours and we can post it on our website?
Craig: Yeah, absolutely. Of course.
Eric: Just email it to me. That’d be great. Second, I’m going to start off with maybe, Ana, any suggestions as far as things that you’re doing around symptom management? We’ve heard from our friends in Seattle, elsewhere in New York, thinking of good suggestions like trying to minimize PRNs, more long actings. Cynthia [Pan 00:30:14] talked about starting more folks on fentanyl patches even though dose is something we generally don’t do. So there’s less people coming in and out and less worry about access to morphine right now. Thoughts on your perspective?
Ana: The shortages that we’ve been facing have been mostly IV Sentinel. I mean, we’ve been following sort of CAPSI guidelines and recommending first line for acute symptom management, IV morphine. I haven’t heard anything from pharmacy here about IV morphine shortages. The culture of this institution is pretty centralized around hydromorphone inpatient. And so to me it feels like at least a conservative move to encourage preferential use of morphine over hydromorphone. I don’t have a good experience set with Sentinel patches in the hospital. I find them incredibly error prone in terms of dosage, in terms of them getting not put on and taken off properly. But I think Cynthia’s suggestion makes a lot of sense when you’re-
Eric: Yeah. It was a lot about conservation of PPE, trying to avoid people coming in and out.
Craig: Or a PCA where you can just leave it in there and you just have to check it once a shift and not have to go in and give bolus doses if patients are able to do that.
Eric: That’s a great point.
Alex: Shunichi, any recommendations as far as symptom management from your perspective?
Shunichi: Fortunately or unfortunately, I haven’t had a chance to take care of the patient with COVID who is at end of life yet. So my involvement has been mainly in the ICU and the emergency room about the goals of care conversation.
Alex: And so then maybe for you Shunichi, you talked before about how you had a goals of care conversation with family member of this woman in her 90s who had dementia. And I wonder if you could say something, not maybe specific to this patient, but in general, what are you telling family members or patients about their prognosis and about what the likely courses in order to conceptualize these goals of care conversations?
Shunichi: Yeah, I think it’s extremely difficult. It’s extremely difficult. I think for a couple of reasons. One is that we were not aware of how bad this was like two weeks ago. I think even among the epicenter of New York, I think the people might not be aware, might not realize how bad this is. And then also in patient, a family can’t be here. We have to talk over the phone. So it happened very quickly and they are not here at the bedside. So I think family is having a lot of difficulty realizing how bad this is. Although the lady with the underlying dementia had the COVID and then not able to breathe, so to us it’s kind of very straightforward. We should be able to clarify the goals of care relatively with less difficulty. But it is not the case.
Shunichi: I think they, the families, were asking us why is my loved one getting worse so quickly. She was doing better, and then all of a sudden, we go to the hospital and then get worse. So are you guys doing anything wrong? So it’s a lot of … how do I say? Difficulty realizing the situation. So it’s very difficult. That’s my experience in the emergency room today.
Craig: Plus one of just … If I could just insert one thing. One of those … our social workers are also noting that unlike in normal situations where family members can come into the hospital and see their loved ones, talk to the doctors, the issue of trust is really, really important, right? You have all of a sudden now Shunichi is on a phone call with a family member and they can’t see him. They can’t see their loved one, and they’re trusting everything this person is saying to them or they or not. Right? And so how do you build trust, how do you build rapport in a circumstances when you don’t have the face to face? You don’t have a lot of the nonverbal communication skills that we’re employing. You don’t have a lot of the tenderness that can come up in family meetings. It’s really a new order. Right? How do we do this?
Alex: Yeah. I want to bring in as well, there was a fantastic paper, came out in JAMA today. It’s a perspective or I guess they call them viewpoints by Randy Curtis and colleagues at the University of Washington talking about the need for advanced care planning, which you spoke to eloquently just a moment ago, Craig, in the outpatient setting. And in the inpatient setting, having goals of care conversation. Start with goals and then move to uninformed assent process for patients for whom it’s not about life at all costs, but if there are patients for whom they have underlying serious illness or they’re at risk for high mortality rate in the hospital that we moved to an informed assent process around code status discussions. And Craig, I know this is something that you wrote about several years ago, I believe also, in JAMA.
Alex: But now like you say, things are moving at warp speed and hospitals are starting to do this. I’m wondering if you’re changing the way that you have these conversations with patients now based on the Coronavirus epidemic to be more in line with what you proposed. I don’t know what that was 15 years ago or something like that.
Craig: Yeah. Yeah, I know Randy has always been a big fan of informed assent. I think it certainly makes sense ethically and certainly in these situations to be using something along those lines. There’s even another piece here too, which almost feels like we have to be really careful, I think, as a field in how we engage because really we’re supposed to be agnostic as terms of outcomes, right? That in terms of what the ideal goals of care conversation should ultimately be aligning patient’s deeply held beliefs, and values, and goals for themselves in the future with what’s actually available and possible to deliver to them to improve their lives and their quality of life in some way.
Craig: And here in this setting, we’re sort of starting at a point where, and I’m curious to hear from Shunichi how this went, the goal is don’t bring them into the ICU. Right? We’re already starting with an endpoint. That’s almost where we want to get to. That’s the goal. It’s our goal. It’s our agenda. And then you have this poor elderly person who just wants to survive, or doesn’t understand what’s happening, or a family that’s unclear as to how this could happen so fast. But our goal is to take them to the point of actually we’re not going to be performing CPR. We’re not going to be taking him to the ICU because we don’t think things are going to change. We’re going to do everything we can to make sure he’s comfortable in a kind of informed assent model. But that is very different than how we normally do things by exploring because what if we find out that they do want to have everything?
Craig: And we have a lot of patients that come through our doors and that’s where we end up. And then the patients stay on in the ICU for weeks on end. So there’s that piece. And then simultaneously with all of this, and I think we have to think about the context is there’s also a debate within how do we implement triage guidelines that have been proposed, but here in New York by New York state task force on life in the law or the Hasting Center recently released, or there’s some other guidelines that have been coming out, numerous guidelines that have been coming out from different States in terms of doing that. And you can imagine on the societal level, and it’s already happening.
Craig: I think if you have disparity among hospitals in one state in terms of how they operationalize resource allocation, you can already imagine like, “No, no, don’t go to Columbia. They don’t give you vents or they’ll give you a couple events for two patients per vent, so you’ve got to go somewhere else.” Right? “Or don’t go to this state because they have a death panel there. They don’t let anybody get into the ICU who’s over 80. You’re over 80, don’t go there.” Right? You can already imagine the way this could roll out, and so we haven’t fully adopted … well we’re actually not at the point where at zero capacity for any more beds. But once we get to that point when there is these life and death decisions, is it just purely going to be sofa scores and age criteria? Are we going to have other ways of prioritizing for healthcare workers? And if so, how much? Is it going to be uniform around the state, around the country? Or are you going to see disparities, pockets of different places in different States that have non uniform ways of implementing this?
Craig: Is there going to be liability on the part of the commissions if you diverge from state law? And here in New York state it’s very restrictive. I don’t think Governor Cuomo’s order the other day was clear enough in terms of really giving protection to hospitals to really do everything they can, not just to treat, but to know when to stop treating. And I don’t think we have enough assurance from the governor’s office or the state legislature that we can do that and implement these ethical guidelines in a way without any kind of legal liability and certainly without the societal pushback.
Eric: And I think the interesting point too is what’s the role of the palliative care team? Is that there should be this buffer between the team that is making the triage decision and the clinical team and the palliative care team. So, A, it provides a little bit less distress for those team, but for palliative teams also, so it’s not considered a death squad. So that’s something that we’re here making sure that we’re trying to do locally, is making sure that there is that buffer where the palliative care team is not going to become triage team. But it brings up all of these questions and I’m just also thinking … I think there was a big hububabu about Henry Ford Hospital and their triage plan and the backlash that came out against that, and the anger.
Alex: Yeah. I just want to note that there was another publication today by Doug White and Bernie Lowe about their proposed framework for triage and rationing that we covered on our podcast with Doug White last week and he sort of previewed. There’s also a podcast associated with that on JAMA that has no music, so not as good as the one we did with Doug. Ana, you look like you wanted to jump in when we were talking about these conversations and the idea of a formed assent, in other words, informing somebody that because of your mother’s goals, there’s something that we might do for some other patients we wouldn’t do for her in that CPR, something like that. So taking the onus off of the family member to make the decision or the patient and putting the responsibility on ourselves and looking for them to agree or disagree with that decision. Ana, you look like you had something to say.
Ana: I mean, honestly, I tried that today and N equals one, right? I don’t know how much stock to put in this one story that’s occupied 60% of my day. But it sounds like the same patients Shunichi has in the emergency room, minus 90 for dementia and COVID. And she’s been on and off and on rebreather for three days. Today what changed? So I established contact with the family yesterday. We got involved yesterday and I spent my day sort of building rapport and trust with this family who’s off site. And a big part of that was so if anyone in any one palliative care program is sitting around now wondering what they can do to prepare, get your hands on a couple of iPads because honestly the unit patient care director had this hospital iPad or I could call the patient’s granddaughter, her decision maker, and have sort of a face to face video visit with the grandmother who was mentally responsive, sort of nonverbal all day yesterday.
Ana: And really she lit up when she saw and heard her granddaughter on the iPad. They were able to say, “I love you and I forgive you.” And I could find all the wonderful things that I saw would help the daughter come to terms a DNR/DNI decision. And she held off yesterday. I didn’t want to push it. I thought for sure … And this is where, like you said, it feels terrible to have an agenda. We’re not supposed to have an agenda, but I really need to keep this 94-year-old woman with COVID, and today probably COVID cardiomyopathy, off of the ventilator and out of the ICU. And there’s no ICU bed to offer her today. And the reason I was eight minutes late is I’m trying to get her comfortable. Her stats are all over the place. She’s on and off and on rebreather. She sort of delirious.
Ana: The goal is to get her home to her functional baseline. But the granddaughter keeps perseverating on things that this patient said when other family members were ill and at the end of life. And the patient had always said, “If it were me, I’d want them to try everything.” And so I keep reframing around, “We’re doing everything that will help. And I don’t want to put her through a harmful procedure that will not increase her likelihood of surviving or getting home, which is the goal.” I’ve made strong recommendations and they really don’t want to allow her to not have a trial of intubation.
Ana: It’s almost a moot point. It’s almost a moot point because I don’t even have a place for her to go to. If we rapid her now on the floor, there’s not a place to bring her to and I’m going to be exposing the whole co-team who intubates her, the nurses are who are going to then have to come in and out of the room with a different level of PPE if she’s…
Eric: It feels like for me a lot of these decisions this is where like a framework for resource allocation could really be helpful.
Eric: …Because I can feel the moral distress that you’re having over this and then every provider goes through this by a case by case basis. And then there is this potential for a lot of bias to be introduced and a lot of other issues rather than going to the framework. And I just feel for the distress that you’re having.
Ana: As the daughter keeps saying, “I don’t want it to be because she’s 94.” And honestly it really is about this … even in a perfect world, the intervention they’re asking for, it doesn’t meet the goal. It does not meet the goal, but they’re adhering to this need to go there, I think in part, because of the lack of trust, and the lack of direct experience, and the lack of being able to be here and hold her hand and say goodbye. So the situation is really informing that disconnect.
Eric: Yeah. I’m wondering if I could just ask you and feel free to not answer this. We’ve asked this of past people we’ve interviewed. With all of these things that you’re holding on to yourself, this distress that you’re having, what’s it like to go home right now?
Eric: Is there a concern? You’re seeing these COVID patients, you’re…
Ana: My daughter had a fever on Wednesday and I came to work. I had presumed she may have COVID. She’s been fine ever since. I have to say it really helps that with this disease, we largely don’t have to worry about our kids.
Eric: How about for you, Shunichi?
Shunichi: I mean, until yesterday I was not in the same room with a COVID patient, so I was not so concerned. I take all the precautions I’m supposed to take. But today I saw two or three in the emergency room. That’s why I’m wearing the scrubs. This is like a first in the many, many years. So today I’m a little bit concerned that I have to change and then should I … my wife and my son. Maybe I should do the social distance at home. So I’m new to the concern. I’m a bit uncomfortable going home now.
Eric: Yeah. And Craig, any last thoughts from your perspective? I realize that we’re taking up a whole lot of your time, so I appreciate all three of you for joining us on this call.
Craig: Thank you. Yeah, I mean I think that really, really it’s about how do we show up for each for this moment. There was an AIDS crisis in the ’80s, that what was at stake was human dignity and suffering and people rose to the occasion and changed the political landscape, the healthcare system, palliative care actually in some sense really came of age there. And a lot of people that went through that crisis are now directing palliative care programs or have been instrumental in bringing that wisdom to the field. So I think this is another kind of moment where we have to adapt to something that we don’t normally work with in our setting and figure out how we can be most useful. And then also just take that check in with ourselves, knowing that thyself, right? And where are we at in all of this? How do we show up each moment? How do we go from the next moment to the next moment?
Craig: There’s this really wonderful Buddhist story that someone shared with me recently. It’s from The Blue Cliff Records. It’s like a list of all their cons. And it’s this a story where a Zen student asks his master something like, “I want to learn more about enlightenment or something like that.” It’s always these questions where the student kind of tries to trick the master. The headmaster says something like, “Well, did you eat your rice?” And he said, “Yes, I finished my rice.” And he said, “Well, did you clean your bowl?” And that’s how it ends. Right? And the lesson in that is you’re going from one moment to the next one. First, I’m meeting my rice, and then I’m cleaning my bowl, and then I’m going to go to something else. Right? It’s not like I’m eating my rice and I’m thinking about cleaning the bowl. And so how do we react? Moment to moment to moment.
Craig: So right now my next moment is going to be having virtual limoncello shots with [Mahir Camden 00:52:21]. Right? That’s my next moment. But I’m not thinking about it right at every single second of the day. Right? But that’ll be the next moment. And then after that, and then an email. So for me it’s really about how can we show up in each moment and be flexible and responsive to what is that we can be helpful with given our skills, and given our training, and where we’ve come from as a field.
Eric: Again, I want to thank all three of you. And maybe for this moment, Alex, can you give us a little bit more of that song?
Alex: Let me just also express my thanks to three of you, Shunichi, Craig, Ana – really appreciate you joining GeriPal podcast. I’m sure many of our listeners can express their appreciation too for taking this time. Here’s a little bit more of Ghost of Tom Joad. (singing)
Eric: And with that, thank you all again for joining us. Thank you to all of our listeners for everything that you’re doing right now during this pandemic. Thank you to The Archstone Foundation for supporting the GeriPal Podcast. And with that goodnight everybody.
Alex: Thank you Craig, thank you Shunichi, and thank you Ana. Take care.