In the war on COVID-19, doctors face an enemy like no other – mysterious, invisible, and medically confounding. Dr. Laura Kolbe, co-founder of the COVID+ Hospice and Palliative Care Unit at Weill Cornell Medicine/New York-Presbyterian explains a new first-hour emergency room protocol. We learn how the palliative care team allays suffering, comforts the sick, and clarifies the final wishes of the most desperately ill and dying patients.
Dr. Stieg: During this very difficult COVID crisis, our frontline doctors, nurses and specialists are doing heroic work and caring for patients who arrive at ERs in various stages of medical and psychological distress at the epicenter in New York City, new protocols in comprehensive patient care are emerging due to the ever increasing demands of this terrible virus. A warm welcome to Dr. Laura Kolbe, a hospitalist and instructor in medicine at Weill Cornell Medical College, Laura co-founded and recently launched Weill Cornell’s COVID positive hospice and palliative care unit. I’m especially grateful that she could break away from the front lines to tell us more about how her unit is helping COVID patients get the comprehensive optimal medical care they most need. Laura, welcome.
Dr. Kolbe: Thank you so much, Dr. Stieg.
Dr. Stieg: I’m interested in this one hour protocol that you’ve instituted. Is that something that you used down in the emergency department or is that something that you enact once a patient is moved into your unit?
Dr. Kolbe: So what you’re referring to is our hospital wide effort to ensure that we can really delve into a patient’s goals of care and deliver clear prognostic information to that patient within the first hour of their arrival within the hospital. And I think this was for a few reasons. I think for one thing, even our master clinicians with really advanced clinical acumen were sometimes surprised by the disease course of COVID-19. We sometimes see patients who look relatively well when they first arrive in the emergency department and very quickly can develop really alarming signs of respiratory distress. And so some of the clinical signs and symptoms that we might normally use to decide who we’re kind of acutely or more urgently worried about and who we think is going to be relatively stable, some of those things were not performing as optimally as we wished they had. We realized that it was important to identify it very quickly what patient’s values, beliefs, and priorities were with regard to their health in case that patient were unfortunately to have a clinical deterioration and no longer be able to communicate that to us. And so our goal throughout the hospital is that within the first hour of encountering a patient that we have that conversation about their goals of care.
Dr. Stieg: Do you think as a result of the consequences of COVID, one of the unintended consequences, and I would view this as a positive outcome, is that we’re going to be applying palliative care modalities more broadly across all emergency room admissions?
Dr. Kolbe: I think that is such an excellent point and I think I would even add that we might want to look even further upstream than that. And I think in the ideal world we would in a society where we all feel comfortable and empowered to have conversations with our primary care doctors and with our loved ones about what those values and priorities and beliefs are as they pertain to our health. I think currently this doesn’t happen as much as it should in part because of social and cultural taboos that we might have around sickness and death. Partly because we’re simply not used to having these conversations. And partly because there are all kinds of competing priorities that keep primary care doctors very busy. And so I think one really wonderful thing that we could get out of this pandemic is a commitment as a society to use our time and our wisdom in the outpatient setting and even in our general conversations with family to make sure that our loved ones know what our beliefs are and what our healthcare priorities are. But then I absolutely agree that that carries over into the emergency department setting as well and that it would be a wonderful thing to come out of this experience if it became a very clear part of the work of any patient admission that we have these detailed, rich, descriptive conversations around a patient’s goals of care and around whatever prognostic information we can share with that patient.
Dr. Stieg: I’m interested in how you’re handling this. You know, I guess I’m old school. We, we relate empathy and compassion to a patient by being able to look them in the eye. Now with social distancing technology, iPad, Zooming, I’m even seeing it in my own faculty and my residents, everybody’s a little bit starved for interpersonal interaction. How are you mixing the two? How are you applying these social distancing techniques and still able to communicate compassion and empathy?
Dr. Kolbe: I think you’re absolutely right and I don’t want to sugarcoat it. I think there is a loss there when we lose the ability to have some of that tactile experience of connecting with patients. Some of the ways of being able to, you know, register visual information about our whole face, their whole face, the subtle visual cues that we get from really looking a person in the eye and, and watching their faces. So I think that is really an unfortunate loss and we’re all looking forward to the day when perhaps we’ll be able to reincorporate the rest of our senses in the way that we interact with patients. But I think in the meantime we have been doing our very best to try to amplify the sensory modalities that we do have and connect even more with patients using the modes that are left to us. And so for example, we’ve been using a lot of different tablet technologies to try to have audio-visual connection with patients as frequently and extensively as we possibly can.
Dr. Kolbe: And so that can be used to have interactions between clinicians and patients, between nurses and patients, between patients and their families. And we’re even really lucky that we’ve a wonderful outpouring of donations from people, from nonprofits, from businesses all over the city who have given us even more of these tablets that we can use. So that we hope that every patient who doesn’t have his or her own access to smartphone technology or to some of these other technological advances will be able to use one of these tablets that they can be in close, close connection with their doctor and with their family.
Dr. Stieg: So basically what I’m hearing from you is that the technology somehow hasn’t interfered with that interpersonal relationship. In many ways it can facilitate it because it’s more readily available.
Dr. Kolbe: I think that’s true. I think we’re all conscious about wanting to safeguard public health and the health of our clinicians by trying to wisely limit time in the room, be mindful of our resources in terms of PPE. And so as we spend maybe slightly less time in each patient room, we’re trying to spend even more time connecting with the patients using those kinds of audio-visual technologies. When we are in the room, we’re trying to use kind of lower tech common sense things to help connect with patients as well. And so for example, I thought that it would be helpful if my patients could see what my whole face looks like since they really only see this narrow bit between my mask and my bouffant. And so, uh, I started wearing a picture of myself on the outside of my PPE and leaving a little photo of myself so that they have a sense of who their doctor actually is in their, in their entire face. And a lot of doctors have also started doing that in our hospital. And I think it’s a small gesture is a low tech gesture, but it’s really helpful just as that patients feels that their doctor sees them as an individual and is an individual.
Dr. Stieg: I have to ask you the difficult question. Uh, I just can’t imagine the pain and suffering that individuals are going through not being able to be near their loved one when they pass away.
Dr. Kolbe: It really is excruciating and I agree with you that I too cannot imagine what that experience is like and I wouldn’t presume to know. I do think that we have been trying are very, very utmost to create the richest and most extensive sense of connection that we possibly can between patients and their families. And so I think again, sharing that audio-visual space can be deeply meaningful for patients and families either as a way of saying goodbye or in some cases just bearing witness and sharing presence. Sometimes we have patients who are too debilitated to really communicate with their families, but I think there’s still shared connection and shared presence that happens just from having each other’s in front of each other or being able to look as family, walks them through their home, shows some, some of the familiar sites of their family and to familiar objects that they love around their house and around their home environment. We’ve been trying to facilitate things like that as some, some solace in this really excruciating time.
Dr. Stieg: That has to be the difficult aspect also is, you know the patient that comes in relatively healthy and then all of a sudden they have an acute decline because of their lung status. When is it appropriate to start palliative care without seeming like you’re being negative but rather trying to create an area of compassion and encouragement and a healthy life.
Dr. Kolbe: I think it’s important to emphasize with patients that when we ask for the involvement of palliative care, it’s not necessarily because we’re conveying bad prognostic news. It could be because we’re witnessing a lot of suffering in a patient’s symptom burden and palliative care clinicians are incredibly masterful at helping to manage those symptoms. Even in cases where the patients, other doctors and the rest of their care team is working strenuously to get this patient better and out of the hospital. So those two things can happen in parallel. Really expert, expert symptom management at the same time as a aggressive medical care. It’s not necessarily a zero sum game. And I think that’s important to convey to patients and their family.
Dr. Stieg: I’m curious, you gave the example of the patient where you can’t communicate and the family can’t communicate with them. How do you in that scenario, make sure that the patient’s wishes are being heard? Is it through the family?
Dr. Kolbe: So in an ideal situation, a patient has already discussed with their loved ones who they would like to appoint as their healthcare proxy, meaning the person who could make medical decisions on his or her behalf if the patient was no longer able to communicate those wishes. And so in those instances it can be relatively straightforward that the clinical team knows who to turn to who can help you. So what we call substituted judgment, meaning trying to put themselves in the shoes of their loved one and determine what would my loved one want now that we are at this fork in the road? Sometimes patients have not designated a healthcare proxy and then that can be more challenging and it can be an extensive effort on the part of the clinical team to discuss with the family and try to determine which family member really has the most information about a patient and what can that person share with us about prior conversations, prior beliefs, how that person has responded to other illness scenarios in his or her life.
Dr. Stieg: And I’m presuming this is a team effort, meaning that it’s not just you walking into the room with a white coat, but the nurses are coming in, the physician’s assistants are coming in and it’s done in a more conversational form and you can basically get a sense for what the patient’s view of the situation is. And then you as a team try to work with them about their individual feelings. And in particular I’m thinking about say their spiritual needs or their concern about their family or their financial concerns.
Dr. Kolbe: That’s very true. And I try not to assume that because I’m the doctor on the team that that means I know best or I know most about a patient. I think I try to be acutely aware of how sometimes there might be power differentials at play that a patient feels the need to present himself or herself one way to the doctor. And then maybe when I leave the room that patient feels like they can be a little bit more candid about what’s going on to someone else who’s on the care team. And so I try to always keep that humility in mind as well that sometimes the rest of the team can be even better eyes and ears for uh, the information that we’re getting.
Dr. Stieg: I was listening to all of the things that you just said and it struck me as why I went into medicine. I wanted to know my patients. I wanted to be a part of their family, a part of their personality. I wanted to help them figure out their healthcare needs. Is it your view that we’ve — medicine has transformed and now this is becoming the job for palliative medicine? And other doctors have other jobs?
Dr. Kolbe: I hope that’s not the case. I think it can be helpful to have a branch of medicine where people are master communicators and have a really advanced level of sophistication in the way that they communicate with patients, the way they treat patients holistically and the way that they encounter suffering and try to improve quality of life. I think it’s absolutely appropriate that we have people who are master experts in that domain, but I think that the next step is that that philosophy needs to trickle to the rest of medicine and that it’s incumbent upon all of us. It’s really part of our duty to care that we all take on this work to a certain extent and try to remember that we’re not treating a set of vital signs This is of complex human individual in front of us.
Dr. Stieg: Let me ask, it’s gotta be difficult also for a young patient that comes in and they have children. Have you had to negotiate? Are you able to negotiate a visit from the children or do you do it via iPad or Zoom or things like that?
Dr. Kolbe: For the most part, we have been trying to limit the presence of visitors in the hospital for a number of reasons. I think primarily to protect that visitor from accidentally acquiring an infection from being here, to protect the public who might come in contact with that visitor and to protect healthcare workers as well, And so we’ve had to be very wary and very, very cautious about when visitors can come into the hospital. At the moment, we can find creative ways to have onsite visitors for patients who are at the very end of life who are unfortunately actively dying. And we can also occasionally find ways to have onsite visitors for patients who have real chronic issues with advocating for themselves. So for example, a patient who even before illness had profound cognitive disability, that person might need an onsite advocate in some cases to really help us get at the needs and wishes of this person.
Dr. Stieg: Regarding the patients specifically, what do you find have been the kind of one, two or three greatest concerns or greatest fears on their part? Loss of control, pain, what is it?
Dr. Kolbe: Yeah, I think loss of control is a huge one and I think that has a few different dimensions. I think there’s the sense that we all feel that, something about this disease is in some cases beyond our control and sometimes even when we do our very, very best in terms of medical care, the disease can surprise us and confound us at times. And so I think that is a shared sense of loss of control that patients and clinicians feel together. And it’s a very scary thing for patients. I think there’s also a sense of loss of control because patients may be worried that it will be harder for them to advocate for themselves within the hospital, that they imagine that they go into their hospital room and the door is shut and then they lose their voice in terms of their ability to communicate with their care team.
Dr. Kolbe: We’re doing our very best to allay and assuage those kinds of fears immediately. And I think we can honestly say that their voice is very much heard by their clinical team and that we absolutely want to hear their, their opinions. We want to hear about their physical symptoms. We want to know how we can do better as a team. If anything. We’re trying to be even more, searching and proactive in having ways of patients to communicate with us and advocate for themselves even if we’re not spending as much time physically in each other’s presence.
Dr. Stieg: You’ve heard the expression this is a war. And to a certain degree, I mean, yes, it is a war. I’m not disagreeing with that. But war is a little bit different, particularly as a doctor, you know, when you have a wounded veteran or a wounded soldier pulling in with a gunshot, you know exactly what you need to do. Currently you’re fighting an invisible bullet and that’s different than real war or guns are being fired. What have you learned or what are you taking away from this COVID-19 front line warfare?
Dr. Kolbe: That’s such a great metaphor of the invisible bullet, I hadn’t heard that or thought about it in those terms before, but I think that’s absolutely right and I think it brings up the issue of clinical humility that all of us are learning things that we didn’t know six weeks ago, in some cases, things that we didn’t know two weeks ago. And that the part that’s been kind of beautiful about this experience is it puts us all back in the role of humble students and we’re all trying to learn from each other’s cases, learn what this disease can teach us, learn what our patients can teach us from their experience of the disease. And so I think the body of knowledge that we’re collectively acquiring together is accelerating. And it’s exciting to see at the same time. Yeah, I think the war metaphor could be apt in that it calls many of us into roles and capacities and talents that we haven’t taken on before or that we didn’t know we had. And again, I think that there’s something almost bittersweet in that experience that on the one hand, many of us feel at times strained to the utmost limit of our powers and our talents and our body of knowledge. On the other hand, we’ve learned dimensions of ourselves and dimensions of our colleagues that we maybe didn’t have an opportunity to see before we were in this crisis and in some ways I feel like it’s brought out the very best, the most courageous aspects of my colleagues, and it’s really felt like such a privilege to be here.
Dr. Stieg: Laura, I want to thank you again for being here. I think that in listening to you, I’ve once again re-appreciated how the hospital, the healthcare system, and we as physicians haven’t lost that sense of compassion and empathy and our desire to relate and ease suffering for our patients. I think you’ve also related to individuals that it’s not taboo to talk about suffering and death, the psychological problems that go along with bizarre diseases like COVID-19. I hope that more people will listen to you and I look for the growth of palliative care within all healthcare systems. Thank you so much for being with me today.
Dr. Kolbe: Thank you. It’s been such a privilege.