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Palliative care physicians specialize in easing suffering—their job is to support patients and their families as they manage serious illnesses. They know the value of making time for compassion in the midst of a crisis. These days, palliative doctors and nurses are being called into hospital emergency rooms more and more to help the doctors manage the crushing numbers of COVID-19 patients facing intubation on life-support systems and, often, death. They’re not the only ones—doctors and nurses from all kinds of fields have had to take on new and difficult roles during this pandemic, often discussing end-of-life scenarios with critically ill patients’ family members in ways they previously wouldn’t have.
Dana Lustbader, the chief of the department of palliative medicine at a large New York physician provider group, has seen some elements of her practice improve thanks to the urgency of the pandemic. Rules on documentation, for example, have been relaxed, she said, so she has been able to spend more time with patients and less “inputting meaningless data in a computer.” But the reality is that the work is harder than ever before. I spoke with Lustbader about those difficult conversations, how this moment might change our approach to palliative care indefinitely, and how to practice empathy in some of this pandemic’s most difficult moments.
Molly Olmstead: What message do you have for other health care professionals without your experience?
Dana Lustbader: We’re going to be having a lot more palliative care during the next phase of COVID-19 as we start to have a lot of people on ventilators [who are] not going to wake up. We’re going to start to have to have some really hard conversations with their family members or their health care proxy, if they have one, about what to do next.
So it’s important that we include as many other members of the team as possible to hear how we have these very difficult conversations. On Sunday I was in a Queens hospital, which is really the epicenter of the epicenter. I was doing a lot of these calls, and I brought in with me the ICU nurses. There are a lot of other physicians rotating through the ICU, like a dermatologist, a surgical oncologist, and a couple of other residents who normally aren’t even in the hospital. As we’re pulling in other doctors to help out, bringing people into these conversations helps their skill level.
What’s it been like to pull new colleagues into these settings?
I had a [58-year-old] patient who was on a ventilator for two weeks. She was very borderline in terms of her ability to come off the ventilator. So I did a video visit with her son, and you could just see her completely wake up. He started to say a Catholic prayer to her in Spanish. She started to get teary, and her hands started motioning that we should take the breathing tube out. That visit with her son was so motivating it gave her the fortitude to just breathe on her own.
The nurses were in the room, and they were just watching this—they had never seen a conversation like this before. And they were, I think, worried that he wouldn’t want to see his mother this way with a breathing tube in. And it was the opposite. He wanted to see her—his fear was such that his thoughts were just so much worse than reality. So he was crying with happiness to see her. And the nurses were just surprised.
Do you have any advice for how doctors should approach these conversations?
One of the best practices here is to start those conversations early. Most doctors are not trained in serious illness communication and don’t do it very well. It’s not something you’re born knowing how to do.
A good way to do [a call] is to first say, “We’re just calling to give an update.” The first thing they think when they see a hospital ID is that their loved one has died, so we want to make sure that we let them know that this is not yet an emergency. The second thing we might do is ask how the coronavirus has impacted them, because we’re finding that sometimes the person we’re calling is also in the hospital, or they’ve just lost another relative, or they’re at a funeral, or they’re doing a Zoom funeral, or they just lost their job today. So understanding where they are right now, as a result of this pandemic, is important. And that’s different from our usual practice. We didn’t usually ask people how they were doing. But this is important now.
And the next thing we ask them is what the doctors told them. Because sometimes, they actually don’t know anything. They might not even know that their loved one is on a life-support machine or a ventilator. Maybe the team didn’t have time or have the right phone number to call. The next thing we like to do is ask is if this is a good time—it’s giving them some control and asking permission to see if they’re ready to move forward.
What do you do when they are ready?
[Try] to really understand what the patient wanted and valued—what kind of person are they? what do they value in life?—so we can make the important decisions together going forward. We don’t want to put the burden of a medical decision in someone’s lap without sharing in that. Would it be OK to be in a nursing home on a ventilator with a feeding tube, not recognizing the people around them? For some people, that might be OK, but for most, it’s not. We can, as medical professionals, help make these critical decisions based on what the patient values in life.
Here’s where also these video visits are so helpful, because when you’re having a conversation in person, you can see their body language and you know when to be quiet because you can tell that they’re starting to get sad or to cry, and you don’t want to talk over that emotion. You want to just sit with it and be empathetic. With a telephone call, it’s sometimes hard to know what’s going on on the other end. By adding the video component, it’s allowed us to see that a family member needs us to pause or that they’re just really having a hard time with what you’re saying right now. And it gives us a lot more information, and it makes the call and the interaction better.
Do you have any advice for the public while we’re on the topic?
It’s really important that all adults over the age of 18 who have the capacity to do so pick a health care proxy who is going to make decisions for you. Decisions about life support, about surgeries, about other treatments, amputations, other kinds of medications, dialysis. You just go to a website, you download your state’s health care proxy form. We’ve seen with this disease, it can impact someone at any age.
Do you think any of the ways you’re practicing now will change palliative care beyond this pandemic?
I think one of the biggest changes that we’re going to see [in palliative care] after COVID-19 is the use of telehealth. Prior to this, there weren’t many practices using it routinely. And because some of the [legal] restrictions have been lifted, we can do FaceTime or Zoom or WhatsApp, whatever is easiest for the family members. We can keep them in the loop in ways we wouldn’t normally have been able to before. Right now, families aren’t permitted in the hospital to see patients, so bringing in telehealth so that we can do a virtual visit with a patient or family can be so incredibly meaningful.
I had another patient who was beginning his dying process. A 52-year-old man, otherwise perfectly healthy. He had a wife and a daughter, and I called the wife to see if she would like to do a telehealth visit with him, and she didn’t. [Then] I did a video visit with the daughter. The dad was paralyzed with the medications and sedated heavily and on a breathing machine, so all she could see was his back and then all these tubes coming out. She asked if I could show her the breathing machine. She wanted to see his face. She wanted to see where the tubes were going in. She wanted to understand what was being done. And even though he was dying, and she was crying and extremely sad, she was grateful to know that everything was being done for him. Because in her mind, she couldn’t see him, she didn’t trust that we were really doing everything, and I think she wondered even if he had a ventilator. For her, it was so important to see that. So the daughter spoke to her mom, and later that afternoon, the mother called back so she could say goodbye. And that ended up being a very meaningful and important thing to do because he died shortly after that visit.
On a lighter note, I have an outpatient palliative care practice to take care of a lot of people with advanced illness, and it has become wonderful that we can still stay in contact with them. With some of the restrictions lifted, we can use FaceTime. If they’re socially isolated, we can try to help them think of ways to get connected with other people. I had a patient yesterday I did a telehealth visit with who hasn’t been out of the house in two months. She had breast cancer, and she’s in her 50s, and she’s so terrified of getting COVID-19 that she won’t even step outside her apartment. And she’s very depressed and is having nightmares about being in the hospital alone. So we talked about taking a baby step, just getting dressed and opening the front door. It’s so important that we reach out to people suffering from mental health issues and see them with a video call.
Speaking of checking in on people, you have a very emotionally challenging job. How have you been during this?
It’s hard. It’s really, really hard. We haven’t really had a lot of time to process it. Some of us are together on a Slack chat group. And some of us kind of support each other through WhatsApp. And we debrief and sometimes share how hard things are there. But there hasn’t yet been time for that.
I called this patient’s husband Saturday just to tell him that his wife wasn’t doing well. She had a brain bleed or stroke, but also got COVID-19. He was lonely and desperate for her. He has thyroid cancer, and he was supposed to have surgery this week, which they canceled. But at the end of the call, he thanked me for my service. Which made me start to cry in the middle of the ICU. Here he is losing his wife, and he’s thanking me. Every now and then, it’s something like that that’s incredibly moving.
I’m a midcareer physician. I’ve been around a long time, 25 years practicing. I see people die, generally who are very, very sick and terminally ill. What’s different here is these are young people dying. The amount of people dying is just so much in one day.
I really worry about the younger physicians. I was two weeks ago leaving the ICU after a 16-hour shift—I do critical care also—and it was four floors of COVID patients on ventilators. As we’re leaving, a patient had died. And the nurse taking care of the patient, as we’re walking out, started to cry. He said he had just come up here from San Antonio to work here for several months, and this was only his third death in his entire career. I worried about him that night when he went home. And these new doctors who graduated medical school early who we put on the floors to help out, we moved them into the ICU. We promoted everybody into higher positions or to jobs that normally they would never do. And these are people who I think are going to have a lot of PTSD.
What would you like the public to know about your experience?
I don’t think people really understand what’s going on inside the hospital. You know, when I drive to the hospital, there’s nobody on the Long Island Expressway, and I park right in front of the hospital, in the middle of Queens. There’s this disconnect between what we’re seeing outside, but then you go inside the hospital, and everybody’s wearing these N95s and spacesuits and goggles. We have very few ICU nurses—they’re mostly nurses from other departments coming in to help. There was a pediatric ER nurse there taking care of adult ICU COVID patients, and one of the patients was her dad. It’s just, like, war rules. And every two hours you hear overhear “code 999.” And that’s somebody else not breathing, going on a machine. It’s just constant like that. Then you leave the hospital and you go back to the car. And there’s nobody outside, and it’s a pretty day. And it’s just a disconnect.