Leading through COVID: Supporting Patients and Families 

Adapted from a phone interview, May 7, 2020.

I work as a palliative care nurse practitioner at Montefiore, a big academic medical center in the Bronx. The entire hospital was, essentially, filled with COVID-positive patients.

The palliative care team includes doctors, nurses, social workers, and a chaplain. We support the patients and their family members—helping them to understand the medical information, trying to provide some emotional support, and in many situations, unfortunately, assisting with symptom management for patients near the end of their life and suffering from a lot of difficulty breathing.

For many of us, we’ve never seen a new disease emerge in this way. Some of my colleagues who had experience with the AIDS epidemic are finding a lot of similarities.

When I go home at the end of the day, the experiences at work are living with me and inside of me. The same is true for my colleagues. In addition to the emotional toll, almost everyone in my department has been sick, myself included. I’m concerned about making other people sick. I haven’t hugged my fiancé for two months. I’ve been sleeping in a separate bedroom. I haven’t visited my family because of worries about spreading COVID.

The Same, But Different

This pandemic has blown apart what I do. The spirit of the palliative care work is the same, but everything is different. We still explain complicated medical situations to patients and family members in ways that they’re able to understand and do our best to provide emotional and psychosocial support. But COVID has changed the nature of interactions entirely.

There’s so much uncertainty around the science. There are no treatment options that we’re able to provide people right now. We’re only able to see our patients while wearing spacesuits with goggles and masks. We can barely recognize our coworkers. Trying to interact with patients while covered up or having these incredibly personal conversations with families over the telephone—it has completely disrupted all of the things that I’d identify as being most important in my job. It takes away the things I think make me good at my job.

To limit transmission, families and patients can’t see each other. All of the usual rituals that we might go through as a family when someone is very seriously ill—visiting them in the hospital, bringing them home on hospice at the end of life, specific religious rituals, simply holding your loved one’s hand and saying what you need to say—those aren’t possible now. It’s devastating.

It’s really difficult to be separated and not able to comfort a family member when they’re going through something that’s so serious, but the patients are not alone. Some families are imagining conditions are worse than they actually are. They fear that their loved one is shut behind a closed door in the dark and not getting the medical attention that they need. I can emphatically say that has not been true. Nurses, nursing assistants, doctors, respiratory therapists, and social workers are constantly checking on the patients.

However, with many COVID patients there are communication barriers. When people have difficulty breathing, in and of itself, it’s hard to talk. With decreased levels of oxygen, people become less able to engage. Often the patients are too ill to participate in conversations about the level of aggressive care that feels most consistent with their values.

Since many patients are younger or only had conditions that we don’t necessarily think of as being so serious—high blood pressure, diabetes, being a little overweight—they haven’t had difficult conversations with their families. If the doctors say they won’t get better, do they want to die naturally or live in a nursing home on a breathing machine even if they won’t wake up again? Families are having to make those kinds of choices for their loved one over the phone.

The sadness, the overwhelming things that patients and their families are facing—it feels so heavy. If we can avoid that for people, that’s important.

Processing Emotions Is the Job

Life happens in real time. There have been so many changes in such a short period. The whole thing is so shocking. It’s hard to comprehend how big it is, how many people it’s impacting.

Even so, emotionally processing these experiences is part of our jobs. Working on a team of people who tend to have a lot of insight and thoughtfulness has been very helpful. There are a lot of conversations about what we’re feeling. That verbal processing of the fact that our work and the patients that we interact with have a significant impact on each of us is helpful.

The hospital is making a concerted effort to provide avenues to do that. I listened to a talk describing the guilt that many healthcare workers are feeling, about not having a complete understanding scientifically of what this disease is, how it works, and how we can fix it. Guilt that we’re not able to embrace the families and help to support them while they’re losing their loved ones. I used to work as an ICU nurse; I would be in a patient’s room for 13 hours straight. That could still be my job. Instead, I’m on the palliative care team and for some portion of the day I get to sit in my office and make phone calls and feel like I’m safe. I feel guilty about that.

This pandemic has highlighted how, within the hospital, supporting each other emotionally pays huge dividends. Checking in so people can just acknowledge how they are feeling is so important. I hope that continues after this initial shock is over. I think working in healthcare is tremendously emotional. This is unprecedented, but maybe we all could benefit from acknowledging how this kind of work impacts us personally.

Passing the Peak

This is the first week since people started getting sick from COVID that our entire team has been well. Until this point, someone was always out facing illness. It is hitting close to home.

I started feeling sick at the end of March, but my symptoms, which were anosmia—loss of smell—profound fatigue, and body aches, weren’t recognized as being hallmarks of COVID until recently. At that time, unless you had a fever, you weren’t eligible to be tested and were assumed safe to come to work. I took two days off. Then, like many healthcare workers, I bundled up in PPE at work and kept physical distance at home.

I took an antibody test this week; I am positive. It’s validating that my symptoms were secondary to the virus and not simply a stress response to the pandemic. But it’s not terribly helpful when it comes to ongoing safety. I’m still trying to make sense of what having antibodies might mean for my health and the possibility I could spread the virus to others. I wear PPE when I am interacting with known positive patients in my job and a surgical mask throughout the rest of the day, including on my subway commute.

It’s still very raw, but the hospital does feel very different as we’ve passed the peak. There was so much uncertainty about how much more could we stretch. How many ventilators were we going to need? How many more people could possibly fit inside the emergency room? That uncertainty on top of the severity and sadness of what was happening was a very overwhelming feeling.

Now we’ve learned that the community and the staff in the hospital are tremendously resilient, despite how awful things got. I’ve seen people doing remarkable work facing horrible circumstances. We know, as a collective group, that our hospital can care for that many super-sick people all at the same time. That takes some stress away.

I have been really impressed with how our hospital administration developed a very thoughtful plan to expand with the surge, and then adjust dynamically. Patients are no longer staying in the hospital conference rooms. There’s only one extra ICU still open. We are almost back to a more typical number of hospital beds.

It gives me confidence that whether we have a second surge or go back to, quote-unquote, normal, we’ll be able to handle it. I feel worried about clinicians and staff at hospitals in other parts of the country. They’re sitting on that edge of the unknown. What will happen when they get their surge? You just don’t know what’s going to happen. For us, for now, that has been resolved.

Being a Nurse

This hasn’t changed how I feel about healthcare. Being a nurse is a natural extension of who I am in the world. I’m very interested in science, research, best practices and applying those things to supporting people in living their healthiest life. There’s also a huge component that’s holistically looking at patients as human beings, including the psychological and emotional factors that go into who they are. I love the places where the caring aspects of nursing and the science aspects of nursing collide and how they can fit together.

I’m very passionate about the role of nursing. I chose to be a nurse, not a doctor, because nursing offers an opportunity to interact with patients in a different and important way. I got an MBA because I believe that perspectives from the field of nursing can add a lot of depth and understanding to the way that we are approaching healthcare policy and the business of healthcare.