Few can argue that the world has been a far more challenging place since the beginning of 2020. From the onset of the COVID-19 pandemic, the global community has been thrown into absolute turmoil and nobody can argue the devastating effect it has had.

People have lost livelihoods and loved ones and have been forced to spend months locked away in their homes. Parents have had to go for prolonged periods without seeing their children, and grandparents have missed important milestones in their families' lives.

Of course, few of these challenges can compare with the death of a loved one from the disease itself and hospitals have been pushed to breaking point trying to find enough space and equipment - such as ventilators - to treat the onslaught of COVID-19 patients.

Challenge and Empathy

Of course, due to the highly infectious nature of COVID-19, patients must be kept isolated, and this has led to the utterly tragic situation of sufferers losing their battle with the disease and being unable to spend their last moments with their families and loved ones. One of the most fundamental existential fears we have as a species is that of dying alone, and the COVID-19 pandemic has made this universal fear into reality wrought large.

The healthcare professionals on the front lines of the pandemic have had to witness these events first-hand and it would be absurd to assume they have escaped psychologically unscathed. Their very nature is to care and be empathic and the scenes they've had to deal with must be some of the most challenging they've ever faced.

In fact, we don't need to imagine how challenging it's been, as two nurses working for the Vanderbilt Medical Centre have made their feelings on the matter public with their heart-rending journal entries.

Gabriella Falco

Vanderbilt's Gabriella Falco shared a diary entry titled To Live and Die Alone on her Instagram account, saying, "It's been a long time since a patient has moved me as much as the one I had over the past two weeks has. I felt very strongly that I should honor her by writing and sharing about my last experience being her nurse today. Feel free to share [?]"

The post was shared on the Vanderbilt Facebook page and has received many reactions and comments from users who were touched by the messages contained within.

"Today I held my patient's hand as her last breath left her body," reads the opening paragraph of the entry. "I felt the deafening silence of all her machines and alarms turned off. I heard the pain in her family's heart as they mourned the loss of their daughter, sister, friend. Even through the choppy audio and blurred images of the Zoom call, I could feel their heavy hearts."

The entry goes on for several pages and we encourage you to head over to the Facebook or Instagram page and read the whole thing for yourself.

Sue Perron

Our second tale concerns Vanderbilt intensive care nurse, Sue Perron, who was inspired to share her story by The Things They Carry Project - a program which offers free writing workshops designed to help healthcare workers and first responders process traumatic memories and make sense of their, often harrowing, experiences.

One night when searching for inspiration which would help her process her feelings about the COVID-19 pandemic, she saw a prompt from the project which asked participants to "Write about a time when you knew you were in the right profession."

Reminded of a patient she had cared for and who she had been terrified was going to die, she penned the following story which she called, "The Butterfly Man."

"This is scaring me," I told my Nurse Practitioner, as I continued to turn up my patient's sedation, steadily climbing past the pump's guardrails. "Is this safe?" I whispered to myself, hands trembling.

My NP looked back at me through the patient's door and replied over my respirator's walkie, "Yes, this is scary. We are in uncharted territory; there is no instruction manual for this." Fentanyl, Propofol, Versed, and Nimbex, all reaching maximum dosages as I continued to titrate up. I looked at my patient, strapped to ECMO, trached, vented, hooked to countless wires monitoring vital signs, while all wrapped up in a warming blanket. And, not just any ECMO patient, but one who needed a double or "butterfly" ECMO circuit, that graced their body like wings, to keep them alive.

In street speak ECMO, (extracorporeal membrane oxygenation), is a device that can bypass blood going to the lungs (and sometimes the heart) and pumps it into a machine that filters out CO2 while delivering oxygen to the blood; then, when done, sends it back into a major artery to circulate around the body. The hope is that this will either help bridge to a lung transplant or give their lungs time to heal. It's usually a grim prognosis by the time a COVID patient ends up on ECMO and grimmer if it's two. A simple turn or cough could cause your patient's oxygen levels to plummet and there was no guarantee that that their oxygen levels would recover no matter what medical miracle we perform.

"Hell," I thought, "just looking at them could cause them to code."

I could feel the droplets of perspiration run down my back. My green scrubs were drenched under the protected layers of blue plastics shielding me from the virus. Everything just stuck to me. The cool air from my respirator, my saving grace, fanned my sweaty face. COVID is such a heart-breaking disease. Even if your patient beats COVID their lungs may never recover causing their ultimate demise. Working in a place like the COVID ICU will test you mentally, physically and spiritually on a daily basis. This case was no exception.

My charge nurse knocked on my window. Patient's spouse is on the phone for an update. They live almost three hours away and are now the sole caregiver for their children.

"What do I say? How do I tell someone their loved one is not doing well? How do I avoid giving them false hope?" I thought. I tell them the truth; I keep to the facts. I summarize my assessment, changes in ECMO settings, drip rates, recent labs, and goals for the evening. Sometimes my only goal is to keep them stable until next shift. It's grim. Then I hear her sweet voice over the receiver telling me that God is looking out for us and she has all faith in my abilities as a nurse. "I'm glad someone does," I think to myself, as I fight back the urge to cry.

I get off the phone and doubt creeps in. "What am I doing here?" I ask myself, "Am I enough? What have I gotten myself into? Am I really helping people? Am I really making a difference?" After my shifts in the COVID ICU, I leave with the sick feeling of defeat. It's hard when you see so many of your patients die. You start guessing your every action, decision and intervention. I began doubting my convocation that led me to become a nurse. I call this phenomenon the silent killer of health care careers.

I look around and stare at all the handmade drawings, get well cards and family pictures adorning my patient's walls, a reminder that cocooned within in this nest of wires and medical equipment is a well-loved human being. Praying, I snapped out of my funk and sprung back into action, telling my doubts, "We are not doing this tonight." For the rest of the shift, I focus on here and now. I focus what I can do for my patient in this moment.

As 7 a.m. approaches, the day shift, fresh from their showers and night sleep, shuffle in to get report. My patient is still alive, sedated and relatively stable. I consider this a win in my book. I did the best I could, I told myself. The rest is in God's hands. As I leave the COVID ICU I try not to look back at my patient as it is often the last time I will see them alive. It's too painful. I make it out to the parking garage and climb in my Corolla. Jeff Buckley's "Hallelujah" plays over the radio. I sigh; exhausted, I kick back my seat and close my eyes for five short minutes.

Weeks passed. I try not to think of my previous patients. Just neatly compartmentalize my work life so I can carry on. Oftentimes, I have no idea what happens to my patients once they leave my care. As an ICU nurse, that is one of the luxuries I have. On this particular day it was my turn to cycle back into the "normal" Medical ICU giving me a much-needed break from COVID. As I passed by the charge nurse's desk to get my assignment, I peered into a nearby room. Looking back at me was my Butterfly Man. He waved. I smiled ear to ear.

Perron described the Butterfly Man as one of the sickest and scariest patients she ever had to take care of. The fact that she got to see him recover and emerge from his sickness really hammered home that her role at Vanderbilt made a difference. She was in a highly privileged position to be able to offer a genuinely healing, caring, and transformative experience for her patients - however hopeless things may seem at times.

The story has been picked up by NPR and featured on the front page of The Things They Carry Project's website. Perron hopes the publicity around the story will help show people what the pandemic has really been like for those people on its front lines.

Final Thoughts

We hope you enjoyed this slightly different article today. All too often when talking about patient experience we get hypnotized by exciting technology and other futuristic innovations. However, these stories remind us that, at the core of patient experience, are people - human beings who care and human beings who need to be cared for - and without them, everything else is just noise.

You can hear Vanderbilt University Medical Center's Senior Director of Patient Experience, Brian Carlson, speak at NGPX 2021, taking place in December, at the JW Marriott Palm Desert Resort & Spa.

Download the agenda today for more information and insights.