He had been living a normal life as a senior in high school when he sustained burns to 60% of his body in a motor vehicle accident. He spent the next six months in our burn unit, missing out on such milestones as high school graduation, traveling during summer break, and freshman year away at college with his high school best friend as a roommate. Instead, his new life included such medical milestones as a tracheotomy, feeding tubes, multiple skin excision and grafting surgeries, amputation of digits, loss of his previous physical appearance, and diminished physical capabilities due to scarring and loss of body parts.
Our burn center is a self-contained unit in which we provide care from the ICU through to discharge. We have our own operating room, hydrotherapy rooms, and physical and occupational therapy room, all separated behind locked doors from the rest of the large teaching facility. Patients frequently stay for extended periods while in recovery, in between their multiple surgeries, and over the course of treatment.
Unsurprisingly, some patients become accustomed to their new environment and the hospital routines. This patient and his family, who remained at his bedside throughout his stay, were anxious about the many unknowns related to prognosis as well as the cost and trajectory of treatment. Developing trust with them was a challenge. They worried about anything outside of the accustomed routine; any new information or process disrupted their equilibrium and required deescalation and time for them to adapt.
As one of his primary nurses, I had gotten to know this patient's needs well, and we had grown familiar with each other's habits and personalities. I always try to encourage patients to either return to self-care or achieve their highest level of functioning possible. I decided to help him to normalize daily tasks such as taking an actual shower.
This seemingly simple task took three hours, with half the time spent on addressing his anxieties. The night before, I showed him pictures and videos on my cell phone of the shower room, so he could visualize the event ahead of time. I also showed these to his parents so they could help ease his concerns about the process, and I let him sit in the shower chair prior to the shower to see if it met his needs. I gave him time to ask questions about the process, from what we'd do with his tracheotomy and PICC lines in the shower to what kind of soap I was going to use on him (the same soap he had been washed with since his initial debridement months ago). This digestion period allowed him to begin to accept this new process in advance.
My next shift with this patient was on the 4th of July. Since he and his father were reminiscing about watching fireworks together on prior Independence Days, I offered to take the patient to a location in the hospital where he would be able to see the fireworks. His response was an emphatic "No!" to venturing beyond the confines of the burn unit for the first time since his admission. He was particularly afraid of how his altered appearance would be received by others. Up to this point, he'd declined multiple offers to help him look at his face in a mirror or at photos taken on a cell phone.
After having time to process this opportunity to leave the unit and spend time with friends and family, he began to question the practicality and step-by-step logistics of such a trip. All of his concerns were addressed, and his specific requests were met. We traveled to our hospital's rooftop, where other patients, family members, and staff were enjoying the light show in the sky. The patient, along with his friends and family, snapped pictures and videos of the fireworks. Observing the boats on the harbor, they talked about future plans of going out on their boat again.
While it would be another month before he was able to leave the burn center for inpatient rehab, in the days following there was a shift in his confidence and his participation in his own care. He said it had helped him see how completely his life had changed, and that he just had to accept his new normal. He subsequently applied to a university in his hometown in order to be close to his family and made plans to enroll in a few online classes in the spring semester.
As nurses, we have to keep in mind that what we see every day is our normal, but many of our patients have no experience dealing with how an injury or disease trajectory will affect and change their lives. Nursing goes beyond measurable outcomes; it extends to the relationships between nursing staff and patients and their families that help them to adjust to their new normal.