A clinical nurse specialist shares some surprising lessons she learned as a hospitalized patient.
Jeanette L. Fraser is a clinical nurse specialist at the Medical Center of the Rockies in Loveland, Colo.
The author has disclosed that she has no financial relationships related to this article.
I'M NOT THE FIRST nurse to have lived through a serious illness, nor will I be the last. But my learning experience during a recent illness was unique. Each of us incorporates our own past experiences when applying new knowledge, a process known as experiential learning.1 During my hospitalization, I was able to see the care I was receiving through the unique perspective of a clinical nurse specialist.
The learning begins
My illness began with a high fever. I also had perianal and labial rashes. Then came electrolyte imbalances, liver function abnormalities, increasing oxygen demands, and hypotension. These were accompanied by nausea, emesis, urinary and fecal incontinence, and diarrhea. Despite an array of diagnostic studies, the cause of my illness remained unknown.
I was too ill to have the energy or desire to wear my nursing hat while I lay in my hospital bed. But I was keenly aware my health was deteriorating steadily.
Throughout the blur of illness, I had several key learning experiences. I discovered what it is to be a seriously ill patient in a manner that books, clinical hours, or lectures could never convey. I began to question particular practices I'd been insisting clinical nurses employ. I experienced little, if any, benefit from some practices while the value of others was reinforced.
The following experiences deepened my understanding of being a patient.
* Some nurses complained about how busy they were while in my room. Telling patients how busy one is through body language or verbalizing creates a barrier to care. Patients will either not call when they need to, or won't want to let a nurse leave their room because they don't know if or when another one will return.
* I overheard conversations about nurses' personal lives and gossip about other staff members and patients. A seriously ill patient doesn't have the energy or desire to know about the staff's personal lives. Self-preservation and survival are most important to the seriously ill patient. Don't forget that voices drift into patients' rooms even when spoken in normal tones in specially designed sound-reducing facilities. Patients who overhear complaints about unidentified patients and personal gossip about coworkers will wonder how well staff is guarding their own privacy.
* I sometimes had trouble sleeping at night because of noise on the unit. The value of quietness at night can't be overstated. Illness and stress already interfere with the ability to rest comfortably, and unexpected noise disturbs sleep, which is fundamental to healing.
* Nurses assisted me with activities of daily living and made sure everything was within reach. The importance of anticipating patients' needs is vital to their overall recovery because it lets them rest.
* Staff members introduced themselves and said goodbye before leaving. Introducing one's self at the beginning of a shift and saying goodbye at the end shows true caring.
* I was told what medications were being given to me, but not provided with a plan of care. I really hungered for a daily plan. Discussing and knowing the plan gives patients a sense of control in an otherwise powerless situation, even if they have little to no strength to actively participate in decision making.
* The multidisciplinary rounding teams made me feel exposed and vulnerable, even though I was a healthcare professional myself. Too often, healthcare professionals communicate with each other in terms that are hard for patients to understand, intimidating them. I couldn't think clearly in my weakened state, so I had trouble communicating my needs. However, when the clinical nurse specialist came to assess me, she successfully identified my needs and communicated them to the rest of the healthcare team.
Diagnosis, then recovery
After more than 2 weeks in the hospital, a new infectious-disease specialist took the time to listen to my partner. His inquiry about the possibility of a medication reaction being the cause of my illness was the key. My knowledge was locked away by my illness, and my partner had only observation skills to offer. But the specialist's willingness to listen, combined with his expertise, led to a diagnosis: drug reaction with eosinophilia and systemic symptoms (DRESS), which is a potentially life-threatening drug-induced hypersensitivity reaction.2 It was caused by a medication I'd started 21 days before the onset of my illness. In most patients, the reaction starts 2 to 6 weeks after taking the drug; fever, malaise, lymphadenopathy, and skin eruptions are the most common signs and symptoms, but they're not always present.2
I rapidly improved within 3 days of discontinuing the medication and was discharged home with instructions to avoid the drug as well as any cross-reacting drugs. I was also advised to tell any family members about DRESS in case of any genetic factors.2 This was my final experiential learning opportunity: Carefully listen to patients and families, regardless of their background knowledge in healthcare.