In the winter of 1994, I was working as a young nurse in the respiratory ICU at a hospital in Lansing, MI. Upon my arrival one morning, I reviewed the records of the two patients I would be responsible for that day. One of them was Mary, a 54-year-old Mennonite woman with rheumatoid arthritis (RA) who had been put on a ventilator.
As with many of you, my formal education regarding rheumatologic conditions was sparse. I knew that RA was a disease that could rapidly deteriorate the bones and joints, but it was a mystery to me as to why an RA patient as young as Mary would need a ventilator to support a basic life function. At the time, I simply didn’t know the damage that RA could do.
Mary’s treatment regimen was simple but appropriate for the era – intramuscular gold and steroids. She had been admitted to the ICU after complaining of shortness of breath. It was clear that RA had affected her lungs, causing pulmonary fibrosis.
In the week that I took care of Mary, I learned a lot about her and her family. One morning, I was busily getting her medications crushed to put in her naso-gastric tube along with checking her vital signs and reading her ventilator settings when Mary’s husband came into the room and told me a story I have never forgotten.
I can still picture him today. Wearing a blue shirt and suspenders, it was somehow very important to him that I, as Mary’s nurse, understand her background and her life’s journey that brought her into this hospital room.
He told me that Mary was a simple woman who never wanted or asked for anything for herself. With two teenaged daughters and a loving husband, she always put the needs of her family first.
That’s why Mary’s husband was surprised when she approached him a few weeks before being admitted to our hospital and asked if he could take her to a local store to buy a bolt of fabric. At first, he couldn’t understand why. While he could see that Mary was increasingly fatigued and complained often of being short of breath, he didn’t yet know how serious her condition was. Nonetheless, he took her to the store the next morning and bought her the fabric she wanted.
Over the next few days and weeks, every night that her husband came into the house after a day of farming, he found Mary sitting in her rocking chair with that bolt of fabric, sewing and crying. It wasn’t until she was admitted to the hospital and attached to the ventilator that Mary’s husband understood that she was sewing the dress she wanted to be buried in.
Mary knew how seriously her RA had compromised her health, and she was doing the only thing she could to take control of the situation. Later that week, surrounded by her family, we took Mary off of life support and she died peacefully.
What made Mary memorable to me, and why I recall her story so vividly 20 years later, wasn’t the bond that she and I shared. In fact, she and I never actually spoke a word to each other. What I know of her came only in stories told to me by her family.
Instead, it was the toll that RA can have on the life of a young mother that resonates with me. I left the ICU and took a job as a nurse practitioner in a rheumatology office in 2000, so today my hours are filled with RA patients of all ages and sizes. Every once in a while, I even see a “Mary” who talks to me about her teenaged children and how she wants to do everything she can to be there for them as they blossom into adulthood. I’m grateful that we’ve progressed in the era of biologics where I can offer patients much better options that can help avoid major deficits in quality of life and even death.
All of our patients have stories, and we learn about the lives of many during the course of our careers. As nurses, we are taught to be compassionate and to listen. It’s inevitable that there will be days when we may not be at our best and our patience will be tested, but we should never forget that the needs of our patients must always come before ours.
Iris Zink, MSN, NP, is a nurse practitioner at
the Beals Institute in Lansing, Michigan, and the
President-Elect of the Rheumatology Nurses Society.