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A Final Smile by Marie Daniel, R.N.  Neurosurgery/Ambulatory Care In the profession of nursing, sometimes we are fortunate to have the privilege of working with a patient who will not only touch our hearts, but also enlighten our soul. In my nursing experience, one such person stands out clearly in my mind. He was not only a patient in our Rheumatology clinic, but also an extraordinary person.   Brother W was a monk living in the monastery in Moncks Corner who was plagued with scleroderma, a very debilitating and devastating disease of the connective tissue. The exact cause of the disease is unknown. The heart, lungs, kidneys and the gastrointestinal tract eventually become affected as the disease progresses. I became involved with Brother W at this point of his disease as his clinic visits became more frequent.   Living the life of a monk, Brother W was forced to rely on others for his many visits to the Rheumatology clinic. A typical day would consist of an early arrival, long waits for testing and long waits for his physician visits. At the end of a very tiring and trying day, he would then be required to wait yet again for someone to pick him up to make the long drive back to the monastery.    Throughout all of this, never once did I hear Brother W utter one word of complaint. He was very committed to the church, had an inherent passion for giving and a beautiful sense of humor. He never displayed anger or bitterness as the disease began to ravage his body. I truly admired a man who was so devoted and willing to dedicate his life to the church and I recognized that we shared many of the same beliefs in God and spirituality.    With my medical knowledge of the course of this disease, I was able to have a more comprehensive understanding of what was happening as well as what was yet to come. It was heartbreaking for me to see his strength and determination on the outside, when I knew that on the inside, every day the disease was taking its toll. It led me to also question how a man so dedicated to God, and to making the world a more beautiful place, could be inflicted by such a dreadful disease.   Brother W’s disease continued to progress and affect his lungs and heart. His stamina and energy were waning, requiring the monastery physicians to accompany him on his frequent visits.    He endured several hospital admissions, and even upon discharge to the monastery, portable oxygen tanks became his constant companion. With these additional burdens, and his physical compromise, Brother W still carried a smile, his sense of humor, his beautiful humility, and acceptance of his fate.   On the morning of February 26,1998, Brother W was having increasing difficulty breathing. He was on his supplemental oxygen, but was obviously deteriorating and his physician was called. I was looking forward to the end of a long day when I saw Brother W in the waiting room. Noting his difficulty breathing, I knew that something wasn’t right. He was obviously in more respiratory distress than usual, and he no longer demonstrated his bright smile upon seeing me. I immediately took over his visit and called the physician to report my feelings.    The physician asked for a measure of his oxygen saturation with and without his supplement oxygen. I proceeded with this testing and his oxygen was only 87 percent. The physician told me to turn his oxygen from his current three liters to five liters, and send him home.    Though medically appropriate, I felt that to send Brother W away to the monastery with increased oxygen might support his physical needs but at this stage of the disease, I felt that he needed something more.    I instructed Brother W’s companion to bring the car to the hospital entrance to minimize Brother W’s exposure to the cold. As Brother W and I waited for his companion, we talked a bit more about his condition. It concerned me that his usual good humor and positive attitude had been replaced with an unusual complacency.    As we waited for the elevator to take Brother W to the hospital entrance and his awaiting companion, I found myself torn between sending him from a very secure, safe environment or turning back and calling the physician once again.    Over the years I have learned that following my gut instinct and listening to the patients with my eyes and ears is usually the most appropriate decision.  Brother W had become such a frequent patient in the clinic that I knew he trusted us with his well being and treatment, and I felt to send him away would betray that trust as well as my instinct. I chose to call the physician and again stress my concerns. With his condition deteriorating as it was, he needed to be in a setting where technology was minutes and not hours away.    Once in the clinic, I rechecked his oxygen saturation and found my instincts had been correct. I found myself alone with him and took that time to explain to him that I felt his worsening condition warranted admission.   Knowing how the admission process works, and the length of time it requires to obtain a bed assignment, I knew that it might be quite some time before I would be able to leave Brother W.  I left him long enough to call and tell my family that I would be home late in the evening.    After completing his pre-admission work-up, his bed assignment was made, and I transported him to his room. Even as the exhaustion of the day overcame him, he and his companion thanked me for being persistent with the physician and for seeing him through admission.    By helping him make the transition from outpatient to inpatient, I knew my presence there had a calming effect.   Brother W’s companion had to leave to return to the monastery, and though it had also been a long day for me, I did not want to immediately leave Brother W alone. I sat with him and we discussed his disease and his prognosis. He told me that his fears were not about death, but the act of dying. Even facing these fears and discussing them with me, he was quick to assure me that his trust in God was complete and that he would handle whatever he had to face with God’s help.    I was touched by our conversation because his feelings so closely paralleled mine. I stayed almost an hour with him that evening and left wishing I could have stayed longer.    I realized as I left that discussing his spirituality had helped reinforce my faith and helped resolve my earlier questions of how God could let something like this happen to him.    I am devoted to my patients and my career as a nurse, just as Brother W was devoted to the church and his life as a monk. Taking a risk and questioning a physician’s judgement turned out to be the best for Brother W and also signified a turning point in my nursing career.    I feel as a health care team, we are just that, a team. My chosen profession of nursing is not just providing medical care, and following orders, but rather treating the patient as a whole. To provide excellent care requires incorporating the physical, spiritual, and emotional aspects of the person. Brother W was my patient, but he was also a person with fears and concerns that needed to be addressed.   As Brother W’s condition worsened, he was discharged back to the monastery and the decision was made to forego further treatment.    Hospice became involved in his care, and I no longer had the opportunity to experience his smiling face on a weekly basis. I continued to check with his physician on his condition and frequently called the monastery to check on him.    In early August I took several days off, and though it had been six months since I’d seen him, my thoughts were often of him. I decided to visit Brother W at the monastery, but ironically Brother W had passed away the same day I had intended to visit.    I arrived at the funeral and met Father G. He told me of how much Brother W thought of me and how grateful he was for my concern and care. He took me to meet some of the other monks, and to my surprise, they all knew who I was.    I was so touched hearing them talk of Brother W and his kind words that I began to cry. They told me that he died peacefully and that at the moment of his death a smile appeared on his face.    I have noticed that my compassion and empathy for my patients has increased greatly since my experience with Brother W. I seem to be able to deal with them and their chronic illnesses with better understanding and more open communication. I also have a deeper appreciation for the needs of terminal patients to have the support of family, friends, and caretakers to help them face death. Possessing a deep faith in God also helps when facing a terminal illness. I now try to incorporate an assessment of a patient’s spirituality and beliefs, because I know that taking the time to talk with them will enhance our relationship.  Editor's note: Reprinted with permission from “Many Faces of Nursing.” Catalyst Online is published weekly, updated as needed and improved from time to time by the MUSC Office of Public Relations for the faculty, employees and students of the Medical University of South Carolina. Catalyst Online editor, Kim Draughn, can be reached at 792-4107 or by email, catalyst@musc.edu. Editorial copy can be submitted to Catalyst Online and to The Catalyst in print by fax, 792-6723, or by email to petersnd@musc.edu or catalyst@musc.edu. To place an ad in The Catalyst hardcopy, call Community Press at 849-1778.