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ENCOURAGING SERVICE THROUGH COLLABORATION
Evelyn’s story by Sue Idczak I have been a nurse since 1977, a clinical nurse specialist (CNS) since 1984. My practice years included care of acute cardiac and renal patients. Since 1996, I have been an instructor in a baccalaureate school of nursing. Over the years I have been a nurse, I have cared for a variety of friends and family, but never in quite the same way as I cared for Evelyn. Evelyn was my mother-in-law, my close friend and a special woman. That’s the personal side of this story. The case study she lived as a renal patient—something I wished she had never experienced—is the professional side of the story. I only hope my knowledge and abilities made the last year of her life easier. This is truly Evelyn’s story, one she shared with our family, my students and me. Evelyn had not had an easy life. Her husband died suddenly in his 30s when their five sons were between the ages of 11 and 2. She distrusted the medical establishment and rarely visited a physician or dentist during her 74 years. In the fall of 1997, Evelyn realized that her ability to care for herself had decreased to the point where she wanted to move into a home for the aged. Her choice was the Sacred Heart Home of the Little Sisters of the Poor, where she moved in the spring of 1998. In the fall of that year, I took a group of 10 junior nursing students to the assisted living units in Sacred Heart Home to gain clinical experience in long-term care. My students met Evelyn one day as she was walking the halls of the home. One of the students even gave her a routine tuberculin skin test as part of injection training. I stopped by to see Evelyn one day after clinicals and found her disoriented to time and place. She called me “Pat” instead of Sue and did not recognize anyone who came to check on her from the home. Her blood pressure was 200/120, greatly elevated for her. Evelyn’s medical history was routine, with the only significant entry being petit mal seizures, for which she was taking Dilantin (phenytoin). I comforted, dressed and transported Evelyn to her local doctor where, upon her arrival, she began having almost continuous seizures. We took her to the hospital, where stat labs revealed a potassium level of 7.4, BUN (blood urea nitrogen) of 69 and creatinine of 7.0. Evelyn’s last laboratory tests had been within normal limits. The renal failure was a new diagnosis; we had no idea she had renal disease! During a two-week hospital stay that included numerous consults with nephrology, hematology and neurology, she was diagnosed with chronic renal failure due to probable glomerulonephritis in her past, thrombocytopenia of unknown origin and her petit mal seizures. As a former dialysis nurse and renal CNS, I was distressed that I had not noticed the signs and symptoms of chronic renal failure that Evelyn had experienced for six months. She had complained of lack of appetite, fatigue, insomnia and itchy skin, and I had noticed that she was somewhat depressed and had lost weight. I had attributed these symptoms to aging and her move to Sacred Heart Home, not unusual symptoms given her life situation. She had even complained of a sore back several months before—she thought she had pulled a muscle moving her furniture. Hindsight, of course, is always the best sight of all, and I reminded myself that, in daily conversations with Evelyn prior to the diagnosis, I was the daughter-in-law, not the renal CNS. Little did I realize the professional nurse in me would be sorely tested over the next few months and, at times, be in conflict with my caring daughter-in law role. Evelyn became fully immersed in the health care system. She required seven more hospital emergency room visits or admissions over the next four months. Each time I either took her or met her, as I was the primary historian or person responsible for her travel and support. Each week, my students would ask in post-conference about Evelyn. She became a weekly, continuing case study of multiple self-care deficits and nursing interventions. Her renal disease helped them learn symptoms, lab values and treatment options. Having an actual patient with which to correlate pathophysiology, Orem’s nursing theory and nursing interventions was very helpful in learning. Each week, the students and I would have something different to discuss. Before starting hemodialysis, Evelyn was sent to the emergency room with a potassium level of 6.6. Consequently, the students learned about insulin and D50 IV to lower potassium. They learned that a low platelet count—50,000—can cause a patient to bleed for four hours postoperatively after a Quinton catheter insertion. The students learned that an episode of chest pain during dialysis could be due to masked pneumonia when the patient is on high-dose steroids. Those same steroids can also cause a person with a sweet disposition to have angry outbursts and mood swings, which Evelyn exhibited. And they learned that sometimes multiple specialists—in Evelyn’s case, a hematologist, a vascular surgeon and a neurologist—must all be consulted and seen before a routine fistula insertion surgery can be performed. Another incredible learning experience for the students occurred after Evelyn’s fistula surgery. I walked into her room when she returned from recovery and found her angry, actually yelling. The nephrologist, who had just left the room, had told her she had to have an extra session of dialysis because “she wasn’t following her diet.” Her potassium was elevated again, so he accused her of eating the wrong foods. (This was a physician who was difficult to reach when needed.) Evelyn could have taught a course on dietary management herself, as she was one of the most compliant patients I have ever seen with regard to diet. I looked up at the bag of IV fluid—the educated nurse in me—and saw it had 20mEq potassium added to the 500 cc bag of D5W. The nurse caring for Evelyn walked in at that moment, saw the bag, said “Oh, my!” and promptly stopped the infusion. We both knew renal patients should never have potassium added to an IV. At Evelyn’s request, we switched to a different nephrologist, but her distrust in the health care system was reaffirmed, and she remained angry at hospitals and physicians until her death. Evelyn’s last two months of life were spent going to dialysis three times a week, seeing a physician of some specialty or another at least every two weeks, and being admitted to the hospital three more times. Because for her I had begun to represent the health care system—I was the one the sons turned to as liaison for health care—Evelyn developed anger toward me the last few weeks. As is often true, the nurse in the family becomes the primary caregiver and gatekeeper. Although my husband and colleagues listened and provided support, my love for Evelyn and my knowledge as a nurse created many conflicting moments for me. The nurse in me questioned when Evelyn would say she had endured enough. The daughter-in-law in me wanted to have Evelyn around to share life with for more years. When I attempted to discuss advance directives with Evelyn, she would only say she did not want to be on a respirator, but during her last admission to the hospital, she decided she wanted to stop dialysis. Not only did she have chronic renal failure, seizures that now needed two anticonvulsants to control and heart block that required the insertion of a pacemaker, which she refused, she had finally been diagnosed with thrombotic thrombocytopenic purpura. (Remember the low platelet count?) By that time, my students had moved on to their next clinical rotation, so the teacher was silent for now. The daughter-in-law took over as I helped Evelyn, together with the family, make the decision to stop dialysis and go home to the Little Sisters, where she had four wonderful, love-filled days. Each family member and friend visited her, and the Little Sisters of the Poor and their nursing staff cared for her. She died quietly in her bed early one morning. So much emotion is present as I write this story. I chose to write Evelyn’s story, for it is more her story than mine, for several reasons. I wanted to share the case study she provided my students and, in so doing, help educate other nurses and nursing students about renal nursing and the process of a chronic illness. I also wanted to emote what I feel. Evelyn has now been in Heaven, as the Little Sisters refer to death, for more than seven years, but I still have days when I miss her presence in my life. I also needed to put Evelyn’s life and death in perspective as part of my own healing. May she be at peace, and may she know how her life touched so many people in ways she never planned, through her story and mine. RNL Sue Idczak, RN, PhD, associate professor in Lourdes College School of Nursing in Sylvania, Ohio, is director of the school’s master of science in nursing program. |
