In 2008, I began gathering information for my clinical recognition portfolio. Included in this is a narrative about a patient that had recently made an impression. Here is my story:
I dialed the telephone number and asked to speak to the nurse who was currently taking care of ZZ. I quickly learned that ZZ was getting transferred to Massachusetts General Hospital after being newly diagnosed with acute myeloid leukemia (AML) and failing 3 cycles of induction chemotherapy. In fact, his disease continued to grow through the intense treatments. ZZ also had new episodes of fevers, noted as high as 104.6 since he was neutropenic for so long and unable to fight off infection. Our initial goals for ZZ was to locate a source of infection, monitor fevers, assess his disease load and initiate a new plan of care. ZZ is 51 years old gentleman and was given a very poor prognosis.
I followed the stretcher that ZZ was riding in when he arrived to the floor. I assisted him to his room and began my initial assessment. Some may be surprised to learn I did not pull out the admission paperwork packet to complete quickly, didn’t take out my stethoscope to take vitals, and I didn’t start educating ZZ about neutropenia precautions or leukemia. Instead, I shut the door to his room and pulled up a chair. The foundation of our relationship was being created.
I introduced myself and ask ZZ to tell me a little about himself. When all he did was stare back at me, I started asking questions about his family, his residents and what I could do to make him comfortable. After adjusting the room temperature and getting him a bottle of water as asked, I then began to ask him about his disease and his current plan of care at the outside hospital. I was very upset to learn that ZZ was unable to tell me his recent plan of care. He in fact thought his fevers were related to having socks on his feet and his fatigue was because he didn’t sleep well the night before. These complaints are two very hallmark signs of leukemia. As ZZ starting going into great details about how the socks he was given by the other hospital had produced his fevers, I began to correct ZZ in stating his fevers were more likely due to an infection in his body. I started by explaining how his body would not respond “normally” because his lack of an immune system from the chemotherapy he had received. As I was trying to education ZZ about the body’s natural response to infection and how his body differs, he started avoiding eye contact and would interrupt our discussion or change the subject. I redirected the conversation to the original topic about infection and fevers and he instantly closed his eyes and pulled the blankets over his head. He would not answer my questions or even acknowledge my existence. He was done talking to me. I was good as dead to him.
I now felt the relations hip I made with ZZ so quickly when he arrived was now non-existent. I had to prove I was working with him instead of against him. I knew at that time I was not going to be able to get any information to or from him. I restated I was available at any time and to ring the nurse button if he needed me. I assured him I would be back in 20 minutes to continue talking with him if he did not call. In those twenty minutes I had to initiate a plan that would make our relationship trustworthy again.
I walked back into his room and our eyes met. He began to make the initiative to ask many questions about his plan of care, hospitalization, infection and fevers. I sat down and began rambling off information in case he changed his mind. I tried a different approach with presenting information. One significant change I made was using the word leukemia instead of disease. It’s easier to hear the word disease and think of it as something temporary or not life-threatening. The word cancer makes someone realize this is going to be a long tough battle that you have to be willing to fight against: physically as well as emotionally. The first time I said, “ZZ, we are having a hard time getting rid of your leukemia”, his eyes filled with tears and his head fell with sadness. I knew he now understood what I had been trying to say all this time. I picked up his hand and continued “but the reason why you are here is because we are going to help you fight against the leukemia. We want to help you fight”. He looked up at me and could only say “Thank you”. My relationship with ZZ had been restored.
ZZ was getting tired of the tests and the endless amounts of people coming in to exam him and “offer their services”. I assured ZZ at the beginning there would be many people coming to see him and to have patience with the repetitive questions. After doing my head-to-toe physical examination, the intern came in followed by the attending. They gave the same instructions to take a deep breath in and out followed by a series of questions about pain, his bowels and nausea and/or vomiting. After the examination was over, they each asked him the famous statement, “So how are you today?” His reply, “You tell me!”
ZZ had many other issues besides his recurrent leukemia. On exam his mouth was noted to have a necrotic ulcer located on the roof of his mouth along with many lesions testing positive for herpes. Because our only treatment for ZZ was to undergo an allogenic stem cell transplant in a few weeks, we had to make sure his open lesions were not current infections which could be responsible for his high fevers. We had consults with Dentistry and Transplant Infectious Disease the following day. Infectious Disease was very concerned with his ulcer and wanted an oral surgeon to biopsy the lesion and send for gram stain, culture/sensitivity and fungal culture. Dentistry had no interventions and OK’d him for transplant.
Even though the questionable necrotic ulcer in ZZ’s mouth was a concern, it was not most important to ZZ. The ulcer in his mouth was painful and could be a major problem in his treatment, but ZZ’s mind was more focused on the concerns of paying his bills on time, his family’s ability to cope with his diagnosis and possibility of losing his life.
ZZ had stated earlier in the day “he was not religious”. In talking more to ZZ, I found out he found comfort and strength by just vocalizing his thoughts, concerns and problems. He also informed me, he was having a hard time talking to his family and friends he would normally talk to when times got tough because they too were dealing with his new diagnosis and grim prognosis. He felt if his family new all his fears during this hard time, he would only be adding to their anxiety and increase their panic. After talking with ZZ we agreed it would be best for Social Work and Chaplaincy to be consulted for these several reasons.
Social work was able to provide ZZ’s family with resources to help cope with a sick family member. They also meet with ZZ’s girlfriend educating her on the responsibilities of paying the bills, since ZZ was solely responsible for this task before. Meeting with chaplaincy provided ZZ with a sense of comfort knowing he could say anything and know he was not burdening them emotionally. This provides ZZ with a sense of well-being and allowed him to keep a positive attitude.
To restate, the moment I finished receiving report over the phone, I knew ZZ was a sick man. He had multiple issues including his recurrent leukemia, an unidentified source of infection, an intracranial bleed, depression, transfusion dependent and had uncontrolled pain. I was able to quickly address those significant medical issues, however keeping in mind that ZZ needed emotional support. His ability to relax, obtain a peace of mind and able to vocalize his concerns helped facilitate in his overall well-being and renew his hope. I made the decision to initiate supportive services the day of admission to enhance his healing process. He has faith in me and our relationship, and therefore has faith in finding a cure to his very aggressive leukemia.
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