John, a 37-year-old construction foreman, worked long hours to provide for his wife and their two young children. For the past few weeks, John had been experiencing some mild abdominal discomfort that curtailed his appetite, but not enough to slow him down. He noticed he had lost some weight and felt nausea from time to time, but was not concerned. One evening his abdominal pain was the worst he ever felt, and for the first time in his life went to the emergency room. He was worried he had appendicitis; it was the only illness he could think of that could cause such pain. His CT scan revealed a large mass in the head of the pancreas, and soon John would come to learn he had pancreatic cancer.
Upon meeting with an oncologist, he learned his tumor was resectable, and thus his treatment plan would be aimed for cure. This would involve a combination of surgery, radiation, and chemotherapy. It was a lot of information to handle quickly, but John trusted in his care team and soon started on the several month journey of postoperative recovery, radiation, and chemotherapy treatments. During this time, John was unable to work due to the burden of his appointments and the side effects of treatment. He experienced significant fatigue, nausea, and diarrhea. These symptoms often kept him from participating in family activities.
When his course of treatment was completed, John slowly began to feel like himself again and the pulse of his life returned. In five months time, however, he began to experience increasing fatigue and shoulder pain when lifting up his children, something he had never experienced before. Restaging scans showed that he had developed metastatic bone disease. It was explained to John that his disease was no longer curable, and that his prognosis may very well be measured in months. After an extensive discussion with his wife and oncologist, John decided to pursue palliative radiation for his shoulder pain followed by systemic chemotherapy. The radiation treatment helped with his shoulder pain initially, but once John began systemic chemotherapy, his symptom burden exploded. His pain returned and now involved his back and hips as well as his shoulder; he had significant nausea and diarrhea from chemotherapy and his fatigue kept him in bed most of the day. After four weekly treatments of systemic chemotherapy with resultant clinical decline, it was decided that John's disease burden was such that the risks of chemotherapy outweighed its potential benefits. It was at this time that John was referred to palliative care for pain, symptom management, and "end-of-life" care. He was enrolled in hospice within 2 weeks, and died within 5 weeks of his last oncology visit.
In 1990, the World Health Organization (WHO) began its definition of palliative care with "Palliative Care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and ...