Hope Is Palliative

“May I call you?” our mother asked via text message. It was Black Friday—a day when the masses awaken early, descend on stores in droves, and search for bargains. I asked if we could talk later. “Ok, just wanted to ask you about Gram. She’s very yellow today.” We discussed this change in appearance by telephone. Our elderly grandmother was battling a viral infection and later developed a skin rash, so we hoped for an autoimmune hemolytic anemia or other benign cause of her painless jaundice. Those two words, a verbal “one-two punch,” invoke doom in anyone familiar with them, given their association with advanced pancreatic cancer and its poor outcomes. In the emergency department later that morning, a computed tomography scan revealed a mass growing in the head of her pancreas. Hospital admission was arranged, and additional imaging was ordered. A young gastroenterologist, consulted to obtain tissue, suggested the possibility of a diverticulum instead. He explained this could become filled with food and compress the biliary system. Evaluation via endoscopic retrograde cholangiopancreatography (ERCP) was suggested for diagnosis. The ERCP was performed the next day and confirmed the presence of a mass. Brushings were obtained, but the physician, impressed by the endoscopic findings, diagnosed pancreatic cancer shortly after the procedure was complete. Unfortunately, we were told, no aggressive treatment options were available. Within 24 hours of admission, the palliative care service was consulted, and discharge planning began. The palliative care team was a single physician who had worked previously as a general surgeon. After reviewing the images, he was not convinced of the inevitability of death. He suggested that the disease was localized to the pancreas and urged our family to seek the opinion of an experienced surgeon. Desperate for hope, we embraced this uncertainty. Arrangements were made for a second opinion at an academic medical center 100 miles from our home. An endoscopic ultrasound scan would be performed in the morning, the case would be discussed at a multidisciplinary tumor board, and then the surgeon would share the recommendations in the afternoon. “Too much to text but not bad news.” The ultrasound scan was complete. The expert endoscopist suggested that autoimmune pancreatitis, a nonmalignant entity that mimics pancreatic cancer, might be the culprit. Instead of surgery, radiation, and cytotoxic chemotherapy, she would be expected to recover with a short course of steroids. Overwhelmed by this benign possibility, our mother leaped from her chair and hugged the attending gastroenterologist. The fellow-in-tow, surprised by this unexpected outburst, cried. Laboratory tests were ordered for autoimmune pancreatitis but ultimately returned negative. The surgeon outlined the risks and benefits of a robotically assisted Whipple. His optimism was clear: the intent was to eradicate all disease—to cure. The surgery was scheduled for the last week of December. Over the holidays, our family converged in snowy northwestern Pennsylvania from warmer climates thousands of miles away. A preoperative positron emission tomography scan was negative, and the plans for surgical resection were confirmed. Our grandmother made the holiday meal and, on Christmas day, served lasagna and dipped Italian Wedding Soup as she had done for years. We relished each other’s company and chatted for hours; all of us content to ignore the 800-lb gorilla. After the leftovers were eaten, and the dishes were washed and put away, the out of town visitors began to leave. We wished her luck with her surgery instead of saying goodbye. The lone update came in the form of a group text message: “Everything still quiet. OR nurse Nancy just stopped by to say they were still going. Doctor very intent on what he is doing. Still maneuvering robot. Lots of soft tissue to get through. Probably be until dinner time before he’s all done.” Shortly before supper, the surgeon emerged from the operating room, convened the family, and declared the operation successful. In the days that followed, she walked with physical therapy, used the incentive spirometer, and ate meals. After 2 days, she left the intensive care unit and, on postoperative day 7, was discharged from the hospital. She had exceeded everyone’s expectations. The pathologic report showed locally advanced pancreatic adenocarcinoma with 1 of 13 positive regional lymph nodes and negative surgical margins. Chemotherapy could be considered and would boost the chance of cure. If ever there was a time to be hopeful, it was now. “Hi love…. You up yet?” read the pre-7 a.m. text messages from our mother. In the telephone calls that followed, we learned that our grandmother had died early that morning, less than 2 weeks after hospital discharge. She had had a sudden onset of back pain and chills followed by irregular breathing. Was it a pulmonary embolus? A myocardial infarction? An infection? The possibilities seemed so academic and so trivial. It was over. This new development was difficult to accept after she had done well with surgery and was cured (or nearly cured) of her disease. In our zeal to hope for the best outcome, had we overlooked the risks inherent to a major operation? In retrospect, the surgeon’s confidence as he described the curative operation left little room for us to be dubious. The risks seemed miniscule compared with the consequences of withholding curative therapy in the setting of an aggressive cancer. Refusing surgery meant accepting death, an option we admonished weeks before when we left the community hospital. The stakes were high, and we agreed to move forward. For us, proceeding meant a transition from health care providers to health care consumers and anxious family members. In this new role, we came to appreciate that the path to cancer survivorship, although well-trodden, is not easy. Patients who elect to receive curative therapy must also consent to the risks associated with it and accept its long-term physical and psychological sequelae. Even with the best medical care, delivered under the most favorable circumstances, cures are not guaranteed. When remissions vanish and cancer relapses, particularly in elderly patients, some might question the appropriateness of aggressive therapy over less intensive measures. In light of our grandmother’s unfavorable outcome, several of us were left questioning whether our decision to pursue aggressive therapy was appropriate. After careful consideration, we recognized that adopting a curative approach to our grandmother’s cancer improved her quality of life during the final weeks. Although this strategy conflicts with prevailing views on resource allocation and end of life care, it allowed our grandmother and our family to look forward to a life after cancer. Surgery and chemotherapy meant that she would be a part of future family gatherings, enjoy a few more Sunday mornings, and savor the warm days of spring after the long winter. For our family, too, the surgery represented hope. It was the difference between wishing her well with surgery instead of saying “goodbye” over the Christmas holiday. There was never a need for hospice. Although selfish, we were relieved not to witness the natural history of pancreatic cancer unfold in our loved one. Her death, although unexpected, was brief and painless—for all of us. From the palliative care physician to the endoscopist and surgical oncologist at the tertiary academic center, the hope we were given was a much more potent form of palliation than any medicine or surgery. It allowed us to view the diagnosis as an obstacle that could be overcome. Death was once again allowed to slip into the realm of uncertainty, and we enjoyed our time together. Although limited, this was time spent unencumbered by a deadly disease. As providers, many of us can recall discussions with our patients and their families in which we have tried to paint a grim picture in the setting of a poor prognosis. In oncology, these are the patients with progressive, widely metastatic disease after third- line chemotherapy and those with leukemia refractory to salvage chemotherapy. Outside of oncology, these patients are a heterogeneous group: those with end-stage heart or liver disease, patients with progressive, irreversible cognitive decline, and individuals who are poor candidates for optimal therapies. Should not these patients and their families, despite their poor prognosis and impending death, have hope? And hope for what? Hope for a spontaneous remission or cure? Hope for a miraculous response to a new therapeutic agent? “Having hope,” as one patient recently said, “beats the hell out of sitting around thinking about dying.” When we talk with our patients and their families about an illness and its likelihood of cure, let us endeavor to be honest, but careful not to eliminate hope. Having been on both sides of the disease, we now recognize that hope has a very poignant palliative value.