The Art of Medicine: Our Role As Patient Advocates

DOI: 10.1200/JCO.2012.43.1908 For the last decade, I have traveled monthly to Juneau, Alaska, to see patients who have oncology or hematology problems and are referred to me by their primary care provider. Although Juneau is Alaska’s state capital, it is located in southeast Alaska and is surrounded by mountains, glaciers, and the sea, so it is accessible only by boat or a 2-hour flight from either Anchorage or Seattle. The medical community of primary care providers in Juneau is strong, but the population of only 31,000 precludes the full-time presence of many medical specialties, including oncology and hematology. In collaboration with the local medical community and hospital, we can treat patients with many hematologic and oncologic diagnoses in Juneau, but conditions that require intensive supportive care or complex multispecialty care necessitate transfer to Anchorage or to the lower 48 states, most frequently to Seattle. The following story will sound familiar to most of my medical colleagues, but I thought it nevertheless remarkable and indicative of some of the issues that we face daily in serving our patients. Recently, on the first of my three heavily booked clinic days in Juneau, I received a call from a local family physician about a patient who had been found to be pancytopenic during a preoperative evaluation before spinal stenosis surgery. Despite an already full schedule, I asked the office staff to add him on at the end of the day. The patient appeared to be the picture of health, savefordocumentedslowprogressionofpancytopenia over the preceding 3 months. The diagnosis was not obvious, so a marrow examination was needed. The office staff worked diligently and uncomplainingly behind the scenes to rearrange my schedule for the second day in Juneau so that I would be able to perform the marrow biopsy that afternoon. The only time that the procedure could be shoehorned into the calendar would be just a little too late to meet the deadline for the daily courier who takes specimens from Juneau to Seattle for special studies, so the samples would not go out until the following day. That would have to be adequate. The next day, additional laboratory data were returned. The only other abnormalities were a markedly elevated D-dimer and a borderline low fibrinogen level, which suggested disseminated intravascular coagulation.Butwhy?ThenIrecalledthat thepatienthad a digital papillary adenocarcinoma of the finger resected 5 years previously, and I wondered if he might now have metastatic disease in his marrow. The bone marrow biopsy went well and was completed quickly, and the technologist rushed up to the laboratory in hopes of still catching the courier. The day after the bone marrow biopsy, I met the patient and his wife in the office (somehow that visit was also worked into my schedule). I informed them that, unfortunately, the initial marrow stain was not adequate to make a diagnosis, but I promised that I would keep track of the patient’s situation, although I was returning to Seattle that evening. I also told them that he might need care outside of Juneau. I learned thathehadbeenpleasedwithpreviouscare thathehad receivedat theUniversityofWashingtoninSeattle,but he had family in southern California and might prefer to go there if a longer stay was anticipated. The next morning, back in Seattle, I received a call from the Juneau hospital pathologist. A better stain of the marrow aspirate was suggestive of acute promyelocytic leukemia (APL), and that diagnosis had already been confirmed by the Seattle reference laboratory on the basis of immunohistochemical stains. (Yes, somehow the specimen did get to the courier in time to be flown out on the afternoon of the marrow examination!) As most readers of Journal of Clinical Oncology know, patients with APL have an 80% to 90% chance of cure if they start modern therapy in a timely fashion, but also a 10% to 30% chance of early death before or in the initial days of therapy, usually as a result of devastating thrombohemorrhagic complications. In fact, I have been involved as an expert witness in two recent Seattle-area malpractice cases in which a plaintiff family contended, with some justification, that a loved one died because appropriate therapy for APL was not initiated promptly. It seemed that the next steps would be relatively simple. APL is a medical emergency, so we needed to start the patient promptly on the medication that must be started quickly (all-trans-retinoic acid [ATRA]) to prevent the thrombohemorrhagic complications, and we needed to get him to Seattle to start definitive chemotherapy. JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 30 NUMBER 31 NOVEMBER 1 2012