ATC is a rare, rapidly growing and [usually] fatal disease. Few physicians have personal expertise, and the published literature tends to be of low quality. Thus, when a patient presents at their doorstep, unfamiliar physicians are ill equipped to manage the disease.
The ATA brought together experts from a range of disciplines that synthesize the published literature and combine it with their clinical experience to thoughtfully guide physicians through the complexities of an ATC diagnosis, evaluation, staging and the establishment of treatment goals. This latest endeavor includes disclosing the patient’s status in a realistic way, including a discussion of treatment risks and benefits, the discussion of patient values and preferences, and the eventual making of an informed decision.
Unfortunately, physicians see patients in their best condition at the time of the first appointment, as most patients with ATC progressively decline in health and die from the disease in less than 6 months. Therefore, important decisions are needed quickly to address the remainder of their life. The document includes important sections of surrogate decision making, truth telling, advanced directives, airway management, maintenance of nutrition and palliative care/hospice.
This is the first set of comprehensive guidelines on this topic, and Dr. Smallridge and the ATA Task Force are to be congratulated for creating such a thoughtful and extensive document. Readers should quickly appreciate that to treat these patients they need to have an awaiting comprehensive multidisciplinary treatment team on-site to receive such patients, in addition to a group that can review this document to discuss their institutional approach moving forward. Conversely, physicians need to know how and where to rapidly transfer patients into the care of such a team.
Historically, guidelines have improved patient care in the short term by educating physicians and guiding patient care. In the long term, guidelines improve patient care by driving research. Gaps in the medical literature are identified and disagreements over strategies can be appropriately studied to strengthen the evidence base and to change patient care. We all hope that this is the case for ATC, and this document sets the benchmark for optimal care in 2012.
Richard T. Kloos, MD
Senior Medical Director (Endocrinology)
Disclosures: Kloos reports no relevant financial disclosures.