Guidelines are never enough: a commentary on "when guidelines are not enough".

The clinical vignette presented by Dr Robert J. Weil will likely evoke widely disparate reactions from readers. Some will laud him for listening to his patient, Cheryl, and helping her achieve her limited goals, whereas others will believe his decision to operate demonstrated rather questionable clinical judgment. As physicians, our primary duty is to do what we think is best for each patient based on our professional experience and the available evidence in the medical literature. In doing so, we must keep in mind that statistics and medical evidence do not necessarily apply to any single patient and that there is substantial medical uncertainty regarding individual outcomes. Weighing potential risks versus potential benefits is rarely as objective as we might wish. For these reasons, one might argue that guidelines are never enough to direct appropriate care. In clinical oncology, many management decisions are based largely on clinical judgment because of the lack of specific, high-quality evidence. It is primarily for this reason that the most widely used guidelines, those published by the National Comprehensive Cancer Network (Jenkintown, PA), are not truly evidence based, but are “a statement of consensus” of experts in the field. In light of this, Dr Weil’s statement that surgery is “not indicated” for patients like Cheryl may not be as absolute as it sounds. Yes, the literature and guidelines primarily recommend radiotherapy for patients with one to three brain metastases and extracranial disseminated disease with poor systemic treatment options. However, some experts do maintain that surgery is an option for symptom palliation in patients with significant neurologic dysfunction. Given that the care of each patient must be individualized, it may be useful to explore the whys and why nots of this particular situation and how they might apply to the broader context of oncologic care near the end of life. Why? Dr Weil never addresses his personal rationale for proceeding with surgery. It is tempting to accuse him of acting on emotion rather than sound medical principles, particularly in light of the relative youth of his patient. However, on further assessment, his decision can be supported by rational oncologic reasoning. The primary goals of care for patients with incurable diseases are to optimize quality and quantity of life. In Cheryl’s case, nothing was going to prolong her life, and the neurologic sequelae of her brain metastases were severely impairing her quality of life. Corticosteroids resulted in only mild improvement, and radiotherapy was unlikely to do much more within the time frame of her expected survival. Surgical resection of the brain lesions represented the best, and perhaps only, chance to significantly improve her quality of life in a timely manner. Everyone, including Cheryl and her husband, knew that she was going to die soon. This was not a case of delusional denial and unrealistic expectations. The limited goal of treatment was clear to all. But does the potential benefit outweigh the potential risk? We tend to ask this question only in the context of medical interventions, but it needs to be applied to all options being considered, including nonintervention. Brain surgery obviously carries risk, but modern neurosurgical techniques have remarkably decreased these risks over the past 20 years. Cheryl’s rapid recovery was not an anomaly. In this situation, the risk of surgery may be acceptable when considered against the risk of nonintervention, that she would remain in her debilitated state, unable to enjoy her remaining time with her family. As the risk of intervention improves, the concept of aggressive palliative care becomes more appealing and rational, particularly for those in whom quality of life is severely impaired by a potentially reversible and localizable lesion. Why not? Dr Weil ends his vignette with a thought, initially introduced by his patient, that must have resonated deeply within him. It is a thought we have all fallen back on at times to justify our clinical decisions to ourselves or to others: Why not? Frequently, this question is asked in a rhetorical manner, with no expectation of contrary response. Yet, there are many valid answers to this question, both in regard to this individual case and in the greater context of our health care system. Dr Weil himself raised many of the reasons not to operate during his initial discussion with Cheryl: progressive systemic disease, the lack of supportive evidence, the From the Division of Hematology/Oncology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI.