Looking back from death: the value of retrospective studies of end-of-life care.

Cancer is projected to cause more than 570,000 deaths in the United States in 2005.1 As patients with cancer approach death, the issues they face are often similar regardless of the original site of disease. Important practice variation has been documented near the end of life, with inadequate treatment of pain and other symptoms,2 increasing use of overly aggressive anticancer treatments,3 and disparities in access to hospice services.4 As a result, the quality of end-of-life care delivered to patients who die as a result of cancer is a major public health concern.5 Two approaches have commonly been used to study the quality of end-of-life care. Many studies have retrospectively assessed the care received by patients in the time frame leading up to death,3,4,6 whereas others have identified patients entering the terminal phase of disease and prospectively observed their care forward in time.7,8 Each of these approaches has its theoretical and practical advantages and disadvantages, yet it has been suggested recently that retrospective designs are particularly biased and thus should be “laid to rest.”9 This sweeping recommendation, however, risks the loss of important opportunities to understand and improve end-of-life care in large representative cohorts of patients with cancer. (February 20, 2006)