There is ample evidence that patients who are dying have symptoms that devastate them and consume their families. Many patients experience needless pain that could be controlled by the optimal application of existing therapies. Others experience fatigue, cognitive deficits, depression, physical wasting, and other symptoms that are poorly understood and less easily managed with current treatments. There is a need for a broadly based strategic plan for research in this area that will integrate health services research in the improved delivery of distress management with basic and clinical research that develops new therapeutic strategies. New and existing methods of distress management must be tested clinically for their effectiveness to provide for evidence-based practice recommendations.
Compared with the rest of the cancer research establishment, research directed at cancer-related distress is poorly organized, poorly conceptualized, underfunded, and dependent on an insufficient number of well-trained researchers. Increased organizational and public recognition of the suffering that often dominates the end of life for cancer patients has created an opportunity for a sympathetic response to new proposals in this area. New information in cancer biology and neuroscience could be applied directly to alleviating distress if researchers could be encouraged to recognize and explore potential linkages of information.
The types of research that are needed to improve care and reduce distress at the end of life fall into three major categories:
descriptive and epidemiologic studies that define the specific needs of patients and caregivers, determine the prevalence and severity of the symptom-generated distress that they experience, and point the way to additional investigation of the causes and potential treatment of this distress;
studies of the specific symptoms that patients experience and the treatment of these symptoms, primarily from biomedical and behavioral perspectives; and
studies of the delivery of care to these patients and ways to improve this care by the optimal use of existing treatments.
This broad research agenda depends on a wide range of investigators and methods, and its performance will depend on a creative combination of funding from different sources as well as the development of a larger group of researchers interested in and trained to deliver the kinds of research needed.