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The shortage of scientific knowledge reflects a lack of clinical interest in high-quality palliative care, interest that would serve as a powerful stimulus to research. The committee argues that caring for dying patients can be personally rewarding and intellectually challenging. It demands that clinicians learn and apply a wide variety of skills and knowledge. For example, effectively balancing the benefits and adverse effects of multiple drug therapy in a metabolically compromised patient is clearly a complex and exacting task. Dying patients are not people for whom "nothing can be done" either now or in the future . Basic biomedical research into the pathophysiology of symptoms and mechanisms of symptom relief—following the model used in pain research—provides a promising foundation for improved patient care and a tighter focus for clinical research on care of patients likely to die.
This chapter focuses on directions for extending the knowledge base for effective, reliable care at the end of life. Unlike other chapters, this chapter uses certain technical terms that may not be understandable to some readers; it does so in an effort to underscore research gaps and opportunities. The following sections consider a symptom-based strategy for biomedical research, directions for behavioral and health services research, ethical issues in research involving dying patients, some important methods issues in end-of-life research, and barriers to research and consequent opportunities for leadership from the nation's research establishment. Although the committee recognized the methodological, ethical, and economic difficulties that can complicate end-of-life research, it did not believe that these problems are insurmountable if leaders recognize the relevance and promise of symptom and other research intended to help reduce suffering at the end of life. Such leadership would help attract more bright young trainees who could readily master the techniques required for the conduct of that research, both in the laboratory and at the bedside.
A Symptom-Based Strategy For Biomedical Research
Earlier chapters of this report have described the symptoms that cause significant distress for many dying patients. Although deficits in the use of existing knowledge need to be corrected, it is also important to extend the base of knowledge about the pathophysiology of symptoms and the mechanisms for symptom relief and prevention. Pain is the most widely noted and feared symptom and has been the subject of an active and productive research strategy. This report particularly challenges the biomedical research community and its supporters to direct new intellectual energy to better understanding and countering the mechanisms of other physical and emotional consequences of advanced diseases (and treatment side effects),