The notion that the distress of cancer patients at the end of life, and also throughout the spectrum of their disease, is a topic worthy of serious research is relatively new. Public support for this kind of research has grown for several reasons, including increasing knowledge of the widespread nature of the severity of this distress, increasing consumer demand that quality of life is a legitimate issue, and the public debate over end-of-life decisions and assisted suicide. There is also an increasing expectation that the control of pain and other symptoms and at least some aspects of suffering should be included in what medical care has to offer, should be a right of patients under the care of the health system, and should be a competency of their health care providers.
This increasing expectation of and support for better management of the distress of cancer and of dying with cancer has created a condition that is in some ways like the emergence of a new disease. Systems are not prepared to deliver the care required, the biology and behavioral aspects of the disease have to be understood, existing treatments have to be tested to see if they are effective, and new ones must be proposed and tested. When a new disease emerges, there are few if any providers competent in its management, and the funding components of the health care system are not prepared to finance its treatment. The research required to understand its biology, its behavioral ramifications, and the best way to treat it is not in place, and investigators have to be attracted to the area, develop appropriate methods of research, and be funded to carry out the requisite research.
While the new disease analogy may be helpful to explain the demand for new types of research, there are special characteristics of the needed research that makes it hard to conceptualize, to organize, and to fund. Some of these special difficulties include
the subjective nature of many of the measurement and outcome variables,
the poor fit of current disease models of research for doing this type of health-related investigation,
the lack of an organizational structure for responding to this type of research demand,
the high level of interdisciplinary research that is required to do the work, and
the absence of a high-priority pathway for putting this type of research in place.
This review offers examples from two areas of research that are critical to the delivery of better end-of-life and symptom control care: