This proposal responds to PA-98-021, Research Objective Number 12: Death and Dying - Research on understanding the role of family, care providers, and relevant social institutions upon decreasing the trauma and difficulty of end-of-life decision. The Principal Investigator, Frederick J. Meyers, M.D., is an established investigator in cancer clinical trails and molecular biology. This proposal is a change of focus for his research to aging and end of life issues. Trauma and distress at life's end are well-documented. Reducing this trauma should produce a patient experience that integrates death into the life cycle, help align health resource utilization with anticipated disease course, enhance adaptive survivorship for loved ones and provide for smoother, less traumatic transitions from disease-directed therapies to palliative ones. The proposal has four specific aims.
In Aim One, the project will examine the relationship between coping style, distress, and extent of cancer-related knowledge, and the role that each plays in selection of treatment options, including palliative care.
Aim Two will measure whether patients with more information regarding their disease, prognosis and treatment options experience less distress (trauma) over decision making as their cancer progresses.
In Aim Three, the project will estimate the effect of patient demographics and characteristics on resource utilization.
Aim Four, as a result of the first three aims, will use the baseline data to develop a methodology for a planned RO1. A set of 400 - 500 newly referred patients will be assessed at their initial visit using select, validated quantitative measures, creating a baseline measure of coping styles, distress experiences and knowledge-seeking behaviors. A subset of 30 patients with advanced disease will be followed longitudinally for six months. Additional validated quantitative measures will be augmented with qualitative inquiry at regular intervals. Collateral data will be gathered through provider interviews and chart review. A profile of patient distress as disease progresses and end-of-life decisions are made should emerge. Enhanced understanding of the relationship between coping style, disease-related knowledge, age and adaptation to disease progression for patients and loved ones will facilitate design and trial of future trauma-reduction interventions, with application to most late-stage disease states.
