This proposal is submitted for a first award (R29). In recent years, the way that people die in the U.S. has attracted growing public concern. As suffering cancer patients increasingly request assistance to end their lives, some argue that too little attention is paid to the quality of life in the final months. Voters in some states have sponsored referenda on the right to end one's own life when gravely ill, although the 1997 Supreme Court ruled against the right to a physician-assisted suicide. Nonetheless, those continuing to lead public calls for more individual control over the dying process have frequently been cancer patients who describe uncontrollable pain or other intolerable symptoms. Relatively little is known about the quality of the dying experience for cancer patients, especially from the patient's perspective, or about patterns of care used during the final months of life. The overall goal of this study is to describe the dying experience of cancer patients, focusing on specific types of care, the resources consumed, and whether that care complies with a patient s preferences. The project will use two complimentary databases to achieve this goal: 1. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) database, and 2. The Surveillance, Epidemiology, and End Results (SEER) program database. Both databases have been merged with Medicare claims data for patients older than 65 years. The proposed study will be conducted in four overlapping phases, each with its own specific aims. Phase one will describe the dying experience of the seriously ill lung and colon cancer patients, including preferences for care. Phase two will describe patterns of care for cancer patients at the end of life. Phase three will examine the nature and intensity of care received at the end of life. Phase four will describe variations in end-of-life cancer care across place and time. This study will provide an in-depth description of the quality of the dying experience for selected cancer patients, and a better understanding of where cancer patients receive care during their last six months of life, the intensity of nature of their care, and whether patients' preferences for care are being respected. Information obtained from the study can be used to improve the quality of care for patients at the end of life and help to determine the nature and amount of resources that might be required to meet patients' needs.
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