PATIENT PREFERENCES ABOUT END OF LIFE RESEARCH

University Of Pennsylvania, Philadelphia PA

Investigators

Abstract

DESCRIPTION (Applicant's Abstract): Dr. David J. Casarett, a Fellow in Palliative Medicine at the University of Pennsylvania Medical Center is applying for a Mentored Research Scientist Development Award in Research Ethics in order to develop and enhance the skills to become an independent investigator and national resource in research ethics. The candidate's research interests focus on assessing patient preferences about end of life research. This application requests support for a career development program that will include didactic course work, mentoring, and a program of mentored research that will generate important data about the way that patients near the end of life perceive the risks and benefits of research that may involve them. Increasing attention has focused on end of life care and symptom management, but it has become apparent that few data exist to guide clinical treatment decisions. Research to provide data is needed. However, this research involves patients near the end of life who may be unable to protect their own interests because of severe symptoms, cognitive impairment, depression, or dependent relationships with investigator/providers. Therefore, while this research is necessary, it creates significant ethical challenges. In order to protect these vulnerable patients, scrutiny of the risks and benefits of end of life research is necessary. However, it is not known how patients near the end of life perceive the risks and potential benefits of this research. This application proposes a 5-year program of mentored research and scholarship that builds on preliminary work to assess patients' preferences regarding end of life research. Dr. Casarett proposes that understanding these preferences will assist investigators in two ways: 1) Investigators will be better able to meet the informational needs of prospective subjects; and 2) Investigators will be able to incorporate these preferences into the design of clinical research. The first project proposed is a semi-structured interview study, the principal aim of which is to define the risks and benefits that are important to patients near the end of life. The second project will assess patients' informational needs regarding these risks and benefits. The third and fourth projects will survey researchers and patients to define and compare preferences about specific risks and benefits in the setting of palliative pain trials. By year five of this plan, Dr. Casarett will have established a foundation of substantial research into patient preferences regarding end of life research, and will have acquired the skills to compete successfully for further funding in the form of a R01 award.