AN EXPLORATORY STUDY OF THE ATTITUDES AND BELIEFS OF OLDER AFRICAN AMERICANS CONCERNING END-OF-LIFE PLANNING: A DEVELOPMENTAL PERSPECTIVE A Dissertation Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the College of Social Work of The Ohio State University By Evie L. Bradley, M.S.W. ********* The Ohio State University 2004 Dissertation Committee: Dr. Virginia Richardson, Advisor Approved by Dr. Keith Kilty Dr. H. Eugene Folden ____________________ Advisor College of Social Work Copyright by Evie L. Bradley 2004 ABSTRACT This descriptive and exploratory study, guided by a developmental framework, examined how the lived experiences of older African Americans, over the life course, informed their attitudes and beliefs concerning end-of-life planning. A focus group was used to pilot the study. Tape-recorded semi-structured face-to-face interviews were conducted with seven respondents using an open-ended questionnaire. Content analysis was accomplished utilizing grounded theory as an analytic framework. Following this analysis, six core categories emerged: (1) the experience of growing older; (2) coming to know death; (3) making sense of death and loss; (4) cognitive dissonance; (5) measured trust; and (6) race as a constant companion. The findings revealed that respondents had a positive attitude concerning the utility of advance directives, but a reluctance and ambivalence concerning executing them. Family centered decision-making and input were valued in end-of-life care and planning. These older individuals tended to look to their adult children to serve in the role of surrogate decision makers in the event of future decisional incapacity. There was a rejection of heroic medical care or technology in the face of futility. The respondents saw no nobility in pain and suffering and fervently desired effective comfort care in the event of terminal illness. Independence and productivity were most valued. Spirituality was at the core of how these older persons made meaning of death and how they found meaning and purpose in life. ii DEDICATION In loving memory of my late father, Edward Bradley, and late grandparents, Jossie Foster, Frank Foster, and Freddie Ashley, who valued education and taught me the morals and values that I now cling to. and In honor of my loving parents and siblings, Annie and Mathews Webster, Annie Pender, and Florence Jones whose love, devotion, and encouragement I cherish. *********** To those brave men and women who paved the way and cleared the path before me so that I could experience this day, I extend my humble gratitude. iii ACKNOWLEDGMENTS The list of individuals who gave support, encouragement, and guidance during my studies is simply unending, and acknowledging them in the allotted space parallels the challenge that is associated with writing a dissertation. I would like to thank my Advisor, Dr. Virginia Richardson, and members of my Dissertation Committee, Dr. Keith Kilty and Dr. H. Eugene Folden, who provided support and guidance during this very different kind of journey. I thank the members of the Veterans Affairs Outpatient Clinic staff, Columbus, Ohio, for their support, words of wisdom, and understanding during my doctoral journey. In addition, I wish to extend a gracious thanks to Ed Lee, Learning Resources Specialist, who was so supportive and helpful, assisting with literature searches, accessing references, and for showing such a genuine interest in my project. I thank my supervisors, Juanita Wilson and Judith Talbert, for their ongoing support. To members of the Community Outreach Division, I extend my gratitude for their continuous encouragement and faith in my ability to complete the project. I will always remember and thank Brooke Werner for the hugs that were intended to strengthen me when the dissertation challenge was almost overwhelming. I thank the 10 participants in my study for taking the time to tell their rich stories. Without their willingness to share their life stories, I could not have made it to the finish iv line. I am also grateful to my very close and loving friends who believed in me and kept me going—Lawanna Johnson, Cynthia Harris, Frances Rembert, Toni McCray, Joyce Craddock, Georgeann McCrary, Linda James, Dawn Smith, Elsie Capers, Sharon Watson, Jean Folds, Robert Chapman, Alex Bates, Marion Bannister, Cheryl Blakely, Phyllis Gooden, Carmen Greene, Michelle Cobbs-Martin, and William Simons. I give special thanks to Dr. Beth Kinsel, my friend and my anchor that was there for me from the beginning until the end. Thank you, Beth. Your friendship added another wonderful dimension to the journey. I thank Dr. Roenia Deloach and Dr. Jacquelyn Monroe for their positive outlooks, assistance, and unending encouragement. They truly believed in me. I thank Andrew Hoyt, a gentle, soft-spoken individual who must have marveled at my limited computer skills. Thanks for being there for me when I could barely maneuver the mouse. I thank my good friend Dr. Kwame Osei, a phenomenal scholar and scientist, for his steadfast support, his mentoring, for challenging me, and allowing me to extol the virtues of the qualitative method. I am grateful to my longtime friend Cliff Robinson for his continued interest in my project and the words of encouragement and support that he gave over the years. To my dear friend, Malvin Jones, I want to express my heartfelt appreciation for the push that he gave me, even when I didn’t want to be pushed, to complete my studies. He is a patient soul with a kind spirit. Finally, to my parents and my beloved family, thank you for your love, your prayers, and for your pride in me. I’ve always wanted to make you proud. I love you. v VITA July 15, 1949 Born – Troy, Alabama 1971 B.S., Sociology, Tuskegee University 1974 M.S.W., Social Work, University of Michigan 1974-1975 Child Welfare Caseworker Franklin County Children Services Columbus, Ohio 1975-1976 Child Welfare Casework Supervisor Franklin County Children Services Columbus, Ohio 1976-1978 Social Worker Veterans Affairs Medical Center Chillicothe, Ohio 1978-1980 Housing Management Officer U. S. Department of Housing and Urban Development Columbus, Ohio 1980-Present Social Worker Department of Veterans Affairs Outpatient Clinic Columbus, Ohio FIELDS OF STUDY Major Field of Study: Social Work Advisor: Dr. Virginia Richardson vi TABLE OF CONTENTS Abstract.......................................................................................................................... ii Dedication..................................................................................................................... iii Acknowledgments..........................................................................................................iv Vita.................................................................................................................................vi List of Figures.................................................................................................................x CHAPTER 1 Introduction.....................................................................................................................1 Statement of the Problem............................................................................................3 Significance of the Problem to Social Work...............................................................4 Purpose........................................................................................................................5 Research Question ......................................................................................................7 Personal Rationale ......................................................................................................7 Key Terms...................................................................................................................8 CHAPTER 2 REVIEW OF THE LITERATURE Introduction...................................................................................................................11 Advance Directives Completion Rates ......................................................................11 Obstacles to Effectiveness .........................................................................................13 History and Heritage...............................................................................................15 Religion and Spirituality.........................................................................................17 Bioethical Issues .....................................................................................................20 Social Issues............................................................................................................25 Education and Access .............................................................................................27 Research Limitations for Literature Reviewed.............................................................27 Theory...........................................................................................................................29 Bioecological Model from a Life Course Perspective............................................29 Life Course Perspective ..........................................................................................31 Historical Time and Place.......................................................................................33 Timing in Lives.......................................................................................................34