Symbolic Immortality - The Life Tapes Project
Abstract F-22 for the American Society of Breast Disease 31st Annual Symposium Society of Clinical Oncology, April 12-14, 2007, San Francisco, CA
Ernest H. Rosenbaum, MD, Alexandra Andrews, Robert Garlan, PhD, Alison Siegal, MA, Naama Hirschberger, MA, Lisa D. Butler, PhD, and David Spiegel, MD
Cancer Supportive Care, Stanford Hospitals and Clinics, Palo Alto, CA, United States, 94304
Introduction-Background-Objective A diagnosis of cancer poses a powerful threat to the emotional equilibrium of both patients and families. It poses an existential threat, coupled with the fear of arduous treatments and possible painful decline, which haunts both patients and families despite the current improved effectiveness of treatments and the prospects of improved survival. With the possible prospect of dying, isolation becomes especially distressing (Yalom, 1980). A key role of both family and medical team is to provide a supportive environment for the patient to live and confront the potential reality of death.
Life Tapes Project (LTP) is an intervention - involving a two-hour video-taped genealogy and life story in the presence of family - with the goals of providing a safe, nurturing environment to open communication between family members touched by a diagnosis of cancer and to decrease feelings of isolation in the patient. One important element of the LTP is the cultivation of symbolic immortality - that some important part of the person continues to exist symbolically, even after death - helping patients identify with things greater and more enduring than themselves and providing a sense of what will remain with the family after they are gone.
Methods Clinical observation and a pilot study suggested that many patients received important benefits from participation. An ongoing study has been initiated to systematically document benefits, identify possible unwanted effects. CancerSupportiveCare.com web pages were established to bring this tool to a world wide population, Local participants (cancer patients with any diagnosis) complete baseline questionnaires before the LT interview and follow-up packets two and ten weeks after. Measures include, among others, the FACT-G for Quality of Life (QOL), a Perceived Benefits Questionnaire (Stanford) covering eight themes suggested by pilot research, and a semi-structured exit interview exploring possible unwanted effects.
Results FACT-G Functional and QOL (Total) scales increased and substantial benefits were reported by a majority of participants (N = 23 as of 1/8/06) at first follow-up, with themes of Imparting Personal Philosophy, Reducing Existential Dread, Gaining Perspective and Meaning, and Improved Communication most commonly endorsed. Exit interviews to date revealed no serious unwanted side effects.
Conclusion The act of reflection helps to bring a sense of meaning and closure for patients. Thus, it affords an opportunity to identify, strengthen or reaffirm a connection with the value of life and lessens the anxiety and alienation that so often accompanies an awareness of mortality. Preparation of such a legacy involves both a confrontation with death and an enhancement of life. Internet cancer supportivecare quality of life educational strategies enhance coping with the myriad of challenges that accompany the diagnosis and treatment of cancer.
Prior publication or presentation Ongoing publication using the website CancerSupportiveCare.com
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