THE SOUL OF BIOETHICS (Dec. 15, 2002) Edited by Harry R. Moody ===================================================== - From the Editor - Ethical Wills - Communicative Ethics - Case Study: Truth-telling & Alzheimer's - Web Resources on Truth-telling - Care in Dying Report - Ethics Committees in Japan - Palliative Care - Ethics in an Aging Society ====================================================== FROM THE EDITOR Harry (Rick) Moody Welcome to the first issue of "The Soul of Bioethics," a monthly e-newsletter for those concerned with ethical dilemmas in geriatric care. A companion newsletter, "Human Values in Aging UPDATE," is published by the International Longevity Center-USA and now has 2,300 subscribers worldwide. The Summer, 2002 edition of the BIOETHICS EXAMINER, published by University of Minnesota Bioethics Center, contains a lead article titled "Does American Bioethics Have a Soul?" by Steven Miles, M.D. The full text is available at: http://www.bioethics.umn.edu/publications/BEsummer2002.pdf This new publication is an answer to the question posed by Dr. Miles. This newsletter is aimed at those who work in clinical settings where it's important to develop a more holistic perspective on ethics and aging. Each month I will be publishing a mini Case Study that features dilemmas faced in health or human service settings, including those drawn from my own teaching and consulting work. I encourage readers to share dilemmas they face in practice, as well as information about resources that can help deepen our approach to these issues. For more on my own work on "The Soul of Bioethics," you can find details about a new workshop offered under this title, now available at: http://www.hrmoody.com ====================================================== ETHICAL WILLS Legal wills aim to bequeath our material possessions, but "Ethical Wills" aim to convey our deepest values. An Ethical Will is a document, written before death or during any time of life, in which we put down on paper what we stand for, what we want to leave behind as our legacy. The practice of creating an Ethical Will dates back thousands of years, but the tradition is a lost art which now being rediscovered in the 21st century. Barry Baines, a physician and educator in the hospice field, has recently published a useful guidebook, ETHICAL WILLS: Putting Your Values on Paper, available from Perseus Books ($13.00). Contact Dr. Baines at: thelegacycenter@yahoo.com For more on ethical wills, visit: http://www.ethicalwill.com ----------------------<<< >>>------------------------ COMMUNICATIVE ETHICS Critics have often called into question the one-sided emphasis on autonomy in American bioethics. Now comes an important study on end-of-life care concluding that "Effective communication includes sharing the burden of decision making with family members." See "Withdrawal of Life Support: Intensive Caring at the End of Life" in the Dec. 2, 2002 issue of the Journal of the American Medical Association, available at: http://jama.ama-assn.org/issues/v288n21/abs/jel20003.html Also don't miss the outstanding article by Theresa Drought and Barbara Koenig: " 'Choice' in End-of-Life Decision Making: Researching Fact or Fiction?" in the special issue devoted to End-of-Life Research: Focus on Older Populations, published by THE GERONTOLOGIST. Many fine articles here report on results of national studies that point the way to better palliative care in the future. To separate fact from fiction, we need both more research and better communication. ----------------------<<< >>>------------------------ CASE STUDY Who is Sylvia? Mrs. Senex has been living with her daughter, Sylvia, for the past six years. During this period Mrs. Senex's Alzheimer's has gotten progressively worse. The mother was given extensive tests six years ago but never told the results. Sylvia has informed her mother that she has "a medical problem," and that her memory would never get better. But Sylvia has refused to use the word "Alzheimer's" or anything similar. Mrs. Senex has recently started receiving home care services, but the home care agency is disturbed by the fact that has been kept in the dark about her diagnosis. Case Commentary (HRM) This is an actual case from a participant in a workshop I did earlier this year in Oregon. We were discussing the ethics of truth-telling when one woman in the back of the room ("Sylvia") raised her hand and told the story of her caregiving experiences which seemed to contradict the broad consensus in favor of "Tell the truth" heard that day in the workshop. This case reminds us that there is a difference between what we might call the "ethics of intimacy" and the "ethics of strangers." How Sylvia talks to her mother in the privacy of their home may not be anyone's business. But once the home care agency is involved, strangers have entered the scene and things are different. The agency feel disturbed, and rightly so, by the fact that Sylvia has kept her mother in the dark about the diagnosis. Or has she? Is Sylvia required to use the "A" word (Alzheimer's) or could she fulfill the requirements of truth-telling by informing her mother that she has a "progressive neurological disease with memory impairment that will get worse?" Perhaps Sylvia has conveyed what's essential. But she hasn't used words like "Alzheimer's" or "dementia" and maybe she has her reasons. Now there is a strong burden of proof on Sylvia to defend her reasons because she has involved the home care agency in her conspiracy. At what point does withholding the (complete) truth become actual lying? Is there a way to begin to tell Mrs. Senex the truth about her situation? Should an ethic of "rules and principles" give way to an ethics of relationship and care, which might be a way in which Sylvia could justify her behavior? In Sylvia's case what has worked over the past six years may not be a guide to the future. One could argue that ethical imperatives in dementia ought to be "stage specific" and tailored to what patients can hear and understand at different stages of the disease. Does Sylvia's action constitute a kind of "validation therapy" or is it simply part of a pattern of (non) communication that could be a lifelong habit between mother and daughter? We don't know the answers to these questions. But the presence of outsiders in the home will bring such questions to the surface. The ethical dilemmas become unavoidable. ----------------------<<< >>>------------------------ WEB RESOURCES ON TRUTH-TELLING ATTITUDES TOWARD TRUTH-TELLING. A study in 1996 published by the American Geriatric Society looked at a group of healthy residents in a retirement community and compared their attitude about being told diagnosis of Alzheimer's with being told the diagnosis of terminal cancer. Percentages were significantly higher for wanting to know cancer diagnosis compared to Alzheimer's. Even fewer married subjects wanted their spouse to know either illness (35%). This raises significant ethical issues for physician and health providers. Reasons individuals wanted to know Alzheimer's diagnosis included: "To understand what is happening to me"; "To be prepared spiritually"; "To find out all about Alzheimer's"; "Not knowing would be more frightening than to know". For those not wanting to know: "No cure anyway"; "Destroys hope, and would not help me to know". For details visit: http://neuro- oas.mgh.harvard.edu/alzheimers/patient_resources/social_workers.html#Di agnosis%20and%20Grief%20Process For the position of the Alzheimer's Association, "Telling the Truth in Diagnosis," see: http://www.alz.org/ResourceCenter/FactSheets/FSTruthDiagnosis.pdf ----------------------<<< >>>------------------------ CARE IN DYING REPORT A national study released last month concluded that The United States is a cold and uncaring place to die, offering little relief from pain or even sympathy to people in their last weeks and months. The Last Acts coalition, supported by the Robert Wood Johnson Foundation, issued the report. For an overview, visit: http://www.reutershealth.com/archive/2002/11/19/eline/links/20021119eli n025.html To read the full report "Means to a Better End," visit: http://ww2.rwjf.org/news/special/means.jhtml The Nov-Dec, 2002 issue of the on-line journal, Innovations in End-of-Life Care, is devoted to "Enhancing Meaning, Hope, and Dignity Near the End of Life." This issue of Innovations is available at: http://www2.edc.org/lastacts ----------------------<<< >>>------------------------ ETHICS COMMITTEES IN JAPAN The Japanese have decided that Ethics Committees need a makeover. A council within the Ministry of Education, Culture, Sports, Science, and Technology is currently reviewing the role of ethics committees operating in hospitals, medical schools, and other institutions conducting biological research. For details, see: http://mdn.mainichi.co.jp/news/archive/200211/25/20021125p2a00m0oa02700 0c.html Ethics Committees were invented by Western ethicists. But does our approach to ethics reflect an outlook, perhaps a bias, that diverges from the Japanese perspective? For a bibliography on bioethics from a Buddhist point of view, see: http://jbe.la.psu.edu/2/dkhabs.html Buddhism and Medical Ethics: A Bibliographic Introduction by James J. Hughes (MacLean Center for Clinical Medical Ethics) and Damien Keown Goldsmiths (University of London) http://www.changesurfer.com/Bud/BudBioEth.html ----------------------<<< >>>------------------------ PALLIATIVE CARE PALLIATIVE CARE EDUCATION. Harvard Medical School's Center for Palliative Care is offering a "Program in Palliative Care Education and Practice" on April 29-May 6 and again November 11-18, 2003. Physicians and nurse-educators will receive training to teach others about end-of-life care issues through educational and clinical innovations. Deadline for applications is Jan. 27, 2003. For more information, contact: pallcare@partners.org For more on the Palliative Care Program visit: http://www.hms.harvard.edu/cdi/pallcare ----------------------<<< >>>------------------------ ETHICS IN AN AGING SOCIETY (Johns Hopkins Univ. Press, 1992, paperback, 1995). The first single author monograph on bioethics and aging, including coverage of issues of rational suicide, Alzheimer's Disease, autonomy in long term care and justice between generations. Application of the Critical Theory of Jurgen Habermas to applied ethics. For details on the book, visit: http://www.press.jhu.edu/press/books/titles/s96/s96moet.htm xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx This electronic newsletter, edited by Harry (Rick) Moody, is published by the Institute for Human Values in Aging with the support from the Robert Wood Johnson Foundation. To submit items of interest, request subscription changes, or unsubscribe contact: hrmoody@yahoo.com For additional information, visit http://www.hrmoody.com (c) Copyright 2002; all rights reserved.