Cultural Issues in End-of-Life Decision Making

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Edited by: Kathryn L. Braun, James H. Pietsch & Patricia L. Blanchette

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  • Chapters
  • Front Matter
  • Back Matter
  • Subject Index
  • Part 1: The Medical, Legal, and Ethical Context of Death and Dying

    Part 2: Ethnic Perspectives on End-of-Life Decision Making

    Part 3: Religious Perspectives on End-of-Life Decision Making

    Part 4: End-of-Life Issues in Institutional Cultures and for Special Populations

  • Copyright

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    Preface

    JoanneLynn

    Dying in America has changed. During the early 1900s, most people died rather quickly and unexpectedly—at an average age of 47 years. Now, Americans average over 77 years of age at the time of death, and our deaths are preceded by years of gradually worsening disease and disability. It has taken some time for us to start making changes in society so that services are available to match the changes in dying. We also have started a process of encouraging people to take charge and make decisions. We even have defended the authority of the very sick to have their preferences implemented. Recently, we have begun to learn how to talk of slow courses to death, to deal with uncertainty, and to rearrange finances to match people's needs. Yet, much more needs to be done.

    Some of what is needed involves straightforward improvement in medical care. For example, some people still suffer without adequate pain relief, whereas others travel in and out of hospitals with no recognition of delirium. Our laws and regulations are much more likely to censure a physician for overprescribing narcotic drugs than for ignoring pain. Many practitioners do not know how to stop a ventilator or how to set up a patient-controlled analgesia pump. Education of doctors and nurses gives little attention to dying. Sadly, except for cancer pain, research on the care of the dying has been almost nonexistent.

    Yet, the dying process itself has become the province of medical care. Most Americans die in hospitals, and another large group die in nursing homes. Regulators of the rhythm of life are medical and nursing staff, and unfortunately, opportunities for family togetherness and spiritual peace are routinely overlooked. Poetry, metaphors, and stories exist to make sense of human experience when it overwhelms us, but these have little natural place in modern health care settings.

    Present shortcomings can be improved and, indeed, many in health care now aim to find out how. A key opportunity for improvement occurs when dying people have the time to make plans and control a good deal of what happens at the end of life. Because illnesses that now dominate the causes of death—cancer, heart disease, stroke, and dementia—are relatively slow and predictable, patients and families who are affected can plan ahead and shape the course of living near death. We are just learning how to proceed with planning care in advance and how to improve on standard “living will” forms.

    However, a manifestation of our society's unfamiliarity with these issues is that we have very little sensitivity to the different ways in which people perceive dying and planning for death. Of course, there are substantial variations simply on the basis of individual preferences and patterns. But there also are relatively predictable variations based on culture and history. Those variations are important in themselves because they allow people within those cultures to make coherent sense of their mortality and suffering. Variation also serves to illuminate what is essential and what is changeable in the human understanding of our finitude. Persons from one culture often learn a great deal when considering how others have made sense of relationships, illness, disability, and death.

    This book aims to help us begin to make sense of the differences that arise among groups of people bound together with a common history. Chapters in this volume form a primer on the rituals and history of a range of important groups comprising parts of the American citizenry. Practitioners will find these explanations helpful in understanding patients and families, whereas administrators will find useful guidance in adapting facilities and practices. Also, policymakers often consider laws and regulations only from the perspective of the dominant American culture. Consideration of the types of insights given here would help to ensure appropriate flexibility so that policies may serve those people from nondominant cultural backgrounds as well.

    Also provided are short overviews of the ethics, law, communication strategies, and clinical practices that shape the dominant culture. Explanations elsewhere of how “one is supposed to think” about advance directives seem oddly rational and devoid of passion in that we seemingly speak of medicine and law without dealing much with the emotional and spiritual aspects of human suffering and dying. However, the wonderfully metaphorical and historically rooted perspectives provided here from lesser known cultures are powerful and welcome antidotes.

    Admittedly, writers warn us many times not to assume much about a specific person on the basis of identification as part of a certain cultural group, and this admonition is well taken to heart. Variation within groups often is as extreme as variation among groups. Nevertheless, by understanding even a fraction of the histories, cultural assumptions, and languages of various cultural groups, practitioners can better serve the increasing diversity of America's populations.

    There is a serious need for more research on which to base cross-cultural comparisons. It is a difficult task, requiring more than the usual interview or chart review for reasonable completeness and insight, and in this light, very little research has been done on end-of-life understandings, rituals, and conceptualizations across cultural groups. However, this book brings together the results of that work with a good deal of insight from the experienced authors of each chapter

    This book has long been needed. It helps to start a continuous process of coming to terms with our diversity, even while our society also is trying to come to better terms with our mortality.

    Acknowledgments

    As with any book, the compilation of this volume took the efforts of many individuals. Many thanks, first, go to the professionals from across North America who agreed to contribute chapters. Their willingness to participate in this project and their patience with its pace of completion are greatly appreciated. At the University of Hawaii, we are indebted to Carol Matsumiya and Kim Sugawa-Fujinaga, of the Center on Aging at the School of Public Health, who coordinated mailings, proofed and edited documents, identified missing references, and otherwise provided moral support to the editors. Thanks also go to Virginia M. Tanji, School of Public Health librarian, for assistance with searches and references. Third, we thank Sage Publications for its support of this effort. Our primary contacts, Daniel Ruth and Jim Brace-Thompson, were especially helpful in guiding us through the process. Finally, we thank our families and friends for their support of this project.

  • Author Index

    About the Contributors

    Marc R. Alexander, S.T.D., is Theologian for the Diocese of Honolulu and founding Executive Director of the Hawaii Catholic Conference, the public policy arm for the Roman Catholic Church in the state of Hawaii. He holds degrees in philosophy and theology, including an M.A. and a licentiate in sacred theology (summa cum laude) from the Catholic University of Louvain as well as a doctorate in sacred theology from the Gregorian University in Rome. He has published in both the United States and Europe. He is a fellow of the St. Francis International Center for Healthcare Ethics and serves as a governor's appointee to state-sponsored committees on decision making in Hawaii.

    Patricia L. Blanchette, M.D., M.P.H., is Professor of Medicine and Public Health at the John A. Burns School of Medicine and School of Public Health at the University of Hawaii at Manoa. She is director of the medical school's cross-departmental Geriatric Medicine Program and Geriatric Medicine Fellowship Program, the Pacific Islands Geriatric Education Center, and the John A. Hartford Foundation-Kuakini Medical Center's Center of Excellence in Geriatric Medicine. After graduating with concurrent M.D. and M.P.H. degrees from the University of Hawaii at Manoa, she completed an internal medicine internship and residency at the Dartmouth-Hitchcock Medical Center and a fellowship in geriatric medicine at Harvard Medical School. She is board certified in internal medicine and geriatric medicine. She has won numerous awards and honors, including an Excellence in Teaching Award, Distinguished Alumni, Best Doctors in America, and the Soroptimist's Women of Distinction Award.

    Kathryn L. Braun, Dr. P. H., is Director of the University of Hawaii Center on Aging and Associate Professor at the University of Hawaii School of Public Health. Her research focuses on Asian and Pacific Islander aging, with publications exploring ethnic differences in life expectancy and mortality as well as cultural variations in disease perceptions and health practices. She is author of the study and faculty guides associated with the telecourse, “Growing Old in a New Age.” She is a fellow in the Gerontological Society of America and the Association for Gerontology in Higher Education. She received a Board of Regent's Medal for Excellence in Teaching from the University of Hawaii in 1998.

    Julie A. Patterson Fago, M.D., is Assistant Professor of Medicine and Director of Clinical Geriatric Programs at the Center for the Aging at Dartmouth Medical School. She also is the geriatric consultant to Dartmouth Hitchcock Medical Center's End-of-Life Project.

    Celina Gomez, M.D., is a family physician and a faculty member with the Department of Family Medicine at the Universidad Autonoma de Nuevo Leon, Monterrey, Mexico. She completed a fellowship in bioethics at the University of Texas Health Science Center in San Antonio in 1997. While in San Antonio, she worked with Melissa Talamantes on a study of advance health planning among Mexican Americans. They are replicating their San Antonio study in Monterrey and are particularly interested in issues of acculturation.

    Hamid Abdul Hai, M.D., is a cardiologist who trained at the Peter Bent Brigham Hospital, the Harvard Medical School, and the Harvard School of Public Health. He is Associate Professor of Cardiology at Northwestern University and practices cardiology in Chicago. He also is an Islamic scholar, popular speaker, writer, and Khateeb (sermon giver). He is a vice-chairman of the Council of the Parliament of the World's Religions and is chairman of the Islamic group of that organization. He serves on the board of directors of the American Islamic College and is a fellow of the American College of Cardiology.

    Nancy Hikoyeda, M.P.H., teaches in the gerontology program at San Jose State University and is an associate faculty member at the Stanford Geriatric Education Center. She received a B.A. in education from the University of Utah and her M.P.H. and certificate in applied social gerontology from San Jose State. Her research and publications are in the areas of health, aging, and ethnicity, particularly long-term care utilization and policy. She also is a doctoral candidate at the University of California at Los Angeles School of Public Health and is a recipient of a predoctoral fellowship from the UCLA/ VA/RAND Medtep Research Center for Asian/Pacific Islanders to study the role of ethnicity in the quality of life of institutionalized Japanese American women.

    Asad Husain, Ph.D., is Professor of Political Science and Director of the Summer Institute of Islamic Studies at Northeastern Illinois University. He also is president of the American Islamic College in Chicago. He received his M.A. degree in journalism and international relations, and later his Ph.D., from the University of Minnesota. He is the author of several books and many articles. He established the Institute of Muslim Minority Affairs at King Abdul Aziz University at Jeddah, Saudi Arabia, in 1975. For his work on Muslim minorities, he received a Professional Advancement and Merit award in 1995. He is one of the founders of the Muslim Community Center of Chicago and is affiliated with many other Islamic organizations, including the International Strategy and Policy Institute. In 1996, the Vatican presented him with the Order of Merit of the Knights and Ladies of the Equestrian Order of the Holy Sepulcher of Jerusalem.

    Marshall B. Kapp, J.D., M.P.H., received his B.A. from Johns Hopkins University, after which he completed a J.D. with honors from George Washington University and an M.P.H. from the Harvard University School of Public Health. He serves as Director of Geriatric Medicine at Wright State University and holds an adjunct faculty appointment at the University of Dayton School of Law, teaching courses on legal and ethical aspects of health care. As founding editor of the Journal of Ethics, Law, and Aging, he also has served as consultant to a wide range of government and private agencies. He also is the recipient of numerous awards, including the Journal of Healthcare Risk Management Award for Writing Excellence as Author of the Year from the American Society for Healthcare Risk Management.

    William Kavesh, M.D., M.P.H., is Medical Director of Primary Care Geriatrics at the Philadelphia Veterans Administration Medical Center. He also is a clinical assistant professor of medicine and fellow of the Institute on Aging at the University of Pennsylvania Health System as well as an adjunct assistant professor of public health at the Boston University School of Public Health. Educated at the Massachusetts Institute of Technology, Albert Einstein College of Medicine, and Harvard School of Public Health, he also is a member of the American Geriatrics Society and the Gerontological Society of America. He has been writing about Jewish medical ethics and related issues for more than 20 years and is a member of the editorial board of the Journal of Ethics, Law, and Aging.

    Tom Koch, M.S., is a writer/researcher specializing in issues surrounding the care of the fragile. The author of eight books, including The Limits of Principle: Who Lives and What Dies, he also is a research associate in bioethics at the Hospital for Sick Children in Toronto and a forum associate for the David Lam Center at Simon Fraser University. He is the director of Information Outreach, a Toronto-based research organization.

    Shari L. Kogan, M.D., is Director of Geriatric Services for the Queen's Medical Center in Honolulu, Hawaii. She studied medicine at the Mount Sinai School of Medicine and then taught geriatrics and ethics while on active duty in the U.S. Air Force. Following this, she was an assistant professor of geriatric medicine at the John A. Burns School of Medicine in Honolulu, teaching in both the medical school and the geriatric medicine fellowship programs.

    Joanne Lynn, M.D., M.A., M.S., is Professor of Health Care Sciences and Medicine and Director of the Center to Improve Care of the Dying at the George Washington University Medical Center. As a geriatrician and former medical director of the Washington Home and Hospice of Washington, she was elected to the Institute of Medicine in 1996. She also has been on the board of directors of Concern for Dying, the American Bar Association's Commission on Legal Problems of the Elderly, and the Hastings Center Task Force that wrote the Guidelines for the Termination of Treatment and the Care of the Dying. She also served as project director of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and as co-director of SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments).

    Ronald A. Martino, M.D., graduated from Rutgers University in 1971. After receiving his M.D. from Tufts University School of Medicine in 1975, he completed residencies in both neurology and psychiatry at Mount Sinai Hospital in New York City in 1980. He is board certified in both specialties and has aprivate practice in Fairbanks, Alaska. He is a member of the Phi Beta Kappa and Alpha Omega Alpha honor societies, and he continues to serve in the army reserves as commander of the 1984th U.S. Army Hospital with the rank of colonel.

    Kamal Masaki, M.D., is aboard-certified internist and geriatrician as well as Associate Professor in the Geriatric Medicine Program and Associate Program Director of the Geriatric Medicine Fellowship Program in the John A. Burns School of Medicine at the University of Hawaii. She is involved in several research programs and is the clinical director for the Honolulu Heart Program, the Honolulu-Asia Aging Study, and the Hawaii Center for the Women's Health Initiative, among others. She has an interest in ethical issues and has been a member of the ethics committee at the Kuakini Medical Center since 1990.

    Charles P. Mouton, M.D., M.S., is Assistant Professor in the Division of Community Geriatrics, Department of Family Practice, at the University of Texas Health Science Center at San Antonio as well as Assistant Clinical Professor at the University of Medicine and Dentistry of New Jersey. He received his M.D. from Howard University and his M.S. in clinical epidemiology from the Harvard University School of Public Health. After completing his residency in family practice at Prince George's Hospital Center in Cheverly, Maryland, he received his geriatrics fellowship at the George Washington University Medical Center. He is a member of the Gerontological Society of America, the American Geriatrics Society, the Society of Teachers of Family Medicine, and the National Medical Association.

    Ronald Y. Nakasone, Ph.D., teaches Buddhist thought, ethics, and aesthetics at the Graduate Theological Union at Berkeley, California. An ordained Buddhist priest, he studied Buddhism at the University of Hawaii at Manoa, Ryukoku University in Kyoto, Japan, and Harvard University. He received his doctorate in Buddhist studies from the University of Wisconsin-Madison. He is an affiliate faculty member of the Stanford Geriatric Education Center at Stanford University and a founding member of the Elder Ministry (formerly the Institute of Spirituality and Aging), a grassroots organization dedicated to educating and serving the spiritual needs of elders and their caregivers. He is the author of Ethics of Enlightenment, Sermons and Essays in Search of a Buddhist Ethic, and numerous articles that give a Buddhist perspective on bioethics.

    Ross E. Newmann, M.S., R.N., F.N.P.-C., A.C.R.N., is based at the Community Medicine Clinic and HIV Clinic at the Tripler Army Medical Center of Hawaii. He also serves as Clinical Assistant Professor of Nursing at the University of Hawaii at Manoa, Instructor of Nursing at Hawaii Pacific University, and Family Nurse/HIV Practitioner at Tripler Army Medical Center. He received his M.S. from the University of Hawaii at Manoa in 1995 and is a member of the American Academy of Nurse Practitioners, Association of Nurses in AIDS Care, and Sigma Theta Tau International Honor Society of Nursing.

    Patricia W. Nishimoto, B.S.N., M.P.H., D.N.S., is lieutenant colonel in the U.S. Army Reserves, Nursing Corps. After receiving a scholarship during the Vietnam War to attend the Walter Reed Army Institute of Nursing, she served 10 years of active duty followed by 18 years of reserve experience. Dividing her time between serving as an associate professor at the University of Hawaii at Manoa, chief nurse at the 1984th General Hospital, and oncological clinical nurse specialist at Tripler Army Medical Center, she also is a member of various military and civilian organizations. These include the Association of Military Surgeons of the United States, Reserve Officer Association, Order of Military Medical Merit, Association of Nurses in AIDS Care, Oncology Nursing Society, Sigma Theta Tau Honor Society of Nursing, and Association of Death Educators and Counselors.

    Russel Ogden, B.G.S., B.S.W. (R.S.W.), M.A., received his M.A. in criminology at Simon Fraser University in 1994. He was awarded the university's Sterling Prize in Support of Controversy for his research and his principled protection of the confidentiality of research participants. He took up Ph.D. studies at the University of Exeter in England, where his cross-national research into the underground phenomenon of assisted death again has become the subject of controversy and is the topic of a senate academic inquiry. He recently returned to Canada, where he is an independent researcher working on end-of-life and academic freedom topics. He is a member of the British Columbia Association of Social Workers and the British Columbia Civil Liberties Association. He also has published survey research on assisted death issues regarding social workers and nurses.

    Charon A. Pierson, R.N., M.S., G.N.P., Ph.D., is Associate Professor of Nursing at the University of Hawaii at Manoa. She has been in clinical practice as a gerontological nurse practitioner for 16 years and has taught nurse practitioners since 1986. As a part of her doctoral work in medical sociology, she researched and published on issues related to end-of-life decision making. Her other academic interests include ethnomethodology and conversation analysis within the context of multidisciplinary collaborative hospital rounds. She is active in many professional nursing organizations and is president of the Hawaii chapter of Sigma Theta Tau, the National Nursing Honor Society.

    James H. Pietsch, J.D., is Director of the University of Hawaii Elder Law Program, Associate Professor at the William S. Richardson School of Law, and Clinical Adjunct Professor at the John A. Burns School of Medicine. He received his B.A. from Georgetown University and his J.D. from the Catholic University of America. He is a member of numerous bar associations, including the Hawaii State Bar Association, National Academy of Elder Law Attorneys, and Bar of the Supreme Court of the United States. Within the community, he serves on various committees focusing on ethics and health care, including the Governor's Blue Ribbon Committee on Living and Dying With Dignity and the Queen's Medical Center Ethics Committee. In 1990, he was the recipient of the fifth annual Paul Lichterman Memorial Award for contributions to the advancement of law and aging.

    Mary Rowell, R.N., M.A., is Bioethicist at the Hospital for Sick Children and the University of Toronto Joint Centre for Bioethics. She is a registered nurse in the United Kingdom and Canada, and she has worked extensively in health care education in the field of ophthalmology and blindness prevention in Southeast Asia, China, the Indian subcontinent, and Eastern Europe. She is a graduate of the University of London in philosophy, medical ethics, and medical law. She is undertaking further graduate studies in theology at the University of Toronto.

    Melissa A. Talamantes, M.S.G., is Assistant Professor at the University of Texas, teaching in the areas of gerontology and community medicine. Before joining the faculty at the University of Texas Health Science Center, she worked several years as a case manager and counselor for older adults and family caregivers in community-based programs in California, New Mexico, and Texas. She also has served as a hospice volunteer. She is a board member for the American Society on Aging as well as an officer for the Association for Anthropology and Gerontology. She is a board member for community-based organizations, including the South Central Chapter of the Alzheimer's Association, Sister's Care of San Antonio, and Benetia Family Center.

    Nancy Westlake Van Winkle, Ph.D., is Associate Professor of Behavioral Sciences in the College of Osteopathic Medicine at Oklahoma State University. After receiving a double B.A. in sociology and anthropology from Pennsylvania State University, she received her M.A. in sociology from the University of New Mexico and her Ph.D. in sociology from the University of Kentucky. She also is a member of the gerontology faculty and an adjunct associate professor in the Department of Sociology at Oklahoma State. She serves as a member of various professional associations, including the American Sociological Association, Gerontological Society of America, and Association of Gerontology in Higher Education.

    Gwen Yeo, Ph.D., is an educational gerontologist who has been active in the field for 25 years. With experience as a social worker and teacher of sociology at colleges in Texas and California, she completed her doctoral program in education with a research emphasis in gerontology at Stanford University. Since 1975, she has taught and developed gerontology and geriatric curriculum at Chabot College and Stanford University. She is the founding director of the Stanford Geriatric Education Center, which has helped to develop the field of ethnogeriatrics (health care for elders from diverse ethnic backgrounds). Her research interests include ethnicity and long-term care. In addition to numerous other local and national board appointments, she serves on the editorial board of the Journal of Gerontology: Psychological Sciences and on the ethnogeriatrics advisory committee of the American Geriatrics Society.


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