Project Summary
End of Life Care after a Decade of Reform: What Has Been Accomplished? Where Should We Go from Here?
Selected Bibliography on End of Life Care Decision-making
Albrecht, G.L., and P.J. Devlieger, “The Disability Paradox: High Quality of Life against All Odds,” Social Science and Medicine 48 (1999): 977-88.
Alemayehu, B., and K.E. Warner, “The Lifetime Distribution of Health Care Costs,” Health Services Research 39 (2004): 627-42.
American Health Decisions, The Quest to Die with Dignity (Appleton: American Health Decisions, 1997).
Asch, A., “Disability, Bioethics and Human Rights,” in Handbook of Disability Studies, eds. G. Albrecht, K. Seelman, and M. Bury (Thousand Oaks, Calif.: Sage Publications, 2001).
Aulino, F., and K. Foley, “Professional Education in End-of-Life Care. A US Perspective,” Journal the Royal Society of Medicine 94 (2001): 472-76.
Brennan, F., “‘Pain Relief is a Basic Human Right’: The Legal Foundations of Pain Relief,” Journal of Palliative Care 20 (2004): 236.
Burt, R.A., Death Is That Man Taking Names: Intersections of American Medicine, Law, and Culture (Berkeley, Calif.: University of California Press, 2002).
Cahill, L.S., “Catholicism, Death and Modern Medicine,” America 192 (2005): 14-17.
Callahan, D., The Troubled Dream of Life: In Search of a Peaceful Death, second edition (Washington, D.C.: Georgetown University Press, 2000).
Capello, C.F., D.E. Meier, and C.K. Cassel, “Payment Code for Hospital-Based Palliative Care: Help or Hindrance?” Journal of Palliative Medicine 1 (1998): 155-63.
Carter, B.S., and M. Levetown, eds., When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, a report from the Institute of Medicine (Washington, D.C.: National Academies Press, 2003).
Cassel, C., and K. Foley, Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine (New York: Milbank Memorial Fund, 1999).
Clark, D., and H.T. Les Have, Facing Death: The Ethics of Palliative Care. European Perspectives (Philadelphia: Open University Press, 2002).
Davies, E., and I.J. Higginson, eds., Palliative Care: The Solid Facts (Geneva, Switzerland: World Health Organization Collaboration Project, 2004).
Dresser, R., and J.A. Robertson, “Quality of Life and Non-Treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach,” Law, Medicine & Health Care 17 (1989): 234-44.
Dresser, R., “What Bioethics Can Learn from the Women’s Health Movement,” in Feminism and Bioethics: Beyond Reproduction, ed. S. Wolf (New York: Oxford University Press, 1996).
Dresser, R., “Death with Dignity: Contested Boundaries,” Journal of Palliative Care 20 (2004): 134-42.
Education Development Center, Meeting the Challenge: Twelve Recommendations for Improving End-of-Life Care in Managed Care (Newton, Mass.: EDC, 1999).
Edwards, M.J., and S.W. Tolle, “Disconnecting a Ventilator at the Request of a Patient Who Knows He Will Then Die: The Doctor’s Anguish,” Annals of Internal Medicine 117 (1992): 254-56.
Emanuel, E.J., et al., “Talking with Terminally Ill Patients and their Caregivers about Death, Dying, and Bereavement: Is it Stressful? Is it Helpful?” Archives of Internal Medicine 164 (2004): 1999-2004.
Fagerlin, A., and C. Schneider, “Enough: The Failure of the Living Will,” Hastings Center Report 34 (2004): 30-42.
Field, M.J., and C.K. Cassel, eds., Approaching Death: Improving Care at the End of Life (Washington, D.C.: National Academy Press, 1997).
Foley, K.M., and H. Gelband, eds., Improving Palliative Care, a report from the Institute of Medicine (Washington, D.C.: National Academies Press, 2001).
Freeborne, N., J. Lynn, and N.A. Desbiens, “Insights about Dying from the SUPPORT Project,” Journal of the American Geriatric Society 48 (2000): S199-S205.
Fried, T.R., et al., “Understanding the Treatment Preferences of Seriously Ill Patients,” New England Journal of Medicine 346 (2002): 1061-66.
Finucane, T.E., C. Christmas, and K. Travis, “Tube Feeding in Patients with Advanced Dementia: A Review of the Evidence,” Journal of the American Medical Association 282 (1999): 1365-70.
Gill, C., “Health Professionals, Disability, and Assisted Suicide: An Examination of Relevant Empirical Evidence and Reply to Batavia,” Psychology, Public Policy and Law 6 (2000): 526-46.
Hammes, B.J., and B.L. Rooney, “Death and End-of-Life Planning in One Midwestern Community,” Archives of Internal Medicine 158 (1998): 383-90.
Harmon, L., “Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment,” Yale Law Journal 100 (1990): 1-71.
Hawkins, N.A., et al., “Micromanaging Death: Process Preferences, Values, and Goals in End-of-Life Medical Decision Making,” The Gerontologist 45 (2005): 107-117.
Herr, S.S., B.A. Bostrom, and R.S. Barton, “No Place To Go: Refusal of Life-sustaining Treatment by Incompetent Persons with Physical Disabilities,” Issues in Law and Medicine 8 (1992): 3-36.
Hickman, S.E., S.W. Tolle, K. Brummel-Smith, and M.M. Carley, “Use of the Physician Orders for Life-Sustaining Treatment Program in Oregon Nursing Facilities: Beyond Resuscitation Status,” Journal of the American Geriatrics Society 52 (2004): 1424-29.
Jennings, B, et al., “Access to Hospice Care: Expanding Boundaries; Overcoming Barriers,” Hastings Center Report Special Supplement 33, no. 2 (2003).
Johnson, S.H., “The Fear of Liability and the Use of Restraints in Nursing Homes,” Journal of Law, Medicine and Health Care 18 (1990): 263-80.
Journal of the American Medical Association 284 (November 15, 2000) (entire issue devoted to end of life care).
Kapp, M.B., “Legal Anxieties and End-of-Life Care in Nursing Homes,” Issues in Law and Medicine 19 (2003): 1-23.
Kaufman, S.R., And a Time to Die: How American Hospitals Shape the End of Life (New York: Scribner, 2005).
Knaus, W.A., et al., “The SUPPORT Prognostic Model: Objective Estimates of Survival for Seriously Ill Hospitalized Adults,” Annals of Internal Medicine 122 (1995): 191203.
Lee, M.A., K. Brummel-Smith, J. Meyer, N. Drew, and M.R. London, “Physician Orders for Life-Sustaining Treatment (POLST): Outcomes in a PACE Program. Program of All-Inclusive Care for the Elderly,” Journal of the American Geriatrics Society 48 (2002): 1219-25.
Lunney, J.R., J. Lynn, and C. Hogan, “Profiles of Older Medicare Decedents,” Journal of the American Geriatrics Society 50 (2002): 1108-12.
Lunney, J., and J. Lynn, “Why We Know Painfully Little About Dying,” The Washington Post, March 27, 2005.
Lynn, J., et al., “Prognoses of Seriously Ill Hospitalized Patients on the Days Before Death: Implications for Patient Care and Public Policy,” New Horizons 5 (1997): 56-61.
Lynn , J., J.L. Schuster, and A. Kabcenell, Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians (New York: Oxford Press, 2000).
Lynn, J., et al., “Ineffectiveness of the SUPPORT Intervention: Review of Explanations,” Journal of the American Geriatric Society 48 (2000): S206-S213.
Lynn, J., et al., “Reforming Care for Persons Near the End of Life: The Promise of Quality Improvement,” Annals of Internal Medicine 137 (2002): 117-22.
Lynn, J., Sick to Death and Not Going to Take It Anymore (Berkeley, Calif.: University of California Press, 2004).
Meilaender, G., “Living Life’s End,” First Things 153 (2005): 17-21.
Meisel, A., and K. Cerminara, The Right to Die: The Law of End-of-Life Decisionmaking, third edition (New York: Aspen Law and Business, 2004).
Mezey, M.D., et al. Guidelines for End of Life Care in Nursing Facilities: Principles and Recommendations (New York: John A. Hartford Foundation Institute for Geriatric Nursing, 2001).
Mitchell, S.L., D.K. Kiely, and M.B. Hamel, “Dying with Advanced Dementia in the Nursing Home,” Archives of Internal Medicine 164(2004): 321-26.
Molloy, D.W., et al., “Systematic Implementation of an Advance Directive Program in Nursing Homes: A Randomized Controlled Trial,” Journal of the American Medical Association 283 (2000): 1437-44.
National Consensus Project, Clinical Practice Guidelines for Quality Palliative Care (Brooklyn, N.Y.: National Consensus Project, 2004).
National Hospice Organization, Nursing Home Task Force Report (Arlington, Va.: National Hospice Organization, 1998).
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (Washington, D.C.: Government Printing Office, 1983).
Robert Wood Johnson Foundation, Promoting Excellence in End-of-Life Care (Missoula, Mont.: Practical Ethics Center/University of Montana, nd.)
Sachs, G.A., J.W. Shega, and D. Cox-Hayley, “Barriers to Excellent End-of-Life Care for Patients with Dementia,” Journal of General Internal Medicine 19 (2004): 1057-63.
Schmidt, T.A., et al., “The Physician Orders for Life-Sustaining Treatment Program: Oregon Emergency Medical Technicians’ Practical Experiences and Attitudes,” Journal of the American Geriatrics Society 52 (2004): 1430-34.
Shugarman L., et al., “Differences in Medicare Expenditures During the Last 3 Years of Life,” Journal of General Internal Medicine 19 (2004): 127-35.
SUPPORT Principal Investigators, “A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments,” Journal of the American Medical Association 274 (1995): 1591-98.
Teno, J.M., and J. Lynn. “Putting Advance-Care Planning into Action,” Journal of Clinical Ethics 7 (1996): 205-13.
Teno, J.M., et al., “Family Perspectives on End-of-Life Care at the Last Place of Care,” Journal of the American Medical Association 291 (2004): 88-93.
Tolle, S.W., et al., “A Prospective Study of the Efficacy of the Physician Orders for Life Sustaining Treatment,” Journal of the American Geriatrics Society 46 (1998): 1097-102.
Vermont Ethics Network, Vermont Voices on Care of the Dying (Montpelier, Vt.: Vermont Ethics Network, 1997).
Webb, W., The Good Death: The New American Search to Reshape the End of Life (New York: Bantam, 1997).
Welch, L.C., J.M Teno, and V. Mor, “End-of-Life Care in Black and White: Race Matters for Medical Care of Dying Patients and Their Families,” Journal of the American Geriatrics Society 53 (2003): 1145-53.
Winzelberg, G.S., L.C. Hanson, and J.A. Tulsky, “Beyond Autonomy: Diversifying End-of-Life Decision-Making Approaches to Serve Patients and Families,” Journal of the American Geriatric Society 53 (2005): 1046-50.
Wolpe, P., “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, eds. R. DeVries and J. Subedi (Upper Saddle River, N.J.: Prentice Hall, 1998).
World Health Organization, Cancer Pain Relief and Palliative Care (Geneva, Switzerland: World Health Organization, 1990).
World Health Organization, National Cancer Control Programs, Policies and Managerial Guidelines (Geneva, Switzerland: The World Health Organization, 2002).
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Last Updated: 22 March 2007