Innovations in End-of-Life Care
|Continuing the Conversation about Advance Care Planning: Part 2
May-June 2003, Vol. 5, No. 3
|Read more about this topic|
Selected articles by contributors to this issue:
Gillick M. Lifelines: Living Longer, Growing Frail, Taking Heart. New York: W.W. Norton & Co., 2002.
Gillick M. Tangled Minds: Understanding Alzheimer's Disease and Other Dementias. New York: Plume, 1999.
Gillick M. Choosing Medical Care in Old Age: What Kind, How Much, When to Stop. Cambridge, MA: Harvard University Press, 1996.
Gillick M, Berkman S, Cullen L. A patient-centered approach to advance medical planning in the nursing home. Journal of the American Geriatrics Society. 1999;47(2):227-230.
The SUPPORT study:
The SUPPORT study and the many articles about it inform current thinking about advance care planning so profoundly, that we thought it helpful to cite the first SUPPORT paper, as well as two supplements and a recent book chapter devoted to further exploration of its results. There are many more additional publications about SUPPORT, but these three references are a solid beginning for interested scholars and clinicians.
The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Outcomes and Risks of Treatments (SUPPORT). Journal of the American Medical Association. 1995;274:1591-1598.
Dying Well in the Hospital: The Lessons of SUPPORT. Hastings Center Report. Special Supplement. 1995;25(6):S1-S36.
Findings from SUPPORT and HELP. Supplement to Journal of the American Geriatrics Society. 2000;48(5):S1-S233.
Solomon MZ. Research to Improve End-of-Life Care in the United States: Toward a More Behavioral and Ecological Paradigm. In Issues in Palliative Care Research, R Portenoy, E Bruera (eds.). New York: Oxford University Press, 2003, 275-291.
Other targeted references:
Advance Care Planning: Preferences for Care at the End of Life. Research in Action, Issue 12. AHRQ Publication Number 03-0018, March 2003. Agency for Healthcare Research and Quality, Rockville, MD. www.ahrq.gov/research/endliferia/endria.htm.
Baker ME. Economic, political and ethnic influences on end-of-life decision-making: A decade in review. Journal of Health & Social Policy. 2002;14(3):27-39.
Barnard D. Advance care planning is not about "getting it right." Journal of Palliative Medicine. 2002;5(4):475-481.
Barnes LL, Plotnikoff GA. Fadiman and beyond -- the dangers of extrapolation. Bioethics Forum. 2001;17(1):32-40.
Basile CM. Patient and community education in advance directives. Critical Care Nursing Clinics of North America. 2002;14(2):215-217.
Berry SR, Singer PA. The cancer specific advance directive. Cancer. 1998;82(8):1570-1577.
Blank K. Respectful decisions at the end of life. American Journal of Geriatric Psychiatry. 2002;10(4):362-364.
Bradley EH, Blechner BB, Walker LC, Wetle TT. Institutional efforts to promote advance care planning in nursing homes: Challenges and opportunities. Journal of Law, Medicine & Ethics. 1997;25(2/3):150-159.
Briggs L, Colvin E. The nurse's role in end-of-life decision-making for patients and families. Geriatric Nursing. 2002;23(6):302-310.
State Initiatives in End-of-Life Care. Focus: Advance Care Planning: Part 1. Approaches for Patients from Marginalized Groups. 2001;12. Available for download at www.lastacts.org/files/publications/unbefriended-final.pdf.
State Initiatives in End-of-Life Care. Focus: Advance Care Planning: Part 2. Guardianship: A Neglected Piece of the Surrogate Decisionmaking Picture. 2002;13. Available for download at www.lastacts.org/files/publications/acp2guardianship-final.pdf.
Candib LM. Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Families, Systems & Health. 2002;20:213-228.
Cohen-Mansfield J. Development of a framework to encourage addressing advance directives when resources are limited. Journal of Aging and Health. 2002;14(1):24-41.
Cultural Diversity. Bioethics Forum. 2001;17(1):7-56.
Curtis JR. Communicating with patients and their families about advance care planning and end-of-life care. Respiratory Care. 2000;45(11):1385-1394; discussion 1394-1398.
Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement. Critical Care Medicine. 2001;29(2 Suppl):N26-33.
Day LJ. Decision making by surrogates. Critical Care Nurse. 2000;20(2):107-111.
Ditto P, Danks J, Smucker W, Bookwala J, Coppola K, Dresser R, Fagerlin A, Gready R, Houts R, Lockhart L, Zyzanski S. Advance directives as acts of communication: A randomized controlled trial. Archives of Internal Medicine. 2001;161:421-430.
Drought TS, Koenig BA. "Choice" in end-of-life decision making: Researching fact or fiction? Gerontologist. 2002;42(Spec No 3):114-128.
Farrell PM, Hammes B. A promise for palliative care at the end of life. Wisconsin Medical Journal. 2001;100(9):59, 66.
Fins JJ. Commentary: From contract to covenant in advance care planning. Journal of Law, Medicine & Ethics. 1999;27:46-51.
Fins JJ, Solomon MZ. Communication in intensive care settings: The challenge of futility disputes. Critical Care Medicine. 2001;29(2 Suppl):N10-15.
Fins JJ, Schwagger Guest R, Acres CA. Gaining insight into the care of hospitalized dying patients: An interpretative narrative analysis. Journal of Pain and Symptom Management. 2000;20(6):399-407.
Fischer GS, Arnold RM, Tulsky JA. Talking to the older adult about advance directives. Clinics in Geriatric Medicine. 2000;16(2):239-254.
Freedman, B. Offering truth: One ethical approach to the uninformed cancer patient. Archives of Internal Medicine. 1993;153(5):572-6.
Glajchen M, Zuckerman C. Resolving conflict and making decisions. Journal of Palliative Medicine. 2001;4(2):221-225.
Hahn ME. MSJAMA. Advance directives and patient-physician communication. Journal of the American Geriatrics Society. 2003;289(1):96.
Hammes B. What does it take to help adults successfully plan for future medical decisions? Journal of Palliative Medicine. 2001;4:453-456.
Hammes BJ, Romer AL. The lessons from Respecting Your Choices: An interview with Bernard Hammes. Innovations in End-of-Life Care. 1999;1(1) www2.edc.org/lastacts/archives/archivesJan99/featureinn.asp.
Hammes BJ, Rooney BL: Death and end-of-life planning in one midwestern community. Archives of Internal Medicine. 1998;158:383-390.
Howes MC. Cancer isn't the only malignant disease. Terminal care should be discussed well in advance. British Medical Journal. 2002;324(7344):1036.
Hines S, Glover J, Babrow A, Holley J, Badzek L, Moss A. Improving advance care planning by accommodating family preferences. Journal of Palliative Medicine. 2001;4:481-489.
Kolarik RC, Arnold RM, Fischer GS, Tulsky JA. Objectives for advance care planning. Journal of Palliative Medicine. 2002;5(5):697-704.
Kuhl DR, Wilensky P. Decision making at the end of life: A model using an ethical grid and principles of group process. Journal of Palliative Medicine. 1999;2(1):75-86.
Lapine A, Wang-Cheng R, Goldstein M, Nooney A, Lamb G, Derse A. When cultures clash: Physician, patient, and family wishes in truth disclosure for dying patients. Journal of Palliative Medicine. 2001;4:475-480.
Leland J. Advance directives and establishing the goals of care. Primary Care. 2001:28(2):349-363.
Lynn J. Why I don't have a living will. Law, Medicine & Health Care. 1991;19:101-104.
Martin DK, Thiel EC, Singer PA. A new model of advance care planning: Observations from people with HIV. Archives of Internal Medicine. 1999;159:86-92.
Midwest Bioethics Center Staff and Members of the Cultural Diversity Task Force. Healthcare narratives from diverse communities--a self-assessment tool for healthcare providers. Bioethics Forum. 2002;17(3/4 Suppl):SS3-SS23.
Moss AH. The need for more physician communication with patients/families facing the end of life. West Virginia Medical Journal. 2001;97(4):206-208.
Norton SA, Talerico KA. Facilitating end-of-life decision-making: Strategies for communicating and assessing. Journal of Gerontological Nursing. 2000;26(9):6-13.
Perkins HS, Geppert CM, Gonzales A, Cortez JD, Hazuda HP. Cross-cultural similarities and differences in attitudes about advance care planning. Journal of General Internal Medicine. 2002;17(1):27-39.
Prendergast TJ. Advance care planning: Pitfalls, progress, promise. Critical Care Medicine. 2001;29(2 Suppl):N34-39.
Quill T. Initiating end-of-life discussion with seriously ill patients: Addressing the "elephant in the room." Journal of the American Medical Association. 2000;284:2502-2507.
Rantz M. Tough decisions: Helping patients' families choose long-term care. American Journal of Nursing. 2002;34(4):20.
Roter DL, Larson S, Fischer GS, Arnold RM, Tulsky JA. Experts practice what they preach: A descriptive study of best and normative practices in end-of-life discussions. Archives of Internal Medicine. 2000;160:3477-3485.
Schwartz CE, Wheeler HB, Hammes BJ et al. Early intervention in planning end-of-life care with ambulatory geriatric patients: Results of a pilot study. Archives of Internal Medicine. 2002;162:1611-1618.
Siegler EL, Levin BW. Physician-older patient communication at the end of life. Clinics in Geriatric Medicine. 2000;16)1):175-204.
Singer PA. Disease-specific advance directives. Lancet. 1994;344(8922):594-596.
Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M, Mendelssohn DC: Reconceptualizing advance care planning from the patient's perspective. Archives of Internal Medicine. 1998;158:879-884.
Sullivan MD. The illusion of patient choice in end-of-life decisions. American Journal of Geriatric Psychiatry. 2002;10(4):365-372.
Trusting Our Differences. Bioethics Forum. 2002;17(3/4):45.
Vinen J. Advance care planning and advance directives: Time for action. Internal Medicine Journal. 2002; 32(9-10):435-436.
|Last Updated: May 15th, 2003|
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