Advance Care Planning
Articles
(2001). Thinking ahead: Advance planning for end-of-life care. Available for download at http://www.lastacts.org/files/misc/THINKINGAHEAD.pdf.
(2001). State initiatives in end-of-life care. Focus: Advance care planning--Part 1. Approaches for patients from marginalized groups: Twelfth
in a series of briefs profiling promising new policies and practices throughout the country in end-of-life care. To order call 816-842-7110, or available for download at http://www.lastacts.org/files/publications/unbefriended-final.pdf.
Baker, M. (2002). Economic, political and ethnic influences on end-of-life decision-making: A decade in review. J Health Soc Policy 14(3): 27-39.
PubMed Abstract.
Blackhall, L., Frank, G., Murphy, S., Michel, V., Palmer, J. & Azen, S. (1999). Ethnicity and attitudes towards life sustaining technology. Social Science & Medicine 48(12): 1779-1789.
PubMed Abstract.
Briggs, L. (2003). Shifting the focus of advance care planning: Using an in-depth interview to build and strengthen relationships. Innovations in End-of-Life Care 5(2) www2.edc.org/lastacts.
Caralis, P., Davis, B., Wright, K. & Marcia, E. (1993). The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. Journal of Clinical Ethics 4(2): 155-65.
PubMed Abstract.
Cooper, J., Weber, J., Evans, P. & Juozapavicius, K. (2001). End-of-life decisions: physicians as advocates for advance directives. J Am Osteopath Assoc 101(10): 571-5.
PubMed Abstract.
Curtis, J. (2000). Communicating with patients and their families about advance care planning and end-of-life care. Resp Care 45(11): 1385-94.
PubMed Abstract.
Dupree, C. (2000). The attitudes of black Americans toward advance directives. J Transcultural Nurs 11(1): 12-18.
PubMed Abstract.
Ebell, M. (1994). Practical guidelines for do-not-resuscitate orders. American Family Physician 50(6): 1293-9, 1303-4.
PubMed Abstract.
Ersek, M., Kagawa-Singer, M., Barnes, D., Blackhall, L. & Koenig, B. (1998). Multicultural considerations in the use of advanced directive. Onc Nurs Forum 25(10): 1683-89.
PubMed Abstract.
Fischer, C., Atkins, K., Cedeno, S. & Sears, M. (1996). Advance directives: Discussion of death and dying issues between physicians and their HIV positive patients in medically underserved communities in New York City. Meeting Abstract, Int Conf AIDS 11(2): 431.
Hines, S, Glover, J., Babrow, A., Holley, J., Badzek, L. & Moss, A. (2001). Improving advance care planning by accommodating family preferences. J Palliat Med 4(4): 481-9.
PubMed Abstract.
Ho, V., Thiel, E., Rubin, H. & Singer, P. (2000). The effect of advance care planning on completion of advance directives and patient satisfaction in people with HIV/AIDS. AIDS Care 12(1): 97-108.
PubMed Abstract.
Kelly, C. (1999). Tips on talking to your patients about advance directives. ACT-ASIM Observer Mar 99: Available on their website. www.acponline.org/journals/news/mar99/advdir.htm.
Klessig, J. (1992). The effect of values and culture on life support decisions. West J Med 157(3): 316-322.
PubMed Abstract.
Lapine, A., Wang-Cheng, R., Goldstein, M., Nooney, A., Lamb, G. & Derse, A. (2001). When cultures clash: Physician, patient, and family wishes in truth disclosure for dying patients. J Palliat Med 4(4): 475-80.
PubMed Abstract.
Lofmark, R. & Nilstun, T. (1993). Do-not-resuscitate orders--should the patient be informed? J Int Med 241(5): 421-5.
PubMed Abstract.
Martin, D., Thiel, E. & Singer, P. (1999). A new model of advance care planning: Observations from people with HIV. Arch Intern Med 159(1): 86-92.
PubMed Abstract.
Molloy, D., Guyatt, G., Russo, R., Goeree, R., O'Brien, B., Bedard, M., Willan, A., Watson, J., Patterson, C., Harrison, C., Standish, T., Strang, D., Darzins, P., Smith, S. & Dubois, S. (2000). Systematic implementation of an advance directive program in nursing homes: A randomized controlled trial. JAMA 283(11): 1437-44.
PubMed Abstract.
Murphy, S., Azen, S., Frank, G., Michel, V. & Blackhall, L. (1997). Ethnicity and advance care directives. J Law Med Eth 24(2): 421-5.
Pearlman, R., Cole, W., Patrick, D., Starks, H. & Cain, K. (1995). Advance care planning: Eliciting patient preferences for life-sustaining treatment. Patient Education and Counseling 26: 353-361.
PubMed Abstract.
Perkins, H. (1993). Autopsy decisions: The possibility of conflicting cultural attitudes. J Clin Ethics 4(2): 145-54.
PubMed Abstract.
Perkins, H., Geppert, C., Gonzales, A., Cortez, J. & Hazuda, H. (2002). Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med 17(1): 48-57.
PubMed Abstract.
Rotheram-Borus MJ, Lester P, Wang P, and Shen Q (2004). Custody plans among parents living with human immunodeficiency virus infection. Arch Pediatr Adolesc Med 158: 327-332. www.archpediatrics.com.
PubMed Abstract.
Singer, P., Thiel, E., Salit, I., Flanagan, W. & Naylor, C. (1997). The HIV-specific advanced directive. J Gen Int Med 12(12): 729-35.
PubMed Abstract.
Teno, J. (2000). Advance directives for nursing home residents: Achieving compassionate, competent, cost-effective care. JAMA 283(11): 1481-2.
PubMed Abstract.
Teno, J., Fleishman, J., Brock, D. & Mor, V. (1990). The use of formal prior directives among patients with HIV-related diseases. J Gen Int Med 5: 490-94.
PubMed Abstract.
Tucker, R. (1994). Patient self-determination act: An African American perspective. Cambridge Qtrly of Healthcare Ethics 3(3): 417-19.
PubMed Abstract.
Voltz, R., Akabayashi, A., Reese, C., Ohi, G. & Sass, H. (1998). End-of-life decisions and advance directives in palliative care: A cross-cultural survey of patients and health care professionals. Journal of Pain and Symptom Management 16(3): 153-162.
PubMed Abstract.
Waters, C. (2000). End-of-life care directives among African Americans: Lessons learned - A need for community-centered discussion and education. J Community Health Nurs 17(1): 25-37.
PubMed Abstract.
Waters, C. (2001). Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qual Health Res 11(3): 385-98.
PubMed Abstract.
Books
Akabayashi, A. & Voltz, R. (2001). Advance directives in different cultures. In: Bruera, E. & Portenoy, R., (Eds.). Topics in palliative care, volume 5. New York, NY: Oxford University Press.
Beckett, A. (1998). End-of-life decisions: A psycho social perspective. In: Steinberg, M. & Younger, S., (Eds.). End-of-life decisions in AIDS. Washington, DC: American Psychiatric Press, Inc.
Haeckler, C., Moseley, R. & Vawter, D. (1989). Advance directives in medicine: Legal, ethical and medical considerations. New York: Praeger Press.
Kaufert, J., O'Neil, J. & Koolage, W. (1991). The cultural and political context of informed consent for Native Canadians. In: Postl, B., Gilbert, P., Goodwill, J., et al., (Eds.). Circumpolar Health 90: Proceedings of the 8th International Congress on Circumpolar Health, Whitehorse, Yukon, May 20-25, 1990. Winnepeg, Manitoba: University of Manitoba Press.
Midwest Bioethics Center (1999). Caring conversations - Making your wishes known for end-of-life care.. A workbook designed to assist patients and families share meaningful conversation while making practical preparations for end-of-life decisions. Available to download free online or call (816) 221-1100 to order.. www.midbio.org/workbook.pdf.
Pearlman, R., Starks, H., Cain, K., Cole, W. & Rosengren, D. Your life, your choices. A workbook designed to assist patients and families with developing advance directives. www.hsrd.research.va.gov/publications/your_life/.
Videos
Supportive Care of the Dying
www2.edc.org/lastacts/archives/archivesMarch03/resources.asp.
Person to Person: Discovering Patient Wishes in Planning for End of Life - A Tool for Physicians.
Websites
Bioethics - eduserv.hscer.washington.edu/bioethics. The University of Washington School of Medicine bioethics website has discussion, case examples, and resource information on ethical issues in Advance Care Planning.
NOLO - www.nolo.com. A comprehensive, easy to understand resource center for legal issues. Useful information in Wills and Estate Planning, Health Care Directives, and Power of Attorney including encyclopedia articles, FAQS, and a Q&A section.
US Living Will Registry - www.uslivingwillregistry.com. Allows electronic storage of patient advance directives, available to health care professionals 24 hours a day by phone or via the internet. They also provide advance directive storage services for health care professionals and hospitals. Information available in English and Spanish.
WA: Aging and Adult Services Administration - www.AASA.DSHS.wa.gov. The website for Washington's DSHS Aging & Adult Services Administration. It contains FAQs on Advance Directives as well as sample forms for Washington State.
WA: Northwest Justice Project - www.nwjustice.org. The Northwest Justice Project has FAQs and downloadable Advance Directives for Washington State. It also has Spanish and Russian translations of both the information and the forms, as well as a list of their statewide offices.
WA: Volunteer Attorneys for People with AIDS (VAPWA) - www.kcba.org/VAPWA/vapwa.htm. Volunteer Attorneys for People with AIDS provides legal information and assistance to low-income PWAs. Its website has online information about Advance Directives, including downloadable forms. It also has a list of legal resources throughout Washington State.
Last Updated 6/30/04 at 11:20 AM
