End of Life Issues:Managing Dying, Death, & Beyond References and Resources

Developd by Tom Smith, Ph.D.

GENERAL

American Psychological Association: End of Life Resources
http://www.apa.org/topics/death/end-of-life.aspx

Report of the Children and Adolescents Task Force of the Ad Hoc Committee on End of Life Issues:
http://www.apa.org/pi/aids/programs/eol/end-of-life-report.pdf

APA End of Life Issues Glossary of Terms
http://www.apa.org/topics/death/end-of-life.aspx

Open directory Project: End of Life
http://dmoz.org/Society/Issues/End-of-Life/

Soros Foundation Open Society Institute: Project on Death in America
http://www.soros.org/resources/articles_publications/publications/pdia_20040101

Death an Inquiry into Man’s Mortal Weakness: General site put together by a group of high school students:
http://library.thinkquest.org/16665/cgi-bin/index.cgi

Growth House, Inc., provides content development and syndication services for organizations working with death and dying issues.
http://www.growthhouse.org/

The Natural Death Centre (United Kingdom)
http://www.naturaldeath.org.uk/

The Death Clock: How long do you have to live?
http://www.deathclock.com/

Guide to Sociological Thanatology (An almost entertaining site looking at the many faces and aspects of dying and death. There are many links and the site has received numerous awards for content)Professor Michael C. Kearl: Trinity University, San Antonio, Texas: Department of Sociology & Anthropology
http://www.trinity.edu/~mkearl/death-2.html#ho

FACING DEATH

Seeing the Difference: A Project on Viewing Death and Dying in Interdisciplinary Perspective
http://townsendcenter.berkeley.edu/sites/default/files/publications/OP24_SeeingtheDiff.pdf

“Before I Die” PBS Documentary:
http://www.thirteen.org/bid/

The End of Life: Exploring Death in America: NPR Transcripts and audio
http://www.npr.org/programs/death/trns.html

Mental Health: A Report of the Surgeon General: Chapter 5 Older Adults and Mental Health
http://www.surgeongeneral.gov/library/mentalhealth/chapter5/sec1.html

Neimeyer, R. A., & Van Brunt, D. (1995). Death anxiety. In Wass, H. & Neimeyer, R. A. (Eds.), Dying: Facing the facts (3rd ed.; pp. 49-88). Philadelphia, PA: Taylor & Francis.

Deaths by Mass Unpleasantness: Estimated Totals for the Entire 20th Century
http://users.erols.com/mwhite28/warstat8.htm

Nuland, Sherwin B. (1993). How We Die: Reflections on Life’s Final Chapter. New York: Alfred A. Knopf.

The Surgeon General’s Call To Action To Prevent Suicide
http://www.surgeongeneral.gov/library/calltoaction/default.htm

The Coming Plague by Laurie Garrett
http://www.lauriegarrett.com/index.php/en/books/2586/2747/

PALLIATIVE AND HOSPICE CARE

National Consensus Project for Quality Palliative Care:
http://www.nationalconsensusproject.org/

NCP guidelines Summary
http://www.nationalconsensusproject.org/Summary.pdf

NCP Guidelines Full Text
http://www.nationalconsensusproject.org/Guideline.pdf

Hospice foundation of America
http://www.hospicefoundation.org/

General Hospice Info: Services, Patients, Children, Caregivers, Bereavement
http://www.hospicenet.org/

National Hospice and Palliative Care Organization:
http://www.nhpco.org/templates/1/homepage.cfm

International Association of Hospice and Palliative Care
http://www.hospicecare.com/

Center to Advance Palliative Care (CAPC):
http://www.capc.org/

Get Palliative Care
http://www.getpalliativecare.org/

American Academy of Hospice and Palliative Medicine
http://www.aahpm.org/

Clinical Practice Guidelines for Quality Palliative Care. 2004. A publication of the National Consensus Project for Quality Palliative Care, One Penn Center West, Suite 229, Pittsburgh, PA, 15276

A Guide To Primary Care For People With HIV/AIDS, 2004 edition
http://hab.hrsa.gov/deliverhivaidscare/files/primary2004ed.pdf

Riggle, E. D. B., & Rostosky, S. S. (2005). For better or for worse: Psycholegal soft spots and advance planning for same-sex couples. Professional Psychology: Research and Practice, 36, 90-96.

Resources in Spanish
http://www.cancer.gov/espanol/recursos/hojas-informativas

Issues of Access and Variability in Health Care at the End of Life:
http://www.apa.org/topics/death/end-of-life.aspx

Palliative Care Organizations:
http://www.npcrc.org/resources/resources_list.htm?cat_id=1235

CARE GIVERS

The Dying Process: A Guide for Caregivers
http://www.hospicefoundation.org/

Lynn, J. and Harrold, J. (1999). Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University Press.

J. L. Werth, Jr., & D. Blevins (Eds.), Psychosocial issues near the end of life: A resource for professional care providers. Washington, DC: American Psychological Association.

Haley, W. E., Larson, D. G., Kasl-Godley, J., Neimeyer, R. A., & Kwilosz, D. M. (2003). Roles for psychologists in end-of-life care: Emerging models of practice. Professional Psychology: Research and Practice, 34, 626-633.

Katz, R. S., & Johnson, T. A. (2006). When professionals weep: Emotional and countertransference responses in end-of-life care. New York: Routledge.

Werth, J. L., Jr., Gordon, J. R., & Johnson, R. (2002). Psychosocial issues near the end of life. Aging and Mental Health, 6, 402-412.

GRIEF AND BEREAVEMENT

Association for Death Education & Counseling:
http://www.adec.org

Basic Bereavement Royal College of Psychiatrists
http://www.rcpsych.ac.uk/mentalhealthinformation/ mentalhealthproblems/bereavement/bereavement.aspx

Emotions during bereavement
http://www.rcpsych.ac.uk/mentalhealthinformation/mentalhealthproblems/bereavement.aspx

Death in the Family Helping Children to Cope Royal College of Psychiatrists
http://www.rcpsych.ac.uk/mentalhealthinformation/mentalhealthandgrowingup/15deathinthefamily.aspx

Bereavement Info Pack: Suicide & Sudden Death RCP
http://www.rcpsych.ac.uk/PDF/bereavement.pdf

Sources of Support during bereavement:
http://www.rcpsych.ac.uk/mentalhealthinformation/mentalhealthproblems/bereavement.aspx

Anticipatory Grief: Preparing for the Death of a Loved One
http://dying.about.com/od/filmsandvideos/qt/grief_video.htm

National Organization of Parents of Murdered Children:
http://www.pomc.org/

Counseling For Loss & Life Changes, Inc.Jane Bissler’s site offers, under Articles, reprints of about 30 short writings and links to perhaps fifty more
http://www.counselingforloss.com/

Widownet: A website for widows and widowers
http://www.widownet.org/

Lynn, J. and Harrold, J. (1999). Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University Press.

Casarett, D., Kutner, J.S., Abrahm, J. (2001). “Life after Death: A Practical Approach to Grief and Bereavement.” Annals of Internal Medicine, Vol. 134, No. 3.

Zilberfein, F. (1999). “Coping with Death: Anticipatory Grief and Bereavement.” Generations, Vol. XXIII, No. 1, 1999

Loss, Grief and Bereavement:
http://www.nci.nih.gov/cancertopics/pdq/supportivecare/bereavement/patient/allpages

Pérdida, Pena y Duelo:
http://www.cancer.gov/espanol/pdq/cuidados-medicos-apoyo/duelo/patient/allpages

Various articles on Grief and Bereavement
http://www.psycom.net/depression.central.grief.html

Beyond Indigo: Changing the way you feel about grief and lossMessage boards, Newsletters, Tools, Books, Channels, Stories, Memorials
http://www.beyondindigo.com/

GriefNet: Internet Support Group
http://www.griefnet.org

Funerals and Memorials: consumer website
http://www.funerals.org

CROSS-CULTURAL ISSUES

Hospice: End-of-Life Basic Questions and Answers: Resources in Spanish:
http://www.cancer.gov/espanol/recursos/hojas-informativas

Braun, K. L., Pietsch, J. H., & Blanchette, P. L. (Eds.). (2000). Cultural issues in end-of-life decision making. Thousand Oaks, CA: Sage

Irish, D. P., Lundquist, K. F., & Nelsen, V. J. (Eds.). (1993). Ethnic variations in dying, death, and grief. Philadelphia, PA: Taylor & Francis.

Kemp, C. (2005). Cultural issues in palliative care. Seminars in Oncology Nursing, 21, 44-52.

Kirchberg, T. M., Neimeyer, R. A., & James, R. K. (1998). Beginning counselors’ death concerns and empathic responses to client situations involving death and grief. Death Studies, 22, 99-120.

Klessig, J. (1992). The effect of values and culture on life-support decisions. Western Journal of Medicine, 157, 316-322.

Koenig, B. A., & Gates-Williams, J. (1995). Understanding cultural differences in caring for dying patients. Western Journal of Medicine, 163, 244-249.

Kwak, J., & Haley, W. E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 45, 634-641.

MORAL AND ETHICAL CONSIDERATIONS

The Report to the Board of Directors from the APA Working Group on Assisted Suicide and End-of-Life Decisions:
http://www.apa.org/PUBS/INFO/REPORTS/ASEOL.ASPX

Kastenbaum, R. (2001). Death, Society, and Human Experience, 7th edition. Boston: Allyn & Bacon.

Kevorkian, J. (1991). Prescription: Medicide. Buffalo, NY: Prometheus Press.

Kleespies, P. M. (2004). Life and death decisions: Psychological and ethical considerations in end-of-life care. Washington, DC: American Psychological Association.

The World Federation of Right To Die Societies:
http://www.worldrtd.net/

Exit International is the pro-choice voluntary euthanasia/ assisted suicide organisation founded by Dr. Philip Nitschke:
http://www.exitinternational.net/

Euthanasia Research and Guidance Organization (Hemlock Society founder Derek Humphry):
http://www.finalexit.org/

The World Federation of Right To Die Societies:
http://www.worldrtd.net/

International Task Force on Euthanasia and Assisted Suicide
http://www.internationaltaskforce.org /

Roscoe, L. A., Osman, H., & Haley, W. E. (2006). Implications of the Schiavo case for understanding family caregiving issues at the end of life. Death Studies, 30, 149-161.

Rosenfeld, B. (2004). Assisted suicide and the right to die: The interface of social science, public policy, and medical ethics. Washington, DC: American Psychological Association.

Spiro, H. M., Curnen, M. G. M., & Wandel, L. P. (Eds.). (1996). Facing death. New Haven, CT: Yale University Press.

Responding to Patients in the Persistent Vegetative State:
http://www.xenos.org/ministries/crossroads/donal/pvs.htm

Life or death? Twice she had to make critical decision:
http://findarticles.com/p/articles/mi_m1141/is_22_41/ai_n13610516

Wanzer, S. and GlenMullen, J. (2007). To Die Well: Your Right to Comfort, Calm and Choice in the Last Days of Life

SPIRITUAL CONSIDERATONS

Rinpoche, S. (1992). The Tibetan Book of Living and Dying, edited by Gaffney, P and Harvey, A. San Francisco: Harper.

Namkhai Norbu, Trans & Ed. Reynolds, John (1984, 1987). The Cycle of Day and Night, An Essential Tibetan Text on the Practice of Contemplation. Barrytown, NY: Station Hill Press.

Watanabe,-Tsuneo (2003). “Lucid Dreaming: Its Experimental Proof and Psychological Conditions”. Journal-of-International-Society-of-Life-Information-Science 21 (1): 159-162.

LaBerge, S.(1990). “Lucid Dreaming: Psychophysiological Studies of Consciousness during REM Sleep.” In Bootzen, R. R., Kihlstrom, J.F. & Schacter, D.L., (Eds.): Sleep and Cognition. Washington, D.C.: American Psychological Association, pp. 109 – 126.