• Caregiving
• Hospice
• Planning and Decision Making
• Government Agencies
• Sources for Seniors
• Medical Ethics and Patients' Rights
• Death and Dying
• End-of-Life Issues
• Bereavement
• Spiritual and Religious Issues

Online Resources

CAREGIVING

National Association for Home Care
Extensive listings of publications and videos for professional and general audience, plus searchable directory of over 19,500 home care and hospice agencies.
www.nahc.org

The San Francisco Examiner: The Caregivers
Personal stories about issues of chronic care and adult children as caregivers, plus resource listings.
www.sfgate.com/examiner/caregivers/index.html

Shepherd's Centers of America
Caregiving programs -- designed and administered by volunteer older adults -- for the homebound elderly and nursing home residents; site lists the 95 centers in 26 states and one in Canada.
www.senior.com/shepherd.html

Project Nightlight
Volunteer-based organization with mission of compassionate visiting to the dying; site offers description of outreach programs and training workshops, bulletin board, FAQ about death.
www.nightlight.org

Interfaith Volunteer Caregivers
News and information about this national network of caregiving programs, with online forum for sharing personal stories.
www.nfivc.org

National Family Caregivers Association
A 1994 NFCA survey found that there are approximately 18 million family caregivers in the United States; the organization addresses their needs with outreach programs and a newsletter.
www.ravens-nest.com/nfca

Alzheimer's Association
National voluntary organization dedicated to research, education, and support services; site features online caregiver publications, including a brochure on the 10 warning signs of Alzheimer's.
www.alz.org

Alzheimer Web
Provides basic information, research developments, links to international Alzheimer's resources, and chat forum for caregivers.
werple.mira.net.au/~dhs/ad.html

The Alzheimer Page
A place to post and read personal stories about coping with caregiving to Alzheimer's patients.
www.biostat.wustl.edu/hyperlists/alzheimer

Laboratory of Genetics and Aging: Alzheimer's Disease Research
Maintained by Massachusetts General Hospital to present latest research; includes online journal, Alzheimer's Disease Review.
dem0nmac.mgh.harvard.edu/alzheimers/alzheimer.html

The Body
Provides information from more than thirty HIV/AIDS organizations, with extensive listings of hotlines and other resources, plus forum for asking questions of the experts in the field.
www.thebody.com

American Cancer Society
Overview of the organization, along with information about the disease, and clickable map to locate programs in each state of the union.
www.cancer.org

American Association of Critical-Care Nurses
The AACN, 76,000 members strong, conducts education programs for critical care nurses; site includes bookstore and events calendar.
www.aacn.org

American Medical Association
Sponsored by the 150-year-old association of physicians. Includes an "On-line Doctor Finder," searchable directory of JAMA articles and links to other medical sites.
www.ama-assn.org

HOSPICE

The Boston Globe: Choosing a Good Death
An in-depth series of stories, about five individuals facing death, with focus on hospice in end-of-life care.
www.boston.com/globe/hospice/series.htm

National Hospice Organization
Founded in 1978, NHO is the oldest and largest nonprofit public benefit organization devoted to hospice care. Site features searchable database to locate hospices throughout the United States.
www.nho.org

Hospice Foundation of America
Supports the hospice concept through educational programs and grants; site includes online version of Journeys, a newsletter to help individuals deal with grief and loss.
www.hospicefoundation.org

Hospice Web
Excellent introduction and overview; full of useful information.
www.teleport.com/~hospice

PLANNING AND DECISION MAKING

Philadelphia Inquirer Series: Seeking a Good Death
Five-article series addresses the rights of the dying and traces personal stories about end-of-life decision making.
www.phillynews.com/packages/end_of_life

Choice in Dying
Explanation of advance directives, with forms for every state available by downloading or mail order.
www.choices.org

Eldercare Web
An array of information with focus on economic impacts, such as feasibility of purchasing long-term care insurance.
www.elderweb.com

Bioethics Center of the University at Buffalo
A guide to health care decision making, including advance directives, life sustaining treatment, and legal issues.
freenet.buffalo.edu/sigs/links/bioethic/.index.html

GOVERNMENT AGENCIES

Medicare & Medicaid Agency
Information, fact sheets, statistics and latest regulations, presented by the Health Care Financing Administration, federal agency that administers the programs.
www.hcfa.gov

Social Security Online
The official website of the Social Security Administration, providing information, forms, and resources.
www.ssa.gov

National Institute on Aging
Lists and describes educational publications on medical and scientific aspects of aging, with ordering instructions.
www.nih.gov/nia

SOURCES FOR SENIORS

American Association of Retired People
Wealth of information on caregiving, advance directives, and insurance, with listings of national and community-level resources.
www.aarp.org/index.html

Seniors-Site
Well-organized with much practical information for seniors, their families, and caregivers, categorized on a site map in a user friendly way.
seniors-site.com

MEDICAL ETHICS AND PATIENTS' RIGHTS

The Center for Bioethics at the University of Pennsylvania
Discussion of medical ethical issues for professionals and non-professionals, with special Bioethics for Beginners section.
www.med.upenn.edu/~bioethic

MacLean Center for Clinical Medical Ethics at the University of Chicago
Presents spectrum of views on practical, ethical concerns confronting health care professionals and patients.
ccme-mac4.bsd.uchicago.edu/CCME.html

The Institute for Jewish Medical Ethics
Addresses principles of Jewish law and scholarship in relation to the general practice of medicine.
www.hia.com/hia/medethic

DEATH AND DYING

Last Acts
Information about Last Acts, a campaign to improve care and caring at the end of life, is available on the Robert Wood Johnson Foundation's Web site. On the site, you'll find a directory of resources, press releases, a calendar of conferences and other events, and recent reports.
www.lastacts.org

Project on Death in America
Far-ranging investigation of coming to terms with death and dying in contemporary America.
www.soros.org/death.html

Project on Death in America Reader
International bibliography of academic and general audience articles about death and dying issues.
www.soros.org/death/pdiaread.html

Growth House
Detailed, extensive survey of key concerns about death and dying; describes, rates, and reviews related sites.
www.growthhouse.org

END-OF-LIFE ISSUES

DeathNet
Rich archive of "right-to-die" materials, services, and resources. Includes extensive information on living wills and an online bookstore with over 3,000 titles on end-of-life issues.
www.islandnet.com/deathnet

Euthanasia Research and Guidance Organization (ERGO)
Compendium of information and latest news on "right-to-die" issues, plus glossary of terms.
www.islandnet.com/~deathnet/ergo.html

International Anti-Euthanasia Task Force
Extensive information and background materials on euthanasia, assisted suicide, advance directives, disability rights, and pain control.
www.iaetf.org

Not Dead Yet
Disability rights organization that strongly opposes the legalization of assisted suicide. Site contains articles, legal briefs, links, and more.
www.acils.com/NotDeadYet

Dying Well Network
Actively supports the right of the terminally ill to choose the time and method of death, within the bounds of the law; site offers detailed description of the program and procedures.
www.ior.com/~jeffw/homepage.htm

Compassion in Dying
Provides counseling, emotional support, and information for terminally ill patients about intensive pain management, comfort or hospice care, and rational suicide.
www.thebody.com/cid/cidpage.html

BEREAVEMENT

Bereavement and Hospice Support Netline
A comprehensive directory of bereavement programs and support groups across the United States.
ube.ubalt.edu/www/bereavement

Sudden Infant Death Syndrome Network
Support resources for families and others touched by tragedy of SIDS.
sids-network.org

SPIRITUAL AND RELIGIOUS ISSUES

The Living/Dying Project
About bringing traditional spiritual wisdom to the end of life through educational programs and support services.
www.livingdying.org

Pope John Center
Adheres to the teachings of the Catholic Church; provides information on ethics in health care.
www.pjcenter.org/pjc

Books

Byock, Ira, M.D. DYING WELL: THE PROSPECT FOR GROWTH AT THE END OF LIFE. New York: Riverhead, 1997.

Callanan, Maggie, and Patricia Kelley. FINAL GIFTS: UNDERSTANDING THE SPECIAL AWARENESS, NEEDS, AND COMMUNICATIONS OF THE DYING. New York: Bantam, 1997.

Caplan, Arthur. MORAL MATTERS: ETHICAL ISSUES IN MEDICINE AND THE LIFE SCIENCES. New York: Wiley, 1995.

Dubler, Nancy Neveloff, and David Nimmons. ETHICS ON CALL: TAKING CHARGE OF LIFE-AND-DEATH CHOICES IN TODAY'S HEALTH CARE SYSTEM. New York: Vintage, 1993.

Edison, Ted (Editor). THE AIDS CAREGIVER'S HANDBOOK. New York: St. Martin's 1993. (orig. pub. 1988)

Furman, Joan, and David McNabb. THE DYING TIME: PRACTICAL WISDOM FOR THE DYING AND THEIR CAREGIVERS. New York: Bell Tower, 1997.

Grollman, Earl A. (Editor). BEREAVED CHILDREN AND TEENS : A SUPPORT GUIDE FOR PARENTS AND PROFESSIONALS. Boston: Beacon Press, 1995.

------CONCERNING DEATH: A PRACTICAL GUIDE FOR THE LIVING. Boston: Beacon Press, 1974.

------TALKING ABOUT DEATH: A DIALOGUE BETWEEN PARENT AND CHILD. Boston: Beacon Press, 1991.

Grollman, Earl A., and Kenneth S. Kosik. WHEN SOMEONE YOU LOVE HAS ALZHEIMER'S: THE CAREGIVER'S JOURNEY. Boston: Beacon Press, 1996. Thorndike, Me.: G.K. Hall, 1997.

Hendin, Herbert. SEDUCED BY DEATH: DOCTORS, PATIENTS, AND THE DUTCH CURE. New York: Norton, 1996.

Humphry, Derek. FINAL EXIT: THE PRACTICALITIES OF SELF-DELIVERANCE AND ASSISTED SUICIDE FOR THE DYING. Eugene, Ore.: Hemlock Society, 1991.

Keiser, Bert. DANCING WITH MISTER D: NOTES ON LIFE AND DEATH. New York: Doubleday, 1997.

Kubler-Ross, Elisabeth. ON DEATH AND DYING. New York: Collier, 1993. (orig. pub. 1969)

Lamm, Maurice. JEWISH WAY IN DEATH AND MOURNING. Flushing, N.Y.: Jonathan David Publications, 1972.

Larue, Gerald A. PLAYING GOD: DECIDING YOUR LIFE AND DEATH. Wakefield, R.I.: Moyer Bell, 1996.

Leary, Timothy, with David Prince. DESIGN FOR DYING. San Francisco: Harper, 1997.

Levine, Stephen. A YEAR TO LIVE: HOW TO LIVE THIS YEAR AS IF IT WERE YOUR LAST. New York: Bell Tower, 1997.

Lynn, Joanne, M.D. (Editor). BY NO EXTRAORDINARY MEANS: THE CHOICE TO FOREGO LIFE-SUSTAINING FOOD AND WATER. Volume 517 (Medical Ethics Series). Bloomington, Ind.: Indiana University Press, 1989.

Marker, Rita. DEADLY COMPASSION. New York: William Morrow, 1993.

Nuland, Sherwin B. HOW WE DIE: REFLECTIONS ON LIFE'S FINAL CHAPTER. New York: Vintage, 1995.

Quill,Timothy E., M.D. DEATH AND DIGNITY: MAKING CHOICES AND TAKING CHARGE. New York: Norton, 1994.

------A MIDWIFE THROUGH THE PROCESS: STORIES OF HEALING AND HARD CHOICES AT THE END OF LIFE. Baltimore, Md.: Johns Hopkins University Press, 1996.

Quindlen, Anna. ONE TRUE THING. New York: Dell, 1995.

Ray, M. Catherine. I'M HERE TO HELP: A GUIDE FOR CAREGIVERS, HOSPICE WORKERS, AND VOLUNTEERS. New York: Bantam, 1997.

Rinpoche, Sogyal. THE TIBETAN BOOK OF LIVING AND DYING. San Francisco: Harper, 1993.

Rollin, Betty. LAST WISH. New York: Random House, 1996.

Rosenblum, Daniel. A TIME TO HEAR, A TIME TO HELP: LISTENING TO PEOPLE WITH CANCER. New York: Free Press, 1993.

Smith, Douglas C. LAST RIGHTS: A PRACTICAL GUIDE TO RESPECTING THE RIGHTS AND DIGNITY OF THE SICK AND DYING. Indianapolis, Ind.: Macmillan USA, 1997.

Spiro, Howard M., Mary G. McCrea Curnen, and Lee Palmer Wandel (Editors). FACING DEATH: WHERE CULTURE, RELIGION, AND MEDICINE MEET. New Haven, Conn.: Yale University Press, 1996.

Wilcock, Penelope. SPIRITUAL CARE OF THE DYING AND BEREAVED. Ridgefield, Conn.: Morehouse, 1997.

Woodman, Sue. LAST RIGHTS: THE RIGHT TO DIE IN AMERICA. Beverly Hills, Calif: Dove, 1997.

Articles

Angell, Marcia, M.D. "The Supreme Court and Physician-Assisted Suicide: The Ultimate Right." THE NEW ENGLAND JOURNAL OF MEDICINE. January 2, 1997.

Belkin, Lisa. "The Relief Team." MIRABELLA. July/August 1996.

Berman, Laura. "Six Months to Live." REDBOOK. April, 1996.

Carter, Stephen L. "Why the Courts are Dead Wrong." THE NEW YORK TIMES MAGAZINE. July 21, 1996.

Fein, Esther B. "Failing to Discuss Dying Adds to Pain of Patient and Family." THE NEW YORK TIMES. March 5, 1997.

------"Gift for a Dying Daughter: Orders to Spare Her Pain." THE NEW YORK TIMES. March 6, 1997.

Foley, Kathleen, M.D. "Competent Care for the Dying Instead of Physician-Assisted Suicide." THE NEW ENGLAND JOURNAL OF MEDICINE. January 2, 1997.

France, David. "This Doctor Wants to Help You Die." NEW YORK MAGAZINE. January 13, 1997.

Gordon, Suzanne. "Doctors Are Remiss at the Deathbed." THE LOS ANGELES TIMES. October 10, 1996.

Kolata, Gina. "Living Wills Aside, Dying Cling to Hope." THE NEW YORK TIMES. January 15, 1997.

Lynn, Joanne, M.D. "Caring at the End of Our Lives." THE NEW ENGLAND JOURNAL OF MEDICINE. July 18, 1996.

Nuland, Sherwin B. "How We Die is Our Business." THE NEW YORK TIMES. January 13, 1997.

O'Malley, William J. "Making Sense of Suffering and Death." AMERICA. April 13, 1996.

Rosenthal, Elisabeth. "When a Healer is Asked, 'Help Me Die.' " THE NEW YORK TIMES. March 13, 1997.

Various Contributors. "The Age Boom: A Special Issue." THE NEW YORK TIMES MAGAZINE. March 9, 1996.

Various Contributors. "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)." JAMA: THE JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION. November 22/29, 1995.

Various Contributors. "Dying Well in the Hospital: The Lessons of SUPPORT." THE HASTINGS CENTER REPORT: SPECIAL SUPPLEMENT. November/December 1995.

Wilkes, Paul. "A New Pro-Life Movement in the Making." THE NEW YORK TIMES MAGAZINE. July 21, 1996.

Woodward, Kenneth L., and John McCormick. "For the Journey Everyone Must Face, Cardinal Joseph Bernardin Illuminated the Trail." NEWSWEEK. November 25, 1996.