Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A. Original Tools from this Issue's Contributors:

Children's Program:
A working document with activities for different age groups of children, ages 3-17 who participate in the UCSF Children's Hospital Bereavement Retreat. © 2001 UCSF Children's Hospital. Published here with permission.

Family Bereavement Retreat Breakout Session Topics by Location

Family Bereavement Retreat Program Schedule

B. Websites Related to this Issue's Contributors:

American Pain Foundation
http://www.painfoundation.org
This nonprofit information resource and patient advocacy organization aims to improve the quality of life of persons with pain and to raise public awareness and understanding of pain. The site includes a pain care bill of rights, pain action guide, legislative updates and patient information that can be searched by disease type, as well as other resources and links. The Foundation is based in Baltimore, Maryland.

Mount Ida College
http://www.mountida.edu
Find information about Mt. Ida’s National Center for Death Education by clicking on "Offices and Services" in left margin, and then scroll down to it. Dr. Carol Wogrin serves as executive director and Dr. Phyllis Silverman is on the advisory board. The National Center for Death Education offers workshops and a summer seminar on various dimensions of death and dying for health care professionals, see website for details.

Phyllis R. Silverman
http://www.phyllisrsilverman.com/
Dr. Silverman's personal website with information about her published work.

Project on Death in America
http://www.soros.org/death.html
Sponsored by the Soros Foundation, the mission of the Project on Death in America is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy.

Supportive Care of the Dying: A Coalition for Compassionate Care
http://www.careofdying.org/
The three priorities of the coalition are research, developing models of comprehensive, community-based, supportive care for dying people, and creating a professional development program. The site has a variety of tools and resources and back issues of Supportive Voice, the newsletter of the coalition.

C. Other Relevant Websites

The resources included in On Grief and Bereavement are primarily focused toward the grieving individual. Families and communities who are coping with grief and loss especially traumatic loss will find additional resources in the November-December 2001 issue of Innovations entitled Coping with Loss.

In this issue we have a Special Feature: Online Bereavement Support by Yvette Colón. This article includes includes an annotated list of grief and bereavement websites. Here are a few additional relevant sites.

Association for Death Education and Counseling
http://www.adec.org
A multi-disciplinary professional organization dedicated to promoting excellence in death education, bereavement counseling, and care of the dying, The Association for Death Education and Counseling envisions a world in which death, dying, grief, and bereavement are recognized as significant aspects of the human experience. Current information in the field of thanatology and counseling, as well as links to special interest topics on grief and bereavement.

Before Their Time
http://www.beforetheirtime.org/
Before Their Time is a collection of memorial songs that aims to provide comfort to people after the death of someone close, and help them heal. Besides offering musical comfort that may make grieving less painful and lonely, this album project is designed to raise money and visibility for two organizations that provide services to individuals and families going through end-of-life experiences. All net revenue from album sales will go to Hospice VNH, which provides both assistance for the terminally ill and bereavement support to survivors in Vermont and New Hampshire, and the New Hampshire Youth Suicide Prevention Association, a non-profit organization that has provided educational and intervention programs statewide since 1994.

Bereavement Magazine: A Journal of Hope and Healing
http://www.bereavementmag.com
Designed to be "a support group in print," Bereavement Magazine includes articles, stories and poetry. Readers have full access to archived issues at this website, as well as access to some material available only on the web.

Cancer Net
http://cancernet.nci.nih.gov/
Cancer Net’s mission is to provide recent and accurate cancer information from the National Cancer Institute (NCI), the Federal Government’s principal agency for cancer research, to the public. Features a PDQ on Grief, Loss and Bereavement for patients, and another for health professionals. Search on the terms "grief and bereavement".

Centering Corporation—Your Grief Resource Center
http://www.centering.org
This site aims to provide access to the best grief literature available on the Web. They also work to develop needed books and caring workshops on grief for adults and children.

The Centre for Grief Education
http://www.grief.org.au
An independent, nonprofit opened in 1996 and based in Melbourne, Australia, the Centre for Grief Education offers links to education programs, individual counseling, a journal called "Grief Matters," a bereavement support directory and grief support information.

Center to Improve Care for the Dying: Toolkit of Instruments to Measure End of Life Care
http://www.gwu.edu/~cicd/toolkit/toolkit.htm
Joan Teno, of the Center for Gerontology and Health Care Research at Brown University, and faculty and staff at the Center to Improve Care of the Dying, have assembled a comprehensive annotated bibliography of instruments to measure the quality of care at the end of life. Take special note of the Tools to Assess Grief: http://www.gwu.edu/~cicd/toolkit/grief.htm including the "After-Death Bereaved Family Member Interview," and the Grief and Bereavement Literature Review.

Compassion Books
http://www.compassionbooks.com
Compassion Books offers hundreds of excellent books, audiotapes, and videos on the topics of grief, death and dying. The resources have been collected from hundreds of publishers, both small and large, and have been carefully reviewed by knowledgeable professionals and others who have experience with grief, loss, and death.

The Compassionate Friends
http://www.compassionatefriends.org/
The Compassionate Friends is a national nonprofit, self-help support organization that offers friendship and understanding to bereaved parents, grandparents and siblings. The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.

The Dougy Center: The National Center for Grieving Children and Families
http://www.dougy.org
This center based in Portland, Oregon offers support services to children, teens and adult caregivers grieving a death. The site has information about training, books, videos and training manuals for those interested in constructing grief programs in their own communities.

Dr. John Grohol’s Mental Health Page
http://www.grohol.com
A dedicated and web-savvy mental health professional, Dr. Grohol has created a site with numerous links to resources and online support groups. Visitors may search for information on grief and bereavement.

The International Work Group on Death, Dying and Bereavement
http://users.imag.net/~lon.death/iwg/html
Comprised of clinicians, researchers and educators dedicated to the development of knowledge, education, research and practice about death, dying and bereavement, this organization seeks to promote the work of its members and others in the field. Includes links to many documents detailing principles and assumptions in the field of Death, Dying and Bereavement from 1981 to 1997.

National Funeral Directors Association: NFDA Online
http://www.nfda.org/
Information for Funeral Directors as well as a search feature to find a funeral home or online obituary. Includes consumer protection guidelines and other consumer resources.

OncoLink
http://www.oncolink.upenn.edu/about_oncolink/
Full of links and information on cancer ranging from diagnosis, treatment, clinical trials and support, OncoLink contains many articles on death, grief and bereavement. Find information on bereavement counseling, as well as links to book reviews and additional resources about the grief process. See in particular: http://www.oncolink.upenn.edu/pdq/506750.html– an informational patient summary on loss, grief, and bereavement adapted from the summary written for health professionals by cancer experts.