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Program Discussion Guide


"The Agitator's Guide: Twelve Steps to Get Your Community to Talk about Dying"
Americans for Better Care of the Dying (ABCD)
Contact: (202) 530-9864

"At Death's Door: What Are the Choices?"
This book addresses the question: How should society care for people who are suffering or near death. By providing three distinct policy choices it stimulates discussion and offers actions to take.
$5.50 plus shipping and handling
Contact:Public Agenda at 212-686-6610

"Colorado Resource Guide for End-of-Life Care"
The Colorado Collaboration on End-of-Life Care
Contact: Judy Hutchison
(303) 315-2558

"CRITICAL Conditions Planning Guide"
Georgia Health Decisions Information and worksheets to help consumers discuss and make final healthcare decisions.
Contact: (800) 544-5751

"Finding Your Way: A Guide for End-of-Life Medical Decisions"
This 13-page booklet by Sacramento Healthcare Decisions is an outstanding yet compact introduction to making medical decisions that patients or family members may face at the end of life. Contact them for a price list and order form.
Contact: Sacramento Healthcare Decisions
4747 Engle Road Carmichael, CA 95608.
(916) 484-2485
(916) 484-2486 fax
Individual copies can be purchased, but it is sold primarily in bulk (from $.25 to $.40 each, plus shipping and handling).

"The Final Months of Life: A Guide to Oregon Resources"
A directory and comprehensive guide to care in Oregon by county. Subject categories can be adapted to the community level.
Contact: Task Force to Improve the Care of Terminally Ill Oregonians

"Five Wishes"
Simplified advance directive form that is valid in 35 states. Five Wishes addresses not only the patient's physical needs, but also his/her medical, personal, emotional and spiritual needs as well. Available in English and Spanish.
Contact: (850) 681-2010
Aging with Dignity

"Deciding About Life's End"
The Foundation for Interfaith Ministry has created a manual for members of religious congregations that addresses a range of end-of-life issues. The manual has been used successfully at three Presbyterian churches in Houston, TX.
Contact: Ronald Sunderland
Service Center of the General Board of Global Ministries
7820 Reading Road
Caller No. 1800
Cincinnati, OH 45222-1800
(713) 661-5758
(513) 761-3722 fax
Please include $4.95 plus $2 for shipping and handling. Refer to document #2123.

"A Guide for Recalling and Telling Your Life Story"
A workbook to help older people record cherished and priceless memories, values, and the traditions of their heritage which can be used as a focus of personal exploration and reflection. The idea is to "give your family the gift of your memories." Cost: $12 plus $3 for shipping and handling.
Contact: Hospice Foundation of America
2001 S Street NW #300
Washington, DC 20009
(800) 854-3402

"Living and Healing During Life-Threatening Illness"
A report that presents messages from more than 400 people who participated in a focus group designed to help healthcare providers better understand their experiences. People with life-threatening illnesses, family caregivers, bereaved family, community representatives and professional caregivers participated in the project.
Contact: Catholic Health Association of the United States
(314) 253-3458

A rich digest of essays and articles on end-of-life care. Included are questions for discussion, ways to take action, and practical guides to caring for loved ones. (1.4 Mb. Adobe Acrobat 4 required.)

"POLST Program (Physician Orders for Life-Sustaining Treatment)"
Transferable orders to limit life-sustaining treatment form successfully used in Oregon.
Contact: Center for Ethics in Health Care, Oregon Health Sciences University
(503) 494-4466

"State Initiatives in End-of-Life Care (series)"
A series of policy briefs profiling promising new practices and policies in end-of-life care. Produced by Community-State Partnerships to Improve End-of-Life Care, a national program of The Robert Wood Johnson Foundation, in cooperation with the Last Acts Campaign and with direction provided by the Midwest Bioethics Center.
Contact: Midwest Bioethics Center
(816) 221-1100

"Taking Charge of Your Health Care"
This brochure by the Society for Healthcare Consumer Advocacy of the American Hospital Association serves as an excellent tool for consumers who are unaware of all their healthcare choices.
To order call toll free: (800) 242-2626 or fax: (312) 422-4505.
Mail orders to: AHA Services, Inc.
P.O. Box 92683
Chicago, IL 60675-2683
Cost: Single booklet $5/member; $8/nonmember.


Advance Directives Community Project of the Midwest Bioethics Center
Educates people about their rights regarding healthcare decision-making. The project has developed an advance directive to assist citizens in thinking about their options and documenting their wishes.
Contact: Midwest Bioethics Center
1021-1025 Jefferson Street
Kansas City, MO 64105
(816) 221-1100

Caregivers Night Out
A program by which members of a congregation volunteer to provide care for a disabled shut-in so that their regular caregivers can have a "night off."
Contact: First Presbyterian Church
144 Conduit Street
Annapolis, MD 21401
(410) 267-8705

Caring Conversations
Community-based intergenerational program designed to encourage friends and family to discuss end-of-life issues.
Contact: Midwest Bioethics Center
1021-1025 Jefferson Street
Kansas City, MO 64105
(816) 221-1100

Compassion Sabbath
An interfaith initiative to provide clergy and religious educators with the tools and resources to address the spiritual needs of dying people and their families and to improve end-of-life care in Greater Kansas City. A conference for clergy, training workshops for religious educators, prayer breakfasts and community education are all part of this pilot project for a national initiative.
Contact: Midwest Bioethics Center
1021-1025 Jefferson Street
Kansas City, MO 64105
(816) 221-1100

Journey's End -- A Self-Exploration
Vermont Voices on Care of the Dying -- Vermont Ethics Network
A Conference on Improving Care at the End of Life attracted more than 400 participants to a retreat center in Vermont in both 1997 and 1998. The conference was captured in a report called "Vermont Voices on Care of the Dying." The report is available for free.
Contact: The Vermont Ethics Network
89 Main Street, Drawer 20
(802) 828-2909
Stories about the Vermont initiative are available at

Grief at Work: A Guide for Employees and Managers
A one-day training workshop for Employee Assistance Programs, human resource managers and corporate leaders, conducted by the Foundation.
Contact: American Hospice Foundation
Naomi Naierman
President and CEO
(202) 223-0204

Partnership for Caring
Partnership for Caring is a non-profit coalition of consumers and health care professionals. Its goals are to increase consumers' expectations about care at the end-of-life and to help them attain that care. Among other programs, it helps people select health care agents and helps their agents make good decisions for them. Partnership also provides a wide variety of materials and programs about end-of-life issues for consumers and professionals.
Contact: Partnership for Caring
Karen Orloff Kaplan, MPH, ScD
President and CEO
1035 30th Street, NW
Washington, DC 20007
(202) 338-9790

RAND/IHI Initiative to Improve Quality at the End of Life
Support for providers and organizations that want to improve their services, including reform strategies, measurement approaches, and referral to an array of other helpful sites.

Respecting Your Choices: An Advance Care Planning Program
Successful community advance care planning campaign that has resulted in 85% of adults in the community having an advance directive prior to death.
Contact: Gundersen Lutheran Programs for Improving End-of-Life Care
(800) 362-9567, ext. 5279


American Pain Society's "Quality Improvement Guidelines for the Treatment of Acute Pain and Cancer Pain"
Contact: (847) 375-4715

"Baby Boomers Fear Talking to Parents About Death"
Survey in 1999 by the National Hospice Foundation shows Americans are more likely to talk to kids about drugs or sex than discuss terminal illness with parents. This survey can be adapted by local organizations, and used as a point of discussion.

Chart Abstraction Instrument
End-of-Life Decision-Making in the Hospital: Current Practice and Future Prospects
Developed by a group of researchers in the New York City area.
Contact: Joseph Fins, M.D.

"Danger Signs: Indications that Care of the Dying May Be Inadequate"
Alicia Super and Lawrence A. Plutko, 1996 Health Progress, 77 (2); 50-54.
The "Danger Sign" checklist is part of the manuscript entitled "Danger Signs: Coalition Points to Causes and Consequences of Inadequate Care of the Dying."
Contact: Marilyn Hart
Health Progress/Catholic Health Association
(314) 253-3450

Hastings Center Guidelines on the Termination of Life-Sustaining Treatment
Briarcliff Manor, NY: The Hastings Center, 1987
Contact: (914) 424-4040

Instruments to Assess Pain and Other Symptoms
A list of instruments for assessing pain.
Contact: RAND Center to Improve Care of the Dying
(703) 413-1100

Measurement Tools for End-of-Life Care (to be published September 1999)
Supportive Care of the Dying: A Coalition for Compassionate Care
Questionnaires to obtain feedback from patients, families, bereaved families and professionals about effectiveness of care for those affected by and living with life threatening illnesses. Also available are tools to use within healthcare organizations to complete a self-assessment of the infrastructure and professional competencies needed to provide excellence in care for those affected by and living with a life-threatening illness.
Contact: Sylvia McSkimming
(503) 215-5053

Missoula Demonstration Project
Community Survey
A tool to study community members' knowledge, attitudes and experience regarding the end of life.
Contact: (406) 728-1613

Missoula Demonstration Project
Faith Community Leader Survey
A tool to study strengths and needs of faith community leaders in providing end-of-life spiritual care.
Contact: (406) 728-1613

Missoula Demonstration Project
Family After-Death Interview
A tool to study the continuum of the end-of-life experience including dying, death and bereavement as expressed by a family member or significant other (for sudden death and death following long-term decline or illness).
Contact: (406) 728-1613

Missoula Demonstration Project
Medical Chart Data Abstraction Tool
A tool to study the quality of end-of-life clinical care.
Contact: (406) 728-1613

Missoula Demonstration Project
Network and Systems Analysis
A tool to study community-wide end-of-life resources.
Contact: (406) 728-1613

Model Guidelines for the Use of Controlled Substances for the Treatment of Pain
Recommendation adopted as policy by the Federation of State Medical Boards of the US.
Contact: (817) 868-4000

Pathways to Improve End-of-Life Care: A Community Approach
Contact: M.C. Sullivan
(816) 221-1100

Precepts of Palliative Care (for professionals)
Documents lay out the fundamental principles behind the delivery of excellent palliative care at the end of life.
Contact: Last Acts
(312) 642-8111

"A Vision for Better Care at the End of Life: Five Principles of Palliative Care"
Documents, which are intended for use by consumers, lay out the fundamental principles behind the delivery of excellent palliative care at the end of life. Available in English and Spanish.
Contact: Last Acts
(312) 642-8111

Toolkit of Instruments to Measure End of Life
Brown University
A comprehensive annotated bibliography of instruments to measure the quality of care received at the end of life, including instruments that incorporate the voices of the dying person and their loved ones in measuring quality of care. Categories include: quality of life, advanced care planning, pain/depression/other symptom assessment, functional status, survival time and aggressiveness of care, continuity of care, spirituality, grief, caregiver and family experience, and patient/family satisfaction with quality of care.
Contact: Joan Teno, M.D.
(401) 863-1560

"Twenty Improvements in End of Life Care -- Changes Internists Could Do Next Week"
Presented by Donald Berwick, M.D., Institute for Health Care Improvement, at the American College of Physicians-American Society for Internal Medicine 1999 Annual Meeting. Prepared by Joanne Lynn, M.D., from the suggestions of a network of contributors to Americans for Better Care of the Dying.
Contact: (202) 530-9864

Veteran's Administration Pain Management Initiative
A systemwide approach to pain management initiated by the Department of Veterans Affairs, intended to reduce pain and suffering for veterans experiencing acute and chronic pain associated with a wide range of illnesses, including terminal illness. Key elements of the initiative include the use of "Pain as the Fifth Vital Sign" for early recognition and assessment, prompt and effective treatment, evaluation of outcomes and quality, education programs for clinician competence and expertise in pain management and research.
Contact: Jane H. Tollett, Ph.D
(202) 273-8540


EPEC Project -- Education for Physicians in End-of-Life Care
American Medical Association. Train-the-trainer model to educate practicing physicians in all aspects of end-of-life care.
Contact: (312) 464-5000

Medical College of Wisconsin Palliative Medicine Program
Program to improve care for the dying in America through the development, implementation and dissemination of innovative education and clinical care programs.
Contact: (414) 805-4605

Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care
American Association of Colleges of Nursing

The Primer of Palliative Care
A concise overview of hospice and palliative care published by the American Academy of Hospice and Palliative Medicine, a professional organization of physicians who are involved with care of the dying.
Contact: (800) 228-0810

Veteran's Administration Faculty Leaders Project for Improved Care at the End of Life
An initiative of the Office of Academic Affiliations, Department of Veterans Affairs (VA), to develop benchmark curricula for end-of-life and palliative care -- and strategies for their implementation -- for training resident physicians in general internal medicine and the subspecialties of internal medicine.
Contact: Diane H. Jones
Grant Administrator
(202) 273-8379

Consultants on Institutional Change to Improve Care at the End of Life Decisions Near the End of Life
An interdisciplinary, institution-based leadership and quality improvement initiative to promote humane and ethical end-of-life care in U.S. health care institutions.
Contact: Karen Heller
(617) 969-7101

Institute for Healthcare Improvement
Organization that works with institutions through a collaborative process to create rapid, breakthrough improvement in end-of-life care. Their work in end-of-life care is a joint endeavor with RAND/IHI Initiative to Improve Quality at the End of Life
Contact: (703) 413-1100, ext.5457


EPEC Speakers Bureau
Education for Physicians on End of Life The American Medical Association. A detailed listing of potential speakers compiled by EPEC to help organizers of educational programs for physicians.
Contact: (312) 464-5000

The Good Death Initiative, Inc.
A non-profit organization created by journalist Marilyn Webb to help communities improve end-of-life care. This initiative provides speakers, facilitators and written materials for town meetings across America on death and dying.
Contact: (212) 479-7721

PDIA Faculty Scholars
The Project on Death in America Faculty Scholars Program identifies outstanding clinical faculty who are making a commitment to improving end-of-life care, and provides support for disseminating existing models of care, developing new models for improving the care of the dying, and developing new approaches to the education of health professionals about the care of dying patients and their families.
Contact: (212) 548-0150

Promoting Excellence in End-of-Life Care
A Robert Wood Johnson Foundation National Program Office which supports the development of system improvements for care of the dying.
Contact: Julie Emnett
(406) 243-6668

ON OUR OWN TERMS Discussion Guide
-A rich digest of essays and articles on end-of-life care. Included are questions for discussion, ways to take action, and practical guides to caring for loved ones. ( Adobe Acrobat 4.0 required.) 1.4MB file.

Spanish Version: En Nuestros Propios Terminos: Moyers habla de la muerte