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MISCELLANEOUS
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Other
Publications,
Communications Programs & Model Projects,
Guidelines/ Measurement Tools,
Professional Education,
How To Locate Experts,
Program Discussion Guide
OTHER PUBLICATIONS
"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
www.abcd-caring.com
"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
www.publicagenda.org
"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
www.critical-conditions.org
"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
shd@quiknet.com
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
www.ohsu.edu/ethics/guideres.htm
"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
firm-hou@neosoft.com
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
ON OUR OWN TERMS: MOYERS ON DYING 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. (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.
COMMUNICATIONS PROGRAMS & MODEL PROJECTS
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
bioethic@midbio.org
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
bioethic@midbio.org
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
VEN@bishca.state.vt.us
Stories about the Vermont initiative are available at www.lastacts.org
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
ahf@msn.com
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
www.medicaring.org
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
GUIDELINES/ MEASUREMENT TOOLS
American Pain Society's "Quality Improvement Guidelines for the Treatment
of Acute Pain and Cancer Pain"
Contact: (847) 375-4715
info@ampainsoc.org
www.ampainsoc.org/pub
"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.
Contact: www.nho.org/porhtml.htm
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.
jjfins@mail.med.cornell.edu
"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
www.chausa.org/pubs/newsstnd.asp
Hastings Center Guidelines on the Termination of Life-Sustaining
Treatment
Briarcliff Manor, NY: The Hastings Center, 1987
Contact: (914) 424-4040
www.thehastingscenter.org
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
E-mail: cicd@rand.org
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
www.careofdying.org
Missoula Demonstration Project
Community Survey
A tool to study community members' knowledge, attitudes and experience
regarding the end of life.
Contact: (406) 728-1613
www.missoulademonstration.org/research.htm
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
www.missoulademonstration.org/research.htm
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
www.missoulademonstration.org/research.htm
Missoula Demonstration Project
Medical Chart Data Abstraction Tool
A tool to study the quality of end-of-life clinical care.
Contact: (406) 728-1613
www.missoulademonstration.org/research.htm
Missoula Demonstration Project
Network and Systems Analysis
A tool to study community-wide end-of-life resources.
Contact: (406) 728-1613
http://www.missoulademonstration.org/research.htm
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
www.fsmb.org/pain.htm
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
Joan_Teno@brown.edu
www.chcr.brown.edu/pcoc/toolkit.htm
"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
PROFESSIONAL EDUCATION
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
www.ama-assn.org/ethic/epec
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
www.mcw.edu/pallmed
Peaceful Death: Recommended Competencies and Curricular Guidelines
for End-of-Life Nursing Care
American Association of Colleges of Nursing
Contact: www.aacn.nche.edu/education/deathfin.htm
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
www.aahpm.org
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
diane.jones@mail.va.gov
www.va.gov/oaa/flp
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
kheller@edc.org
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
E-mail: cicd@rand.org
www.ihi.org
HOW TO LOCATE EXPERTS
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
www.ama-assn.org/ethic/epec
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
gooddeath1@aol.com
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
www.soros.org/death
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
PROGRAM DISCUSSION GUIDE
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
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