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One of the major initiatives of the Coalition is to bring advance care
planning activities into communities throughout the state. Though many think of
this as "consumer education," we refer to it as Public Engagement
— providing ways for the public to take an active role in assuring high
quality end-of-life care for themselves, their loved ones and their community.
Towards this end, the Coalition has three major goals:
1. Promote group discussions on end-of-life issues through innovative
materials and interactive group discussions in multiple
settings — such as faith communities, senior centers, adult day care programs,
classrooms, civic groups, health promotion workshops, self-help or support
groups, and dozens of other places where local residents meet.
2. Help develop and support community coalitions, encouraging individuals and
organizations to join forces to foster community-specific activities that
promote advance care planning and good end-of-life care. See examples of existing California coalitions.
3. Bring advance care messages to diverse communities around the state
through linguistically and culturally-appropriate educational materials,
outreach plans for targeted populations, and support of groups and organizations
with similar goals.
Speakers/Facilitators
Faith communities, senior groups, and healthcare and community organizations
throughout California are looking for ways to help their members think about and
prepare for end-of-life medical decisions. Two approaches can be
particularly helpful:
- Host small group discussions. One such program is the California
Coalition's "Talking It Over" series. Led by a lay facilitator,
small groups of 10-15 people are guided through three one-hour sessions:
"Exploring Your Personal Views," Talking With Loved Ones" and
"Making Tough Decisions." These sessions include exercises that help
participants reflect on their views and experiences with death and dying, and
become more comfortable talking with their loved ones, their doctor and/or
their clergy on this topic.
To orient facilitators to the Talking It Over series, during 2000-01 the
California Coalition conducted 13 trainings for more than 350 participants from Chico to
San Diego. For information on trained discussion leaders in your area, contact the
community coalition closest to you. More than 20 communities
have active coalitions — individuals and organizations interested in
promoting discussion about end-of-life issues with the public. (Click
here for list of community-based coalitions).
- Hold an informational forum. Many people need more information about
available services and related topics. Some ideas for session topics include:
- Learning about hospice services
- Palliative care — what we should expect from our healthcare providers
- Advance directives — what these forms are and how to fill them out
- Learning about organ donation
- Funeral planning — home funerals, burial, cremation
Any of these topics can be offered — and most communities have experts
available who know the subject. The best source is often your local
hospice program. (Call toll-free:
1-888-252-1010 for a list of hospice programs in your area.) You can also
check with the patient education department of your hospital, local colleges
that have courses on Death and Dying, and the medical society in your area.
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Conversation Guide for Talking with Loved Ones
The California Coalition encourages individuals and families to talk about
their wishes for medical care if they become seriously ill. While the
Conversation Guide was developed to help an adult talk with his/her mother about
her wishes for future medical care, it can be used to talk with any loved
one. The guide gives suggestions on how to raise the issue, responses to
concerns your loved one might express and questions to ask.
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Community Education Kit
Under the leadership of the Public Engagement workgroup, Community Education Kit was developed and is
now available for use in a variety of ways by both lay persons and
professionals. Also available in Spanish, the Kit includes three educational
tools:
- The Decisions Series — A six-part series of one-page articles
about making decisions at the end of life. Ideal as church bulletin or
newsletter inserts.
- Finding Your Way: A Guide for Medical Decisions Near the End of Life
— A 13-page booklet to
help individuals and
their families plan before serious illness occurs, as well as face
end-of-life decisions. Provided as a handout in adult classes,
libraries and brochure racks, this booklet is also used by
healthcare professionals when counseling patients.
- Talking It Over: A Guide for Group Discussions on End-of-Life Decisions
— Designed for lay discussion leaders, the
guide
provides the format and exercises for three one-hour sessions:
"Exploring Your Personal Views," "Talking with Loved
Ones," and "Making Tough Decisions." The exercises
used in Talking It Over are also available in Spanish and Tagalog. (One exercise — the Personal
Reflection Survey — is available in Chinese and
Vietnamese.)
The Community Education Kit is
available for $20 to any organization in California; groups outside California may purchase the Kit
for $35 (includes shipping/handling).
Click on these links to preview the Decisions series or
Finding Your Way
booklet online, at the
Sacramento
Healthcare Decisions website. Print
order form
and mail in or
order online. For additional information, call Sacramento Healthcare Decisions at (916) 851-2828.
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Caregiver Posters
The
Coalition has available four different posters targeting caregivers that
promote messages about early conversations, advance directives, pain management
and palliative care. Available in English and Spanish, the 11 x 17 colorful
posters are being distributed for use in community and healthcare settings by
local end-of-life coalitions and the Latino Outreach Task Force, which helped
develop the Spanish version. (The posters were produced jointly by the California
Coalition for Compassionate Care and the Community-State Partnerships
Initiative.) Click here to preview
the posters and download the order form, or contact Sacramento Healthcare
Decisions at 916-851-2828; glasmire@sacdecisions.org.
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Outreach to Diverse
Communities
The California Coalition for Compassionate Care brings advance care
planning messages to diverse ethnic and cultural communities through
linguistically and culturally-appropriate educational materials, outreach plans
for targeted populations, and support of organizations/groups with similar
goals. Through these activities, individuals and families from diverse
communities are becoming involved in reflection and discussion about their
end-of-life wishes and concerns.
Hispanic/Latino outreach —
statewide
- QueensCare Health & Faith Partnership — With the help of grant
funds, during 2000-02 the California Coalition partnered with this
successful parish nursing program in Hollywood and metro-Los Angeles.
Through the work of a part-time Hispanic health promoter, more than 5,000
Hispanics/Latinos in Los Angeles received helpful information about advance
care planning through presentations and discussion groups in faith
communities, senior centers, ESL classes, community organizations and home
settings.
- Statewide Hispanic/Latino Outreach Task Force — representatives from Los
Angeles, Pasadena, San Fernando Valley, San Jose, San Francisco, Santa
Barbara and Santa Rosa have been sharing opportunities for
collaboration, e.g., materials, trainings and media. Since fall 2000, the
task force has:
-
Helped develop the Spanish version of a series of advance care planning and
palliative care posters
targeting caregivers. These colorful posters are being used in community settings (faith communities,
libraries, and senior centers), as well as by healthcare organizations in
clinics.
-
Assisted the Coalition in conducting two trainings for 21
bilingual discussion leaders. (Projects in San Jose and San Francisco are
interested in pursuing similar trainings in northern California once their
outreach programs are further developed.)
-
Participated in several media events: online interview with
Latino.com, panelists on two Radio Bilingue "Linea Abierta"
call-in talk shows, and KBBS Spanish-language radio station in Santa Rosa.
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Chinese outreach — San
Francisco Bay Area
The Coalition participated on a 2001 committee of the American Cancer Society,
Northern California Chinese Unit that developed a quality of life handbook for
Chinese cancer patients and their families. The bilingual handbook includes
information from the Coalition's educational materials and is available from ACS at 510-797-0600.
Coalition partner Sandy Chen Stokes was involved in several 2001 activities
to bring information about end-of-life issues to Chinese Americans through the
media:
- Recruited World Journal (Chinese Daily News) to publish the 15-week Finding
Our Way newspaper series in its national weekly Sunday magazine
(circulation 350,000); with an introduction about the California Coalition.
- Provided editorial oversight for Chinese translation of Finding Our Way
(including recruiting volunteer translators).
- Worked with World Journal staff in Silicon Valley and San Francisco to
develop 15 local articles published in their Bay Area edition that featured
caregivers, patients and healthcare professionals from the Chinese
community.
- Worked with San Francisco Bay Area Chinese television and radio stations
to cover end-of-life issues, including hospice, advance directives, pain
management and the California Coalition.
Mrs. Lee's Story
In August 2004, Mrs. Lee's Story: Medical
Decisions Near the End of Life was developed as the result of a recent study
conducted by the California Coalition for Compassionate Care. The study revealed
that many Chinese families facing difficult medical decisions at the end of life
believe that their choices are limited to only two options: aggressive
life-sustaining measures or "giving up." Participants cited the lack of
information available in Chinese on end-of-life care as a major reason for their
confusion.
The 16-page booklet written in Chinese and English relates the story of
91-year old Mrs. Ming Lee to introduce health issues that concern Chinese elders
and their families. It includes basic information on:
- advance directives
- advance care planning
- pain management
- hospice care
Coalition partner Sacramento Healthcare Decisions developed this new resource
with guidance from an advisory committee of Chinese community leaders and health
professionals. The Chinese section of the booklet can be read by people who
speak Cantonese or Mandarin.
Chinese American Coalition for Compassionate Care (CACCC)
CACCC is dedicated to promoting advance care planning care and improving end-of-life care among Chinese Americans. To find out more or join CACCC,
go to their website at
www.caccc-usa.org or contact
Judy Citko at (916) 552-7573 or Sandy Chen Stokes.
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Filipino outreach — San
Francisco Bay Area
Members of St. Andrew Church, an active Filipino faith community near San
Francisco, helped translate Talking It Over discussion tools into Tagalog, hosted and participated in a Helping People Prepare training. St. Andrews distributed the Decisions bulletins to their 500
members and held a series of Talking It Over discussions. Future plans
include conducting additional discussion groups for Filipinos at St. Andrews and
in settings throughout the Bay Area.
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Lessons Learned
For groups wanting to bring advance care planning messages to an unfamiliar
cultural/ethnic group, the following suggestions may be helpful:
- Find the believers — Identify organizations or individuals from the
targeted group who have an interest in and/or passion for improving
end-of-life care (e.g., a health professional, clergyperson or other
spiritual leader, or a lay person who has cared for a dying family member).
- Know your audience — Explain the materials, programs available to promote
advance care planning. Find out which ones would be best for the group. (For
example, if they hold regular discussion groups, or like to talk about
topics in a group setting, Talking It Over is a good tool. If they
prefer to receive information in writing or aren't ready for a discussion,
the Decisions series is a particularly useful introduction to the
topic. Or a nurse or social worker could have a class on advance directives.
Finding Your Way can be a good discussion-starter for an individual
with his/her family member or doctor.)
- Enlist help of cultural experts — The best person to deliver the message
(e.g., presenter, discussion group leader) is most often from the same
culture as the group you are targeting.
- Make use of the media — Talk with members of the ethnic/cultural group
about the type of media most likely to reach this population (e.g.,
newspaper, radio, TV) and who has contacts with or is willing to approach
them. Identifying people willing to share their personal stories can be a
powerful tool when approaching the media, who often use personal experiences
to capture the attention of their audience. Don't overlook the simpler
approach of displaying posters with advance care planning messages (i.e.,
series of "caregiver ads" developed by Midwest Bioethics Center)
or announcements of upcoming activities (e.g., discussion groups,
presentations) in community settings (churches, community or senior centers,
libraries, etc.).
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This web page was last updated on
3/21/07.
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