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Goal:
To organize a local Public Forum to improve end-of-life care in your community.
Suggested Timing: October or November
Title:
Finding Our Way: Living with Dying in _______________(Cleveland, Tucson, Atlanta, etc.)
It's time to confront the issues of pain, loss of dignity, and a sense of helplessness near the end-of-life. Let’s discuss needs and plan resources in order to help our citizens.
Invite:
For the panel, invite a prominent community physician, palliative and hospice care community leaders, a social worker, a member of the clergy (non-denominational, or a different faith for each meeting), and your Congressman or another local legislator. For the audience, invite local legislators, representatives from the Area Office on Aging and/or Human Services, elder law attorneys, business leaders, other community leaders, hospice representatives, physicians, social workers, local foundations, reporters from newspapers, radio and TV shows and the public.
Discussion Facilitators:
First, find a good facilitator! Next, look for experience. A well-respected and well-spoken physician with palliative care experience or community leader in hospice palliative care is a good choice. The same is true for other panel members. Often, a local radio or TV show host can capably facilitate discussion.
Set up:
Panel members should be seated in the front of the room and rows of chairs available for the audience; provide a lectern for moderator with microphone; several microphones at the head table; standing microphones in each of the aisles; print-outs of Finding Our Way articles that have run so far; print multiple copies of the Palliative Care article and place copies on each chair or hand out to each attendee. Place an easel-backed Finding Our Way poster next to the lectern. These will be available after August 15, by e-mailing your request to
findingourway123@aol.com
Suggested format:
Discussion should be tailored to the needs and questions of your community. The following is a general guideline only. Be sure to address issues that require local action.
Facilitator Talking Points:
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When facing advanced illness, far too many of us encounter unrelenting pain; too many of us suffer the indignity of restraints in hospital or nursing home beds; we have unanswered questions about what is happening to our bodies; we don’t know to whom to talk,
and we hardly know the questions to ask.
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Introduce palliative care practitioners, social worker and clergy (each should be prepared to give a brief -no more than 5 minutes- talk to help stimulate questions from the audience).
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We are here to help begin the conversation
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Without talking, without planning, we will not have a peaceful death; we will not have a “good ending” to our lives
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What specific action steps can we take in our community to improve end-of-life care
Open the floor to questions. Please tell us your story and let’s talk about it. You might encourage the audience to ask the panelists about:
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When is the right time to start talking about end-of-life issues?
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What local and statewide legislative agendas can be developed?
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What is palliative care and where can I get it here?
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How can I be sure my concerns about pain management are addressed?
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How I can get the doctor to answer my questions such as…?
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What should/can I tell young children about dying?
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How can we handle suicide, car accidents that result in death, other violent death in our community?
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How can I bring up the subject with my family?
If the discussion is slow to begin, one of the facilitators can open with the story of a real life circumstance,
preferably one he or she knows personally, and use it as an example that raises questions and topics for discussion.
Possible Action Steps Include:
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Ask your local hospitals about their pain management practices - are they committed to helping their dying patients be pain-free?
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Make a list of the hospitals in your area that offer palliative care services. What does each include? How can they be improved?
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Find out who is -or could be- organizing training programs for family caregivers. How would such a program be funded? Promoted?
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Create “support” groups to help people learn to discuss the issues with their families.
Related media activities:
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Write a news release on the public meeting(s) for your local newspapers and broadcasters
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Write a Public Service Announcement with the time and place of the public meeting(s) for your local radio stations.
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Contact your local TV and radio shows about interviews with the moderator and other facilitators, either announcing the public meeting or summarizing what happened afterward.
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