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| Project:Professional Forum, February 2004 |
| Introduction and kick-off to the Rallying Points Coalition sponsored by the Robert Wood Johnson Foundation. Community providers gathered to network and discuss possibilities for a shared mission to improve end of life care in the community. |
| Project:Community Forum, July 2004 |
| This community forum featured a panel of community speakers on end of life and grief support. 125 community members attended to share ideas on what the needs are in the community and ideas to improve services. |
| Project:Open Space Forum, August 2004 |
| Using Open Space facilitation, community members gathered to talk about possible projects to improve end of life care. Projects included creation of a residential hospice, educational programs on end of life, support services for lesbian and gay community members and others. |
| Project:Website Construction |
| The coaltion created a website as an educational and networking tool. |
| Project:Community Visioning Forum October 10, 2005 |
On October 8, 2005 Santa Fe Doorways hosted a dialogue on how we as a community can work collaboratively to support people of all ages who are dying and grieving.
The dialogue was facilitated by Dee Leahman, Director of Community Partnerships for End of Life care for the Hospice and Palliative Care Center, Winston-Salem, North Carolina.
Below are the notes from that Forum:
The first exercise at the October 8 forum was to imagine and dream together. Using the first statement below as a reflection tool, participants were asked:
In terms of how our community cares for its dying and grieving members, what is your vision or dream for Santa Fe? (Responses below)
Imagine our community as a place where we acknowledge dying and grieving as natural dimensions of living well until we die… a place where we collaborate toward more open access to end of life care…a community that expects and receives a gold standard of pain management. Imagine Santa Fe…a community that models sensitivity to people’s wishes and upholds personal dignity at life’s final chapter for everyone, wherever they call home… where we collectively value planning ahead to ensure final wishes are honored and upheld…a place where families and loved ones have easy access to grief and bereavement support, where physicians, clergy, nurses, therapists, administrators, friends, teachers, patients and families embrace a practice and literacy of support and care for each person … no gaps, no barriers, no exceptions…
“To be a community modeling for our society an end of life support network which embraces interfaiths, no faith and all culture and races…”
“Hospice residential facility; Adoption of a law very similar to Oregon’s Death with Dignity Law; Requirements for physicians to follow specifics of one’s Advance Care Directives or Health Agent.”
“Residential Hospice; Quality, pain-free care; Recognition of death process, Openness to allow pain, grief, support and spirit to travel. Always available support for caregivers, families, community, individuals…”
“The vision? That we relax into our lives, acknowledging that life’s every breath is precious of each of us and that when the time comes to breath the last breath we leave with the fullness of life.”
“That everyone in the community knows about the resources available for the dying, has easy access to those people, services, and assets, knows how to use them, uses them, and supports them. That our local media in partnership with Santa Fe Doorways helps to communicate this vision.”
“That no one needs die alone; that no one need die in a nursing home, nor a hospital – environments that are cold and sterile. The dying need an environment of golden light that lead on through the doorway to the world beyond one’s earthly existence, surrounded by those who care from the heart. The return to the ground of being should be a birthing into the unknown as gently, as pain free, as lovingly as possible.”
“Access and availability to care, filled with compassion and knowledge.”
“A community that honors death”
“Public ritual, outreach at end of life, neighborhood organization, education in elementary schools, churches…”
“When someone is in the dying process, that person (family and friends) would know the resources to call upon for help or support. The resources would be widely known and available to all.”
“Complete, aesthetic, profound, authentic Presence in living and dying.”
“That each person have the support and “team” available to be surrounded by loving, caring, knowledgeable people to help them pass peacefully, calmly, fearlessly…”
“My imagine is a place where the various groups who work with grieving and dying can relate and welcome families…concerns around death and dying. The agencies would staff the place together and provide hospice care there…”
“I have a dream of a beautiful healing sanctuary – a large compound with different buildings that would serve the whole community and evolve with community. People facing life-threatening or debilitating conditions could stay there, come and go, and that loved ones and caregivers could also receive nurturing and support and stay if needed…”
“More information readily available for people with end of life needs. People who are passionate about end of life grouping together to offer and support life care needs. Knowledge and caring for anything who needs dying and grieving care…”
“The ideal is to remain at home with support from family, hospice and others to be free of pain and to have available support for ending life if it is too painful…”
“There is an abundance of people to care for others who are grieving and dying…there is never a question or problem of money and every one feels perfectly cared for and cared for in their own special way…”
“A safe, clean and caring place for anyone or all to let go into the process of dying. To die consciously in a loving, supportive community.”
“Coming together to support its dying and grieving people through respectful, authentic care. Truly connecting families with all of the folks in our community who can support with sensitivity…”
“A sanctuary of transitions, staffed 24/7…silence/meditation room, energy/healing rooms, screaming room, art room, music room, grief room…”
“A place where all people understand and accept death as a natural part of – an extension of life. Where children are not fearful of death but are supported and nurtured through their losses…”
“Connections: no one to be alone. A system, organization is in place which is sensitive as well as able to meet the needs of the dying – and those close to dying. Death becomes simply a part of the process of living…”
“Collaborate to the point that we can draw on the most appropriate person or service for each dying person in need and each family – without competition. When we give it away we will gain it back…”
“My vision is that end of life care would be available to everyone. How this will occur:
The entire community knows about Doorways, how to contact Doorways and its members, the community collaborates rather than competes, ongoing training for caregivers, ongoing training for all employees of nursing homes and hospices, and cross-cultural training…”
“Thanotax – all traditional funerals (embalming, over $3ooo caskets) be taxed to provide care and counseling for the process of dying – for those dying and those around the dying person…”
“It is my experience that wonderful support for dying and grieving is currently available in Santa Fe for people who have money. I would like to see it become more available for those without resources. I hope that more people will come to accept death as natural and positive, and be able to transition from an attitude of “fighting to the death” to one of preparing for transition. Awe replaces fear…”
“That every person be allowed to have a meaningful, magical death without pain and suffering. That loved ones are allowed to grieve and are supported…”
“My image would be less focus on money and competition among community organizations, home care agencies, hospices…we need more unity, more education and true genuineness. Death and dying is not a race…”
“A lovely home-like setting…”
“Food is a human right! Envision Kitchen Angels providing appropriate nutritional support for the dying as well as primary caregivers…”
In the Second Exercise, groups were asked to consider all or some of the following questions:
1. Respond to the vision statement exercise
2. How can we get there together?
3. Who is not here who needs to be? Who can we invite around the table?
4. What new doors should we walk through?
5. What are some possible next steps?
6. How can we maintain momentum?
Group Notes
Decrease Competition & know resources for referrals to support each other.
Find out where there are gaps in care.
Continuity of comfort care for person and family
Up-front decisions (nothing last minute)
Individualized needs met
Appropriate nutrition and contact with identity and beauty
Hope in the human spirit
Building community to get to know the person
Build connection and find doorways
Address lack of attention for professional caregivers who perform the daily work.
Sensitivity to healing ourselves through cultural ritual
Building bridges to provide services
Group notes
To continue momentum: everyone gets names and organizations as a contact list
Current events on the website, also updates – use it as community website!
Post monthly meetings
Gear conversational meeting, promote transformation and change
Make a point of inviting specific puzzle pieces, having meetings at various organizations.
Group Notes
Support the dying process with bodywork
Recognize rights of individuals and support those wishes
Educate; begin the conversation, speak & write
Look for opportunities and strengthen them
Stay conscious and open to unexpected situations
Who’s note here? Catholic priests, docs, legal folks, children, terminal patients
How to get them to the table: Identify what’s in it for them…
What new doors do we need to walk through?
Flyers in Funeral homes about Doorways
D&D column in the newspaper (ElDorado Sun, Reporter, New Mexican)
Sign-up Sheets with phone #’s
Group Notes
Who is not here? The cops, medical examiners
Our culture doesn’t support youth with advance care directives, maybe a form to sign with driver’s license.
Put death into rituals of our own.
What kinds of connective generating activities would bring people out? Life skills class, pay at mall, radio education, Spanish, Native American classes, program at hospital, mortuaries.
Group Notes
Increasing awareness is essential.
Take the Doorways symbol and immerse the community in it.
Look at other community models (Missoula, MT)
How do we neutralize the words “end of life” and make it less shocking so the community will pay attention?
Develop fund raisers that are fun and appealing…
Tell the Doorways story.
Awareness+ Engagement+Action+Paradigm Shift
Group Notes
A healing place to support friends and family of dying
Compassionate environment
Education about the importance of having the conversations
Encourage people to take responsibility for having their wishes be known.
Bumper Sticker: Are your wishes known?
Teaching about importance of having the conversation in different work environments: hospitals, nursing homes, etc.
Goal is not to keep everyone alive, but to help in death process.
Who is not here? Doctors and hospital people. More Hispanics, tribal people, etc.
Talk to our associates about Doorways.
Birthing rooms-deathing rooms—this will come around.
Support those interested.
Increase knowledge and access
Include nature and way of talking about death and educating about death.
Column in paper: Death is not optional
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| Project:Website Re-construction (On-going 2005) |
| The Santa Fe Doorways website was redesigned in March 2005. This is a continuous improvement project. |
| Project:Spring Planning Retreat, May 2005 |
| From September 2004-January 2005 Santa Fe Doorways went through major and necessary change. As the RWJ grant ended, the Coalition began the hard work of determining how members would work together toward a shared vision and build upon the work completed in the first year. This retreat allowed members old and new time to reflect on the primary goal to provide educational programs and services to the community and to set goals for the future. |
| Project:Community Forum to Identify Task Forces, October 14, 2005 |
The following “Task Forces” were prioritized at the most recent working meeting of Doorways on October 14, 2005. This was a follow-up meeting to the visioning workshop led by Dee Leahman on October 10.
Barbara Spring, PhD, led this discussion about her ten-year experience in community building in Missoula Montana. She then invited the Doorways members who were present to break into small groups and identify what they thought were our specific project wishes for the Santa Fe community. The following “task forces” and specific task force projects were identified:
1. Education Task Force (A task force to focus on Life Cycle and death education for children and teachers; educating faith communities and clergy about what end of life and grief-support community resources exist, educate providers and families about pain issues, educate the community regarding dementia issues and raise awareness, educate the community about the process of dying, address cultural diversity issues through educational projects, take on an Advance Care Directive initiative, Write a newspaper column (Death is Not an Option), Multi-lingual Speaker’s Bureau and Website expansion.
2. Caregiver Support Task Force (A task force that would focus on: Care for the caregiver programs, Respite for caregivers, and support groups for professionals)
3. Community Events Task Force (A task force that would create community celebrations such as Day of the Dead and Memorial Day events)
4. Bricks and Mortar Task Force (A task force to create “Death Central” clearinghouse, a support center and free-standing Hospice House for people who are dying and grieving)
5. Fund Raising and Sustainability Task Force. (A task force to address: How does Doorways grow without becoming another hierarchical organization? Who will carry on with the behind-the scenes coordination? Who will write grants? Do we need paid staff? Who will write and send out minutes and arrange for meetings? Who will serve as a steering committee?
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