Coalition for Dialogue on Death and Dying

FIRST YEAR REPORT

This seems like an appropriate time to catch you up with what has been going on with the Coalition for Dialogue on Death and Dying. As you recall, the Coalition was started under the auspice of the Hospice of Mid Coast Maine which received a $45,000 first-year, start-up grant from the national foundation, Project on Death in America (PDIA). The object of the Coalition was to study the culture of dying and bereavement in the Mid Coast region; to see how well the various providers meet the needs of the community, and discover what service gaps might exist. It has been a very exciting and productive year.

From a beginning group of 12, the Coalition Steering Committee has grown substantially to 32 very active members. Based on the need to be inclusive, a wide range of members have been recruited to the coalition. An Advisory Committee was formed to bring key area leadership into the Coalition. Additionally, over 100 persons have been involved in various committees and other activities of the Coalition.

An important goal of the Coalition is to facilitate dialogue, not only in the general community, but among the leadership and groups that can most make a change effort. This is a collaborative model for systematic change based upon joint/community problem-solving, overcoming resistance to change, and finding the means and resources to strengthen and change the system.

Several committees were formed to help organize the work of the Coalition. One major task of the Surveys Committee has been to document the first hand experiences of dying people in the Mid Coast area. This is accomplished by the sensitive interviewing of dying persons and their loved ones. Some important themes have emerged from these personal interviews:

• "didn't know what was out there..."
• "The Doctor should know..."
• "I don't know what I'd do without the support of my family / friends / church..."
• "Friends stopped coming around..."
• "Those who have faith have an easier time."
• "We couldn't talk about it."
• "The physical care was the easy part."
• "Not all doctors and nurses can deal with this."

It may surprise you to learn that we have identified more than 50 area organizations which are providing some service to dying and grieving people. The Survey committee has coordinated focus group interviews with professional and volunteers in these provider groups. The focus groups range in size from 6 to 18 persons, and represent a wide range of profession, age, gender, and experience. A rigorous analysis has begun to explore:

• what services are actually available in the area,
• what barriers exist to receiving/accessing those services,
• what are the real needs of families an individuals coping with dying and grief,

what interrelationships exist between agencies, including referral and ooperative agreement.

This is a major analysis of the "delivery system" for services to the dying and grieving that will tell us not only what is available but will also help to identify area-wide gaps in service delivery and access.

The strategy of the Community Dialogues Committee is to facilitate conversations on the issues of dying and grief. Its work is based on the premise that this area/community can truly address its concerns only when community members from all walks of life have real opportunities to hear each other and to work together democratically. Conversations or, "dialogues", have been organized in work place settings, service clubs, churches, community organizations and broad community meetings convened especially for this purpose. These conversations will help us to understand the nature of the local cultures with respect to dying and grief, and help us to assess the service delivery system from the viewpoint of "consumers" or "potential consumers".

To date, over 25 dialogues have been held and another 30 have been scheduled. We encourage people in the community to consider setting up dialogue groups. Trained facilitators are available to conduct the dialogues that usually last 1 - 1-1/2 hours.

On the basis of the Coalition's work thus far, a number of substantive issues have emerged:

• Identification of actual/perceived barriers to accessing services due to consumer knowledge, geography, income levels, and provider economics;
• There is a lack of an operable system of referral between care-givers and organizations and between caregivers;
• Care-givers and smaller organizations, as well as patients, feel isolated;
• Meaningful communication and dialogue between organizations is lacking;
• Uneven attitudes/expectations of providers regarding the value of interdisciplinary practice, and functions, roles and responsibilities of the dying person, family and community exist.

A third committee, the Symposium Committee, has several community programs in the works. The first is a special presentation by Hedda Sharapan, Associate producer of Mister Rogers Neighborhood. Her presentation, The T.L.C. of Communicating with Children about Death, took place on March 17 at the Mid Coast Presbyterian Church in Topsham. A second program is scheduled in coordination with the University of New England, the Maine Bioethics Network, and The Maine Hospice Council. Entitled, Pain and Symptom Management in the Elderly: Issues of Living and Dying, it is planned for April 2 at the Atrium. Other consciousness raising programs will be planned for later in the year and a Report to the Community presentation of the work of the coalition is in the planning stages.

In sum, the Coalition has emerged as a major force in the area-community. Over 100 individuals have been actively involved, reaching at least 1500 people through personal interviews, focus groups, community dialogues, speeches and the like. The organizational members have begun to explore means of inter-referral, sharing of information and potential collaborative programming. Community groups are requesting initial as well as follow-up dialogues. Community leadership, through the Advisory Committee, is openly receptive to and supportive of the Coalition's work. In short, community consciousness is being raised, issues are being examined. The data is persuasive, and systemic change has begun.

The coalition has much to accomplish in the second year. In addition to focus groups and community dialogues, organizational analyses of the 51 local organizations involved with providing service to families coping with dying and grief will be a major effort. We are also planning two major community-wide dialogues. These will be on a larger scale and involve a cross section of people who live and work in mid coast Maine.

We appreciate all the time and effort of all who have volunteered with the Coalition this year. We are happy to tell you that the Project on Death in America has provided funding for the second year of our project.

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