The Community Alliance for Compassionate Care at the End of Life began as an all volunteer organization in May 1997. It was an organization that saw the need for informing and educating the community that there is a way for those at end of life to have a voice and experience a better quality death.

Over the years it was discovered that in order to fulfill the mission of the Community Alliance, that it was necessary to have a paid staff. Many programs and services had been developed and would need a full time staff to assist members and volunteers with these.

As time has gone on with communication advances, economic change and healthcare developments, the Community Alliance has also transformed in many ways. At one time the Community Alliance was able to find funding to support a five plus staff, today it is not the case. The Community Alliance is now down to one major funding source with a few other minor sources through donations and endowments. The Community Alliance is still strong in its membership and community advocacy; but due to our nation’s shifts over the years, Community Alliance can only support a staff of a full time Executive Director and a 32 hour a week Administrative Assistant.

Our community is now more than ever in need for the Community Alliance and its services. The current board of directors, members and staff see a growing urgency for the availability of information and education on the end life; it ultimately affects almost every aspect of our lives and community. Community Alliance is strong in its idealism and ready to continue to support its mission. The only thing in the way is lack of funding. 

A. Mission and Case Statement

The Community Alliance for Compassionate Care at the End of Life is a not-for-profit organization dedicated to enhancing community awareness of end of life issues and promoting quality care for individuals at life’s end. Our members are an alliance of healthcare professionals, educators and members of religious, business and civic communities throughout the Ozarks region. Together, we strive to improve the quality of life for dying persons and to support healthy bereavement experiences for families and friends.

We believe that people at the end of life have the right to receive the same quality of compassion, communication, care, dignity and respect they would expect at any other phase of their lives — from their healthcare professionals, from their families and friends, and from their community.

B. Services Provided 

Advance Directives – Missouri Attorney General, Jay Nixon, has adopted our advance directive document into the State of Missouri document. Included is a worksheet, healthcare proxy and a power of attorney that does not require legal expense to complete. The Advance Directive continues to be a strong service for the Community Alliance. Major revisions have been made this year and an Advance Directive Project has been implemented.

Your Voice...Your Choice- This program is a service provided through a Speakers Bureau of the Community Alliance. Speakers are trained to provide the community with information, education and answer questions concerning end of life wishes, advance directives and hospice.

EDNA – End of Life Education for Nurse Assistants. This program was also developed for education on a better quality end of life. Although the training continues to receive the highest reviews, its weekend full day concept is no longer a wanted educational medium for healthcare professionals. The Community Alliance is looking in to taking EDNA as an online course and as a seated core-curriculum course. The idea of outright sale of EDNA is also being looked into.

Multicultural Education/Diversity Outreach – A dedicated committee has presented programs to the public about death and dying in different cultures found in Missouri. We intend to continue the diversity outreach with programs such as the alternate lifestyles community and others. With the revisions to the Advance Directive, Community Alliance is working on getting it translated into Spanish and looking to “breathe new life” into this program.

Plus Much, Much More- Member’s Meetings, Speakers, Special Events, Healthcare Community Awareness, End of Life Education, Fundraising, Special Events and One-on-one Assistance.

C. Target Population:

1.) The Dying. The Community Alliance, from its inception, has focused on the “silent under-served;” that is, persons who are dying and their families. These persons are under-served by the mainstream health care establishment – which is focused on curative and rescue care; has neither mindset nor skills to actively engage persons who are dying (and families) and shepherd them through this final phase of living. These persons are under-served by their neighbors. People don’t “live” in their neighborhoods anymore, they sleep there. Neighborhoods are abandoned by most able-bodied persons during the day—the very persons capable of assisting people/families dealing with dying. These persons are under-served by their former employers and co-workers. As people get very ill, they drop out of the workplace. Employers, even those who might wish to help, lack the knowledge of how to be truly supportive and how to assist co-workers in lending support. These persons are under-served by their “church” family, bridge club—all of the “communities” like the workplace, where most persons today spend their time with other persons. The common thread in all of these situations isn’t so much lack of material resources/funding as lack of knowledge and skills to deal with dying persons and their families. Lacking too, are connections from health care environment to workplace to neighborhood to church, etc. The Community Alliance has addressed all of these knowledge/skill deficits through education and program training for each of these constituencies. Perhaps then, given that everyone on the planet will eventually die, dying people are the largest under-served group in our world today—and they are often the “silent under-served” because they are no longer able to advocate for their own wishes. Add to this equation an enormous group of aging baby boomers, who place a huge priority on being in charge of their own lives and you can perhaps hear the ticking of a time bomb of emotional distress.

2.) Healthcare Provider. The front line health care providers are many times paid minimum wage without benefits or the time and financial resources to attend training. They often have fewer benefits than the patients they serve. Increasing their access to educational opportunities will lead to feelings of inclusion and worth within the health care system, lower turnover among these front line workers and will contribute to better care provided to patients through continuity of caregivers, employee morale and feelings of autonomy, ownership and worth as a valued part of the healthcare team.

3.) The Aging. According to the 2000 Census, the US population aged 65 and over is expected to double in size within the next 25 years. By 2030, almost 1 out of every 5 Americans – some 72 million people – will be 65 or older. The age group 85 and older is now the fastest growing segment of the US population. Many are disabled and suffer from chronic conditions. 14 million people aged 65 and older reported some level of disability, most linked to a high prevalence of chronic conditions such as heart disease and will likely need long-term care.

4.) The Abandoned. With today’s mobile society, divorce, etc, persons are left at the doorstep of long term care facilities which are already understaffed. Add to that Medicare and Medicaid cuts affecting the quality of care delivered to the aged, persons are even more abandoned. Abandoned by the medical community when, after curative measures are no longer viable, the attitude of “nothing more can be done” is adopted. Many individuals live their last months in pain and without symptom control. Families are at a loss not knowing how to help their loved one.

5.) General Public. Everyone.