The Worcester Response: Better Ending Initiative
The story of the Better Ending initiative begins with the 1996 committee of the Worcester District Medical Society (WDMS). Led by Dr. H. Brownell Wheeler of the University of Massachusetts Medical School (UMMS), the committee was working to improve the care of terminally ill patients. An "oration" by Dr. Wheeler at the 1997 annual meeting was published and widely distributed, which led to increased interest in advance care planning discussions. In 1998, UMMS helped to organize the statewide Massachusetts Compassionate Care Coalition.
Planning Committee Formed
By 2002, Dr. Wheeler had engaged the help of William P. Densmore, a retired corporate executive and respected civic leader to form a Planning Committee, and to develop a vision, specific goals, and implementation plans to improve the care of terminally ill patients. The Committee included leaders representing health care, faith groups, the legal profession, social service agencies and the community.
The Vision Stated
The new partnership’s vision was that All persons in Central Massachusetts live their last days in this life as comfortably as possible, in the setting of their choice, according to their expressed wishes, while they and their families are supported by a caring community.
Progress Is Steady
Since April 2002 Executive Director Christine McCluskey has presided over eight volunteer work groups who monitor and implement almost 30 projects using over 100 volunteers. These projects are aimed at the health care system, faith groups, attorneys, financial planners, social service agencies, employers, unions and professional associations, funeral directors, and diverse populations.
Over 65,000 copies of the signature 8-page brochure, A Guide for a Better Ending, have been distributed through the work groups, including versions for African American, Vietnamese, and Spanish readers. Community presentations, speakers, and a companion video have spread awareness of the importance of advance care planning. In September of 2004 the Partnership became a non-profit corporation. Since then, two videos, media exposure, a speaker’s bureau, community presentations, and a Web site have been developed to offer a comprehensive program for advance care planning. Radio interviews, public service announcements, TV appearances, newspaper and regional magazine articles round out the active role Better Ending has taken to educate its constituency.
Goals
(stated as conditions required to fully achieve the VISION)
- For patients in the healthcare system, their family and their designated health care agent:
- they are fully informed,
- their health care proxies and advance directives are accessed,
- their wishes and concerns are listened to and observed
- adequate pain management is provided,
- distressing symptoms are relieved.
- Patients with terminal illness are cared for at the location of their choice, to the extent possible, including their own home or a hospice, at the earliest appropriate stage in their illness.
- Patients’ and their families’ non-medical needs are identified and met. These needs may include psychological or spiritual support; help with legal issues; help with financial issues; and help with social or family issues.
- Faith groups, social service agencies dealing with the elderly, all segments of the health care system and segments of the legal system dealing with estate planning understand, accept and perform their essential roles.
- Community leaders and the general public understand and accept the compassionate care VISION, the conditions or goals which must be achieved, and the array of action steps required.
- A high proportion of the adult population has participated in advance care planning. They have had a facilitated discussion, with appropriate family members included, about end-of- life needs in general and health care issues in particular. They have executed health care proxy forms, together with a statement of personal wishes. Copies have been distributed to family members, their lawyer, their primary care physician and other health care providers as appropriate. Achievement of this goal will require the community understanding and support suggested by goals four and five.
Organization
The Board of Directors meets quarterly to provide guidance, monitoring and cross-communication. The Executive Director is responsible to the Board. Based on the improvement needs cited in the introduction and the goals cited above, an array of indicators has been selected to benchmark current measures and to judge progress as implementation proceeds. These include pain management, hospice utilization, location of death, patient/provider relations and awareness and use of advance care planning.
VNA Care Network is donating office facilities. The Partnership is affiliated with the Massachusetts Compassionate Care Coalition, a statewide umbrella organization for local end-of-life-care coalitions.
A Community Advisory Council, made up of forty-six community leaders who endorse the Partnership’s vision and program, meets semi-annually to receive information and provide advice and support. Constituent groups include health care, faith groups, social service agencies, legal, news media, labor unions, employers, foundations, financial planners, funeral directors, public education, higher education, ethnic populations and local, state and federal government.