ABCD Exchange : November 1998 : Upfront - Illinois Coalition for Improving EOL Care

Illinois Coalition for Improving End-of-Life Care: Program Gains Statewide Support
by Beth Walston, PhD

Dr. "D" clearly understood his prognosis, and most of all, the importance of patient and family autonomy and choice at the end of life. After months of suffering through chemotherapy and various other treatments, he decided to let his life end. He began to withdraw nutrition and hydration. Within a few days, he was admitted to the hospital where he wished to die. After preparations were made, and good-byes said to his family, colleagues, and the community he so loved, Dr. "D" asked that his oxygen and IVs be turned off. He died, in his sleep, with peace and dignity.

His "good death" became the catalyst for a campaign in Illinois to empower lay people to make similar, informed choices about their dying; to educate and inform the public about the choices available to terminally ill patients and their families.

In February 1997, a rough draft outlining potential legislation was submitted to individual state senators; by May, Senate Resolution #76 was passed, creating a task force to investigate current and historical practices in end-of-life care in Illinois. That December, a group of health care professionals and citizens formed The Illinois Coalition for Improving End of Life Care to promote awareness among the public that although death is inevitable, the quality of life during the dying process can be greatly improved. Its board of directors includes physicians and nurses, as well as a state senator, a town mayor, and an attorney, and other concerned individuals.

So far, the group has made important strides. A solicitation for community involvement led to funding and generated widespread support. Grant applications have been submitted to major area industries and to community-development funding agencies.

The key elements to a successful grassroots approach to improving end-of-life care are:

• a true passion for the work,
• a tenacious attitude in believing it can be done, and
• a focus on community involvement through education and public awareness.

• Cultural change, so that death is viewed as a natural part of life, not a failure of the health care system. Educational and community awareness programs for health care providers and the general public will help achieve this goal.
• Free consultation to patients and families facing life-threatening illness.
• Information on patient choices in end-of-life issues.
• Information on the limits of living wills, which do not guarantee that wishes are granted, or that one’s last days are filled with compassion. Today, the coalition has grown dramatically, and has expanded to include interest groups from across the state, including representatives from Chicago and Springfield. By networking with other initiatives around the country, we have gained even more momentum, and are part of the national movement that is underway.

  The caring pediatrician from Nebraska never anticipated the far-reaching effects of his actions during the final days of his life, but those who were inspired by him continue to appreciate his legacy.

  Beth Walston, Ph.D., executive director of the Illinois Coalition for Improving End-of-Life Care, attended ABCD’s strategic meeting in July, where she offered ideas on grassroots organizing.

  For more information, contact Beth Walston at 200 West 3rd Street, Alton, IL 62002, phone: 618.259.6173 or fax: 618.259.7427.

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  This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.