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HISTORY
Currently it is estimated that 80 percent of Americans will die in institutions and 50 percent of these will be incapable of making their own decisions.
In 2004, a small group of local healthcare leaders perceived that only 10-20% of patients entering Chicago hospitals had an advance directive of any kind. As healthcare providers, they understood the implications of not having a clear indication of patient wishes. Not only was the unfolding Schiavo case highlighting a worst case scenario, but these physicians had seen the burden on many families and providers when forced to guess what kind of care a patient might want.
In their experience, they found most people not prepared for a healthcare crisis. They noted that patients and families are often confused over medical terminology and associated outcomes and processes. To complicate matters, clinicians rarely have adequate time to discuss advance directives when patients are healthy and are sometimes uncomfortable talking to patients about end-of-life issues.
Timing also presents problems. Information on advance directives is often presented for the first time upon entering a healthcare facility. When advance directives are completed under these stressful circumstances, they are frequently not effective in influencing treatment decisions. They disappear, are unknown to physicians, cannot be produced by patients, are not available upon transfer, or are too vague or poorly understood to be useful. In light of advancing science, it is also extremely difficult to predict the exact scenarios ahead of time in a document. And, healthcare agents often have not had conversations specific enough to predict what their loved one would want. Finally, when healthcare professionals are uncertain about what decisions to make, the default is to treat, often resulting in unwanted procedures.
Faced with the knowledge that the situation would not improve unless action was taken, the small group formed a planning committee to explore an advance care planning program for Chicago. They enlisted representatives from the major health centers and other local leaders in end-of-life and palliative care. The planning committee met in 2005 and proposed a project that would be supported by a broad-based coalition of key organizations. To launch the project, they recommended holding a coalition-building seminar in October 2006 with nationally recognized experts on advance care planning. Horizon Hospice and Palliative Care offered to take the lead in developing the project.
The Retirement Research Foundation provided a six-month planning grant to Horizon to enable the planning committee to take the first steps to launch an advance care planning program in Chicago. A program director was hired in June 2006. Under the planning grant, the CRACPC was formed. A very successful October 13 seminar/workshop brought together over 100 local leaders at Northwestern Memorial Hospital to discuss barriers and recommend strategies for an advance care planning program. Following the October 13 event, an Advisory Council was formed to oversee the work of five task forces (see Program Structure).
Today the STT continues to make progress toward its goal of establishing an advance care planning program for Chicago. In this coming year, it will continue to expand the coalition, develop a small number of pilot projects with the help of its task force and seek additional funding.
at 312-636-9261 or someonetotrust@iomc.org.