The project began following an open letter from disability advocates dated December 2013. According to the letter, previous versions of the documents expressed a strong bias against long-term use of feeding tubes, BiPAPs and ventilators, potentially discouraging health care consumers and medical professionals from using these life-sustaining devices except for short-term recovery and not as part of a viable disability lifestyle. The Not Dead Yet open letter was signed by over thirty disability organizations as well as twenty-five individuals who have successfully used one or more of these devices for years, and in some cases for decades.
In response to the letter, Respecting Choices began a dialogue with disability advocates, which led to a productive exchange and, ultimately, to substantially revised fact sheets on feeding tubes and breathing supports. These documents are intended to provide consumers, as well as legal and medical advisers, important information for health care decision-making and advance directives.
A formal joint announcement is below and can also be viewed online on the Respecting Choices website, and the revised fact sheets are online (feeding tubes, breathing supports) and available for purchase from Respecting Choices.