Not Dead Yet and other disability advocates and rehabilitation physicians have worked with Respecting Choices, a national leader in the field of advance care planning, to develop fact sheets on feeding tubes and breathing supports. Today, they announce the results of an over two year collaborative effort.
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 advisors, 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.
Dear Colleagues:
In December 2013, a number of disability organizations and individuals jointly expressed their concerns about two healthcare decision-aids created by the Respecting Choices® program. One of these decision aids focused on the use of medical nutritional support for those with serious illness and the other focused on breathing support for those with serious illness. The concerns expressed were that these decision aids were incomplete and biased or misleading, and could result in uninformed decisions and harm to people with disabilities, including loss of life.
Once these concerns were expressed, the leaders of Respecting Choices recommended that representatives from Respecting Choices and these disability advocates work together to consider improvements to these two decision aids. This work was complicated and required an over two-year effort to form a balanced committee and exchange information and perspectives, as well as considerable back and forth dialogue concerning language to ensure effective communication.
The result of this work and collaboration, however, has been the development of two revised decision aids that address the concerns of both the disability advocates involved and the person-centered standards of the Respecting Choices program. We hope that these revised and improved decision aids will help all patients make better informed decisions about when medical nutritional and breathing support will and will not be helpful depending on the individual’s medical condition and goals.
We also hope that this process of collaboration will serve as a model of cooperation between healthcare professionals and disability or other diverse groups when they have differences, especially in the field of healthcare decision-making and advance care planning.
We want to express our thanks and appreciation to all those who contributed to this effort including Linda Briggs, MS, MA, RN, Dr. Carol Gill, Ph.D., Dr. Kristi Kirschner, M.D., Cathy Ludlum, Stephen Mendelsohn, Sandra E. Schellinger, MSN NP-C, and Dr. Lisa Wolfe, M.D.
Sincerely,
| Diane Coleman | Bernard “Bud” Hammes |
| President Not Dead Yet |
Director Respecting Choices |