Disability rights groups criticize advance care documents

photo of a doctor pointing to a sheet of paper.
Misleading advance care information

Nearly three dozen disability rights organizations, led by Not Dead Yet, sent a letter December 20 to a prominent advance care planning program, challenging the use of of two nationally distributed guidance documents that they argue inappropriately discourage people from using feeding tubes and breathing support devices.

The two one-page fact sheets, titled “Tube Feeding: What You Should Know” and “BiPAP and Ventilators: What You Should Know,” were released by Respecting Choices, a program run by the Wisconsin-based Gundersen Health Systems.

In the letter, the advocacy groups expressed concern that the documents were “in no way limited to people who are imminently dying,” and thus could discourage people who otherwise could live for years with the assistance of these devices.

“Both of these documents purport to objectively assist individuals to make an informed choice about whether to use a feeding tube, ventilator or BiPAP,” the letter states. “However, using frequently identical language, both documents reflect a strong bias against using these medical devices for any purpose other than short-term recovery.

“The documents describe long-term use of these devices as fraught with discomfort and unpleasant side effects, and actively discourage individuals from even trying them despite the certainty that they will die as a result.”

They call for Gundersen Health System to stop marketing and distributing the documents, as well as to send out formal notices and take other steps to prevent further reliance on the materials.

“The misleading and biased information contained in these documents is nothing less than life threatening and must be remedied immediately,” the letter states.

The letter was signed by 11 national disability rights organizations, including the National Disability Rights Network, the ARC and the American Association of People With Disabilities. It was also signed by 23 state and local organizations, and numerous individuals.

Disability Rights Washington, the publisher of Disability Rights Galaxy, is a member of the National Disability Rights Network.