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Independent Living News & Policy from the National Council on Independent Living

NCIL Supports National Disability Letter on Living with Feeding Tubes and Breathing Support

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NCIL has signed on to a letter to Dr. Bernard Hammes, Director of Medical Humanities and Respecting Choices at Gundersen Health System urging them to Stop marketing and distributing advance care planning documents entitled “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know.”

The misleading and biased information contained in these documents is nothing less than life threatening and must be remedied immediately. The following steps are a minimum initial effort needed to address this situation:

  • Stop marketing and distributing “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know.”
  • Send a formal notice to all known purchasers and users of these documents directing that they no longer be used due to their misleading nature and offering to refund any related payments received for their purchase.
  • Issue a press release and post an announcement on the Respecting Choices website about the “recall” of these products due to their misleading, biased and harmful content.
  • Convene a Task Force to consider other corrective action steps that must be taken to remedy the harm done by these documents.  This Task Force should be composed of a majority of individuals who use these technologies, as well as suppliers and professionals with significant knowledge and experience with their long-term use.

Both of these documents purport to objectively assist individuals to make an informed choice about whether to use a feeding tube, ventilator or BiPAP. 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.

To sign on to the Truth Action letter, please email dcoleman@notdeadyet.org. Please provide the name as it should appear, as well as city and state. For organizations, please indicate whether the organization is national, state or local. For individuals, please indicate if you use a feeding tube, BiPAP or ventilator.

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