Led by Not Dead Yet, eleven national and twenty-three state and local disability organizations, as well as individuals, have sent an open letter to Respecting Choices, a prominent advance care planning program operated by Gundersen Health Systems in LaCrosse, Wisconsin. The letter criticizes two “Fact Sheets” distributed nationally by the program because they discourage people from choosing to use feeding tubes, “BiPAP” breathing devices and ventilators, despite the fact that the alternative is usually death.
The documents, entitled “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know”, have been posted with permission on the website of an Ohio hospice. They are sold on the Respecting Choices website for use in advance care planning.
The Gundersen documents express a strong bias against long-term use of feeding tubes, BiPAPs and ventilators, 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 letter was signed by twenty-five individuals who have successfully used one or more of these devices for years, and in some cases for decades.
“By their own explicit terms, these advance care planning documents are not only for people who are close to death no matter what they do, but also for people who could live a long time if they choose to use these health care devices,” said Diane Coleman, president and CEO of Not Dead Yet who has used a BiPAP breathing device at night for twelve years.
Cathy Ludlum of Manchester, Connecticut, who uses both a feeding tube and BiPAP, was involved in drafting the letter. “Feeding tubes and breathing devices are portrayed in these so-called fact sheets as uncomfortable and ineffective, especially for those of us with long-term, progressive conditions,” said Ludlum, a leader of Second Thoughts Connecticut. “But I have lived many healthy and happy years with the help of a feeding tube and a BiPAP.” Both Coleman and Ludlum have neuromuscular disabilities.
“Not every technology works for everyone, and people should certainly make their own choices,” Ludlum added. “But choice is only possible when people receive full, accurate, and unbiased information.”
The disability advocates hope that the letter will serve as a first step in a process to resolve the their concerns. They call on the Respecting Choices program to take four steps to address the disability community concerns:
— 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.
National organizations that signed on to the letter include the American Association of People With Disabilities, Association of Programs for Rural Independent Living, Autistic Self Advocacy Network, Disability Rights Center, Disability Rights Education and Defense Fund, Little People of America, National Council on Independent Living, Not Dead Yet, National Disability Rights Network, The Arc of the United States and United Spinal.
[Comment: As an ICU nurse for many years, I have seen the effects of such biased information. N Valko RN]