(Editor’s Note: For a pdf version of the PRWeb release, go here.)
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.
Good for you, Diane Coleman! Blow the Whistle! . Obviously, this misinformation has a purpose — which, for the Hospice Organizations and Palliative Care Hospitalists, is to use the misinformation to encourage prospective Hospice (the elderly/disabled) patients not to prolong their lives by any artificial means and to Fast unto Death with the help of Hospice who promises death without pain when patients give up their right to EXPENSIVE curative care under regular Medicare.
I, at 86, am not opposed to fasting onto death with the help of hospice IF and When my treating physician gives me an honest terminal prognosis that reveals to me that prolonging my life will prolong my suffering from my terminal disease —-but, of course, if I am on Hospice OR NOT on Hospice and can have a few more months WITHOUT PAIN before the terminal cancer/disease gets me, is this my right under current law to have a feeding tube and this extra time on earth? I can’t be forced onto Hospice, can I. But!–hasn’t some state already tried to pass a law that indicated that late stage cancer patients, AFTER curative care has failed (as per the treating physician,) will not quality for feeding tubes and the nutritional special liquid under the state law?
As I have stated in my previous posts, the elderly and the disabled are in great danger because they appear to be the logical targets of Medicare and the private insurers for reducing the high costs of dying in expensive ICU and CCU in our public hospitals. Now there is a war between Big Insurance and Big Medicine, the Hospitals, in which both the patients and the physicians are losing their autonomy under existing laws. There is growing under the radar public policy to shorten life to save money and protect profits and the elderly/disabled are targeted. ALL advanced directives, of course, are biased toward shortening life, aren’t they? and the POA is the only safe procedure for patients .to protect their autonomy under current law.
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The hastening of death through the shortening of life to relieve suffering as is legal under the 1991 PSDA is supposed to be a voluntary choice of the individual patient who is educated to the pros and cons of treatment or no treatment by the treating physician. Instead! we have unilateral covert and overt (default) status that is extrapolated into the charts of elderly/disabled patients without their knowledge and consent to limit life saving and life extending treatments that the hospitals/physicians KNOW will not NOW be reimbursed by Medicare and the private insurers. . .
Feeding tubes are mandatory for those who are being treated for cancer of the head or neck in all stages of the cancer being treated because, of course, dysphagia, swallowing, breathing problems are worsened by the radiation that patients are led to believe will cure the cancer. Feeding tubes for those with chronic disabilities are like reading glasses and, of course, millions of people are kept alive with these tubes and live productive lives.
Blow that whistle! ,
Dr. Coleman: Thank you for this post. Having worked in various capacities on advance care planning education, counseling, and legislation, I agree that many advance directives do paint a limited and ‘loss-focused’ picture of what constitutes “quality of life”, particularly as it relates to non-terminal or pre-terminal conditions. My recent work with Dr. William Peace has alerted me to some issues that I had previously overlooked in my practice.
(Ludlum) “…choice is only possible when people receive full, accurate, and unbiased information.” Disability advocates hope that the letter will serve as a first step in a process to resolve the their concerns.”
To these two points, are there any current advance directives that in your opinion provide a fuller and less biased presentation of end-of-life choices? These would be very helpful resources to review and potentially promote as alternatives to the patients and institutions that I work with. Please feel free to contact me offline.
Thanks and happy holidays,
Ronn Huff
Great job Diane and Stephen! Keep up your superb leadership. Thank you.
Duane
As I near my 25th year as a disabled woman, I suppose that ableist bigotry should no longer surprise me. The ableism shown in these two documents is, however, breathtaking, and seems to be intended to literally take our breath! I’ve used a bipap for more than 10 years and it’s improved my life tremendously. My husband uses a Vpap (between a bipap and a vent) at night and oxygen during the day. I hope we have many more years of using them.
Keep up the good fight!
I am the person who found these “fact sheets” as I was researching POLST. The one on feeding tubes is mentioned in an article in Ethics & Medics, “POLST and Catholic Health Care”: http://www.cathmed.org/assets/files/Franklin,%20Brugger,%20POLST,%20E&M,%20Jan.%202012.pdf and in the Catholic Medical Association’s White Paper on POLST: http://cathmed.org/assets/files/LNQ59%20FINAL.pdf Christian Brugger is the lead author of both. I want to give credit where it is due, even as we might wish to separate out the broader shared criticisms of POLST and Gundersen Health’s “Respecting Choices” from the Catholic theology contained in the aforementioned article and white paper. As Jason Manne has commented, Brugger et al. have made perfectly legitimate criticisms of POLST (and more specifically, biased information about life-sustaining interventions) to which secular bioethics needs to listen to and take seriously: http://polst-views.blogspot.com/2013/08/the-catholic-medical-associations-white.html
I referenced this “fact sheet” when I testified for Second Thoughts Connecticut in opposition to Connecticut’s MOLST pilot, HB 6521: http://www.cga.ct.gov/2013/PHdata/Tmy/2013HB-06521-R000315-Mendelsohn,%20Stephen-TMY.PDF
Over the summer, I found the BiPAP “fact sheet,” sent it to Diane, and that is when she developed the idea of this sign-on letter. I have found nearly identical “fact sheets” from Honoring Choices Minnesota ( http://www.fvfiles.com/541245en.pdf and http://www.fvfiles.com/541247en.pdf ) and North Texas Respecting Choices ( http://c.ymcdn.com/sites/www.northtexasrespectingchoices.com/resource/resmgr/files/ntrc_tube_feeding_fact_sheet.pdf and http://c.ymcdn.com/sites/www.northtexasrespectingchoices.com/resource/resmgr/files/ntrc_breathing_fact_sheet.pdf ). The Gundersen Respecting Choices “fact sheets” are used in POLST programs and other advanced care planning systems across the nation. Respecting Choices is also used in Canada, Australia, Singapore, and a couple of European countries.
Respecting choices? Or manipulating choices?
All of us owe a major debt of gratitude to Stephen Mendelsohn, whose exceptional research efforts found the two “fact sheets” that are the subject of the letter. I had never seen or heard of them until he brought them to my attention. We also owe big thanks to Cathy Ludlum, another leader with Second Thoughts Connecticut, for her skilled contributions in editing the letter to Gundersen Health Systems. Stephen and Cathy have been tremendous partners in initiating the sign on letter to push back against the bias against life-sustaining care that permeates advance care planning.
Second Thoughts Connecticut (https://www.facebook.com/SecondThoughtsConnecticut) is also a role model in researching and addressing the problems with POLST/MOLST (Physician/Medical Orders on Life Sustaining Treatment). The Pew Trusts Stateline rightly gave the disability community credit for defeating the MOLST bill in CT (see http://www.pewstates.org/projects/stateline/headlines/new-end-of-life-measure-quietly-sweeps-the-nation-85899484943), which put the breaks on its advance in CT unless and until the problems can be addressed.