December 20, 2013
Bernard Hammes, Ph.D.
Director of Medical Humanities and Respecting Choices
Gundersen Health System
1900 South Avenue
La Crosse, WI 54601
Dear Dr. Hammes:
The purpose of this letter is to express the deep concerns of the undersigned individuals and organizations pertaining to the Gundersen Health Care System Respecting Choices advance care planning documents entitled “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know.”
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.
For a point-by-point analysis of the misinformation and extreme bias contained in these documents, please see Disability Community Concerns About So-Called “Fact Sheets” appended below.
Many of the undersigned individuals are among the tens of thousands of people with disabilities who use these medical technologies on a long-term basis and are therefore able to enjoy meaningful, productive and fulfilling lives.
Our greatest concern about the misinformation and extreme bias against treatment contained in these documents is that they are marketed and broadly used for advance care planning, and are in no way limited to people who are imminently dying regardless of the use of these devices. Children and adults who can live for years or decades with the help of these devices, as well as their families and health care providers who lack specialized knowledge in this area, are being actively misled and discouraged from life-saving options that many of the signatories to this letter use every day.
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.
Please respond to this letter no later than January 10, 2014 by contacting Diane Coleman of Not Dead Yet at dcoleman@notdeadyet.org.
Sincerely,
National Organizations
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
United Spinal
State and Local Organizations
Access Center for Independent Living, Dayton, OH
Access Living
ADAPT of Texas
ADAPT Montana
ADAPT NE
Center for Disability Rights, Rochester, NY
Communitas, Inc., Manchester, CT
Community Access Project, Somerville, MA
Connecticut Office of Protection and Advocacy for Persons with Disabilities
Independence Northwest, Naugatuck, CT
Independent Living Center of the North Shore and Cape Ann Inc, Salem, MA
Maryland Disability Law Center
Massachusetts People Organized for Wellness, Empowerment & Rights (MPOWER)
Michigan Disability Rights Coalition
Middle Georgia Center for Independent Living, Inc. (d.b.a. Disability Connections), Macon, GA
NYS Disabilities Advocacy Association and Network, NY
Regional Center for Independent Living, Rochester, NY
Second Thoughts Connecticut
Second Thoughts Massachusetts
The Arc Michigan
Topeka Independent Living Resource Center, KS
Vermont Center for Independent Living, Montpelier, VT
Vermont Coalition for Disability Rights, Montpelier, VT
Individuals Who Use Feeding Tubes, Ventilators and/or BiPAPs
Amanda Baggs, Burlington, VT
Mark Boatman, Missoula, MT
Paul Chambers, Marathon, OH
Charles Carr, Methuen, MA
Diane Coleman, JD, Rochester, NY
Nicholas Dupree, New York, NY
Michelle Duprey, East Haven, CT
Gregory Dupuis, South Windsor, CT
Carol J. Gill, Ph.D., Darien, IL
Alexander Harrilla, Erie, Pa
Carrie Ann Lucas, Windsor, CO
Cathy Ludlum, Manchester, CT
Maria A. Matzik, B.S., Fairborn, OH
Emily Munson, JD, MA, Indianapolis, IN
Andrew D. Pulrang, Plattsburgh, NY
Daniel Robert, New York, NY
Barbara Ruth, San Jose, CA
April Smith, Grand Rapids, MI
Maria Sotnikova, Atlanta, GA
Carol Sutton, Robbinsville, NC
Alana R. Theriault, Berkeley, CA
Jade H. Theriault, Berkeley, CA
Ingrid Tischer, Berkeley, CA
Michael Volkman, Albany, NY
Larry A. Voss, Darien, IL
Alice Wong, San Francisco, CA
Family Members and Other Individual Supporters
Michael E. Bailey, Mission Viejo, CA
Joseph A Bellissimo MD, Madison, Wi
Sara Buscher, Appleton, WI
Kathryn Cappella, Rush, NY
Carolyn Clark, Staten Island, NY
Alan Cochran, Fairborn, OH
Yoshiko Dart, Washington, DC
Charles Desmarais, Berkeley, CA
Kristin Dougherty, Tucson, AZ
Stephen Drake, Rochester, NY
Elizabeth Ellsworth, Omaha NE
Shelby L. Gubin, Frederick, MD
Dustin Hankinson, Missoula, MT
Linda S. Higgs, St. Albans, WV
Claude Holcomb, Hartford, CT
Mary Jo Jacque, Green Bay, WI
Ruth C. Kahn, Boston, MA (in loving memory of Paul Kahn)
Bob Kafka, Austin, TX
Denise Karuth, Northhampton, MA
Mary Kellett, Minneapolis, MN
John Kelly, Boston MA
Elaine Kolb, West Haven, CT
Stan Kosloski, Petaluma, CA
Karen Langley, Methuen, MA
Nadina LaSpina, New York, NY
Sarah Launderville, Williamstown, VT
Virginia Knowlton Marcus
, Baltimore, MD
Rita Marker,JD, Steubenville, OH
Ben Mattlin, Los Angeles, CA
Stephen Mendelsohn, New Britain, CT
Mary Margaret Moore, Salem, MA
Bill Peace, Syracuse, NY
Fred Pelka, Florence, MA
Ruthie Poole, Malden, MA
Karen Roseman, Fairfield, CT
Karen Schneiderman, Jamaica Plain, MA
Robert Scopatz, Inver Grove Heights, MN
Andrea Shettle, Washington, DC
Robin Stephens, Fort Collins, CO
Stephanie Thomas, Austin, TX
Renee Walbert, Denver, CO
Christine M. Zainer, M.D., Wauwatosa, WI
Alyssa Zisk, Sharon, MA
***
Disability Community Concerns About So-Called “Fact Sheets”
A closer examination of the so-called “Fact Sheets,” “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know,” should help to clarify the reasons for disability community objections to their explicit bias against people with disabilities who make long-term use of life-sustaining technologies.
The documents invite the person to make a choice about using a feeding tube or breathing support, but urge the decision to be made before the person actually needs it. The problem with this approach is that research shows that people change their minds as they progress through increasing levels of disability and find they can adapt successfully to their new circumstances. (See e.g. Fagerlin, A., and Schneider, C. E., “Enough: The Failure of the Living Will,” Hastings Center Report 34(2): 30-42, 2004; Groopman, J., Hartzband, P., “Advance directives are the beginning of care, not the end,” ACP Internist, July/August 2012, http://www.acpinternist.org/archives/2012/07/gray.htm; Fried TR, Byers AL, Gallo WT, et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006;166:890-895.)
| Tube Feeding: What You Should Know | Help With Breathing: What You Should Know |
| This fact sheet can help you decide if you want to try tube feeding. The time to make this choice is when you feel well and have the facts you need. Ask questions and talk with your doctor and others. Think about what being alive means to you. | This sheet describes and explains your choices. The time to make this choice is when you feel well and have the facts you need. Ask questions and talk with your doctor and others. Think about what being alive means to you. |
The documents express their bias against long-term use of feeding tubes and breathing devices as follows:
| Tube Feeding: What You Should Know | Help With Breathing: What You Should Know |
| Tube feeding works best if:• You are healthy.• You need tube feeding for a short time to recover from surgery or a sudden illness. Tube feeding does not work as well if:• Your body is becoming weak from chronic health problems.• You have an illness that can no longer be treated.• You are older and weak. | A ventilator or BiPAP will work best if:• Your lung problem can be fixed.• You are using either device for a short time to get better after surgery or a sudden illness.A Ventilator or BiPAP will not work as well if:• Your body is shutting down from long-lasting health problems.• You have an illness that can no longer be treated.• You are not able to stand the air pressure required to move oxygen in and out of your lungs. |
In order to present and compare the choices for and against using these technologies, both documents show the downsides of the choice “for” as follows:
| Tube Feeding: What You Should Know | Help With Breathing: What You Should Know |
| Before you decide, think about what should be done if tube feeding doesn’t work. What if your health gets worse? What if you cannot think or talk? Would you want to stop tube feeding if these things happen? Talk to your doctor and family about what you would want them to do. | If you think you want to try a ventilator or BiPAP, you need to figure out what you want to do if either device does not work. What if your health gets worse? What if you cannot think or talk? Would you want to stop the ventilator or BiPAP if these things happen? Talk to your doctor and family about what you would want them to do. |
In contrast to these gloomy “what ifs” in the documents, the decision not to use tube feeding or breathing devices leads to a focus on the positive:
| Tube Feeding: What You Should Know | Help With Breathing: What You Should Know |
| You may have fears about not getting food or water. You may think you will starve or be uncomfortable. This is not true. When food and water are not given, you will die naturally from your chronic illness. You will not feel hungry, and you will receive good care to make you comfortable.You will still get the care you need. You may have a dry mouth and a sense of thirst. You will be given good mouth care and ice chips to help. There are many choices you can make to help you live as well as possible and remain comfortable. | If you decide not to have a ventilator or BiPAP, we can give you medicine to help you breathe easier. Sometimes people with lung disease do not want any machines. They no longer want to try to fix their lung problems but want to allow natural death to come. They prefer to be comfortable and have medicine control their shortness of breath or fear caused by breathing problems. Some people feel relaxed when:• Oxygen is given through a soft, flexible nose tube.• They meditate (focus on calming thoughts).• They pray.• They listen to music.There are many choices you can make to help you live as well as possible and remain comfortable. |
The final instruction in each document is the following:
| Tube Feeding: What You Should Know | Help With Breathing: What You Should Know |
| If you do not want to try the tube feeding, you need to tell your doctor and family. Plans can be made to follow your wishes. | If you do not want to try the ventilator or BiPAP, you need to tell your doctor and family. We can make plans that follow your wishes. |
The documents contain no comparable assurance about following your wishes if you choose to use the feeding tube, ventilator or BiPAP