Last December, a significant number of national and local disability rights organizations as well as individuals with disabilities and supporters signed onto a letter addressed to the Respecting Choices advance care planning program at Gundersen Health Systems in LaCrosse, Wisconsin. The letter criticized two documents for inaccuracy and bias in their discussions of feeding tubes, bipaps and ventilators. The documents were first discovered by Second Thoughts Connecticut activist Stephen Mendelsohn.
In response to our letter, Respecting Choices notified me that Dr. Hammes was out of the country until early January, but would be in contact upon his return. Before preparing a formal reply, Dr. Hammes requested a telephone conference, which took place on February 5th, involving Dr. Hammes and his Associate Director Linda Briggs, as well as Cathy Ludlum of Second Thoughts Connecticut and myself. This was followed by a letter from Dr. Hammes to the Disabilities Community which I’ve posted here at his request. A disability advocate in Wisconsin also brought to our attention a “Dear Colleague” letter from Respecting Choices to colleagues engaged in advanced care planning. On March 7, we had a second phone conference with Dr. Hammes to discuss the letter and determine our next steps.
As you can see in the letter below that Cathy Ludlum and I sent April 1st, Respecting Choices has discontinued sales of the two documents and we have agreed to form a committee to discuss potential revisions, with five members selected by Respecting Choices and five members by the disability community.
We believe that your support was essential to the progress that we have made thus far. Below is our letter reflecting that progress and our next steps:
April 1, 2014
Dear Dr. Hammes:
Thank you for your letter responding to our letter of December 20, 2013 and for the two phone calls that Cathy Ludlum of Second Thoughts Connecticut and I have had with you to begin addressing the concerns we raised about the Respecting Choices informational documents on feeding tubes and breathing devices. As you requested, I’ve posted your letter on our website.
We are gratified that you have suspended online sales of these two documents, pending the results of our efforts, but we’re disappointed that you haven’t issued a “recall” of the documents. We understand that you consider the documents to be fine if used as intended, but we consider some of the information to be factually incorrect no matter how the documents are used.
We have also been made aware of a “Dear Colleague” letter in which you offered to replace existing materials with new materials when they are ready. We appreciate that offer, but were initially concerned that this letter included an explicit statement that even after the new materials are ready, “You are not required to replace your current inventory.” Since then, you have stated that you will send replacement inventory to your colleagues, and we thank you for that.
To proceed with our discussion, we’ve agreed to convene a working group of ten people, five identified by you and your team and five by ours, to consider how the documents can be revised to address the concerns we raise in a manner acceptable to both Respecting Choices and the disability community, particularly the organizations and individuals who signed onto our letter.
As we move forward with our dialogue, we would like to acknowledge the statement in your letter:
As we discussed, Respecting Choices is in complete agreement with you that both feeding tubes and breathing support provide great value to many persons with disabilities, and can improve and prolong life. For these patients, these medical interventions clearly should be encouraged.
This is an important principle and goal that we endorse. Your letter also began a key discussion about the appropriate audience for these documents.
The fact sheets you referenced in your open letter are not intended to assist healthy adults, individuals with minor medical problems or individuals with disabilities with advance care planning. They are designed to be used by trained facilitators during conversations with competent patients who have serious, progressive, life-limiting conditions and who may face these treatment decisions and die in the near future.
As we have stated in our preliminary telephone conversations, some people who would seem to fit this description may have many years of productive and happy life ahead if they choose to use one of these medical devices. It’s essential that the information they receive is accurate and unbiased. If there is any bias, it should be toward encouraging patients to try these devices before ruling them out.
Thank you for your willingness to engage in this dialogue. We look forward to a constructive effort.
Sincerely,
Diane Coleman & Cathy Ludlum
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If you would like to be considered for the committee, please email me at dcoleman@notdeadyet.org.