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.
Great to know of this progress. But I should note that the link to the letter from Dr. Hammes, and the link to the “Dear Colleague” letter, do not work. These bring me to a page that basically asks me to prove that I am an administrator of your web site! I hope these can be repaired. Thanks!
Thanks for the alert – we’ll try to get that fixed today.
In reading the above comments and the letter(s) it appears that the Gunderson’s Advanced Planning Program “Respecting Choices” and these fact sheets regarding
choices are intended to be used with the class of patients described in the CMS Trial, i.e. The Medicare Care Choices Model” introduced by CMS in 2014.
This trial “provides a new option for Medicare beneficiaries with advanced cancers, chronic obstructive pulmonary disease, congestive heart failure and HIV/AIDS who meet hospice eligibility requirements under the Medicare hospice benefit, to receive palliative care services from certain hospice providers while concurrently receiving services provided by their curative care providers.” (Fact Sheet: Medicare Care Choices Model) CMS.gov.)
The CMS Fact Sheet indicates that U.S. Sen. Ron Wyden of Oregon, who authored the provisions that established the model said” “Patients and their families should have every choice available to them when faced with life-threatening illness. Allowing Medicare coverage to continue while under hospice care means that patients no longer have to make a false choice between hospice and curative care.”
Of course, the Senator doesn’t indicate how the “model” will impact the “treating” physician, the clinician, in a legal sense, . who, under current law, has NO obligation in most of the United States to SEEK informed consent for palliative care/ltransition to Hospice as opposed to aggressive curative care where everything is done to keep the patient alive as long as possible.
(These two distinct standards of care are reimbursed out of the people’s Medicare Purse and right now, under law, patients can’t be on both standards of care at the same time. (It was the vision of the 1991 Patient Self Determination Act, passed into law at the request of the financial arm of Medicare, that the Hospice entitlement would save millions of dollars in end-of-life costs when elderly/disbled Medicare/Medicaid patients would ELECT to shorten their lives by refusing expensive life-extending treatment and hospitalization and die comfortably in their own personal residences or within residential nursing home. These patients would elect to shorten their lives in order to shorten their suffering unto certain death after a terminal prognosis from the treating physician. This vision failed because physicians/for[-profit clinics were NOT placed under the provisions of the 1991 PSDA and did not cooperate with its goals of (preventing cruel over treatment of the elderly/disabled on Medicare and (2) saving money for Medicare and private insurance when patients elected to go onto Hospice in their own interests to achieve a more peaceful and less painful and stressful death outside of expensive ICU and CCU units in Acute Care Hospitals}
If the law is changed because the trial is successful in saving money for Medicare and private Big Insurance on end-of-life costs and in providing easier deaths, and the law is changed, will this mean that HOSPICE will no longer be an elective and will be mandatory for the elderly and the disabled on Medicare? Was this the compromise that was made between the Republicans and lthe Democrats concerning Medicare when the ACA was passed into law?
Of course, the treating physician will, during the trial, stop billing for any kind of curative care as soon as CMS stops reimbursing for non-beneficial curative care in order not to be subjected to any punitive reimbursement protocols already passed into law.by CMS and the Congress.
If the trial becomes law, the Hospitals will no longer have to resort to unilateral covert and overt DNR Code status in order to protect their bottom lines because “over treatment for profit” will be discouraged and these “terminal” patients in these specific categories when treated in the outpatient setting will die sooner rather than later at much less expense to Big Insurance and Medicare outside of ICU and CCU because they will be referred to Hospice at the beginning of the last six months of their lives —or maybe sooner if the legal definition of “terminal” is extended beyond six months when the law is changed to permit concurrent eligibility for both standards of care.
Since it appears that the Hospices who will apply to take part in the TRIAL will be
“sweetened” with $500.00 extra for every Hospice patient that they recruit from the ranks of the targeted patients (COPD, Heart Problems, AIDS, and advanced cancers) this TRIAL will be a boon to the for-profit and not-for-profit hospices who will need “biased” fact sheets to help in their recruitment efforts.
How will this TRIAL impact the Disability Community if the law is changed to make Hospice mandatory when curative care is no longer an option and no longer reimbursed?
”
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Correction: The Hospice “extra” payment will be $400.00 per month, not $500.00, as incorrectly indicated above.