September 8, 2015
Centers for Medicare & Medicaid Services
Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244-1850
To All Concerned Persons:
Not Dead Yet is a national disability rights group, which advocates for non-discrimination against people with disabilities in the context of what is often referred to as “end-of-life” care. The following comments are submitted with respect to the advance care planning proposal discussed at pages 246 and 247 of the Notice of Proposed Rule Making pertaining to “Medicare Program; Revisions to Payment Policies under the Physician Fee Schedule and Other Revisions to Part B for CY 2016.” We specifically address the CMS request for “comment on this proposal, including whether payment is needed and what type of incentives this proposal creates.”
First, Not Dead Yet does not, in general, oppose the concept of payment for appropriate physician-patient communications about health care decisions and advance care planning. We stated this in a 2013 press release entitled Not Dead Yet Provides Video and Written Comments on POLST to Institute of Medicine’s Committee on Approaching Death. More importantly, as noted in the recent U.S. News and World Report article, Is the ‘Death Panel’ Debate Dead?, our concerns about advance care planning discussions are that “A lot of the messaging focuses on telling people they would be better off dead than disabled, and that therefore they should decline treatment.”
Unfortunately, major early efforts in forming advance care planning policies in the U.S. excluded the voices of disability advocates. As leading palliative care physician Dr. Ira Byock said of the disability exclusion by Partnership for Caring (initially named “Last Acts”), “It was a deliberate decision — and it was irresponsible.” (See A Deliberate Decision?)
Our concerns about these issues are long standing and have been conveyed in a number of venues, including the following, which we urge CMS to review closely:
- Disability Perspectives on Public Policy In Advance Care Planning, Presentation made by Diane Coleman, JD, CEO, Not Dead Yet to the 3rd International Society of Advance Care Planning and End of Life Care Conference (Plenary Session), May 31, 2012
- A review of evidence supporting certain disability rights concerns about “end of life” advocacy, Workshop presentation made by Diane Coleman, JD, CEO, Not Dead Yet at the 3rd International Society of Advance Care Planning and End of Life Care Conference (May 31, 2012)
- National Disability Letter on Living With Feeding Tubes and Breathing Support
- NDY and Center for Disability Rights Comment Letter to New York Medicaid Opposing “Conversation Ready” Project As a Way to Save Money
The third and fourth items in this list have produced some favorable results.
Following the National Disability Letter on Living With Feeding Tubes and Breathing Support, the advance care planning organization Respecting Choices agreed to convene a committee with equal representation from Respecting Choices and a disability caucus led by Not Dead Yet to work on revising informational materials. The disability caucus includes people with disabilities who depend on life sustaining medical technology as well as a rehabilitation physician. Our goal was to remove anti-disability bias in the materials and to balance information related to the potential risks and benefits of treatment choices. Thus far, we have achieved full agreement on important revisions to the feeding tube document, and are close to agreement on the materials pertaining to breathing devices.
The initial outcome of the NDY and Center for Disability Rights Comment Letter to New York Medicaid Opposing “Conversation Ready” Project As a Way to Save Money was a meeting convened by CMS and the Administration on Community Living, which included Not Dead Yet, the Center for Disability Rights and the Conversation Project. It was agreed that advance care planning should not be promoted as a means of saving Medicaid funds, and New York state withdrew the “Conversation Ready” project as an option for state grant proposals in connection with a larger project to reduce hospitalizations.
These successes, while meaningful, are a proverbial “drop in the bucket” in view of the decades of massively well funded advance care planning policy work and initiatives already dominating the field, which are permeated by inaccuracies and an overwhelming, misleading and deadly bias against living with significant disability.
It is difficult to know how to undo the crushing, life ending damage already done and to prevent the proposed payment regulations from magnifying the negative impact of the horrendously anti-disability materials that already exist. But that should be a task that we can all agree on: the discrimination incorporated in existing materials must be eliminated and new materials must be developed, disseminated and promoted. Moreover, the implementation of any regulation for payment for advance care planning must be delayed until accurate and unbiased materials are available.
A serious and committed national effort, fully supported by CMS, is needed to accomplish this. It should begin with an expert committee and dedicated staff, a majority of whom are people with disabilities with first hand knowledge and experience of living with significant disabilities and depending on medical treatment, as well as consumer directed long term services and supports, to live fulfilling lives. Among these should be people who successfully made the transition from being nondisabled to being significantly disabled. Advance care planning and rehabilitation experts should also be involved. Convening such a diverse team of staff and advisory experts is essential to breaking down the old and rebuilding new policies and implementation approaches for advance care planning.
Correcting a history of discrimination can be difficult, but it can be done and must be done. So many lives depend on getting it right. Not Dead Yet and our partners in the disability community are ready to help lead that effort.
Diane Coleman, JD
Not Dead Yet