Not Dead Yet, the Center for Disability Rights, and 11 other NY based disability organizations, submitted public comments on the New York State Medicaid Delivery System Reform Incentive Payment Program (DSRIP) on May 28, 2014, alleging that one of the proposed projects would fund Medicaid providers to save money by steering people to choose death over living with disability. NY is offering grants to Medicaid “safety net” providers with a high proportion of Medicaid patients to reduce unnecessary hospitalizations, and encouraging applicants to implement three possible palliative care projects along with other projects on various aspects of healthcare.
One of the three palliative care projects is entitled “Conversation Ready,” and promotes advance care planning as a means of reducing “unnecessary” hospitalizations. For this to be effective, people on Medicaid would apparently be encouraged to refuse life-sustaining treatment as part of their advance care plan.
A recent Pew Research study found that:
. . . [A]bout two-thirds of whites (65%) say they would want to be allowed to die if they had an incurable disease and were suffering a great deal of pain, compared with 26% who say they would ask their doctors to do everything possible to save their lives in such circumstances. By contrast, a majority of blacks (61%) and about half of Hispanics (55%) say they would tell their doctors to do everything possible to save their lives if they had an incurable disease and were suffering a great deal of pain. [Views on End-of-Life Medical Treatments, November 21, 2013]
The “Conversation Ready” project is focused on safety net providers and includes the following requirement:
Identify care coordinators to work with community based and faith based partners to facilitate End of Life planning in a socially/belief system compatible manner to increase patients (sic) acceptance of program. [Pg. 57, DSRIP Toolkit]
Giving provider networks financial rewards for being successful in this effort allows them to reduce hospitalizations and healthcare costs by encouraging individuals to “choose” death over treatment. The method by which the “Conversation Ready” Project proposes to influence people are set forth in The Conversation Project, a website listed on page 57 of the state toolkit for grant applicants.
The Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.
The website, found at www.theconversationproject.org, reads in part:
You’ll see that this isn’t really about dying—it’s about figuring out how you want to live, till the very end.
“What matters to me is _____.”
Think about the things that are most important to you. What do you value most? What can you not imagine living without?
Understandably, individuals do not want to lose their abilities due to an accident, illness, or age. Yet disability is a natural part of the human experience and people adapt. It is unacceptable that a government program will encourage people to choose death over disability to prevent “unnecessary” hospitalization and save money.
The Conversation Project goes even further in specifically eliciting fears of long term disability and translating them into decisions to forego live-saving treatment:
What to talk about:
Are there circumstances that you would consider worse than death? (Long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones)
What kinds of aggressive treatment would you want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube)
When would it be okay to shift from a focus on curative care to a focus on comfort care alone?
There is no indication that the need for such interventions could be either short term or permanent. There is no information on the tens of thousands of disabled individuals who are currently living a fulfilling life while permanently using these devices.
The role of the healthcare professional should be to provide thorough information and support that assists people to adapt to disability. The medical community should never leverage common societal prejudices against disability to persuade people to forego healthcare in order to save money.
The Conversation Project website also holds out the prospect of life in a nursing facility as the only choice a disabled person might have if they become too disabled. But what about Olmstead and the New York adopted Community First Choice Option that establish the right to home and community based services under Medicaid? The state should never promote death through refusal of healthcare, rather than home and community based services, as the alternative to institutional placement.
Our conclusion and final recommendation was that the “Conversation Ready” Project must be removed from the Toolkit of projects applicants could select due to the: a) transparent effort to steer safety net community members to sign advance directives that decline lifesaving healthcare and b) extreme bias against people living with disabilities.
On the other hand, we supported the other two palliative care projects and made three recommendations to strengthen those programs:
- Ensure the provision of information and services relating to the Olmstead decision, Money Follows the Person, and the Community First Choice Option to patients and their families.
- Ensure the provision of independent living information and services to patients and their families.
- Require the proposed “quality committees” to include representatives from disability and aging advocacy organizations.
The full comment letter is posted on the NDY website under “Public Policy” activities.
The Conversation Project provides an example of how common fears and prejudices about life with disability are used to steer people to decline healthcare and choose death, but it’s far from the only example. Those who push these ideas and approaches are usually well meaning, but are ill informed about disability in all the typical ways. Nevertheless, when New York Medicaid officials openly link this objectionable practice to saving money, we can’t be silent. In fact, more disability advocates are needed to challenge this anti-disability approach to advance care planning across the country. We’ve been excluded from “the conversation” for far too long.
P.S. Thanks to the NY disability organizations that joined in these comments: Center for Disability Rights, New York Association on Independent Living, Center for Independence of the Disabled, New York, Westchester Disabled On the Move Inc., Southern Tier Independence Center, Independent Living Center of the Hudson Valley, Independent Living, Inc., Rockland Independent Living Center, AIM Independent Living Center, SKIP of New York, Inc., Harlem Independent Living Center, and Community Service Center of Greater Williamsburg.