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:
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.conversationproject.org, reads in part:
The Conversation Project goes even further in specifically eliciting fears of long term disability and translating them into decisions to forego live-saving treatment:
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 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.