Hosptial EMR are doing this now: encourage death for those who are chronic wtih disabilities and then insulting the disabled by saying that death is their decison..Do we have a hidden bonus $system in BC for hospitals and physicians who do this.
Posted: 28 May 2014 03:01 PM PDT
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.conversationproject.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.
