The National Council on Disability met on May 6th at the Ed Roberts Campus in San Francisco. This is a presidentially appointed Council that advises the Administration on disability policy. The Council always offers opportunities for public comment, and NDY has been asking NCD to help lead efforts to address abuses in health care decisions that end the lives of people with disabilities, such as futility policies and unlawful surrogate decisions to deny life-sustaining care. NDY’s previous comments to NCD on this subject are here, here (video) and here.
After I provided the following public comment Tuesday evening, one of the Council members, Ari Ne’eman of the Autistic Self Advocacy Network, articulated his concerns about these issues as well. NCD’s Chair, Jeff Rosen, then directed staff to work with interested Council members to develop a proposal for addressing these concerns that the Council could consider. This is a very important step, and reason for hope that there is more to come.
Public Comments to the National Council on Disability
May 6, 2014
“End the UNEthics Committees”
or “Nothing About Us Without Us!”
I’m speaking on behalf of Not Dead Yet, and requesting NCD’s leadership to help us address civil rights violations that people with disabilities encounter when third parties make decisions without our consent to withhold medical treatment that we need to survive. These decisions are often made with the involvement and approval of hospital ethics consultants and ethics committees.
In fact, this week, Not Dead Yet is joining the Autistic Self Advocacy Network in a friend of the court brief in a Wisconsin case in which a 13-year-old boy with intellectual disabilities was denied routine care for treatable pneumonia and died when his parents followed the recommendations of Dr. Norman Fost after he provided an ethics consultation, recommendations that, according to the Wisconsin protection and advocacy agency, violated state law.
In 1992, the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) mandated the establishment of ethics committees. By the year 2000, over 95 percent of community hospitals had established a clinical ethics committee.
Ethics committees are a prevalent means of giving the illusion of due process in health care decision-making by hospitals and other facilities. Yet there are virtually no accepted standards for ethics committee composition, procedures or decision-making guidelines. In some states, these committees have the authority to determine whether life-sustaining treatment can be withdrawn against the will of the person or their surrogate decision maker, often making determinations based on the degree of disability and perceived quality of life.
Only a few states have ethics committee statutes, but they typically require physicians, nurses, social workers and hospital administrators to be members, while community representatives or patient representatives are optional.
Not Dead Yet advocates in Texas have proposed that at least one quarter of ethics committee members not be staff of the hospital, and that ethics committees must include members of both disability and aging advocacy organizations. While additional procedural protections are needed as well, the principle of “nothing about us without us” provides an excellent first step.
We urge NCD to assist in developing model legislation and policies regarding ethics committees, and to assist us in establishing a dialogue with appropriate federal agencies and associations of state level policy makers to address these issues further.
The in-hospital Ethics Committees have a terrible conflict of interest when the patient is a charity patient for the hospital. So often, the elderly/disabled on Medicare and Medicaid suffer from one or more of the 27 Adverse Events that are not reimbursed to Hospitals under federal law. For instance, falls and in-house infections and serious reactions to medication are not reimbursed. Additionally, the elderly/disabled are more prone to exceed the Diagnosis Related Group Caps. when they are hospitalized, When CMS and private insurance refuses to reimburse, Medicare/Medicaid patients “unknowingly” become charity patients for the hospitals.
In 2005, Medicare started to look at “pay for performance” and non beneficial over treatment of the elderly/disabled that produces complications is also often not reimbursed when over-treatment in the outpatient setting precipitates expensive hospitalization.
The CMS reimbursement protocols and the budgets since 2005 have increasingly put the elderly disabled on Medicare/Medicaid at great risk of having their deaths hastened because the hospitals are often not being reimbursed for their care. The extrapolation of covert and overt(default) DNR code status into the hospital charts of the elderly as a means to cap costs of treatment that will not be reimbursed may be epidemic in our acute care hospitals.
My personal experience with a covert unilateral DNR and an in-house Ethics Committee was terrible. I was told that I would be invited, etc. to make comments, . but wasn’t and when I wrote letters to the hospital asking about the Ethics investigation, I was ignored. I couldn’t get any help or advice from the BAR. . I complained both the the federal authorities and the State authorities. Apparently, the unilateral DNR is merely an ethics violation under public policy developed since the 1991 PSDA was passed into law —-even though the unilateral DNR to save money is a crime under federal and state law.
Medical Futility, as such, cannot be used by hospitals to withhold treatment from the elderly/disabled on Medicare/Medicaid unless there is some kind of due-process procedure approved by the state. Therefore, the covert/overt unilateral DNRs that are usually not even discovered and not punished under the law become the solution to protecting the hospitals’ bottom lines. When elderly/disabled Medicare patients die in the hospital, this appears to be in the normal course of events. If the unilateral DNR is somehow discovered before the patient is dead, the hospital/physician merely ask for forgiveness and let The Hospital Ethics Committee take care of it.
The Hospital Ethics Committees have a conflict of interest and should be outlawed. This is not “due process of law.” The elderly and the disabled are endangered but don’t even know it most of the time because there appears to be no law that requires either the hospital or the physician or Medicare/Medicaid to inform patients that their treatment will not be reimbursed and that they are charity patients for the hospital. My husband and I were shocked that he was a charity case because we thought we had the best insurance, i.e. Medicare and Tri-Care-For-Life outside of the US Congress.