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.