The National Council on Disability (NCD) “is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees , an Executive Director appointed by the Chairman, and eleven, full-time professional staff.” (Read more about NCD at http://www.ncd.gov/about)
Not Dead Yet has worked with NCD in the past, most notably on their position paper and update on assisted suicide.
Periodically, NCD has “comment opportunities” for stakeholders in the disability community. You can attend and comment in person or by phone. There is a list of meeting and events here.
Here’s the comment that Diane Coleman offered today via phone:
Comments by Diane Coleman and Not Dead Yet Before the National Council on Disability – April 22, 2013
I’m commenting today to urge NCD to take a leadership position in addressing the problem of so-called futile care laws and policies which allow doctors to deny life-sustaining treatment to people with disabilities who want and need it. The common thread running through stories we hear is that our lives with disability are seen as less worth living, so much less that health care providers too often think that death is the correct course. They press this viewpoint on us, our families and sometimes even overrule us when we disagree.
Futility policies are not a new thing, but there are indications that doctors have become increasingly comfortable using them to withdraw life-sustaining treatment to end our lives. They provide doctors a legal safe harbor to act based on whatever medical predictions and quality of life judgments that they may feel are consistent with community standards.
Texas has the most infamous futility law, which requires an ethics committee consultation and then, after only 10 days, allows doctors and hospitals to withdraw treatment. Repeated efforts to amend the Texas law have failed. This year’s amendment proposal is so weak that disability advocates have had to oppose it. Bob Kafka, a national ADAPT leader who is also the head of Not Dead Yet of Texas, testified against SB 303:
“Our opposition … is based on our experiences with the medical community, who with all good intentions, make recommendations/decisions that if implemented would have resulted in the death of people who now are living members of our organizations. . . . Right now most of the appeal process is focused on ethics committees in hospitals that have them. Currently there are no standards for ethics committees in regard to size, membership, procedures or even having one. We believe that there is an inherent conflict of interest to have a committee convened at the hospital that the doctors have privileges.
“ADAPT/NDY recommends that a conflict free process outside of the hospital setting be established that has substantial membership of the disability community as members.”
Last year the National Disability Rights Network issued a report condemning decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of our basic constitutional rights. The report states that reliance on ethics committees and consultations is insufficient protection.
I’ve communicated with protection and advocacy (P&A) attorneys in several states who had to go to court to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital. Because of P&A intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana and Pennsylvania. That’s just from my limited knowledge.
What I think the NDRN report tells us is that this futility problem is huge and we’ve just seen the tip of the iceberg. Some groundwork has been laid, but serous work remains to be done and I hope that NCD will help lead that effort.
We’ll be catching up this week with news and information that’s piled up over the past week or two.
Thank you. NDY makes me feel somewhat “protected”.
While I agree that Texas has inappropriate disability (futility) laws, the harm therein is nothing compared to what the probate courts in Texas and the whole country are doing to aging and disabled people. NDR’s name implies the very antithesis of what happens in probate court, where people are treated as if they were already dead in a protection rackett called “guardianship”. Why isn’t NDR going after the exploitation and abuse that’s occurring in guardianship in probate courts?
NDY has a “relatively” narrow focus – life and death issues affecting people with disabilities. There *are* other groups going after guardianship, but like NDY, their small budgets hamper their efforts when up against the financial interests that keep abuse and exploitation alive in guardianship.
I agree with Diane Coleman’s comment to the NCD.
I have warned (at length) about the risks (e.g. of bias) of leaving these life and death decisions with hospital ethics committees. http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1367800
I would love to see the cases in which P&A intervened.
It is the inadequacy of the 1991 Patient Self Determination Act and the resulting State laws governing the CHOICE to Live and the Choice to Die that has become such a threat to the disabled and to the elderly on government Medicare or Medicaid.
If you are elderly and/or disabled, and “Not Dead Yet” better keep that DNR out of your medical chart in and out of the hospital if you really aren’t ready to die earlier than necessary.
This 1991 law passed by the Congress did not include clinics and physicians and now over 20 years later, we see that for the past many years, physicians/hospitals are inappropriately and illegally extrapolating Unilateral DNR code status to the charts of the elderly/disabled to unilaterally and often covertly limit life-saving or life-extending treatments that they KNOW Medicare and the private insurers will not reimburse under existing reimbursement protocols.
Both “Observation” Status (for which Medicare is being sued) and unilateral and hospital “influenced” DNR Code status is being misused to cap the costs of treatments that are not being reimbursed because of errors, omissions, and overtreatment (non-beneficial treatments for profit) that Medicare and the private insurers who supplement Medicare will NOT reimburse.
Pretty ugly stuff going on!
In States, like Texas, who are trying to solve the “medical futility” problem, we see there are still problems in the “fairness” aspect of the existing law that they are trying to address.
Most lay persons do not understand that the leadership who formulated the 1991 Patient Self Determination Act contemplated that the elderly on Medicare/Medicaid with late-stage disease would often elect to SHORTEN their LIVES to shorten their suffering by electing comfort care and Hospice IRREGARDLESS of whether or not the life-extending treatment refused was medically futile, as determined by some “due process” procedure employed under hospital policy and state law.
However, because we have two legal standards of care created and paid for under Medicare/Medicaid, physicians, didn’t want to be put under the PSDA and to have any legal obligation to SEEK informed consent for either Curative Care OR Palliative Care, whichever standard of care the educated patient and the physician TOGETHER decide is in the patients best interests.
Because physicians, especially the specialists, had no legal obligation uner the law to talk about the option of doing NOTHING and transitioning to comfort/Hospitce Care as necessary, they didn’t. There is no profit to be made in doing nothing.
Overtreatment for profit of elderly patients with late-stage diseases or diseases that would generally progress to late stage then became possible and accounts for at least 30% of the End-of-Life expenses in our Acute Care Hospitals.
In trying to solve the problem, the government has created a dangerous situation for the elderly and the disables because of the disparate discrimination against the elderly/disabled created by reimbursement protocols that punish non-beneficial treatments and errors and omissions.
Instead of clarifying the Federal Law of the 1991 PSDA, we now have the States passing new laws to try to STOP the wholesale misuse of “Observation Status” and “DNR Code” Status (resulting from requests for NO CPR) that is shortening the lives of elderly and disabled American citizens without their informed consent.
Yes! Professor Pope has always warned about the unfairness of Hospital-based ethics committees who so often have a conflict of interest, and especially when the “treatment” in question might not be reimbursed by Medicare/Medicaid and/or any private insurer even though it isn’t deemed “medically futile” under any due-process procedure.
With every federal budget, the danger to the elderly and disabled grows —imder BOTH political parties. The under-the-radar policy of “hurry up and die” gives birth to schemes like “observation status” and unilateral covert and overt DNR code status. Reimbursement protocols such as Dianosis Group Caps, Present on Admission conditions, errors and omissions, and non-beneficial overtreatmen for profit means that hospitals/physicians increasingly have to eat the costs of treatment because the patients cannot be billed.
Please read the Article “Hospital Do-Not-Resuscitate Orders: Why They Have Failed and How to Fix Them” published by the Journal of General Internal Medicine on the Internet in February 2011.
Obviously, “physicians inappropriately extrapolate DNR orders to limit other treatments” that they know will not be reimbursed by CMS and the private insurers.
Pretty ugly stuff going on!
Thank you very much for your recent comments – and I will make it a point to look up the article you have cited in this comment.
Also! Be sure to read Judith Graham’s 3/14/13 Article in the New York Times New Old Age Blog where she reports on a new study in The New Englnd Journal of Medicine about “New Data to Consider in D.N.R. Decisions.”
There is an organization of Health Care Journalists and I can’t understand why they have not forced the bioethicists to talk about the connection of “medical futility” to the reality of fiscal futility for hospitals and physicians when treatments are NOT REIMBURSED by CMS because of reimbursement protocols.
If the so-called free press is not looking out for the interests of the disabled and the elderly, how can the American public learn the truth?