Not Dead Yet Submits Written Comments to IOM Transforming End-of-Life Care Committee

As folks who read this blog already know, the Institute of Medicine’s Transforming End-of-Life Care Committee sets aside a portion of its meeting agenda to receive public comments.  At the Committee’s second public meeting, held at Stanford on May 29, DREDF’s Marilyn Golden attended to provide public comments.

Not Dead Yet previously submitted written input concerning the composition of the Committee, particularly the lack of disability representation.  We didn’t receive a response to that submission, nor did the composition of the Committee change.

Since I was not able to attend in person, the Thursday before the second meeting, I wrote a letter requesting the opportunity to comment by telephone or Skype.  That was admittedly short notice for such a request, but I hoped I’d get lucky and prepared comments anyway, scrunching them into the three minutes provided for each speaker.

My hoped for accommodation didn’t work out (yet), but I adapted my planned remarks slightly for written format, added a few references, and submitted them this week.  There’s plenty more to say, but here’s a start.

Public Comment for the Institute of Medicine’s Transforming End-of-Life CareCommittee – By Diane Coleman, President/CEO, Not Dead Yet

Submitted June 4, 2013

My name is Diane Coleman and I’m the President and CEO of Not Dead Yet[i], a national disability rights organization focused on public policy related to many of the issues that this Committee will address.

Last Friday in upstate New York, the Democrat and Chronicle newspaper reported, “An appellate court has ruled that a feeding tube must be inserted for a severely disabled man … whose parents and attending physician did not want the use of the life-sustaining treatment.”[ii]  The New York Office for People with Developmental Disabilities sued on behalf of a 55-year-old man with cerebral palsy who faced increasing problems with aspiration pneumonia.  One of his nurses said that he is “alert, awake and communicative, and that he enjoys social interaction and activities.”  Because the state challenged the hospital and parents in court, and then appealed a negative lower court ruling, the man will live.

On May 24, 2012, National Disability Rights Network, or “NDRN”, the national association of protection and advocacy agencies federally charged to protect the civil rights of people with disabilities, issued a report entitled “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.”[iii]  After recounting several case stories, the report condemned decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional rights of individuals with disabilities.

The report stated that reliance on ethics committees and consultations are insufficient protections of a patient’s legal rights and that hospitals and other providers must “establish and implement due process protections….”

I’ve communicated with protection and advocacy attorneys in several states who had to go to court to try to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital.  Against the odds and because of their intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana, Pennsylvania and New York.  That’s just from my limited knowledge.

The recommendations contained in the NDRN Report constitute nothing less than a call to conscience for health care providers who are withholding life-sustaining treatment from people with disabilities who are not otherwise dying. Sometimes this is done at the request of family members or other surrogates, who are often persuaded or even pressured by the health care providers themselves.  Sometimes treatment is withheld based on the unilateral decision of the health care provider under what are often termed “futile care policies.”

A central problem is physicians’ “quality of life” judgments.  Research shows that physicians devalue the quality of life of people with disabilities compared to our own assessments.[iv] Doctors are not immune from the bias against disability that prevails in society overall.

From our perspective, there is an imbalance in end-of-life policy-making because it has ignored the problem of under-treatment of people who, but for the under-treatment, would not die.  In other words, sometimes “end-of-life” really means ending lives.  The first step in addressing this problem is admitting that it exists, and I would urge this Committee not to shy away from a serious examination of this problem despite the discomfort and other challenges that would accompany such an effort.

What the NDRN report emphasizes is that people with disabilities are entitled to constitutional protections when third parties are seeking to withhold life-sustaining treatment.  Anything less is unacceptable.

Like I said, it’s just a start.  To be continued. – Diane Coleman

2 thoughts on “Not Dead Yet Submits Written Comments to IOM Transforming End-of-Life Care Committee

  1. As an elderly Medicare eligible citizen, I agree with your comment that “sometimes end of life (policy) means ending life.” My body is now disabling me in many ways but my mind is working fine and I really don’t want the government to enable the hospitals/physicians to unilaterally decide when I am better off dead —and I don’t want the government to take away MY right or allow a physician to take away my right to decide when I’m better off dead.

    Of course, IF the 1991 Patient Self Determination Act had been clarified by The Congress, and IF for-profit physicians and clinics had been placed under the provisions of the 1991 PSDA and been compelled to SEEK informed consent for either curative care or Hospice/palliative care from elderly/disabled patients on Medicare/Medicaid, we wouldn’t have the MESS and SHAME that we have today.

    The for-profit medical community wouldn’t have been able to over treat the elderly/disabled for profit for over 20 years BECAUSE of the 1975 Age Discrimination Law, the violation of which IS considered a civil rights violation. There would have been educated “self rationing” by the patients themselves. Now we will have to do it with BIG DATA and the IPAB.

    Obviously, it was the intent of the 1991 PSDA to permit elderly/disabled Medicare patients or any patients to shorten their lives to shorten their suffering whether or not the refused life-extending treatment was deemed to be “medically futile” under some due process procedure established by the hospital and/or the state.

    Professor Thaddeos Pope, the foremost expert and historian of medical futility and the law, indicates that ONLY 5% of medical futility disputes are NOT settled within the hospital by the parties involved. Medical futility problems existed before the passing of the 1991 PSDA.

    Is the Medical Futility issue a kind of red herring that diverts or directs the attention of the public from the growing movement to passively euthanize the elderly and the disabled as a solution to the budget problems and to the protection of the profits of the private partners of Medicare?

    Professor Pope indicates that The PSDA is agnostic about the “right to live.” Obviously, this was intentional if this is true.

    Do those organizations charged with protecting the civil rights of the disabled under current law understand that the discrimination that is prohibited in the 1991 PSDA has NEVER been defined or prosecuted, to my knowledge.

    Apparently, a violation of the “prohibited discrimination” in the 1991 PSDA is NOT considered to be a civil rights violation and there is NO private right of action provided in the PSDA if there is a violation of the prohibited discrimination of the 1991 PSDA.

    In reality, the 1991 PSDA, when the prohibition of discrimination is NOT enforced, actually enables discrimination in the form of unilateral default DNR Code Status that shortens the lives of patients without their informed consent.

    The default unilateral DNR Code status can be extrapolated into the hospital charts of the elderly/disabled to LIMIT treatments that the Hospital KNOWS will not be reimbursed by CMS and the private insurers because of errors, omissions, and over treatment and complications.

    When hospitals/physicians ignore or violate the prohibition of the discrimination as vaguely expressed in the PSDA, the violation over the years since the PSDA was enacted appears to be treated merely as an ethics lapse that is reviewed by the Hospital Ethics Committee and not a a tort or a crime that is also a civil rights violation. Obviously, there is a conflict of interest for hospitals concerning “medical futility” AND unauthorized DNR Code Status.

    Do those organizations who are charged with protecting the civil rights of the disabled under the current US Civil Rights Laws understand that the discrimination that is prohibited in the 1991 Patient Self Determination Act is now being legalized and forgiven when unilateral, default, DNR Code Status is placed in the hospital charts of elderly/disabled Medicare/Medicaid patients without their consent? Their silence is held against them if they do NOT SPEAK out and request CPR.

    Certainly this wasn’t the intent of the 1991 PSDA, was it?

    Will this Committee engage in an honest and transparent conversation about end of life choices and end of life rights?

  2. my father was left abandon at st pauls hospitol on feb 14 2008 . A code blue was called then I met with hospitol staff saying they had been trying to get a stepdown ward for 5 years and said the standard of care was the norm. my fathers condition improoved on feb 21 where the icu staff said his condition had improved while he was in the ward and out of icu on the 22 of feb they madew a decision against my fathers wishes to put a dnar order while i was trying to get the order set aside the other staff turned my father on his good lung sufforcating him i stood by requesting them to provide medication that would have sustained his life and it was refused itaped the conversation which the dr admitted he was following the direction of the hospitol what ever happened to our rights?

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