Not Dead Yet’s Public Comment to U.S. Dept. of Health and Human Services on Affordable Care Act’s Nondiscrimination Regulations

September 30, 2013                Via online submission to


U.S. Department of Health and Human Services
Office for Civil Rights
Attention: 1557 RFI (RIN 0945-AA02),
Hubert H. Humphrey Building, Room 509F,
200 Independence Avenue SW.
Washington, DC  20201


Re:      Docket No. HHS-OCR-2013-0007 (Request for Information Regarding Nondiscrimination in Certain Health Programs or Activities)


Not Dead Yet is a national disability rights group, which advocates for non-discrimination against people with disabilities in the context of what is often referred to as “end-of-life” care.  We have signed onto the excellent comments submitted by the Disability Rights Education and Defense Fund (DREDF), Access Living, Coalition for Disability Health Equity, Greater Boston Legal Services (GBLS), and New York Lawyers for the Public Interest (NYLPI) in response to U.S. Department of Health and Human Services Office for Civil Rights Request for Information Regarding Nondiscrimination in Certain Health Programs or Activities (RFI).  We also wish to submit the following brief additional comments.




National Disability Rights Network Report

On May 24, 2012, the National Disability Rights Network (NDRN) issued a groundbreaking report condemning third party decisions to withhold medical treatment including hydration and nutrition from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional and civil rights of individuals with disabilities.  NDRN is the national association of the federally funded disability protection and advocacy agencies in all 50 states, charged to protect the civil rights of people with disabilities.  The NDRN Report states:

In recent years, new types of assistive and medical technology and procedures have emerged that allow people with disabilities, even those with the most significant disabilities, to live longer lives and improve their quality of life to live outside of institutions in their own homes in the community. The legacy of eugenics however, and the basic discriminatory structures that underlie it, are still powerful factors in medical decision making by some doctors and surrogate decision makers for people with disabilities. These technologies and procedures have not only been used to enhance quality of life, but they have also been used, at times, to reinforce social policies that devalue people with disabilities and keep them separate from community life. In fact, there are times, as this report will describe where physicians recommend and family or other surrogate decision makers decide to not provide a needed transplant, to withhold medical treatment including hydration and nutrition of individuals without a terminal condition, or to sterilize people all on the basis of their disabilities. Applied in these ways, medical decision making and procedures are discriminatory and deny basic constitutional rights to individuals with disabilities including the rights to liberty, privacy, and other statutory and common law rights.  Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, at pp. 10-11.

Too many in the health care system have given virtual “carte blanche” powers to surrogates so long as they decide to deny life-sustaining care.  This is not acceptable.

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 without consent 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.” What the NDRN report emphasizes is that people with disabilities are entitled to constitutional protections including 14th Amendment due process as well as statutory civil rights protections when third parties are seeking to withhold life-sustaining treatment.

Illustrative cases

Two cases illustrate this problem as it impacts people with developmental disabilities.  In the 2001 case of Tina Cartrette, the mother of a developmentally disabled woman in her 20’s who had lived in state funded facilities and group homes since age 5 was permitted to withhold tube feeding and fluids from her daughter after she recovered from a seizure and related health setbacks.  I recently wrote a blog about the NDRN Report, also providing the full text of my op ed published about the Cartrette case.

A more recent case in Pennsylvania was successfully challenged by the Protection and Advocacy (“P&A”) agency, saving the life of David Hockenberry.  At age 53, Hockenberry had an intellectual disability and had resided in the Edensburg Center most of his life.  He got aspiration pneumonia in December 2007 and was hospitalized, where doctors treated him with mechanical ventilation for several weeks until he improved and no longer needed the ventilator.  However, his parents turned to the courts to establish their authority to refuse the ventilator and other treatments.  The parents lost in the lower court, and appealed to the state Supreme Court, which ultimately held “that where, as here, life-preserving treatment is at issue for an incompetent person who is not suffering from an end-stage condition or permanent unconsciousness, and that person has no health care agent, the Act mandates that the care must be provided.” IN RE D.L.H., 2 A.3d 505 (2010).  Had it not been for the effective action of the P&A attorneys, it is doubtful that Mr. Hockenberry would have survived.

Brain Injury and the Rush To Judgment

Professional literature in the field of neurology indicates that there is an appropriate “waiting period” for rendering a relatively though not absolutely certain prognosis that the individual is permanently unconscious, generally 90 days for anoxic brain injury and six months to one year for traumatic brain injury.  For example, “The Multisociety Task Force on PVS (1994) proposed the term permanent vegetative state in cases where the probability of recovery from unconsciousness is extremely low (12 months for patients with traumatic brain injury and 3 months for patients with non-traumatic [anoxic] brain injury.)” Katz, The Minimally Conscious State (MCS) and Related Disorders of Consciousness: Definitions, Diagnostic Criteria, Natural History and Prognosis.

Illustrative Cases

Nevertheless, in a number of cases, a “rush to judgment” has become evident, with medical providers and/or family members pushing to withdraw treatment before the individual has been given the appropriate time to emerge from an unconscious state.

Haleigh Poutre was an 11-year-old girl injured by parental abuse in Massachusetts. Withdrawal of a feeding tube was sought by the state, which had taken custody of Haleigh, less than two weeks post-injury.  The abusive father went to court to keep the feeding tube in order to avoid murder charges against him.  State legal papers described her as almost “brain dead.”  The judge in the case ruled that Haleigh Poutre should “pass away with dignity.”  The day after the ruling the news was released that Poutre had clearly recovered some level of consciousness and she was transferred to rehabilitation.

Jesse Ramirez was brain injured in a 2007 car accident in Arizona which occurred during argument between Mr. and Mrs. Ramirez.  Mr. Ramirez was in coma and doctors could not say if he would wake up.  Nine days after the accident, Mrs. Ramirez wanted to remove his feeding tube and fluids.  His parents had to go to court to stop her.  Three weeks after accident, he woke up, but would likely have died before then from dehydration if Mrs. Ramirez had been successful in withholding fluids.

The only reason we know about these cases is that they went to the courts.  In these two cases, the court delay gave the individual time to awaken which they would have otherwise been denied.

The extent of this rush to judgment problem is anyone’s guess.  In 2004 a prominent Chicago physician, Joel Frader, co-authored an ethics journal article stating:  “Reliable information about the character of an injured person’s future may be especially hard to find at those times during the course of treatment when there may be a ‘convenient’ window of opportunity to stop interventions and allow the patient to die.” (Nelson, Frader, “Brain Trauma and Surrogate Decisionmaking: Dogmas, Challenges and Response”, J Clin Ethics, Winter 2004, 15(4): 264-76.)  The reference to “a‘convenient’ window of opportunity to stop interventions and allow the patient to die” is great cause for concern, but doesn’t reveal how often this occurs.

However, A New York Times Magazine article in December 2011 included and explanation for the practice and a statement by perhaps the leading authority on consciousness following brain injury that it is “not uncommon.”  Here are relevant excerpts from the article:

   Once a patient progresses to minimal consciousness, we can’t predict what’s going to happen,” says Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College and author of a coming book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.”. . . .

  Early on, when families have the option to pull the plug, it’s almost impossible to tell what the long-term prognosis will be,” says Dr. Soojin Park, a neurointensivist at the University of Pennsylvania Hospital,. . . . “And then later, when we have the certainty — that this is as good as it’s going to get — that option is gone. Because by then, the patient is breathing on their own. There’s no more plug to pull.

  At that point, families who want to end a loved one’s suffering must either have the feeding tube removed, or agree to let the next bacterial infection win out, unhindered by antibiotics. Many families find choosing these deaths much more difficult than turning off a ventilator. …

   It is not uncommon for doctors to assume the worst and advise family members to withdraw care early. They do so in part because they see their duty as helping loved ones face reality. But Fins argues that this is a cop-out. “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution,” he says. “It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.

A Drug That Wakes the Near Dead, NYTimes Magazine, Jeneen Interlandi, Dec 1, 2011 (

Thus, leading neurologists admit that it is not uncommon for people with brain injuries, some of whom will recover, to have their lives ended through withdrawing ventilators before their prognosis is known. This is in order to ensure that others who will not recover (to an “acceptable” extent) will also have their lives ended, because by waiting the latter may be weaned from ventilators and only depend on feeding tubes, which families are often less willing to remove.


Problems of Disability Discrimination in POLST Implementation

Physician Orders for Life-Sustaining Treatment are an increasingly popular tool for advance care planning.  They are short, brightly colored forms that provide immediately actionable medical orders because they are signed by a physician.

According to the National POLST Paradigm Task Force:

…[T]he intended audience for use of POLST … is patients for whom the health care professional’s response to the surprise question- “Would I be surprised if this patient died in the next 12 months?”- is “No, I would not be surprised.” These include: (1) seriously ill patients with life-limiting progressive advanced illness; and (2) patients with advanced frailty.

Those criteria are much broader than the hospice definition of terminal, and sweep in many disabled people, people with muscular dystrophy, multiple sclerosis, Parkinson’s, and many other conditions, including me.  Many of us are working, raising families, and living normal lives with some adaptations.  Medical professionals specializing in disability understand this seeming “paradox”, but most practitioners do not.

It’s clear that POLST is being used with people who are not terminal.  The one-year surprise question is unreliable in predicting terminal status, yet two state laws even extend POLST to those with a 5-year prognosis.  The California Advocates for Nursing Home Reform report that nursing facilities pressured all residents to have a POLST.  Yet people with non-terminal disabilities are forced into nursing facilities every day in this country due to the inability to secure appropriate home care services.  We also see that Delaware suspended use of POLST when it was found that it was being used for people who did not meet the state’s criteria for POLST eligibility in that they were not terminal.

Some might ask, what’s wrong with using POLST to document the treatment wishes of people with long-term but non-terminal disabilities?

One problem is that POLST requires a simple “yes” or “no” choice regarding each type of life-sustaining treatment, without allowing different choices for the same treatment depending upon the context, events and circumstances surrounding the need for the treatment.  This only makes sense for someone who is expecting to die soon, regardless of the specific situation that arises.

Other problems include:

  • POLST literature demonstrates bias against life-sustaining technologies
  • POLST forms in many states do not require patient signature with doctor’s, so may not reflect person’s wishes
  • Lack of independent research on POLST
  • Medical professionals not held accountable for errors and violations

For a more detailed description of these issues, including citations to independent sources, please go to


Problems with Disability Discrimination in Organ Procurement and Transplant Eligibility

In several public comments submitted to the Organ Procurement and Transplantation Network (OPTN), Not Dead Yet has emphasized the importance of ensuring that individuals and families are able to make decisions about the withdrawal of life sustaining treatment prior to and independent from any contacts from organ procurement organizations or related organ procurement activities.  We are concerned that organ procurement activities may unfairly and wrongfully tip the scales in health care decision-making at a vulnerable time by implying that someone’s organs are more valuable than his or her life with significant disabilities.

In addition, OPTN’s failure to address discrimination toward people with disabilities is made eminently clear by a recently proposed “bylaws rewrite” section on nondiscrimination (Section 5.4.A):

A candidates’ citizenship or residency status in the United States must not be considered when allocating deceased donor organs to candidates for transplantation.  Allocation of deceased donor organs must not be influenced positively or negatively by political influence, national origin, race, sex, religion, or financial status.

The failure to include disability status in the listing of protected groups speaks volumes.  Disability based discrimination in organ transplant eligibility has received recurring attention from the disability community over the years.  I refer you to a recent policy paper by the Autistic Self-Advocacy Network for a thorough discussion:

Not Dead Yet’s comment letters to OPTN, including independent sources and citations, is available at



Actions to address these civil rights violations should be undertaken in a variety of ways, some of which can be incorporated into the ACA 1557 regulations.  Not Dead Yet recommends the following:

Nothing About Us Without Us:

  • Require representation by people with disabilities on relevant advisory committees and commissions
  • Enact appropriate requirements regarding composition, standards and procedural protections governing hospital ethics committees

Evidence Gathering:

  • Conduct research on scope and nature of problem with questionable health care decisions leading to non-voluntary/involuntary death
  • Conduct independent research on POLST implementation and abuse problems

Improved Disclosures:

  • Include new disclosure requirement regarding state and hospital futility policies under Patient Self-Determination Act of 1991
  • Include disclosure requirements regarding brain injury recovery waiting periods to prevent premature and unreliable prognoses from causing decision to withdraw life support

Protective Regulations:

  • Require nondiscrimination in organ eligibility
  • Prohibit organ procurement organizations and personnel from approaching individuals/families to solicit organ donations before informed decision has been made to withdraw life-sustaining treatment
  • Require nondiscrimination in suicide prevention

Thank you for the opportunity to submit these comments.  If you would like any clarification or further information, please don’t hesitate to contact me at


Respectfully submitted,


Diane Coleman, J.D.


Not Dead Yet

497 State Street

Rochester, NY  14608