October 30, 2015
Not Dead Yet appreciates the opportunity to submit the following comments regarding the Administration on Aging’s guidelines for state Adult Protective Services (APS) programs. 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 support the comments submitted by the Autistic Self Advocacy Network, but wish to add comments specific to the issues of health care decision making.
A couple of weeks ago, Not Dead Yet was contacted by two sisters who are daughters of a woman in the hospital. They claimed that a third sister had decided to withhold tube feeding and fluids from their mother, despite the existence of a video taped statement by the mother that she wanted to continue treatment. The third sister held the mother’s proxy, but the other two sisters claimed that her motivation was inheritance. The sisters reported being banned from visiting their mother. We referred them to legal assistance. Over the nearly twenty years we have been in existence, we have received many calls like this. Given the high rate of elder financial abuse and the aging population, it is likely the frequency of such calls will increase.
Health care decision making laws vary by state, but are supposed to be governed by general principles set forth by the U.S. Supreme Court in the Cruzan decision (497 U.S. 261, 110 S. Ct. 2841, 111 L. Ed. 2d 224, 1990). The Court found that there is a right to refuse unwanted medical treatment, including food and fluids by tube, and that a surrogate decision maker could make that decision for a person who was unable to make and communicate their own decision. However, the surrogate’s decision must be based on what the person would wish rather than on the surrogate’s personal preference if they were in similar circumstances or other factors.
While advance directives are used by individuals to appoint a health care proxy and to indicate one’s wishes in various situations, most people have not prepared advance directives. To help address this issue, most states have adopted statutes designating a succession of relatives and guardians who may serve as surrogates for purposes of health care decision-making. Unfortunately, surrogate decisions to withhold or withdraw life-sustaining treatment from an individual are not always consistent with the provisions of the law or the wishes of the individual. In addition, health care providers sometimes withhold or withdraw life-sustaining treatment against the expressed wishes of the individual or their surrogate. In either case, there is a potential role for APS professionals to intercede and protect the life of the individual.
Work With State Protection & Advocacy Systems
The Autistic Self Advocacy Network recommended that APS work closely with the Protection and Advocacy system:
- Emphasize the importance of working with State Protection & Advocacy (P&A) organizations and Developmental Disability (DD) Councils
The APS program must ensure that the basic rights of the people it serves are appropriately protected. Pursuant to the recommendation in section one of the guidelines to collaborate with other organizations, we urge that the guidelines require coordination between the APS program and the state P&A and DD council. These organizations are typically the primary state-based advocates for people with disabilities. Working closely with them is essential to ensure that APS programs adequately protect the needs and rights of the clients and witnesses with disabilities.
We wholeheartedly agree. On May 24, 2012, the association of all state P&As, the National Disability Rights Network (NDRN), issued a groundbreaking report condemning unlawful third party decisions to withhold medical treatment, including hydration and nutrition from individuals with disabilities without a terminal condition or permanent unconsciousness (and implicitly without an advance directive), as a denial of the basic constitutional and civil rights of individuals 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. http://www.ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_People_with_Disabilities.pdf
While the NDRN Report focuses on people who may have never been deemed capable of fully informed health care decision making, these same concerns apply to people who were once deemed competent but are later deemed to lack capacity, including elders who may not be thought of as people with disabilities even when they are. In either situation, 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.
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 in a manner that is inconsistent with the law, the person’s wishes or both. 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 when third parties are seeking to withhold life-sustaining treatment.
Illustrative cases – Developmental Disability
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 in North Carolina 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. http://notdeadyet.org/2012/05/ndrns-report-should-serve-as-call-to.html
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.
Illustrative Case – Brain Injury and the Rush To Judgment
One group affected by surrogate decisions and unilateral provider decisions is people who are diagnosed as “vegetative” following a traumatic brain injury such as a car accident or an anoxic brain injury such as a stroke.
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. These continue to be the guidelines provided by the American Academy of Neurology. (https://www.aan.com/guidelines/home/getguidelinecontent/83)
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.
Jesse Ramirez was brain injured in a 2007 car accident in Arizona, which occurred during an argument between Mr. and Mrs. Ramirez. Mr. Ramirez was in a 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 the 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 this case is that the family members went to court and the ensuing delay gave Mr. Ramirez time to awaken which he would have otherwise been denied. (http://abcnews.go.com/print?id=3325418)
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 an 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 (http://www.nytimes.com/2011/12/04/magazine/can-ambien-wake-minimally-conscious.html?_r=3&pagewanted=all)
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.
APS Should Advocate Communication and Supported Decision-Making
APS professionals working with hospitals, nursing facilities, day treatment and rehabilitation programs are probably in the best position to be made aware of problems in the context of health care decision-making, although people living at home may also face these threats. APS professionals could include this subject in consultations with facility and program staff, who are most likely to be aware of family disputes over health care decisions. APS would have to be trained concerning the basic parameters of health care decisions laws in the state in which they work.
Investigation of problem cases would have to include efforts to discern the wishes of the person who is the subject of a third party’s health care decision. This again highlights the importance of the recommendations of the Autistic Self Advocacy Network, specifically pertaining to communication:
- Clarify the accessibility requirements for state APS program interviews of clients and witnesses
Section 3 of the guidelines recommends that APS phone data intake processes should be accessible to disabled clients and witnesses by means of TTY services. However, the guidelines do not mention the use of Augmentative and alternative communication (AAC) devices, interpreters, or other auxiliary aids and services when interviewing clients and witnesses who permanently or temporarily require these auxiliary aids or services for effective communication. We request that state APS programs be required to provide AAC devices, ASL interpreters, and other communication supports to these clients and witnesses when collecting information about their experiences. People with disabilities who cannot speak – such some autistic or Deaf individuals, those with developmental or intellectual disabilities, and those with speech impediments – need to have their voices heard. If they are not granted accommodations to ensure effective communication, the APS caseworker will not obtain complete information, and may even unfairly question the competency of the person to make a decision. The state APS programs must be prepared to make needed accommodations to ensure effective communication with individuals with disabilities. For example, they must possess basic AAC devices, such as letterboards and computer tablets pre-installed with AAC applications. In addition, by means of the psycho-social assessment, the APS should determine how the client or witness they are interviewing communicates and use that individual’s personal AAC device if possible, to ensure that the person can use the device with which they are the most familiar. This practice ensures that the most reliable method of communication is used.
In the case of someone with a communication disability for whom a form of assistive communication cannot be identified, every effort should nevertheless be made to understand the individual’s desires and preferences. These preferences may be expressed through facial expressions, behavior, sounds or signs. APS should consult with those familiar with the individual, who often have important information about how the individual communicates.
Too often, the wishes of an individual with a communication disability are ignored simply because no one will take the time to pay attention and understand what the person tries to communicate. This is unacceptable in any situation, but most especially in matters of life and death.
Finally, and again acknowledging the leadership of the Autistic Self Advocacy Network, APS professionals must become aware of the concepts and principles of supported health care decision making, as reflected in model legislation. (http://autisticadvocacy.org/wp-content/uploads/2014/07/ASAN-Supported-Decisionmaking-Model-Legislature.pdf) The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care. While the legislation is designed for people with developmental disabilities, many of its concepts and principles apply to anyone whose capacity is in question.
Addressing the problem of life-ending health care decisions by third parties that are unlawful and/or violate the person’s wishes is fully consistent with APS Ethical Principles and Best Practice Guidelines (http://www.ncea.aoa.gov/Stop_Abuse/Partners/APS/Guidelines.aspx). In fact, to ignore these problems would violate those same principle and guidelines. We urge APS to ensure that staff members are trained in health care decisions laws and issues so that they are able to protect elders and adults with disabilities from having their lives ended by others in violation of their rights.
Diane Coleman, JD, MBA
Not Dead Yet