NDRN’s Report Should Serve As a Call to Conscience for Health Care Providers

The recommendations contained in the National Disability Rights Network’s (NDRN)report, “Devaluing People With Disabilities: Medical ProceduresThat Violate Civil Rights,” 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 when third parties are seeking to withhold life-sustaining treatment. As NDRN Executive Director Curt Decker said in the press release accompanying the report:
“Every person is born with civil and human rights and an inherent dignity. The reality that this is happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse. This report is meant to start the conversation about how society can and should make medical decisions that uphold the constitutional rights of all people with disabilities.”
Reading the examples described in the report brought to mind a 2001 case in which Not Dead Yet, as well as the North Carolina protection and advocacy agency and a local Arc and center for independent living, tried to save the life of a 29-year-old woman with developmental disabilities. My op ed about the case was published in the Charlotte Observer on January 10, 2001 and is reprinted below in full text.
Non-voluntary euthanasia raises serious questions
Courts should not allow guardians of conscious, incompetent individuals to starve them to death.
by Diane Coleman
Should a guardian be permitted to withhold food and water from a conscious but incompetent person who is not terminally ill and did not ask to die?
Diane Arnder, mother of 29-year-old Tina Cartrette, has asked the North Carolina courts to give her the right to kill her daughter by removing a feeding tube that has provided the majority of her nutrition for several years. Cartrette has life-long physical and cognitive disabilities — disabilities with which many are unfamiliar, since medical professionals have so long recommended institutionalization as the treatment of choice, keeping severely disabled people out of sight and out of mind.
For those more familiar with disability issues, the media reports of Tina Cartrette’s situation leave many unanswered questions. Accepting that Dianne Arnder loved her daughter the way most parents do who institutionalize their children, what kind of love spans the distance between them now, after 25 years living apart?
Did Arnder ever become aware of Geraldo Rivera’s groundbreaking expose on substandard care, even atrocities, committed against residents of institutions? Did she hear about the many states that have closed all their institutions and moved residents into community settings with in-home support services?

How often did Arnder visit her daughter? Often enough to know whether poor quality of care might explain her joint contractures, and her recurring infections? Often enough to participate in federally mandated meetings to plan her care and discuss her options to move into a community setting?

Though many parents fight the system to enforce their child’s rights, perhaps Arnder was kept uninformed. Her words suggest that she accepted the stereotypes about her daughter, and the antiquated institutional system, without question.
But sympathy for the mother, or ignorance about disability, institutions and their alternatives, should not confuse us about the central issue in this case: Is North Carolina prepared to throw out current legal constraints on non-voluntary euthanasia? Such a change could endanger hundreds of thousands of older and disabled people whose families quietly wish they would hurry up and die, including those of us, like Tina Cartrette, who otherwise have years of life ahead of us.
During the 1980s, a right to refuse unwanted extraordinary or “heroic” life-sustaining medical treatment was legally defined, a right initially to be applied only to conscious people deemed “mentally competent.” The dangers of allowing other decision-makers — insurance companies, physicians, family members, state guardians — to engage in passive euthanasia seemed obvious at first.
Then, in 1990, in a case upholding a Missouri state law that placed limits on the rights of other decision-makers, the U.S. Supreme Court said that states have the right to ban, or legalize and regulate, such surrogate decision-making as a matter of privacy.
Like most states, North Carolina has decided that food and water by tube constitutes “medical treatment” that can be refused by guardians “on behalf of” an incompetent individual. This has been allowed even though many people in nursing homes and institutions are on tube feeding because there aren’t enough staff to feed them, rather than for medical reasons. But the law limits this narrow right to kill by starvation to (a) people who used to be deemed competent and who legally documented or clearly expressed their wish to reject tube-feeding, or (b) people who were never deemed competent who are terminal or permanently unconscious.

Of course, many well-meaning family members may only wish for their ill or disabled relative to be released from suffering. But a major study by the National Center on Elder Abuse estimated 450,000 cases of elder abuse and neglect in 1996, and the majority of known perpetrators were close family.

It doesn’t take a Ph.D. in psychology to recognize just whose misery some family members would like to put their older or disabled relative out of.
Add to that a prevalent law enforcement problem: a disturbing pattern of societal failure to identify and prosecute elder homicide.
Are the North Carolina courts being asked, in effect, to decide that some older and disabled individuals are not “persons” entitled to equal protection of the law?
It’s bad enough that disabled individuals and families are not getting the in-home support services they need, while the government pays more, on average, to keep individuals in nursing homes and other institutions, often against their will.
It’s bad enough that insurance coverage is frequently denied for necessary care, and that doctors don’t know or don’t disclose important information to patients and families, including the physician’s financial conflicts of interest in managed care.
It’s bad enough that medical forms are boilerplate, that doctors’ predictions are unreliable, and that many people’s legal rights in the health care system are violated every minute of every day without consequence.
What may look like compassion to some people looks more like contempt to many of us with disabilities who have too often heard that someone else thinks we would be better off dead.
After the media attention generated by the Cartrette case faded, the mother carried out the starvation and dehydration. She had reportedly learned about her option to do this from a new young doctor when Tina’s primary care doctor was on vacation.
Information about cases like Tina Cartrette’s and those described in the NDRN report is mostly anecdotal, with very little systematic data of any kind and nothing that reveals the scope of the problem. What we can all hope is that the NDRN report will call attention to the involuntary medical killing of people with disabilities and, more importantly, serve as a call to conscience and ultimately help turn the tide against this deadly practice. – Diane Coleman

3 thoughts on “NDRN’s Report Should Serve As a Call to Conscience for Health Care Providers

  1. Was Tina Killed? This is a horrible way to die! Of course, one dies of thirst first before dying from hunger. The lips swell, crack open, and bleed. The tongue swells out of the mouth. Your eyes would feel as if they have sand in them. Every muscle in one’s body would scream out in pain. And they call this a mercy killing? An innocent person can be tortured to death simply to make life easier for some lout. In Nazi Germany, Hitler FIRST started killing disabled persons. Hitler called them “useless eaters.”

  2. I just discovered your site. The only way to protect everyone is to get rid of advance directives/DNRs and the like and look upon doctors as technicians not those who decide quality of life decisions.

  3. I forgot to add to comment get rid of surrogates when a decision can be mean certain death.

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