“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.”

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.