Dying of Thirst

In 1990, at age 26, my sister Terri Schindler Schiavo experienced a mysterious cardio-respiratory arrest for which no cause was ever determined.

She was diagnosed with hypoxic encephalopathy – lack of oxygen to the brain – but was able to breathe on her own and maintain vital functions. She was provided a percutaneous endoscopic gastrostomy (PEG) tube for medically assisted nutrition and hydration.

After a period of aggressive therapy, Terri began to make some improvement; in particular, she began to form words. Sadly, this progress was interrupted when her estranged husband and legal guardian, Michael Schiavo, ordered all rehabilitation stopped. He subsequently warehoused her in various nursing homes.

In May 1998, Schiavo filed a petition to withdraw Terri’s PEG. In January 2000, Judge George W. Greer heard this petition in Pinellas County, Florida. Following the trial, Greer ordered Terri’s feeding tube removed. On March 31, 2005, Terri died of marked dehydration after more than 13 days without food and water. She was 41 years old.
It is still difficult to explain why Terri’s situation received such enormous national and international attention. Indeed, what happened to my sister—removal of basic care, food and hydration—had been occurring long before her case found its way to court.

Clearly the public was not aware that a powerful death lobby had been working clandestinely to make dehydrating vulnerable persons like Terri rather easy. By the time of my sister’s passing, removing feeding tubes from cognitively disabled patients was routine in all 50 states. Now this movement has even more people in the crosshairs.
How has something considered barbaric not that long ago become so common?

Certainly many dynamics have brought us to this point. I believe, however, that two significant changes opened these flood gates.

First is the creation by physicians of the persistent vegetative state (PVS) diagnosis. When a person is diagnosed as PVS, he or she is essentially declared unresponsive and written off by most of the medical community from making any meaningful recovery.
However, a PVS diagnosis demands considerable skill, the expertise of a multidisciplinary team and repeated observations over time. Nevertheless, recent studies alarmingly show that more than 40 percent of those diagnosed as PVS are, in fact, not unconscious but may be in a minimally conscious state or have severe sensory deficits.1

What makes the diagnosis so lethal is that physicians use it as a criterion – every day – to justify killing patients, as happened to Terri. Imagine using as a gauge to kill the most vulnerable among us a diagnosis with an error rate of nearly 50 percent.
We are killing brain-injured and countless other people based on a diagnosis that’s essentially the flip of a coin.

Second is the medical community’s decision to redefine medically assisted nutrition and hydration as artificial nutrition and hydration. Once considered basic and ordinary care, providing food and water via a feeding tube is now categorized as medical treatment.
As a result, a person now has the right to refuse this treatment not only for him- or herself but also for others, as Michael Schiavo did, a decision often based on so-called “best interest” scenarios.

Tragically, denying the disabled food and water has become a routine part of medicine. It becomes an issue only when family members disagree, as in Terri’s case. A growing number of physicians are making quality-of-life judgments to dehydrate patients, and they are permitted to do so because a feeding tube is now deemed medical treatment.

Although no statistics are available to indicate exactly how many persons are starved and dehydrated to death because “loved ones” don’t feel like taking on the “burden” of their care, it is safe to say dehydrating the disabled occurs at an alarming rate.
In fact, Michael Schiavo’s attorney, a euthanasia advocate, has admitted that denying food and hydration is widely practiced.

How have we become so disconnected from the value and dignity of our medically vulnerable that dehydrating them to death is about as common as buying a loaf of bread? How have we sunk so far?

To have any chance to end this madness, we must first immediately stop using PVS as the reason to kill the brain-injured. Eliminating the term persistent vegetative state, which only degrades a person’s intrinsic dignity, also would help. Instead, state of minimal consciousness can be used to promote compassion towards these individuals. Equally important is to understand that medically assisted nutrition and hydration is basic and ordinary care.

Someone once said that when life becomes difficult, change your life, not your morals. Sadly, faced with difficult life choices, too many today accept blithe assurances from the bioethics movement that immoral actions are merely “medical ethics.”

Bobby Schindler is Executive Director of the Terri Schiavo Life & Hope Network that works to protect our medically vulnerable.

1. K Andrews, L Murphy, R Munday, and C Littlewood (1996-07-06). “Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit”. British Medical Journal 313 (7048): 13–16.

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