Terri Schiavo and the “Perverse Mercy” of Death by Starvation

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By Mary Pesarchick, Catholic Stand, May 2, AD2018

[The] administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, …should be considered …ordinaryand proportionate, and as such morally obligatory, …until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering. St. Pope John Paul II, Address to International Congress on “Life Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas,” March 20, 200

March 31 marked the anniversary of the death of Terri Schiavo, a 41-year-old, profoundly disabled woman who died in 2005 from severe dehydration after being legally denied all food and water for fourteen days. Thirteen years later, in spite of the horror of Terri’s ordeal, removal of food and water continues to be promoted by death with dignity advocates and some medical personnel as the ultimate exercise of a patient’s “right to die.”

As a result, in the United States and around the world, laws which protect the vulnerable from becoming victims of circumstances like Terri’s are being repealed. What St. Pope John Paul II taught as “ordinary and proportionate” is being re-defined as an extraordinary intervention, particularly in cases where a person’s quality of life is considered too poor to be worth continuing. Case in point, a recent law passed in Oregon which Oregon Right to Life warns will allow “the starving and dehydrating to death of patients with dementia or mental illness.”

The pervasiveness of this type of thinking is also reflected in the growing popularity of what is called Voluntary Stoppage of Eating and Drinking (VSED). People who are chronically ill or who simply wish to avoid the pains brought on by the aging process are choosing to end their own lives by deliberately denying themselves nourishment — death by starvation. And, with misguided sympathy, there are family members and medical personnel willing to help them do it.

Terri’s Story

In 1990, at 26 years old, Terri Schiavo became severely neurologically impaired following a heart attack. Although the resulting brain damage rendered her unable to speak or move by herself, Terri was able to breathe on her own and received nutrition through a feeding tube. Consequently, her condition was not fatal as long as she received this basic medical care.

However, in 1998, her husband and legal guardian, Michael Schiavo, filed a legal petition to withdraw Terri’s feeding tube. He claimed  Terri had expressed to him that, if she became significantly disabled, she did not want her life prolonged through artificial means.  In 2001, Judge George Greer ruled that Michael’s testimony sufficiently represented Terri’s wishes and ordered the removal of the feeding tube. Despite four more years of legal appeals and last-minute efforts by her family, the clergy, the courts, and even Congress, the judge’s ruling was upheld.

France’s “Terri Schiavo”

Currently, in France, Terri’s story is repeating itself.  Vincent Lambert, a 42-year-old quadriplegic has been hospitalized for ten years following a severe auto accident and is considered to be in a vegetative state. The hospital staff repeatedly ordered the removal of his feeding tube, stating that to continue to give food and water is to act with “unreasonable obstinacy” toward Lambert. As in the Schiavo case, Lambert’s family has sued the hospital to prevent this from happening.

Unfortunately, in 2015, the French Supreme Court and the European Court for Human Rights ruled against Lambert’s parents, effectively ending the legal appeal process. The family managed to delay the inevitable for two years, but the hospital is now determined to act. Unless doctors heed the pleas from Pope Francis and thousands of other pro-life advocates, they will begin the “merciful” act of starving Lambert to death.

Equating Spoon-feeding With Life Support

If either Terri Schiavo or Vincent Lambert had previously had the opportunity to compose an advanced directive, the tragedy of their circumstances may have been averted. An advanced directive details the extent of the medical intervention a person is willing to undergo to preserve their life in the event they can no longer speak for themselves.

How specific those instructions must be, however, recently became a point of controversy in Oregon. On the state’s official Advanced Directive Form, a patient could indicate whether they wanted life-support and/or a feeding tube. However, according to the law, refusing a feeding tube did not constitute an additional refusal of nutrition that may be administered through non-medical means. Therefore, services such as spoon-feeding must be provided as long as the person could safely swallow food and water.

Remarkably, the spoon-feeding requirement was challenged in a 2016 lawsuit by a man named Bill Harris who was unabashedly committed to helping his wife die.

“Denying Her Last Wish”

Nora Harris, a 64-year-old former librarian, was diagnosed with early-onset Alzheimer’s Disease in 2009. At that time, she and her husband, Bill, lived in California. While there, they had a lawyer draw up an advanced directive for Nora, designating her husband as her health-care proxy and specifying that she did not want any artificial means of life-support, including a feeding tube.

Then, as reported by the Washington Post, the couple moved to Oregon, assuming that, because it was the first state to legalize physician-assisted suicide, it would be a place where Nora “could die on her own terms.” However, they found that Oregon’s Advanced Directive Law required all such documents, even those completed out-of-state, to conform to the regulations of Oregon’s statute with its mandatory spoon-feeding.

As the Alzheimer’s disease progressed, Nora became unable to feed herself independently. However, she did open her mouth and accepted food whenever the staff offered it to her. With this intervention, Nora was able to gain weight and was able to leave hospice care.  (USA Today, 8/20/17)

But Bill Harris claimed the nursing home staff was denying Nora her last wish to die if she could no longer independently care for herself. He filed, ironically, a Protective Order motion to prevent the staff from spoon-feeding her. 

Oregon’s New Advanced Directive Law

Because Nora Harris’s advanced directive did not explicitly prohibit spoon-feeding, her husband’s motion was denied. Judge Patricia Crain ruled that by accepting the food offered by the nursing home staff, Nora “may have changed her mind” and wanted to be kept alive. Nora passed away in October 2017, accepting food up until two days before she died. In spite of that, her husband maintained that “Nora did not have a peaceful death.”

The Nora Harris case motivated the Oregon legislature to “update” the Advanced Directive statute to “to better address the individual’s values and reduce confusion as to which type of directive is most appropriate.” The revisions were passed by the state legislature in February and await the governor’s signature.

The changes to the law are indirect and “technical”, and therein lies the danger, according to Oregon Right to Life.

[Now] a person who appoints a healthcare representative, but makes no decisions regarding end of life care, [is] granting his or her healthcare representative the power …to remove access to food and water, even when the principal is not in [a]…statutorily defined end of life situation, and even if this is not the will of the principal.

Subtle, But Potentially Lethal, Changes

As explained by Ian Tuttle of the National Review,

The [Oregon] bill removes the statutory definition of “tube feeding” and “life support,” and replaces the word “desires” with “preferences.”

These understated changes are intended to create interpretive ambiguity. Even though [a patient] is conscious, willful, and able to eat, does continuing to feed them constitute “life support”? These questions would be left up to the courts, or to [government appointed] regulatory bodies.

Ultimately, in Oregon, it is no longer guaranteed that food will be provided whenever possible. The onus is on the patient to explicitly request that spoon-feeding be attempted. Obviously, this places those who have diminished mental capabilities at a distinct, and dangerous, disadvantage.

It is expected that other states, particularly those where assisted suicide is legal, will follow Oregon’s example and begin re-writing their advanced directives to reflect this new interpretation of “life-support.”

Voluntary Stoppage of Eating and Drinking (VSED)

In the six states that legalized physician-assisted suicide, there are specific criteria a patient must meet in order to access those services. The person must be terminally ill with a diagnosis of fewer than six months to live. They also must be mentally competent to personally make the request for the life-ending drugs.

But what about people with disabilities or chronic illnesses, such as Alzheimer’s or Parkinson’s, where the decrease in physical and mental function is gradual and death could be delayed for many years? Since they don’t qualify for a doctor-prescribed means of taking their own life, many are resorting to willfully starving and dehydrating themselves to death before their debilitation becomes severe.

And this is very troubling, writes Fr. Tad Pacholczyk of the National Catholic Bioethics Center (NCBC).

Choosing not to eat or drink can be packaged as a noble and well-intentioned way to avoid intense pain and suffering, but VSED ultimately represents a flawed choice. It subtly draws us into the mistake of treating the objective good of our life as if it were an evil to be quelled or extinguished. We have a moral duty to preserve and protect our life, and to use ordinary means of doing so. Suicide, even by starvation and dehydration, is still suicide and is never morally acceptable.

“A Form of Assault”

VSED is not to be confused with the normal decrease in appetite that occurs as a disease progresses and various bodily processes shut down. Forcing a patient to take food and water under these circumstances may be more detrimental to them and cause additional suffering. Consequently, assures Fr. Pacholczyk, there are no ethical concerns in scaling back or even removing nutrition.

However, to voluntarily deny oneself nourishment before the body reaches that point results in “a form of assault” against the body which then begins a natural reaction of self-preservation.

[The] body reacts by releasing chemicals, [in] a form of “shock” response to an escalating traumatic situation. [Consequently], pain medications [are] required to control the significant suffering and discomfort [emphasis added]that would otherwise have ensued from …dehydration/starvation.

While Fr. Pacholczyk acknowledges that “the real evil that often needs to be quelled or extinguished is the pain,” doctors need to more effectively address the pain brought on by the medical condition the patient is suffering from instead of assisting them to commit suicide.

Starvation is Not a “Peaceful” Death

The right to die movement has very successfully argued that feeding a patient only prolongs suffering and that withdrawing food and water is a natural and compassionate means of ending a life. However, Bobby Schindler, Terri’s brother, is committed to exposing their lie that death by starvation is  “peaceful,” “painless,” and “dignified.”

He describes Terri’s last days:

After almost two weeks without food or water, my sister’s lips were horribly cracked, to the point where they were blistering. Her skin became jaundice with areas that turned different shades of blue [and] became markedly dehydrated from the lack of water. Terri’s breathing became rapid and uncontrollable… Her moaning, at times, was raucous, which indicated to us the insufferable pain she was experiencing. Terri’s face became skeletal, with blood pooling in her deeply sunken eyes and her teeth protruding forward.

What will be forever seared in my memory is the look of utter horror on my sister’s face …

It is for this reality that St. Pope John Paul II calls euthanasia a “false mercy, and indeed a disturbing ‘perversion’ of mercy.”

True “compassion” leads to sharing another’s pain; it does not kill the person whose suffering we cannot bear. Moreover, the act of euthanasia appears all the more perverse if it is carried out by those, like relatives, who are supposed to treat a family member with patience and love, or by those, such as doctors, who by virtue of their specific profession are supposed to care for the sick person even in the most painful terminal stages. Evangelum Vitae (66)

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About the Author: 

Proudly Catholic, Mary has been happily married for 21 years and is Mom to four teenagers. She is steadfastly committed to the pro-life cause and serves as the chairperson of the Respect Life committee at her parish. Mary lives in Buffalo, NY where she is a passionate fan of the Bills and writes about them for the website Our Turf Football. She is hopeful that her long-suffering loyalty to the team might help reduce her time in purgatory.