‘RIGHT TO DIE’ FOR THE LESS THAN PERFECT: A SCARY NEW TREND?

By: Jennifer Del Villar

1. Thesis Statement

It is my opinion that a trend in our society may be taking shape with the legal battle and ultimate death of Terri Schaivo. As a society, are we more likely to allow persons who are “less than perfect” to be legally disguarded with the “right to die” movement?

I have no doubt there are a number of individuals who strongly support the right to die movement and, should they find themselves in a terminal medical situation, would possibly choose the right to die; and I don’t necessarily believe that should be denied.

However, with all the miraculous technology and medical advances we are seeing on a daily basis, should we not allow every possible chance for an individual to at least live the life they’re given either by birth or by some random act? And, as such, do not individuals acting as guardians and overseers owe those in their care every possible chance to live out that life, in whatever form it comes? I say yes; if there is any doubt the individual whose life is on the line may want a chance to live, then that right must be protected. If the guardian does not protect them, then the judicial system must.

I’m quite afraid that with rising medical costs, the rising sense of the “me” generation, and many other factors, there are those who this “right to die” may be thrust upon without their approval. We may believe that if we were in their situation we would definitely choose to die, however, the individual themselves may not feel that way; as such, their ultimate right to life is denied.

Our governing bodies need to be extremely diligent in providing the necessary protection for our most vulnerable individuals, those with terminal or non-terminal health impairments, to ensure they are not denied their “right to life.”

2. Scope

In this paper, I will primarily use Terri Schaivo’s case in general to analyze how: 1) guardianship affected her right to life; 2) how her Fourteenth Amendment Right to Equal protection under the law may not have been adequately provided; and 3) how under 42 U.S.C. Section 12101(a)(7) as a disabled individual, rather than an terminally ill individual, Terri became powerless to make her own choice in the right to life decision and as such, was ultimately “terminated” by discriminated.

3. Argument

Our society as a whole has become obsessed with perfection. It is thrown at us everywhere. If you do not fit the picture of perfection your life generally can be viewed as being less “worthwhile” in comparison with those viewed as having “perfection.” While this is a sad statement of our times, it has become an overwhelming reality.

We as a society are very gung-ho in trying to make sure that discrimination does not occur against individuals based upon their race, gender or socioeconomic status, though we know prejudice is alive and well even in those venues.

As time progresses, there is even an underlying tone of prejudice based upon what one may perceive “beauty” to be. People are starving themselves to be thin enough for society to accept them and place them in a higher place of esteem; unfortunately, it is quite possible this discrimination, whether truly self projected or from an outside source, was the original underlying cause of Terri’s disability.

When we deal with the discrimination of the disabled, these underlying prejudices become even more illicit as the rights and protection of these most vulnerable of citizens are placed in the balance. Especially since a mind frame is coming in to play where we may wrongly believe that a disabled individual is better off “dead than alive;” because, what type of life could they be living in a disabled body or mind.

What would the world have lost if Christopher Reeves’ disability was thought as an ultimate death sentence because he needed an artificial breathing machine to survive? While it was most obvious Christopher Reeve was fully cognitive, who is to say that someone’s cognitive state may not be “cognitive enough” for their own liking even though it doesn’t measure up to that of societies standards. Could their life still not be one worth living in their own opinion?

Christopher Reeves left this world immeasurably benefited by being allowed to remain with us, even though his quality of life may have been thought to be less than perfect. In fact, perhaps in his disability his life became more significant.

As I keep talking in terms of disability of the body and whether or not one is in a cognitive state or not, I think it is imperative that we look at what the term cognitive means. In a case where an individual truly has a disabling accident and is truly “not with us anymore in a mental state,” the National Institute of Neurological Disorders and Stroke, NIH defines it as an individual being in “a persistent vegetative state (PVS). This PVS sometimes following a coma refers to a condition in which individuals have lost cognitive neurological function and awareness of the environment but retain non-cognitive function and a preserved sleep-wake cycle.FN1

The Fla. Stat. § 765.101(12), under which the Schaivo case was judged defines the vegetative state as “A permanent and irreversible condition of unconsciousness in which there is: (a) The absence of voluntary action or cognitive behavior of any kind; and (b) an inability to communicate or interact purposefully with the environment.

There were contradictory facts throughout the Schaivo case as to whether or not Terri truly was in a PVS state; as there were moments when she did show signs of cognition.

When one is in a non-cognitive state, if a living will has not been created, an individual who acts on your behalf, or a guardian, is appointed. The guardian should be an individual who has your best interests in mind and has some clue as to what your ultimate wishes might be. That individual might be a spouse, parents or an adult child; in some cases it may be necessary to have a court appointed guardian. In a case where a non-cognitive individual’s right to life or right to die is in question, guardianship is an extremely important role.

In one such case, Cruzan v. Missouri Dept. of Health, 497 U.S. 261, 287 (1990) FN2 guardianship became an issue in the fact of whether Cruzan’s guardians, her parents, Lester and Joyce Cruzan had the authority to withdraw their daughter’s feeding tube after a horrible car accident left her body functioning, but her mind in a persistent vegetative state with no cognitive skills.

The Missouri lower courts were uncomfortable in making a decision to allow another individual, her parents, to remove Cruzan’s feeding tube as in their opinion, the testimony did not prove by clear and convincing evidence Cruzan truly would want to refuse treatment by removing the feeding tube and ultimately die. The court, as it should have been, was looking at the due process and ultimate right to life of Cruzan.

As such, the Supreme Court of Missouri who did ultimately recognized the right to refuse treatment, felt that that certiorari to the Supreme Court of the United States was proper in deciding if the right to withdraw life sustaining treatment (or the right to refuse treatment) was allowable under the Constitution.

In the long wrong, the Supreme Court felt the right to die was allowable under the constitution as long as clear and convincing evidence that the guardians were following the true interest of the patient and there was no underlying reason the patient’s best interest was not at heart.

The feeding tube was removed from Cruzan after careful review of testimony including a statement Cruzan gave to her housemate of Cruzan’s indicating that she wouldn’t want to be kept alive by artificial means and live as a “vegetable.” Further, there was no argument between those who were looking out for Cruzan’s best interests and that the removal of the feeding tube was something Cruzan ultimately would have wanted.

In the Schaivo case, guardianship was under her husband, Michael Schaivo, from the time of her hospitalization through her death. While never successful, Schaivo’s parents filed several petitions to remove Michael Schaivo as guardian based upon his unwillingness to seek certain life saving and/or rehabilitative procedures for Terri over the years. FN3

Under Fla. Stat. § 744.3215 there are certain requirements that need to be met by a guardian; several of those rights, in my opinion, were not ultimately provided by her guardian, Michael Schaivo. Since a guardian ultimately holds the life and death of the patient in their hands, shouldn’t every safeguard to the relationship and character of the guardian be scrutinized?

Terri’s rights that did not seem to have been met under Fla. Stat. § 744.3215 are as follows: (a) To have an annual review of the guardianship report and plan; (d) To be treated humanely, with dignity and respect, and to be protected against abuse, neglect, and exploitation; (e) to have a qualified guardian; (i) to receive necessary services and rehabilitation. FN4

The courts should have stepped in and review the case in a more microscopic manner searching for clear cut evidence as to what Terri’s choice would have been in accepting or denying treatment. As mentioned earlier, there were even medical disagreements as to whether or not Terri was truly in a persistent vegetative state, which in disallowing medical treatment is a heavily weighed factor.

In a brief on one of the Schaivo cases by the “Not Dead Yet” FN5 organization, the guardianship of an individual and the need for “constitutional limits” to the authority such guardians have on an individual’s right to die was discussed. The main focus being that how can one individual (guardian) truly make a decision about the right to die based upon the quality of life of the “disabled” individual.

It was also brought up In re Guardianship of Schaivo, 2D05-968, (2005)FN6 that Schaivo’s parents argued that Judge Greer was “not fulfilling his judicial duties impartially while at the same time fulfilling his statutory duty to resolve the competing contentions of the parties as surrogate or proxy ‘to make decisions about life-prolonging procedures.’” The Schindler’s at one point in time felt that Greer was actually acting as a guardian, however, the court ultimately held that a judge acts more as a fact finder which is proper under the Fla. Statutes.

As I mentioned in regards to the Cruzan case, in certain cases of guardianship, it is extremely important to look at the motives of why a guardian would choose to allow an individual to be removed from a life saving mechanism. The patient, without the cognitive state, or perhaps in Terri’s position, the voice, has to rely on their guardian to choose life or death. Was it truly a case where Terri would have wanted to die? Or, was Michael Schaivo just ready to get on with his new family with the malpractice money he received and the additional monies he would receive upon Terri’s death?

The case of the judicial system not protecting the ultimate rights of Terri Schaivo in allowing for the re-administration of nutrition and water is one that I believe will be far reaching.

One of our fundamental rights as American citizens (and for that matter, as citizens of the world) is life. As stated in the 14th Amendment to the U.S. Constitution §1 “All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the state wherein they reside. No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.” In the Cruzan case, Missouri took their role seriously; I’m not so sure that in Terri Schaivo’s case, Florida did the same.

Let’s take a look at whether or not Terri Schaivo ultimately was given her full 14th Amendment rights to due process in regards to her constitutional right to life.
Under Fla. Stat. § 765.404 there is a legal standard which needs to be met prior to termination of “life support” or in this case, nutrition and hydration in which the persistent vegetative state is defined. FN7 There are physician testimonies that would lead one to believe it is ultimately possible that Terri was not in a persistent vegetative state. If clear evidence couldn’t be given that Terri was truly not in a PV state, then ultimately it was not the choice of her guardian to allow the removal of nutrition.

As we noted above that the Fla. Stat. § 765.101(12) defines the vegetative state as “A permanent and irreversible condition of unconsciousness in which there is: (b) an inability to communicate or interact purposefully with the environment. There has been contradictory evidence in regards to this point. Some have testified that Terri does have the ability to communicate and interact with other individuals. If proper rehabilitation was allowed by her guardian, Michael Schaivo, would she have been a different person with a different life?

In the days prior to her death, Terri’s parents, Robert and Mary Schindler, petitioned the court for a temporary restraining order against Michael Schaivo, Judge George Greer and the Hospice of Florida Suncoast, Inc. to reestablish nutrition and hydration; the order was ultimately denied. FN8

As such, it is my opinion that Terri Schaivo’s “right to life” under the 14th Amendment was disregarded and abused by both her guardian, and the courts in not following the Fla. Statutes in regards to guardianship. Her parents, who truly had her best interest at heart, should have been allowed to be placed in the guardianship position; had they been, I have no doubt Terri would be alive today.

Ultimately, could this lack of proper judicial decision be the cause for another non-terminally ill disabled individual to fall under the same fate. With the ever increasing advent of “right to die” legislation, we as a society must be extremely cautious to exercise the right judgment in deciding whether or not an individual clearly would choose the “right to die” over a prolonged life by artificial means.

In dealing with the disabled community we add another element to this balance, if the disabled individual is clearly terminal in a medical sense, or rather has non-terminal health impairments. FN9 In an Amici Curiae Brief by the Not Dead Yet and ADAPT organizations, the “right to die” can also be associated with the “right for assisted suicide.” While clearly the Schaivo case wasn’t based on assisted suicide, where is the line drawn between the right to die and assisted suicide or could it be ultimately one in the same? Who is to say an individual who wants to die immediately after an accident may not change their feelings after a month of rehabilitation?

Again, we look at whose authority do we use in deciding whether or not an individuals life is truly worthy living based upon their own view of the quality of their life.

The “Americans with Disabilities Act of 1990” is discussed partially in 42 U.S.C. §12101 which established guidelines regarding discrimination based upon a disability. One of code sections indicates that “individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society.” FN10

Who’s to say that Terri, given the chance would not have gone on to contribute to society in a great way; perhaps in her life and death she already has. Here was a woman whose life was snuffed away in my opinion without her approval, but we call it the right to die under her “horrible” disability. I don’t believe she truly had a voice and in essence though her situation was ‘media-cized’ she truly was politically powerless.

Even in the midst of her case, Hollywood creeps into the mix with the movie “Million Dollar Baby” which ends the picture indicating that that it’s better to die than to live life as a disabled individual.

An article written by a disabled individual in the Harvard Crimson states that in regards to public support for Terri Schaivo’s removal of her nutrition and hydration is “not that most people understand or care about Terri Schaivo. Like many others with disabilities, I believe that the American public, to one degree or another holds that disabled people are better off dead. To put it in a simpler way, many Americans are bigots. A close examination of the facts of the Schaivo case reveals not a case of difficult decisions but a basic test of this country’s decency. FN11

Many disabled individuals find themselves in a precarious position with the ultimate death of Terri Schaivo. While there was very little doubt that Terri Schaivo would live her life disabled without the possibility of ever truly recovering, she in fact did have a life. Just because an individual’s life is impacted by a disability, does not mean that the life they’ve been given is not worth living.

Going even one step further, on a daily basis what impact does the disabled individual have those around them? I’m quite sure there are profound ways all of our lives are touched. I have no doubt, every smile that Terri Schaivo shared with her parents, were moments of ultimate joy that neither would ever wish away.

4. Conclusion

As I stated earlier, I think there are definitely cases where an individual or their guardian would and should reject a continued medical procedure that would allow a non-cognitive life to remain. If clear evidence supports that the individual in question would have chosen not to be kept alive or to live in a persistent vegetative state; then by all means that individual has the right to refuse medical treatment.

However, in the Terri Schaivo case, I believe she truly had moments of cognition and may have truly wanted to live; but that life was cut short by a guardian and a judicial system that did not give her the ultimate due process to which she was entitled. In fact, at one point, there was some evidence she wanted to live; but that was not allowable evidence.

Further, by the fact that she was not allowed a right to life, partially based upon a “less than perfect quality of life,” the repercussions on others in the disabled community who communicate in a similar manner as Terri may also be faced with the same outcome.

To even look deeper into a sad situation, what will the repercussions be to those who may not fit into Terri’s shadow?

What will happen to children born with disabilities in the future, rather than make every effort to save their lives will we choose that they might be better off not receiving life saving medical procedures and being allowed to die?

What about the elderly, or those with Alzheimer’s or Parkinson’s disease … would they be better off dead rather than spending the money, time and effort in making their quality of life the best it could be? While to perhaps some that quality of life may be less than perfect to those individuals living in that circumstance, perhaps that quality of life would be one with great rewards?

These possible scenarios must be faced head on. In a Kavorkianistic era what will keep our society from becoming overly “right to die” happy? With the rising costs of medical procedures, could a case such as Terri Schaivo – that of a woman who we couldn’t equivocally state wanted to die with 100% certainty; is it not a foreshadowing of the possible “sentence” that perhaps may befall the most powerless minority when they fall through the cracks?

FN1 Health Link, Medical College of Wisconsin. http://healthlink.mcw.edu/ article/ 921394859.html with information provided by the National Institute of Neurological Disorders and Stroke, National Institutes of Health. Article Created: 1999-03-14

FN2 Cruzan v. Missouri Dept. of Health, 497 U.S. 261, 287 (1990). This case was in regards to a woman, Nancy Cruzan who after an automobile accident in 1983 was diagnosed with being in a persistent vegetative state (PVS). While Cruzan was not artificially maintained with the exception of a feeding tube based upon her inability to swallow sufficiently, her parents knew, through a conversation with Cruzan to a housemate, that she would prefer the right to die with removal of nutrition and hydration should she become diagnosed as PVS.

FN3 Terri’s Fight Organization. Home page. http://www.terrisfight.org/. This website is an organization that outlines the fight for Terri’s life. It contains court documents and well as general timelines, etc.

FN4 Fla. Stat. § 744.3215 Rights of persons determined incapacitated of which those rights include (a) To have an annual review of the guardianship report and plan; (d) To be treated humanely, with dignity and respect, and to be protected against abuse, neglect, and exploitation; (e) to have a qualified guardian; (i)to receive necessary services and rehabilitation;

FN5 Not Dead Yet. Home Page. Radhert, George, Lapertosa, Max, Walden, Kenneth with assistance of Coleman, Diane. 21 Feb. 2003. Terri Schaivo brief. http://www.notdeadyet.org/docs/schaivobrief.html. This was in regards to the guardianship of Theresa Schaivo as a person whose legal decisions may be applied to “thousands of people with disabilities … relying on third parties as substitute decision-makers.” Further, “the need for constitutional limits on the powers of such decision makers.”

FN6 In Re Guardianship of Schaivo, No 2D05-968, 2005 WL 600377 (PI. Ct. App. March 16, 2005)(5cAfavo VF).

FN7 Fla. Stat. § 765.404: Persistent vegetative state. For persons in a persistent vegetative state, as determined by the attending physician in accordance with currently accepted medical standards, who have no advance directive and for whom there is no evidence indicating what the person would have wanted under such conditions, and for whom, after a reasonably diligent inquiry, no family or friends are available or willing to serve as a proxy to make health care decisions for them, life-prolonging procedures may be withheld or withdrawn under the following conditions: (1) The person has a judicially appointed guardian representing his or her best interest with authority to consent to medical treatment; and (2) The guardian and the person's attending physician, in consultation with the medical ethics committee of the facility where the patient is located, conclude that the condition is permanent and that there is no reasonable medical probability for recovery and that withholding or withdrawing life-prolonging procedures is in the best interest of the patient. If there is no medical ethics committee at the facility, the facility must have an arrangement with the medical ethics committee of another facility or with a community-based ethics committee approved by the Florida Bio-ethics Network. The ethics committee shall review the case with the guardian, in consultation with the person's attending physician, to determine whether the condition is permanent and there is no reasonable medical probability for recovery. The individual committee members and the facility associated with an ethics committee shall not be held liable in any civil action related to the performance of any duties required in this subsection.

FN8 Schindler-Schaivo v. Schaivo, Greer & Hospice of Fla. Suncoast, Inc., U.S. Dist. Court, Middle District of Fla, Tampa Division, 8-05-CV-530-T-27TBM (2005). The case requested that a temporary restraining order be given in order to allow “necessary medical treatment to sustain life and reestablish nutrition and hydration” This action was a response to a denial by Judge Greer directing Michael Schaivo to discontinue food and liquids. Terri Schaivo’s death was close at hand, and the petition was a last ditch effort to keep her alive.

FN9 Memphis Center for Independent Living. Home Page. Gold, Stephen and Coleman, Diane. 11 Nov. 1996. Amici Curia Brief of No Dead Yet and American Disabled for Attendant Programs Today. http://www.mcil.org/ mcil/mcil/amici004.htm. The Memphis Center for Independent Living Amici Curiae Brief of Not Dead Yet and American Disabled for Attendant Programs Today (ADAPT)” argues that people with disabilities, either terminal or non-terminal health impairments, are the class of people affected by the proposed right to assisted suicide.

FN10 42 U.S.C. 12101 begins the "Americans with Disabilities Act of 1990" which was established so that guidelines regarding discrimination based upon a disability was clearly defined and outlined.

FN11 Joe Ford, Focus: Bigotry and the Murder of Terri Schaivo, The Harvard Crimson, 25 Mar. (2005) http://www.thecrimson.com/article.aspx ?ref=506716. An article written by an individual with severe cerebral palsy who has been judged as being one with a cognitive disability who feels non-disabled individuals can view those with a disability as being “better off dead.”

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