End-of-Life and the Right to Refuse Treatment: Quinlan through Schiavo

The cases discussed here make clear the importance of making health decisions in advance and communicating them. Too often, decisions are put off, sometimes because people fear an advance directive is a license to kill; if individuals took time to examine the document, they would find that its simply an expression of individual values, whether that means extending life for as long as possible or allowing natural death to occur.

Others do not want to pay legal fees. That excuse is nonsense because the statutory form is available for free.

The result of indecision can be as tragic for a family as the initial event placing a family at that crossroad. William Colby, the lawyer who represented the Cruzan family, describes that family’s experience as follows:

As a father, I can’t imagine getting the phone call in the night from the state trooper. But to then layer on top of that call, years of your child not emerging from unconsciousness, facing and making the unbelievably horrific decision, even though you think it’s right, to remove a feeding tube, and then having to fight a highly public, highly contentious three-year legal battle to implement that decision. And then when you ultimately win, what you “win” is ten days of watching your child die.

Expressing your values, whatever they are, will limit the heartache Mr. Colby described. Everyone over the age of 18 should have an advance directive. Life is fragile, but medical care has improved to the point where most deaths are the result of a decision regarding medical treatment: respirators turned off, medicines not started, dialysis stopped, feeding tubes clamped. The question is who makes these emotional decisions when the patient has not executed an advance directive, and whether the decision will cause family strife. Colby then poses the following scenario:

But consider one side of that sad case that never received much media attention. There was a time, before her cardiac arrest, when Terri and Michael Schiavo and Bob and Mary Schindler lived together, took vacations together, had meals together. What if just once she had talked with her parents and husband together for two minutes, for a minute, about Nancy Cruzan? Would she have saved these people she cared about all of this incredible strife that we saw played out on the public stage? We don’t know. But I think there are families now who are being saved from that kind of family debate and dispute by Terri Schiavo, because they’re talking. That talk is a gift.

In re Quinlan, 355 A.2d 647 (N.J.) cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976)

On the night of April 15, 1975, for reasons that were unclear, Karen Quinlan ceased breathing for at least two 15 minute periods. Mouth-to-mouth resuscitation was in effective. She was taken to the hospital where she was unresponsive even to deep pain. A neurologist and other expert physicians who examined her characterized Karen as being in a “chronic persistent vegetative state.” One expert witness defined this as a “subject who remains with the capacity to maintain the vegetative parts of neurological function but who … no longer has any cognitive function.”

Karen’s parents sought to terminate mechanical life support and allow her natural death to occur. The State opposed those efforts. The case was eventually appealed to the New Jersey Supreme Court, where it found that developments in medical technology have obfuscated the use of the traditional definition of death. Historically, death was measured from the time the heart stopped. However, because modern resuscitative and supportive measure may restore heart function, death is now determined by showing “brain death.” In Karen’s case, although there was severe brain damage, she was not brain dead.

In analyzing the case, the Court turned to the right of privacy. “Here a loving parent, qua parent and raising the rights of his incompetent and profoundly damaged daughter, probably irreversibly doomed to no more than a biologically vegetative remnant of life, is before the court. He seeks authorization to abandon specialized technological procedures which can only maintain for a time a body having no potential for resumption or continuance of other than a “vegetative” existence.”

In addressing the State’s interest in protecting life, the Court found that the State’s interest contra weakens and the individual’s right to privacy grows as the degree of bodily invasion increases and the prognosis dims. Ultimately there comes a point at which the individual’s rights overcome the State interest.

“[I]f Karen were herself miraculously lucid for an interval (not altering the existing prognosis of the condition to which she would soon return) and perceptive of her irreversible condition, she could effectively decide upon discontinuance of the life-support apparatus, even if it meant the prospect of natural death. … We have no hesitancy in deciding … that no external compelling interest of the State could compel Karen to endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient life.” Although Karen could make this choice in a hypothetical sense, her reality was that she lacked capacity to express herself and would never regain that capacity. “The only practical way to prevent destruction of the right is to permit the guardian and family of Karen to render their best judgment, subject to the qualifications … as to whether she would exercise it in these circumstances.” The Court noted that “substituted judgment” is routinely used to protect individuals with disabilities, and that it could be used to determine what Karen would have chosen if she had capacity.

Ultimately, the Court found that life support could be discontinued if the guardian and Karen’s family concurred, and if the attending physician and the hospital ethics committee agreed there is no reasonable possibility that Karen would ever emerge from her present comatose condition to a cognitive, sapient state.

Cruzan v. Dir. Mo. Dep’t of Health, 497 U.S. 261 (1990)

On the night of January 11, 1983, Nancy Cruzan lost control of her car while driving in Missouri. The vehicle overturned, and she was found lying face down in a ditch without detectable respiratory or cardiac function. Although paramedics restored her breathing and heartbeat at the accident site, she suffered permanent brain damage because she was deprived of oxygen for an estimated 12 to 14 minutes.

After it became apparent Nancy would never recover, her parents asked the hospital to remove Nancy’s feeding and hydration tubes. When the hospital refused, they went to court for an order authorizing discontinuance of artificial nutrition and hydration. The trial court granted the petition, finding that a person in Nancy’s condition had a fundamental right under the State and Federal Constitutions to refuse or direct the withdrawal of “death prolonging procedures, and finding that Nancy had expressed herself during a conversation with a friend, saying she would not want to live unless she could do so at least half-way normal.

The Missouri Supreme Court reversed. It declined to read a broad right of privacy into the State Constitution which would “support the right of a person to refuse medical treatment in every circumstance,” and expressed doubt as to whether such a right existed under the United States Constitution. The court found that Missouri policy was in favor of life, and that oral statements made to a friend were unreliable for the purpose of determining Nancy’s intent.

The case was appealed to the Supreme Court and a decision was rendered on June 25, 1990. The Court first noted that informed consent is a firmly established right in America. It then found that “[t]he logical corollary of the doctrine of informed consent is that the patient generally possesses the right not to consent, that is, to refuse treatment.”

The Quinlan case was reviewed, with the U.S. Supreme Court finding few right-to-die cases prior to it, but 54 reported decisions from 1976 through 1988. “After Quinlan, however, most courts have based a right to refuse treatment either solely on the common-law right to informed consent or on both the common-law right and a constitutional privacy right.” A decision from Massachusetts reasoned “that an incompetent person retains the same rights as a competent individual ‘because the value of human dignity extends to both,’ the court adopted a ‘substituted judgment’ standard whereby courts were to determine what an incompetent individual’s decision would have been under the circumstances.” The Massachusetts court found the State’s interest in preserving life is greatest when an affliction is curable, but is lessened when the issue is not whether, but when, for how long, and at what cost a life may be briefly extended.

The cases reviewed by the U.S. Supreme Court “demonstrate[d] the common-law doctrine of informed consent is viewed as generally encompassing the right of a competent individual to refuse medical treatment. Beyond that, these cases demonstrate both similarity and diversity in their approaches to decision of what all agree is a perplexing question with unusually strong moral and ethical overtones.” The decisions used a variety of justifications for the conclusions they reached. The U.S. Supreme Court found that the question in Nancy’s case was whether the U.S. Constitution prohibits Missouri from choosing the rule of decision which it did.

Prior rulings indicated the individuals have a liberty interest in refusing certain treatment, but the court found that withdrawal of life sustaining treatment would have dramatic consequences, which justified weighing it against the state interest in preserving life. In Nancy’s case, the issue was whether a procedural requirement that Nancy’s wishes be proven by clear and convincing evidence was permissible. The Supreme Court held that Missouri could require clear and convincing evidence. “An erroneous decision not to terminate results in a maintenance of the status quo; the possibility of subsequent developments such as advancements in medical science, the discovery of new evidence regarding the patient’s intent, changes in the law, or simply the unexpected death of the patient despite the administration of life-sustaining treatment at least create the potential that a wrong decision will eventually be corrected or its impact mitigated. An erroneous decision to withdraw life-sustaining treatment, however, is not susceptible of correction.”

The Terri Schiavo Case

The Schiavo case differed from the Quinlan and Cruzan cases by involving settled law rather than breaking new legal ground on the right-to-die issue. The case instead involved a dispute between family members over what Schiavo’s wishes would have been for such a situation.”

Theresa Marie Schindler (“Terri”) was born on December 3, 1963, and lived with or near her parents in Pennsylvania until she married Michael Schiavo on November 10, 1984. Michael and Theresa moved to Florida in 1986. Terri and Michael were happily married and both were employed. They had no children.

On February 25, 1990, their lives changed. Terri, age 27, suffered a cardiac arrest as a result of a potassium imbalance. Michael called 911, and Terri was rushed to the hospital. She never regained consciousness.

Michael and Terri’s parents got along during the first three years after this tragedy. In 1993, they stopped speaking.

From 1990 through the time of her death, Terri lived in a nursing home. She was fed and hydrated by tube, and staff changed her diapers. The evidence appeared to be overwhelming that Terri was in a persistent vegetative state. By mid 1996, CAT scans of Terri’s brain showed an abnormal structure.

Michael was appointed as Terri’s guardian. In May, 1998, Michael petitioned the court to authorize discontinuance of life support. The Schindlers, Terri’s parents, opposed his motion.

Under Florida law (and Georgia law), a surrogate should ordinarily look to a living will or other evidence to determine the patient’s treatment preferences. Terri, however, had no advance directive and there was no written evidence concerning her end-of-life wishes. The litigation centered on the parties’ disagreement concerning what Terri would have wanted. Michael allegedly believed Terri would not want to live in a persistent vegetative state, while her parents allegedly believed Terri might recover and would want to fight for life. Legal presumptions aided Terri’s parents. “[A] surrogate decision-maker should err on the side of life…. In cases of doubt, [the court assumes] that a patient would choose to defend life in exercising his or her right of privacy.”

The testimony established that Terri was very young and very healthy when tragedy struck. She had not prepared a will, much less a living will. She had been raised in the Catholic faith, but did not regularly attend mass or have a religious advisor who could assist the court in weighing her religious attitudes about life-support methods. Her statements to her friends and family about the dying process were few and they were oral. Nevertheless, those statements, along with other evidence about Terri, gave the trial court a sufficient basis to make this decision for her.

The question for the Court was whether Terri, not after a few weeks in a coma, but after ten years in a persistent vegetative state that has robbed her of most of her cerebrum and all but the most instinctive of neurological functions, with no hope of a medical cure but with sufficient money and strength of body to live indefinitely, would choose to continue the constant nursing care and the supporting tubes in hopes that a miracle would somehow recreate her missing brain tissue, or whether she would wish to permit a natural death process to take its course and for her family members and loved ones to be free to continue their lives. The Court found there was clear and convincing evidence that Terri would not want to live in a persistent vegetative state and affirmed the trial court’s decision to permit discontinuation of life support. Terri’s feeding tube was removed on April 24, 2001.

That, however, did not end the Schiavo case. The Schindlers filed a new case arguing that Michael sought to terminate life support because he would inherit her malpractice settlement under Florida’s intestacy law. They also cited “new evidence” of Terri’s wishes. The feeding tube was reinserted on April 26, 2001. The litigation continued with a second, third and fourth trip to the Florida Court of Appeals. On the third trip to the Court of Appeals, the court remanded the case to the trial court for a hearing regarding a new treatment would improve Terri’s condition. The court found no evidence that it would. On the fourth trip to the Court of Appeals, the court offered its empathy to the Schindlers. However, the court held “this case is not about the aspirations that loving parents have for their children. It is about Theresa Schiavo’s right to make her own decision, independent of her parents and independent of her husband.” The court then affirmed the trial court’s decision to discontinue life support. Terri’s feeding tube and hydration tube were then removed on October 15, 2003.

On October 21, 2003, the Florida legislature enacted “Terri’s Law” and Florida’s governor issued an executive order requiring that the feeding tube and hydration tube be reinserted. Michael filed an action for declaratory judgment, seeking a ruling that the law was unconstitutional. When that case reached the Florida Supreme Court, the court held that Terri’s Law was unconstitutional because it purported to allow the legislature and governor to overrule a final judicial order.

See also Patient’s Right to Direct Health Decisions Affirmed

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