The Importance of Living Wills

Article summary. The recent legal battles over the removal of feeding and hydration tubes from Florida resident Terri Schiavo focused public attention on the importance of expressing one’s desires regarding the administration of life-prolonging procedures in a legally effective manner. Terri Schiavo lingered in a persistent vegetative state for 15 years because she failed to clearly express her desires regarding the use of life-prolonging procedures. Obviously, people will come to different conclusions regarding the use of such procedures. But, it must be recognized that most people die in hospitals or nursing homes, in a mentally incapacitated condition, without ever having expressed their desires regarding the use of life-prolonging procedures. This failure imposes on family members the agonizing decision of whether their loved one would have wanted such procedures applied or removed. Regardless of one’s views on the use of such procedures, the lesson of the Schiavo case is the importance of expressing these views in a legally effective manner, such as a living will. Church leaders can be of immense help to their congregation in providing leadership and counsel on this vital issue.

A few months ago the nation was gripped by the case of Terri Schiavo, the brain-damaged Florida woman who was allowed to die when feeding and hydration tubes were ordered removed by a local court. Terri had suffered a cardiac arrest at age 27 in 1990 as a result of a potassium imbalance. Since 1990 she had lived in nursing homes with constant care. She was fed and hydrated with tubes. She experienced numerous health problems over the years, but none was life threatening. She existed in a permanent or persistent vegetative state. Such a condition is not a coma. She was not “asleep.” She had cycles of apparent wakefulness and apparent sleep but with no cognition or awareness. When she breathed she often made moaning sounds. She suffered severe contractures of her hands, elbows, knees, and feet.

Over the last ten years of her life, Terri’s brain deteriorated because of the lack of oxygen she suffered at the time of the heart attack. By mid 1996, the CAT scans of her brain showed a severely abnormal structure. At that point, much of her cerebral cortex was simply gone and had been replaced by cerebral spinal fluid. Medicine cannot cure this condition.

In the early 1990s, Terri’s husband Michael won a sizable medical malpractice judgment for his wife. This judgment was sufficient to care for Terri for many years. In 2000, after his wife had been in a vegetative state for 10 years, Michael asked a court to authorize the removal of life support systems. Terri’s parents opposed this action. The court granted Michael’s request, and authorized the removal of all life-support systems. It concluded,

Two days after the feeding and hydration tubes were removed, a trial judge ordered them reinserted when a new witness surfaced. That led to five more years of legal battles before the Florida legislature and courts, federal courts, and Congress. With all available remedies exhausted, a court ordered the feeding and hydration tubes removed in March of 2005, and Terri died several days later.

Terri Schiavo’s life was allowed to continue for 15 years in a persistent vegetative state, her cerebral cortex having been replaced by spinal fluid and with no hope for recovery, because she had failed to leave a living will or other unequivocal evidence of her desire to die or continue living in such a condition.

While many physicians agree that Terri Schiavo was in a persistent vegetative state, some have suggested that she may have been in a “minimally conscious state” instead. The differences between the two conditions are subtle and in some cases it is difficult to distinguish between them. The essential distinction is conscious awareness of one’s surroundings. Persons in a persistent vegetative state have no conscious awareness of their surroundings even when they are “awake” and appear to be “looking” at persons or objects. On the other hand, persons in a “minimally conscious state” exhibit occasional and repeatable indications of consciousness and volitional behavior, such as the ability to recognize loved ones or follow simple instructions (close your eyes, move your hand, look at a lamp, etc.). Persons who are in a persistent vegetative state may appear to exhibit similar behavior, but their actions are random and not repeatable.

In 1990 the United States Supreme Court addressed issues remarkably similar to those raised by the Terri Schiavo case. In Cruzan v. Missouri Department of Health, 58 U.S.L.W. 4916 (1990) the Court ruled that life-prolonging procedures can be discontinued if a person has left “clear and convincing evidence,” such as a living will, that such procedures be removed under specified conditions.

facts

Nancy Cruzan lost control of her car while traveling down a rural road in Missouri in 1983. Her vehicle overturned, and Cruzan was discovered laying face down in a ditch without detectable respiratory or cardiac function. Paramedics were able to restore her breathing and heartbeat at the accident site, and she was transported to a hospital in an unconscious state. A neurosurgeon diagnosed her as having sustained spastic quadriplegia, and permanent brain damage due to loss of oxygen. She remained in a “persistent vegetative state” for seven years. While her breathing and heartbeat were normal and not artificially maintained, she was oblivious to her environment; some of her brain had deteriorated and been replaced with spinal fluid; her arms and legs were severely contracted with irreversible muscle and tendon damage; and she had no ability to swallow or ingest food or liquid. Nevertheless, her doctors testified that she could live for another 30 years if she continued to be fed artificially.

After it became apparent that Nancy had virtually no chance of regaining her mental faculties, her parents asked hospital employees to terminate the artificial nutrition procedures, knowing that this would end her life. Nancy’s mother testified that Nancy “would not want to be like she is now. I know, as her mother.” Nancy’s sister testified that Nancy “would be horrified at the state she is in,” and would want “to take the burden away from her family.” A close friend testified that while she was living with Nancy, she learned that a relative had died suddenly, and that had she survived she would have been in a vegetative condition. Nancy then stated to her friend that “she hoped that all the people in her family knew that she wouldn’t want to live as a vegetable since she knew it was usually up to the family whether you lived that way or not.”

Despite this evidence, the hospital refused to terminate the artificial feeding without a court order. The parents then sought and received an order from a Missouri trial court. The state supreme court reversed the trial court’s order, concluding that family members cannot decide to terminate another’s life “in the absence of the formalities required under Missouri’s living will statute or the clear and convincing … evidence absent here.” The case was appealed to the United States Supreme Court.

the Court’s ruling

By a majority of 5-4, the Supreme Court agreed with the Missouri Supreme Court that the Cruzan family could not dictate the termination of Nancy’s life since there was not “clear and convincing evidence” (such as a “living will”) indicating that Nancy would have wanted her life terminated. The Court acknowledged that “this is the first case in which we have been squarely presented with the issue of whether the United States Constitution grants what is in common parlance referred to as a ‘right to die.'” More specifically, the issue was whether Missouri’s decision to deny family members the right to terminate the artificial feeding and thereby the life of comatose loved ones without “clear and convincing evidence” of the victim’s desire to die violated any right guaranteed by the Constitution. The Court concluded that it did not.

The Court concluded by observing that “close family members may have a strong feeling—a feeling not entirely disinterested, either—that they do not wish to witness the continuation of the life of a loved one which they regard as hopeless, meaningless, and even degrading. But there is no automatic assurance that the view of close family members will necessarily be the same as the patient’s would have been had she been confronted with the prospect of her situation while competent.”

The four dissenting justices felt that the wishes of Nancy’s closest family members should have been honored. They also cited evidence that the vast majority of Americans (85%) would prefer that their lives not be prolonged through artificial means, but that very few (less than 10%) ever take the time to draft “living wills” or otherwise communicate their wishes through “clear and convincing evidence.” The dissenting justices were concerned that the wishes of many Americans would be frustrated and ignored by the Court’s decision.

In explaining why so few people ever provide written instructions regarding their medical treatment in the event of a vegetative state, the dissenters observed:

Shortly after the Supreme Court’s decision, a local Missouri court conducted another hearing and ordered Nancy’s feeding and hydration tubes removed after hearing new witnesses who provided “clear and convincing evidence” that Nancy Cruzan would not have wanted to continue living in her condition. She died 12 days later, on December 26, 1990, the same year that Terri Schiavo suffered the heart attack that left her in a persistent vegetative state.

Much interesting data was shared in the majority and dissenting opinions. Consider the following:

(1) As noted before, “80% of all deaths in the United States now occur in hospitals and long-term care institutions, such as nursing homes,” and “80% of all Americans who die in hospitals are likely to meet their end in a sedated or comatose state; betubed nasally, abdominally and intravenously; and far more like manipulated objects than like moral subjects.” One Justice noted that “of the approximately two million people who die each year, 80% die in hospitals and long-term care institutions, and perhaps 70% of these after a decision to forgo life-sustaining treatment has been made. Nearly every death involves a decision whether to undertake some medical procedure that could prolong the process of dying.”

(2) One of the dissenting justices noted that “[o]ut of the 100,000 patients who, like Nancy, have fallen into persistent vegetative states in the past 20 years due to loss of oxygen to the brain, there have been only three even partial recoveries documented in the medical literature. The longest any person has ever been in a persistent vegetative state and recovered was 22 months.”

(3) A 1988 poll revealed that 85% of all Americans “would not want to have their own lives maintained with artificial nutrition and hydration if they became permanently unconscious.”

(4) Since 1976, “40 states have enacted natural death acts, expressly providing for self-determination” in some cases, and 13 states have enacted laws authorizing the appointment of “proxies” for making health care decisions.

(5) “As many as 10,000 patients are being maintained in persistent vegetative states in the United States, and the number is expected to increase significantly in the near future. Medical technology, developed over the past 20 or so years, is often capable of resuscitating people after they have stopped breathing or their hearts have stopped beating. Some of those people are brought fully back to life. Two decades ago, those who … could not swallow and digest food, died. Intravenous solutions could not provide sufficient calories to maintain people for more than a short time. Today, various forms of artificial feeding have been developed that are able to keep people metabolically alive for years, even decades.” (6) “Until the latter part of this century … the vast majority of persons died at home …. By 1949, institutions were the sites of 50% of all deaths; by 1958, the figure was 61%; and by 1977, over 70%. Perhaps 80% of all deaths now occur in hospitals and long-term care institutions, such as nursing homes.”

significance of the ruling

The Supreme Court’s decision in the Cruzan case acknowledged, for the first time, that competent adults have a legal right to discontinue medical treatment that is artificially prolonging their lives. However, when a person becomes incompetent, a state may reject the decision of family members to terminate life-prolonging treatment absent “clear and convincing evidence” that the incompetent person would have wanted the treatment terminated. “Clear and convincing evidence” would include a properly drafted “living will,” or other reliable evidence of the incompetent person’s desires.

Relevance to church leaders

Public opinion polls indicate that the vast majority of Americans would not want their lives prolonged artificially in a persistent vegetative state or coma. But, very few have executed “living wills” or left other reliable written evidence of their desires that could guide family members in making the difficult decision that haunted Terri’s husband and parents.

A “living will” is a legal document that permits a competent adult to request that his or her life not be prolonged by artificial means under specified circumstances. Such documents are recognized by law in most states. In many states, living wills are quite restrictive—authorizing the termination of artificial life-prolonging procedures only in the event that the individual is mentally incapacitated and facing imminent death from a terminal disease from which there is no reasonable hope of recovery. Other states are more liberal and allow for the termination of life-support for persons, such as Terri Schiavo, who are not facing imminent death.

Many state laws specify the form and content of living wills. It is essential that persons who do not want their lives prolonged by artificial means review the living will prescribed by state law, and determine whether or not it accurately reflects their desires. The assistance of an attorney is recommended in preparing any legal document, but particularly one that is not in the precise format prescribed by state law.

No one, other than medical personnel themselves, are more familiar with deathbed vigils and comatose and incompetent patients than clergy. They often see firsthand the anguish experienced by family members in making decisions affecting the life of a loved one. How often such family members long for the comfort and guidance of clear, written instructions from the patient. But such comfort is seldom available, since so few persons take the time to express their desires in an effective document. Clergy can be instrumental in preventing this heartache. They are respected by their parishioners, and their counsel is valued perhaps more than that of any other individual. Regardless of a person’s desires—whether or not to artificially prolong permanently unconscious life—clergy should encourage church members to put their desires in a legally recognized form (a living will or otherwise), being as specific as possible. Not only will this provide assurance and comfort to family members making the critical decision whether or not to artificially prolong life, but it also will ensure that the state itself will honor those wishes.

The Terri Schiavo illustrates the need for every competent adult to execute a living will expressing his or her wishes regarding the use of life-prolonging procedures. Doing so will relieve family members of having to make this critical decision without any actual knowledge of the person’s wishes. The problem in the Schiavo case was that Terri never expressed her wishes regarding life-prolonging procedures in such a document. Nearly ten years after she slipped into a persistent vegetative state her husband “recalled” a conversation in which Terri indicated she would not want life-prolonging procedures administered. It was this belated recollection that convinced the courts to withdraw the feeding and hydration tubes despite the plea by Terri’s parents that they would care for her themselves if she were allowed to live. This tragedy could have been avoided had Terri executed a living will.