The role of the courts in terminating life-sustaining medical treatment.

• Author: Leibson, Charles M.

In this article I address the issues generated by a mother's decision to withdraw further life-sustaining medical treatment from her daughter, who languished for nine years in a nursing home in a persistent vegetative state. In 1983 the daughter, Martha Sue DeGrella (Sue), then age thirty-five, was severely beaten, sustaining an acute subdural hematoma causing severe brain damage, for which medical treatment was of no benefit. She was transferred to a nursing home, where she sustained life through a surgically implanted tube that supplied artificial nutrition and hydration. The doctors agreed that further medical treatment was of no possible therapeutic value, but the nursing home advised the family that it would require court authorization before permitting or participating in the withdrawal of treatment.

The case involved is DeGrella v. Elston.(1) The trial court authorized the mother to direct medical personnel to discontinue life-sustaining medical treatment. This order was affirmed in a divided opinion (5/2). I authored the majority opinion.

Many of the issues are interdependent, and I do not imply otherwise by covering them separately in this article. Some are simply sub-issues, and all lead to the ultimate questions, which are (1) is it appropriate for a court to entertain a case of this nature and (2) if so, what is the appropriate role for the court in the ultimate decision?

Sue's mother applied to be, and was appointed, her legal guardian in October 1991, and in February 1992 she filed a petition seeking a declaratory judgment (1) acknowledging Sue's persistent vegetative state and (2) asking the court to declare that she, as Sue's mother, "is permitted by Kentucky law to substitute her judgment for that of her daughter" and direct discontinuation of further treatment.

The immediate cause of the suit was the nursing home's refusal to permit Sue's mother, as legal guardian, to direct the termination of treatment. The trial court appointed a guardian ad litem (GAL) to advocate Sue's interest, and the GAL denied anyone had a legal right to an order of this nature.

A trial took place over a two-day period in July 1992. Sue's mother presented extensive evidence, which was appropriately tested by cross-examination from the GAL. The court heard testimony from three doctors and the nursing home administrator, three of Sue's siblings and her mother, her ex-husband, and two theologians.

The uncontradicted medical testimony established that Sue reacted only at a reflexive level, meaning she would withdraw from a painful stimulus, but she did not experience pain by cognitive thought. Ceasing nutrition and hydration would cause no pain, although, of course, neither would continuing the treatment. With continued nutrition and hydration she might live many years, and with withdrawal all signs of life would expire in a few days.

While competent, Sue had expressed explicitly and frequently her desire that her life not be maintained by extraordinary means. One of Sue's brothers testified that he and Sue frequently had discussions about incurable disease and imminent death or suffering. in one specific conversation after they had seen the movie Brian's Song, Sue said she would not want to go through treatment as the character in the movie did and expressed her belief that, when no recovery was possible and the end inevitable, a continuation of treatment would be senseless and would cause pain for herself and her family. She said it would be humiliating to become a vegetable, and she could not understand why anyone would desire to be treated or accept treatment under such circumstances. She also said she would never choose to have that indignity forced upon her.

Another brother testified that, in conversations precipitated by their niece's dying of a brain tumor at age eight, he and Sue discussed how neither of them wanted to be kept alive by extraordinary means--either mechanical or other artificial means. During discussions regarding a paper on euthanasia that Sue helped him write, she was very negative about being kept alive by a machine.

Sue's ex-husband testified that he and Sue had been very interested in Karen Ann Quinlan's case. Sue had told him she did not want to be connected to machines or have medical technology used to keep her alive in similar circumstances. She had him promise that, if she were ever in a position to require life-sustaining equipment like Karen Ann Quinlan, he would not allow the doctors to use such devices. Following a car accident in 1977, Sue received emergency treatment, after which she remained in a coma for about a week, and then had an extended period of recuperation. Although her then-husband had not felt her condition as a result of the car accident fell into the same category as Karen Ann Quinlan's condition, after recovery Sue became very angry with him for "breaking his promise" in allowing a defribillator to be used to restore her heartbeat and a respirator to continue her breathing.

The trial court was satisfied the evidence was "clear and convincing" as to both the nature of Sue's condition and the feelings she had expressed as a competent adult suggesting she would wish to die if reduced to the present circumstances and would so choose if she could speak for herself, The trial court entered the order Sue's mother requested, and the GAL appealed.

After we decided the case on appeal, the nursing home obeyed the order to disconnect the tube supplying nutrition and hydration, but elected to attempt to provide food and water by normal means. Sue died a few days later from a type of pneumonia caused by inhalation of food and water. It took eighteen months for the legal process to run its course.

The question squarely presented to the Supreme Court on appeal was this: Can the trial court lawfully sanction the right of the legal guardian and next of kin of an incompetent person in a persistent vegetative state to terminate artificial nutrition and hydration?(2) The questions we encountered and decided along the way to affirming the trial court were as follows.

The Right to Choose to Forgo Life-sustaining Medical Treatment

It is a fundamental principle of our society, memorialized in our Declaration of independence, that among our "unalienable rights" is the right to "life." In like manner, the "right of enjoying and defending" life is among the first principles protected by the Kentucky state constitution.(3) But the right to choose to die is not so apparent. Attempted suicide was prohibited at common law, and while our state no longer specifically prohibits suicide in the Kentucky Penal Code, a vestige of this policy remains in the code's pronouncement that the "use of physical force ... is justifiable" when "immediately necessary to prevent" another "person from committing suicide or inflicting serious physical injury upon himself."(4)

Nevertheless, suicide (intentionally destroying one's own life), like mercy killing and euthanasia, was not the issue here. The issue was the right to forgo medical treatment, either by refusal or withdrawal, a common-law principle of autonomy and personal privacy which the United States Supreme Court recognized as long ago as 1891: "No right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of other, unless by clear and unquestionable authority of law."(5)

Judge Benjamin Cardozo, during his tenure on the high court of New York, explained this right to refuse medical treatment as follows: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent commits an assault, for which he is liable in damages.(6) Thus our court started its reasoning process by recognizing the common law right of a competent person to forgo medical treatment, either by refusal or withdrawal."(7)

The Right to Refuse Medical Treatment on Behalf of an Incompetent Person

Two...