When love and abuse are not mutually exclusive: the need for government intervention.

• Author: Obernberger, Scott

All of us remember times in our lives when we were convinced, beyond a shadow of a doubt, that our parents did not have our best interests at heart. Whether their obvious dislike for us was manifested by their insistence on our doing our homework, taking "responsibility" for our actions, or, as my parents did to me, forcing us to eat squash casserole, it usually became apparent that they did not do what they did for the purpose of torturing us (with the exception of the squash casserole). Rather than methods of well-deserved vengeance, the actions of parents, no matter how painful they may appear to be, are generally appropriate, well measured, and entered into with a firm resolve to help their children become better people.

Where the crisis develops is when parents act in a manner that does not benefit their children--where the end result of the act is a form of abuse, emotional, mental, or physical. Certain types of abuse are obvious--e.g., the child who is scalded with boiling water for failing to "behave"; the little girl who is constantly reminded by her parents that she is "dumb," "won't amount to anything," and "should have never been born."

Other types of abuse are more difficult to distinguish. Sometimes what would in normal circumstances be abuse is not abuse at all. For example, many people view death as preferable to a "vegetative existence," one where the individual is unable to interact with the world around him due to a lack of consciousness. These people believe that the withholding of medical care under these circumstances is not neglect or abuse, but the most loving thing that can be done.

There is generally very little controversy when an adult makes this decision for himself before being rendered unconscious or incompetent. However, when others make this decision for an incompetent individual without any knowledge or understanding of what she would want, concern arises over whether the proper decision is being made. Similarly, when parents make decisions regarding medical treatment for a child which will result in that child's death, a question arises of whether the parents are acting in their child's best interests or if the action constitutes abuse. This area, an area where the line between love and abuse, best interests and neglect, becomes dangerously blurred, is what will be discussed here. Inherent to this discussion are questions regarding fitness, decisionmaking, and authority. What does it take to be "fit" to decide these issues? Is love enough? How are these decisions to be made, and who should be consulted when making them? Finally, who should be able to make these decisions?

This article attempts to answer these questions primarily in the context alluded to above--the situation wherein a parent is left with two choices for the child--to treat or not to treat. In order to reach this analysis, however, the basics of medical decisionmaking, autonomy, and consent must be addressed.

Informed Consent and the Basics of Medical Decisionmaking

The doctrine of informed consent, a long-held precept of the law grounded in the belief that competent adults have the right to make medical decisions for themselves, requires a doctor to explain to a patient all of his options and the possible repercussions of the option the patient chooses.(1) One of the first expressions of this sentiment came more than one hundred years ago in Union Pacific Railway Co. v. Botsford. In Botsford, the U.S. Supreme Court declared that no one could be compelled to undergo an invasive medical procedure without his or her prior consent. The Court declared: "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 others, unless by clear and unquestionable authority of law."(2)

Twenty years after Botsford, Justice Cardozo addressed this issue while he sat on the New York Court of Appeals in Schloendorff v. Society of New York Hospital: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body."(3) Justice Cardozo went on to declare that "a surgeon who performs an operation without his patient's consent commits an assault."(4) It is in these sentiments that the doctrine of informed consent was, and continues to be, grounded. In fact, as recently as 1990, the Supreme Court retraced the origins of both the right of individuals to make their own medical decisions and the right of informed consent.(5)

Despite the frequent references to competency, it wasn't until relatively recent times that the courts were forced to address this issue in the context of medical decisionmaking. That which Justice Cardozo only alluded to in Schloendorff--the linking of the right to make medical decisions for oneself to one's competency--did not rise to the forefront until the mid-1970s.

The reason for this rests primarily on the fact that until recently the survival rate for major trauma and disease was relatively low. As a result of numerous medical advances during the 1970s and 1980s, individuals could be, for the first time, kept alive indefinitely in situations where, twenty short years ago, they would certainly have perished within hours or at best months. This prolongation of life has been viewed as both a blessing and a curse. While the quality and duration of life have improved significantly for most, these advances have rendered it possible to sustain some individuals in a persistent vegetative state for, in some cases, years.(6) As Alan Meisel states in his treatise entitled "The Right to Die":

These patients present great management and emotional difficulties for

their caregivers and families. Although not dead by either the

traditional cardiopulmonary or the newer brain function criteria,

neither are they in contact with their surroundings. It is even arguable

that they are not `terminally ill,' though they are certainly `incurably ill.'

With adequate medical care they could remain in this state

indefinitely.(7)

How should the law deal with these situations? Enter the case of Karen Ann Quinlan.

In 1976, Karen Quinlan was a twenty-one-year-old who, as a result of a temporary cessation of her ability to breathe, was left in a persistent vegetative state.(8) Karen's father sought appointment as her legal guardian for the purpose of making medical decisions for her, including the right to have her removed from her respirator.(9) In analyzing the issues, the court determined first that Karen could, if she were competent, refuse the treatment that she was receiving, provided that the state lacked a compelling interest in her continued treatment.(10) By finding that no such interest existed in this case, the court vindicated the right of an adult to make her own medical decisions.(11)

Though the court did not elaborate extensively on what constituted a "compelling state interest," it did state, in dicta, that the state's interest included the preservation of human life and the right of a physician to administer medical treatment.(12) The court provided a formula to be applied to determine whether the state's interest overwhelmed the rights of an individual--"[t]he State's interest contra weakens and the individual's right to privacy grows as the degree of bodily invasion increases and the prognosis dims."(13) Later cases further explained which interests of the state could become compelling enough to overwhelm the individual's right to privacy.(14) There are four commonly identified state interests that may limit a person's right to refuse medical treatment. These include (1) preserving life, (2) preventing suicide, (3) safeguarding the integrity of the medical profession, and (4) protecting innocent third parties.(15) The most frequently used and the strongest of the above four is the state's interest in preserving life.(16) Whether any of these four interests of the state becomes "compelling" relies heavily on the prognosis of the patient.(17) As a result, the state will generally intervene only in cases where the prognosis is promising and the degree of bodily invasion is minimal--for example, by requiring an individual with minor children to undergo a blood transfusion.(18)

After determining that where the state lacked a compelling reason to require treatment, a competent adult could refuse to undergo it, the court in Quinlan addressed a second, more troubling issue--whether someone else could exercise Karen's right to refuse medical treatment on her behalf. In answering this question affirmatively, the court created what has since become known as the substituted judgment standard. Karen's right to terminate medical treatment could be asserted for her, but the person making the decision was required by the court to base the decision on "whether she [Karen] would exercise it in these circumstances."(19) The substituted judgment standard requires, therefore, knowledge on the part of the decisionmaker of what the now-incompetent person would want done, given the situation.

Though this new standard could be applied to most cases, it failed to address what should be done when it was impossible to ascertain what course of treatment the patient would choose due either to that patient's failure to indicate what he would want done or that patient's inability to indicate what he would want done due to his never having attained legal capacity.

In response to this shortcoming, courts developed a second standard, the best interests standard, to be applied to persons who never attained legal capacity.(20) In Superintendent of Belchertown State School v. Saikewicz, for example, the Supreme Court of Massachusetts wrestled with the question of whether a mentally retarded man should be required to undergo chemotherapy for leukemia when the chance of a cure was slim.(21) In analyzing the facts of the case, the court declared that there...