Life, Quality of: III. Quality of Life in Legal Perspective

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III. QUALITY OF LIFE IN LEGAL PERSPECTIVE

Law has addressed quality-of-life issues primarily in the context of the withholding or withdrawal of life-sustaining medical intervention. The legal dilemma arose when medical technology became capable of keeping alive persons with gravely debilitating and potentially fatal afflictions long beyond the point that most people would wish to live. The questions became: Under what circumstances is the removal of life support lawful? Can decisions to remove life support be grounded on quality-of-life factors?

Many sources contend that deteriorated quality of life—in the sense of a patient's mental and physical debilitation—is a natural and inevitable element in shaping the bounds of medical intervention in the dying process. Most people, faced with a prolonged and debilitated dying process for themselves or a loved one, prefer that life support be withdrawn at some stage of deterioration. Decisions about life support for formerly vital people are therefore often grounded on factors such as extreme mental dysfunction, immobility, and helplessness.

The opponents of using quality-of-life factors in ending people's lives cite numerous concerns. The most common is that judicial or legislative sanctioning of quality-of-life considerations will undermine the traditional focus of both criminal and tort law on preserving and protecting all human life, regardless of quality. One asserted hazard is that quality of life will be measured in terms of utilitarian elements such as cost of care, social productiveness of the patient, and burdens imposed upon the people caring for the patient. Such a utilitarian calculus would place the lives of the weak and vulnerable—the very young, the developmentally disabled, and the elderly—at particular risk (Destro).

Even if quality-of-life considerations are confined to factors that, from the patient's own perspective, make existence intolerable, some observers find moral hazards. If dismal quality of life focuses on physical and mental dysfunction, a concern is that the lives of disabled persons generally might be devalued and their morale eroded. Surrogate decision makers for incompetent patients might also be insensitive to the true quality of life as a disabled person, so that vulnerable populations would be endangered by arbitrary determinations. Some sanctity-of-life proponents prefer to protect and support all human existence even in the face of fatal afflictions and severe degeneration.

This tension between sanctity of life and quality of life has surfaced in a number of legal settings. Each of the following sections discusses the resolution of that tension in a particular legal context.

Patients Competent to Make Their Own Decisions

Current law, rooted in concepts of self-determination and bodily integrity, establishes that competent patients are entitled to reject life-sustaining medical intervention. The relevant cases recognize that patients can and often do base their rejection of life-sustaining treatment on quality-of-life factors. That fact emerges most clearly in cases involving severely disabled persons who reject treatment capable of preserving their existences for many years.

The typical situation involves a quadriplegic person dependent on mechanical life support who finds the debilitated existence so painful or demeaning that he or she orders the cessation of life-sustaining measures (McKay v. Bergstedt, 1990; State v. McAfee, 1989; Bouvia v. Superior Court, 1986). Courts uniformly uphold the patient's decision. These courts recognize that patient self-determination encompasses personal values and preferences about whether a prospective medical state is intolerably painful or degrading— that is, constitutes an unacceptable quality of life. A California court explained:

Since death is the natural conclusion of all life, the precise moment may be less critical than the quality of time preceding it. Especially when the prognosis for full recovery from serious illness or incapacity is dim, the relative balance of benefit and burden must lie within the patient's exclusive estimation: "That personal weighing of values is the essence of self-determination." (Thor v. Superior Court, 1993, p. 384)

These same courts reject any notion that judicial acceptance of debilitated patients' fatal decisions weakens respect for life generally or devalues the lives of the disabled. The judges view their decisions as upholding individual autonomy and thereby promoting a critical element of human dignity, rather than as denigrating the sanctity of life.

Incompetent Patients

Many medical patients lack the capacity to make their own decisions about life-sustaining treatment. A surrogate must then act on the patient's behalf. Some commentators oppose the use of quality of life—determining whether a patient's life is "worth" preserving—in decision making for incompetent patients (see Wicclair, pp. 56–60). Again, the concerns include use of utilitarian factors such as economic costs and social unproductivity of the patient. Beyond that, sanctity-of-life proponents fear arbitrary decisions by surrogates who are insensitive to the value of disabled persons' lives or motivated by self-interest.

In some instances, the now-incompetent patient has exercised personal autonomy by previously, when competent, issuing written or oral instructions about terminal medical care. Both courts and legislatures accept in principle this prospective autonomy (though some state legislatures have confined their endorsement of advance medical directives to situations in which the patient is in a "terminal" state). Through advance instructions, people can seek to discontinue medical intervention at a point when their existence becomes intolerable according to their own previously expressed definitions of quality of life.

The situation is more complicated when a nowincompetent patient facing a potentially fatal affliction has never clearly articulated personal values and preferences about life-sustaining medical intervention (Cantor, 2001). Courts in a few states disallow any terminal decision on behalf of an incompetent patient who has never issued advance instructions that clearly and convincingly express the patient's desire to forgo life support in the medical circumstances at hand (In re Westchester County Medical Center, 1988; Cruzan v. Harmon, 1990; Mack v. Mack, 1993; DeGrella v. Elston, 1993). A few state courts insist on clear and convincing evidence of the now-incompetent patient's prior wishes only when the patient is still conscious (Spahn v. Eisenberg, 1997; In re Martin, 1995; Matter of Wendland, 2001). These courts all express grave apprehension about allowing surrogates to determine that another person's life is not worth preserving. To foreclose end-of-life decisions grounded on the surrogate's values rather than the patient's, they insist either upon the patient's personal prior assessment of an intolerable quality of life or upon legislative guidance concerning what kinds of deteriorated existence are so undignified as not to be worth preserving.

Insistence upon clear-cut prior instructions as a prerequisite for withdrawal of life support from an incompetent patient disregards certain interests of people who have simply neglected to address the issue of terminal care (as well as those of people who have never been competent). The hazard is that such persons, once afflicted with debilitating medical conditions, will be indefinitely maintained in a status that the patients themselves would deem intolerably painful or demeaning, were they able to express their wishes. In the words of one judge, invariable preservation of life without regard to the incompetent patient's prospective deteriorated status "transforms human beings into unwilling prisoners of medical technology" (In re Guardianship of L.W., 1992, p. 74). To avoid this unfortunate consequence, most courts that have spoken to the issue allow some surrogate decisions to reject life support even in the absence of prior instructions.

Courts subscribing to this position usually articulate a best-interests-of-the-patient standard to guide the surrogate decision maker (In re Conroy, 1985; In re Grant, 1987). This normally means that in order to justify removal of life support, the "burdens" to the patient must clearly outweigh the "benefits," with irremediable suffering being the primary burden and pleasure being the primary benefit. The relevant cases carefully exclude "social utility" or "personal worth" as factors in the best interests calculus (Conroy, pp. 1232–1233). However, the role of quality of life (in the sense of a severely deteriorated and undignified patient status) is uncertain. Quality of life or dignity of the patient is often mentioned as an element within the best-interests formula (Rasmussen v. Fleming, 1987; Grant, 1987). Indeed, in 1983 the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research listed "quality as well as the extent of life sustained" as a major component within the best-interests standard. But in application in the reported cases, quality of life has been a determinative factor primarily in the context of permanently unconscious patients.

A few commentators have suggested that the concept of "medically inappropriate" or "futile" treatment ought to fix the bounds of life support for gravely debilitated patients(e.g., Jecker). Futile treatment, in the sense of medical intervention that cannot achieve a particular physiological goal, may be a meaningful and useful concept. But when medical intervention can extend life, albeit debilitated life, the futility concept is much less helpful. A determination that life-sustaining medical intervention is futile really represents a judgment that the quality of life is so dismal that life support ought to be withdrawn as inconsistent with the best interests of the incompetent patient or as contrary to the patient's likely preferences. That determination may be appropriate for surrogate decision makers (in conjunction with medical staff), but it cannot be the province of medical personnel alone (Cranford and Gostin; Veatch and Spicer, 1992).

Patients in a Permanent Vegetative State

A permanently unconscious patient cannot experience suffering or sense the bodily invasions that normally constitute "burdens" to be assessed under a best-interests-of-the-patient standard. At the same time, permanent unconsciousness represents a dehumanizing condition, with the patient indefinitely devoid of sensation, emotion, or human interaction. The vast majority of people contemplating such a status deem it so degrading that they would not want to be medically sustained in that insensate condition. (Some commentators even argue that the legal definition of death should be changed to include permanently vegetative beings, a suggestion that has not yet been adopted [Schrode].)

The clear majority of state court decisions regarding permanently unconscious patients have permitted surrogate decision makers to end life support. Still undecided is the precise legal rationale for this result and whether this line of cases represents use of quality of life as a determinative factor in surrogate decision making.

In some instances, the courts upholding removal of life support rely on prior expressions (whether written or oral) by the now unconscious patient. Those courts simply respect the patient's self-determination and accept the patient's own declaration of permanent unconsciousness as an unacceptable quality of life. These cases sometimes disclaim any surrogate's prerogative to define another person's quality of life as unacceptable (e.g., DeGrella, 1993).

A number of cases, however, uphold removal of life support from a permanently unconscious patient even in the absence of prior expressions. Some of these cases include never-competent patients, such as infants. None of the cases relies on the burdens placed upon society or surrounding family by having to care for the insensate patient. Rather, the judges articulate diverse rationales. Some courts use the substituted judgment rationale and accept that the patient, if competent, would have wanted removal of life support (In re Fiori, 1995; Matter of Tavel, 1995; In re Guardianship of Jane Doe, 1992). Other courts purport to apply a best-interests standard but rely on the patient's dismal existence without cognitive function as warranting removal of life support (In re Guardianship of Crum, 1992).

Most courts confronting the fate of permanently unconscious patients recognize, either explicitly or implicitly, that the patient's status is so dehumanizing that it represents what most people would regard as an unacceptable quality of life. These courts sometimes demand that the surrogate decision maker not rely on his or her personal views about the value of an unconscious person's life (Guardianship of L.W., 1992). But they do allow for surrogates' reliance on the common judgment that most people wish to avoid a permanently unconscious state (because it lacks dignity and is devoid of value from the perspective of the unconscious patient), as long as the patient's ostensible preferences did not deviate from that norm (Guardianship of Jane Doe, 1992).

By contrast, courts in a few jurisdictions have refused to endorse removal of life support from a permanently unconscious patient in the absence of clear-cut prior expressions from that patient (Cruzan, 1990; Mack, 1993; DeGrella, 1993). These courts see the removal decision as a quality-of-life determination that should be made, if at all, pursuant to legislative directions. Some judges also fear that permission to remove life-sustaining medical intervention from the permanently unconscious would ultimately endanger vulnerable populations, such as the severely retarded (Mack, 1993; Guardianship of Jane Doe, 1992, dissent).

Infants and Young Children

Some congenital anomalies entail a foreshortened lifespan, as well as neurological impairment, physical incapacity, repeated bodily invasion, and suffering so severe that the affected infant is arguably better off dead than alive. As patient autonomy cannot function in this setting, the question becomes whether parents, in conjunction with medical sources, can withhold life support on the basis that the child's life would be so burdened or devoid of personal value that death is preferable. Some commentators oppose this surrogate option, fearing that decisions would be based on prejudice or ignorance about life as a disabled person or concern for parental burdens, rather than burdens upon the child (Field).

Only a small number of cases have been litigated, and the legal picture concerning removal of infants' life support is murky. A few cases use a best-interests standard and rely on likely physical suffering to uphold parental decisions involving withholding of life-sustaining intervention (In re C.A., 1993; Newmark v. Williams, 1991). A few cases purport to apply a substituted judgment rationale (reasoning that the child, if competent, would choose death) in order to uphold removal of life support from a permanently vegetative child (In re L.H.R., 1984; In re Guardianship of Barry, 1984). In a 2001 case, a court declared that Texas law prohibits any parental effort to remove life support from a newborn (Miller v. Hospital Corporation of America).

The best-interests approach seems most plausible, allowing consideration of irremediable suffering and continuous bodily intrusions (Weir). An unresolved issue is the extent to which a dismal quality of life—in the sense of total helplessness and minimal potential for human relationships— can be used legitimately in this best-interests calculus. As a practical matter, it is hard for decision makers to exclude extreme debilitation in applying a best-interests standard. Extreme disability is commonly associated with hardship for the affected child. This element apparently emerges in decision making not only in the United States but also in Australia, Canada, and Great Britain (Charlesworth).

At the same time, stereotypes about disabled persons might prompt inappropriate terminal decisions. This happened in one case involving an infant afflicted with Down syndrome (Baby Doe v. Hancock County Board of Health, 1982). One possible limitation appears in U.S. federal statutes and regulations prohibiting hospital discrimination against the disabled and requiring states to protect the interests of disabled infants (see In re Baby K, 1993; Johnsonv. Thompson, 1993). (Note that quality of life issues arose under the Americans with Disabilities Act in the context of state funding priorities under Medicaid.) The effect of these antidiscrimination measures is still unclear. U.S. federal regulations purport to bar quality-of-life considerations in decisions about infants' medical treatment (Clark). Those regulations are applicable to states participating in certain child abuse prevention programs and do not directly apply to individual hospitals. Moreover, decisions about medical treatment ineluctably involve consideration of the hardship and debilitation to be encountered by the patient after treatment. Where a patient's disability is intertwined with the contemplated medical service (as in spina bifida), a nontreatment decision cannot be deemed unlawful discrimination if the decision is grounded on a reasonable assessment of the suffering and hardship to be encountered by the affected individual. The disabled infant's fate is being determined by the same criteria—overall best interests— applicable to any child under treatment.

Conclusion

Diminished quality of life, in the sense of grievous bodily deterioration, is a frequent consideration in shaping the bounds of medical intervention in the dying process. The current challenge for law and medicine is to fix quality-of-life criteria for surrogate decision makers that avoid arbitrariness and abuse toward vulnerable, incapacitated patients. The key, for previously competent patients without advance instructions, should be assessment of which levels of deterioration the great majority of competent persons would consider (for their own dying processes) to be so undignified that they would prefer that life support be withdrawn (Cantor, 1996).

By using this shared vision of dignity as a guideline, decision makers will better replicate the likely wishes of nowincompetent patients, thus ultimately attaining results as consistent as possible with personal preferences. Empirical data for measuring common notions of dignity can be gleaned from public surveys as well as from scrutiny of patterns in advance medical directives. Anyone whose preferences diverge from common notions of dignity can provide individualized instructions reflecting those preferences.

norman l. cantor (1995)

revised by author

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