I. QUALITY OF LIFE IN CLINICAL DECISIONS

Quality of life is one of the most important but controversial issues in clinical ethics. The contemporary development of the concept and its use as a normative criterion in clinical decision making date from the period after World War II, when advances in medical technology increased tremendously. Along with other ethical criteria—for example, a medical indications policy (Meilaender; Ramsey; U.S. Department of Health and Human Services); the ordinaryextraordinary means criterion (Connery; Johnstone; Reich, 1978a); or the reasonable person standard (Veatch)—quality of life is used in conflict situations to help make clinical decisions about whether or not to forgo or to withdraw medical treatment from patients.

Modern medicine has the capacity through the application of technology to save lives that until relatively recently would have been lost to acute disease or accident. As a consequence, some of these lives either are shaped by severe disabilities or chronic illness or continue to exist only at the biological level (for example, infants born with multiple congenital abnormalities; elderly patients who suffer chronic illnesses after recovery from an acute illness; and patients in a persistent vegetative state (PVS). Quality of life is frequently proposed as a criterion in making treatment decisions about these patients, whose lives might be saved only to be lived out in severely impaired conditions.

Quality-of-life considerations arise in several key areas of clinical ethics: termination or shortening of human life, including issues of abortion and euthanasia; limiting human reproduction, such as through contraception, sterilization, or abortion; interventions that alter the genetic and biological nature of humans, such as embryo cloning or eugenic engineering; and public policy areas, including economics, ecology, and cultural development (Reich, 1978a). This article will focus principally on the first issue.

Quality-of-life considerations raise a number of important questions that bear specifically on clinical ethics: (1) Given the tremendous advances in medical technology and the implicit imperative to use it, what are the goals and limits of medicine? (2) What is normatively human, and thus, what is it that we value about life? (3) Are quality-of-life judgments purely subjective, or are there objective criteria that guide them? (4) Can there be a life that is so burdened by pain or disability that it can be judged not worth living?(5) Who should decide to terminate treatment? (6) Is it morally legitimate to include considerations of the patient's prior medical condition in a decision about forgoing future medical interventions? and (7) Is it morally legitimate to include in treatment decisions the potential burdens on affected others who will have to care for a severely handicapped patient?

The following sections will provide some preliminary clarifications and conceptual frameworks for understanding quality of life; define quality of life and identify the spectrum of positions that come under the general heading of this normative criterion; articulate the evaluative status of life that is adopted in the various quality-of-life positions and compare the so-called quality-of-life ethic with the sanctity-of-life ethic; and analyze both the normative dimensions of quality-of-life judgments and the normative theories that justify these judgments.

Preliminary Clarifications

Statements or claims about a "quality" or "qualities" of life can be either evaluative or morally normative (Reich, 1978a; Walter). Evaluative claims or statements indicate that some value or worth is attached either to a characteristic of the person (for example, capacity to choose) or to a type of life that is lived (for example, free of pain and handicap). Thus, evaluative statements assess that the quality, and by implication the life that possesses the quality, is desired, appreciated, or even considered sacred. These statements, however, do not establish whether an action to support or to terminate life is morally right or wrong, nor do they specify which action would be morally obligatory. On the other hand, morally normative or prescriptive claims about a quality of life always involve a moral judgment on the valued quality and, by implication, a judgment on the life that possesses the quality. These latter statements, then, not only presume that a quality—for example, cognitive ability—is valued, but they also entail judgments about whether, and under which conditions, one must or ought to protect and preserve a life that possesses the valued quality or qualities. Thus, one could formulate a prescriptive claim that "any life that has cognitive abilities always ought to be given all medical treatment." Evaluative statements about quality of life do bear on clinical decisions, but the more important and controversial issues are concerned with the validity and use of the normative claims about quality of life, especially with regard to patients who lack any ability to participate in the clinical decision.

Many different perspectives could be used in establishing, defending, and assessing evaluative and normative claims in the area of quality of life. A feminist perspective could be used to analyze and critique an evaluative claim that proposes the discursive quality of rationality to be superior to a rationality based on the qualities of affectivity and caring(e.g., Gilligan; Sichel). A perspective from the elderly (Kilner) or the disabled community could be used to assess the normative claim that the qualities of youth, physical beauty, independence, and athletic ability—qualities that are extolled and prized in modern Western culture—are necessary for one to live well. Sociological perspectives could be used to study the cultural patterns of commitment to quality of life (e.g., Gerson), or legal perspectives to study the jurisprudential implications of these claims on the disabled (e.g., Destro). Each of these perspectives, and more, would be important to consult in adequately assessing both evaluative and normative claims about quality of life. However, the remainder of this article will use only the philosophical and theological perspectives that have been developed in the literature on quality of life vis-à-vis treatment decisions.

Definitions of Quality of Life

There is much ambiguity about what quality of life means, and consequently there is little agreement about the definition of this criterion. First, there is the word life. It can refer to two different realities in this context: (1) vital or metabolic processes that could be called human biological life; or(2) human personal life that includes biological life but goes beyond it to include other distinctively human capacities, for example, the capacity to choose or to think. Anencephalic infants and PVS patients have biological life, but they do not possess human personal life.

Similarly, quality can refer to several different realities. Sometimes the word refers to the idea of excellence. So defined, its meaning is bounded only by the horizons of our imaginations and desires. It is difficult to discover any objective criteria to assess quality-of-life judgments under this definition. Consequently, one may fear that patients whose lives cannot achieve the expected level of imagined or desired excellence, such as the handicapped or the dying, will either not be offered any life-sustaining treatment or will be actively killed.

Another possible definition is to understand quality as an attribute or property of either biological or personal life. Most proponents of quality of life subscribe to this general definition. Some authors identify quality of life with a single valued property of life, while others identify it with a cluster of valued properties. Thus, this definition represents a spectrum of positions. At one end of the spectrum is the original position of Richard McCormick, who isolated only one quality or attribute to be considered as the minimum for personal life: the potential for human relationships (1974). For McCormick, a Down syndrome baby would possess the potential for human relationships, but an anencephalic infant would not. At the other end of the spectrum, Joseph Fletcher originally defined the indicators of "humanhood" by reference to fifteen positive qualities, among them self-awareness, concern for others, curiosity, and balance of rationality and feeling, and five negative properties, among them, that humans are not essentially parental (1972). He believed that many, if not all, severely handicapped children would not possess the attributes necessary to live a life of quality. Between these two ends a number of "median" positions exist that identify quality of life with valued properties of life. For example, Earl Shelp has proposed minimal independence as the central property in his quality-of-life position. He includes in this basic property the abilities to relate to others, to communicate, to ambulate, and to perform the basic tasks of hygiene, feeding, and dressing. From this perspective, many, but not all, Down syndrome children would possess the necessary attributes to live a life of quality.

James Walter has suggested that the word quality should not primarily refer to a property or attribute of either physical or personal life. Rather, the quality that is at issue is the quality of the relationship that exists between the medical condition of the patient, on the one hand, and the patient's ability to pursue human purposes, on the other. These purposes are understood as the material, social, moral, and spiritual values that transcend physical, biological life. The quality referred to is the quality of a relation and not a property or attribute of life. Thus, for patients to judge that they possess a quality of life means that the patients themselves would evaluate that, based on their medical condition, they are able to pursue values important to them at some qualitative or acceptable level.

Evaluative Status of Life

When quality of life is defined by reference to a property or attribute of physical life, then some basic questions are raised about the value of physical life itself. What is it that we value about our physical lives? Do we value biological existence in and for its own sake, or because of the presence of some property or attribute in that life, for example, cognitive ability? What theological or philosophical justifications can be offered for one's evaluations of life?

Many who define quality of life basically by reference to a property do not attribute intrinsic value to physical life. For example, in some of his writings McCormick has suggested that physical life does not possess inherent value but is a good to be preserved precisely as the condition of other values (1981, 1984). Based on his theological convictions that physical life is a created, limited good and that the ability to relate to others is the mediation of one's love of the divine, McCormick resists attributing to physical life itself the status of an absolute value. Kevin O'Rourke and Dennis Brodeur have stated that physiological existence as such is not a value if that life lacks any potential for a mentalcreative function. Other quality-of-life proponents such as David Thomasma and his colleagues have described physical life as only a conditional value. According to these positions, what is valuable or worthwhile about physical life is either the properties that inhere in life or the values that transcend biological existence but whose pursuit is conditioned on the presence of physical life.

When quality of life is not defined as a property or attribute but rather as a qualitative relation between the patient's medical condition and his or her ability to pursue human values, then a different evaluative status is accorded to physical life. Walter has argued that physical life, as a created reality, is an ontic value, that is, a true and real value that does not depend on some property to give it value. He has tried to acknowledge that physical life is objectively a value in itself, though it may not always be experienced as such by some patients. Thus, physical life is not simply a useful or negotiable good; on the other hand, neither is it an absolute value that must be preserved in every instance.

Some commentators have attempted to address questions about the evaluative status of life by contrasting the quality-of-life ethic with the sanctity-of-life ethic (e.g., Johnstone; Reich, 1978b; Weber). Most proponents of a sanctity-of-life ethic (e.g., Connery; Johnstone; Meilaender; Reich, 1978a) do not argue that physical life itself is an absolute value. In this regard, at least, they agree with all proponents of the quality-of-life ethic. However, these authors frequently claim that when quality of life is understood as a property of life, either no value or only varying degrees of value is accorded to physical life. Possessing no intrinsic worth, physical life must receive its value based on whether it possesses one or more of the valued qualities, for example, neo-cortical function.

The sanctity-of-life position argues that this view is intolerable on several counts. First, quality of life does not acknowledge the equality of physical lives and the equality of persons because it assigns only relative or unequal value to physical lives and persons when certain valued qualities are only partially present or totally absent. Second, quality of life denies that all lives are inherently valuable, and so it leaves open the possibility that some lives can be deemed "not worth living." Finally, it is charged that the quality-of-life position adopts a two-level anthropology committed to protecting physical life only as an instrumental value (Reich, 1978b). Consequently, it is argued that the sanctity-of-life position is far superior because it affirms the equality of life on the basis that physical life is truly a value or good in itself. Life is not merely a useful or negotiable value, dependent on some other intrinsically valuable property.

In conclusion, it is not always clear how useful it may be to contrast sanctity of life with quality of life, as if each position could be represented by an individual and distinct "ethic." Because there are many positions that fit under each one of these "ethics," the terms and results of the comparison really depend on which two positions are selected.

Normative Considerations of Quality of Life

The most important issues related to quality of life in clinical decisions are those concerned with the normative dimensions of the criterion. This level involves several considerations: (1) assessments about what is considered normatively human, or what reasons can be adduced to consider a certain trait or property of life decisive in making a clinical decision to treat or not to treat; (2) the normative moral theory that grounds and justifies moral obligations; and (3) the limits or exceptions to moral obligations to preserve life and the moral justifications for these limits or exceptions. The first issue is definitional in nature, although it also entails some normative features. The second issue relates to the debate over deontology, which determines the rightness of actions by reference to moral rules or the doing of one's duty, and teleology, which determines moral rightness by reference to the ends or consequences of actions. The third issue involves a discussion of the nature and degree of obligation in moral duties to preserve life.

Before turning to actual positions and their normative implications, it is important to distinguish cases where quality-of-life judgments are made by patients who possess decision-making capacity, and those cases where patients— for example, PVS patients, neonates, or severely mentally handicapped adults from birth—lack the capacity to decide. Many issues need to be faced once patients with decisionmaking capacity are permitted to make treatment choices based on their own assessments of quality of life. However, these problems may pale in comparison to the application of the quality-of-life criterion to situations where a proxy or surrogate must make a decision to terminate treatment.

Some authors (e.g., Ramsey) argue that quality-of-life judgments should never be permitted in treatment decisions for patients who lack decision-making capacity. Only competent patients can make these judgments for themselves; no one may morally substitute his or her quality-of-life judgments for those of someone else. Thus, the moral criterion that applies in treatment decisions for patients who lack decision-making capacity is whatever is medically indicated. However, quality-of-life proponents argue that the medical indications policy could be devastating for these patients. If surrogates do not apply some measure of the quality-of-life criterion, these patients may be condemned to lives of pain, suffering, or burden that no person with decision-making capacity would reasonably choose (Hastings Center). Most of the following considerations will be concerned with the use of quality-of-life judgments in cases involving patients who lack decision-making capacity.

When some proponents of this criterion define quality of life as a property or attribute that gives value to physical life, they are either implicitly or explicitly defining what is normatively human, that is, how personhood ought to be defined. For example, when Fletcher originally defined the fifteen positive and five negative indicators of humanhood, he was defining the nature of personhood, and therefore, who is morally entitled to medical care. If a handicapped neonate or adult lacked a number of the indicators of humanhood but needed medical treatment to survive, in Fletcher's view (1972), the patient should not be treated.

The moral obligation to treat or not to treat patients is derived from the objective presence or absence of a valued property that gives worth and moral standing to the patient's life. When the properties that define humanhood are absent, the patient is not considered a moral subject who possesses any rights to healthcare. The moral theory that Fletcher adopts in his quality-of-life position is a form of teleology called consequentialism. In this theory, any moral claim about the value of a patient's life or any moral duty to provide medical treatment is almost entirely based on predictable qualitative consequences for the patient or for others whose interests are involved in the situation.

In a similar position on quality of life, Earl Shelp has sought to articulate the quality or property that defines the normatively human for handicapped neonates and the extent to which parents and the medical community have moral obligations to these never-competent patients. He adopts a quality-of-life position that corresponds to the main features of a property-based theory of personhood. A property-based theory, as opposed to a genetic-based theory, seeks to designate a desired quality or property that must be present before one can consider a particular human life to be an unqualified member in the moral community.

Shelp has argued that any neonate must possess the possibility of attaining a "minimal independence" before the child can be considered a person in a full sense. If the newborn will never have the capacity of minimal independence, even with the help of modern medicine, then the parents can decide on the basis of quality-of-life considerations that their child, who is in need of medical treatment, should not be treated.

The normative position that underlies Shelp's quality-of-life criterion is a type of a socially weighted calculus. Because he believes that no newborn, whether normal or impaired, is a full member of the moral community (person), he maintains that there is no compelling reason why a severely defective newborn's interests should take priority over those of the parents or siblings who are already persons in a moral sense. In fact, the interests of the ill newborn can be weighed against the independent interests of those whom the child will affect. Thus, if the burden imposed on others is unreasonable or disproportionate, then a decision to forgo or terminate all treatment for the imperiled child is morally legitimate.

What may be problematic in both Fletcher's and Shelp's versions of quality of life, and certainly what worries all opponents of quality-of-life positions, is that their views appear to define and prescribe the "good life" in terms of the quality or qualities necessary to live a minimal moral existence. Their positions then become entrapped within what William Aiken has called the "exclusionary" use of quality of life. The lack of certain valued qualities in a patient's life is a way of positively excluding potential patients from the normal standards of medical and moral treatment.

Other versions on the spectrum of quality-of-life positions do not limit the meaning of quality of life merely to a property of life and then establish moral obligations on the basis of the presence or absence of the property. In addition, these positions do not define the normatively human by reference to a valued attribute and then identify it with quality of life. For them, quality of life functions as a way to include in the clinical decision what they believe are morally relevant factors that are often excluded by other criteria. In other words, some proponents of this normative position hold that quality of life is a patient-centered way of discovering the best interests of a patient.

These authors (e.g., Sparks) argue that in the clinical situation for noncompetent patients, we should be trying to discover what is in their best interests. They recognize that other criteria, such as the ordinary-extraordinary means criterion, have also been used to determine the patient's best interests, and that these criteria have been used to ground moral duties to patients in treatment decisions. However, they argue that these criteria often exclude some morally relevant factors needed to make an adequate and informed moral judgment, for example, the experienced burdens of the patient's prior medical condition in cases of spina bifida.

A comparison of the quality-of-life criterion with the ordinary-extraordinary means criterion might be helpful in illustrating the point that these authors are making. Those who subscribe to the ordinary-extraordinary means criterion argue that all ordinary means of preserving life are morally obligatory, but extraordinary means are morally optional. They do permit surrogates to use what could be called a limited version of the quality-of-life criterion. Surrogates can legitimately include quality-of-life considerations in their treatment decisions, but these considerations are only valid where the treatment itself would cause either excessive harm or leave the patient in a debilitated state (Connery; Reich, 1978b). For example, a surrogate could morally refuse quadruple amputation because the surgery itself would leave the patient with such an extremely low quality of life that the patient would have no duty to undergo the surgery.

All too often, however, the use of this criterion excludes all quality-of-life considerations that cannot be directly connected to the treatment itself or to its application. For example, the fact that a child who is born with Lesch-Nyhan syndrome will have a very poor quality of life is not considered relevant in the clinical decision to treat the child for a life-threatening condition. Lesch-Nyhan is an incurable genetic disease that causes its victims to suffer uncontrollable spasms and mental retardation. Once the young patients of this disease develop teeth, they gnaw their hands and shoulders, and they often bite off a finger or mutilate other parts of their bodies.

Some proponents of the quality-of-life criterion (e.g., McCormick, 1986; Sparks) identify this criterion with the category of "patient's best interests." They adopt what they believe is a patient-centered, teleological assessment of the best interests of the patient. If a patient in a life-threatening condition does possess at least a minimal ability to relate to others, then it can be presumed that the patient would want treatment; thus, treatment should be provided. This form of the quality-of-life criterion maintains that physical life itself is the ground of a prima facie duty to preserve it.

However, other factors—for example, the patient's prior medical condition, which might include permanent loss of all sentient and cognitive abilities, or the financial cost to the family and society of caring for these patients—also come to bear in determining the actual moral duty these patients have to preserve their own lives. Proponents of this version of the criterion argue that medical interventions to continue the lives of accurately diagnosed PVS patients and neonates born with anencephaly or hydranencephaly are unwarranted. These patients have reached the limits of their moral obligations to preserve their own lives, based on an assessment of their best interests. Any medical intervention to save their lives would only perpetuate a condition that most people who possess decision-making capacity would judge burdensome and intolerable. These authors do not judge that some patients' lives are not worth living; however, they do argue that the experienced burdens on patients' lives prior to treatment must be considered in determining the patient's best interests, and thus whether the patient himself or herself has a moral obligation to preserve life.

One of the more difficult questions involved in the debate over the use of quality-of-life judgments is whether one can include in the assessment of best interests of the patient any of the burdens that accrue to affected others. For example, when a family must face the tragic situation of financially and psychologically caring for a severely handicapped child, many would find such a lifelong commitment quite burdensome. Must one discount in treatment decisions the burdens experienced by the family and society in caring for these children, and focus only on the burdens imposed on the child either by the disease or by the treatments themselves? Or is it morally legitimate to include at least some of the burdens imposed on the family and society in assessing the patient's best interests? In other words, how broadly should one interpret the category of "best interests of the patient"? And finally, should the interests of others be considered in their own right? These are some of the questions that the proponents of quality of life regularly ask in clinical situations.

Richard Sparks (1988) is critical of any position that tries to understand the proportionality of benefits and burdens in a way that weighs a severely handicapped child's claims against the interests, claims, and rights of others who are affected, whether within the family or in society. He is also critical of quality-of-life proponents like McCormick, whom he sees as too narrowly defining the range of burdens in these cases. Sparks suggests the phrase "total best interests" as a way not only of including the burden experienced by the patient but also of including the broader social factors, for example, the financial cost, psychic strain, and inconvenience borne by others. He reasons that the patient's social nature must be taken into account, not only in calculating benefits (for example, the benefit to the patient derived from his or her ability to relate to others), but also in calculating burdens (for example, psychic strain to the family or financial cost to society).

Sparks's version of the quality-of-life criterion rejects a socially weighted calculus similar to the one Shelp adopts in determining the best interests of the patient. He judges that such a calculus denies the inherent worth of each individual patient, and that it weighs the benefits and burdens experienced by the patient against those of affected others. Although he argues that the burden to others should be included in assessing the total best interests of the patient, this burden is only one factor among many that must be considered. What is essential is that one not construe the burden to the patient and the burden to affected others as being in competition with one another when making decisions to terminate medical treatment.

By trying to construe the social burdens from the patient's perspective, Sparks believes one can avoid the competitive atmosphere that is part of the socially weighted position. His version of quality of life seems to imply that the child would not, and perhaps should not, want to be treated if it were an excessive social burden because the child's best interests would not be served if these burdens were placed on those who must care for him or her.

The spectrum of definitions and positions representing quality of life makes it difficult to identify any one quality-of-life ethic for analysis or critique. Though there are some shared features among the various positions, in the end it is necessary to assess the validity or invalidity of each position on its own merits.

james j. walter (1995)

bibliography revised

SEE ALSO: Abortion; Aging and the Aged; Death; Ethics: Normative Ethical Theories; Family and Family Medicine; Genetic Testing and Screening; Life Sustaining Treatment and Euthanasia; Long-Term Care; Mentally Disabled and Mentally Ill Persons; Narrative; Pain and Suffering; Palliative Care and Hospice; Rehabilitation Medicine;Virtue and Character; and other Life, Quality of subentries

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