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QL revisited.

QL Revisited

Few expressions in contemporary bioethics and medical decisionmaking are subject to more controversy than "quality of life." In a 1977 article in the Hastings Center Report, I presented the formula QL = NE x (H + S) as a schematic way of conceptualizing the relationships among certain variables that influence quality of life. _1] Since that time, the value of this simple expression of relationships appears to have become obscured by the smoke of the continuing heated debate over selection criteria for treatment of seriously impaired infants. As I believe that quality of life is not an irrelevant consideration in moral medical decisionmaking with respect to individuals of any age, I want to reassert the validity of the QL equation as an aid to decision analysis in this storm center of bioethical controversy.

Historical Background to QL

As a young resident in pediatric surgery thirty years ago, I was trained to correct life-threatening congenital malformations in newborns, happily providing them with the prospect of sixty to seventy years of normal life. In learning how to repair a tracheoesophageal fistula or a lethal intestinal obstruction, I rarely (if ever) considered whether the application of these skills was always appropriate. The infant ventilator, total intravenous nutrition, and renal dialysis were still in a gestational phase; consequently, babies who could not breathe, eat, or rid themselves of toxic wastes died postoperatively in spite of our best efforts. However, due in large measure to the rapidly evolving life support technologies, by the end of the 1960s survival of infants with previously irremediable congenital deformities had become routine in tertiary care centers nationwide. Yet having acquired the skills necessary to prevent even the most severely impaired infants from succumbing to an early death by suffocation, inanition, or sepsis, some pediatric surgeons began to question whether the technological capability to save all newborn life implied a moral imperative as well. [2]

My reflections on "quality of life" began to emerge within this context. In a 1975 address to a multidisciplinary conference on spina bifida, I assumed it would be the duty of any individual or agency functioning as proxy or surrogate for an incompetent person (a heterogenous class that includes the mentally retarded, the senile, the comatose, and the insane, as well as babies, and, arguably, fetuses) to attempt to identify and represent the best interests of that person. [3] At that time, I argued: "A true proxy of a handicapped newborn infant would, in weighing the alternatives to treat or not to treat, try to determine the capability of the infant's leading a meaningful existence....[A] rather simple formula, ML = NE x (H + S) might be useful conceptually in portraying the dynamic relationships among those factors contributing to a meaningful life (ML) for a child and what the role of a proxy should be (using 'proxy' as advocate rather than someone who just fills out forms)." [4] Subsequently, I recognized that the term "meaningful" was laden with ambiguity, for example, meaningful to whom, and that the equation served more accurately as a definition of "quality" rather than of meaningfulness of life. Hence, the transition to QL = NE x (H + S).

QL as a Decision-Making Tool

The QL equation, as a didactic instrument, is intended to be an aid to decision analysis, not an algorithmic guide to clinical action, or a quantitative, event-related index such as the Apgar Score or the Glasgow Trauma Scale. It differs also from such efforts to quantify quality of life as the QALY Index, Sickness Impact Profile, QL-Index, and Karnofsky Scale, all of which are instruments that combine subjective and objective evaluations of physical, mental, and social states of competent adults for the purpose of helping physicians to assess the various risks and benefits of treatment for a variety of chronic diseases and disabilities. [5]

According to my formulation, the quality of life of any infant or other incompetent whose natural endowment (NE) is perceived to be greater than zero will unequivocally be enhanced by increases in contributions by Home (H) and/or contributions by Society (S). This conclusion is in no sense weakened by the observation that the variables in the equation defy quantification by "meaningful units," a critique recently advanced by law professor Nelson Lund. [6] Indeed, the subtitle of my original article in the Hastings Center Report, "A Formula without Numbers," emphasized the qualitative nature of the equation.

Despite my presentation of the QL formula within a context of child advocacy, it has been perceived as a prescription for infanticide by some authors. Lund, for example, whose article reflects a basic distrust of physicians, contends that '"Baby Does' are threatened by a very well organized and well financed interest group [the medical profession] that can be expected to promote its own agenda [infanticide] in an effective and persistent manner...." Moreover, the use of the QL equation "...requires that [physicians] embrace the opportunity to allow some individuals to die according to criteria selected by the physicians." [7]

In addition to Lund, James Childress has expressed concern that the equation will be used to justify nontreatment of impaired infants on the basis of a predicted low QL, which is itself the predictable consequence of withholding of resources by family and/or the society. [8] This is not simply a matter of theoretical interest; the practical impact is reflected in the heated criticism of the criteria allegedly used in the selection of infants with myelomeningocele over a five-year period at the Oklahoma Memorial Children's Hospital, in which all infants not selected for treatment died. In their report, the treatment team (Gross, et al.) indicated they were "influenced by Shaw's formulation of the quality of life" in using failure to meet such nonmedical selection criteria as "a family with economic and intellectual resources who lived within reach of an appropriate medical facility, or a commitment from a social agency to provide needed resources such as foster home or medical care cost" to exclude newborns from treatment. Furthermore, the authors maintained, "...there is no evading the fact that external circumstances are crucially important in the outlook for the newborn with myelomeningocele. Thus the treatment for babies with identical 'selection criteria' could be quite different depending on the contribution from home and society." [9] From this description, Nat Hentoff has drawn the conclusion that the QL equation represents "a life or death formula...used in Oklahoma to speed certain infants to their God." [10]

As Lund, Childress, and Gross, et al. have correctly recognized, QL is likely to rise for an infant with increased (H) and (S), and correspondingly decline with the withdrawal or withholding of these factors. However, they, as well as others who have criticized the approach of the Oklahoma decisionmakers to patient selection confuse the verity of the equation with its application in specific clinical situations.

The equation itself compels neither treatment nor nontreatment. It supports neither a view that all impaired infants have a right to achieve their maximal quality of life, no matter how marginal, irrespective of the impact on familial and societal resources, nor a view that the right of handicapped infants to achieve their full potential may be ethically limited by family and/or societal energies, resources, or priorities. It is instead necessary to distinguish accepting the validity of the equation for identifying factors crucial to a determination of quality of life and the purposes or contexts of its use. The situational application of the formula should be subject to moral analysis and debate.

Medical centers that treat infants with spina bifida have published selection criteria similar to those used at Oklahoma Memorial Children's Hospital without provoking the same firestorm. [11] I suspect this difference is attributable largely, if not entirely, to the implication by the Oklahoma team that they somehow used "Shaw's formulation" as an algorithm for patient triage. It is here necessary to point out that their approach predated their discovery of my formula.

The Utility and Limits of the QL

Equation

Those individuals who believe that "quality of life" has no moral relevance to medical decisionmaking, whether uncompromising vitalists or semantic gameplayers, may see QL = NE x (H + S) as an irreverent, even threatening, exercise in cost-benefit analysis. For others, who accept the relevance of a quality of life criterion in medical decisionmaking, there may be some uneasiness about stating human values in algebraic terms. In my view, quality of life, while not the only legitimate criterion (longevity and cost would be others), is not only relevant but central to humane medical decisionmaking. The values that support this concept are elucidated in the recent Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying: "... 'quality of life' [is] an ethically essential concept that focuses on the good of the individual, what kind of life is possible given the person's condition, and whether that condition will allow the individual to have a life that he or she views as worth living. . . . By allowing patients and their surrogates to make choices that consider 'quality of life,' we diminish the risk of forcing lives of pain, indignity, or overwhelming burden on those who are helpless" [emphasis mine]. [12]

I recognize the difficulty of making choices based on predictions for severely afflicted newborns whose functional prognoses--(NE) in my equation--may be a matter of educated guesswork and for whom a "best interests" standard may be illusory. Nevertheless, decisions must be made, and decisionmakers should rely on a comprehensive state-of-the-art assessment not only of the infants' physical, intellectual, and social capacities, and burden of suffering, but also of the resources realistically and reasonably available to help achieve a life "worth living." The question of whether the degree of potential enhancement of quality of life made possible by treatment of a particular baby of marginal (NE) is proportionate to the resources and sacrifices required of the family and society cannot and should not be determined by simply plugging numbers into a formula--any formula.

The point of this exposition has been to clarify my concept of the purpose, value, and limits of the QL equation and, at the same time, allay the anxieties of those who, from a misunderstanding of my prose or a misreading of my motives, have perceived in this simple formulation an imperative threatening newborn life. I reiterate my conception of the QL formula as expressed in my previous article:

I do not propose this formula as a method of calculating the numerical value of a human life. Nor do I propose it as a guide to a definition of humanhood or personhood, or as a way of assigning points to decide whether lifesaving efforts should be made or discontinued in a particular case.... The QL formula identifies in broad terms those factors which affect quality of life.

The QL equation has not relieved nor will it relieve physicians or surrogates for incompetent patients, including impaired newborns, of responsibility for the decisions they make. Ethical medical decisionmaking requires reflection on the concept of the quality of life, which in turn requires consideration of its constituent factors. The QL equation helps clarify that process in simple terms.

References

[1] Anthony Shaw, "Defining the Quality of Life: A Formula without Numbers," Hastings Center Report 7:5 (October 1977), 11:

QL - Quality of Life

NE - Natural Endowment (Physical and Mental)

H - Contributions by Home (Family)

S - Contributions by Society

[2] Anthony Shaw, "Doctor, Do We Have a Choice?" New York Times Magazine, January 20, 1972, pp. 44, 52, 54; see also, "Dilemmas of 'Informed Consent' in Children," New England Journal of Medicine 289 (1973), 855-90.

[3] For recent definition and discussion of the "best interests" standard, see President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (Washington, DC: U.S. Government Printing Office, 1983), 134-36, 215-23.

[4] Anthony Shaw, "The Ethics of Proxy Consent," in decision Making and the Defective Newborn, Chester A. Swinyard, ed. (Springfield, IL: Charles C. Thomas, 1978), 589-97. The 1975 conference proceedings were published after my Hastings Center Report article, but the address as published was not revised to accommodate the changes I made between 1975 and 1977.

[5] For a partial review and critique of some quality of life assessment indices, scores, scales, etc. other than QALYs see Walter O. Spitzer, et al., "Measuring the Quality of Life of Cancer Patients: A Concise QL-Index for Use by Physicians," Journal of Chronic Diseases 34 (1981), 585-97. For a sampling of articles on the QALY controversy, see P. Kind, et al., "Valuation of Quality of Life: Some Psychometric Evidence," in The Value of Life and Safety, M.W. Jones-Lee, ed. (Amsterdam: North Holland, 1982), 159-80; Alan Williams, "Economics of Coronary Artery Bypass Grafting," British Medical Journal 291 (1985), 325-39, "The Value of QALYs," Health and Social Services Journal, Supplement (July 18, 1985); David S. Grimes, "Rationing Health Care," The Lancet (1987), 615-16; Alwyn Smith, "Qualms about QALYs," The Lancet i (1987), 1134-36, with response from Alan Williams, 1372.

[6] Nelson Lund, "Infanticide, Physicians, and the Law: The 'Baby Doe' Amendments to the Child Abuse Prevention Treatment Act," American Journal of Law and Medicine 11 (1985), 17-19.

[7] Lund, "Infanticide, Physicians, and the Law," p. 27.

[8] James F. Childress, "Triage in Neonatal Intensive Care: The Limitations of a Metaphor," Virginia Law Review 69 (1983), 547-61.

[9] Richard H. Gross, et al., "Early Management and Decisionmaking for Myelomeningocele," Pediatrics 72 (1983), 450-58.

[10] Nat Hentoff, "They're Putting Babies on Death Row in Oklahoma," The Village Voice, May 1, 1984, p. 8.

[11] John F. McLaughlin, et al., "Influence of Prognosis on Decisions Regarding the Care of Newborns with Myelodysplasia," New England Journal of Medicine 312 (1985), 1589-94; see also editorial by Richard H. Gross, pp. 1632-34.

[12] Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (Briarcliff Manor, NY: The Hastings Center, 1987), 134, 135.

Anthony Shaw is professor of surgery at UCLA and director of pediatric surgery, Olive View Medical Center, Sylmar, CA.
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Title Annotation:quality of life
Author:Shaw, Anthony
Publication:The Hastings Center Report
Date:Apr 1, 1988
Words:2333
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