II. QUALITY OF LIFE IN HEALTHCARE ALLOCATION

Issues concerning quality of life in healthcare allocation arise from three factors. First, there is an important project that a society wants to undertake: in this case, to provide access to healthcare for more of its citizens. Second, unlike the ordinary marketplace, in which individuals purchase what they want for their own reasons, with no need to seek anyone else's agreement about what to purchase, a society that collectively funds a community project such as healthcare must agree on what outcomes will count as fulfilling that goal. Third, resources are limited partly because taxpayers cannot be expected to forfeit an unlimited amount of their income, and partly because there are other important projects that command taxpayers' funds. Together, these three factors mean that a society needs reasonable assurance that expenditures will actually enhance health without wasting resources.

Prioritizing expenditures becomes urgent because healthcare is extraordinarily expensive, commonly consuming around 15 percent of the gross domestic product of the United States. The need is further dramatized by various cases in which families of patients with anencephaly or persistent vegetative state have insisted on unlimited medical support, regardless of the cost, on the grounds that all life is infinitely precious (Matter of Baby K, Miles). Many who have commented on such cases deem it wasteful to prolong the life of someone who will never be conscious while so many other social needs, from healthcare to education, are underfunded. More controversial examples point out the trade-offs between costly new technologies that benefit a few identified patients versus more routine kinds of care that benefit many more people whose identities may never be known (Eddy, 1992a, 1992b). Cases such as these raise the question of whether it is permissible, and if so in what way, to consider quality of life in healthcare resource allocation.

There are two ways to do so. Negatively, one might rule out certain kinds of expenditure on the grounds that they produce little or no benefit for the patient. This might be based on evidence that the treatment has not been shown to be effective, as when a treatment is highly experimental or when a patient is so close to death that no medical interventions can help. Positively, one might invoke quality-of-life judgments to give funding priority to health interventions that will produce the greatest overall benefit for the money spent. Since healthcare is intended to improve as well as prolong life, quality-of-life judgments could shape this quest for the greatest benefit.

It is important to identify some basic distinctions. To speak of the quality of life is not equivalent to making judgments about the value of that life. Persons suffering from a painful terminal illness might have a poor quality of life even though their value and dignity as human beings are every bit as precious as those of healthier persons. Similarly, the quality that someone's life has for himself or herself is not equivalent to the impact that the person has on another person's quality of life. A patient suffering from advanced Alzheimer's disease or other dementia, for instance, might be content and free of suffering, while posing serious burdens and sorrow for family members. Finally, judgments about the quality of an individual's life might come from the individual himself or herself, or from others. Several of the most commonly used instruments for measuring quality of life rely on views elicited from the public at large as they contemplate the life quality caused by certain illnesses or disabilities. However, these opinions may not match the views of people who actually experience these conditions.

Formulas for Measuring Health Benefits

A variety of instruments have been developed to measure the benefits of healthcare interventions. The human capital approach, for instance, measures the value of saving or prolonging a life by projecting that person's future earnings. This method is not widely accepted, mainly because it looks only at market valuation of economic contributions, and not at broader features of the person's experiences, relationships, and noneconomic contributions.

A more sophisticated instrument, the willingness-to-pay approach, hypothetically lets individuals determine what value they place on a prolongation or improvement of their lives by indicating how much they would actually be willing to pay in order to avoid a certain risk of mortality or morbidity, or to gain a chance at improving their lot. Though this approach permits individuals to make their own quality-of-life judgments, its main disadvantage is that it could represent wealth status rather than personal preferences, which may in turn reflect factors such as social injustices (Brock).

A still more sophisticated approach does not try to translate morbidity and mortality directly into cash equivalents, nor to count lives saved or the number of years saved by a particular healthcare intervention. Rather, it attempts to determine the effect that an intervention has on the quality as well as duration of life by computing Quality-Adjusted Life-Years (QALYs). Extending an extra year for a patient in a vegetative state, for instance, is presumably not as worthwhile as adding a year of vigorous, healthy function. This approach estimates the quality of life that may accompany a particular set of circumstances before and after a proposed intervention, such as a medical treatment or a course of physical therapy, and calculates how long the change is expected to last. The net value of that intervention can then be compared with the value of other healthcare interventions to determine which ones produce the greatest value.

Quality of Life Measurements: Application and Controversy

Various instruments have been used to measure quality of life. The Quality of Well-Being (QWB) Index defines twenty-four health or functional states from perfect health to death. Through questionnaires and community surveys, each QWB state is given a weight, from zero for death to one for perfect health (Kaplan, 1992, 1985; Kaplan et al.). Other scales, such as the Quality of Life Index or the Sickness Impact Profile, evaluate quality of life according to factors such as ability to perform daily activities, feelings of satisfaction with one's health status, and the like (Brock; Zeckhauser; Zeckhauser and Shepard; Wenger et al.).

The state of Oregon used the QALY approach in an effort to ensure, on the negative side, that it does not waste limited state dollars, and on the positive side, to maximize the good achieved by its Medicaid program by avoiding marginally valuable expenditures while expanding coverage to encompass numerous uninsured people. Initially, a series of town meetings and phone surveys elicited community opinions about the value of a variety of conditions, such as perfect health, feeling depressed and upset, being burned over large areas of one's body, and so on. The value system thus generated was then combined with physicians' estimates of the magnitude and duration of effects produced by various medical interventions for those assorted conditions. After combining the QALY units derived for these treatment/condition pairs with their respective costs, a priority list was developed. Taking the prevalence and cost of treatment for each condition on that list, accountants were able to tell the legislature how much money would be required to fund the program as the next lower priority item was added. The legislature then set its Medicaid budget and identified a cutoff point: Eligible recipients would receive all services prioritized above that line, but not below it (Garland; Eddy, 1991; Hadorn; Kaplan, 1992). This first attempt yielded enough unexpected and unsatisfactory results that the priority list was significantly changed before the program was finally approved (Eddy, 1991).

The problems the Oregon process encountered illustrate the ethical challenges in using quality-of-life considerations in healthcare allocation. They begin with methodological problems. Oregon's plan, and QALY approaches generally, are criticized for ignoring the wide variations of severity that can characterize any medical condition, from broken bones to lupus, and the equally varying results that any given treatment can have for a particular condition. Further, it is not clear whose values should be attached to these factual descriptions. Opinions solicited from the public at large may be based on a poor understanding of the medical condition at stake. A one-sentence summary on a questionnaire, for instance, is hardly sufficient for understanding what it is like to live as a paraplegic. The Oregon plan, in particular, was criticized for eliciting values mainly from articulate, middle-class persons rather than from the poor and disabled, who would be most affected by the resulting distribution of healthcare resources. On the other hand, it is not always possible to discover patients' views on their own quality of life. Advanced dementia, infancy, stroke, retardation, and a host of conditions can prevent the individual from expressing his or her views or even, in some cases, from conceptualizing his or her quality of life. These and other methodological criticisms (Morreim, 1986, 1992) are important, because even if one can on principle justify allocating healthcare resources according to treatments' impact on life quality, it is morally more difficult to justify using measures that may not capture what they should.

Moral issues also concern the very idea of using quality of life as a basis on which to allocate care. Vitalists who believe that all life is infinitely valuable, regardless of its quality, simply reject the idea that interventions should be graded according to how well they enhance quality of life. Others, however, insist that it is wasteful, if not unconscionable, to spend limited resources sustaining the lives of permanently unconscious or imminently dying patients.

A corollary objection insists that the cost of treatment is no reason for restricting it. Individuals should not suffer needlessly just because their care is costly. Rather, costs should be contained in other ways, such as by eliminating wasteful expenditures. In reply, it is argued that needs are always greater than resources, rendering rationing inevitable, and that overt public decisions are preferable to covert priorities.

A further critique holds that maximizing QALYs, somehow reified as a good in themselves, ignores the justice of the distribution. In one of the classic challenges to utilitarianism, critics point out that a pure cost–benefit approach can ignore terrible suffering, simply because some other intervention may be cheaper and help larger numbers of people. The first listing of Oregon's priorities, for instance, ranked dental caps for pulp exposure higher than surgery for ectopic pregnancy, and splints for temporomandibular joints higher than appendectomies for appendicitis. Although some people might reply that only the methodology needs to be adjusted (Eddy, 1991), others would argue that this approach is inherently incapable of honoring the preciousness that attaches to the lives and well-being of individual people (Hadorn). Severely disabled persons may not be capable of enjoying as great a benefit as healthy persons snatched from the jaws of death, but their comfort and personhood are not necessarily less important.

Another controversy concerns whose values should shape estimates of life quality. If the purpose of medical interventions is to help individuals, perhaps patients should be permitted to define for themselves what constitutes a benefit. Studies indicate that persons afflicted with a particular malady often rate their quality of life higher than observers do (Evans et al.). On the other hand, a broader kind of fairness might require recognizing that sometimes individual preferences are costly and idiosyncratic, and acknowledging that the community paying for care should be permitted to use its own community values to determine monetary allocation (Morreim, 1986, 1992).

A related concern points out that the QALY approach inherently discriminates against the elderly and the disabled, whose prognoses and initial quality of life are typically lower than average. In reply, it is argued that the elderly at least have had the opportunity to complete their life's biography (Callahan), and that while methods to value the comfort and improved function of the disabled can be developed, aggressive medical interventions may not serve the most severely compromised patients well.

Conclusion

The issues cannot be resolved here, but a few comments seem pertinent. First, society is not required to fund every expenditure that each citizen might find worthwhile. Vitalists should arguably be permitted to seek life support for permanently unconscious loved ones, but this does not entail that a society that does not share this belief must pay for their quest (Morreim, 1992). Second, the moral character of a society is at least partly reflected by the ways it treats its weakest members. The fact that someone is not useful to others does not entail that his or her sensibilities are insignificant or undeserving of help. Third, those obligations are not unlimited. There is a virtually endless variety of ways in which society can arrange its resource priorities, and none of them is the single morally correct approach. What is probably most important is to implement procedures that are fair and open to wide participation, are sensitive to varying viewpoints, and embrace a respect for citizens as persons (Brock, Engelhardt).

e. haavi morreim (1995)

revised by author

SEE ALSO: Chronic Illness and Chronic Care; Communitarianism and Bioethics; Consensus, Role and Authority of;Economic Concepts in Healthcare; and other Life, Quality of subentries

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