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Justice and the economics of terminal illness.

Justice and the Economics of Terminal Illness

The costs of medical care have reached a level that can no longer be ignored: $1.25 billion a day in the United States. The expenditures for health care as a proportion of GNP are now almost 11 percent. [1] Insurance planners, government officials, labor leaders responsible for health care benefit plans, as well as ordinary citizens, have recently confronted the question of whether it is acceptable to limit health care based on economic considerations, especially as some of the most expensive care is at best only marginally useful or even useless.

The most obvious area to impose such limits is health care for the terminally ill. Terminal illness can be defined as "an illness in which, on the basis of the best available diagnostic criteria and in light of available therapies, a reasonable estimation can be made prospectively and with a high probability that a person will die within a relatively short time." [2] Enormous amounts are spent for "heroic" interventions on patients who die soon after receiving treatment. Indeed, between 20 and 30 percent of health care expenditures are devoted to the terminally ill. [3] Ethical questions about the legitimacy of using economic considerations for deciding about the provision of such care are sure to become crucial.

Conceptual and ethical clarity is required in addressing the ethics of the economics of care for the terminally ill. Conceptual analysis alone reveals two separate issues, one of which presents no serious ethical problem, while the other poses an enormous ethical dilemma.

Useless Versus Marginally Beneficial Care

An initial distinction must be made between "useless" care that is of no benfit at all to a patient, and "marginally beneficial care," that is beneficial but not very helpful relative to the social and economic costs involved.

Useless Care. Some may hold that whether a given treatment is useless should be determined by a clinician or a consensus of medical professionals. It is more appropriate, however, to define it with reference to the patient's perspective: Useless care offers no net benefit for the patient, given the patient's value system and concept of benefit. Useless care is really undesired care.

Not much is known about the dynamics of useless care. Its extent and its proportion relative to total care for the terminally ill or to total expendable care are unclear. Physicians who fear litigation may provide such care. If so, the law may need to be changed so that physicians will not have to practice defensive medicine. However, it is more likely that the law does not require the provision of useless care and that the real problem is that physicians have unreasonable fears about their legal jeopardy, which may be remedies by education.

No rational person would want care that was perceived as useless or of zero net benefit. If patients or their agents are actively trying to refuse such care, its provision is a violation of the ethical principle of autonomy and the legal requirement that patients' bodies not be invaded against their consent. If the patient would refuse the care if only he or she knew that it served no purpose supported by his or her values, such treatment is prima facie a violation of autonomy and informed consent (even though the appearance of consent may be present in a signed form).

In determining the appropriate relationship of ethics and economics in decisions about care for the terminally ill, it is important to consider some guidelines for policy formation. These guidelines might be used by health insurance planners, any future national health insurance or service, health maintenance organizations, and professional review organizations. The notion of useless care suggests the following guideline:

Care judged by the competent patient (or the legal agent for the competent patient within the limits of reason) to have no benefit or care provided without a valid consent should not be covered under health insurance and should not be reimbursable.

Marginally Beneficial Care. More serious ethical problems are raised by care that is beneficial to the patient, as assessed by the patient or surrogate on advice from professionals, but is so marginally beneficial that an objective observer might question whether the cost is justified. From the patient's perspective, on balance the potential benefits seem worth the burdens. To warrant withholding the care, appeal must be made either to the patient's sense of altruism or to some claim that he or she is not entitled to the care.

Having a terminal illness is directly relevant to the concept of marginally useful care since the terminal condition directly affects the extent of the predicted benefit. Some care has predicted benefits so marginal in comparison with social and economic costs that it simply must be--will be--forgone. We can either rely on personal, ad hoc decisions by care providers to use good judgment in eliminating such care, or create a rational, systematic plan to exclude it.

It is dangerous to rely on the physician to make ad hoc decisions to restrict access. Such decisions are subject to the variability and dangers of subjective, nonsystematic action. Different caregivers will have different standards of what constitutes expendable care. Because of sociological variables, patients will be treated differently and perhaps even discriminatorily. This is likely to occur even though there is every reason to assume that individual caregivers will be motivated by fairness and good will in making such decisions.

There is in addition an ethical problem involved in relying on individual caregivers to eliminate marginally useful but expensive care. The Hippocratic tradition mandates that the physician do what he or she thinks is in the patient's interest, and does not recognize a qualification such s "unless the costs are great in comparison to the benefits to be gained," or take into account what economists call "alternative costs," that is the costs of goods lost by not being able to use resources elsewhere. Yet, when the alternatives are assessed, it is clear that marginal benefits are at least problematic. We are in what Clark Havighurst has called the "quality/cost no man's land." [4] If physicians are asked to refrain from providing marginally useful care for their patients in order to serve society, they must abandon their Hippocratic commitment.

The professional and moral responsibilities of physicians to benefit their patients and respect their rights suggest a second guideline for health planners in decisions relating ethics to the economics of terminal care:

Any physicians choosing to remain committed to their Hippocratic duty to do what they think will benefit their patients or what is right by their patients should be excused from, indeed, precluded from, deciding to exclude care on grounds of social costs.

A corollary to this principle is required to protect patients when physicians have decided to abandon a patient-centered perspective:

Any physicians choosing to abandon their commitment to pursue only the rights and welfare of their patients to participate in decisions about eliminating marginally useful care should inform their patients of this potential conflict of interest.

Some persons or groups, whether inclusive or exclusive of clinicians, will ultimately have to take responsibility for limiting marginally useful care for the terminally ill. They will need a set of ethical principles to guide their decisions. While the principle of maximizing the total net good is often cited as the basis for making resource allocation decisions, there is an important alternative: the principle of justice. It has radically different implications for limiting terminal care.

Utility and Justice

The most obvious approach to excluding different types of care is to determine what alternatives will maximize the good produced per dollar invested, relying on techniques such as cost-benefit analysis. However, for several reasons, cost-benefit analysis should not be seriously considered as a way of deciding a fair or right provision of medical services to the terminally ill. [5]

Cost-benefit analysis may be objected to on grounds that some values are inherently more quantifiable than others, or that quantification and rationalization of decisionmaking per se are problematic. But the central problem with this method is that it excludes moral considerations that many people find crucial. Cost-benefit analysis focuses exclusively on efficiency in pursuing a goal: It measures aggregate benefit and harm without regard to how the benefits and burdens are distributed or the relative moral claims of potential recipients. It is very good at producing efficient solutions, but fails to take into account any other moral principle, such as justice, autonomy, or promise-keeping.

As applied to care for the terminally ill, standard cost-benefit analysis is likely to lead to conclusions that benefits to be gained for specific patients do not equal the benefits to others if the resources were allocated to them. If human capital approaches are used to calculate the value of a medical intervention, by definition the human capital gained will be near zero. [6] If willingness-to-pay approaches are used, commitments to the terminally ill will again be minimal, in part because many who are terminally ill will be unable to pay very much for a benefit, especially a marginal one, and in part because the healthy may not be able to emphatize with the terminally ill. [7]

This criticism of cost-benefit analysis is not primarily a criticism of attempts to determine in a rigorous and quantifiable manner what the potential benefits and harms of an allocation policy are. The concepts of useless and marginally beneficial care both require such calculations (although such determinations are only approximations). Rather, the problem is what is done with the benefits and harms after they are quantified. It is the almost irresistible drive to aggregate them that must be fought.

An alternative ethic would hold that there are other essential right-making characteristics of policy than simply producing the most aggregate good, and might include the principles of autonomy and justice. I have argued elsewhere that production of good must be subordinate to fulfilling the requirements of these independent principles. [8] However, as long as autonomy and justice are viewed as at least relevant moral considerations, they will have some impact on the issue of using economic criteria to limit care for the terminally ill. Indeed, justice provides a sound basis for using such criteria, while utility does not.

Insurance Models and Justice

An increasingly familiar approach to ethical problems of resource distribution involves insurance modeling. [9] We can ask what kinds of health insurance for terminal illness rational persons would purchase while healthy. Assuming they receive the difference between the costs of care including useless and marginally beneficial care and the costs of care with these problematic health services excluded in the form of a lower premium, they would certainly exclude some care currently being provided terminally ill persons. They would at least exclude care that they judge, based on their beliefs and values, to produce no net benefit, as well as care they would refuse if they were sufficiently informed about it.

Moreover, there is some care that rational persons making insurance purchasing decisions would exclude even if it held some benefit as judged by their own values. They would exclude coverage whenever the marginal premium needed could be spent in other ways to produce greater benefit to them. Depending on the extent to which they are altruistic, they might exclude coverage when the marginal premium would be of greater benefit to other persons, particularly family members and loved ones.

Exactly what kinds of care for terminal illness would rational insurance purchasers forgo? They would almost certainly forgo care that expensive and so experimental that its probability of success was very low. They would probably forgo care that would stave off death, but leave one seriously debilitated--chronically in pain, permanently, severely impaired, seriously compromised mentally, unconscious, or vegetative. They would likely also exclude relatively nonexperimental procedures with a low probability of success. These coverages would be forgone because they are not good insurance buys. The small chance of success of expensive treatment would raise the insurance premium by an amount more prudently spent on something of greater benefit.

Rational insurance buyers would, however, be willing to purchase coverages for pain relief and other palliative care, even if it is rather expensive; basic nursing care to provide cleanliness and dignity; and widely accepted treatments for chronic illness where costs are modest.

Some proponents of the insurance model have incorrectly concluded that whatever rational, self-interested persons would purchase is what ethics requires. However, for a health insurance scheme to be ethical (as well as politically feasible), certain additional constraints are necessary.

Procedural Justice

Generally, people are free to contract with one another, and, under certain conditions, are bound by their contracts. Covenants are formed and the morality is that of keeping promises. Under special circumstances, it would be reasonable for people to come together and agree to forgo certain marginal health care when they are terminally ill. But the ethical constraints on such agreements are severe.

Present insurance mechanisms lack procedural justice. It is the nature of insurance to limit available options, and often only a single plan will be available from an employer.

A necessary (though not sufficient) condition for ethics is the fair participation of all in the decisions about what health insurance options are available. At the least, there ought to be full participation by all socioeconomic, age, sex, and racial groups. Otherwise, the insurance protection will be unfair. This suggests another guideline for health planners:

Any decisions made to place limits on health care coverage on the grounds of terminal illness must be made with full, fair, and equal participation of all in the insurance pool.

Substantive Justice

The difficulty in obtaining full and equal participation is perhaps by itself an argument against any scheme that would make terminal illness a relevant factor in deciding about insurance coverage. But even if the voices of the poor, the elderly, and the ill were heard adequately in the contracting process, it is still possible that the results would be unfair. The wellbeing of all parties must be given fair consideration for a policy to be ethical, but full and equal participation does not necessarily assure fair consideration.

Ethics involves more than contractual agreement: it requires taking the "moral point of view." [10] In this process, all persons can presume that even if they are not now members of the group of terminally ill, they one day will be. Thus in comparison with the interests of racial, ethnic, and gender groups, all can identify with the terminally ill when planning insurance coverage.

Still, there is reason to fear that the moral point of view will be lacking. While all can assume they will one day be terminally ill, not all terminal illnesses will be fairly represented in such planning. The diseases of politically weak groups may not be spoken for adequately. All rational persons participating in the process at least know they will not die of a disease of infancy. They may retain an empathetic interest in such diseases insofar as they can envision their children, grandchildren, or relatives succumbing to them, but it should not be assumed that all terminal illnesses will receive ethically fair attention unless additional moral constraints are imposed.

The constraints to be imposed are those familiar to advocates of the hypothetical contract. [11] An insurance scheme will be ethically (as well as politically) acceptable insofar as participants in the planning process an approximate the characteristics of ideal contractors. They should be as knowledgeable as possible and have understanding and empathy for the points of view of all parties.

Such a vantage point does not, of course, exist in the real world. Rather, the position functions as a heuristic device for telling us the kind of perspective planners of insurance schemes ought to adopt to the extent they want the results to be ethical.

The critical question is whether such planners would accept limits on terminal care when that care is perceived by the patient or a surrogate to be somewhat beneficial, but is very expensive in comparison with the net benefits. As such care will offer very little benefit and those same resources could bring much greater good in other ways, it seems intuitive that rational persons assuming the moral point of view (who were not already terminally ill) would prefer the greater benefit while not terminal and would opt for some limits on terminal care. Thus:

In order for limits on terminal care to be just, they ought to be limits that reasonable persons would accept if they did not know the probability that they would be the ones who at some point would need the care.

This conclusion should be compatible with utilitarian positions, but may be problematic on certain accounts of justice. The most important version of an independent theory of justice, supported by maximum theorists like John Rawls and by egalitarians, holds that the less well off have some special moral claims over and above those who would simply receive greater benefits from scarce social resources. The implications are that social planners taking the moral point of view would (at least prima facie) arrange social resources to benefit the least well off or to make them more equal in wellbeing relative to other groups.

On either view, the terminally ill are in a special position. They are potentially among the least well off groups. They seem to need more resources to achieve equality of wellbeing. Does this mean that the terminally ill, if they are plausibly the least well off group in our society, have claims on resources even if it would not be efficient to use the resources to meet such claims? Such a conclusion follows, assuming the terminally ill are really the worst off, but that assumption must be examined.

Determining Who Is Worst Off

One problem in determining who is least well off is trying to establish an objective basis for interpersonal comparison of wellbeing. Two very different perspectives are available for attempting such comparisons.

The Slice-of-Time Perspective. Health planners contemplating different insurance coverages might determine which groups are worst off at the present time. From this slice-of-time perspective, planners could easily conclude that the terminally ill are among the worst off. If so, an independent theory of justice will give planners at least prima facie reasons for committing substantial resources to the terminally ill even if greater good could come from using the resources on other, better off groups. Utilitarians assuming the moral point of view might opt for sacrificing the terminally ill, but those striving for justice would not.

The Over-a-Lifetime Perspective. A second way hypothetical insurance planners might identify the worst off groups is to view persons as having continuity over their lifetimes. This perspective could lead to the conclusion that those currently terminally ill are not the worst off in the society. While they are presently poorly off, over the lifespan their situation may be quite good. Others suffering from chronic, debilitating diseases of childhood or who are miserably poor may be leading lives much worse than the lives of those now terminally ill.

Which perspective is correct? For some interventions, the slice-of-time perspective seems appropriate. For the terminally ill cancer patient in excruciating agony who could be treated cheaply with morphine, or the terminally ill person in need of clean sheets and compassionate nursing support, the fact that he or she has experienced a long, happy life seems irrelevant. Rational contractors would include such interventions in insurance coverage for the terminally ill.

The answer is not so clear in considering other interventions. Does it make sense to claim that expensive resources ought to be devoted to prolonging the life of a terminally ill person who is dying comfortably and who has had a long and good life, simply because the patient insists that adding days counts as a benefit? From the over-a-lifetime perspective, such a person is not nearly as poorly off as the homeless child or the adolescent in the agony of poverty. If that is the proper perspective for assessing this kind of terminal care, then even an egalitarian position can support limiting care. Another guideline can be identified:

Insofar as the terminally ill can be seen as not as poorly off as others, justice requires that limits be placed on their care.

Assessing the Justice Argument

Several problems are raised by invokving justice as a basis for limiting care for the terminally ill. All concern the logic of the justice argument.

Two-tier Care and the Right to Trade. In an insurance model for setting ethical limits on terminal care, some but not all terminal care will be available. Would this policy simply create a market for a second tier of terminal care that the rich could buy with private funds or through purchasing insurance?

Alternatively, would it not be rational for the very poor to sell part of their terminal illness coverage in order to buy medical or other goods that they value more? Would it not be prudent for a poor person to surrender basic nursing care and cleanliness while permanently unconscious in order to have money to buy food while young and healthy?

These possibilities raise questions about whether the principle of justice can determine a single level of terminal care that should be available for all--even for those who would rather buy extra terminal care or sell some in order to have other goods. While the argument on this point is too complex to be developed in detail here, there are good reasons why, from the standpoint of justice, it makes no difference whether people sell their basic entitlement to terminal care or buy a luxury tier of care. The principle of justice requires providing opportunities for equality of wellbeing in general, not just medical wellbeing.

We could ask whether our hypothetical rational contractors would support these kinds of transactions. If someone could be a little better off by selling his terminal illness entitlement, why should he not be permitted to do so? Permitting the sale of basic entitlements in a world where resources are distributed justly does not seem controversial. Limiting the sale on grounds that the money would be spent foolishly rests on the paternalistic assumption that such persons would really be better off if they were forced to have the medical care allotted rather than something they think would make them better off.

There are, however, pragmatic, nonpaternalistic reasons to prohibit such transactions. It would be socially offensive to have to watch the terminally ill who previously sold their entitlement suffer from lack of analgesics or lie in filth. And in the real world where people will be bargaining with an initial unfair allotment of resources, it is n ot so evident that selling entitlements should be accepted.

Some might argue that the insurance planners should permit such trades whenever the lot of the least well off would be improved. Others would hold that even if the planners cannot obtain complete justice in the system, they ought to arrange at least some elements of the social practices to approximate the just society. They might choose to arrange coverage for terminal illness so that persons had those things considered basic--those things required by justice in the slice-of-time perspective--and no more.

Limits on Care for The Nonterminal Elderly

If we accept justice-based limits on terminal care, does that set up a moral logic that would also permit limiting health care on the basis of age? I am convinced that is precisely what is required. This analysis of justice provides a framework for setting age-based limits on all health care.

Recent literature has been more open to an honest exploration of such limits. [12] Daniel Callahan has argued that, based on the concept of a completed natural lifespan, life-prolonging care for the elderly should be limited to relief of suffering. Norman Daniels has asserted that people are entitled to health care necessary for species typical functioning. For Daniels, what counts as typical functioning is dependent on age, and persons over a certain age could only be entitled to minimal interventions such as palliative and basic nursing care.

My proposal provides a different theoretical basis for limiting care on the basis of age. Some people very poorly off in a given moment may nevertheless have had considerable opportunity for wellbeing over their lifetimes. Older persons generally have had a greater opportunity for wellbeing than, say, critically ill infants. In a comparison between two critically ill patients, one an infant and the other elderly, the infant has much stronger claims on resources in order to have an opportunity for wellbeing over its lifetime. Justice might entitle the infant to a much larger proportion of the resources needed to achieve health. For those resources more appropriately allocated from the slice-of-time perspective such as pain relief, we could conclude that treating the infant and the elderly person equally requires providing equal relief at the moment.

This interpretation of justice provides not only a basis for limiting certain kinds of terminal care, but also for using chronological age as a criterion for allocating health resources to the nonterminal as well. Unlike Callahan's proposal, there would be no hard-and-fast line between those who have completed lifespans and those who have not. Those just above the age of completed lifespan would have a stronger claim than those substantially above. Those just below would have substantially less claim than young persons who have had barely any opportunity for wellbeing.

Nor would this policy rest on any controversial concept of age-specific, species typical functioning, as proposed by Daniels. While Daniel's scheme seems to give persons of different ages an equal claim to the care needed for typical functioning at their age, my proposal gives persons priority in inverse proportion to their age.

When age, rather than terminal illness, becomes the basis for allocation, an additional complication emerges. Should safe, simple, low-cost curative treatments be allocated on the slice-of-time or over-a-lifetime perspective? Callahan maintains that even those who have completed their lifespans should receive such care, which seems intuitively correct but doesn't appear compatible with an allocation policy based on completed lifespan. A justice-based allocation would more easily support safe, simple, and sure remedies even for the centenarian on the grounds that these treatments should be allocated to provide equality for wellbeing using the slice-of-time perspective.

An articulated theoretical basis for deciding which care is justly allocated on the slice-of-time perspective and which on the over-a-lifetime perspective has not yet been developed. Some needs of persons are so immediate that they command attention regardless of the amount of wellbeing experienced over a lifetime. Such needs would include the relief of intense pain and suffering, basic nursing care, and perhaps interventions to provide an easy, cheap cure for an acute illness. The sense of immediateness that leads us to invest enormous resources to rescue a child trapped in a well, without regard to utility calculations or the relative wellbeing of others who could benefit from our attention, also calls for the slice-of-time perspective in allocating certain care to both the terminally ill and the elderly. At the same time, egalitarian justice can, on the over-a-lifetime perspective, explain why other kinds of care can be excluded based on terminal illness or age.

The Moral Relevance of Economics

The result of our analysis is a severe constraint on the use of economic considerations in deciding to limit care for the terminally ill. This does not, however, degenerate into the impossibly romantic claim that in matters of life and death economics can never be a morally relevant consideration. At several points, care for the terminally ill can be eliminated.

Setting such limits will require differentiating between greatest need at a moment in time and greatest need in terms of wellbeing over a lifetime. It seems clear that for some care the immediateness of the need is morally overpowering. In such cases, equality at that moment in time is what is required. Any such care for the terminally ill will be required by justice.

Other kinds of care, however, may be more appropriately assessed in the over-a-lifetime perspective. For these kinds of care, the terminally ill, in spite of their medical condition, may not really be as poorly off as others. When the members of the society planning their own insurance system from a moral point of view conclude that other groups are actually worse off in terms of their wellbeing over their lifetimes, such insurance planners should limit care for terminal illness in the name of justice.


[1] See Mark S. Freeland and Carol E. Schendler, "Health Spending in the 1980s: Integration of Clinica [1] Practice Patterns with Management," Health Care Financing Review 5 (1984), 4; J. Lubits and R. Prihoda, "The Use and Costs of Medicare Services in the Last Two Years of Life," Health Care Financing Review 5 (1984), 117-31.

[2] For a definition of terminal illness, see Ronald Bayer et al., "The care of the Terminally Ill: Morality and Economics," The New England Journal of Medicine 309:24 (December 15, 1983), 1491.

[3] Anne A. Scitovsky and Alexander M. Capron, "Medical Care at the End of Life: The Interaction of Economics and Ethics," Annual Review of Public Health 7 (1986), 59-75; Anne A. Scitovsky, "The High Cost of Dying: What Do the Data Show?", Milbank Memorial Fund Quarterly 62:4 (1984), 591-608; Lubitz and Prihoda, "The Use and Costs of Medical Services."

[4] Clark C. Havighurst and James F. Blumstein, "Coping with Quality/Cost Trade-Offs in Medical Care: The Role of PSROs," Northwestern University Law Review 70:1 (MArch/April 1975), 6-68.

[5] The Hastings Center, Institute of Society, Ethics and the Life Sciences, "Values, Ethics, and CBA in Health Care," in The Implications of Cost-Effectiveness Analysis of Medical Technology (Washington, DC: Office of Technology Assessment, 1980), 168-82.

[6] Stephen E. Rhoads, ed., Valuing Life: Public Policy Dilemmas (Boulder, CO: Westview Press, 1980); Dorothy P. Rice and Barbara S. Cooper, "The Economic Vaue of Human Life," American Journal of Public Health 57 (November 1967), 1954-66.

[7] T.C. Schelling, "The Life You Save May Be Your Own," in Problems of Public Expenditure Analysis, Samuel B. Chase, ed. (Washington, DC: Brookings Institution, 1966), 127-60.

[8] Rober M. Veatch, A Theory of Medical Ethics (New York: Basic Books, 1981), 291-305.

[9] Ronald Dworkin, "What is Equality? Part 1: Equality of Welfare," Philosophy and Public Affairs 10 (Summer 1981), 185-246; "What is Equality? Part 2: Equality of Resources," Philosophy and Public Affairs 10 (Fall 1981), 283-345; see also Rober M. Veatch, The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality (New York: Oxford University Press, 1986).

[10] Kurt Baier, The Moral View (New York: Random House, 1965).

[11] John Rawls, A Theory of Justice (Cambridge, MA, Harvard University Press, 1971).

[12] Daniel Callahan, Setting Limits: Medical Goals in an Aging Society (New York: Simon and Schuster, 1987); Norman Daniels, "Am I My Parents' Keeper?", Midwest Studies in Philosophy 7 (1982), 517-40; Am I My Parent's Keeper?: An Essay on Justice Between the Young and the Old (New York: Oxford University Press, 1988).

Robert V. Veatch is professor of medical ethics at the Kennedy Institute of Ethics, Georgetown University, Washington, DC.
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Author:Veatch, Robert M.
Publication:The Hastings Center Report
Date:Aug 1, 1988
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