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. …