Consumer expectations and access to health care.

• Author: Francis, Leslie Pickering
• Position: The Law and Policy of Health Care Rationing: Models and Accountability

CONSUMER EXPECTATIONS AND ACCESS TO HEALTH CARE

INTRODUCTION

Americans--some of them at least--enjoy a remarkable range of expectations about their health care. They have come to rely on free choice of physicians, on autonomy and the doctrine of informed consent to care, on the belief that they can get the best care money can buy, on the assumption that resources will be available to pay for that care, and perhaps even on the hope that death can be cheated for at least a little while. But these expectations are fragile for those who have them, and they are not shared by many others. As the 1992 presidential campaign gathers steam, polls indicate that even the affluent are worried about whether their relatively secure access to health care will continue and what they will do if it does not.(1) Other Americans--the more than thirty-one million who lack health insurance(2)--continue to have few if any expectations about health care at all.

Changes in American health care are certain to disappoint some expectations, modify others, and create entirely new ones. Some of these changes are already accelerating, as union contracts are renegotiated with diminished health benefits, as major insurers pull out of entire markets, and as states such as Oregon propose significant revisions in their Medicaid programs or seek more ambitiously to fund care for greater proportions of their residents.(3) If any of the proposals for national health policy bear fruit soon, further changes are likely.(4)

Expectations appear with remarkable frequency in discussions of the current state of American health policy; the contributions to the first section of this symposium are no exception.(5) Sometimes, expectations are regarded sympathetically. A standard argument for construing ERISA as strongly protective of the health benefits of retired workers, for example, is protecting the expectations of retirees.(6) More often today, however, high levels of expectations about health benefits are portrayed as unrealistic and uneconomical. From the automobile industry to public utilities, the high costs of health insurance are a standing recessionary theme.(7) Critics of American expenditures on technology and on intensive care at the end of life blame unrealistic expectations about the power of health care to conquer death.(8) British commentators have long contended that Americans expect too much from health care generally and technology in particular.(9)

Nonetheless, despite their salience in policy discussions, expectations have received little direct examination. This Article is an attempt to further discussion of the moral and legal significance of some of the American consumers' most important expectations about their health care. Do any of these expectations matter morally? If so, which ones matter, and why? Or, are all expectations about access to health care simply unrealistic in today's world of spiralling health costs? Are expectations about access given legal protection, by statute or the common law of contract? If so, do the legal protections correspond even roughly to the moral picture about expectations?

This Article begins with an outline of the variety of consumer expectations about health care. It then presents some basic elements of a moral theory of expectations, and applies the theory to several examples of expectations about the level of care that will be funded and about the continuation of current funding arrangements. Summarized briefly, the conclusion is that the strongest moral case can be made for expectations of continued access to moderate levels of care when they have been encouraged by employers or insurers. The Article then turns to an examination of the current state of legal protection for health care expectations. As the costs of meeting even modest expectations of workers or retirees continue to escalate, these expectations increasingly are disappointed. Plant closures and industrial bankruptcies illustrate the burdens imposed by retiree benefits on some employers, and the resulting fragility of those benefits.(10) Under ERISA in particular, the Article then argues, benefit protection has been limited to written contractual specifications. The result is legal protection of contractually based expectations, even if they are quite generous, but not protection of other expectations for which there is arguable moral support. This discontinuity, the Article concludes, provides a rich source of arguments for discussion of universal health policy in the United States. On the one hand, failure to meet legitimate expectations should be a matter of public concern. On the other hand, if some current expectations are unreasonable, public dialogue can help provide both a justification for decisions not to meet these expectations, and a context that shapes these expectations in more reasonable directions.

1. EXPECTATIONS ABOUT HEALTH CARE

   "Expectations" are beliefs about the future upon which people rely in structuring their lives. Many different kinds of expectations are characteristic of contemporary American health care. Although the term "expectations" appears frequently in discussions of physician-patient relationships and of access to health care, there has been little systematic study of the actual expectations of either patients or physicians. Some studies in the social psychology literature have focused on expectations as they affect particular physician-patient encounters. For example, Russell Jones has studied how patients' expectations about symptoms and diseases affect their decisions about whether to seek care,(11) and Peter Ditto and James Hilton have examined how physicians' expectations affect diagnostic decisions and how patients' expectations affect compliance with therapeutic recommendations.(12) These studies, however, do not consider the extent to which economic factors contribute to the decision to seek treatment or, more generally, the extent to which both physician and patient expectations are shaped by health care organization and funding. Consequently, the descriptions of expectations which follow are somewhat speculative. They are postulated as characteristic of the kinds of expectations that patients and physicians are likely to have within the current American health care system. For the purposes of this Article, they can be viewed as hypotheses that warrant further empirical study.

   First, patients have a variety of expectations about their relationships with physicians. For some patients, these might be called "autonomy expectations"-that is, expectations of care that responds to their choices.(13) For others, they are expectations of paternalistic care-that is, of care that is aimed at protecting their best interests. These expectations frequently arise from experience within the health care system-for example, through the establishment of a particular provider-patient relationship of an ongoing and relatively longstanding nature. Expectations about provider-patient relationships might include: that one will be able to continue to receive treatment from the same provider, that one will be able to choose other providers, or that one will be able to seek referrals to specialists. At least some expectations of continued care find legal support in the doctrine that physicians may not abandon their patients.(14) It is important to note the extent to which these expectations are rooted in experience with the current system of health care in the United States; by comparison, patients in the United Kingdom generally do not expect to be able to shop around for other general practitioners or to seek specialist care on their own.(15)

   Patients may also have expectations of autonomy or paternalism about the extent and nature of shared decisionmaking within provider-patient relationships. As the doctrine of informed consent has gained wider currency, patients may expect to be informed about risks and alternatives to proposed care, and to be educated about the risks of not seeking care.(16) Patients who have gone to the trouble and thought of executing advance directives or specifications about organ donation may expect that their wishes will be honored by providers and by family members.(17) At the same time, from a more traditional perspective, patients may expect caring and paternalism.(18) Many patients probably also expect confidentiality and undivided loyalty on the part of their health care providers.(19)

   Another set of expectations that patients have might be termed "expectations of the likelihood of success." Patients may have expectations about what medical care will be provided and what that care can or cannot do for them. American health law has fostered expectations through written contracts, for example, a plastic surgeon who promised a beautiful nose to an aspiring actress,(20) or a surgeon who promised an easy cure for a peptic ulcer.(21) More frequently, expectations about what care can do remain unarticulated premises in the provider-patient encounter. Commentators often note that Americans expect a great deal from technology, in contrast with the British who remain far more skeptical about what technology can achieve.(22) Other patients may expect that nothing can be done for them and delay seeking care as a result; in some lower socioeconomic groups, for example, the tendency is to regard aches and pains as an ineluctable part of the aging process rather than as symptoms worthy of medical attention.(23)

   Expectations about available medical treatments and likely outcomes come from a potpourri of sources: popular culture, gossip, magazines, self-help books, and other mass media. They also come from the medical profession itself, as new interventions such as coronary bypass surgery or, now, balloon angioplasty are heralded publicly as dramatic improvements in care. Expectations also come secondhand, as patients share information about what their different doctors have told...