Ethonomics:  The Ethics of the Unaffordable FREE

Most western countries face difficult ethical problems as they try to provide medical services. Whether they run medical systems as socialized as those of Sweden or as free market–oriented as those of the United States, they face similar difficulties. Health care workers (all those involved in clinical care) complain (in varying degrees) of overwork, political interference and constraint, external controls by third parties, loss of collegiality, excessive bureaucracy, vilification by the media, and increasing or steadily excessive litigation. Patients and their families complain (again in varying degrees) of lack of care in a commercialized system, inequity of distribution of and access to services, long waits for so-called elective surgery, and short times in care for illness. Politicians complain of the costs of health care, the resistance of health care workers to change, and the habit of "shroud-waving" that health care workers indulge in to protect their territory when under attack. Media writers and broadcasters have established a small industry of productions that attack contemporary medicine.^1- 4 The fact that the same complaints are heard in the United States, the United Kingdom, Canada, Sweden, Australia, and New Zealand suggests that the problems that give rise to them are global. It also suggests that no one has found a solution to them.

Medicine has been, in a sense, smothered in its own success. Science and technology have revolutionized the practice of medicine even since the days described by Lewis Thomas in his book The Youngest Science.⁵ Writing of his father's time as a general practitioner, Thomas noted how the community awarded respect to the local practitioner for his learning and his motivation, even though his armamentarium of successful treatments was relatively small. Today, respect and trust have been seriously eroded, even as the therapeutic armory has increased dramatically. The dramatic advances in surgery and diagnostic technology were unthinkable even to the great pioneers of modern surgery 150 years ago, one of whom predicted that "the abdomen, the chest, and the brain would be forever shut from the intrusion of the wise and humane surgeon."⁶ Cardiac surgery, transplantation, radical cancer surgery, arthroplasty, computed tomographic scanning, magnetic resonance imaging, positron emission scanning, lasers, and so on—we have increased our ability to cure and to palliate beyond the dreams and aspirations of our surgical fathers. Yet our public is not entirely grateful, our political masters are tightening their controls, and our miracles are not freely available to everyone who wants or needs them. As we promise more, and seek our reputations in those promises, we seem to incur more controls, more litigation, more hostility, and less satisfaction from our medical practice. Many of us gladly see our children take up other careers.

Partly this comes about because we promise more, and thereby attract more anger when the promise fails. It is also partly driven by an awareness that our increased capability to "care for" patients is accompanied by a decreased aptitude for "caring about" them. We have come to see the performative side of our endeavor as being more important than the compassionate involvement that earned Lewis Thomas' father the respect that was accorded to him. This is understandable. We ourselves naturally want "the best" in our own times of trouble, and by the "best" we mean the person most skilled, experienced, and knowledgeable in the condition that troubles us.⁷ If this same person is also compassionate and can care about us, so much the better, but most of us will trade some of the finesse for a high level of skill.

BUT THE PRIMACY of performative care comes at a price. The science of medicine has come to be the dominant paradigm of medicine at the expense of the values we attribute to human suffering. Being a patient can be a very lonely experience.^8- 10 We have embraced the dualism of Descartes enthusiastically, agreeing that the solid, substantial body, with its solid and substantial brain, are the concrete things with which we can legitimately deal.¹¹ These substantial things develop diseases, and when we understand those diseases, we can begin to find cures. The subjective experience of illness provides some clues to the nature of the disease, if we take an adequate medical history, but the personal values that are threatened by the illness are scarcely the concern of medicine. True, contemporary medical schools teach that one must always listen carefully to the patient, and understand his or her social context if we are to be empathic doctors. Even then, however, medical syllabuses tend to concentrate on "communication skills" as performative practices that should be observed. Following rules such as "make sufficient eye contact" and "know when to ask open or closed questions" is supposed to produce satisfactory communication. The weaknesses of these arguments have been examined by Norton and Smith¹² and by Randall and Downie.¹³

The emphases on science and performance unfortunately neglect medicine's origin as a moral enterprise. Western liberal societies, both the libertarian ones like the United States and the welfarist ones like Sweden, place a special value on individual human life, both in quantity and quality. The amount of money spent on health services reflects this value, however the expenditure is raised. The United States spends about 15% of gross domestic product in its free market system; the United Kingdom spends more than 5% in its socialized system.¹⁴ These are huge amounts of money. The expenditures are sanctioned because both societies, and others like them, agree that there is something special about being human and that individual welfare is important.¹⁵ The costly services are aimed at individuals, ie, those who have acute or chonic illnesses, those who have cancer, those involved in car crashes, those who are young, and those who are old. Our societies cannot bring themselves to withdraw these services, because they provide one bulwark against the risk profile of our times. They provide each of us, and each of our loved ones, with services that (we hope) will be available to each person individually in time of need.

This focus on individual experience and individual need is reflected in our devotion to principle-based ethics, which became the dominant paradigm of medical ethics in the wake of World War II. Its formulation, particularly in Georgetown, as the 4 great principles (the "Georgetown mantra") of beneficence, nonmaleficence, respect for autonomy, and justice, reflect the recognition of the need for a set of guides protecting patients from similar abuses.¹⁶ The principles were designed to ensure that patients would be seen as ends in themselves, not means to another end. Their welfare was to be paramount. From its early days, principle-based ethics proved useful. Measured against the principles, studies such as Willowbrook (in which retarded children were deliberately infected with hepatitis) and Tuskagee (in which African American men with syphilis were left without treatment to observe the natural history of the disease) were quickly seen to be unethical. Principle-based ethics continues to be useful when the ethical issues can be modeled within the clinical dyad, the physician-patient relationship. Beneficence, nonmaleficence, and respect for autonomy clearly work well in considering the ethics of the dyadic relationship. Justice takes us into the surrounding community, but perhaps in a rather limited way. It seems to have been conceived originally as a principle that would protect each of us as individuals, by insisting on equal treatment for all, regardless of age, sex, race, or social characteristics. In that sense, justice worked best within the dyadic relationship. It could be construed in distributive terms as seeking to ensure equitable distribution of resources, but health care workers have until recently been hesitant to consider resources as a defining element in ethical relationships.

Now, however, the situation has changed radically. Resource constraints have become a part of the medical way of life. It does not much matter whether the third-party funder is government or an insurance agency; the money supply and its flow is out of the hands of providers and all but the wealthiest of patients. The cost of modern services is very, very high. External controls are inevitable. Economic concepts like opportunity cost have become important in medicine. To perform a particular transplantation may mean that the palliative care services suffer. Managers, bureaucrats, politicians, economists, insurers, lawyers, and the media have now joined health care workers, patients, and their families as legitimate stakeholders in the medical enterprise. As Christopher Jordens, MPH, on our research team in the Sydney Centre for Values, Ethics and the Law in Medicine puts it, "the contemporary medical consultation takes place in a crowded office." Principle-based ethics is not at its most comfortable with these new circumstances.

How could medical ethics respond to these new realities and responsibilities? It might deny that the interests of other stakeholders are any part of the medical transaction, and that practitioners should continue to act as though the medical dyad was the only locus of ethical responsibility. Although this is the very understandable response of many practitioners, this will simply no longer work. The availability of services, if and when we want them, can no longer be assumed. Resources are scarce, rationed, and in part controlled by outsiders. Whatever the new medical ethics may look like, it has to recognize these constraints, as well as the legitimacy of the interests of all the other stakeholders. If medical ethics is to be useful in the new century, it will also need to be reconstructed to cope with the new demands—including genetic screening and engineering, cloning, cancer screening programs, reproductive technology, and the health and welfare of disadvantaged groups. Speculation about the structure of such an ethical system is not possible within this brief article, but it may be helpful to make some suggestions about its elements.

The new ethics will make distinctive demands on the virtues of medical practitioners. Pellegrino and Thomasma¹⁷ have suggested that beneficence and fidelity to duty are the core virtues that should direct the decisions and actions of contemporary health care workers. These virtues will become increasingly important if trust is to be maintained between physicians and patients. If resources are constrained, and the optimal treatments are simply not available, beneficence and fidelity to duty dictate that the best possible treatment should be used in every case. This does not stop health care workers from being advocates for their patients in seeking the best known treatment,¹⁸ but it does remind us that medical advocacy (like legal advocacy) is a matter of what can be done, not a matter of winning in every case. We ration medical services already. We exclude the very old and the very frail from liver transplant programs, for example, and we justify these exclusions on medical grounds. Yet we know that if there were more livers to transplant, more transplant units, more beds, more money, and more people trained to do the transplantation, we would change the indications to include more of those on the borderline of acceptance. These borderlines, however, are likely to contract rather than expand, and our virtues of beneficence and fidelity to duty must develop to assure everyone of the best available treatment when "cure" is not available. While physicians tend to reject the need for an ethics that considers such decisions, the dwindling of resources has to be taken into account in medical decisions, whether we like it or not.

A refreshed view of rights and duties might be helpful. Our understanding of rights has been distorted by the polemic of the rights movement. Rights and duties exist together in a network of mutually sustaining obligations.¹⁹ Rights can be seen as more or less binding agreements between members of a society to guarantee certain protections against risk and danger, so that security and human flourishing can be guaranteed. Duties are the obligations that various members of the society undertake to provide and protect these rights. It is important to understand that rights do not exist without duties. There may not be a one-to-one correspondence between them. There is no particular agency or person, for example, who stands to guarantee my right to sing in the bath, yet that freedom can be assumed as a right unless it causes gross inconvenience to my neighbors.

Some rights (like those of singing in the bath) are simple liberties. Others are more complex claim rights. Rights vary with the times. Our rights to education, housing, and food may disappear during times of war. Furthermore, legal enactments can create or withdraw rights. Both rights and duties are, therefore, best conceived as having a prima facie status, that is, they exist "other things being equal."

Considered in this way, health care workers and their patients have both rights and duties. For physicians, there are at least 5 categories of duty. There is a duty of pastoral care, to provide skillful and ethically modulated services; there is an epistemological duty to acquire, apply, teach, and add to the knowledge base of medicine; there is a duty of collegiality, to work within a set of good relationships with one's colleagues, and with the understanding that one's actions will not bring dishonor to the profession; there is a duty to know and work within the law; and finally, there is a duty to practice health care in ways that observe principles of maintaining community welfare. This last, communitarian duty is of particular importance in times of resource constraint.

Less well defined and understood are the rights of health care workers. Clearly, they have the implicit right to take medical histories and perform physical examinations, actions that might constitute assault in other contexts than the medical relationship. Health care workers also have a right to a reasonable reward for what they do. Both these sets of rights constitute what we may call the Aesculapian rights, which pass to health care workers in virtue of their knowledge, training, skill, license to practice, and the ethical grounding of their profession.

There are also a group of rather more contentious rights that may reasonably be claimed by health care workers. The first is the right to expect free and honest disclosure of all that is relevant to the problem with which the patient presents. They should also be able to expect a reasonable degree of compliance with the treatment agreed upon between health care worker and patient. Given the values of the liberal communities in which we live, health care workers might also claim the right to expect honest presentation from their patients. This implies that people should only present for health care with problems that they honestly perceive to be problems of illness. Health care workers should also have the right to expect collegial support from their colleagues, provided they themselves act within the reasonable bounds of professional behavior. Finally, and most important, a physician (or anyone offering clinical care) should possess the right to his or her own conscience.

The rights of patients are more clearly defined. They obviously have rights of access to health care. They also have a right to expect skilled treatment from the health care workers they consult. Furthermore, they have a right to expect that the actions and decisions of health care workers will be firmly grounded in professional ethics. By the same token, however, patients may be seen to have some duties.¹⁷ The duty of honest disclosure of all relevant material seems a reasonable first duty. Compliance with treatment within the limits of autonomous choice also seems reasonable. Finally, patients can be reasonably asked to assume a duty to accept the limits of health care, both in its capacity to cure and in its availability.

Restoring the fundamental idea of a balance between rights and duties will be of central importance in the evolution of a new, contemporary ethics. Quite clearly, examination of ethical issues under such a model of rights and duties will not solve all contemporary ethical problems. It will, however, remind us of some of the important issues that can remain untouched by principle-based ethics.

A third feature of the new ethics will surely be its need to determine and reflect community values. It is, after all, the community that bears the ill effects of resource constraints. Until health care workers, and, more important, those who determine health policy know something about community values and their priority, there can be little logic in policy making or resource allocation. No one can pretend that finding and ranking community preferences, needs, and priorities can be an easy task. Nevertheless, it cannot be dismissed as impossible or even as too difficult. Whatever may be said for or against the Oregon Project,^20- 21 it did at least represent a sincere attempt to determine and rank community priorities in health care. Its failure should not blind us to the fact that a legislature could undertake such a project.²² In Oregon, the attempt was made to determine and rank priorities by community consultation in many locations. The Constitutional Convention in Australia in 1997 represented another attempt to achieve the same ends by using representation as a means of insight into public opinion. Referenda have been used in Denmark to establish some simple preferences. Exercises of this kind produce a kind of discourse ethics, as described in detail by Habermas²³ and others.²⁴ For Habermas, the ethical imperative is generated by discourse amongt relevant stakeholders, rather than simply representing the values of those who make policy or provide services. There is a considerable body of literature dealing with methods for managing discourse of this kind. Those who wish to read further in this field will find helpful material in the work of Alexy,²⁵ Grice,²⁶ and Devlin.^27- 28 Although the details of the analyses are different, all agree that speakers in any discourse should work with agreed definitions of the terms used, should speak clearly and to the point, and should respect the rights of others to put their own consistent views. Gray²⁹ and Arrow and colleagues³⁰ have dealt in great detail with methods to resolve conflicts that arise because of ideological differences and differences arising from vested interests.

These methods of handling discussion are no doubt helpful, but do not deal adequately with the conceptual differences that people bring (often in good faith) to these discussions. It is not possible to examine this issue in much detail, but some idea of the problem can be gained by considering further the word "care," mentioned earlier in this article. Care is a word that exists in several domains. Primarily, it carries the weight of morality. Care can be either "good" or "bad," and health care workers are charged with a "duty of care." These are moral terminologies. It is very easy, however, for slippage to occur into a performative domain. Here, the performance of acts of care is prescribed, standardized, made into protocols, and assessed by outcomes and adherence to guidelines. While "good care" obviously needs guidelines and standards, they are not enough on their own to ensure good care. We may say that this performative kind of care is "caring for." The moral dimension, however, refers to "caring about." We can care for people by following protocols, but to cope flexibly with the needs of the ill, we need to care about them in a more strictly moral sense. Management protocols provide rules that help us to care for. Our consciences and compassion provide guides to caring about. It is not uncommon to see patients and their families make different assessments of the quality of care received from health care workers. Patients obviously seek the kinds of skill and experience expressed in care for, and can forgive some shortfall in caring about, because they are most concerned to get better. Families usually have none of the training necessary to care for. They care about, and are sensitive to any lack of caring about on the part of health care workers. Thus, when managers, clinicians and other health care workers, patient representatives, and their support groups meet to discuss care, each stakeholder may use a different concept of care in the discourse, slipping between the moral and the performative without realizing that they are unintentionally making what the philosopher Ryle has called a "category mistake."³¹

Whatever the new ethics finally looks like, it will have to recognize the reality of economic pressures and managerial constraints. This means that it will have to recognize the legitimacy of the interests of other stakeholders in health. It implies, as I have said earlier, that people as diverse as policy makers, economists, managers, and health care workers will need to understand one another and the language and values that constitute the daily activities of each group. The new ethics will need to look back at the values that ground the medical endeavor in its particular view of the importance of quality and quantity of life for each member of society, and they will need to work from a moral imperative that insists that the best care is provided within the inevitable constraints. This is a challenge likely to be rejected by many physicians. We are used to seeing ourselves as patient advocates, but we forget that advocates often advise what the client does not want to hear, simply because there may be no way to satisfy what the client wants. In recognizing that the whole community has a legitimate stakeholding in health and medicine, the new medical ethics will inevitably develop a significant communitarian base. Collaborations between policy makers, economists, managers, health care workers, and their support groups may lead to some kind of progress. At present, an adversarial system seems to prevail between those who provide and receive health care and those responsible for health policy and funding. Planning of services needs to recognize that service proliferation cannot go on forever. Similarly, medical research needs to be planned with the understanding that very expensive advances may never be available to many of those who need them. The new ethics, whatever its final form, will have profound effects on all branches of health at the levels of health policy, health care delivery, and health research.

Corresponding author: Miles Little, MD, MS, FRACS, Centre for Values, Ethics and the Law in Medicine, Building D06, University of Sydney, Sydney NSW 2006, Australia.