By: Jonathan Evans
As the federal government rambled these past few months toward reform of our nation's broken health care system, much discussion focused on fear. In particular, concerns centered on care rationing, patients' loss of control over their care, and even the possibility of “death panels.”
Most of the attention in the media continues to focus on drama rather than policy. Many with an interest in some level of change in the current health care system have been left to wonder what is going on.
Nevertheless, the rhetoric itself and the attention given to it say something about our nation's value system. As the policy debate presumably comes to a conclusion, it may be worth considering what the discussion itself reveals about our ethical principles.
Ethics derive from a community's collective value system, or ethos. In this framework, the needs of individuals are balanced against each other and against the needs and resources of the community. Because these needs often conflict, they are best resolved by adhering to ethical principles.
Notwithstanding, the political and economic self-interests of various constituencies involved in the national health care reform debate—such as the desire of large employers to shift health care costs to the public sector or the ideological desires of others to limit government—the main moral and ethical issues for health care and health care reform in our society center on the issues of beneficence, autonomy, and justice.
▸ Beneficence: The primary ethical principle underpinning health care and the “caring professions” throughout history is this duty and desire to do good for others. Within health care, beneficence is manifest in efforts to relieve suffering; to provide assistance; and to prevent, treat, or even cure illness and disease. In the context of the ongoing health-reform debate, beneficence is the reason for assuring people access to care. In the context of economics and politics, access to care depends on its cost and availability and consequently on insurance (or lack thereof) and other economic factors.
Beneficence and health care economics also infuse attempts to ensure, monitor, and continuously improve the quality of care. Access to quality care also is affected by labor issues, such as the number and quality of available care providers. Our ability to do good within health care is limited by human and other health care resources.
The primacy of beneficence to almost any nation's ethos is rooted in a basic belief that individuals deserve relief from sickness and suffering and that concerns about payment for care are of secondary importance. In many countries, access to health care is a human right codified in national constitutions.
In the United States, the legal right to health care is limited to emergency care for life-threatening conditions. The only group of individuals with a constitutionally protected right to health care in this country are prisoners. Just as ironically, many people who work in health care have no access to employer-sponsored health insurance, so they may have no access to the very care that they provide to others.
▸ Autonomy: Although beneficence is the primary moral basis for health care throughout the world, the importance of autonomy is especially important in the United States, where personal freedom can be more important than personal health. This right to make one's own decisions is, in this country, the basis for the right to refuse treatment (which, unlike the right to receive treatment, is a constitutionally protected right). An individual's right to refuse treatment trumps the duty of others to do good by providing health care for that individual.
The strong concern for autonomy is behind worries about “death panels” and some other recent myths. In essence, the fear is that others will decide what care an individual will or will not receive without any choice.
Others already decide. Whether, where, and for how long an individual receives treatment are strongly influenced if not absolutely determined by the possibility of reimbursement for such care. Moreover, the type and quality of care an individual receives, and where and when it will occur, are often at the discretion of individual providers, whether they are certified nursing assistants in a nursing facility or physician specialists in a large medical center. All of these factors are influenced by the practitioners' workloads, attitudes, experience, and personal biases—hardly the textbook definition of autonomy.
There are other significant limits to autonomy. It is one thing to have the right to make a choice, but it is quite another to be given a choice to make. The right of autonomy does not automatically confer any power. Nor does it guarantee a person access to what he or she wants. In the United States, to get what you want in health care generally means you have to be able to pay for it. It also requires the cognitive and neuromuscular ability to communicate one's choice, as well as the physical and intellectual ability to seek care, get to where it's delivered, and navigate complex systems—abilities that illness often degrades.
Then there's the fact that the autonomous wishes of one individual may come into conflict with the autonomous wishes of another. Here, the principle of justice is important, as it may impose further limits on or even contradict autonomy.
▸ Justice: Within health care, justice—the fair allocation of scarce resources—is concerned with access to care and treatment. Justice requires that both the benefits and burdens of care be shared by all members of a community. A just health care system assumes that everyone is inherently and equally worthy of the care they need. The current debate about universal access to care is, therefore, a debate about justice. But the principle of justice also is manifest in the fears that individuals have about possible health care rationing by the government. Those who are worried about the government limiting care are concerned, in so many words, that justice will trump autonomy.
Sadly, health care rationing is an everyday fact of life in the United States, but now it is not necessarily based on justice. Rationing may happen whenever the demand for something exceeds the supply and an individual or group controlling the supply decides that the resource has to be shared or conserved.
U.S. health care rationing is based on real or perceived scarcity. It is done by entities such as blood banks and organ transplant networks. Even emergency department triage is a process in which access to care is rationed according to the perceived urgency of need and the scarcity of labor to provide care. Individual providers and their employers control health care resources and decide how much or whether any of those resources will be provided to individual patients.
Current rationing is not necessarily consistent, fair, or systematically applied. Health care financing and business decisions affect staffing in hospitals and nursing facilities, availability of providers, how much time and care will be given to individual patients, and the quality of that care.
It is very difficult, if not impossible to improve, monitor, or even measure the quality of care if access to that care is limited and the kind of quality of care provided is affected by factors other than what people need. Thus justice and quality are linked.
Conflicting Principles, Interests
As already mentioned, beneficence may conflict with autonomy. Both these ethical principles also might conflict with justice. The interests of payers, employers, providers, and patients may conflict with one another.
At times, it can be difficult if not impossible to see beyond one's own need. Much of the fear and anger expressed by individuals lately is a reflection of this very thing. It also is unrealistic to expect health care businesses to always put the personal and economic interests of patients first. Likewise, how providers get paid affects access to care, the extent of beneficence, and the power of individual patients to make autonomous choices.
Both fee-for-service and managed care systems have incentives and disincentives for businesses or providers that may even run counter to the interests of individual patients. The extent to which one regards any particular system as just or good also depends upon how much one values autonomy versus beneficence, how much that individual feels responsible for sharing the burden of limited resources, and how the person preferentially values the various tasks and responsibilities of government, among which health care is but one.
The intensity of the emotional reaction across the country to any proposed health care reform has caught many people by surprise. The debate thus far has been anything but logical. It probably is worth remembering that when faced with a personal health care crisis, such as an unplanned nursing home placement, individuals may react emotionally rather than logically. This may frustrate care providers and occasionally infuriate patients and families who perceive an apparent lack of emotion from providers as cold, uncaring, and uninformative.
Whatever the outcome of the national political debate on health care reform, as providers, we have to remain true to our values in order to maintain and sustain our integrity and that of our professions. Mostly, that boils down to doing good, striving to do better, respecting others and their wishes, striving for fairness, and making an effort to improve systems of care locally, regionally, and nationally.
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