Abstract
Healthcare in the United States is considered individualistic in nature because it tends to focus on the treatment of individuals rather than preventive medicine, which would affect whole segments of the American population. The terms individualism, collectivism, entitlement, and respect for personal autonomy are described within the context of ethically sound outcome research, policy formation, and ultimately how this impacts bariatric patient care.
Introduction
However, this raises the question of the needs of the society at large. What role does individualism have on ethically sound, evidence-based practice? This causes confusion when we consider the question of whether individual rights supersede policies and practices based on the just distribution of goods and services. Individualism, collectivism, entitlement, and respect for personal autonomy are described. These terms are presented within the context of ethically sound OER, policy formation, and ultimately how this impacts bariatric patient care. A case study approach is offered herein.
Individualism
The ethical principle of autonomy is often referred to as freedom, power, or choice. 1 Autonomy underlies the sense that the individual holds the power to choose and act on that choice. For example, autonomy is described as patients' rights to make decisions about their healthcare without their provider influencing the decision. 2 Patient autonomy does allow for providers to educate the patient but does not allow the provider to make the decision for the patient. 3 However, autonomy is not absolute. Everyone's freedom is relative to his or her general circumstances. Children, for example, along with prisoners, military personnel, and those declared incompetent, have limits on their freedom to choose and act on their own behalf. 4 The philosophy that underlies the value autonomy is individualism—the individual's control over his or her own body. The philosophy that most contrasts with individualism is referred to as collectivism, wherein survival and well-being of the group as a whole is most valued. Under collectivism, the well-being of the collective—the group—is considered more important than the individual who must sacrifice his self-interest to that of the group 5 (see Voice of a Mother).
Historical Meaning
Immanuel Kant and John Stewart Mill influenced present-day constructs of respect for personal autonomy, which flow from the recognition that all people have unconditional worth, each having the capacity to determine his or her own destiny. This imperative refers to a special kind of rule that implies the value of acting in a way that treats each person not as a means but as an end in themselves. A person's autonomy is violated when he or she is treated merely as a mean. 6 In other words, Kant says that one should not use other people to reach one's own goals. 6 People should be considered important for themselves as equally free individuals, not for their usefulness to someone else.
John Stewart Mill's philosophy with respect to the term autonomy is especially useful within the context of healthcare. By introducing the concept of entitlement, Mill further clarifies that some see conflict between the patient's individual autonomy and social justice in healthcare. Mill explains that freedom is not the freedom to have a particular healthcare good or service—such as a particular treatment or clinical intervention. Instead, he makes the claim that autonomy is freedom from having to consent to or perform an action. The patient's freedom to consent to surgery, or refuse it, is not the same as demanding surgery. The demand to have a healthcare good or service is not properly called autonomy. Hall's interpretation is that such a demand is more accurately called an entitlement, which differs from autonomy. 4
The Voice of A Mother
I worked all my life as a nurse in radiology but now am unemployed and stay at home to care for my daughter. Anita has liver failure. I just learned that her state-sponsored public healthcare may not cover the transplant for which we have been waiting. How can that be true? I can hardly believe my daughter may be denied a transplant after she has struggled with this serious illness for so long. I am just heartbroken.
Mill's position requires noninterference with, and an active strengthening of, autonomous expression, whereas Kant's entails a moral imperative of respectful treatment of people as ends rather as merely means. Although they approach the issues a little differently, these philosophers both provide support for the ethical principle of respect for autonomy. 4
Distributive Justice
The web of entitlement, individualism, and autonomy is thought to pose a threat to social justice in healthcare or, at least, to the just distribution of healthcare goods or services. Many Americans are concerned about the conflict between individual autonomy and social justice in healthcare. Some envision a conflict between the freedom of the patient to choose a certain expensive treatment, especially if that treatment would then unjustly deny resources to another person or several persons. For example, can Americans justify an expensive experimental treatment for one person over providing vaccinations for many people? Or metabolic surgery for several teens while denying health, wellness, and nutrition programs for an entire school district? (See The Oregon Basic Health Services Act). As it appears, some would argue, the individualistic nature of modern medicine could lead to disparity among those receiving healthcare.
Kinsley argues that modern medicine is strongly individualistic because it tends to locate or concentrate on disease in the individual rather than within the context of a wider physical or social environment, thus avoiding prevention. This influences allocation of healthcare resources. One could argue that unlimited amounts of money and energy are invested in highly technologic treatment programs while relatively little effort is given to study or treat environmental causes of chronic diseases. In this sense, much of modern medicine concentrates on the curative nature of individual treatment instead of preventive medicine that would affect whole segments of the population. 7
Implications in Outcome and Effectiveness Research
Outcomes research seeks to understand the end results of particular healthcare practices and interventions. Further, the goal is to create practices that strive for reproducible results. Historically, researchers have relied primarily on traditional quantitative measures such as laboratory data, surveys, and more to assess individual responses to care. Researchers have discovered, however, when these are the only indicators measured, many of the outcomes that matter most to patients as individuals or members of groups are missed. Hence, the introduction of qualitative outcomes research, which measures indicators such as experiences with care. 8 Despite this important first step, outcomes research may want to look at ways to affect large segments of the population properly … examining the collective benefits of therapeutic intervention.
Outcomes effectiveness research may serve as one such method. For example, OER evaluates the impact of healthcare, as well as broader programmatic or system interventions on the health outcomes of patients and populations. 9 OER may include evaluation of economic impacts linked to health outcomes, such as cost-effectiveness and cost utility. OER emphasizes health problem or disease-oriented evaluations of care delivered in general, real-world settings, multidisciplinary teams, and a wide range of outcomes, including mortality, morbidity, functional status, mental well-being, and other aspects of health-related quality of life. OER may examine a range of primary data-collection methods and secondary or synthetic methods that combine data from primary studies. 10 OER has a tendency to examine the collective benefits of an intervention.
The challenge to bariatric nurses is to balance methods of outcome research in such a way as to meet the collective needs of the population—rethinking the notion of individualism—without discarding the value of the individual. For instance, consider the Center for Disease Control Task Force on Community Prevention Service, which concluded that there was not enough evidence to support school-based programs for obesity prevention. This study was not alone in its disappointing findings. 11 However, most bariatric nurses and members of the greater community would argue that educating children in an age-appropriate manner about healthy activity, foods, and weight simply makes good sense. Therefore, perhaps, rethinking the approach to chronic conditions—both childhood and adult obesity—is in order. Further, this raises the question of how this information influences public policy formation.
Implications in Public-Policy Formation
Pathways, 12 CANFit, 13 and Healthy People 2010 14 are a few examples of public-policy efforts in the interest of creating a healthier environment. The long-term success of these efforts may depend on rethinking the individualistic approach by looking at the broader, larger picture. For example, what social, emotional, or physical diagnoses correspond with weight and weight-related co-morbid conditions, and how can these situations be prevented or managed in a way that would subsequently reduce the prevalence of predictable chronic conditions? Or, what environmental factors contribute to obesity, and should resources be allocated to control for these environmental factors? As mentioned earlier, a number of very expensive studies examining school-based studies suggest little to no evidence to support the need for school-based programs for obesity prevention.
The Oregon Basic Health Services Act
In the late 1990s, Americans living in the United States spent more than $733 billion, or 12.3% of the Gross National Product (GNP), per year on healthcare. This was double what Americans spent on healthcare seven years prior. Healthcare was recognized as one of the fastest-growing major items in the federal and state budgets. Governments, businesses, and individuals were having difficulty finding resources to meet the increasing costs of healthcare. As a result, the healthcare delivery system has cut costs by denying some people access to adequate healthcare services. At that time, an estimated 37 million Americans were uninsured. In addition, the number of people covered by government-sponsored and employer-sponsored insurance had decreased, and skyrocketing costs were thought to lead to further reductions in coverage. To cope with the rising number of uninsured residents and to control skyrocketing costs, the State of Oregon passed the Oregon Basic Health Services Act (OBHSA). 15 In 1987, legislators in Oregon no longer allowed Medicaid funding for soft-tissue transplants. They believed that the cost of performing approximately 30 heart, liver, and bone marrow transplants was equivalent to the cost of providing regular prenatal care to approximately 1,500 pregnant women. At the time, legislators felt they could not pay for both, and therefore chose the latter along with certain trauma services, senior care, and intervention for other special populations. In terms of prenatal outreach programs, at the time it was thought that this decision would double the lives saved per dollar over transplant programs. 16 This was simply one example early OBHSA employed in an attempt to reduce state-sponsored health-related expenditures. Later, however, OBHSA was referred to as a skeleton package, which failed to provide basic services to the most vulnerable and underserved. Since that time the state of Oregon has revised the concept of universal access and healthcare to allow for certain transplants, and continues to assess opportunities to balance the benefit and burden of healthcare. 17
Discussion
Common sense, clinical experience, being a good person, or having good intentions are qualities that do not guarantee a nurse will respond appropriately to an ethical dilemma, especially one of this magnitude. 18 If the dilemma is purely a communication dilemma then a model for communication skills is helpful. 19 However, an ethical dilemma is defined as a situation where two or more equally unacceptable options are available and a decision has to be made. If one of the decisions is clearly a good, right or best choice, then an ethical dilemma, by definition, doesn't exit. 20 This is always unsettling, and explains the reason for heated emotional ethical debates. There is never a good, right, or better choice. For instance, nurses are neither satisfied with denying women prenatal care nor comfortable denying Anita a soft-tissue transplant. To that same extent, bariatric nurses are neither satisfied with denying a few teens metabolic surgery nor comfortable denying district-wide age-appropriate physical activity, nutritious eating, and health education for parents and children. These pose ethical dilemmas because denying care to any of these groups or individuals is unacceptable, but a decision has to be made.
Conclusion
A number of ethical questions emerge from this debate. Of importance to bariatric nurses, who hold a powerful voice in OER and policy formation, is to consider the most meaningful options for allocation of scarce resources for the prevention and treatment of weight-related challenges and other chronic life-threatening conditions.
Footnotes
Disclosure Statement
No competing financial interests exist.