Portal de Periódicos da CAPES

Distributive Justice and Personal Responsibility for Choices About Health

2006; American Association of Critical-Care Nurses; Volume: 15; Issue: 1 Linguagem: Inglês

10.4037/ajcc2006.15.1.96

1937-710X

Lisa Day,

Patient Dignity and Privacy

Three years ago, I had a serious mishap while riding my bicycle. I was out with friends enjoying a casual ride on a lovely fall day when I hit a bump in the road that sent me flying about 30 feet forward. I hit the asphalt hard enough to break several bones and sustain a concussion. Several surgeries later, and thanks to excellent emergency, nursing, medical, surgical, and rehabilitation care, I have returned to my productive place in the social structure.The tactless question I want to ask related to this event is this: Did justice require that I receive the treatment I did? This episode cost my medical insurance, costs they passed on to other customers in the form of higher premiums. In addition, it necessitated my occupying a hospital bed and taking the attention of physicians, nurses, and other therapists, all arguably limited resources, for the first week after the trauma, and for another week after spinal fusion surgery, I took up a critical care bed.I recovered relatively quickly and, as far as I can tell, completely. Even if justice did require I be provided the healthcare resources I used for this short time, how long could I have stayed in the hospital before care and treatment could no longer be justified? Does it matter that I probably was careless in riding my bike at more than 30 miles per hour down a 17% grade? What if I had not been wearing a helmet (I was) or if my bike was in dangerously poor condition (it wasn't)? What if I did not have health insurance? What if I were unable to return to work or unable to regain consciousness?These are questions we hear asked nearly every day, in one way or another, in critical care units. In my story, replace broken bones with chronic heart failure or liver failure, and careless bike riding with dietary indiscretions or alcohol abuse. These are questions in the realm of distributive justice or resource allocation, and the discussions that surround them often assume a place for the evaluation of personal responsibility for health in the estimation of the rewards or burdens each individual deserves. What influence should personal responsibility for health play in the distribution of healthcare resources? I want to explore the background of one common understanding of distributive justice in healthcare and to open up a discussion of what choice and responsibility might mean in the context of the social space of the United States in the 21st century. Ultimately I will make an argument for an alternative understanding of choice that I think might better sustain our practice as compassionate healthcare providers.One proposed understanding of justice is as fairness in which like individuals in like situations are afforded the same benefit and burden. In his classic work, A Theory of Justice, Rawls1 introduced the idea of fairness as the basis for discussions of social justice. Fairness, in Rawls' well-known argument, is explained as equal treatment of all individuals regardless of position. In order to develop a social contract that adheres to this, Rawls introduced the original position or "veil of ignorance." In a society made up of individuals in which each is interested in his or her own success but disinterested in the success of others, rewards and burdens ought to be distributed on the basis of rules arrived at while individuals do not know what position each will ultimately occupy. Going back to the example of my bicycle crash, participants in the veil of ignorance would not know whether or not they will be a person who enjoys riding a bicycle downhill at high speed. Thus each will be motivated to write policies that provide at least emergency medical services in the event of mishap (and also, I might add, that require the roads be kept in good repair!). But they might not be motivated to provide extravagant, long-term services because they could as easily be someone who lives a cautious life and it would be unfair to burden society with this kind of responsibility. Thus Rawls' theory of justice applied to healthcare requires that each individual be given a fair share of a reasonable range of opportunities available in society for health maintenance and improvement.2,3As Rawls' theory illustrates, justice requires that individuals involved in a society share a grounding notion of good that can then be drawn on when formulating schemes of distributive justice. Adhering to rules of distributive justice in turn helps the society better conform to the constitutive notions of absolute justice it holds.4 Underlying Rawls' plan for distributive justice is an understanding of absolute justice as equality. The veil of ignorance is intended to encourage individuals to take steps to correct inequalities that are in place because of chance. Rawls' theory matches a liberal ideal that disregards what is understood as the accident of social position and status in decisions about resource allocation.Rawls' theory of justice has been appealing in healthcare ethics because it corresponds to the strong good held by most healthcare providers of offering care and treatment to those who demonstrate a need regardless of their behavior or socioeconomic position. In addition, some have said that the desire to hold individuals accountable for choices that affect their health is disproportionately applied to those who engage in what are thought to be socially unacceptable behaviors. "Many conditions requiring expensive medical treatment are caused by behaviors that are socially accepted. Thus singling out socially disapproved behaviors as less deserving of treatment reflects social prejudice rather than logic."5(p102)In another view, those who take issue with Rawls' theory because it does not directly account for contribution or personal responsibility are drawing on a notion of goodness with deep roots in US history. It is a commonly understood facet of capitalist democracy that reward should be based on one's contribution. Hand-in-hand with this understanding of reward is the idea that burden should take into account one's personal responsibility for any bad outcome. If I throw a rock that breaks my neighbor's window, I should bear the burden of replacing the window since I chose to throw the rock. It would be unjust to expect someone else, or society as a whole, to take responsibility for replacing a window I was responsible for breaking. Similarly, if I hurt myself in a bicycle crash, I should bear the burden of my injuries because I chose to ride a bike on that road at that speed. This is especially true if I am a repeat offender. If I get on the same bike, ride down the same hill at the same speed and crash again, I am even more responsible because this time I was intimately familiar with the potential consequences (just so my family and friends can breathe a sigh of relief, I have no intention of doing this). So we can describe the person with chronic heart failure admitted through the emergency department repeatedly for treatment of pulmonary edema associated with a high-sodium diet. She has been down that road before, yet chooses to go there again.When confronted with a bicyclist lying in a bloody heap in the road, or when confronted with someone in the emergency room who is struggling to breathe, healthcare providers appropriately are called to respond with compassion and offer help. It is only further along in the treatment trajectory when we begin to hear the doubts and questions: how many times are we going to have to do this? Is it right to keep supporting this person's bad choices by rescuing her time and again? What is my responsibility as a nurse or doctor? Questions like this point to how accounting for personal responsibility and the just allocation of burden in healthcare creates a tension in the practice of healthcare providers; the tension represents a conflict of competing goods. We want to respect absolute negative freedom, the right to noninterference, regarding personal life choices and the pursuit of one's own understanding of well-being. We also want to deny a corresponding right to be rescued from the consequences of one's chosen behaviors. The conflict arises when we are confronted with the individual in need but also feel pulled to consider how providing care and treatment to this individual might create an unfair burden on healthcare services and on society in general.The tension I describe is embedded in an atomist view of society in which social life is seen as collective, and in a view of persons as authentic creators of individual self-identity who are completely and radically free to choose among options.4,6,7 An atomist view describes society and social life as made up of a collection of separate individuals who come together only when and because it is mutually beneficial to do so. Society and social space do not exist in this view except as an adding together of individuals into a collective, and goodness does not exist for society as a whole but only for each separate individual who makes up the collective. Compounding the atomist understanding of the role of individuals in society are notions of authentic individual identity and radical freedom that say we have an infinite number of choices open to us limited only by our own personal and individually determined capacities.7 At best, we all always have the capacity to rationally weigh alternatives and decide on our actions, and because of this, we are expected to be accountable for the outcome.An atomist view of society as made up of purely rational individuals able to calculate the risks and benefits of actions and choose with radical freedom overlooks society's role in creating the choices that are available. No individual exists in isolation, removed from the constraints of social and historical space; radical freedom does not exist. Instead, we enjoy situated freedom in which only certain choices appear at any given time. Some of these choices have unavoidable consequences. For example, we all know the damaging effects on health of overindulgence in fast food—but the fast food drive-through may appear to be the only alternative for a wage-earning single parent. The choices available in this situation, and in many other situations in which decisions affect health, are constrained by socioeconomic factors and promoted by the availability of bad options that are a basic part of the social structure in the United States.Thus the idea that the health consequences of individual choice create an unfair burden on society is misguided. The social construction of available choices is something for which we all are responsible to a certain extent. The connection between the individual and society is inextricable, and individuals derive benefits as well as burdens from social involvement. These benefits are what Taylor6 calls irreducibly social goods—for example, the existence of alternatives from which we are able to choose. These kinds of goods exist because our society exists as it does, making it impossible to disconnect the benefits from the burdens. Thus in some way, we all share responsibility for the ill health endured by individuals, even if it does seem the illness is a product of the individual's free choice.