A classical-liberal response to the crisis of bioethics.

• Author: Hall, Lauren K.
• Position: Essay

Motl Brody, a twelve year old Hasidic Jew, died recently in Washington. During his last days, his life and death were the subject of intense media scrutiny, judicial proceedings, and bioethical commentary. His transition from life to death was marked not by the private mourning of friends and family, but by cost-benefit calculations and legal wrangling. The legal, economic, and bioethical considerations are symptoms of a larger conflict between how religious communities and medical science handle the difficult business of death. More than an end-of-life decision, however, Motl's death reflects a crisis in modern bioethics, a field that has lost its focus and has forgotten ancient lessons about human power and limitations.

There is no agreed-on time of death for Motl. His brain died on November 4, 2008, according to doctors, but his heart and lungs continued to pump with the help of a ventilator and numerous drugs until November 16. Because his brain had died, the medical community declared him dead. Because his heart and lungs continued to function, the Orthodox Jewish community believed him to be alive. This conflict over definitions of life and death resulted in legal and ethical struggles that occupied his family and doctors for the last two weeks of his life. Doctors at the hospital asked to be allowed to take him off life support because he had absolutely no chance of recovery, and by some accounts his brain was actually decomposing. His parents, however, wanted the doctors to wait until his bodily systems as a whole shut down. The doctors, failing to convince Motl's parents, asked a judge for permission to stop treatment. No judicial decisions were made in the case, and the hospital eventually backed down, but not before the bioethics community became involved and made comments to the press that underscored how out of touch and ultimately irrelevant most of bioethics is to those who arc affected by new biomedical technology.

An Associated Press article written while Motl was still alive gives at its end a throwaway line by Arthur Caplan, the bioethics expert at the University of Pennsylvania who is often quoted in reports of this sort. Caplan believes that doctors should be able to end life support over the objections of religious parents, arguing, "Doctors are well within their rights to say, 'We are stopping.' ... I don't think medicine can become subservient to religious, spiritual or mystical hopes and beliefs concerning how to manage death." (1)

At first glance, Caplan's position may seem valid, even commonsensical. The boy's brain is decomposing, and he has no chance of recovery. Putting an end to this condition might be seen as both merciful and cost effective. Perhaps doctors really do know best; perhaps they are the impartial observers who can override parental partiality to secure a more just outcome for everyone. Yet, for many, the idea that we entrust to doctors the power of life and death over the objections of patients and their families, placing medical definitions of health and well-being ahead of other human values, is tantamount to putting absolute power into a new package.

The conflict over Motl's death is emblematic of the odd relationship that modern bioethics has with the very institution it is supposed to monitor. Bioethics, in practice, has done little more than rubber-stamp the biomedical community's decisions, coming down against biomedicine only in the most extreme cases. Although this approach is not inherently wrong--doctors may already be making the right decisions, so who needs a watchdog?--history has demonstrated the problems associated with unlimited power, whether it is wielded by government or by doctors.

The Crisis of Bioethics

Modern bioethics faces several crises, all interrelated. Roughly speaking, we may say that bioethics faces a crisis of purpose, a crisis of principles, a crisis of expectations, and a crisis of authority. In the first case, bioethics is no longer entirely sure what it is supposed to be doing. What purpose does it serve? The answer seems obvious at the simplest level: bioethics should help us identify ethical principles to control or at least influence medical decision making. In reality, the picture is much more complex. Ira Carmen (2005), a former member of the Recombinant DNA Advisory Committee, developed a "constitutional politics model" for understanding the committee's purpose and how it would make its decisions. He proposed seven different options, with the committee's members serving as the final decision makers, the interpreters of statutes, the consensus builders, the "protectors of the moral order" (2005, 19), the promoters of scientific innovation, the facilitators of scientific self-monitoring, and judges, performing ad hoc balancing tests on the various rights and duties involved. These purposes clash with one another. In some cases, they are impractical, and in others they are potentially illegitimate. Bioethics has a hard time determining whether it is supposed to be a watchdog or a judge, a proponent or a neutral observer. In the end, theorists' own political and social values enter the picture, leading to the field's odd split into "mainstream" bioethics and "conservative" bioethics. Each side typically spends time talking over and around the other rather than engaging in serious debate. Mainstream bioethicists tend to support the medical establishment or to see themselves as ad hoc balancers, whereas conservative theorists tend to see themselves as protectors of the moral order and human dignity broadly.

At least a part of this crisis of purpose is that bioethics has a difficult time finding principles on which to ground its arguments. Vague terms such as patient autonomy, physician responsibility, human dignity, nonmalfeasance, and beneficence, among others, tell us little about how to apply these principles in real-life situations. None of them is an absolute good, and although they all are very good in the abstract, their "abstract perfection is their practical defect," as Edmund Burke once commented about human rights ([1790] 1999, para. 242). Knowing that patient autonomy matters tells us nothing about what to do when a patient has left unclear directions or when he happens to be mentally disabled. These principles also make it too easy to polarize debates. Someone arguing for patient autonomy finds it easy to disregard the views of those whose primary concern is physician responsibility; those concerned with social or economic pressures and other utilitarian issues are left defending themselves against charges of callousness. In fact, all of these values deserve protection. Balancing and preserving them in tension with one another constitute the difficult missions of bioethics, missions that many bioethicists have jettisoned or ignored.

The crisis of principles ultimately causes a crisis of expectations. We as a society (and as bioethicists) see the role of bioethics in perhaps too optimistic a light. Without robust principles on which to base our decisions, it is difficult to believe that individual bioethicists or bioethics committees will ever play a large role, at least as the final authority, in informing patient care. Yet when bioethicists discuss these matters in the public eye, they, like Caplan, seem to see themselves as a final moral authority. Bioethical principles are so often ignored in practice because bioethics is necessarily a contingent, applied ethics. We cannot separate the principles from the specific circumstances in which patients and doctors find themselves. A decision to end a life in one case may be unacceptable in another similar case merely because the family is different or the amount of pain is different or the religious beliefs involved are different. Thus, bioethics needs to acknowledge that it will always be an imperfect ethics and that low expectations are perhaps both more realistic and more fruitful as a starting point for moral debate.

In part, our expectations about the relevance of bioethics are disappointed in practice because of a crisis of authority. No one is entirely sure in this brave new world who is holding the reins. The complex relationships among individual patients, families, doctors, hospitals, bioethicists, regulators, and policymakers create serious difficulties in determining where, if at all, bioethical practitioners fit in, where bioethical principles enter the debate, and where, if at all, such principles are controlling. In one compilation of essays on end-of-life decision making, the contributors come to completely different conclusions on where final authority lies (Blank and Bonnicksen 1993). For three essayists, the final decision rests with the doctors, who hold the final "moral authority" for patient care. Another author argues that the hospital and its agencies hold the final authority for end-of-life decisions, and another stresses the importance of statutory controls. The patients and their families' wishes typically come last in this analysis.

Giving patients the final authority is certainly problematic. The most commonly cited issue is the patient's lack of objectivity. Yet, in reality, we find no real pattern of patient or family abuse. The major court cases dealing with end-of-life decisions vary drastically with regard to the desires of patients and their families. In some cases, we are talking about ending life-preserving care, whereas in others the question is whether to continue possibly futile treatments. It does not seem, therefore, that patients and their families consistently choose either death or life. More probable is that patients and their families respond to their particular situations, their religious beliefs, their basic values, the intensity of pain, and the patients' quality of life, making intensely personal decisions about how to deal with death. If so, discussions of who has final authority for medical discussions...