CHAPTER 1
HARSH MEDICINE
âMy motherâs doctor is refusing to give her antibiotics,â the woman caller told me in an urgent voice.
âWhy is he refusing to prescribe antibiotics?â I asked.
âHe says that sheâs ninety-two and an infection will kill her sooner or later. So it might as well be this infection.â
As disturbing as this call was, as outrageous the doctorâs behavior, I wasnât particularly surprised. I have been receiving such desperate communications with increasing frequency for the past two decades. Not every day, not every week, but with sufficient regularityâincreasing in volume since this book was originally publishedâto become very alarmed about the state and ethics of American medicine, and its impact on culture.
Among the more disturbing calls I received came from John Campbell, whose teenage son, Christopher, had been unconscious for three weeks because of brain damage sustained in an auto accident. The boy had just been released from the hospital intensive care unit when he developed a 105-degree fever in the hospitalâs âstep-down unit.â Campbell asked the nurses to cool his fever. They replied that they needed a doctorâs orders. Campbell asked them to obtain it, but Christopherâs physician was out of town and the on-call doctor said no. âIt was an evening of hell,â Campbell says. âMy sonâs life meant less than hospital protocol. When the doctor refused to order treatment, the nurses said that there was nothing they could do.â
Campbell desperately tried to reach the doctor on call personally, but he refused to take Campbellâs phone calls or return his increasingly urgent messages. Meanwhile, Christopherâs condition worsened steadily, rising over a period of some twenty hours, to 107.6 degrees. Finally, the nurses, caught between a desperate fatherâs pleas and a doctorâs steadfast refusal to treat, put Campbell on the phone directly with the doctor.
Campbell demanded that his sonâs fever be treated immediately. The doctor refused. When Campbell grew more insistent, the doctor actually laughed. The boy was unconscious. His life was effectively over. What was the point?
âBy this time,â Campbell recalls with much emotion, âmy sonâs eyes were black, as if he had been in a fight. He was utterly still. He was burning up. The back of his neck was so hot you couldnât keep your hand on it. I said to the doctor, âThis is not a joke! This is my son. His life is at stake. His temperature is over 107 and you are going to do something about it.ââ The doctor, hearing the angry determination in Campbellâs voice and perhaps fearing legal consequences if Christopher died untreated, finally acquiesced.
Christopherâs temperature subsided. Soon thereafter he was moved to a rehabilitation center for therapy and began a slow recovery. Not long after, he moved home with his parents, where he spent his time relearning to walk with assistance and worked at a local youth center where he fed animals and counseled at-risk teenagers. Oh yes, Christopher felt very glad to be alive, as were his parents and the many troubled people he helped everyday.3
As I have spent more than twenty years traveling the country (and internationally) speaking about assisted suicide and other issues involving the ethics of modern medicine, as people react to my appearances on talk radio, television programs, and to my newspaper and magazine columns, with multiplying frequency I hear similar medical horror stories. People are afraid. They are deeply worried about what is happening to medicine: the potential impact of the Affordable Care Act (ACA, also known as Obamacare), doctors pressured by HMOs to reduce levels of care, hospital nursing staffs cut to the bone, the sickest and most disabled abandoned to inadequate care, elderly people dying in filthy nursing homes or in agony because their doctors fail to prescribe proper pain control.4 There have even been reported instances of desperate patients in hospitals calling 911 because they were unable to access needed medical attention.5
These anecdotes are symptoms of a disintegrating value system in health care that disdains the sickest and most disabled among us as having lives that are not worth living; that views expensive medical treatments for such people as a waste of valuable resources; indeed, that accepts their demiseâor increasingly, even their killingâas a legitimate answer to the difficulties caused by their serious illnesses and disabilities. In short, the ethics of health care are devolving into a stark utilitarianism that is quickly transforming the âdo no harmâ tradition of medicine that has for millennia been the cornerstoneâand hopeâof medicine.
At the same time, medical economics are exerting a gravitational pull into the moral abyss. For example, when Arizonaâs Medicaid programâthe state/federal health insurance for the poorâran into significant money problems, it canceled organ transplant surgeries for 98 percent of those eligible for the procedure.6 As this book will explainâsometimes in painful detailâwith medical technology growing ever more sophisticated and expensive, while the viability of the old sanctity/equality of life ethic comes under increased cultural pressure, these kinds of controversies are going to become increasingly common and the divisions they sow among us more deep and viscerally felt.
THE NEW HIGH PRIESTS
We have not entered this era of potential medical authoritarianism by chance. We were steered into it by an elite group of moral philosophers, academics, doctors, lawyers, and members of the medical intelligentsiaâknown generically as bioethicistsâwho have dedicated themselves over the last four decades to bending public and professional discourse about medical ethics and the broader issues of health care public policy to their desires. They are the cultural aggressors, as the mainstream view in the field is openly hostile to the traditional moral values and ethical traditions of our society.
Medical ethics focuses on the behavior of doctors in their professional lives vis-Ă -vis their patients. Bioethics focuses on the relationship between medicine, health, and society. This last element allows bioethics to pursue policies that go far beyond the well-being of the individual and to presume a moral expertise of breathtaking ambition and hubris. Many view themselves, quite literally, as the forgers of âthe framework for moral judgment and decision makingâ7 who will create âthe moral principlesâ that determine how âwe are to live and act,â a âwisdomâ they perceive as âspecially appropriate to the medical sciences and medical arts.â8 Indeed, some claim that âbioethics goes beyond the codes of ethics of the various professional practices concerned. It implies new thinking on changes in society, or even global equilibriaâ9 (my emphasis). Not bad for a school of thought that has only existed for about forty years.
Bioethicists typically see their work as integrating âmedical ethics and universal moralityâ beyond âa few general principlesâ toward the determination of âthe meaning of the good life.â10 It is âboth a discipline and a public discourse, about the uses of science and technologyâ and the âvalues about human life . . . with a view toward the formation of public policy and a teachable curriculum.â11 Put more simply, bioethics seeks to create the morality of medicine, define the meaning of health and wellness, and determine when life loses its value (or has less value than other lives) toward the end of forging the public policies and influencing the individual choices that will establish a new medical and moral order. More than a set of tenuous speculations, bioethics in recent years has ossified into an orthodoxy and perhaps even an ideology.
Many bioethicists rejected this claim after the publication of this bookâs first edition. They act in good faith, these objectors contended. The âquality of lifeâ ethic will create a better world. Besides, they argued, bioethics is not monolithic.12 After all, practitioners have widely divergent opinions about these issues and controversiesâranging from assisted suicide to cloning to the definition of âhealthââwith which bioethics discourse grapples. Moreover, many adherents claim, bioethics doesnât have an end goal. It is more akin to a conversation among professional colleagues, a process that merely seeks consensus about the most pressing moral and medical issues of our time.
If that were ever true, I contend that it is true no longer. Bioethics, at least of the kind without a modifier (conservative bioethics, Christian bioethics, etc.) may not be a monolithâa claim I never made. Disagreements certainly exist within the field. But they are more akinâwith some exceptionsâto the arguing of people who agree on fundamentals but disagree on detailsâsort of like Catholics bickering with Lutherans.
Most bioethicists recoil at their depiction as âtrue believersâ subject to orthodox precepts and the emotional zeal generated by intensely felt ideology. Their self-view is that of the ultimate rational analyzer of moral problems who, were pipe smoking still fashionable, would sit back, pipe firmly in mouth, acting as dispassionate âmediatorsâ between the extremes of medical technology and the perceived need for limits.13
But that is self-deception. Once bioethics moved away from ivory tower rumination to actively influence public policy and medical protocols, by definition the field became goal oriented. Indeed, University of Southern California professor of law and medicine Alexander M. Capron noted that from its inception, âbioethical analysis has been linked to action.â14 If dialogue is linked to action, at the very least that implies an intended direction, if not a desired destination. Even bioethics historian Albert R. Jonsen, a bioethicist himself, calls bioethics a âsocial movement.â15 Has there been any social movement that was not predicated, at least to some degree, in ideology? Moreover, bioethics pioneer Daniel Callahan, cofounder of the bioethics think tank the Hastings Center, has admitted that âthe final factor of great importanceâ in bioethics gaining societal respect was the âemergence ideologically of a form of bioethics that dovetailed nicely with the reigning political liberalism of the educated classes in America.â16 Thus, mainstream bioethics is explicitly ideological, reflecting the values and beliefs of the cultural elite.
I asked the venerable author, medical ethicist, and physician Leon R. Kass, MD, whether he shares my opinion. Kass told me, âWith due allowances for exceptions, I think there is a lot to be said for that view. There are disagreements about this policy or that, but as to how you do bioethics, what counts as a relevant piece of evidence, what kinds of arguments are appropriate to make, there is a fair amount of homogeneity. If you donât hone to that view, you are considered an outsider.â17
The noted sociologist RenĂ©e C. Fox, a close observer of bioethics from its inception, told me in a similar vein, âI would call it an inadvertent orthodoxy. You could even call it ideology, depending on how you define the term.â Fox added, âI do think bioethics has gotten institutionalized. It is being taught in every medical school in this country. The training people receive and the content of the curriculum of the short courses as well as the mastersâ and doctoral programs, can be quite formulaic. In that sense, I think you could talk properly about orthodoxy.â And while Fox told me that she does not believe (nor do I) that all bioethicists share the same âdoctrinaire values and beliefs,â she noted, âIf you are referencing that, again and again, bioethical reasoning, deliberation, and maybe even outcomes take certain forms, that may be correct.â18
British philosophy professor David S. Oderberg and Australian Supreme Court barrister Jacqueline A. Laing agree, writing, âIt is plain that bioethics has been dominated by a certain way of doing moral philosophy,â what they call an âestablishment view.â19 In this regard, Fox and her co-author, Judith P. Swazey, president of the College of the Atlantic in Bar Harbor, Maine, have written, âBioethics is prone to reify its own logic and to formulate absolutist, self-confirming principles and insights,â as bioethicists âhave established themselves, and their approach to matters of right and wrong, as the âdominant forceâ in the field.â20 Those are pretty good descriptions of the mind-set of ideologues.
Sociologist Howard L. Kaye, PhD, author of The Social Meaning of Modern Biology,21 believes that this bioethics establishment view conceives of itself âless as an attempt to arrive at an ethical regulation of biomedical developmentsâ and more as a system in which âbiology [is] transforming ethics.â Kaye observes that many bioethicists âbelieve fervently that there needs to be a radical transformation in how we live and how we think based on new biological knowledge because our values, our ethical principles, our self conception are based on outmoded religious ideas or philosophical ideas that they think have been discredited.â22 If Kaye is correctâand there is abundant evidence that he isâthe ultimate bioethics agenda is startlingly radical: dismantling the values and mores of our culture and forging a new ethical consensus in its own self-created image. Thereâs a word for such a breathtaking agenda: ideology.
Adding heft to my claim was the adverse reaction within the field generally to the appointment of...