Such issues are, of course, a proper part of medical decision making. For example, I once snapped a knee ligament while skiing. My orthopedist told me that I could have it repaired surgically, but it would be a delicate and painful process that would take more than a year to heal. My other option was to simply quit skiing and engaging in other sports requiring lateral movements. I decided to give up the slopes because I believed that choice best protected my life’s quality—although I might have made another decision if the injury had left me in constant pain. The same kind of cost/benefit analysis goes into more serious medical decisions, such as whether to accept a last-ditch round of chemotherapy or ask for medical technology to extend life.
The problem with the concept of quality of life arises when it ceases to be a factor in medical decision making and instead not only becomes the factor but is used as a measurement of moral worth. When applied in this manner, it is often called the “quality of life ethic,” which Peter Singer describes in his book, Rethinking Life and Death:
We should treat human beings in accordance with their ethically relevant characteristics. Some of these are inherent in the nature of being. They include consciousness, the capacity for physical, social, and mental interaction with other beings, having conscious preferences for continued life, and having enjoyable experiences. Other relevant aspects depend on the relationship of the being to others, having relatives for example who will grieve over your death, or being so situated in a group that if you are killed, others will fear for their own lives. All of these things make a difference to the regard and respect we should have for such a being.108
The danger of Singer’s approach should be obvious to every reader. The standards Singer uses to measure human worth are his standards based on what he considers important and “relevant.” And therein lies the heart of the problem. Subjective notions of human worth, in the end, are about raw power and who gets to do the judging. In our not-so-distant past, for example, decisions denigrating the moral worth of a subset of people (i.e., blacks) were made to justify their oppression and exploitation based on the allegedly relevant characteristics of skin color and cultural stereotypes. The quality of life ethic is no different—only the “relevant characteristics” have changed, not the wrongness of the approach. Quality of life, as a moral measure, strips worth and dignity from people based on health or disability, just as surely as racism does based on skin pigment, hair texture, or eye shape.
Not surprisingly, disabled people are especially worried about using quality of life as a yardstick of moral worth: they are the target. “Many in society consider disability as worse than death and a drain on our limited resources,” says attorney Diane Coleman, a disability rights activist and the founder of Not Dead Yet, a national organization that battles medical discrimination against disabled people and resists the legalization of assisted suicide. “There is a great revulsion against disabled people that is visceral. This disdain is masked as pity but many people believe that in an ideal world, disabled people wouldn’t be there.”109
That being true—and who can deny it—what would happen to the rights of disabled people if the equality of life ethic were supplanted in law and in medical ethics by a quality of life approach? Coleman worries, “Anti-disabled bias would become especially dangerous. If it becomes respectable to label us ‘inferior’ or even, ‘less human’ based on perceptions of the quality of our lives, it will become acceptable to oppress, exploit, and even kill disabled people. To some degree, this is already happening. People with disabilities are seriously discriminated against in health care as well as in other areas of life.”110
Coleman is no alarmist. Bioethicists widely embrace the “quality adjusted life year” (QALY) approach to health care rationing—one of the destinations to which the quality of life ethic would take us. Here’s a brief—and very simplified—overview of how the QALY system operates: Let’s say I have a serious heart ailment. Medicine A will give me two years of life at my current quality of life as an able-bodied man. That would be worth roughly 2 QALYs (fewer if I am elderly, but let’s not get too complicated here).
My friend Mark has MS and is a triplegic. Let’s say he contracts the same heart illness I have, and Medicine A would also give him two years of life at his current level as a man with a serious disability. Because he only has the use of one arm, his two years of actual life might only be deemed a .5 QALY.
The cost/benefit for providing the medicine is determined by a QALY formula to judge whether the cost of Medicine A is worth the number of QALYs it would provide. Let’s say that the total cost of the heart medicine for two years is $100,000 for 2 QALYs. The technocrats in charge of the rationing system might think this price is worth paying for my care.
But even though Mark would receive the same actual efficacy from the medicine, his supposed lower quality of life changes the equation dramatically. Mark might be denied coverage for the medicine because the $100,000 would only pay for .5 QALY: pure health care discrimination.
The United Kingdom already imposes the QALY system on the National Health Service. It isn’t yet used in the United States. Indeed, the Affordable Care Act prohibits using the QALY system in its eventual goal of establishing cost/benefit guidelines. But note: that prohibition might not stand. Powerful forces wish to repeal that protection in the law and import QALY rationing to America, including the New England Journal of Medicine.111
As this book will document, the growing acceptance of the quality of life ethic has already led to immoral and life-devaluing public policies and medical practices—with more threatened—undermining the virtue of our public policies and the ethics of health care.
The Georgetown Mantra: Having rejected the sanctity/equality of human life, the Hippocratic tradition, and concepts of objective right and wrong, bioethicists realized they needed to forge new analytical guidelines that would “be respected unless some strong countervailing reason exists to justify overruling them.”112 This need was filled in 1979 by the philosophy professors and bioethics pioneers Tom L. Beauchamp and James F. Childress in their book Principles of Biomedical Ethics.
Beauchamp and Childress posited four primary guidelines that have generally directed bioethics analysis ever since. The “four clusters of principles” are:
• Autonomy: “respecting the decision making capacities of autonomous persons”;
• Beneficence: “providing benefits and balancing benefits against risks and costs”;
• Nonmaleficence: “avoiding the causation of harm”; and
• Justice: “distributing benefits, risks, and costs fairly.”113
Since bioethics is generally a relativist pursuit, these four principles are not cast in stone but merely “general guides that leave considerable room for judgment in specific cases and that provide substantive guidance for the development of more detailed rules and policies.”114 Still, they are taught in medical schools, nursing schools, medical professional continuing education courses, short bioethics courses given to members of hospital ethics committees, community patient ombudsmen, hospital administrators, health insurance executives, and, indeed, to almost everyone who has taken a course in bioethics in the last twenty years. “The four-principle tradition is now so widely accepted,” Dr. Pellegrino wrote, “that some of its more whimsical critics have labeled it a mantra, implying that it is often supplied automatically and without sound moral grounding.”115 The influence of the Georgetown Mantra (so called because of the author’s affiliation with Georgetown University) in the application of bioethics in health policy and clinical decision making is hard to overstate.
There is of course nothing inherently wrong with any or all of the guidelines that make up the Georgetown Mantra and very much that is right with them. But in the relativist context in which they exist, unanchored in objective morality (such as equality/sanctity of life), these guidelines are entirely malleable and