“In this sense, we may indeed say that medicine has saved the life of ethics, in that it has given back to ethics a seriousness and relevance which it seemed to have lost for good.”
-Stephen Toulmin, 1982
“The emergence of medical ethics in the latter half of the 20th century helped revive medicine, saved it…from its narrow focus on science and technology to restore to it its former human dimensions of care, compassion and case focus.”
-Mark Siegler, 2010
Did medicine save the life of ethics? Toulmin , a professor in the University of Chicago Department of Philosophy and Divinity School until 1986, argued that it did in his 1982 essay. But at the 22nd Annual Dorothy J. MacLean Fellows Conference – dedicated to the memory of Toulmin – his former colleague Mark Siegler, the director of the MacLean Center for Clinical Medical Ethics, said the opposite might also be true. His argument found support in the sessions of the conference’s second day, which examined medicine’s present and future from the angle of ethics, and occasionally recommended applying the brake to the runaway train of science.
The first session of the day focused on the genetic testing of newborns, the kind of medical concept that sounds great on paper, but loses some of its luster with close, careful scrutiny. In theory, the ability to quickly screen a baby for disease immediately after birth should be a medical wonder, allowing physicians to quickly react and treat the child for medical conditions. But the history of such screening is far from ideal, as Norman Fost of the University of Wisconsin presented.
Consider the case of phenylketonuria (PKU), a nutritional deficiency that can cause mental retardation in around 1 of every 10,000 births. Spurred by John F. Kennedy’s call to action against the causes of mental retardation, scientists developed a cheap, simple test for PKU in newborns that was made mandatory. However, the test was “one of the worst tests ever devised,” Fost said, with a 95 percent false positive rate. To make matters worse, the special diet used to treat PKU turned out to be as harmful to children as the original disorder. As an isolated case, that story is frightening enough, but the pattern of unreliable tests and ill-considered treatments has repeated itself several times over, Fost said.
“Santayana said, ‘Those who do not study history are not doomed to repeat it,’” Fost said. “In newborn screening, it doesn’t really matter if you study history, it just keeps getting repeated anyway.”
Rather than slowing down to correct these flaws, the field of newborn screening is poised to expand using the latest genetic technology. Lainie Ross, professor of pediatrics at the University of Chicago Medical Center, talked about the near future where all 3 billion base pairs of a newborn baby can be sequenced from a single blood spot. That data can then be matched against the library of all known genetic disorders and markers of disease risk, giving parents an avalanche of information about their child’s current and future health.
But can anything be done with that information? Will an inability to treat genetic disorders produce unnecessary anxiety in parents? How do you determine who should have access to that child’s information? What if the child, when they reach adulthood, wants that information withdrawn? How should that information be used by insurers, employers, or law enforcement, if at all? In light of all these questions, genetic testing appears more and more inadvisable, even if the science to do so is nearly there.
“Clearly many issues need to be addressed before newborn genetic profiling should become routine,” Ross said.
The conference later jumped from ethical questions at the start of life to the ethics of the end. An afternoon session discussed the goals and limits of palliative care, including doctor’s ethical decision-making about easing suffering for patients in their final days. But don’t confuse the two terms, said Laurie Lyckholm of Virginia Commonwealth University.
“Palliative care isn’t just end of life any more,” she said. “It is for any time in a person’s life where they have a serious illness, when they have symptoms to alleviate, when they have to have difficult conversations and discussions.”
However, that new, expanded role for palliative care hasn’t decreased the controversy surrounding the field. Hospitals have expanded services in recent years, and a 2010 paper in the New England Journal of Medicine found that palliative care improved quality of life and even extended life by an average of 3 months in lung cancer patients. But the push to incorporate more support for palliative care into the recent health care reform bill was sabotaged by a Facebook post containing two inflammatory words: “death panels.”
Sarah Palin’s characterization of the end-of-life decision-making process as a cost-cutting measure for hospitals rather than a system designed to execute a patient’s wishes in their last days infuriated the field, and may have set it back years, various speakers in the panel said. The political conflation of palliative care’s primary mission – to comfort the very sick – with its ability to reduce costs associated with unnecessary or undesired care at the end of life means that the field must be more precise in communicating its goals, Lyckholm said.
“We have to be really careful to say that palliative care is right and correct and the right thing to do, not just to save money,” Lyckholm said. “But it really does save money as well.”
Beyond making the ethical case for palliative care, the panel also examined its internal ethical struggles. One example is the fuzzy line between sedating a dying patient for relief from their symptoms, a practice that may hasten death, and sedating a patient with the intent of bringing death more quickly. A survey of physicians conducted by Farr Curlin, associate professor of medicine at the University of Chicago, found that a doctor’s religious belief influences decisions about which of the two practices are appropriate.
Daniel Sulmasy, professor of medicine and in the Divinity School, discussed the decision as a matter of “The Rule of Double Effect,” an ethical principle that balances the desire to do good with the potential risk of causing harm. Sedation to relieve symptoms is acceptable under this rule even if it risks death, Sulmasy argued, while sedating a patient to unconsciousness for the purpose of hastening death (0r assisted suicide) violates it because the good is accomplished via harm, rather than in spite of it.
The Rule of Double Effect feels like elegant guidance for the questions posed by modern medicine, yet its history goes a little farther back – all the way to 13th century philosopher Saint Thomas Aquinas. But as the conference showed again and again, new opportunities for applying such ancient principles keep arising as science opens up new frontiers for detecting, treating, and curing human disease. Whether medicine saved ethics, or vice versa, the fusion of the two fields is more necessary than ever.