As head of the Department of Bioethics at The Clinical Center of the National Institutes of Health, and someone who has devoted his life to bioethics issues, Ezekiel J. Emanuel has spent much of his career discussing and writing about some of the most ethically complicated issues about health care reform.
In 1996, for example, Emanuel contributed an article to the Hastings Center Report, in which he discussed “the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed.”
Emanuel said that under the “civic republican or deliberative democratic” construct, “services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia. A less obvious example is guaranteeing neuropsychological services to ensure children with learning disabilities can read and learn to reason."
In the hands of academics and those with the time and inclination to see such writings as exercises in philosophy, Emanuel’s writings might be par for the course.
But Emanuel is the older brother of White House chief of staff Rahm Emanuel, and he now serves as health-policy adviser at the White House’s Office of Management and Budget and as a member of Federal Council on Comparative Effectiveness Research.
As such, opponents of President Obama’s health care reform efforts have seized upon the remarks. The passage above, for instance, in an op-ed in the New York Post titled “Deadly Doctors” by the former Lt. Gov. of New York, Betsy McCaughey, becomes translated as: “Don't give much care to a grandmother with Parkinson's or a child with cerebral palsy.”
Emanuel, McCaughey writes, should never be entrusted with the power to decided “what plans cover, how much leeway your doctor will have and what seniors get under Medicare.”
“As a world renowned bioethicist,” says a White House official, “Zeke Emanuel has written scores of articles about many different issues many of which are some of the toughest issues that our society faces.” The official says Emanuel’s words from academic discussions of theoretical constructs are now being unfairly taken as his beliefs and applied to the current health care debate.
The official says that Emanuel in that article was clearly advocating against what McCaughey says he’s supporting.
“After a long review of the pluses and minuses of using various schools of philosophical thought to being able to lead a theory of how to allocate health care, he describes the pluses and minuses of the civic republican/deliberative democracy school of thought,” says the official.
The sentence that follows in Emanuel’s article, the official notes, is: “Clearly, more needs to be done to elucidate what specific services are basic; however, the overlap between liberalism and communitarianism points to a way of introducing the good back into medical ethics and devising a principled way of distinguishing basic from discretionary health care services.”
“By the sentence that follows the one McCaughey quoted,” the official says, “it’s obvious that Zeke sees this as a fault in this approach that needs to be addressed in further discussion.”
Those to whom this happens often find themselves arguing that their quotes are not only being twisted and taken out of context, but they are being portrayed as believing the very opposite of what they were stating. Anyone who enters public life is subject to sentences being taken out of context. But for academics it may be an even more dangerous situation.
And of course it is not new: the most notable example may be Lani Guinier, President Clinton’s nominee to be Assistant Attorney General for Civil Rights, faced tough questions from Senate Republicans in 1993 about her academic views on proportional representation. Guinier maintains that the media portrayal of her writings were blatantly inaccurate and caricatures; she opposes electoral quotas and yet was portrayed as their most ardent “madwoman” supporter, in the word of the Philadelphia Inquirer’s editorial page editor. As the Washington Post wrote at the time, her time in “the ivory tower” of academia where “your job is simply to think…to think and write challenging things that press, probe, provoke, at the edge of understanding” clearly hurt her.
For the prolific Emanuel — the author of nine books, 11 book chapters, and more than 200 magazine articles – the process is frustrating. He wrote a chapter in Harrison’s Textbook—the main medical textbook—on improving end of life care; edited the of end of life care section of UpToDate the main electronic medical textbook; and posited in “The Promise of a Good Death” in Lancet Oncology how doctors need to treat the whole patient and not just symptoms. Medical experts say he’s not known for being cold towards the needs of the dying; quite the opposite.
And yet, McCaughey writes that Emanuel “explicitly defends discrimination against older patients,” and cites as evidence a quote from a January 2009 Lancet article Emanuel co-authored with two others that states that “Unlike allocation by sex or race allocation by age is not invidious discrimination; every person lives through different life stages rather than being a single age. Even if 25-year-olds receive priority over 65-year-olds, everyone who is 65 years now was previously 25 years.”
The White House says McCaughey is again twisting Emanuel’s words.
“The article is not about medical policy but about what constitutes discrimination,” a White House official says. “It’s a highly theoretical piece.”
That’s true. Emanuel and his co-author state that: “Treating 65-year-olds differently because of stereotypes or falsehoods would be ageist; treating them differently because they have already had more life-years is not.” They are debating whether such different treatment is inherently prejudicial.
But the truth of the matter is that Emanuel, as a bioethicist, has taken positions with which some would disagree. In that Lancet article, addressing the issue of medical interventions where there is a limited supply of treatment compared to the population – organs and vaccines, for example – the authors evaluated eight specific allocation principles they classify into four categories, and three existing systems including, for example, the United Network for Organ Sharing points systems.
And they do in turn “recommend an alternative system—the complete lives system—which prioritises younger people who have not yet lived a complete life, and also incorporates prognosis, save the most lives, lottery, and instrumental value principles.”
But Emanuel also wrote he believes in “modifying the youngest-first principle by prioritising adolescents and young adults over infants. Adolescents have received substantial education and parental care, investments that will be wasted without a complete life. Infants, by contrast, have not yet received these investments. Similarly, adolescence brings with it a developed personality capable of forming and valuing long-term plans whose fulfillment requires a complete life. As the legal philosopher Ronald Working argues, ‘It is terrible when an infant dies, but worse, most people think, when a three-year-old child dies and worse still when an adolescent does’; this argument is supported by empirical surveys. Importantly, the prioritisation of adolescents and young adults considers the social and personal investment that people are morally entitled to have received at a particular age, rather than accepting the results of an unjust status quo. Consequently, poor adolescents should be treated the same as wealthy ones, even though they may have received less investment owing to social injustice.”
Emanuel is not in charge of making decisions for the nation’s health care providers. His theoretical argument that a 13-year-old should receive a heart transplant before a three-month old will not become law. But it also may be uncomfortable to read such words.
A problem in translating some of these discourses into the realm of the political is they are often written in the cold, sterile language of the Ivory Tower.
Such a situation played out earlier this year, when John Holdren, director of the White House's Office of Science and Technology Policy, faced questions from conservatives about some of his earlier writings, mostly about ECOSCIENCE, a 1977 college textbook Holdren co-authored with Paul and Anne Ehrlich.
“The trio prescribed a rigidly enforced, government-imposed limit of two children per family,” wrote the conservative FrontPageMag. “Holdren and the Ehrlichs maintained ‘there exists ample authority under which population growth could be regulated.’”
“Obama's Science Czar Considered Forced Abortions, Sterilization as Population Growth Solutions,” headlined a story on FoxNews.com.
Says a White House official: “The quotations used to suggest that Dr. Holdren supports coercive approaches to limiting population growth were taken from a 1977 college textbook on environmental science and policy, of which he was the third author. The quoted material was from a section of the book that described different possible approaches to limiting population growth and then concluded that the authors’ own preference was to employ the noncoercive approaches before the environmental and social impacts of overpopulation led desperate societies to employ coercive ones. Dr. Holdren has never been an advocate of compulsory abortions or other repressive means of population limitation.”
The White House official goes on to say that “Dr. Holdren and his co-authors make clear in the book that the section dealing with overpopulation is a compendium of others’ views, which are meticulously footnoted. Indeed, Dr. Holdren makes clear in the book that he personally rejects coercive approaches to population control.”
Unquestionably, ECOSCIENCE included academic analysis of various methods of population control. And certainly the clinical, dispassionate way subjects such as forced sterilizations are addressed is written more as an academic discourse than as a politician’s or policymaker’s proposal. As when the authors wrote: “Adding a sterilant to drinking water or staple foods is a suggestion that seems to horrify people more than most proposals for involuntary fertility control. Indeed, this would post some very difficult political, legal, and social questions, to say nothing of the technical problems.”
Holdren’s opponents seized upon the following paragraph from the book: “To date, there has been no serious attempt in Western countries to use laws to control excessive population growth, although there exists ample authority under which population growth could be regulated. For example, under the United States Constitution, effective population-control programs could be enacted under the clauses that empower Congress to appropriate funds to provide for the general welfare and to regulate commerce, or under the equal-protection clause of the Fourteenth Amendment. Such laws constitutionally could be very broad. Indeed, it has been concluded that compulsory population-control laws, even including laws requiring compulsory abortion, could be sustained under the existing Constitution if the population crisis became sufficiently severe to endanger the society. Few today consider the situation in the United States serious enough to justify compulsion, however.”
However chilly such passages might seem to most of us, the authors do note that their personal recommendation “is to expand the use of milder methods of influencing family size preferences, while redoubling efforts to ensure that the means of birth control” are available.
Regarding forced sterilizations, the authors note that “(n)o such sterilant exists today, nor does one appear to be under development…And the risk of serious, unforeseen side effects would, in our opinion, mitigate against the use of any such agent…” In a different passage, the authors referenced “the obvious moral objections” to the government requiring women to implant contraceptive capsules.
During his Senate Commerce Committee confirmation hearings, Holdren was asked by Sen. David Vitter, R-Louisiana, if he thinks “determining optimal population is a proper role of government.”
“No, Senator, I do not,” Holdren said. “I think the proper role of government is to develop and deploy the policies with respect to economy, environment, security, that will ensure the well being of the citizens we have.”
Asked Vitter, “in 1973, you encouraged ‘a decline in fertility to well below replacement’ in the United States because ‘280 million in 2040 is likely to be too many.’ What would your number for the right population in the US be today?"
Holdren said, “I no longer think it's productive, Senator, to focus on the optimum population for the United States. I don't think any of us know what the right answer is. When I wrote those lines in 1973, I was preoccupied with the fact that many problems the United States faced appeared to be being made more difficult by the rate of population growth that then prevailed. I think everyone who studies these matters understands that population growth brings some benefits and some liabilities. It's a tough question to determine which will prevail in a given time period. But I think the key thing today is that we need to work to improve the conditions all of our citizens face economically, environmentally, and in other respects.”
Vitter voted to confirm Holdren, as did every member of the Commerce Committee.