Posted: Aug 31, 2009
J. Hughes
Bioethicists might prefer to be seen as wise non-partisan sages, dispensing timeless wisdom. But now, albeit with great reluctance, they are forced to take an active role in the increasingly divided biopolitical landscape.
The Bush administration’s appointment of Leon Kass’s President’s Council on Bioethics shattered American bioethicists’ belief that they were above politics. The polarization of liberal and conservative bioethicists in the wake of Kass’s ascendancy revealed bioethics to be proto-biopolitics, a temporary academic sherry hour where colleagues could chat about cloning and the definition of death until they were drowned out by the clash of biopolitical partisans in the streets.
With the election of President Obama, championed as a return of Enlightenment values, I’m sure some bioethicists believed the partisan polarization could be set aside, forgotten as an aberration of the Bush years. Now the hard Right’s disinformation campaigns about “death panels” and attacks on bioethicists in the health reform debate have made clear that the majority of progressive bioethicists have to take a political stand for our Enlightenment values of freedom, equality and solidarity against the forces of reaction and unreason.
First we saw the demagoguing of the provision in the House reform bill that would have allowed doctors to be reimbursed for one conversation every five years with their patients about end of life planning and advance directives. The conversations would be, of course, voluntary, and the patients could choose an advance directive that insisted on a full court press till the bitter end. But the Fox News heads made this out to be a policy requiring all patients to sign up for an early death. Then they added the charge that the Veteran Affair’s booklet on end-of-life planning document, “Your Life, Your Choices” pushed veterans to end their lives, when in fact, like all advance directives materials, it simply asked whether the person would want to forgo life-sustaining treatment in a series of scenarios.
Next we saw the conspiracy theories about the bioethicist Ezekiel Emanuel being part of a grand plot to promote euthanasia and draconian rationing as part of the alleged socialized medical system the Democrats were creating. The Democrats aren’t, sadly, proposing a socialized medical system, or any draconian rationing, and Ezekiel Emanuel is not a proponent of draconian rationing schemes, simply common-sense utilitarian priority-setting. But a paragraph or two out of thirty years of voluminous writings on bioethics, taken out of context by the Republican noise machine and then placed in juxtaposition with disinformation about the Soylent Green suicide factories supposedly being run by the Brits and Canadians, and there was at least one frothing tea-bagger at every healthcare meeting quoting from the new Protocols of the Elders of Zeke.
Then, there was the charge that the Democrat’s health reforms would create “death panels,” a lie fabricated by the Republican propagandist Betsy McCaughey. One would think that Democrats would have been able to immediately turn this attack around, since it is in fact private managed care that runs death panels, by denying coverage to the sick, then denying services for the people they cover, and then dropping people from coverage when they get sick. But since half of the Democrats have been hopelessly compromised by cozy relationships with the health insurance industry and medical industrial complex these arguments rarely occur to them.
Fortunately, as is often (too often) the case, it took Jon Stewart’s brilliant cross-examination of McCaughey on The Daily Show to deflate the balloon of “death panel” hot air. Unfortunately, polls show the damage had already been done to a credulous public’s growing unease with the health care reform process, especially among seniors.
With the mounting campaign of hate being directed at bioethicists, and core concepts of bioethical practice that have been established for decades, the liberal bioethicists were finally stirred to response.
First came the statement from the Association of Bioethics Program Directors:
Three Myths About the Ethics of Health Care Reform
The American Bioethics Program Directors represents the leadership of 60 academic bioethics programs across North America. At this critical juncture in the national debate about health care reform in the United States, our membership wishes to send a clear message about some myths that challenge the ethics of reform proposals.
Myth #1: Health care reform will mean giving up control of my own health care decisions.
Fact: The field of bioethics has long championed the rights of individual patients to make their own health care decisions in consultation with their physicians. If we thought the major proposals being considered posed a serious threat to these rights, we would be the first to speak out. But that is NOT the case. The right of individuals to make decisions about their health care is engrained in the ethics of American medical practice and that won’t change under any of the approaches to health care reform currently under discussion.
Myth #2: Health care reform will control health care costs by depriving patients of important, but costly, medical treatments.
Fact: This is also untrue. If anything, the provisions in current health care proposals will increase the likelihood that patients will get quality medical care and decrease the likelihood of medical errors that kill thousands of patients every year. There are unethical ways to control costs, including refusing to treat the uninsured or those who have insurance but cannot afford the exorbitant out of pocket costs of expensive treatments-that is the status quo. Health care reform offers a more coherent approach to delivery of health care that aims to control costs while maintaining the quality Americans have come to expect and deserve.
Myth #3: Health care reform will deny older Americans medical treatments at the end of life.
Fact: This may be the most pernicious myth of all. In proposed approaches to reform, there is a provision that supports the rights of individuals and their families to make decisions at the end of life by institutionalizing a process for patients and families to express their desires to their physicians and other health care professionals. This right is part of the culture of American medicine, defended since the beginnings of the field of bioethics, and supported by case law going back over 50 years.
Some opponents of health care reform have twisted both the intent and effect of this provision, making unsupported claims about how it will push older Americans into hospice against their will, and even euthanasia. Nothing could be further from the truth. Straightforward conversations about end of life are critical to quality health care, with decisions continuing to be made by individuals and their families in ways that are consistent with their values and in consultation with their physicians.
Here is the real bottom line: The current state of health care is unethical. It is neither just nor fair. There is no morally defensible reason why some Americans get excellent medical care at costs they can afford and other Americans lose their homes or go into bankruptcy attempting to secure treatment for a seriously ill loved one. The current proposals being debated in Congress all go a long way towards making health care in America more just. At the same time, there is nothing in the current proposals that threatens a patient’s right to choose, a critical feature of an ethically acceptable health care system.
We commend efforts to reform the health care delivery system with commitments to cover all Americans while protecting choice and maintaining the high quality care that our fellow citizens deserve. We stand ready to aid however we can in this vital effort.
This statement put pressure on the American Society for Bioethics and Humanities, which is the largest association of bioethicists in the world. They have long had bitter internal divisions between “progressives” and “professionals” over the ASBH should take stands on ethical and political issues of the day.
With the careers and lives of bioethicists being threatened, the balance tipped and they finally issued a statement on August 25th:
Response to the Recent Attacks on Bioethicists
In recent days we have witnessed unfair attacks in print and on the Internet on prominent bioethicists such as Ezekiel Emanuel and Robert Pearlman. (cf. B. McCaughey, “Deadly Doctors” New York Post, August 17, 2009; J. Towey, “The Death Book for Veterans,” Wall Street Journal, August 18, 2009). In each case, these ethicists have been incorrectly portrayed as seeking to disenfranchise patients from the decision making process and thereby hasten their deaths.
Mischaracterizing the work of any of the thoughtful people who have tried to contribute to this debate, attributing to them nightmarish views for purely political purposes, not only perpetrates a heinous form of intellectual violence against those individuals, it denigrates bioethics as a profession, and more importantly, it does a profound disservice to the society that we seek to serve.
In our complex health-care system, there has proven to be no single method to guarantee that the wishes of the patient and his or her family will be respected when they choose to focus on the comfort of the patient rather than pursue other avenues of treatment.
As a result, bioethicists have often participated in the development of legislation, regulatory and accreditation standards, institutional policies, living wills, values histories, and a variety of other means to record the wishes of patients and to provide impetus to respect those wishes. Similarly, many bioethicists endorse proposed reimbursement mechanisms that compensate physicians and other professionals for asking the patient about his or her wishes and having a detailed discussion of these sensitive manners.
The Board of Directors of the American Society for Bioethics and Humanities deplore the attempts by opponents of health care reform to scare the public by parodying bioethicists’ efforts to promote respect for patients’ wishes concerning compassionate care at the end of life. Ripping language from its context in a living will or policy proposal can easily make any document or mechanism sound inhumane and cruel, but it is a form of dishonesty that merits only contempt.
The ASBH’s statement isn’t as good as the ABPD’s, focusing only on defending the honor of the profession, but it’s a start. Perhaps the ASBH will eventually be able to acknowledge that 99% of their members consider America’s 50 million uninsured to be a violation of all conceivable interpretations of ethics and human rights.
President Obama will shortly be appointing his own bioethics advisory body, and the signals are that it will not only be again reflective of the liberal mainstream of bioethics, like the Clinton National Bioethics Advisory Commission, but also be specifically tasked to focus on the questions of health care access and priority-setting. Let us urge the Obama administration and its bioethics advisors to have the courage to appoint proud and determined progressives to the body, and give up vain efforts at “balance.”
Bioethicists can no longer pretend to be wise non-partisan sages, dispensing timeless wisdom. With great reluctance they have been forced to become part of the increasingly divided biopolitical landscape.
--------------------------------------------------------------------------------
James Hughes Ph.D., the IEET Executive Director, is a bioethicist and sociologist at Trinity College in Hartford Connecticut USA. He is author of Citizen Cyborg and is working on a second book tentatively titled Cyborg Buddha. He produces a syndicated weekly radio program, Changesurfer Radio.
http://ieet.org/index.php/IEET/more/hughes20090831/
