An Open Letter to Future Bioethicists

I couldn't attend the ASBH meeting in DC this year, but apparently, Ezekiel "Zeke" Emanuel gave quite a controversial speech. While I don't have the text of the original speech, my guess is that it will be posted on the ASBH website at some point. But what I do have is Art Caplan's response, from which you can glean certain aspects of Zeke's speech -- I'll be interested to see/hear what kind of reaction this gets:

Facts alone won’t suffice for the field of bioethics

When you get old enough as a practitioner in any field young people seek your advice about what they should do if they want to do what you do. Given that my age seems to be increasing exponentially this has been happening to me with increasing frequency. Undergraduates, high school students, medical students, those pursuing degrees in law and nursing and even those interested in a mid-career change have been asking me what they need to do if they want to pursue a career in bioethics.

I have thought about their question quite a bit. I have come to realize that the answer is not the same for everyone who presents the questions. But, the core of the answer is pretty much the same; pursue masters level training in bioethics, acquire familiarity with key social science methods and tools, learn something about a particular sub-area of the health sciences or life sciences and, seek out every opportunity to fine tune your analytical and rhetorical skills by working with others on projects, research, consulting, or teaching activities. At its heart bioethics is an interdisciplinary activity and knowing how to work with others who do empirical, historical, legal and normative work is a must.

I had thought that advice to be sound until I heard Zeke Emanuel’s plenary address to open the most recent annual meeting of the American Society of Bioethics and the Humanities. Zeke espoused a vision for future bioethicists that I think is narrow, misguided and wrong. Now I say that in the spirit that Zeke himself enjoys—vigorous debate about a matter that both of us consider of the gravest importance.

Zeke Emanuel, a physician with a degree in political science as well, is one of the best and brightest scholars in the field of bioethics. His writings are solid and exemplify how best to integrate empirical inquiry with normative analysis. And the ‘shop’ he has run at the NIH Clinical Center for many years prior to moving into the Office of Budget and Management to work on health reform has done an outstanding job training younger scholars in the ins and outs of bioethical inquiry. These facts are precisely why Zeke’s recent plenary address to the American Society of Bioethics and the Humanities was so disappointing.

Zeke began his speech by joking that he knew much of what he had to say would annoy his audience. He then proceeded to argue that the future of bioethics and of bioethicists depended upon the field moving away from its high public profile in political, media and policy debate. What bioethics needs, he argued, is a beefing up of the shabby empirical foundation it now relies upon for its normative and policy claims.

The only way for bioethics to flourish, to paraphrase Zeke’s key contention, is if bioethicists spend less time in public places, more time mastering quantitative methods and publishing empirically grounded research on topics such as informed consent and surrogate decision-making at the end-of-life in peer-reviewed journals. He also went on to add that he did not find any merit in masters programs or PhDs in bioethics since without a more robust empirical foundation there could be little value in such training.

A young, wanna-be bioethicist, Zeke contended, would be best served seeking training in behavioral economics, psychology, decision theory or perhaps, he grudgingly conceded, sociology. Those armed with these tools could be expected to create the rigorous empirical foundation that bioethics now sorely lacks. Moreover, Zeke predicted, those willing to enter bioethics by heading down his prescribed path can expect generous financial support in the form of a pot of gold provided by a National Institutes of Health poised and eager to provide funding for rigorous research.

Before any prospective bioethicists answer Zeke’s clarion call for rigor by dusting off their applications to departments of economics and the behavioral sciences let me try to point out why Zeke’s vision about what bioethics should be is severely myopic as well as inadequate.

Zeke’s call for bioethics to take a sharp empirical turn has power because it is embedded in his talk of the importance of data and rigor. Both are indeed important for bioethics for a variety of reasons. But, neither will get bioethics where it needs to be if it is to serve health care providers, patients, policy makers or the public.

Bioethics, in my view, has a duty to engage the public with bioethical questions. The topics that bioethics grapples with—how to manage dying, the use of reproductive technologies, what to do to maximize the supply of transplantable organs and tissues, how best to promote clinical and animal research, what information you should expect to receive as a patient about your diagnosis and treatment—are of keen importance and legitimate interest to everyone, rich and poor; young and old around the globe. Part, albeit part, but nonetheless a crucial part of the bioethicists role is to alert, engage and help to illuminate ethical problems and challenges both old and new in the health and life sciences. Note I do not say to solve them nor to be seen as an authoritative source to whom bioethical issues ought be assigned. Rather bioethics’ role is both Socratic and prophetic—challenge, probe, question, warn, chastise, alert, and, as Zeke appreciates, irritate the powers that be when necessary.

In this role of moral diagnostician bioethicists must be responsible and strive for clarity in provoking public attention and debate. However, in this role data is often absent, in dispute or woefully poor. In addition questions loom large and pressing, passions run deep and fear and ignorance are omnipresent companions to doing bioethics with an eye toward helping the public understand issues and options. To engage in the public role that bioethics has and should enthusiastically continue to play in the media, policy, education, legislation and the law more tools are needed then empirical data no matter how rigorous or precise that data and the means used to generate it may be.

One must be able to present a cogent argument, know the areas of consensus that have been established about ethical issues over the history of medical ethics and bioethics, have a familiarity with health law, the infrastructure of policy and a grasp of political, cultural, literary, historical and social dimensions of what makes morality tick in various cultures. In the absence of these skills and knowledge data is completely and utterly blind, even useless. That is why it is precisely this skill set that the aspiring bioethicist should expect a masters program or a PhD program in bioethics to provide in order to gain the analytical and argumentative skills to competently and responsibly carry out the crucial public role bioethics has.

At the end of the day bioethics is a public activity which uses empirical inquiry and information as a tool. Admittedly empirical data are the most important of the tools in the bioethicists toolbox but still they are only one of the types of tools that are used.

Zeke’s vision of bioethics completely confuses the instrument—compiling reliable empirical information relating to normative issues—with the job—informing the public about problems, options and suggesting possible avenues for their resolution.

Zeke’s vision makes a bit more sense if one focuses on the role that bioethics plays within health care for professionals and institutions. There bioethicists often act as consultants or help formulate policy in ethically contentious areas working with providers and administrators and sometimes even payers. But even in this setting, while data is often essential it is never sufficient. Much of what occurs in doing an ethics consultation, for example, has as much to do with knowing how to mediate a dispute as it does a recitation of the facts of a case or having at hand well-supported information about the consequences of various courses of action. In many other situations the ‘facts’ are not known and won’t be known—ever because the human interactions are too complex. Bioethics at the bedside is very much an ethical, social and personal activity and while data has a part to play it has about as much a part to play as it does in our everyday lives and decisions which is to say—sometimes it matters, often it does not.

Before the young bioethicist is told to follow Zeke’s path of empirical positivism consider one other fact. We will not in our lifetime or that of our children ever achieve the kind of empirical certitude about much of anything of the sort that Zeke suggests will help future generations of bioethicists do their work. For every ethical problem for which sufficient data exists to point toward an answer a hundred blossom for which the data don’t. For every ethical problem for which sufficient data have been assembled to make an answer rational, sensible, or even self-evident there are many where behavior, policy and practice do not and cannot be made to conform to that data. Sometimes data alone can point toward an answer. Almost always, however, it is a prior moral argument that points toward the use to which data will, could and ought be put whether that be in medical practice or in medical ethics. And more often then not moral and value arguments simply moot data and that situation cannot be rectified by appeals to more data.

Zeke ended his remarks that day by acknowledging he was not really trying to end the public role or policy dimension of bioethics. Rather he was just trying to reorient the field’s priorities. I would suggest Zeke be heeded but only half-heartedly.

More data is needed in bioethics. More scholars with empirical quantitative skills are needed. That said, if the goal of bioethics is not simply to produce every-increasing amounts of NIH funded empirical data but rather to make a difference for the better in the lives of patients, their health care providers, scientists, and the general public then what we need and will continue to need are bioethicists who know their history, understand the power of cases, stories and analogical reasoning, can mount cogent, coherent arguments based on the best information at hand, who are comfortable talking with a state legislator, an NIH institute director, a TV talking-head, an athletic coach, a small town family doctor and a minister. Aspiring bioethicists would be well served to develop that full skill set and to seek out bioethics programs that can teach them to meet all of those needs.

Arthur Caplan, PhD
Sidney D. Caplan Professor of Bioethics
and
Emanuel & Robert Hart Director
Center for Bioethics
University of Pennsylvania

Panayiotis Zavos: I've Cloned a Human!

Whether the news stories on Panayiotis Zavos’ latest efforts to clone a human embryo are a hoax or not, there is no doubt that a tremendous amount of scientific progress has been made since the 1997 announcement that a sheep had been successfully cloned; cloned primates and pets and the creation of induced pluripotent stem cells and human-nonhuman chimeras are just a few of the scientific discoveries that get us closer everyday to the prospect of a cloned human being. The ability to radically alter human reproduction raises fundamental questions regarding the nature of our humanity and the character of our society.

Thousands of scientists, scholars, journalists, religious leaders, and policy makers have debated and discussed the ethical implications of a wide range of reproductive technologies, citing ethical concerns from safety, kinship disruption, and the commoditization of reproduction to concern for genetic diversity and the threat of eugenic application. While the benefits of many reproductive technologies – genetic testing, therapeutic cloning, genetic germline modification, and chimeric modeling, to name a few – are still being debated, reproductive cloning is nearly universally opposed. Most believe it currently poses unacceptable safety risks.

The opposition to reproductive cloning has led to a growing effort to ban the practice at a state, national, and international level. All this activity led us to consider the question: Is there a consistent theme in the ethical language used to justify banning reproductive cloning? Does the language reflect the moral values and common goals of the world community or does it unwittingly set the stage to undermine procreative liberty and scientific progress by appealing to vague ethical principles that serve a broader political agenda?

Before we support a worldwide ban on cloning, we need to carefully examine the ethical language used and be sure it reflects the common good. We must watch carefully as human dignity is employed to ban human reproductive cloning, for it can set the stage for banning other reproductive technologies such as IVF, genetic testing and genetic modification as well as therapeutic cloning.

You can read our full analysis here.

Moral Distress

When Doctors and Nurses Can’t Do the Right Thing

The writer, a physician, Pauline W. Chen, M.D, describes her experiences of witnessing what an ethics consultant she knew called “moral distress.” The ethics consultant, also a medical doctor, stated that this was a growing concern at her hospital. Moral distress is the feeling of being trapped by competing demands from bureaucracy, family, and professional peers that forces doctors and nurses to compromise their commitment to what is best for patients.

Dr. Chen described a scenario that involved a very talented nurse who possessed tremendous perspicacity regarding clinical situations. She noticed over the years, however, that this nurse’s communication style devolved from sharp insight to vague non-commitment when communicating with doctors and supervisors. One situation in particular provoked the writer of the article to question the nurse about her change in attitude.

An intensive care unit (ICU) patient who appeared beyond help was taken into the operating room repeatedly over a period of a month. The patient’s abdomen was riddled with an unrelenting bacterial infection that was refractory to treatment. The nurse’s concern for the welfare of her patient as well as her questions regarding the futility of the surgeries were repeatedly ignored by the surgical team. She began to resort to sarcasm and, ultimately, resigned herself to silence whenever she was asked to take the patient in for yet another unsuccessful surgery.

The nurse shared her frustration over not being able to advocate for her patients. She was faced with the moral dilemma of choosing to do what was right for the patient or protecting herself from being criticized by doctors or warned by her superiors. This frustration is shared by many nurses. A recent study found that 15 percent of nurses leave their jobs because of moral distress. Doctors grapple with their own version of moral distress but not to the same extent as nurses.

According to Ann B. Hamric PhD, RN, the lead author of a University of Virginia study of ICU nurses and physicians, moral distress may stem from a variety of situations, but it is, in large part, a product of the work environment. Doctors and nurses both suffer from feelings of a lack of autonomy and threatened integrity, fearfulness, and lack of respect. Doctors feel that lawyers and risk managers are dictating patient care over and above the physicians’ professional judgement. The United States has had a nursing shortage for years and a primary care shortage is pending. Dr. Hamric believes that the first step to dealing with moral distress is to recognize it as an issue and then to make a point of discussing it in the health care setting. If health care providers are unable to maintain their professional integrity and do what is right for their patients, the shortage will inevitably become a crisis.

I feel that respect, fairness, and autonomy are at the core of this issue. At the heart of nursing is the imperative to advocate for the patient. The nurse is the liaison between the physician, the social worker, the family, and the patient. No one is more intimately involved in the patient’s care than the nurse. This caregiving role distinguishes nursing from medicine and gives nurses a unique and valuable perspective. Patient hospital ratings are often directly proportional to the quality of nursing care received. Yet nursing professionals continue to feel undervalued and disrespected.

When healthcare providers work as a team of dedicated professionals rather than in the constraints of an outmoded hierarchy, everyone benefits. I was lucky enough to work with an amazing group of doctors and nurses (there were some bad apples, of course). I felt respected by the doctors, my colleagues supported me, my insights and recommendations were valued, and many of my patients appreciated the care I provided them. However, the manpower shortage confronted us on a daily basis. Mandated overtime was the norm. Burnout was common, resentment over not being able to give patients the full attention they deserved was an underlying theme, and safety was an overriding concern. Turnover was high as, week after week, my supervisor tried to balance the schedule, deal with upper management who had no clue about the realities of working on a hospital floor, and, somehow, appease the increasingly disgruntled troops. She too eventually left.

We were paid well and raises came often. But there was no life outside of work. We were required to work every other weekend. That meant working for two weeks at a time before getting two days off in a row. That, in addition to overtime. Days off had to be requested at least a month in advance and weren’t always granted. Sick days were offered but nurses who called out more than two days in a year were denied a raise. Some nurses did feel disrespected. On-call doctors were rude and imperious. The buck always stopped with the RN: Whatever the nurses aides didn’t get to or didn't feel like doing was dumped on the nurse; if social work wasn’t able to do something the nurse picked up the slack; doctors talked down to the nurses and some had the frightening reflex of blaming the nurse for their own mistakes. There were more patients than nurses to care for them.

Numerous studies, analyses, task forces and questionnaires later, nothing much has changed to improve the nursing shortage. The answers seem obvious to nurses but there seems to be a conspiracy of ignorance among the powers that be. The problem is systemic and one that is confronting professionals everywhere. Money is more important than people, timelines are more important than quality, the status quo is more important than teamwork, and upper management everywhere have their own agenda. There is no single solution to this problem but it doesn’t appear that any real efforts have been made to resolve it. If we were living in a different time, place, and culture, there would have been a revolution by now. But there seem to be too many competing interests for anyone to unify for a common goal and purpose. I don’t know the answer. I left nursing too for another job that has its own challenges with moral distress. That’s life in America I guess.

A Refreshing Change: A Code of Ethics in a Presidential transition...

[Hat tip to Dr. Matt Wynia, director of the American Medical Association Institute for Ethics for bringing our attention to this one]

Any who has attended an ASBH meeting knows that one of the issues that has been hotly debated among members in the last few years is whether or not bioethicists should have a code of ethics to which they agree to adhere to retain membership -- it is just one step towards setting standards, obtaining public trust, and promoting transparency. Well, it looks like the Obama transition team beat us to punch:

"At an afternoon press briefing in the Transition Team offices for President-elect Barack Obama, transition team co-chairman John Podesta said this would be “the most open and transparent transition in history” and released a set of rules that lobbyists working on the team will be required to abide by.

The list of rules include the following: Lobbyists working with the team -- a list of whom will be released -- are prohibited from doing any lobbying during the transition; someone who becomes a lobbyist after working on the transition is prohibited from lobbying the Administration for one year on matters for which they worked; and anyone who has lobbied in the last year is prohibited from working in the policy areas for which they lobbied. Transition team members will be subject to a “gift ban,” and Podesta also indicated they would need to sign an ethics code.

"These are the strictest ethics rules ever applied," said Podesta, who served as Bill Clinton's chief of staff for the last two years of his administration. Asked why they would keep lobbyists from working on policy areas for which they're deeply knowledgeable, Podesta said: "I've heard the complaint that we're leaving all these extra people on the side, that we're leaving all the people that know everything out in the cold. So be it. That's a commitment that is one the American people expect and one the President-elect made."