Introduction to a New eSection -- Bioethics

Erich H. Loewy

Disclosures

At this time, I would like to introduce the new eSection called Bioethics. This field is assuming ever more importance as new techniques or drugs are developed simultaneously -- and not only because of these new developments has the cost of medical care increased. Most medical conferences now devote some time to ethics; most medical journals -- whether they be eJournals or hardcover journals -- devote some space to ethics-related articles; and the field itself has developed a number of excellent publications. Bioethics and bioethicists do not as much seek to give answers as to ask questions, clarify concepts, and ask about the validity of prior assumptions. Bioethics deals with:

1. Problems at the bedside, ie, problems that physicians have with the care of particular patients. Every case has some unique feature, and generic answers generally do not apply to individuals. In other words, problems applying to "known lives."

2. Problems that apply to specific patients but are more generic and tend to deal with discussing them as problems with "unknown lives," such as euthanasia, physician-assisted suicide, abortion, informed consent, confidentiality, autonomy/paternalism, and the healthcare professional's relationship with patients and each other, decision-making capacity, and many other such problems.

3. "System problems," ie, those problems for healthcare professionals arising out of the structure of any given "system" -- be it the rules of a particular institution, managed care and health maintenance organizations (HMOs), Medicare and Medicaid, etc. Unavoidably, we will have to deal with the fact that physicians are ever more frequently confronted by having what they consider to be necessary examinations or types of therapy denied because the patient "does not quite meet the criteria." It becomes an ethically terrible decision: Stretch the truth a little to meet the criteria, or forego the examination or therapy until the criteria are met. In other words, do we abandon our age-old promise to do "the very best that we can for the patient" who agrees to have a particular test, treatment, or procedure done, or, bluntly, do we lie -- a very dangerous habit to foster, especially in healthcare professionals.

4. Problems of social justice that range from poverty, racism, crowded living conditions, and lack of education (all of which have been implicated in the incidence of disease) to the ever-growing number of persons without access to medical care or medications either because of a lack of insurance or a lack of money to meet copayments, even when they are insured.

5. Problems of experimentation with humans and animals as well as experimentation not to help understand or cure a disease, but on the contrary to produce drug-resistant organisms or a new type of gas for warfare to kill more of the "enemy."

6. Shifting relationships among the various members of the healthcare team.

There are some excellent textbooks that try to introduce the elements of the subject, and there are some superb books dealing with specific problems and a large body of literature dealing with specific aspects. Most of this can be found with Entrez PubMed, Google, or Google Scholar.

I think that we first have to be clear about what ethics is and how it could help in individual cases, in crafting institutional policy and in participating in a national effort to provide a fair and equitable system of healthcare for all within our borders. Ethics is not a coffee-cup exchange of unfounded opinions but has its own body of knowledge, literature, precedent, and method. I do not claim that ethics depends on reason alone -- as neuroscientists have shown that interplay between emotion and reason are vital so that a "good" decision can be made. Damasio (Iowa), LeDoux (New York), and Roth (Bremen) have all shown that patients otherwise recovered but with their emotional centers destroyed or separated from their cognitive centers, can solve logical problems, and can make decisions as before -- but their judgments will be bad, self-destructive and they seem incapable of learning from them.[1,2,3,4] Bioethics uses a philosophical method to examine medical, social, or public health problems that, of course, presuppose some understanding of these fields. A discussion about an ethical problem is a disciplined discussion that bases its resolution on the involvement of many fields, each of which has something to contribute. I hope that this eSection will be enlivened by comments, including disagreements, questions, and other audience participation. It is rare, if ever, that we are entirely right, and we should discuss questions with the hope of learning and perhaps contributing. Personally I learn more in discussion with my peers than I do either in the lecture hall or in reading a paper.

Medicine is a social task, and as a profession, we are well aware of the role that social and environmental conditions play not only in the development and therapy of disease, but also in our ongoing learning.[5,6] Likewise, medical students -- despite the outrageous tuition charged -- have a good bit of their training subsidized by the community, learn from the dead and in the clinic from very much alive patients whom they ask questions, and examine body parts that no ordinary layperson would dare to do. Our responsibility in the social parts of medicine certainly does not compel physicians to act as social engineers nor does it make them responsible for alleviating these conditions, but it does plead that physicians have obligations other than the care of the individual patients: We as a group have not only the obligation of every citizen in a democracy, but we as experts in the domain of health and disease have an obligation to point out these associations, advise, and participate in shaping an institution in which physicians are free to practice quality medicine without lay interference. Virchow, the father of pathology and a social activist, always said that "physicians are the proper advocates of the poor." [7] Likewise, because just institutions rarely if ever can be constructed in an unjust society, we have an obligation -- as citizens and as (still) respected voices -- to help structure a society in which social conditions do not increase disease. Aristotle long ago held that one couldn't separate ethics and politics.[8]Ethics without politics is often functionless, and politics without ethics is dangerous. The single "I" cannot be effective: We can speak with patients, students, colleagues, and friends; we can lecture and write, but that alone is unlikely to change things. Only when an individual sees himself or herself as part of a like-minded (or at least similarly minded) group of individuals can a real difference be made.

Ethics is not the same as personal morality. When we disagree about the treatment of a specific disease, we do agree on an authority that will give us the right answer. When, however, we disagree about ethics, there is no "authority" that we can generally agree upon. We come from different backgrounds, different (or no) religious convictions, and different experiences, and, therefore, we are apt to hold quite different views about what course of action is ethically acceptable. We are left either with imposing our moral views on another because we have the power to do so or to discuss the matter with logic, experience, history, religion, and precedent to help guide us in our actions. However, such a decision does not become the final word of what to do in such a situation: It has allowed us to act and compelled us to continue to think about the situation, so that next time when a similar situation is encountered, we can hopefully act a little better.

Ethics -- whatever the particular preceding adjective, such as medical, legal, etc, may be -- is not an exchange of unfounded, even when deeply held, opinions. Conventional medical training (which these days includes healthcare ethics) does not make persons either healthier or more ethical; it merely provides the tools with which to deal with a patient's problems and the admission to oneself that a particular problem may need the advice of a specialized individual.[9] In general, when an ethical problem in medicine (practice or structure) exists, there is no answer that is "good" in itself: Only alternatives generally range from the poor to the terrible. To prematurely stop treatment (or not to start treatment) of sepsis is not in itself a good thing to do. However, in a patient riddled with metastases, in very great discomfort and wishing that it were all over with, not treating may be the best of available alternatives. To fail to make available a medication or procedure that has a 5% chance of sustaining the life of a patient for 10 days is not good, but it certainly is, in a society with limited resources, perhaps the best of the available options, and it is a decision that society and not the physician at the bedside (who is committed to do everything for his or her patient) can be expected to make. There remain many situations in which physicians are inevitably involved in "rationing" resources -- "the last bed in the ICU [intensive care unit]" is a fine example.

There are 2 distinctive, irreconcilable beliefs about ethics. The one holds that principles are discovered and, therefore, not prone to human manipulation. Whether based on religious belief, culture, and precedent; on "natural law" philosophy; or on political fanaticism, they are not something that can be logically "proven" (that is, verified or falsified) but are simply there to be accepted. The authority for the religious is a book or a particular head of a religious community; for the secular it is a self-evident law of nature and needs no further proof to be accepted or, at times, also refers to a book (for instance, Marx). The problem with this particular type of belief is that it blindly follows a "party line" and virtually obligates "believers" to persuade and even to force others to accept their particular worldviews. The essence of ethics is the agony of decision making far more, perhaps, than the specific decision made. A decision that is prepackaged for all cases of "x" is as fitting as "one size fits all" clothing, and just like clothing generally ends up not really fitting anyone well.

The other worldview about ethics holds that ethics -- like all other human endeavors -- are crafted in and vouchsafed by community and are at all times shaped by the context of a particular situation. It is an ethic that has been first written about by John Dewey and in essence says that dealing with ethical issues is not substantially different from solving other human problems. We invoke a number of ethical theories, religious points of view, history, experiences, etc, to make an "indeterminate situation more determinate.[10]" This does not mean that it is "solved" for all time, but that at the moment when we must act, it can help us choose the least bad among several alternatives. After that, we learn from the consequences of our actions. We have not created a solution to be used the next time when we are confronted with a similar case, but by making the indeterminate somewhat less indeterminate, we continue to be obliged to learn more in the never-ending quest for improvement. It is an evolutionary ethic.[11] Further, it is an ethic that is highly mindful of the context and is not -- like other ethical theories tend to be -- a "cookie cutter" imposed upon the problem but is determined by the very shape of the problem itself. We are involved in the problem, not exterior to it, and thus we ourselves are changed in the process.[10] It is not an ethic that provides people with more than a very broad set of rules or principles and demands of us that we think things through; are sure to have our facts straight; marshal and consider the various theoretical, historical, and experiential facts that may bear on the case; talk to others whom we respect; and in the final analysis realize that we are responsible for our actions.[12,13]

There is another "school" of ethics that is founded on Hobbes and enlarged upon in general ethics by Nozick[14] and in medical ethics by Engelhardt.[15] These views are heuristic devices to explain the point being made. In Hobbes'[16] view, humans in the "original position" lived lives that were "solitary, brutal and short." We were out to murder, rape, and steal from one another, but evading this took up so much of our lives that we finally made a "covenant with one another that promised not to directly injure one another." As long as what we did not directly harm another, we were free to pursue our interests. Helping one another was not a moral obligation but took on an almost aesthetic quality: We did it either because it made us feel good or because we belonged to a moral enclave that demanded such an action as an obligation of membership. Our moral enclave was free to sanction us, but beneficence was not an ethical obligation. Because men are apt not to keep to contracts, a sovereign with absolute power (except to kill us) was a part of the bargain.[16]

In general ethics this amounts to an ultraminimalist government whose task is limited to defense from other nations, prevention of crime, and the strict adherence to voluntarily entered contracts. Licensing professionals, pure food and drug laws, healthcare, welfare, etc, are the individual's business -- caveatpreemptor is carried to its extreme. In healthcare ethics, the patient and the physician are obligated one to the other purely by contract: The physician has to do the best that he or she can for the patient and the patient has to pay. When either fails in that obligation, there is no obligation: The physician has no obligation to the patient who falls on hard times and cannot pay. Likewise, the community has no responsibility to aid the sick: Illness is unfortunate and regrettable, but because it was not caused by community, it is not the community's obligation to provide a remedy. In fact, Hobbes[16] and Engelhardt[15,17] goes so far as to say that the community as well as medical ethics are underpinned by entrepreneurialism.

This, of course, is not only revolting, but is also unrealistic. (None of us could ever have survived or attained our present position without the help of others, and a world in which such an obligation does not exist is one sullied by the wealthy ruling all others.) Entrepreneurialism cannot underwrite community. That inverts the pyramid because a community is necessary if entrepreneurialism is to take place. Such societies cannot exist any more than can a strictly communist one. In the communist society, the individual counts for nothing and the community for everything; in the crassly capitalistic society, the community counts for as little as possible and the individual for everything. Both end up with hordes of poor, unsatisfied, and suppressed people and both are eventually self-destructive.[18]

In a frequently neglected book, the Israeli philosopher Amishai Margalit[18] argues that the more just a society is, the more that it will avoid disparaging its members. By this, he does not mean overt insults but living conditions that create poverty, do not provide sufficient education to realize one's talents, do not give access to medical care, etc. A community is built of the individual members, and their being able to develop their talents ultimately benefits community. Thus, individuals and their communities are inextricably meshed with one another; no matter how wealthy, living in an impoverished community adversely affects even the wealthy. Such communities lack solidarity and will eventually shatter.[19,20] The failure of an individual within a community inevitably weakens community, and for its own sake obliges community to stretch out a helping hand. Without a community whose solidarity is strong, individuals will be left to their own devices, and when they once fail may very well perish. Solidarity is severely reduced when individuals realize that in case of catastrophe they are virtually left alone.

We all share a framework of inevitable human capacities and experiences that form the framework within which personal moral beliefs can function and within which basic ethical principles are created in dialogue with one another.[21] These capacities and experiences are neither principles nor natural laws but are the inevitable framework of which we as coequal humans shape our ethics and adapt it with changing knowledge and circumstances. Of course, and like everything, it presumes that these questions cannot be "solved" by power, that every human has the same value, and that those who cannot speak for themselves have someone to speak for them and enjoy our special protection.[22] There are at least 6:

1. We all -- except in rare circumstances -- have a desire to be;

2. We all have biological needs -- we all need food, shelter, etc;

3. We all have social needs -- different as these may be, somewhere along the path of life we need one another;

4. We all want to avoid unnecessary suffering;

5. We share a common sense of basic logic -- we know that we cannot be in 3 places at one time; and

6. We all want to develop our talents and pursue our interests.[19]

This does not seem like much to go on. However, in setting basic rules, we will inevitably have to agree not to damage the components of each other's framework: We cannot murder one another, and we cannot (as far as possible) allow our fellow beings to go without the necessities of life. In our Western society, we are bound to provide free access to education and healthcare so that we all have a fair opportunity to avail ourselves of the various, desirable opportunities that our society offers.[21] Beyond this, we would have to agree to have tolerance for moralities that are different from ours as long as they fall within that broad framework. Female mutilation, slavery, torture, imprisonment without immediate access to legal aid or laws, and customs that discriminate against certain religions or races would not be tolerated within such a framework. Tolerance has to be broadly based, but it also has to be limited by the agreed upon rules within that framework.

The problems of medical ethics, then, range from the structure of our society in which individual institutions (hospitals, clinics, etc) are built to the problems that individual practitioners encounter in dealing with their patients. The balance between autonomy and beneficence; the problems of informed consent; the questions of how we define futility, advance directives, orchestrating the end of life; and the perhaps more banal but probably far more frequent problems that occur in daily office practice need to be discussed, thought about, and examined from various viewpoints. They are far from being as flamboyant as, for example, the Terri Schiavo case, but they may ultimately be more important. Most important of all are the questions of social justice ranging from equal access to all who are legally within our borders to those conditions that increase the incidence of disease -- poverty, hunger, homelessness, poor education, and an ever-growing gulf that yawns between the least and the most paid to employees of any large enterprise.

I hope that in this eSection we will, besides the important ethical quandaries that confront us daily in the hospital or office, also pay attention to medical systems and questions of social justice, because it is most difficult to practice ethical medicine within a system that fails to give physicians the necessary elbow room to practice ethical medicine, and it is virtually impossible to create a just system in a basically unjust society. Shrugging such failure to supply prevention and care must not simply be shrugged off as a system error -- they must be recognized as such. Data need to be collected so that these injustices transcend the level of anecdotes, and then the public, the media, and the legislature need to be confronted with them. There is no doubt that these statistical facts about "unknown lives" need to be illustrated by the anecdotes of "known lives"; that is undoubtedly necessary to make them seem real. However, the particular should be used to illustrate the general, not the particular to define the general.

Known lives appeal to our emotions before we invoke reason to understand what is going on. Known lives are persons who are either known to us directly or are known through persons who we know directly. Joyce -- whom we have known for years or who is a close friend of one of our friends -- who develops leukemia speaks to us quite differently than does a statistic telling us that X% have leukemia. When we are confronted as Joyce's physician at the bedside, we are inclined to feel quite differently than we do about the 1000 unknown choices about whom allocation decisions must be made. Here we tend to approach the problem with reason and much less compassion. We must, I think, realize that unknown lives are a fiction: They are not unknown; they are merely unknown to us. To their loved ones, to their physicians, or to their grocers, they are as well known as these others are to us. Only by tempering our compassion with reason (what I have called "reasonable compassion") can we deal with the Joyce who we know; only by tempering our reason with compassion ("compassionate rationality") can we balance reason and compassion. To make unknown lives real for us, we need curiosity and imagination -- curiosity to ask, "How would it feel to have leukemia?" and imagination to go a few steps toward answering such questions.[19]

On graduating, physicians in most countries take an oath that is loosely modeled on the Hippocratic oath but differs slightly from school to school and from year to year. Sometimes the students themselves write these. Whatever particular oath we take, we promise to do the best for patients regardless of race, creed, nationality, or social conditions (which, of course, include finances). We know that we cannot do this for patients who are uninsured or are sent away before the physician ever sees them in most HMOs and managed care organizations (MCOs) or clinics. The fact that "they can go to the ER [emergency room]" does not do that oath justice. We know that many of our patients cannot afford to buy the medications that we prescribe or have the procedures that we suggest. As physicians, we have, I believe, 2 obligations: (1) to do the best that we can for an individual patient (and the definition of "the best" will form the subject of many papers, we hope) and (2) to help as citizens and as healthcare professionals to create an acceptably just medical system to which all who need medial help have access and are enabled to receive the necessary tests, x-rays, medications, or procedures in the context of a just society in which disease is not increased by social conditions, such as stark poverty, hunger, or hopelessness.[19,23]

Problems of experimentation come in various categories:

  • Trying a new drug on patients who have the particular disease for which this drug is tailored. These, in turn, may be phase 1, 2, or 3 trials -- each presenting rather different problems.

  • Trying a new drug that looks more promising than the old and dividing the group in two: One gets the "old" type of treatment and the other the "new." Here, the fallacy of believing that the new is a priori better than the old must be guarded against.

  • Producing an illness in order to test various ways of treatment.

  • Using a patient who lacks decisional capacity as a result of his or her state -- children, the mentally retarded, patients with Alzheimer's disease, etc. One must keep in mind that unless drug testing is done on such subjects, no progress can be made.

  • Doing experiments in healthy or sick subjects who lack decisional capacity in order to discover important physiologic facts. For example, what are the pH changes in the stomach content relative to older children, or do patients with Alzheimer's disease have changes in their cerebrospinal fluid?

  • Purposely attempting to produce a virulent antibiotic strain of bacteria or producing some other biological weapon (usually a gas) that can be used to kill as many of the enemy as possible or increasing the destructive power of atomic energy to the same end.

This introduction is a loud call for papers as well. We also invite online or off-line questions, and often will answer with more questions because none of us has "the answer." However, we hope that further questioning and careful discussion will illuminate problems and cases.


Readers are encouraged to respond to George Lundberg, MD, Editor of MedGenMed, for the editor's eye only or for possible publication via email: glundberg@medscape.net

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