Nutrition support: Ethical and expedient, and who will choose?
Herrmann, Virginia M
Presidential Address
I am honored to have the opportunity to deliver the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) Presidential Address. When deciding the focus of my comments, I thought about A.S.P.E.N. as a society and what it has meant to me over the 20 years I have spent in this remarkable organization. Over those 2 decades, and even more so recently, I have watched, sometimes with intrepidation, as I am sure all of you have, the changes in medical practice and health care. We have become efficient, expedient, and because of shrinking dollars, more concerned with productivity and economics than ever before. As A.S.P.E.N. approaches its 25th anniversary and the next century, it seems a fitting time to set aside productivity and economics and reflect on the role of ethics in our various disciplines.
Before discussing ethical issues, perhaps some basic definitions would be appropriate. What is “ethics” and, specifically, what is “health care ethics?” John F. Monagie, President of the American Institute of Medical Ethics in Davis, California, defines ethics as “a pattern of values and norms that is `taken for granted’ in a given culture or professional or institutional setting.”‘ Doctors Garrett and Baillie describe ethics as “that branch of philosophy that seeks to determine how human actions may be judged right or wrong. The study of ethics implies that the human mind is the fundamental means by which actions may be judged, therefore ethics is not the same as moral theology or religious ethics, nor is it the same as the law.”2
Today, I would like to explore some of the ethical issues and decisions that face A.S.P.E.N. and each of us individually. Although we may think these are new issues, many were first discussed thousands of years ago. For example, a man familiar to us all, Hippocrates, who lived during the great age in Greece (460-370 BC) and is credited with the oldest medical code, the Hippocratic Corpus, suggested ethical decisions be based on “philanthropia,” that is that the physician would do good in an effort to preserve his own reputation. He favored a paternalistic approach and encouraged physicians to “perform these duties calmly and adroitly, concealing most things from the patient while you are attending to him. Give necessary orders with cheerfulness and sincerity, turning his attention away from what is being done to him . . . revealing nothing of the patient’s future or present condition.” Despite his recognition of the issues, Hippocrates would hardly be a champion of “informed consent!” Scribonius Largus, a physician to the Emperor Claudius (1 AD), encouraged physicians to base decisions on humanitas and misericordia, that is the love of mankind and mercy. Although throughout history, a number of medical caregivers, philosophers, and theologians have formulated and debated health care ethics, the real burden and obligation of refining these definitions rest with us-members in the medical community who are faced with the decisions. The impetus for the medical community to govern itself regarding medical issues should come from within our profession.3,4 Popular modern-day ethicists, Edmond Pellegrino and David C. Thomasma, base their approach on ideas from Aristotle and good clinical practice. They suggest that “our moral choices are more difficult, more subtle, and more controversial than those of [an earlier] time. We must make them without the heritage of shared values that could unify the medical ethics of [that era]. Our task is not to abandon hope in medical ethics, but to undertake what Camus called `the most difficult task of all: to reconsider everything from he ground up, so as to shape a living society inside a dying society’.”5 One of my personal favorites is the pioneer medical ethicist Joseph Fletcher, who synthesized “ethical” decision-making into one rule: “do what is most loving in the circumstances.” But even Fletcher had difficulty in formulating any guidelines as to what is “most loving.”
Time does not permit us to examine all of the issues facing us as individuals and as a Society, but I would like to explore several areas with you, areas and issues that particularly impact those of us involved with metabolic and nutrition support of the patient.
HEALTH CARE PROFESSION
The first of these issues involves the public’s and perhaps our own changing global perception of the “health care profession,” particularly in our current postindustrial society. The medieval professions were divided into three areas: (1) divinity (or theology), (2) physic (or medicine), and (3) law. These were the personal professions, all of which were founded on a client-counselor relationship; they did not produce goods for sale, but worked to guide, heal, and protect. The advent of the industrial society significantly increased the visibility and influence of the professions but at the same time, witnessed a depersonalization of the patient or client. During the Industrial Age, “productivity” was the standard by which all were measured. Care became fragmented, and patients were depersonalized and sometimes viewed as a collection of organs rather than a complex organism. Ivan Ilich studied underdeveloped countries and stated that the industrial model for organizing professions has restricted access to knowledge and skill, placing knowledge in the hands of the elite, in whom the public is increasingly dependent but from whom they receive less and less adequate service. As we enter the postindustrial society, the source of power will shift from economic ownership (either capitalistic or socialistic) to knowledge and its communication.7 The emerging technology of Information Systems is a good example of the change. This is a great opportunity for our professions to assume a greater role. The medical profession has historically used knowledge to remain powerful and elite and has fostered a dependency of the public on our profession. By sharing our knowledge, we do not become weakened but rather strengthen the bonds of trust with the public sector and make our patients more independent and responsible. My advocacy for change is not new. The President of the Association of American Medical Colleges, Dr Jordan Cohen, authored a recent editorial entitled “People Want Their Doctors Back.”8 He wrote, “As technology and now economics is introduced so prominently into the innermost sanctum of medicine, the essential transaction between doctor and patient is being threatened as never before . . . and medicine [is seen] as coming under the influence of big business and turning to assembly-line, clock-punching methods. That’s not what they want. They want to have their doctors back.”s
How do we give them their doctors back? To start with, we need to watch our language. Managed care and the business of medicine has introduced a number of terms, such as profit, competition, capitation, market driven, and market share, that contrast vividly with our own professional vocabulary that includes words such as service, advocacy, altruism, and humanism.9
We are not “health care providers.” We are nurses, dietitians, pharmacists, doctors, and scientists, with unique and individual contributions marked by our distinct but interwoven professions. We do not “deliver services to the client;” we give care. We practice medicine. Those who come to us are not “health care consumers;” they are our “patients.” We are not “under contract.” Our only contract is with our patients, a sacred one that transcends the legal agreement signed with managed care companies. And the ultimate profanity, in my opinion, is the idea of “covered lives.” We care for patientsindividual people who are ill, hurt, confused, and who trust us. They are not covered lives. So, let’s clean up our act and watch our language. Allow the others in managed care and administrative positions to babble among themselves, but let’s direct the language of our profession to say what we want to say: “I am your doctor (or nurse or dietitian), and you are my patient.” The choice is ours, whether we allow further depersonalization to occur or we transcend depersonalization for an even better profession and relationship with our patients.
PROFESSIONAL STANDARDS
I also want to talk for a few minutes about our ethical responsibility to maintain professional standards and competency.
Robert Merton defines “profession” by three principles: (1) knowing (requiring systematic knowledge and intellect), (2) doing (requiring skill and training), and (3) helping (in service of others).10 Moore and Rosenblum developed a scale to define professionalism and felt that professionals should rate high on all six of these attributes:11
1. Full-time occupation;
2. Committed to a calling;
3. Distinguished from the laity and identified with peers by “formal organizations;
4. Specialized education (lengthy and difficult);
5. Service orientation; and
6. Autonomy of judgment.
As health care professionals, we have a responsibility to learn the facts about a the medical condition; determine, in accord with an objective value system, the needs and rights of the people involved; and then come to a concrete decision despite disagreement or pressure from others, whether it be managed care, family members, peers, or others. The difficulty professionals face is that despite adequate attempts, we may not have all the facts or a clear understanding of the values involved; or, despite full knowledge, the best alternative may not be clear. However, we know that the human limitations in knowledge and resources can lead to two types of problems: (1) the chance of being wrong despite the best knowledge and intentions and (2) the need to make morally wrenching decisions in the face of incomplete information or inadequate resources.12 We say, “I am as sure of my decision as I can be, but I realize that I could be wrong.”13 As medical professionals, our relationship with patients must be based on trust, and in order to establish trust, we need not only real and genuine concern but adequate knowledge and skill and the ability to communicate.16 We need to acquire the art of medical dialogue, with both patients and peers. An important part of that dialogue includes peer discipline, for if we do not do this for ourselves, we can be assured that consumers and the government will do this for us.
The charge to us as an individual and a Society will be to maintain knowledge and skill. As a Society, A.S.P.E.N. must have a dynamic and flexible strategicplanning process that adapts to the changing health care environment. As individuals, we must continually be educated and support certification processes. Douglas Wilmore, in his 1989 Rhoads Lecture to this Society, made the following four recommendations to us: (1) learn the language of genetics and cell biology, (2) keep abreast of the new mechanisms of disease, (3) master and maintain computer skills, and (4) understand the scientific method.l4 A decade has now passed since Dr Wilmore delivered this lecture, and I don’t know about you, but I feel that I frequently fall short on all of these recommendations, although the challenge to us as professionals is clear. Your attendance at this Clinical Congress is evidence that you are aware of your own need to maintain knowledge and competency in your field. A.S.P.E.N. as a Society has supported, on every level, development of self-assessment tools, certification exams, and core curricula aimed at helping us as individuals and a Society maintain the highest of standards in the metabolic and nutrition care of the patient. We, as both individuals and a Society, need to continue our efforts in that arena.
INFORMED CONSENT
Earlier, I mentioned Hippocrates and his philosophy about what information should be shared with our patients. Today, just as in the time of Hippocrates, physicians are frequently confronted with ethical issues surrounding information sharing, or “informed consent” as we now call it. In 1973, the American Hospital Association put forth the Patients’ Bill of Rights, which can be summarized as follows:15
1. The right to the whole truth;
2. The right to privacy and human dignity;
3. The right to refuse any test, procedure or treatment; and
4. The right to read and copy medical records.
These rights all rest on the fundamental concept of informed consent. I am not speaking about the legal concept of consent but instead to a real partnership between patient and caregiver, with complete sharing of information and knowledge. The essential components of informed consent include justice, beneficence, and respect for persons. A number of legal documents, codes, and ethical manuscripts have been developed in this century that define and defend informed consent, including the Nuremberg Code, the American Medical Association code, the Helsinki Declaration, and most recently, the International Covenant on Civil and Political Rights (ICCPR) ratified by the United States in 1992.16 Informed consent is only a minimal way to protect individuals and honor their personhood. Essentially, informed consent defines the borders beyond which practitioners cannot go without the participation of the individual.17
Even as recently as 1982, physician responses to the definition of informed consent were in great contrast to its intended purpose. When questioned about the meaning of informed consent, physicians supplied the following responses:18
Informed consent, or informed choice, is difficult because the relationship between physicians and patients is ultimately unequal. Medical paternalism (“I know what is best”) must be balanced with patient autonomy. Informed consent relies on the integrity of the medical profession and the establishment of trust. The ethical and legal requirements for informed consent require that those with the knowledge and power (ie, the professionals) be continually critical of their own profession, be constantly aware of the changing needs of patients, and always act in accordance “for the patient’s good.”
But what about deception in medical practice? Does it have a place? Ralph Crawshaw, in In Search of a Modern Hippocrates, stated it bluntly: “To tell the truth, physicians lie.”19 Crawshaw described misleading by physicians and the medical community as beasts which are the true enemies of public trust. He divided deception into three areas:
1. White lies, which he called rabbits: Here is a white lie I am sure the nurses in the audience have at one time or another been requested to deliver: “The doctor is going to be a little late. He had a medical emergency.” Crawshaw asked us to consider that 35%40% of all prescriptions are for substances incapable of having the effect for which they are prescribed. And consider our usage of specialty nutritional formulae. I will leave these decisions to those of you in this society, who I am confident will arrive at truthful and ethical resolutions.
2. Institutional lies: wildebeasts. The author remembered the Soviet mandate of denial of knowledge to any patient with a fatal or terminal diagnosis. Institutional lies in this country now, particularly in the era of managed care, are much more subtle but insidious and may range from denial of care for absurd or unfounded reasons to refusal to accept responsibility for actions. I submit that rather than attempting to tame the wildebeasts, we hunt them out and shoot to kill.
3. Self-deception, or hyenas: These lies deal with the failure to critically analyze our own actions and acknowledge our own mistakes. These hyenas, although seemingly innocuous, are the most dangerous of all deceptions. Truth-telling is indispensable for caregivers. If real care is to flourish, there must be that special form of love for our fellow persons that we call “trust” and Scribonious Largus called humanitas.
RESEARCH INVOLVING HUMAN SUBJECTS
These issues of informed consent and deception in medical practice are close relatives of another area that confronts members of this Society regularly: the ethics of research involving human subjects. Understanding ethical issues surrounding human-subject research requires a recognition of the difference between medical practice and medical research. “Medical practice” is defined as interventions designed to enhance the wellbeing of the patient, with a reasonable expectation of success. “Medical research,” on the other hand, refers to activities designed to test a hypothesis, permit conclusions, and thereby contribute to the general body of knowledge.
A number of documents have been developed in this century to safeguard human subjects who participate in medical research. Probably the most famous of these is the Nuremberg Code. After World War II, the main trial at Nuremberg was conducted by the International Military Tribunal, made up of judges from the four allied powers (the United States, Britain, France, and the Soviet Union). Following this international trial, through American military tribunals, also at Nuremberg, the United States conducted 12 additional trials of Nazis from various sectors of the Third Reich. The first of these trials, the Doctors’ Trial, involved 23 defendants, 20 of whom were physicians accused of murder and torture of concentration camp inmates. The trial lasted from October 25, 1946, until July 19, 1947. Sixteen of the 23 were found guilty, 7 were hanged, and the rest were sentenced to imprisonment. The trial continually referred to the Hippocratic Ethics of “do no harm” (primum non nocere). These trials proved a number of things, but one that was more than the mandate “do no harm” was the necessity to safeguard research of human subjects. As a consequence, the Nuremberg Code was developed. This code is arguably the most important document in the history of the ethics of medical research.20-22 Physicians played a key role in the formulation of the Nuremberg Code, although its exact authorship is still in debate. The 10 principles established as the Nuremberg Code focused on the patient, not not the physician or society. These included an absolute requirement of informed consent (principle 1) and the right of a subject to withdraw from an experiment. Whereas Hippocratic ethics relies on the physician to determine what is in the subject’s best interest, the Nuremberg Code gives subjects as much authority as physicians to end research before its conclusion. Although effects of the Nuremberg Code on human rights worldwide has been substantial, it may surprise you to know that it has never been officially adopted in its entirety by any major medical association.21,22
The American Medical Association, since its beginning in 1947, has had a code of ethics that has been continuously reviewed and updated.23 Other articles have subsequently been developed, including the Declaration of Helsinki (1964), which focused on the obligations of physician investigators to research subjects;24 the United Nations international Covenant on Civil and Political Rights (1966);25 and the International Ethical guidelines for biomedical research involving human subjects, which was developed in Geneva.26
Congress established the Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (CPHS) in 1974. The CPHS published 10 studies during its four-year life span, which focused on research on fetuses, children, prisoners, and the mentally infirm. The Belmont Report was published in 1974 and sought to deal with informed consent and distinguished between innovative care and research.27 Congress then created the President’s Committee for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (PCEMR), which dealt with such issues as brain death, access to health services, withdrawal of life support, and testing for genetic disease. During its lifetime, this Committee published 10 studies on these subjects.
Despite these efforts, there have been astounding departures from ethical principles involving research using human subjects in the United States. You are all familiar with the Tuskeegee Syphillis Study. In the book Bad Blood, Jones called this study of untreated syphilis in the black male “the longest nontherapeutic experiment on human beings in medical history.”28 The original study group consisted of 399 black men with syphillis and 201 controls. Although the study was intended to last six to nine months, medical curiosity allowed a 40-year study that followed these men to what the study euphemistically called “end-point,” and what in reality was autopsy.31 Despite a 1972 Washington Star front-page article about the study, for 40 years, various medical personnel at all levels observed these unfortunate people, gathered data, and facilitated this “experiment.”
The United States also engaged in human radiation experiments between 1944 and 1974.29,30 Plutoniuminjection experiments at the University of Rochester and the University of California between 1947 and 1950. Total body irradiation experiments at the University of Cincinnati were conducted for over 10 years, until 1972. These studies represented serious breaches in the ethics involving research, and the Advisory Committee convened by President Clinton just released its findings in 1995!
Another appalling example involved our government and the Fernald School in the late 1940s and early 1950s. With the consent of the school’s chief administrator, physicians deceived parents of retarded children into giving permission for their children to join a “science club,” where children were given injection of isotopes. Whether the isotopes actually posed any harm is debatable. However, there is no doubt these parents and their children were exploited by the medical profession and others. All of us have an ethical and moral duty to be certain that these sorts of departures from ethical research involving human subjects will never happen again.
What have we learned? Have we learned anything? Are we making another mistake with the ever so popular “Outcomes Research?” Outcomes research involves the following:
1. Defining what the outcome is;
2. Measuring or adjusting for severity; and
3. Evaluating the results of that outcome.
Spiraling health care costs, which threaten to reach the $1 trillion level, have pressured the government, corporations, smaller businesses, and insurance companies to demand a change from the traditional fee-forservices system. Although the health care reform plan initiated by the current administration failed, this void was immediately filled by managed care (ie, PPOs, HMOs, point-of-service plans, etc). A central question has emerged: is the role of health care professionals and other gate-keepers to observe the corporate bottom line, or to optimize patient outcomes?31
Outcomes research data have become the core strategy of managed care. Minimal ethical questions arise if we are simply tracking what happens to patients. However, issues of reimbursement and patient referral make outcomes research much more complicated, at least ethically. Increasingly, large clinical studies are being encouraged in an effort to develop clinical guidelines. Specifically, in the area of metabolic and nutrition support, our outcomes may not primarily be survival, disease-free interval or length of ICU stay, but rather may focus on more subtle aspects such as quality-of-life issues. These “outcomes” are subjective and often costly to managed care, but they are the very essence of what we are about as a Society. Although outcomes research attempts to portray medicine as a management science, we in A.S.P.E.N. recognize, as did our ancestors, that there is an art to the practice that distinguishes medicine from “widget-making.”32
An article in The Wall Street Journal in 1995 by a nonphysician director of a health care data-analysis and research firm described “a healthy patient as a unit of production, and for all the units of production, there is an optimal production function which can be calculated . . . and in the end there emerges a simple truth about a singular patient’s situation: one clinical approach is clearly better, more cost-effective and less risky . . . more pointedly, the data base knows which providers did the best job on their share of those 100,000 patients.”33 This depersonalization of our patients (referring to patients as units of production) and of ourselves as caregivers (having our care described as optimal production functions) is frightening and threatens our very core as a profession and society and should be responded to with rage by all of us in this room. Particularly in the field of metabolic and nutrition support, where research involves nutrition-a substance seen as a patient ‘right’-it is extremely important that we pay attention to ethical concepts in our research. Considerable thought and care should be given when we embark on studies involving elderly persons, particularly those in nursing home situations; patients in VA hospitals; or any group who may be disadvantaged and either emotionally or physically vulnerable. Be certain that our research is just. Be kind and benevolent to these precious people.
WITHDRAWAL OF CARE AND ASSISTED SUICIDE
A discussion of ethical issues facing this Society would not be complete without at least briefly addressing two other issues that have received much attention in the public domain: (1) withholding or withdrawal of support and (2) assisted suicide. Part of the difficulty surrounding these issues is the controversy of whether suicide is right or wrong. This is not a new controversy. Mosaic and Old Testament law frequently dealt with suicide. Public opinion and experience in this country highlight the controversy and resulting dilemma (see Table 1).34,35 Many who believe that assisted suicide is justified or legal are less willing to perform this act (see Table 2). More recently, voters in Michigan voted down the assisted suicide law. A clear majority rejected the proposal that would have allowed doctors to legally prescribe lethal doses of medication for patients who are terminally ill.
Despite the intimate involvement of the patient, the family, and physician, these two entities have become disenfranchised, and the decision rests in the hands of the legislature, courts, or even a single judge. In 1996, the federal courts on both coasts made clear decisions regarding the issue.36 The second circuit court of appeals stated, “The state has little interest in the prolongation of a life that is all but ended . . . the ending of life by [the withdrawal of life support] is nothing more nor less than assisted suicide.”37 At the same time, the ninth circuit court of appeals declared, “We see no ethical or constitutional cognizable difference between a doctor’s pulling the plug on a respirator and his prescribing drugs which will permit a terminally ill patient to end his own life.”38 The courts exert a greater influence than any other sector and unfortunately control more than the individual.
However the dilemma that faces those of us in this Society more frequently is that of withholding or withdrawing care. A number of landmark cases in the United States have addressed the right-to-die issue.
Two landmark cases in Missouri involved Nancy Cruzan and Christine Busalacchi.39 The families of both of these Missouri women, who were in a persistent vegetative state, waged lengthy battles in court to allow withdrawal of tube feeding. These cases prompted one medical ethicist to comment, “I find it odd that the most famous people in Missouri are in the persistent vegetative state.”40
We often use the terms “ordinary” and “extraordinary” to describe nutrition support interventions. Whether care is ordinary or extraordinary should not be the determinant of whether the patient or family accepts or declines therapy. These terms are confusing. “Extraordinary” has inartfully defined care that is unusual, complex, invasive, or expensive. Historically and ethically, however, extraordinary is used to denote care that imposes a burden to the patient that is disproportionate to its benefits.41 Issues of withholding vs withdrawing have also been confused. Often, caregivers are comfortable with the refusal of treatment but are very uncomfortable with the cessation of a lifesustaining treatment (eg, tube feeding) that has already been initiated. Never initiating therapy, people argue, is more acceptable because it involves an ommission rather than a commission. Although the distinction between withholding and withdrawing seems obvious, it is easily blurred. If a feeding tube falls out and we fail to replace it, are we withholding or withdrawing? The distinction is more linguistic than ethical or moral. Withdrawal of treatment currently involves explicit decisions that are discussed extensively, and although withdrawa’ of treatment may create more anxiety and invite external review and critique, it is not ethically different from withholding of treatment.
Time does not permit me to devote the proper attention that this issue deserves, and many of these questions are highly debated even among ethicists, theologians, and health caregivers. Many A.S.P.E.N. members and researchers have devoted their efforts to end-of-life care, making patients comfortable, and supporting both families and patients in the last phases of terminal illness, thus obviating the question of assisted suicide. A.S.P.E.N. as a Society, over the years, has invited and sponsored speakers, symposia, workshops, and keynote addresses dealing with these ethical issues. In 1989, A.S.P.E.N. cowrote and submitted an amicus brief on behalf of the Nancy Cruzan family, supporting the withdrawal of tube feeding. I commend this Society for its past and present efforts in this regard, and it is my fondest hope you all share in this pride as well. Please be assured, we can make a difference.
ALLOCATION OF RESOURCES
The last area I want to address, which has arguably become one of the most consuming topics in health care today, is the allocation of resources, or appropriation of health care dollars. The ethical issues that surround this topic range from subtle to blatant. In 1929, the United States spent $29.49 per capita on health. Expectations from the public, as you might imagine, were not high. By 1950, the U.S. health care bill was just less than $13 billion, representing 4.4% of our gross national product (GNP), or $82 per person. By 1984, expenditures had reached $387 billion, representing 10.6% of the GNP and just under $1600 per capita.42
Today’s health care bill exceed $1 billion per day in the United States and represents a percentage of our GNP that exceeds almost any other country in the world. The amount spent on health care continues to increase each year.36 Are we spending these dollars where they should be spent? Famous ethicist Edmond Pellegrino asks us to consider that, annually, $2.5 billion is spent to maintain 70,000 patients with chronic renal disease, $4.4 billion is spent on heart and liver transplantation, and over $2 billion is spent on neonatal ICUs for 230,000 babies born who weigh less than 2500 grams, only 50% of whom will survive.43 Many of our costs, as you know, relate to end-of-life technology. Eighty percent of patients who die do so at great cost within a hospital, compared with 50% in 1949 and an even smaller percentage in 1900.
These costs should be balanced among other expenditures that Pellegrino noted we make willingly:43 annually in the United States, we spend in excess of $40 billion on alcohol, $30 billion on smoking, $65 billion on cosmetics, $65 billion on advertising, and $3.7 billion on potato chips. I needn’t tell you in this society that decisions regarding how money should be appropriated are complex and, increasingly in the United States, involve less input from health care professionals. If we are to ethically and responsibly “ration” health care, it is imperative that we seek every opportunity as an individual and as a Society to speak out. A.S.P.E.N. has dealt head-on with a number of these issues and has influenced decisions at the national level, including: enteral nutrition coding and pricing, regulation of medical foods, HCFA’s proposed rule on provision of nutrition care to hospitalized patients, and the role of the dietitian in this endeavor.
But we need to do more and do better. In July 1984, the governor of Illinois signed a bill passed by the state’s legislature entitling every citizen up to $200,000 in state funds to cover the cost of any organ transplant not covered from other resources.44 At that same time in Chicago, over 30% of Chicago’s children were living in poverty; the previous two years had seen an increase over 20% in the number of children admitted to Chicago’s municipal hospitals with diarrhea, dehydration, and failure to thrive; and 60% of African American preschoolers were not immunized against polio.44
Unfortunately in the United States, racism and an overemphasis on freedom have reinforced the inequities in access to health dollars and coverage during illness.45 Current estimates suggest that the future workforce of the United States will be increasingly composed of minority Americans, yet these are the individuals that have the most difficult time accessing appropriate health care. A disproportionate number are underinsured or have no insurance at all. These groups have greater infant mortality, lower life span, and increased complications.46 This group has more disability days and more chronic illnesses. By all estimates, our workforce, on which we are becoming increasingly dependent, will be less healthy and, as a consequence, the United States will be less competitive. As Plato warned us, “A society that is always going to the doctor is a sick society.”47,48 Just after the turn of the century, Lloyd George recognized this problem in his comment on Great Britain’s National Health Insurance Program in 1911, which was established to “maintain a healthier and more productive work force and army.” Lloyd George remarked, “You cannot maintain an A-1 empire with a C-3 population.41
I cannot overestimate our responsibility in these decisions regarding health care dollars and appropriation of resources. If you think you do not have an impact as a Society or an individual, you are wrong. Consider these figures: the National Institutes of Health (NIH) 1998 budget allotted $2,962,994,000 for cancer and $1,602,814,000 for HIV/AIDS. The 1999 projected budget is similar. The amount allotted for HIV/AIDS exceeds the amount for any particular cancer, including breast, lung, colorectal, and prostate cancer, although the annual death rate from any one of these cancers greatly exceeds the annual death rate from AIDS.50,51 Perhaps the expenditure for AIDS is justified by the contagious nature of the illness, and by no means do I suggest that we spend less for this malady. But it is equally clear that the decisions of how health care dollars are spent are greatly driven by vocal special interest groups and the media. A.S.P.E.N. as a Society and all of us as individuals need to participate where we can in these decisions.
To further complicate this issue, what is our responsibility as a society beyond our own country? Between 1990 and 1994, there has been an ageadjusted increase in mortality of nearly 33% in the Soviet Union, presumably because of unstable governments that arose with the break-up of the various republics.52 Life expectancy declined by more than six years in men and by more than three years in women. Nearly two thirds of the decline was attributable to an increase in cardiovascular disease, stroke, and trauma. At the same time, life expectancy in the United States increased for both men and women, with a decrease in the deaths from cardiovascular disease and stroke.53 What is our responsibility as a nation to other countries? How is this altered when you consider that the African American men and women still lag behind whites in life expectancy in the United States (see Table 3)?53 I do not presume to have the answers to these questions, but I know that in this society, we have a part in resolving these questions in an ethical manner.
CONCLUSION
I have attempted to present some, but by no means all, of the ethical dilemmas that, everyday, confront this society. I leave you with the following recommendations: as individuals, I suggest you read the newspaper, everyday. With the increasing demands on our time and the everexpanding body of medical knowledge, most of us barely have time to read our specialty medical journals. But our world is too vast, too diverse, and too important to ignore. We cannot possibly make informed decisions and have an impact unless we know what is going on. Read at least portions of the national and international news. Get to know your community and the international issues and crises that face us all and impact on our delivery of health care. As a Society, I commend A.S.P.E.N. for its responsiveness to public policy and ethical issues.
At some point, join the Ethics Committee of your hospital or organization. Play a part and contribute to the Institutional Review Board at your institution. You will learn a great deal, but more important, you will contribute to the welfare of your patients and to the overall health of our profession.
And last, tell the truth-to your patients, your colleagues, and most important, to yourselves. Honest introspection will mature you as individuals and safeguard the trust that your patients place in us everyday and will elevate your work to the level of professionalism that it most certainly deserves.
I thank you all for the opportunity today to address you and to have served this past year as your President.
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Virginia M. Herrmann, MD, CNSP
Department of Surgery, Washington University School of Medicine, St. Louis, Missouri
Received for publication, May 19, 1999.
Accepted for publication, May 19, 1999.
Correspondence and reprint requests: Virginia M. Herrmann, MD, CNSP, Washington University School of Medicine, 660 South Euclid Avenue, Campus Box 8109, St. Louis, MO 63110.
Copyright American Society for Parenteral and Enteral Nutrition Jul/Aug 1999
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