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Proc (Bayl Univ Med Cent). Jan 2004; 17(1): 73–82.
PMCID: PMC1200643

The history of institutional ethics at Baylor University Medical Center

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Robert L. Fine, MD

The discipline of clinical medical ethics guides both the moral stance of the total institution as well as the specific ethical decisions of physicians, nurses, and other health care providers. None would quarrel with the fact that a health care institution as a caring entity must have an ethical stance. This is made necessary by the obvious distinction between the pragmatic question of what can be done to patients within modern health care and the ethical question of what should be done for patients. The notion that an institution's ethical stance might be determined by a set of ideas rather than the needs of a particular vested interest is not always so obvious. It is nonetheless true that ideas drove the formation both of this great institution and the institutional ethics committee (IEC). As John Maynard Keynes wrote in 1936, “The power of vested interests is vastly exaggerated compared with the gradual encroachment of ideas… Soon or late, it is ideas, not vested interests, which are dangerous for good or evil” (1). In our case, the ideas in question have served to promote a higher good.

The Rev. Dr. George W. Truett set forth a challenging idea in 1903, at the founding of a new, small, community hospital, the Texas Baptist Memorial Sanitarium, which during the following century grew and developed into Baylor University Medical Center (BUMC) and Baylor Health Care System (BHCS). Dr. Truett's prophetic challenge was to establish “a great humanitarian hospital, one to which men of all creeds and those of none may come with equal confidence.” The idea of creating a humanitarian institution for the sake of patients first, as well as ethical positions articulated by the institution's trustees, physician leadership, and senior administrators, set the standards that guided physician practice and institutional care for 6 decades.

However, a more specific idea about medical ethics and its proper role in day-to-day clinical practice would be introduced in due time and would have a more profound impact on the ethical stance of the institution than any idea since Dr. Truett's prophetic words of 1903. This idea was to create a multidisciplinary ethics committee designed to serve the needs of patients, health care practitioners of all disciplines, and the community as a whole, rather than the needs of powerful vested interests. By first serving these other groups, the traditional interests of the trustees, physicians, and administrators would ultimately be better served as well.

DEFINITIONS OF CLINICAL MEDICAL ETHICS

It is inappropriate to speak of a history of medical ethics at Baylor without first examining the nature of medical ethics itself. Clinical medical ethics has many acceptable definitions. Most simply, it is the discipline that deals with what is good or bad, right or wrong, about the ends of medicine and the means used to achieve those ends. But how are we to understand such valueladen concepts as good or bad? The branch of philosophy known as ethics relies on a variety of theories or methods of analysis to help determine right and wrong. Some of the more common ones are deontological, consequentialist, casuistic, and narrative.

These formal methods of ethical analysis and reasoning more often than not get us to the same ethical endpoint. They are useful to those who formally practice or teach clinical ethics but are of less value to the average practitioner or reader and may be reviewed elsewhere. For our purposes, it is sometimes easiest to understand what we mean by clinical medical ethics when we explore the concept in relation to science and technology, law, politics, human behavior, and religion or spirituality. In its purest form, science may be thought of as ethically neutral, neither good nor bad. When scientific knowledge is applied through a piece of technology, however, it is applied toward some end or goal. It is at this point that values, ethics, and morality come into play. For example, when we say we understand the laws of gas exchange and the mechanics of ventilation (both morally neutral), we may apply that knowledge through a mechanical ventilator. When ventilators are used for a short period of time for a patient who is temporarily unable to oxygenate adequately or ventilate on his own, all would agree that such “artificial” life-sustaining treatment is good.

But what if the patient has either a terminal or irreversible condition and the ventilator serves only to prolong dying or only to keep the patient alive “indefinitely” in a state of permanent disability and dependency? Different persons will answer such troubling questions in unique and distinct ways. Those who practice medicine by technological imperative try to take the stance that because they can use a given technology, they must always use that technology, no matter the other circumstances. This type of reasoning, although quite common within the healing professions in the 1960s through the 1980s, has proven to be an ethical oxymoron and has fallen into total disrepute among most practitioners.

Others may look to the law for guidance. Certainly, law and ethics are related, but law might be seen as reflecting only the governmentally sanctioned ethical norm. The flaws here are obvious. After all, we would all agree that slavery is unethical, and yet at one time, it was quite legal. In addition, the process by which we derive our laws moves much slower than the progress of medical science that is at the root of so many ethics challenges. The law cannot anticipate and have a timely answer for every ethical question. The law is, of course, politically derived, and thus, there is a political component, at least at the societal level.

Others may approach moral questions not by appealing to the law but by appealing to their own intuitive sense of right and wrong. Emotions and human behavior clearly play a role in these circumstances. Indeed, recent studies using functional magnetic resonance imaging techniques, which allow researchers to examine which part of the human brain is active during various cognitive tasks, clearly demonstrate the role of human emotion in moral reasoning, much to the dismay of some who sought to reduce moral decisions to pure logic.

Finally, many will appeal to their own religious worldview in trying to face a question of ethics. Religions have specialized in moral guidance for their believers. There is nothing wrong with this as long as we remember that health care delivery in our country involves a culturally and religiously diverse team and serves an equally diverse patient population. It should be obvious that different religious worldviews may easily lead to distinct ethical answers to a particular question of right and wrong.

In summary, clinical medical ethics may be seen as a multifaceted discipline. It relies not only on knowledge of formal systems of ethical analysis and reason but also on knowledge of clinical medicine, health science, health law, human behavior, religion, and even politics to help arrive at a reasonable moral answer.

HISTORICAL DEVELOPMENT OF ETHICS IN HEALTH CARE AND AT BAYLOR

Medical ethics has been considered throughout most of medical history to be strictly within the purview of the physician. (One might think of physicians as the ultimate “vested interest” within health care delivery.) The need for formalization of institutional ethics as opposed to merely the ethics of the physicians was first carefully considered as ideas for good and evil related to medicine emerged in the 1920s, 1930s, and 1940s. World War II itself with the atrocities of Nazi medicine, the Nuremberg trials and resulting Nuremberg Code, the expanding use of human subjects in medical research, and the Belmont Report heightened interest in medical ethics across the world of Western medicine.

Events such as the Tuskegee study (1932–1972) made it abundantly clear that medical ethics could not be trusted to the medical profession alone, even in a nontotalitarian state. During this 40-year study of the natural progression of syphilis, illiterate African Americans suffering with the disease were repeatedly lied to about their condition and its treatment (they were given none), all under the guise of advancing medical science. The physician researchers published reports of their work without drawing any ethical challenge from either editors or readers. This obvious moral indifference or ignorance occurred even though effective treatment was available for syphilis, which these patients were denied! These events must have had an impact on individual physicians and administrators; however, no clear information is available on the specific impact of these events on institutional ethics at Baylor.

Thus, at Baylor, as with almost all other medical institutions of the time, the realization that institutions had an important role to play in clinical medical ethics dawned slowly and, despite the obvious abuses in research ethics, was eventually driven more by day-to-day clinical ethics issues. Ethics has always been essential to the healing professions. Indeed, as a healer, it is the physician's attention to ethics that allows him or her to be a true professional rather than a mere technician.

The roots of clinical medical ethics go back to the time of Hippocrates, some 2500 years ago. The ancient Greek physicians were concerned not merely with what they could do but with what they should do. They were clearly concerned with ends, goals, and ethics. For example, they articulated such basic ethical concepts for good medical practice as beneficence, nonmaleficence, confidentiality, and fidelity.

In the earliest Hippocratic writings, it can be seen that the ancient Greek physicians proposed 3 ends, or goals, for medicine:

  • Do away with the suffering of the sick (i.e., cure the patient).
  • Reduce the violence of illness (i.e., alleviate pain and other symptoms even if a cure is not possible).
  • Refuse treatment to those who are “overmastered by their illness,” recognizing that, at times, the most appropriate goal for healers is to allow nature to run its course (2).

Physicians followed all 3 goals until approximately the second half of the 20th century, when advances in medical technology began to blind them to the third goal. Medications (such as pressor drugs to maintain falling blood pressure), machines (such as dialysis or mechanical ventilators), and even solid organ transplants supplanted the function of failing organs.

Ultimately, death itself was thwarted, albeit temporarily, by cardiopulmonary resuscitation (CPR). Before this technique, when patients died in American hospitals, they were simply pronounced dead. Finis. The family and priest, rather than the physician and nurse, were the primary players in the drama of death. Once successful CPR was reported in the medical literature, the technique rapidly spread across all hospitals. Dr. Billy Oliver, a Baylor internal medicine specialist during that time, reported that without any real thought, physicians, nurses, and hospitals rushed out to be trained in the new lifesaving technique, applying it to every patient who died in the hospital. These practitioners of the time were practicing medicine by technological imperative; that is, because they could, they should, assuming it was always good to resuscitate a patient who had died.

Within a very few years, however, it became apparent that the results of CPR were not always an unmitigated good. CPR frequently turned an otherwise peaceful death into a chaotic death. When patients did on occasion survive, they were frequently left with profound brain injury, were dependent on artificial life support, such as breathing machines, or were otherwise unable to live outside a medical institution. Not only physicians but also patients and families began to ask what were in essence ethical questions: Just because we can do CPR, should we do CPR in the case of every single death? Is age a factor? Should a 40-year-old be treated with this lifesaving technology differently than an 80-year-old? Does underlying condition matter? For instance, is it significant ethically if the patient has advanced metastatic cancer at the time of the CPR as opposed to a simple, uncomplicated myocardial infarction? If CPR restores a patient's heartbeat but the patient is left with irreversible brain injury and is dependent on “artificial life support,” is it acceptable to stop that support and allow the patient to die?

Questions such as these could not be answered by medical science alone but required moral reflection, which set physicians, nurses, clergy, and others to debating among themselves. Ultimately, these debates were taken to courts of law. The most famous of those cases was that of Karen Ann Quinlan.

Ms. Quinlan was a young woman of 19 when she suffered a respiratory arrest (one of our modern euphemisms for “she died”). Although cardiac function was restored and respiratory function was supplanted by a machine, Ms. Quinlan's brain never recovered. She was in what was then believed to be a coma (now better diagnosed as a persistent vegetative state). After Ms. Quinlan had been in this condition for more than 6 months, her family approached the physicians and nurses who were caring for her and asked that the mechanical ventilator be withdrawn. The physicians, nurses, and others at the hospital objected to this, arguing that they had an obligation to preserve life and claiming that to withdraw Ms. Quinlan's ventilator support would be tantamount to murder.

Ultimately, the dispute went to the New Jersey Supreme Court, which in 1976 made several important rulings. The court stated that a constitutional right to privacy was an important basis for withholding medical treatments. Of equal significance was the court's notion that judicial review of difficult cases such as that of Ms. Quinlan was “impossibly cumbersome.” The court recognized that judges had no special expertise in the science or art of medical practice and recommended that the physicians and family “consult with the hospital's ethics committee or like body at the hospital” (3). Although a few other committees in the American medical community had been reviewing issues of ethical import (e.g., committees determining access to dialysis), this certainly was the first time that an ethics committee was brought to the center of complex medical decision making as a matter of law.

In addition to the moral challenges brought by new technology, practitioners were confronted by social and legal changes. Doctors at Baylor were no exception, and BUMC, a Baptist affiliated hospital, was challenged by the US Supreme Court decision of Roe v Wade in 1973. The legalization of abortion in certain circumstances forced practitioners and hospitals to take a definitive moral stance on how each would approach this difficult moral problem.

Other social, political, and legal changes occurred in the 1970s and 1980s, including the development of state laws regulating informed consent, end-of-life decisions, and mental health treatment decisions. Federal law also eventually developed, such as the Patient Self-Determination Act. The health care industry itself, through the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), began to hold institutions accountable for certain ethical standards in the 1990s.

The development of a formal institutional ethics process at Baylor mirrored the changes noted above. The first attempt to address the recognized ethical issues in medicine was through a rudimentary ethics committee formed in the late 1970s. This early ethics committee had several different names, reflecting slightly different agendas over time, ranging from the committee on religion in medicine to the committee on religion and ethics in medicine to the committee on religion, ethics, and humanities in medicine. Regardless of the name, the membership essentially included physicians, a pastoral care provider, and an administrator. One might say that such a committee, even though the members were good persons, represented the vested interests of a small group within the institution. The committee largely confined itself to a few meetings per year and occasional educational events. It had little to no impact on the institution as a whole and clinical practice in particular.

It was not until 1983–1984 that new ideas were proposed about clinical ethics and the role of a true IEC for BUMC. Dr. Robert Fine, a young member of the Department of Internal Medicine, prepared a formal report suggesting that a new IEC be created. The report suggested that this committee

  • Would have a total institutional focus rather than a purely physician focus
  • Would be multidisciplinary, with representatives from the medical staff, nursing, pastoral care, social work, legal, administration, housestaff, and the community at large
  • Would be “open access” and responsive to the needs of physicians, nurses, hospital administrators, medical social workers, other members of the health care team, and, of course, patients and their families
  • Would have 3 major functions: education, policy formation, and clinical ethics consultation

This proposal was studied and debated extensively. In 1985, Baylor's medical board, hospital administration, and board of trustees approved the formation of the new IEC. Debts of gratitude are owed to many leaders of the medical staff and hospital administration for their early support in making this idea a reality. Among the key supporters were Drs. John Fordtran, chief of internal medicine; Marvin Stone, chief of oncology; and Perry Gross, chief of family practice. Strong administrative support was provided by Glen Clark and Robert Hille, executive vice presidents of the medical center, and Chaplain Joseph Gross, director of the Department of Pastoral Care. Among the early physician members of the IEC were Dr. Robert Fine, chairman; Dr. Donald Hunt, cochairman (vascular surgeon); Dr. Steven Frost (urology); Dr. Billy Oliver (internal medicine); Dr. Lloyd Kitchens (oncology); and Dr. Robert Collins (a housestaff member at the time). Dr. Kitchens played a particularly prominent role throughout the history of the IEC until his untimely death in 2001. As a prominent leader in the American College of Physicians, he was instrumental in the flow of ideas between the BUMC IEC and the ethics committee of the American College of Physicians.

THE INSTITUTIONAL PERSPECTIVE

The IEC at BUMC is organized as a committee of the medical staff and is appointed by the staff leadership. A wide array of professionals, including nurses, social workers, chaplains, administrators, legal counsel, housestaff, and community representatives, serve as equal members. Although physicians form the largest group, they make up less than half of the total committee membership. This multidisciplinary structure, which is justified by the unique issues that face an ethics committee, has significant influence on policy formation and consultation.

In the realm of policy formation, nonphysician members of the IEC quickly convinced their colleagues that ethical problems in clinical medicine went far beyond the moral concerns of physicians, patients, and families to the moral concerns of other health care workers who were involved. Accordingly, ethics consultation at Baylor was made available not only to physicians and patients (or their surrogates) but also to nurses, social workers, chaplains, and administrators. Although some medical staff initially expressed displeasure, the policy of “open access” to nonbinding consultation has gradually gained acceptance. Within 5 years of the availability of clinical ethics consults, physicians became the predominant party requesting guidance. They became so comfortable with nurses' requests for ethics consultation that some physicians would request ethics consultation specifically because the nursing staff had expressed “ethical reservations” about the course a particular case was taking.

In clinical consultation, the insight and interpersonal skills of nurses, chaplains, and social workers have proved to be especially valuable. These health care professionals frequently spend great amounts of time in dialogue with patients and their families. In addition, the insights of community representatives (members of the IEC who come from outside BUMC) have helped us understand the perspectives of those who do not share an institutional bond.

The multidisciplinary nature of the committee also led to the development of conscience clauses that protect physicians and nurses from participating in acts that they find morally objectionable. A physician and a patient might agree to withdraw treatment, necessitating the administration of morphine and subsequent discontinuation of ventilator support. Although many nurses in appropriate circumstances are comfortable with such an order, some are not. At BUMC, withdrawal-of-treatment guidelines were written so that nurses who have moral objections to carrying out such an order are free to remove themselves from a case. The same type of conscience clauses exist for professionals asked to participate in a termination of pregnancy.

Ethics education

The IEC initially determined that the most important ethics education that could occur was education of the committee itself. In 1983 and 1984, members of the committee on religion, ethics, and humanities began a formal study of the ideas behind a new, more dynamic ethics process. The IEC has continued the commitment to self-education through several mechanisms. When the committee begins new policy debates, relevant literature reflecting a variety of viewpoints is distributed to every member. Individual members then are asked to outline and critique the literature and to share their findings with the entire committee. The IEC also sends members to ethics education seminars of national import. Over the years, generous support by hospital administration has enabled committee members to attend national meetings on euthanasia, end-of-life decisions, pediatric and neonatal issues, and ethics consultation. These seminars have allowed committee members to meet with ethics colleagues from other parts of the country.

The committee is also charged with educating BUMC staff. This mandate has been accomplished in a number of ways, including the development of medical ethics grand rounds, nursing ethics grand rounds, housestaff ethics seminars, and multidisciplinary medical ethics courses.

In the realm of community education, reaching the intended audience has been difficult. Baylor's IEC quickly showed its commitment to educating the community by developing patient education materials that described the often thorny questions that must be answered within modern hospitals, particularly in the face of critical illness. The medical center's first patient education brochure, Personal Choices: Issues Surrounding Critical Illness, was published in 1987. Written for the general public, the brochure included a glossary of frequently used medical terms and specific information on advance directives and end-of-life decisions. A few practitioners in the hospital disapproved of the brochure because they felt it was inappropriate to speak of death within the walls of the hospital. Despite those objections, it was distributed throughout the medical center before the Patient Self-Determination Act of 1991, which mandated that hospitals provide information on advance directives to patients. The BUMC brochure was one of the earliest patient education brochures of its type in the USA. It was published in the Journal of Clinical Ethics and, thus, the pioneering work of the Baylor IEC meant that its patient education materials became a prototype for materials in numerous other institutions throughout the USA. Community education has been furthered by the production of patient education videos on advance directives and patients' rights. Finally, the committee has participated in board of trustee retreats focusing on medical ethics.

Although the IEC has been largely successful in its role as ethics educators, the IEC clearly has had some problems. Not all departments of the medical staff are equally receptive to ethics education. In those less receptive departments, the IEC has not led the horse to water, let alone succeeded in making it drink! Another problem is that ethics education has often been more fragmented than many experts would consider ideal. Although the IEC benefits greatly when physicians and nurses sit down in the same room and discuss, in a respectful manner, different appreaches to difficult ethical problems, the same cannot be said for much of the ethics education within BUMC. Although the medical ethics grand rounds sponsored by the committee are attended by physicians and nonphysicians alike, most other ethics education seminars have tended to be unidisciplinary rather than multidisciplinary. In such conferences, the dialogue is often not as rich or as beneficial as it could be if a more diverse group of professionals were sitting together. Clearly, BUMC has been a leader in the community education process. The effort, however, has resembled a one-way conversation, with the institution putting in writing or on video its views about particular problems rather than engaging in a dialogue with the community. In the next decade, perhaps Baylor's IEC will be able to improve the community education process.

Policy development

No ethics policy or guideline can be considered perfect, but BUMC has developed practical guidelines for dealing with the often impractical matter of ethics. Furthermore, under the guidance of the IEC, policies that have significant ethical import are consistent from one policy to the next. The IEC has developed or played a major role in the development of institutional policies, including those on CPR, do-not-resuscitate orders, withdrawal of treatment, advance directives, organ procurement, determination of death, patients' rights and responsibilities, informed consent, pain management, palliative care, prevention and management of aggressive behavior, termination of pregnancy, and management of extremely low-birth-weight infants. Over the years, perhaps because of the unique nature of the committee and the perception that it can solve problems, the committee has assisted in the development of policies on adoption, the care of indigent mentally ill patients, and alcohol consumption by physicians. The committee also was involved in an institutional debate about excessive physician fees.

Policy development is a straightforward, although timeconsuming, process. The IEC starts by reviewing BUMC's institutional experience, relevant law, JCAHO requirements, and ethics publications. Then the IEC begins a drafting process that includes ongoing debate, review (when appropriate) by other committees, and submission of recommendations to the medical board and board of trustees. This process is illustrated by the committee's experience in dealing with end-of-life decisions, including withdrawal of treatment. The earliest IEC consults involved withdrawal-of-treatment requests from patients or their surrogates to physicians who felt that such action was inappropriate (much like the case of Karen Quinlan mentioned earlier). Following the process outlined above, the committee developed withdrawal-of-treatment guidelines in 1987 and 1988.

During that time, committee members had a vague sense that someday it might be possible to deal with “medical futility.” However, BUMC physicians did not have enough institutional experience with that problem to call for much time to be spent reflecting on it. By 1990, however, the committee was receiving consultations that dealt with potential medical futility. In those cases, families and patients were not petitioning physicians to stop treatments believed to be inappropriate. Instead, physicians were approaching the committee and saying that treatments should be withdrawn because, in their judgment, the treatments were no longer effective. At this time, the committee, which was facing a growing number of so-called futility consults, began to review the institution's guidelines for withdrawal of treatment. In 1992, the IEC again embarked on the process outlined above, and by 1994, a new policy clearly delineating a process for working through potential futility conflicts was presented to the medical board and approved.

The IEC always works with hospital legal counsel to make certain that BUMC will be in compliance with relevant law. Although the committee has championed the use of advance directives and patient participation in the decision-making process, the passage of the Patient Self-Determination Act in 1991 caused the committee to revise certain policies on advance directives and their distribution.

The committee pays close attention to JCAHO recommendations but does not follow them blindly. The committee has always supported patients' rights. However, when the JCAHO required that patients be informed of their rights on admission to the hospital, the committee added the requirement that patients also be informed of their responsibilities. The IEC did this because the committee believes it is inappropriate to speak of rights without describing responsibilities. The IEC looks at ethics literature when making recommendations but tries to focus on pragmatic ethical concerns rather than philosophical esoterica.

One of the lEC's overriding beliefs has been that it must develop policies or guidelines that influence process more than outcome. Committee members have always believed that the best ethical decisions in problematic cases are made at a patient's bedside, but an effective process guides the decision. Persons of good intent can follow the same process but sometimes come to different conclusions. In the view of the Baylor IEC, this is acceptable. Thus, Baylor's guidelines facilitate the decision-making process without necessarily dictating particular outcomes.

Obviously, the IEC allows a fair amount of flexibility, but some hard-and-fast rules recommended by the IEC became fixed policy when approved by the medical board and board of trustees. An example is the commitment to full CPR in all cases of sudden death within the institution unless there is a specific order to the contrary. Shortly after the first do-not-resuscitate guidelines were approved, a staff physician admitted an elderly man with metastatic colon cancer. The physician indicated to the nursing staff that the patient was being admitted to die and that no further surgery or chemotherapy was planned. Nursing staff asked the physician to write a do-not-resuscitate order so that the man would not be burdened by an inappropriate procedure. The physician replied that he had never written such an order and never would, believing it to be unethical to do so. However, he advised the staff to “walk, not run” to the patient's bedside to initiate a brief CPR and then call it off. At the time, in this medical institution and others, this process (often referred to as a “slow code” or “show code”) was not uncommon. The IEC recommended that the process stop, and the medical board agreed to approve that policy. Ultimately, the physician members of the IEC met with the recalcitrant physician and informed him that he was violating the approved policy of BUMC, which carried the authority of the highest levels of medical staff and governance. The physician was told that he had a “moral safety valve.” If he truly was opposed to writing a do-not-resuscitate order, he could have the patient go through a full CPR if that was the wish of the patient and his family (it was not), or he could have a colleague write the order, which is ultimately what happened. The patient subsequently died peacefully.

Overall, policy formation by the IEC has been a success; however, some problems are evident. Our most significant problem has been the failure to monitor compliance with institutional policy guidelines. Early in the development of the IEC, members wanted to avoid the appearance of being a “God squad” or moral police force for the institution. The committee became involved only when asked to do so. As a result, the IEC knew when a policy was being violated only if someone brought the situation to the committee's attention. New JCAHO requirements and committee members' moral sensibilities are causing the IEC to change this approach and to develop quality and compliance screens of future ethics guidelines. The first screens, which were put in place in 1995, look at compliance with advance directives policies.

Another problem with policy formation concerns the mechanism of policy development. As society has become more involved through law and JCAHO requirements in the ethics process of medical institutions, the development of guidelines has become increasingly complex and time consuming. The last revision of the institution's withdrawal-of-treatment guidelines was nearly 2 years in the making. The development of guidelines for the management of extremely low-birth-weight infants took over a year. This complex and multidisciplinary process leads to guidelines that must be approved by the medical board and then by the board of trustees. The typical medical leader sitting at the board level sees a final product with little insight into the law, JCAHO guidelines, or multidisciplinary debate that led to the particular policy. This problem has no easy solution. Continuing a dialogue and encouraging medical staff and trustees to follow the lEC's policy development process may help.

Clinical ethics consultation

The third function of the IEC, proposed and adopted in 1985, is consultation. Clinical ethics consultation is a developing discipline that requires knowledge of clinical medicine, human behavior, health law, religion/spirituality, and medical ethics. The goal of ethics consultation is to offer guidance in problematic areas and, when needed, attempt to resolve disputes. At BUMC, the process usually is facilitative, nondirective, and nonbinding. The IEC has traditionally viewed consults as being either formal or informal. An informal ethics consultation typically is a brief question about a matter of policy or law that takes less than 10 minutes and requires no particular documentation in the medical chart or in the minutes of the committee. This type of consultation has been too numerous to track over the years.

Formal ethics consultation involves a detailed review of a clinical case, usually with a formal note written in the chart or on another record. In 1986, the IEC sent out a memorandum to medical staff members and other professionals within the institution, indicating that the IEC was “open for business” as ethics consultants for problematic cases. That year, 5 cases were submitted to the committee. Two cases were brought by members of the nursing staff for review of a decision that had already been reached. Over the next 4 years, from 1987 through 1990, 38 formal consultations were brought to the IEC. A few were retrospective, but most involved prospective or contemporaneous consultation in which committee recommendations clearly influenced the outcome. From 1991 through 1994, the IEC received requests for 76 formal consultations. Formal ethics consults continued to expand from that time on, as shown in the Figure.

By looking at the 1994 data, the sources of referral and the primary issues leading to consultation can be seen. In 1994, of 30 formal ethics consultations, 21 requests came directly from attending physicians, 4 from housestaff, 2 from nursing, 2 from families, and 1 from administration. Approximately half of the cases from attending physicians involved circumstances in which a nurse, social worker, chaplain, or patient specifically asked a physician to obtain an ethics consult and the physician agreed. Although any of these people may request consultation, the experience is more palatable when the team as a whole seeks guidance and accepts the process.

In the area of patients and families requesting consultation, changes have occurred. Although the ethics consultation process has always been open to patients and families, that fact was never made widely known. The first direct family request for ethics consultation came in 1987. In 1994, 2 cases came from families without going through an intermediary, and in 1995, 4 requests came directly from patients or families. Since that time, ethics consultation requests coming directly from patients or families have stayed stable at around 4 to 5 a year. These requests are not always pleasant and are sometimes initially hostile. Angry families often telephone the chairperson of the IEC with statements such as “the doctor lied to us,” “we're going to sue the doctor,” or “those doctors are not listening to anything we say; we want a new doctor, and we want one now!” In other cases, physicians sensed hostility from families in emotionally charged situations and called for consultation, noting that family members had threatened legal action. The clinical ethics consultants have been able to defuse these explosive situations and get the physicians and families talking again. The disagreements were resolved without firing physicians, going to court, or taking other hostile and disruptive actions.

Hospitals are now required by JCAHO regulations to tell patients and their families how to access an institution's ethics process. Considering the intense feelings associated with many of these cases and the litigiousness of American society, this requirement is not a bad thing. As noted above, members of the IEC are usually able to enter the cases as “outsiders.” Because they come not as treating physicians but as a multidisciplinary group of professionals willing to listen to a wide variety of concerns and facilitate problem resolution, most parties prefer that disputes come to the IEC before going through some outside process. Recall that the movement toward ethics committees began with a court battle between family and medical institution in the Quinlan case of 1976.

What are the primary issues leading to consultation? The issues overlap, of course, but in the early 1990s, for example, the primary issue of concern in 21 cases was the appropriateness of potential decisions to withdraw treatment. Many of these cases were of the Karen Quinlan “right-to-die” variety, in which the family was seeking withdrawal or withholding of life-sustaining treatment. Many of the cases were ones in which general guidance was being sought by one or more parties, and certainly no dominant opinion had emerged on the treatment team or among the patient or family. A few cases involved circumstances in which the physicians recommended withdrawal of treatment, which the family refused. Three cases dealt primarily with patient incapacity and surrogacy. For example, from time to time incapacitated patients cannot make their wishes known, divided families are uncertain about who appropriate surrogates should be, or appropriate surrogates feel they are unable to speak for patients. Other issues that led to consultation in 1994 were 2 do-not-resuscitate situations, 2 termination-of-pregnancy cases, 1 case involving truth telling, and 1 Jehovah's Witness patient. This general pattern of cases persisted through the mid 1990s, with the number of cases growing year by year.

By 1999–2000, not only had the number of cases dramatically increased, but the ethics committee was seeing a much higher number of medical futility cases. These are cases in which the family insists on “doing everything,” and yet the treatment team feels that the only appropriate treatment is comfort care. Further background is needed to understand the changes in consultation that occurred.

Although the IEC was approached by members of the medical and nursing staff for help with medical futility cases in the early to mid 1990s, they were relatively uncommon. The ethics committee had added a section to the withdrawal of treatment policy dealing with medical futility by 1990, and specific processes were formalized for working through medical futility cases by 1995. These processes, however, relied entirely on the art of persuasion and had little legal weight to back them up.

In 1999, the Texas legislature enacted new legislation, the Texas Advance Directives Act, designed to guide end-of-life decisions in this state. This act included both a new living will and guidelines for resolving disputes over end-of-life decisions, including medical futility disputes. Dr. Robert Fine and Professor Tom Mayo, both from the Baylor IEC, had particular influence on this legislation. Dr. Fine became the lead author of the new living will for Texas and was instrumental in many other aspects of the law, including the creation of more clinically relevant definitions for terminal and irreversible illness and the development of the first legislatively endorsed clinical ethics dispute resolution mechanism in the country. Many of the contributions to state law came directly from the experience of the Baylor IEC. The full committee was regularly updated on the political negotiations that helped create the law. Many members of the committee were thus able to provide periodic insight and advice to Dr. Fine and Professor Mayo as they worked on drafting the legislation in Austin.

In the 12 months before enactment of the new law, the BUMC committee accepted 88 consults (7.3 per month), of which 14 were presented by the requesting party as explicit “futility” cases and 5 were presented as explicit “right-to-die” cases (Table).

Table
Requests for ethics consultation at Baylor University Medical Center before and after the Texas Advance Directives Act

Of the 14 explicit futility cases, 2 patients died during the consultation process, even with maintenance of all therapies except CPR. In 1 case, life-sustaining treatment was maintained for over 3 months from the date of initial consultation. In 12 cases, the family agreed to withdrawal of life-sustaining treatment and a switch to comfort care only after ethics consultation, although in one such case it took the family about a month to agree.

Of the 5 explicit “right-to-die” cases, the physicians and nurses on the treatment team agreed to withdrawal of life-sustaining treatment in each case after ethics consultation.

In the first 12 months after implementation of the new law, from September 1999 through August 2000, there were 137 requests for ethics consultation, including 27 explicit futility cases and 7 explicit right-to-die cases. In the 16 months from the implementation of the new law, from September 1999 through December 2000, there were 184 consults (11.5 per month), of which 36 were explicit futility consults and 9 were explicit right-to-die consults (Table).

Of the 36 explicit futility consults, in 29 cases, the family agreed to withdrawal of life-sustaining treatment and a switch to comfort care only following ethics consultation, with all agreeing fairly promptly. The other 5 cases were pursued through the entire dispute resolution process as outlined in the law to the point of delivering a written report to the family and initiating the 10-day waiting period. Of these 5 cases, one patient died on day 9 of the 10-day waiting period, and no alternative provider was found; an alternative provider was found for one patient, but that patient died while awaiting transfer; and in the remaining 3 cases, the family agreed to withdrawal of life-sustaining treatment within a few days of receiving the formal report from the ethics committee.

Of the 9 explicit right-to-the consults, in 6 cases the physician agreed with the request and treatment was withdrawn. In 1 case, there was a suspicion of foul play, the ethics consultation team recommended against withdrawal of life-sustaining treatment, and treatment was continued. In 1 case, the ethics consultation team agreed with the treatment team that although the patient was seriously ill, any withdrawal of treatment was premature. This patient regained mental capacity, became free of all lifesustaining treatments, and eventually went home on a palliative plan of care. Finally, in 1 case the ethics committee worked to enforce an irreversibly ill patient's wishes for withdrawal of mechanical ventilation over the objection of both his family and attending physicians. He subsequently died after that withdrawal.

Was the new law that Dr. Fine, Professor Mayo, and the BUMC IEC had such influence on perfect? Of course not, but it brought the entire state of Texas much closer to using institutionally based ethics committees as first suggested by the New Jersey Supreme Court in the Quinlan case of 1976. Furthermore, it was the first law in the country to provide specific guidelines encompassing an extrajudicial due-process mechanism for resolving ethical disagreements in medical care. It has become clear that having this dispute resolution process stated in law has

  1. Increased consults as the staff has come to see our ethics consultation process as part of a legally sanctioned mechanism as opposed to something that was simply part of our institutional culture.
  2. Changed the debate over futility within our community by placing both conceptual and temporal boundaries around the problem. Physicians are aware that if another physician or facility is willing to provide the disputed treatment, then the ethics committee is less likely to find the treatment “futile” or to be willing to enter into the 10-day process. On the other hand, families come to understand that there is a finite limit to the time that they can avoid accepting the treatment team's recommendation. They come to understand that they are not in total control of the situation. We have observed that several families, upon learning of the new law, want nothing to do with going to court and state that if this is the case, they will no longer insist on maintenance of life-sustaining treatment. In our experience, no family has chosen to go to court. In a number of our futility cases, the family has been divided. In those cases, the family members who had indicated their belief that treatment should be shifted to comfort care only were quite thankful for the process.

In the end, all of these statistics about ethics consultation cannot paint as rich a picture as a single consult; thus, an example of the richness and complexity of ethics consultation is offered with the case that follows.

CASE STUDY

A 91-year-old woman was residing in a medical intensive care unit when an ethics consult was requested regarding the appropriate intensity of treatment. Her physicians believed it was time to stop life-sustaining treatments; however, her oldest daughter, who had signed all consent forms during this hospitalization, insisted that the doctors “do everything.”

This patient had lived in her own home for the past 3.5 years with posttraumatic quadriplegia and some level of cognitive impairment leaving her bedbound and minimally able to make her wishes known. Her oldest daughter and a home care agency had cared for her fairly well, although she developed several decubiti. In the 3 weeks before ethics consultation, she was admitted to the hospital with an ischemic left leg, necessitating a left above-knee amputation. A seizure and subsequent cardiac arrest with CPR followed this amputation. Mechanical ventilation was instituted. At the time of ethics consultation, her medical problem list included quadriplegia with multiple decubiti, anoxic encephalopathy, seizure disorder, hypertension, ischemic peripheral vascular disease, and congestive heart failure. Her medical treatment consisted of mechanical ventilator support, artificial nutrition and hydration per “feeding” tube, intravenous antibiotics, antiseizure medications, and wound care. She seemed to have enough mental function to show signs of pain and distress. She received small amounts of morphine when she appeared uncomfortable.

No one other than her oldest daughter saw any signs of joy or pleasure in her life. Her daughter claimed to be able to reliably communicate with the patient. She claimed that the patient denied suffering, that the patient did not want any morphine, and that the patient wished all medical treatments to be maintained. No medical personnel were able to establish consistent and reliable communication. The daughter was unable to demonstrate any of this communication with the patient in the presence of any health care personnel, including the ethics consultant.

It turned out that the patient had 2 daughters and 1 son. The oldest daughter had been her major caretaker for the past 3.5 years, living with the patient in the patient's house. When she was questioned about her mother's values, she was very circumspect. A second daughter was wheelchair bound. The patient's only son did not come to the hospital or seem to want to participate in making any decisions. Several grandchildren visited regularly. The second daughter and the grandchildren repeatedly told the attending physicians that they did not believe the patient would choose to be kept alive in this condition. However, they were unwilling to challenge the oldest daughter, who also claimed to hold a medical power of attorney and who was clearly the dominant child in the family structure. As to what could be gleaned about the patient's values and earlier life, when she was younger and healthier, she attended a Protestant church with regularity. The patient had been a domestic worker and had been widowed for many years.

In the area of legal factors, the patient did not have a living will. The oldest daughter had claimed to have the power of attorney for her mother, and in fact, she had an older durable power of attorney for health care that was neither fully witnessed to nor notarized.

The treating physicians and nurses believed that ongoing treatment other than comfort was futile. They believed they could keep the patient alive in a medical institution almost indefinitely, but they could never make the patient well enough to return home or live without a mechanical ventilator. They were frustrated that one member of the family seemed to be pushing an agenda that seemed not to be in the best interest of the patient. In addition, they wanted to give the patient adequate morphine to control pain and were disturbed that one family member seemed to be blocking such pain relief. They were also dismayed that family members would tell them quietly that the patient would not want the ongoing treatments, and yet these family members would not say this publicly.

The consultation team—in this case, a physician clinical ethicist, chaplain, and social worker, with assistance from bedside nurses—engaged in ongoing dialogue with the family. Although the second daughter and several grandchildren continued to indicate they believed treatment should be stopped, they refused to say so directly to the oldest daughter during family meetings. In fact, they requested that both the treating physicians and ethics consultant refrain from reporting their views to the oldest daughter. All refused to directly “cross” her. All efforts to lift the “burden of decision making” from her and to help her change her mind met with failure.

After approximately 5 days of dialogue, including efforts to engage the oldest daughter spiritually, the lead ethics consultant informed the family of the new process provided for in state law for dispute resolution and provided written guidance about this. The oldest daughter still insisted that all life-sustaining treatment be maintained. A 10-day waiting period provided for in the law was invoked after the determination by the ethics committee that ongoing life-sustaining treatment was medically inappropriate, and a formal written report was given to the family. The second daughter quietly thanked the ethics consultant for this action. The oldest daughter became quite upset but indicated no intention of pursuing either transfer to another facility or of going to court as allowed for under the new law. Approximately 3 days later, the oldest daughter agreed to withdrawal of life-sustaining therapy. The patient died peacefully shortly thereafter.

What would have likely happened without ethics consultation in a case such as this? The treatment team would have continued all life-sustaining treatments as demanded by the dominant daughter with the invalid power of attorney. The patient could have lived in her horribly debilitated state, artificially maintained with a ventilator, tube feedings, and a variety of medications either in the hospital or in a nursing home setting, never to know any existence other than suffering.

In summary, ethics consultation has evolved into a reality of day-to-day medical practice. There would not be ongoing consultation if all parties involved did not see the process as valuable. In addition to this value at the bedside, many of the cases the IEC has dealt with over the years have provided a basis for continuing ethics education programs. Members of the IEC have prepared brief articles based upon specific consultative experiences. Such articles are published regularly in the medical staff newsletter. Ethics consultations also have a profound influence on the development and maintenance of ethics policies. Thus, overall, the ethics consultation process has been a tremendous success, and the idea has led to great good.

INSTITUTIONAL ETHICS IN THE 21ST CENTURY: THE CHALLENGES AHEAD

With the expansion in the 1990s of BUMC to a multicampus health care system, it became apparent that a single ethics committee at the main campus could not meet all the clinical ethics demands for an entire health care system. Other institutions across the system were in various stages of development of their own ethics committees. Ultimately, a multidisciplinary team from across the health care system recommended the creation of an Office of Clinical Ethics for BHCS as well as a BHCS clinical ethics council. These two entities would have responsibility for assuring the further development and maintenance of an effective clinical ethics process at all BHCS facilities.

What does the future hold for the ethics process at BUMC and across BHCS? Clearly, there will be numerous changes in medical practice and health care delivery. The same factors that drove the development of ethics committees in the first place, such as technological innovation and social changes, will continue to challenge medical institutions and practitioners to come up with the most appropriate ethical response. As this chapter is being completed, the first “ethics forecast” report is being developed. An ethics forecast represents an attempt to look at emerging technologies, sociopolitical changes, and legal changes that have impact on the ethical stance of the organization. An essential goal is to assist all parties involved in approaching ethical challenges in a proactive rather than reactive fashion. Just as we anticipated the need for a multidisciplinary ethics committee before the JCAHO requirements or the need for patient education materials on end-of-life decision making prior to the Patient Self-Determination Act, we plan to anticipate and respond appropriately to other ethical challenges. Just as the BUMC IEC was instrumental in writing end-of-life laws for the state of Texas, we hope to have major influence on future state laws that affect the ethical aspects of medical practice.

Among the technological challenges are those related to the mapping of the human genome. Once the stuff of science fiction, the fruits of the Human Genome Project will lead to both new diagnostics and new therapeutics. The Human Genome Project will impact not only adult medicine but prenatal medicine and infertility medicine as well. Issues of patient confidentiality and preexisting conditions must be dealt with.

Other technological innovations will arise as well. At the moment, only a few individuals have received totally implantable artificial hearts that will allow them to leave the hospital. Technical concerns are currently the major determinant of who receives such a device. But once the device becomes more widely available, ethical factors will come into play. Will there be an age limit on who receives such a device? Will an implanted artificial heart move the patient up or down the transplant waiting list? What control will the patient have over his or her implanted heart? Recall that Barney Clark, the first patient to receive an artificial heart machine (a crude device that occupied an entire room and a constant tether to the patient), was given a key with which to turn off his life support.

Technological innovations will also have a great impact on costs and are likely to cause further moral tension within health care institutions. A subtle current already exists within hospitals and society in general that some treatments are simply too expensive to be provided, no matter how deserving the patient. In 2001 at Duke University Medical Center, a single patient consumed over $5 million in health care resources during an approximately 1-month time frame. That patient died despite the extraordinary expenditure. The ethics committee at BUMC has already been asked in several cases to look at issues related to basic distributive justice and fairness. For example, the committee was consulted on one case in which a single patient consumed over 500 units of blood and blood products in a very short time frame. This occurred when the blood supply was already dangerously low. Should there be limits on how much blood any one patient may receive, especially during times of national shortage? Robotic surgeries, cloning therapies, advances in brain therapeutics, the possible disappearance of the concept of brain death, the aging of the population, and growing cultural diversity are just a few of the other challenges that will confront institutions.

When an active ethics committee was approved in 1985, a colleague shook his head in dismay and said that he knew the IEC was trying to do something good, but he didn't think the IEC had any understanding of what it was getting itself into, the work it would take, or the headaches it would cause. Not infrequently, this sentiment is still expressed. It is not uncommon during ethics consultations to hear a nurse or physician of the patient in question remark, “I'm so glad you're here. I don't know how you all do this. It must create a lot of stress for you.” From the very beginning, IEC members have experienced great stress and tension among themselves and between the committee and other areas of this complex medical institution. Even so, the intellectual and spiritual rewards of serving on the IEC, and thereby serving Baylor's patients and colleagues, have far outweighed any burdens. Like the early successes of the ethics process, the lEC's future success will not depend upon a single individual but upon the working of a group of individuals who are committed to serving a greater good. Collectively, the clinical ethics committees across the entire system and the Office of Clinical Ethics will play a key role in helping the health care system and its practitioners, and society in general, face an ever-evolving brave new world.

Figure
Number of formal ethics consultations provided by the Institutional Ethics Committee at Baylor University Medical Center from 1995 to 2000.

Footnotes

Historical articles published in Proceedings will be reprinted in How We Care, volume 2. Readers who have any additional information, artifacts, photographs, or documents related to the historical articles are asked to forward such information to the Proceedings' editorial office for possible inclusion in the book version.

References

1. Keynes JM. The General Theory of Employment, Interest, and Money. London: Macmillan; 1936. pp. 303–304.
2. Admunsen DW. The physician's obligation to prolong life: a medical duty without classical roots. Hastings Center Report. 1978;8:23–24. [PubMed]
3. In re Quinlan, 70 NJ 10, 355 A.2d 647, 1976.

Articles from Proceedings (Baylor University. Medical Center) are provided here courtesy of Baylor Health Care System

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