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Informed Nonconsent: Ethical Dilemmas In Medical Decision-Making

ISSUE:  Summer 1984

As a surgical specialty, pediatric surgery is extremely gratifying to those of us who practice it because we are often called upon to correct life-threatening abnormalities in newborn infants, who, as a result of our surgical intervention, can be expected to grow and develop into healthy babies with prospects for normal, healthy lives. Such expectations, however, are not always fulfilled, and it is not uncommon for a pediatric surgeon to be confronted with an extremely difficult decision when the patient is a severely impaired newborn whose parents do not consent to surgery, a patient who would probably have died had he been born 15 years ago. In such situations, a dilemma arises for a pediatric surgeon: he is caught between the requirements of a state child abuse/neglect reporting law on the one hand and parental rights and responsibilities on the other.

As a result of my extensive involvement with the passage and implementation of Virginia’s 1975 child abuse and neglect reporting law, I have become acutely aware of how valuable these reporting laws can be for providing medical treatment to children when parents either willfully or negligently fail to do so. At the same time, it has become apparent to me that inherent in these statutes is the potential for conflict between parental legal rights and those of the child. Consider the example of a seemingly irreconcilable dilemma for the pediatric surgeon faced with a severely defective, newborn child whose parents wish to withhold lifesaving surgery or to withdraw life-support systems. It typifies the complexities of the decisions involved in present-day medical treatment.

How did we get from a point 10 or 15 years ago when practically no one understood what was meant by phrases such as “biomedical ethics” to today where one can hardly read a newspaper, magazine, or journal which does not contain an article written by a doctor, lawyer, or ethicist recounting the agonies of medical decision-making? The answer, of course, lies in the enormous success of biomedical technology. Less than a decade ago, when any one of a number of vital functions failed, the patient, whether a newborn infant or octogenarian, would die within a short time in spite of “heroic” efforts by all concerned. For example, in 1913, a surgeon writing about esophageal atresia (a condition present at birth in which the esophagus is not connected to the stomach, causing the baby to choke on its saliva, and which is now usually curable by a skilled surgeon) stated, “The physician who, after making a diagnosis of atresia of the esophagus, decides to let his little patient die undisturbed, can amply justify his course.” There was nothing else a surgeon could do in 1913 or, for that matter, for the next 30 years to prolong the life of such babies beyond a few weeks or months.

The past 25 years have truly been a golden age of medicine because the dramatic advances in our capability to support or replace vital organ functions have facilitated the performance of daring operations barely dreamed of by previous generations of surgeons. As a result, millions of Otherwise doomed lives have been salvaged, including those of babies born with esophageal atresia. As recently as 20 years ago when 1 completed my surgical training, the prototype of the modern respirator was an experimental gadget, capable of sustaining breathing for short intervals only, and, if used at all, was pressed into service just before death intervened—one of the last rites. With technical refinements through the years the respirator has become the key to survival for millions of people from tiny premature infants to adults of all ages recovering from major surgery, accidental trauma, or pulmonary disease.

During my residency, patients suffering severe kidney failure were subject to dialysis techniques which were clumsy, relatively ineffective, and laden with risk, a far cry from the relatively low-risk, modern-day techniques of hemodialysis, peritoneal dialysis, and renal transplantation.

At that time, also, physicians had few options for preventing the death of patients suffering shock in the wake of serious heart attacks. The small number of available drugs had side effects which severely limited their safety and effectiveness. Surgeons had no role aside from occasionally engaging in futile attempts to massage a failing heart. Today, patients in cardiogenic or traumatic shock receive drugs which selectively strengthen their hearts and improve circulation to vital organs. Surgeons can insert pacemakers, excise damaged portions of heart muscle that are triggering dangerous, abnormal beats, restore blood flow to weakened heart muscle, and repair the defective and damaged heart or replace it with a donor heart or a mechanical pump.

As a resident in pediatric surgery, I felt the most helpless when an infant with a serious intestinal abnormality was unable to tolerate feedings for any one of a number of possible reasons and, over a period of days to weeks, starved to death while a nutritionally inadequate mixture of dilute sugar and salt dripped ineffectively into his veins. In such a situation we would have to operate and reoperate on the infant, working against the clock. In recent years, due to the techniques of intravenous nutrition, called hyperalimentation, developed at the University of Pennsylvania Hospital in the mid 1960’s, pediatric surgeons have had a miraculous weapon with which to stave off starvation for weeks or months if necessary, assuring the ultimate success of complex operations on infants born with part of their esophagus or gastrointestinal tract blocked or missing.


As wondrous and as beneficial to mankind as they are, these extraordinary advances in biomedical technology have introduced a new dimension to the clinical practice of medicine. Treatment decisions today can no longer be made exclusively on the basis of medical outcome. They now involve issues that are ethical, legal, and economic in nature, and such decisions require the attention not only of physicians and patients but also of society at large. Granted that the aims of medical science in the service of the sick adult or child are what they have always been, namely, in the words of Oliver Wendell Holmes a century ago, “To avert disease, to heal the sick, to prolong life and to diminish suffering.” Yet contemporary doctors find that their new success in prolonging lives is a mixed blessing: life can be prolonged without healing, and, in many cases, this means increased suffering for both patients and their loved ones.

The proliferation of right-to-refuse-treatment legislation since 1976 reflects a consensus on the part of society that life not be artificially sustained in the event of terminal illness. These laws are an effort to defend the dignity of the terminally ill against the assault of the technological imperative— if you have it, use it! Thus the law in many states relieves physicians from the responsibility to utilize available technology merely because it is available when a patient decides to refuse treatment. Furthermore, under the modern doctrine of informed consent, a competent, adult patient can decide if he wants hemodialysis, chemotherapy, an operation, a blood transfusion, or to be continued on a respirator. Today’s medical practice permits doctors to offer and patients to choose not only between alternative methods of treatment but also to choose between treatment and nontreatment, between living and dying. Although the doctrine of informed consent resolves many of the ethical problems in treating the competent adult, difficult ethical problems arise when life-saving strategies are required for the survival of legal incompetents—individuals who are unable to make therapeutic decisions for themselves: infants and young children, the mentally retarded, the deranged, the senile, the comatose. Where legal incompetents are the subjects, crucial decisions on which life or death may depend must be made by others acting as their surrogates or proxies. As a pediatric surgeon in a university-hospital setting, I have had a longstanding interest in the impact of technology on therapeutic decision-making regarding legal incompetents, particularly with respect to the severely impaired newborn. I have also observed that our technological accomplishments have required the medical profession to redefine well-established concepts in order to balance ethical judgments with what is therapeutically desirable.

Let us look at our concept of death, for example. When is a person dead? Six hundred years ago a person was dead if a feather held under his nose didn’t flutter or if a glass held in front of his mouth didn’t fog. From the time William Harvey discovered the significance of the circulation of blood in the 17th century until very recently, death was present when spontaneous action of heart and lungs ceased. But modern medicine has demanded a new definition of death consistent with the use of heart/lung machines because the nourishment of organs vitally needed for transplantation is dependent upon the mechanical maintenance of heart/lung function in comatose individuals, the usual sources of such organs. The new definition of death had to allow the pronouncement of death in the face of artificially maintained heart/lung function. Thus the cessation of all brain function has now taken its place alongside heart/lung nonfunction as an acceptable definition of death in 31 states. In some states the validation of the brain-death criterion came about through a court decision. For example, in 1970, the introduction of the definition of “brain death” provided the grounds for acquittal of a team of cardiac surgeons in Richmond, Virginia who had been charged with murder for removing, for transplant purposes, the still-beating heart of a trauma victim who had no measurable brain function. In Texas, a murderer based his unsuccessful plea of innocence on the fact that his brain-dead victim’s heart was still beating when it was dissected from his chest by the cardiac transplant team, claiming that the heart surgeons actually killed the man, not he.


The judicial acceptance of the criterion of “brain death” coupled with passage of “right to die” statutes have provided some legal guidelines to physicians who previously feared withdrawing ventilatory support from patients whose dying was clearly being prolonged. Even so, the criteria for brain death are not always met when a patient suffers irreparable brain damage. When Karen Ann Quinlan fell into a drug-induced coma and stopped breathing in 1975, she still had some brain activity as measured by neurological examination and electroencephalogram and therefore did not meet the criteria for brain death under New Jersey law. Despite the absence of brain death, a court, relying upon neurological assessment that Karen would never regain her mental faculties, placed the responsibility for deciding whether or not to remove Karen from the ventilator with her father, as her guardian, and an ethics committee of the hospital where she lay comatose. The decision was made in favor of removal, and although her death was anticipated, she has continued to breathe spontaneously in her comatose state. There are thousands of individuals like Karen Quinlan whose brains have just enough electrical activity to allow them to fall outside of the current definitions of death, yet who remain beyond the pale of human existence. When and how should decisions to withdraw life-support treatment be made in such cases? Traditionally, decisions about discontinuing treatment of dying or irreversibly brain-damaged patients have been made between physicians and their patient’s families. This is no longer the case. Rather there is a tendency toward continued aggressive treatment for the terminally ill or comatose patient caused by court decrees disallowing cessation of treatment and by the threat of criminal prosecution for terminating life support systems. Accordingly, physicians must weigh the potential for malpractice actions and prosecution should they provide anything less than maximum intensive care for these patients. Examples abound where courts have required that ventilatory support be continued, that pacemakers be provided, that hemodialysis be sustained for patients who have lost even the most primitive semblance of human existence. Doctors are confused about the extent to which they are required to maintain human life when, in their best judgment and in that of those family members closest to the patient, nature should be allowed to take its course. Similar dilemmas arise for pediatric surgeons and physicians caring for severely impaired newborn infants whose duration and quality of life are predictably poor. The lives of such unfortunate infants can be prolonged by means of complex operations in conjunction with the utilization of the remarkable array of miniature life-support systems at the heart of the modern neonatal intensive-care unit.

These treatment dilemmas, whether the subject be a severely impaired newborn or a terminally ill adult on a life-support system, are more and more being resolved in courtrooms rather than hospitals, largely because of the increasing militancy of right-to-life groups seeking court intervention on behalf of such patients. Well-intentioned families and physicians have found themselves accused of an array of crimes, ranging from child neglect to premeditated murder for refusing to treat under circumstances where they have believed that the application of modern technology was inhumane and meddlesome. To date, court rulings have not been sufficiently uniform to provide clear guidelines for decision-making in these troublesome cases. Two basic issues characterize the typical case: the first issue addresses the question of whether or not the quality of life, as opposed to a right to life, can ever be a justifiable criterion for decision-making; the second issue posits the question of who will be the decision-maker.

An example of a judicial decision where the criterion of the quality of life was rejected in favor of right to life can be found in a 1974 Maine case involving an irreparably deformed newborn with esophageal atresia whose parents were taken to court on a neglect petition because of their refusal to consent to lifesaving esophageal surgery. The judge ordered the operation, stating that “at the time of live birth there does exist a human being entitled to the fullest protection of the law. The most basic right enjoyed by every human being is the right to life itself.” This principle was reiterated in a Massachusetts case in which a probate court judge ordered cardiac surgery for a deaf, mentally retarded infant with congenital rubella, holding that “the proposed cardiac surgery is not merely a life prolonging measure, but indeed is for the purpose of saving the life of this child regardless of the quality of life.”

On the other hand, the quality of life was recognized as a valid criterion for medical decision-making in the celebrated Quinlan case. Here the New Jersey Supreme Court found “germane” the Roman Catholic position as submitted by Bishop Casey: “the continuation of medical supportive measures to sustain continuation of her body functions and life constitute extraordinary means of treatment.” This decision embodied acceptance of a principle enunciated by Pope Pius XII in 1958 that “ordinary means” serve as the standard of treatment morally required of physicians. While “ordinary means” may be an acceptable standard to doctors and judges, it has not proven to be readily applicable-—the Quinlan case notwithstanding—because the phrase eludes precise definition in light of today’s rapid medical advancements. What constitutes “ordinary means” in the care of desperately ill, terminal, or comatose patients is a subject of intense dispute in both the medical and legal professions, especially since the employment of complex operations and exotic, expensive technologies have, in the eyes of many, become “ordinary.”

For example, many would regard the maintenance of a comatose patient on a ventilator as “extraordinary” treatment but would accept the feeding of such patients as “ordinary” treatment, viewing the former as optional depending upon the patient’s prognosis and the latter as obligatory, in keeping with the general perception that feeding has always been “ordinary.”

But the question arises as to whether or not it is reasonable today to distinguish between the maintenance of life by sustaining nourishment through intravenous or stomach-tube feeding and the maintenance of life by sustaining breathing by means of attachment to a ventilator. In other words, there may be situations where providing a patient with continuing nourishment might be defined as “extraordinary,” depending upon either assessment of the patient’s quality of life, the complexity of the feeding process, or both. For example, while some irreversibly comatose patients can reflexively suck food from a cup or spoon, others must receive nutrition passed down a tube into their stomachs, while still others require the surgical creation of a valve at the junction of esophagus and stomach to prevent regurgitation and aspiration of feedings—a major operation. Pediatric surgeons are familiar with the following situation which provides a striking example of how feeding may fall into the category of “extraordinary means.” There are infants who are born with all or most of their intestinal tract missing or irreversibly damaged. Through our techniques of intravenous feeding, it is now possible for us to keep these babies alive and growing for years. Such intravenous feedings are being carried out experimentally in medical centers with the full knowledge that these babies not only will be dependent upon intravenous feedings for the rest of their lives, but also that they will develop disorders related to metabolic and infectious complications of the feedings which themselves become subjects of scientific investigation.

Many parents of such infants welcome the opportunity to have them treated in this manner as a means of keeping them alive, if only for a few years. Yet can it be said of those parents who refuse to consent to participation in this experimental regimen or of those doctors who agree to withdraw nutritive support from these babies that they are guilty of child neglect or conspiracy to commit murder? I think not. Are physicians who withdraw feedings at the request of an irreversibly comatose patient’s family guilty of murder? In the example I have cited, treatment decisions arrived at through an effort to distinguish between “ordinary” and “extraordinary” means are difficult indeed.

If the quality of life is to be disregarded as a criterion for treatment decisions, what then are the implications of such a policy? What comes to mind immediately is that society must be willing to underwrite the staggering costs of maintaining all life irrespective of quality—present or potential.(In fact, we have already taken the first step toward such a societal commitment through the allocation of Medicare funds in excess of $1.5 billion per year to maintain some 60,000 patients with end-stage kidney disease on hemodialysis.) But there is something schizophrenic about a society which would, on the one hand, tell its medical and hospital professionals to maintain all life and yet, on the other hand, demand of these same professionals that they sharply curtail medical costs. Furthermore, from my perspective as a pediatric surgeon, there is more than a touch of hypocrisy in a society whose elected representatives—federal and state—threaten cutbacks in government programs that benefit already existing handicapped children and other children at risk, while considering the enactment of legislation mandating aggressive treatment of all newborn life no matter how egregiously impaired.


Can society trust families and physicians to make conscientious decisions for patients who cannot make decisions for themselves? With respect to my own specialty, I feel that decisions for or against treatment of severely impaired newborns are best made by doctors and parents together, as most recently recommended in the 1983 report of the President’s Commission for the Study of Ethical Problems in Medicine. Hospital-based ethics committees may serve as a resource when these situations arise, another recommendation of the president’s commission.

Some federal and state lawmakers are attempting to seize upon the reporting requirements of already enacted child abuse and neglect legislation as a means of coercing physicians and parents to opt for treatment in every “defective newborn” case, excluding any consideration for an infant’s quality of life as well as the attendant risks and success probabilities of new and unproved methods of treatment. I believe that such attempts at bureaucratic resolution of issues requiring a high degree of medical expertise and sensitivity to the special circumstances of each case are misguided.

Unfortunately, as in other emotionally charged issues of life and death with tangled moral, legal, and economic components (such as abortion), the question of placing responsibility for treatment decisions affecting the lives of seriously impaired newborn infants has become heavily politicized at local, state, and national levels. Articles written by pediatricians and pediatric surgeons (including myself) suggesting that potential quality of life should be a major factor in such treatment decisions have served as justification for drastic regulations recently promulgated by the Department of Health and Human Services. These proposed regulations seek to establish a telephone hotline to Washington, D.C. enabling anonymous tipsters to launch flying squads of bureaucrats and physicians to investigate complaints that “handicapped” newborn infants are being denied life-saving treatment—a mechanism similar to one of proven value in combating child abuse and neglect but one that in my opinion is inappropriate and meddlesome in the very different context of medical decision-making.

Such mischief is being compounded by the introduction of bills in the Congress and in many state legislatures (called “Baby Doe Legislation” after the heavily publicized Baby Doe case in Indiana in which a judge affirmed the decision of the parents of a newborn infant with Down’s syndrome and congenital obstruction of the esophagus not to consent to lifesaving esophageal surgery) to restrict the traditional roles of parents and physicians in making medical decisions affecting the survival of newborn infants with serious physical and mental deficits.

The extent to which quality-of-life and economic considerations should govern treatment decisions in the nation’s newborn nurseries and intensive-care units have become headline issues, sharply polarizing public opinion. In this supercharged atmosphere, inflamed by sensational new “Baby Doe” stories in the media, it is not going to be easy to maintain the tradition of dispassionate and compassionate decision-making focused on the best interests of each precious newborn life. But we must try.


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