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Case 17: The Case of the Damaged Baby

Halfway through a research project in a newborn Intensive Care Unit, Sarah Michotte, a medical anthropologist, learned that a premature infant had not been given the state-required test for phenylketonuria (PKU), a pathological condition that can be reversed by diet and medication. Without immediate therapy, cretinism develops.

The ten-weeks' premature infant weighed only 700 grams (one and one-half pounds) and had to be fed intravenously; this may have confused the staff, since the test must be given to a baby who has had approximately six oral feedings.

The error was not discovered until two months after the test should have been given and the infant suffered permanent damage. The unit staff as a group "felt bad" about the mistake but had no one specific to blame. The house officer in charge of the case initially had finished his training in pediatric intensive care and had been transferred to another department; the nurse in charge had left her job.

In communicating with the parents, the staff did not mention an error. Instead, the working-class parents, still in their late teens, were told that the baby had a long-term incurable problem. The parents were enthusiastic about their infant and told the staff, "We'll love her anyway, God made her."

What should the anthropologist do? Leave well enough alone, protecting access to the field situation? Alert the parents that they have cause for legal action? Inform the appropriate state agency? Anonymously use the Baby Doe hotline available in the nursery?

Comment

Sue Estroff, medical anthropologist, and Larry Churchill, medical ethicist, Department of Social and Administrative Medicine, School of Medicine:

Two of the most troublesome situations for an anthropologist conducting research in a clinical setting are presented: (1) getting caught between patients and staff, and (2) being privy to unethical and perhaps illegal conduct by staff.

It is tempting to see the medical ethical problems as the same as the anthropologist's. They are not, however. The ethical problems facing the medical staff provide the context for the conflicts facing the researcher. She cannot and should not attempt to resolve the ethical dilemmas of the staff. Nor should she intervene with the parents at this point.

In a clinical research setting, both patients and staff are research subjects and informants for the anthropologist, regardless of the specific focus of the inquiry. Sarah Michotte is aware that some of her subjects, the staff, have committed acts that resulted in increased and perhaps avoidable harm to other subjects, a patient and family. First, the staff, apparently collectively, neglected to perform a test for PKU in a timely fashion. (In this and many other states this test is required by law, so there is some possibility that the staff acted illegally.) Second, they deceived the parents of the patient by (a) not telling them that under routine conditions their child's retardation might have been prevented or lessened, and (b) not telling them that staff error occurred. The child and parents were harmed by the failure to perform the test at the proper time; the parents were wronged by the subsequent deception about this error. As ethical concerns for the medical staff, the deceptions are as grievous as the error itself and the results. For the anthropologist, the deceptions and the increased damage to the child and the burden on the parents are of most concern.

In devising a plan of action, the researcher has obligations to both the patient and parents, and the staff. If the anthropologist were to take any of the actions listed at the end of the case, without first attempting to move the staff to act, she would unnecessarily violate a trust with the staff. If she fails to act at all, she colludes in the deceptions and behaves irresponsibly toward the child and parents. The researcher's goal must be to get the staff to deal with the parents and the child in the honest, responsible, and competent ways they have thus far failed to do.

Protecting access to the field is not an acceptable reason to refuse to act. This would place a greater value on the anthropologist's project than on the quality of life of parents and child. "Protecting" the parents from any pain, anger, or sense of betrayal they might feel upon hearing of the error and deception likewise does not justify inaction. Such paternalism would severely limit the knowledge and subsequent choices of the parents, compromise their opportunity to find some significance in their situation, and perhaps even restrict their abilities to care for their child appropriately. Similarly, to blow the whistle on the staff or initiate litigation without first providing the staff with a chance to generate a responsible resolution is to value punishing over restitution and repair. Whatever indignation and outrage the anthropologist may experience is secondary to concern for the welfare of the damaged child, burdened parents, irresponsible staff, and the deceit-ridden (and decidedly anti-therapeutic) relations between the staff and patient.

Sarah Michotte should first inform the senior attending physician responsible for the Intensive Care Unit of the situation. There is no mention of a person in this role in the case description, but there was undoubtedly a responsible authority supervising the resident at the time the error was made. She should request a meeting with the unit staff, the head nurse, and the resident (wherever they may be), chaired by the attending physician, to discuss the situation and decide on a course of action. There will, no doubt, be a good deal of debate about establishing that, in fact, the damage to the child could have been prevented in any case, and the difficulty of assessing the degree of increased harm to the child and burden to the parents will probably be raised. Ambiguity on a technical issue, however, should not overshadow the ethical questions for the staff. The fact of the deception remains.

The anthropologist's goal must be to restore the integrity of the staff-patient relationship without getting in the middle. This is especially important because of the nature of the child's problem, and the need for a trusting and functional relationship between the parents and other physicians and health professionals. Since PKU is genetically linked, these parents are at increased risk for having another child with the same problem. Careful regulation of diet and frequent medical monitoring are essential to the health of the current child. If these parents learn to distrust doctors and hospitals, and thereby avoid appropriate health care, their child may suffer even more damage, and their future children may needlessly have a similar fate. Again, the researcher's goal must be repair and restitution not revenge or righteousness.

One way to avoid such research dilemmas is to make prior arrangements with the staff. The anthropologist can, in the form of staff and patient consent procedures or via contract agreements with the hospital or agency, spell out a procedure that will be followed if or when a circumstance such as this occurs. A staff person can be designated to receive information from the researcher. The researcher can (and should) make explicit that she or he will report to some agreed upon authority the occurrence of unethical or illegal conduct. In this way, all informants are aware that they should not expect the researcher to collude, remain silent, or interfere in the case of a conflict. Being clear about procedures will not prevent the inevitable surge of emotion and tension surrounding these events. But it will set out an orderly, professional standard that will respect the rights and obligations of all the interested parties.

Comment

Eric J. Cassell, Clinical Professor of Public Health and Director of Cornell Program for Ethics and Values in Medicine, Cornell University Medical College:

Anthropologists who work in medicine, no matter how unique, specialized, or isolated the setting, should make themselves familiar with those concerns of physicians and other health professionals that are common to all areas of medicine. Otherwise, like Michotte in the case presentation, they are liable to misunderstand the significance of events, or even their own importance. (I believe the same advice might be extended to fieldworkers in any strange culture.)

Awareness of the problem of malpractice--its causes, prevention, and consequences--pervades medicine. But malpractice is only a special instance, albeit an extremely important one, of error in medicine. Physicians have been concerned with error and its consequences since the dawn of medicine, and there is a literature on the subject that Michotte should look into. The librarian of her hospital will undoubtedly be happy to assist her. Since in this case she has discovered evidence of not only error, but malpractice, she should read in that area as well. Because the error has already been made and is irrevocable, and no emergency exists, she would be wise to know more before she acts in any fashion.

The case is presented in a manner that implies that the error is being covered up. If that is true, the personnel involved are unsophisticated in the extreme and risk exposing themselves and their hospital to greater trouble. It is highly improbable that the diagnosis will not be discovered by the child's parents. The simple test that was not performed in a timely manner can still be done, and when the records of her neonatal care are requested by subsequent physicians--the baby will continue to require care--the error will come to light. When it does, the parents will probably bring suit. They have plenty of time to do that because the statue of limitations extends for a period of years after the child reaches 21. The chance of a very large settlement will be increased by the attempt to conceal the error.

Hospitals know these facts and many of them have instituted Risk Management programs whose function is to minimize the hospital's exposure to malpractice suits and to attempt to reduce the cost when they do occur. Malpractice insurance carriers require that they be notified as soon as a possible malpractice incident has occurred, and before suit has been brought. It is in the hospital's interest to know about the incident described in the case and to take action to both settle the case as judiciously as possible and institute procedures to prevent similar errors. That responsible staff had left the unit is irrelevant to the hospital and to them.

The chief of pediatrics in whose department this incident took place has almost certainly been made aware of its occurrence. If not, he or she has rightful cause to dismiss the physician who failed to report it. Note carefully that the doctor will be fired for failure to report the error, not for its occurrence (at least for the error described). Mistakes happen in medicine. Nobody wants them to, but they are inevitable and the consequences can be disastrous. No one likes having just killed a patient. Many physicians never enter practice or assume primary responsibility for patient care because they cannot handle the inner emotional and moral consequences of their errors.

What should Michotte do? First, as noted, she should do some reading on the problem. She should discuss the general problem of error and its management with the senior staff of the unit in which she is working. She should request their advice on how to act if she believes she has discovered an error. These discussions should have taken place when she first started her study. In doing all of this, she ought to act as if she has become a temporary but especially privileged member of the staff of the neonatal Intensive Care Unit. She is especially privileged because the staff, at their risk, have allowed her access to something without the training and socialization required of everybody else on that unit who is responsible for the lives of others. If, after all of this, she believes that an error is being concealed from a patient but is known to all those in the chain of responsibility, I believe it would be unwise of her to act independently of the social system that she has entered. This incident alone should make her aware of the complexities and burdens imposed on individual caregivers by the constant danger of error. She is not required to suspend her critical judgment out of sympathy for the staff, but if she sees them as the adversaries of both the patients and herself (an attitude implied by the case report) after she has carefully studied this problem, there may be other aspects of her work where her understanding fails.

Reader's Response

Akkaraju Sarma at Temple University wrote:

The ethical dilemma, as seen by Sarah Michotte, assumes that phenylketonuria (PKU) is simply determined by a single test and that immediate therapy must be instituted. Also, she appears to believe that when so treated, irreversible damage to the nervous system can be avoided. However, present data indicate that diet therapy should be instituted before three months of age. Literature points out (see C. Henry Kempe, Henry Silver, and Donough O'Brien, Current Pediatric Diagnosis and Treatment, p. 957, Los Altos: Lange, 1978) that 10% of newborns have classic hyperphenylalanemia in the first three to four days of life, and optimal screening is done at two weeks and later again at six weeks of age. Neurological impairment is usual but not universal. In the newborn, the differential diagnosis would include (a) Classic PKU (poor intolerance to phenylalanine is present throughout life), (b) Mild PKU (tolerance to phenylalanine is higher), (c) Transient PKU (intolerance to phenylalanine is transient, and when present, treatment with restriction of phenylalanine must be instituted), (d) Dihydropteridine reductase deficiency (features of Classic PKU are found but seizures and psychomotor retardation progress in spite of diet therapy), (e) Hyperphenylalanemia (diet therapy is not needed), (f) Tyrosonemia of the newborn (probably a benign condition), (g) Maternal PKU (virtually all are retarded and diet therapy is not indicated), and (h) Miscellaneous hyperalalanemia.

"Given the complexity of PKU, this ethical dilemma fails to give needed additional information and states only that a test was missed. What was the exact diagnosis (given for this) premature infant? The infant is said to weigh one and one-half pounds, and life would have been difficult to support at that weight unless particularly intensive care was given (presumed so here). Given the case history (of ten-weeks prematurity), the general anticipated weight of the infant at this gestational age would be close to 1,700 grams, or about three pounds.

"Sarah Michotte's first obligation is to go to the chief of the pediatric Intensive Care Unit, explain her findings, and seek clarification on the exact picture. It is unusual but not unknown that, in a complex case, errors in management occur; mechanisms to correct such errors first go through the hospital's internal system. With the sketchy picture of alleged PKU, which presumes its reversibility, the questions of Sarah Michotte's ethical obligations really avoid the other major issues that should be raised. The pattern of PKU presentation is provided above to illustrate the complexity of these issues. The medical anthropologist in this case has been provided rare access to acutely sick pediatric management information as well as steps taken in management of the case. Before taking any precipitous action, she must obtain as complete information as possible, including discussion of the issues with the head of the pediatric Intensive Care Unit. As indicated in the above comment by Eric J. Cassell, there are Hospital Risk Management programs, which include incident reports that are to be signed by the physician(s) managing the case. It is not that the anthropologist has found something out of line, but that she did not make the effort to find out what remedies were instituted. In addition to this, while the health care delivery system might benefit from the input of an anthropologist (under appropriate circumstances like the one discussed), the obligation on the part of the anthropologist must include a good reading of the materials on the problem (e.g., PKU). We certainly need good and knowledgeable persons in both aspects of the discipline.

"Finally, the role of the medical anthropologist is not to precipitate any action unilaterally that would worsen the severe malpractice crisis that pervades the situation. Fortunately, not all clinical disciplines need the same type of insurance coverage (not as yet, probably not forever), but surely we do not need to buy such coverage for medical anthropologists for now or in future. Any unilateral action without sufficient details and justification is fraught with danger.