Medical Ethics and the Pediatric Surgeon
Françoise Baylis
Donna A. Caniano
Department of Bioethics, Dalhousie Medical School, Halifax, Nova Scotia, Canada B3H 4H7.
Ohio State University College of Medicine and Public Health, Children’s Hospital, Columbus, Ohio, 43205.
Advances in pediatric surgery since the mid-1960s have presented pediatric surgeons, neonatologists, and pediatricians with difficult moral problems. Particularly troubling are those clinical situations that involve decisions about the denial or withdrawal of life-saving or life-sustaining treatment for newborns, infants, and children. These decision-making situations have been further complicated by questions concerning the appropriate use of limited health care resources.
In this chapter, a number of moral issues that frequently confront pediatric surgeons are briefly summarized. Each case report is followed by a commentary that focuses on one or more of the central issues raised in the case. However, first, a few introductory remarks on medical ethics in general, and ethical decision making in particular, are appropriate.
WHAT IS ETHICS?
Ethics is a branch of philosophy concerned with questions of right and wrong. It outlines the principles, standards, and rules of conduct that should govern our behavior and guide us in resolving our everyday moral problems. Consider, for example, the maxim primum non nocere—“above all, do no harm”—or the principle of beneficence that entreats physicians “to do or promote good.” It is from such standards and principles that we derive the physician’s commitment to sustain life and relieve suffering.
This social commitment is expressed in professional codes of both ethics and law. The overlap between law and ethics is not surprising given that, in many respects, the law institutionalizes what might be termed a minimum ethic—the law articulates a minimum set of legal rules of conduct so we may live together in relative harmony. The relation between law and ethics, however, is more complicated and controversial than one might first suppose. In addition to areas of overlap, there are important areas of difference, not the least important of which is that the law may be unethical.
WHAT IS A MORAL PROBLEM?
Much of medical ethics focuses on the moral dilemma—a type of moral problem that arises when two (or more) conflicting principles support mutually inconsistent actions. A classic example of a moral dilemma in health care is the conflict that arises between the principles of autonomy and beneficence when the patient makes a choice that does not coincide with the physician’s assessment of what is in the patient’s best interests. In such instances, the physician can act either in accordance with the patient’s expressed wishes or on the basis of the physician’s personal estimate of what is in the patient’s best interests.
Two other types of moral problems that frequently arise in the health care setting are problems of moral uncertainty and moral distress (1). Moral uncertainty arises in situations in which the nature of the moral problem is unclear. For example, one might experience some uneasiness at the fact that research subjects have quicker access to specific health care interventions, without being certain which specific moral principles and values are in conflict. As well, there is the problem of moral distress. In this case, one is confident that one understands the nature of the presenting moral problem and knows which principles and values are involved; however, one cannot pursue the chosen course of action or inaction (and “do the right thing”) because of institutional constraints, lack of decision-making authority, and so forth. These three types of moral problems are illustrated in the case reports described later.
HOW TO RESOLVE A MORAL PROBLEM
Moral problems can be addressed from a personal or group perspective. That is, efforts at resolving a moral problem can focus on a personal assessment of the rightness or wrongness of a particular course of action or inaction, or the concern can be with group decision making. Because there is good reason to promote effective shared decision making between physicians and patients (2), and because contemporary health care is now—in theory, if not always in practice—a team endeavor, the focus here is on decision making in a group context.
A number of steps are necessary to “bring about a concert of moral interests within a team” (3):
The team must develop a common moral language for discussion of moral issues.
Team members must have cognitive and practical training in how to articulate rationally their feelings about issues.
Value clarification exercises are needed.
The team must have common experiences on which to base workable moral policies.
The team must develop a moral decision-making method for all to use.
The last of these steps merits further commentary. To promote the effective resolution of difficult moral problems, it is imperative that health care teams develop and follow guidelines for moral decision making. For illustrative purposes, a set of guidelines and maxims for decision making are provided (4):
Guidelines for Decision Making
Identify the decision makers. In the case of children, this may be the patient (if the child is an emancipated or mature minor), the parent, or the legal guardian. Hereinafter, parents are referred to as the decision makers because this reflects common practice. It is understood, however, that all claims regarding parents as decision makers apply equally to emancipated or mature minors and to legal guardians.
Is the patient competent?
Has the incompetent patient previously expressed feelings or preferences?
Who is the legal guardian?
Gather all medical data.
What is the illness and its prognosis?
Is observation, consultation, or testing necessary for further clarification?
Define the available treatment options.
What options are available?
With each option, what is the likelihood of cure or amelioration?
What are the risks of an adverse effect?
Determine the professionally accepted treatment options.
To a reasonable medical certainty, does each option offer the possibility of cure, amelioration of illness, or diminution of pain and suffering?
Solicit value data from all involved parties.
Who are the involved parties?
What is their degree of closeness to the patient?
Who holds conflicting feelings or values?
Has the basis for the conflict been clarified?
Achieve a consensus resolution.
Have all parties articulated their viewpoint?
Is acceptance of the chosen option voluntary?
Might correction of factual deficiencies resolve the dispute?
Would a mediator (e.g., ethics consultant) or ethics committee be helpful?
Support all parties despite the outcome.
Maxims for Decision Making
Good ethics begins with good facts.
Rational people of good will may hold views that are opposite and irreconcilable.
The best decision is one reached by a consensus of all concerned parties.
Legal guardianship resides with parents, but the medical team establishes the minimal level of care.
Decisions should not be made in haste.
In severe illness, there are rarely happy solutions.
In severe illness, all decisions are painful.
In pediatrics and pediatric surgery, difficult moral problems confront physicians and parents when there is severe illness and limited treatment options. The mere passage of time does not make these problems go away, nor does it necessarily make them any easier to deal with. An agreed-upon methodology for addressing these problems, however, can do much to promote effective communication between physicians and parents, and among members of the health care team. In turn, this makes possible the resolution of controversial moral problems.
CASE 1
Michael, a 4-hour-old 2.3-kg infant, was transferred from a community hospital 50 miles away. The pregnancy had been uncomplicated and considered routine. At birth, the infant experienced immediate respiratory distress and required intubation and ventilatory support. Multiple congenital anomalies were noted. Michael had an enlarged head, cyanosis with a systolic murmur, a large lumbosacral neural tube defect with absence of the skin over the lower half of the back, a low omphalocele, a cloacal exstrophy, two hemibladders with penile remnants, and bilateral club feet. Ultrasound examination of the head, heart, and kidneys showed moderate ventriculomegaly, tetralogy of Fallot, and a single left kidney.
Michael’s father, visibly upset and crying, arrived at the hospital with the maternal grandparents. He explained to the nurses that he and his wife were schoolteachers and that they had two other children, girls ages 3 and 5 years. An hour-long conference was held with the pediatric surgeon, who reviewed each of the infant’s anomalies, the plan of management, including gender reassignment, and the expected prognosis for each of the anomalies. The father, somewhat overwhelmed by all the information, asked several questions: What kind of life will our baby have? Are these defects so severe that our baby would be better off not living? Could we decide not to proceed with all these operations? Would we be doing too much in trying to save this baby?
Commentary
Typically, parents are authorized to consent to or refuse medical treatment on behalf of their children (provided their children are neither emancipated nor mature minors). This authority is conferred on parents in the belief that they are best suited to make decisions that will promote their children’s well-being—parents usually care deeply for their children and understand their children’s needs. It is also widely recognized that parents bear ultimate responsibility for their children’s care and therefore should be actively involved in making health care decisions. It is also held that because parents are responsible for shaping their children’s values and beliefs, it is reasonable for them to make health care choices based on the values they would normally teach their children (5,6).
Parental authority, however, is not absolute. To quote the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, “there is a presumption, strong but rebuttable, that parents are the appropriate decisionmakers for their infants” (italics added) (7). Specifically, when parents fail to act in the best interests of their children, the state can intervene and exercise its parens patria power to override parental choice and to promote the child’s best interests.
But what does it mean to act in a child’s best interests (8,9)? In this case, is early surgical intervention followed by repeated surgical interventions (to treat the various congenital anomalies and any sequela from previous surgery) in Michael’s best interests? Or, could one reasonably argue that the anticipated benefits of the multiple surgeries are extremely limited, that aggressive treatment likely will result in a life of extreme suffering, and as such that surgery is not in the infant’s best interests? To be sure, the prognosis is poor—even if the surgeries are successful, there is a high probability that Michael’s life will be one of dependence, chronic physical and mental disability, and multiple lifelong hospitalizations. Then again, the final outcome cannot be predicted with certainty, which necessarily complicates the decision making. As Lantos and Kohrman wrote:
The central ethical principle which guides decision making in pediatrics is that decisions should reflect the best interest of the child. This ethical principle can be applied straightforwardly only in situations in which the facts are clear and well-defined. In conditions of uncertainty, it is difficult to interpret or act on this ethical principle (10).
What is in Michael’s best interests? In the abstract, best interests might reasonably be understood as shorthand for: “On balance, given the nature of the anticipated benefits and harms and their likelihood of occurrence, it is believed that the benefits outweigh the harms.” On this understanding, a course of action with a low probability of minor harm and a high probability of significant benefit would be in the best interests of the patient. Alternatively, a course of action with a high probability of significant harm and a low probability of minor benefit would not be in the best interests of the patient. But, “in the face of inescapable perplexity, ambiguity, ignorance, uncertainty, and conflict,” (11) who determines, and on what basis, which actions and which outcomes are beneficial or harmful? Is the determining value sanctity of life, quality of life, relief of suffering, parental autonomy, family stability, and well-being, or respect for religious and cultural beliefs? Many of these values are clearly incompatible—hence, the potential for conflict among the concerned parties (e.g., physicians, other members of the health care team, parents) in determining what is in a child’s best interests.
In addition to concerns about the child’s best interests, there may be concerns about the family’s best interests (12). Whereas some argue that family interests are irrelevant and that an ethically sound decision requires a narrow focus on the child (13), others insist that family interests should not be ignored, especially when the proposed treatment will provide little or no benefit for the child, but will impose serious burdens on the family (14). In Michael’s case, there are both the short- and long-term emotional, physical, and financial consequences for the family of proceeding with aggressive treatment. For some, these consequences are not incidental to any discussion concerning the ethically appropriate course of action.
This debate aside, suppose that the family and the physician agree not to proceed with surgery (based on the child’s best interests, the family’s best interests, or some other interests). A further moral question then arises: How should Michael be managed? For example, should fluids be withheld? Should Michael be extubated? These and similar questions cannot be answered in the abstract because input from all involved parties is required (as per the guidelines for decision making cited earlier). An overriding consideration, however, is that neither the infant nor the family be abandoned. To state the obvious, in specific cases, it may be appropriate to withhold or withdraw aggressive treatment, but it is never appropriate to withhold or withdraw care and compassion. On this view, if a decision were made to forgo treatment (i.e., the multiple surgeries),
Michael would still need to be provided with warmth, sustenance (i.e., enteric feeding, hydration), adequate pain control (i.e., medication in doses not intended to hasten death or to have a persistently sleeping child), and physical contact, and his family may require emotional support.
Michael would still need to be provided with warmth, sustenance (i.e., enteric feeding, hydration), adequate pain control (i.e., medication in doses not intended to hasten death or to have a persistently sleeping child), and physical contact, and his family may require emotional support.
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