Ethical Issues in Pediatric Anesthesiology

Assent: The Role of the Patient

Although most children cannot legally consent to medical care, children should share in decision making to the extent that their development permits ( Table 5.1 ). As children grow older, participation in decision making should increase, depending on both their maturity and the consequences involved in the decision.

School-age children are developing decision-making capacity, so anesthesiologists should seek both informed permission from the parent and assent and participatory decision making from the child. School-age children are capable of using logic and reason and are able to define and relate multiple aspects of a situation. Such situations may include whether to sedate a 6-year-old before an inhalation induction, whether to use an inhalation or intravenous induction of anesthesia in an 8-year-old, and whether to insert an epidural in a 12-year-old.

Many adolescents older than 14 years of age have the ability to use abstract thought, apply complex reasoning, foresee outcomes, simultaneously evaluate multiple options, and understand concepts such as probability. Although some adolescents have cognitive abilities similar to those of adults, adolescents may be hindered by insufficient psychosocial and emotional development and they may not have developed a reasonably stable set of values. Anesthesiologists should try to fulfill the ethical requirements of consent while obtaining assent. Situations involving these aspects include obtaining consent from a 16-year-old for a sedated thoracic epidural placement for a pectus repair.

Informed Permission, the Best Interest Standard and the Harm Threshold Standard

Parents have traditionally acted as the surrogate decision makers for their children, and legally they give consent. However, surrogate consent does not fulfill the spirit of consent, which is based on obtaining an individualized autonomous decision from the patient receiving the treatment. The AAP has suggested that the proper role for the surrogate decision maker is to provide informed permission. Informed permission has the same requirements as informed consent, but it recognizes that the doctrine of informed consent cannot apply.

The best interest standard requires decision makers to select the objectively best care. It acknowledges that the cornerstone of informed consent, the right to self-determination, is inapplicable when it is impossible to know or surmise from previous interactions a child's likely preference. Using this standard requires determining (1) who will make the decision and (2) what is the best care. The difficulties arise in assuming that there is always one best choice, because if there is, it should not matter who makes the decision. In our society, acceptable decision making is broadly defined. Parents capable of participating in the decision-making process are the appropriate primary decision makers because of society's respect for the concept of the family and the assumption that parents care greatly for their children. Although a child's preferences cannot be known, it is reasonable to assume that because children will incorporate some of the parents' values as they mature, parental values are a good first approximation for the child's future values. A few have questioned the presumption that parents are the best decision makers. Objections center on the legitimacy of the parents' knowledge of the preferences of the child's future self. Although these concerns are theoretically interesting and help clinicians understand the complexities of the best interest standard, the standard is that parents have extensive leeway in determining what is in their child's best interest.

The best interest of a child can be defined by what choices fall outside the range of acceptable decision making. Criteria to make this determination include the extent of harm to the child from the intervention or its absence, the likelihood of success, and the overall risk-to-benefit ratio.

The best interest standard can guide treatment among acceptable options and determine the limits of parental decision-making authority, but the best interest standard can be indeterminate, particularly for the decision to attempt to limit parental authority. Given the broad reluctance to override parents, limiting parental authority is a high-stakes decision.

Some suggest using a harm threshold standard rather than a best interest standard to determine whether to limit parental authority. The standard for whether a decision exceeds the harm threshold is if a parental decision threatens the health and safety of the child, which is a “lower standard” than whether the decision is one of the “best” options. This harm threshold is a standard similar to the one in assessing for child maltreatment. Whether this concept of harm threshold is a new cognitive approach or is already used in determining best interest depends in large part about how the borders of acceptable decision making are established; some clinicians may use the harm threshold in determining acceptable decision making and others may not.

The harm threshold standard needs further clarification. It may not help clarify the best interest standard and it may not be useful in court, given the inconsistency in how courts assess cases. Nonetheless, at the very least, it provides another conceptual way of evaluating whether a treatment is outside acceptable boundaries.

Disclosure

The “reasonable person” standard—the legal standard for most of the United States, Canada, and other countries—requires that the information disclosed be sufficient to satisfy a hypothetical reasonable person. This standard does not define exactly what information should be given, and it does not take into account the patient's desires and needs. The “subjective person” standard suggests that informed consent should be matched to the wants and needs of the decision makers. Although this patient-centered consent better fulfills the spirit of informed consent, its greater ambiguity makes it difficult to use as a legal standard.

Rather than rely on a rote informed consent process, anesthesiologists should seek to satisfy the needs of the decision makers by meeting their information and decision-making needs. Patients and surrogates differ in the extent to which they prefer to receive information and to participate in decision making. In general, 10% to 15% of patients may prefer less information than their peers. Overall, most patients want some form of shared decision making.

Anesthesiologists should inform families about matters that the anesthesiologist feels must be communicated and about options that affect the perioperative experience (e.g., regional versus general anesthesia) and then ask whether the decision makers wish to know more. By being attentive to the words and actions of the decision makers, anesthesiologists can tailor the process. It is rare to be found liable for informed consent malpractice issues. The standard for being liable is that there is a duty, a breach of that duty, and a harm directly related to the breach of the duty. Liability in informed consent requires that the information not shared would have affected the patient's choices. Forming a bond with the parents is more effective in reducing malpractice lawsuits.

Performing patient-centered informed consent often requires communication of the anesthesiologist's opinion along with an explanation of the supporting reasons. With this information, the decision makers are better able to determine which anesthetic approach provides the most desired benefits.

Decision makers often overrate the extent of their knowledge about risks and benefits. We can increase the likelihood of the decision makers having sufficient knowledge by modifying practices. For example, informed consent documents often use poorly formatted, dense, incomprehensible text written at too high a reading level for most decision makers. Straightforward language written at an eighth-grade reading level with reader-friendly formatting permits better understanding and thus better decision making about risk, benefits, and options.

Patients may have difficulty understanding quantitative aspects of risk. Risks should be presented as absolute data (e.g., occurs 10% of time) rather than relative data compared with other treatments (e.g., decreases the risk by 50%). Some decision makers may understand frequencies better, so it is wise to include both absolute and frequency data. For example, the statement “If she has regional anesthesia, she has a 20% chance of postoperative vomiting, which means 2 of 10 people will have postoperative vomiting, and if she has general anesthesia, she has a 40% chance of postoperative vomiting, which is 4 of 10 people will have postoperative vomiting. That means that 20 more people of 100 will have postoperative vomiting if we use general anesthesia” is better than “She has a 100% more likely chance of postoperative vomiting with general anesthesia as compared with regional anesthesia.” Pictorial representations improve understanding. In the above example, a graphic may be a picture of 10 people, with regional anesthesia having 2 people in one color and general anesthesia having an additional 2 people in a different color, showing the increased risk.

Risk perceptions may be affected by whether risks or benefits are presented last. For example, oncology patients gave more weight to the last topic discussed, even though risks and benefits were presented in the same conversation. Table 5.2 lists recommendations on communications.

Informed Refusal

The requirements to achieve an informed refusal of a procedure are similar to the requirements for informed consent such that decision makers should be substantially well versed about the risks, benefits, and alternatives before declining. When parents refuse what clinicians believe is necessary care for a child who cannot participate in the decision making process, clinicians may invoke the best interest standard or incorporate the harm threshold standard. This situation is more complicated when the child expresses significant decision-making capacity and refuses nonemergent procedures. Anesthesiologists should respect the right of children (typically those over the age of 10 years) not to assent to a procedure, and they should not coerce the child to proceed. In children, particularly adolescents, the distinction between persuasion and coercion is critical. Persuasion, the act of using argument and reason to influence a patient's decision, is appropriate. Coercion, the outright use of a credible threat, manipulation, or misleading information, is not. Achieving the child's assent may necessitate further discussions with the child, parents, and other providers, and such discussions may best take place away from the operating room.

Consider a 15-year-old who is scheduled for an elective knee arthroscopy. The day before the procedure, she gave assent and her parents gave informed permission for anesthesia and surgery. She is now crying in the preoperative area and refusing to cooperate. Rather than forcibly or surreptitiously sedating her, the anesthesiologist should discuss her concerns. If she is unable to discuss the issues, the anesthesiologist should consider removing her from the area and giving her time to regain composure before readdressing the situation. Simple actions often allow the situation to be resolved. If the withdrawal of assent was in part related to anxiety, the child may assent to receiving ample premedication before returning to the holding area. Anesthesiologists must obtain her assent before administering the sedation, however, and not simply assume that forceful or surreptitious administration is justified.

“Doctor, If This Were Your Child, What Would You Do?”

Clinicians should respond to requests for advice by using medical facts to explain how different paths support specific values so that decision makers can choose the most concordant path. However, the question, “If this were your child, what would you do?” can be asked for a number of different reasons, forcing clinicians to put the question into a broader context. Do not duck this question. Not responding to this question may frustrate and confuse decision makers.

For example, parents may be declaring that they are having difficulty comprehending the overwhelming information and need help making a reasonable decision. Perhaps they are actually asking what would give their child the best chance of getting better. In this situation, clinicians should explain the reasons and values underlying their personal choice. Parents may be looking for support that they are making the right choice in an untenable situation. Clinicians should answer with their best judgment if they agree with the family. If they disagree, clinicians should lend support through comments such as “Other parents in the same situation have made the same choice,” or by acknowledging that it is normal to feel uncertain. If the family persists in asking what they should do, clinicians may wish to acknowledge that their choice might have been different. Clinicians should emphasize, however, that parental values are more valid than clinician values when choosing for their own child.

Parents may be asking for help in making a life-altering decision. One approach to this question is to offer a process for answering the question (e.g., “I would talk with the chaplain ”). Clinicians should feel comfortable admitting that they are unable to determine what they would do if in the same situation. Honesty reinforces the difficulty of the decision for the parents.

Disclosure and Apology of Medical Errors

Hiding medical errors is indecent and breaches informed consent. Fear of consequences, inadequate support, limited trust in the institution, and lack of education prevent physicians from disclosing and apologizing appropriately. Forthrightly disclosing medical errors, although upsetting, often strengthens the patient–physician relationship. Learning about a hidden medical error destroys trust and rapidly triggers legal action.

Physician apologies or sympathetic comments often are prohibited as legal evidence of wrongdoing, but disclosures of errors are permitted as legal evidence. Apologizing may influence whether patients pursue legal action and whether such action is successful. Sincere (not pro forma !) apologies and subsequent redress to prevent future occurrences improves the patient – physician relationship, minimizing the likelihood of legal action.

Physicians without expertise in disclosure and apology often botch the process. Disclosure is a process over time. Initial disclosure should take place as soon as possible after an event and should center on the medical implications. Do not speculate about cause or fault. When disclosing, it is wise to bring along an appropriate colleague who can help with the disclosure by providing psychological support for the patient and family. Soon thereafter, a specific, permanent liaison to the family should be identified. The liaison should be available to arrange meetings, explain the results of the investigation into the cause of the event, and describe plans to prevent future events. The liaison should be trained and experienced in apology and disclosure (e.g., a colleague in risk management).

An apology expresses regret or sorrow. Sincere apologies followed by consistent actions are priceless; insincere apologies are costly. It is always appropriate to apologize for the adverse effects of an event and although the standard teaching is that physicians should not assume responsibility for an event before an investigation is performed, it seems bizarre to dissemble about clear errors. As an example, after reassuring the parents that their child is unharmed, I would readily admit that because I had inadvertently given a muscle relaxant instead of an anticholinesterase, their child will require a brief stay in the intensive care unit until ready for tracheal extubation. To evade responsibility (e.g., “Somehow one drug was given when another was intended”) for a clear error mocks the apology.

Different strategies are being tested to improve disclosure and apology. An approach called “disclosure, apology, and offer” shows promise. Open disclosure, prompt and fair compensation, and a vigorous defense of acceptable care leads to a transparency that reduces adversarial relationships, contributes to patient safety, and curtails legal action and costs. Success in this program requires aligning of incentives of the clinician and hospital system. Differing incentives, such as in whether to settle or not, lead to distrust and doom the program.

Confidentially for Adolescents

The obligation to maintain confidentiality requires clinicians to protect patient information from unauthorized and unnecessary disclosure. Confidentiality is necessary for an open flow of information. Clinicians enhance trust by interviewing the adolescent in private, acknowledging the adolescent's concerns about confidentiality, and keeping promises. Emancipated and mature minors have a right to complete confidentiality. For other adolescents, if maintaining confidentiality entails minimal harm, clinicians should encourage adolescents to be forthright with parents but respect their decision not to be. If maintaining confidentiality may result in serious harm to the adolescent, clinicians may be ethically justified in notifying the parents. State laws vary in their extent of requirements.

The Pregnant Adolescent

Anesthesiologists face confidentially issues when an adolescent has a positive pregnancy test before anesthesia. Given the principles of confidentiality, it is ethically appropriate to inform only the adolescent. Because locales may statutorily prohibit sharing pregnancy information with anyone other than the adolescent, anesthesiologists must share this information with the adolescent without letting the parents know. Anesthesiologists should involve pediatricians, gynecologists, and social workers with expertise in adolescent issues in this discussion.

Matters become more complex if the clinicians and adolescent believe the case should be postponed, and the adolescent chooses not to inform her parents about the pregnancy test. Anesthesiologists must be careful not to inadvertently inform the parents of the pregnancy test while postponing anesthesia and surgery. Nor should anesthesiologists betray the adolescent by saying, “The case is postponed. If you want to know why, ask your daughter.” Although such a statement is factually true and within the letter of the law of confidentially, terse obliqueness scorns the spirit of confidentially.

The desire to tell the parents is understandable. But, I would suggest that clinicians who feel that way are too narrowly applying their own experiences and expectations. Not all parents are wise and gentle, and not all homes are safe and healthy. Confidentiality statutes specifically address concerns about child abuse in pregnant adolescents.

The extent to which anesthesiologists should protect the adolescent's confidentiality is debatable. Nonetheless, because the parents have no legal right to that information, I believe that more active deception, although less desirable, is appropriate if necessary. Successful deception avoids initiating diagnostic evaluations or treatment and does not unduly worry parents. For example, do not attribute the delay to “hearing a new murmur.” Vague, unremarkable reasons such as “an oncoming cold” are best.

It is rare to condone deception. Deception should not be undertaken without serious reservations. But, under certain circumstances, the obligation to the patient may supersede prohibitions on deception. At times, the harms of not deceiving outweigh the harms of deceiving.

The Adolescent and Abortion

Even though pediatric patients who are pregnant may be statutorily or by practice emancipated, many states require some form of parental involvement, such as parental consent or notification, before an elective abortion. If a state requires parental involvement, the ability of the minor to circumvent this regulation by seeking relief from a judge, known as judicial bypass, must be available. Requirements and enforcement of statutes vary from state to state. The need for parental involvement in a minor's planned abortion is not always legally straightforward, and it may be best to consult with hospital counsel in determining these issues. Although this is an area in which honorable people disagree, note that both the AAP and the American Medical Association (AMA) have affirmed these rights.