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.²

TABLE 5-1 Graduated Involvement of Minors in Medical Decision Making*

^*This broad outline should be viewed as a guide. Specific circumstances should be taken into consideration.

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 place an epidural for postoperative analgesia 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. Anesthesiologists should try to fulfill the ethical requirements of consent while obtaining assent. Although some adolescents have cognitive abilities similar to those of adults, adolescents may be hindered by insufficient emotional development. Situations involving these aspects may include obtaining consent from a 14-year-old for anesthesia for scoliosis surgery or from a 16-year-old for an awake thoracic epidural placement for a pectus repair.

Informed Permission and the Best Interests Standard

Parents have traditionally acted as the surrogate decision makers for their children, and legally they give consent. But 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.¹ Informed permission has the same requirements as informed consent, but it recognizes that the doctrine of informed consent cannot apply.

The best interests 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. This is in part due to 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.³ A few have argued that the presumption that parents are the best decision makers needs to be more closely examined.⁴ These 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 physicians understand the complexities of the best interests standard, the standard is that parents have extensive leeway in determining what is in a child’s best interests.

One way to decide what is in the best interests of the child is to define what choices fall outside the range of acceptable decision making. Criteria to make this determination include the extent of harm to the child deriving from the intervention or its absence, the likelihood of success, and the overall risk-to-benefit ratio. In the classic Baby Doe case, a child was born with Down syndrome and duodenal atresia and was permitted to die without intervention. Public discussion ensued, and it was thought that not repairing a correctable lesion was outside the bounds of acceptable undertreatment. The case spurred passage of so-called Baby Doe regulations, which define what care must be given to certain infants. In this effort to avoid unacceptable undertreatment, some believe that such regulations cause unacceptable overtreatment of patients, primarily because regulations are crude instruments for dissecting complex clinical situations.

Parents can make bad decisions. Although anesthesiologists must respect the diversity values and the parent−child relationship, decision making that imperils the health of a child needs to be challenged. If parents are choosing unacceptable treatments, anesthesiologists should determine the basis of their judgment, address those specific concerns, and involve other clinicians both to offer an assessment of the appropriateness of care and to engage the parents in discussion. Charging parents with not acting in the child’s best interests is serious and can have significant social, fiscal, and familial ramifications. If the parents remain steadfast, however, anesthesiologists should report the situation to proper child welfare authorities for possible legal action.

Disclosure

The “reasonable person” standard, the legal standard for most of the United States, requires that the information disclosed be sufficient to satisfy a hypothetical reasonable person. However, 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 the subjective person standard 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.^5–8 In general, 10% to 15% of patients may prefer less information than their peers. Overall, a quarter of patients want to be the primary decision maker, a quarter want the physician to be the primary decision maker, and half want some form of shared decision making.^6,9,10

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). Following this baseline, anesthesiologists can 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. The likelihood of being sued based on informed consent malpractice issues is very rare. Patient-driven interactions likely reduce malpractice lawsuits.¹¹

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 patient is better able to determine which anesthetic approach provides the most desired benefits.

Informed Refusal

The requirements to achieve an informed refusal of a procedure are similar to the requirements for informed consent in 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 interests 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?

Physicians 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 physicians to put the question into a broader context.^12,13

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, physicians 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. Physicians should answer with their best judgment if they agree with the family. If they disagree, physicians 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.¹² If the family persists in asking what they should do, physicians may wish to acknowledge that their choice might have been different. Physicians should emphasize, however, that parental values are more valid than physician values when referring to their own child.

Parents may be asking for help in making a life-altering decision. One way of approaching this question is to offer a process for answering the question (e.g., “I would talk with the chaplain”). Physicians should feel comfortable admitting that 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.¹⁴ Fear, inadequate support, and lack of education prevent physicians from disclosing and apologizing appropriately.^14–18 Forthrightly disclosing medical errors, although upsetting, often strengthens the patient−physician relationship. Learning about a hidden medical error destroys trust and rapidly (and often appropriately) triggers legal action.

Physician apologies or sympathetic comments often are prohibited as legal evidence of wrongdoing.¹⁹ Nonetheless, disclosing and apologizing may influence whether patients pursue legal action and whether such action is successful.^20,21 Sincere (not pro forma!) apologies and subsequent redress to prevent future occurrences improves the patient−physician relationship, minimizing the likelihood of legal action.¹¹

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.^22–24 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.

Anesthesiologists should also acknowledge, apologize, and recommend remedies for future difficult situations such as multiple intravenous catheter insertions or a very stressful anesthetic induction.

Confidentially for Adolescents

The obligation to maintain confidentiality requires physicians to protect patient information from unauthorized and unnecessary disclosure. Confidentiality is necessary for an open flow of information.²⁵ The anesthesiologist enhances trust by interviewing the adolescent in private, acknowledging the adolescent’s concerns about confidentiality, and following through on promises. Emancipated and mature minors have a right to complete confidentiality. For other adolescents, if maintaining confidentiality entails minimal harm, physicians 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, physicians may be ethically justified in notifying the parents.²⁵

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 of the positive pregnancy test.²⁶ Because many locales 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 may become more complex if the surgeon, anesthesiologist, adolescent, and other advisors 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.

As a parent of an impregnable adolescent, I understand the desire of anesthesiologists to tell the parents. But I would suggest that anesthesiologists 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. Confidentially statutes specifically address concerns about child abuse in pregnant adolescents.

To what extent 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, attributing the delay to “hearing a new murmur” or an abnormal laboratory value “just found” are poor reasons to give to parents. 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 considered emancipated, many states require some form of parental involvement, such as parental consent or notification, before an elective abortion.^27,28 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.²⁹ 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 clearly an area in which honorable people disagree, it is worth noting that both the AAP and the American Medical Association (AMA) have affirmed these rights.^25,29,30

Children of Jehovah’s Witnesses

Jehovah’s Witnesses interpret biblical scripture as prohibiting transfusion therapy because blood holds the “life force” and anyone who takes blood will be “cut off from his people” and not earn eternal salvation.^27,28 Adults may refuse transfusion therapy because it is assumed they are making an informed decision about the risks and benefits of transfusion. However, based on the obligations of the state to protect the interests of incompetent patients, courts have uniformly intervened when parents desire to refuse transfusion therapy on behalf of their children.

Obtaining informed permission and assent for the care of a ward of a Jehovah’s Witness should address transfusion therapy. Anesthesiologists should clarify which therapy is acceptable. Synthetic colloid solutions, dextran, erythropoietin, desmopressin, and preoperative iron are usually acceptable. Note that erythropoietin is available in two forms: lyophilized, and dissolved in saline with trace concentrations of albumin. Jehovah’s Witnesses who accept albumin will accept either formulation, whereas those who refuse albumin should be offered the lyophilized formulation. Some Jehovah’s Witnesses will accept the removal and return of blood in a continuous loop (e.g., cell saver blood). The family should understand, however, that in a life-threatening situation, the anesthesiologist will seek a court order authorizing the administration of life-sustaining blood. In instances in which the likelihood of requiring blood is high or the local judiciary is not that familiar with case law for Jehovah’s Witnesses, the anesthesiologist may choose to obtain a court order in advance of the operation.

A common concern is the sudden need for an emergent transfusion in a healthy child undergoing a low-risk procedure. In emergencies, based on the obligation to protect children, anesthesiologists should take the legally correct and ethically appropriate action to protect the child by transfusing blood without a court order. A court order may then be sought if desired.

For procedures that may be safely delayed, decision makers may consider postponing the procedure until the child is of sufficient age and maturity to decide about transfusion therapy. The complexity is whether the delay may increase the risk or decrease the likelihood of a good outcome. This decision requires the same balancing act as for determining the best interests for a child. Relevant factors include the quantitative change in risk or benefit and the significance of the type of risk or benefit. For example, it may be easier to wait on a procedure that is purely cosmetic than on a procedure for which waiting entails a small chance of causing a permanent injury. If individual clinicians choose to honor the wishes of a mature minor, they must ensure the fidelity of the agreement by making certain that postoperative and on-call clinicians will honor the mature minor’s wishes.

Emergency Care

Anesthesiologists should provide necessary emergent care for minors who do not have a parent available to give legal consent.³¹ Emergencies include problems that could cause death, disability, and the increased risk of future complications.

The right of an adolescent to refuse emergency care treatment turns on the adolescent’s decision-making capacity and the resulting harm from refusal of care.¹ If the harm is significant and the adolescent’s rationale is decidedly short-term or filled with misunderstanding, it becomes necessary to consider whether the adolescent has sufficient decision-making capacity for this decision. In this situation, it may be appropriate to consider what is in the best interests of the adolescent. For example, a 15-year-old football player with a cervical fracture might refuse emergency stabilization, stating that he does not want to live life without football. Most would hold that his conclusion overly values short-term implications, especially in light of the suddenness of the injury, and that he should receive emergency treatment.

Perioperative Limitations on Life-Sustaining Medical Therapy

The concept of limiting potentially life-sustaining medical therapy (LSMT) is the same for children as is for adults. Decision makers choose to limit LSMT because they do not consider the potential burdens worth the potential benefits.³³ The AAP, the American Society of Anesthesiologists (ASA), and the American College of Surgery mandate reevaluation of any limitations on LSMT before proceeding to the operating room.^34–36

Readers will note a shift from the term “Do Not Resuscitate” to terms similar to “Life-Sustaining Medical Therapy.” One purpose of this shift is to emphasize that desired limitations on medical treatment are continuous rather than dichotomous. The term “potentially” is often used to modify LSMT to emphasize the uncertainty about whether a therapy will be life sustaining.

Reevaluation of LSMT preferences for the perioperative period starts with clarifying the patient’s goals for the proposed surgery and end-of-life care (Table 5-2). Anesthesiologists should involve the patient, family, and other clinicians such as surgeons, intensivists, and pediatricians in determining what is in the best interests of the child.

TABLE 5-2 Components of a Pediatric Perioperative LSMT Discussion

LSMT, Life-sustaining medical therapy.

Adapted from Truog RD, Waisel DB, Burns JP. DNR in the OR: a goal-directed approach. Anesthesiology 1999;90:289-95; and Fallat ME, Deshpande JK. Do-not-resuscitate orders for pediatric patients who require anesthesia and surgery. Pediatrics 2004;114:1686-92.

Benefits of potentially LSMT include an improved quality of life and prolongation of life under certain circumstances. Burdens include intractable pain and suffering, disability, and events that cause a decrement in the quality of life, as viewed by the patient.³⁷ These guidelines help in considering short- and long-term goals and putting into appropriate context specific fears such as long-term ventilatory dependency, pain, and suffering.

Legitimate procedures for a child with limitations on LSMT include procedures that decrease pain, provide vascular access, enable the child to be at home, treat an urgent problem unrelated to the primary problem (e.g., appendicitis), or treat a problem that may be related but is not considered a terminal event (e.g., bowel obstruction). But seeking these interventions does not obviate the desire to avoid potential postresuscitation burdens such as need for extensive ventilator support, cognitive deficits, or physical limitations.

The goal-directed approach for perioperative limitations on LSMT permits decision makers to guide therapy by prioritizing outcomes rather than procedures.³³ After defining desirable outcomes, decision makers have anesthesiologists use their clinical judgment to determine how specific interventions will affect achieving the specific goals. Predictions about the success of interventions made at the time of the resuscitation are more accurate than predictions made preoperatively, when the quality and nature of the problems are unknown. Therapy may be guided by goals rather than specific procedures (as is done on the ward), because during the perioperative period children are cared for by dedicated anesthesiologists for brief, defined periods. It is helpful to define a goal-directed approach by discussing the acceptable burdens, the desirable benefits, and the likelihood of distinct outcomes. Most decision makers choose a goal-directed approach indicating that they would desire therapy if the interventions and burdens were temporary and reversible (i.e., if they could return to the present state without suffering too much).

Prior determination of acceptable postoperative LSMT is less critical in pediatrics, because usually parents are available in the postoperative period to make decisions regarding therapy. Nonetheless, when a sufficiently mature child participates in discussions about LSMT, anesthesiologists should ensure that the discussion incorporates the child’s preferences for postoperative trials of therapy. The willingness to undergo a trial of therapy indicates a belief that the burdens of the trial (e.g., a few days of ventilator support) may be worth the benefits (e.g., extubation of the trachea) initially, but at some point the increasing burdens may not be worth the decreasing likelihood of the benefits.

Barriers to Honoring Preferences for Resuscitation

Barriers to honoring limitations center on clinician attitudes, time pressures, and inadequate knowledge about policy, law, and ethics.^38–43 In short, whereas patients prioritize functional status in choosing to limit LSMT, clinicians tend to base their opinions on diagnosis and life expectancy.