Informed Consent
To respect the child's and family's wishes, physicians must obtain informed permission from a parent or surrogate before a child can undergo any medical intervention including surgery and resuscitation. Ordinarily, resuscitation efforts do not require informed consent, because they are deemed emergency interventions and consent is implied. However, terminally ill or severely disabled children and their parents are often confronted with the decision of whether resuscitation should be attempted in the event the child's underlying disease results in cardiopulmonary arrest.
Customarily, physicians will approach the parent or surrogate about instituting a do-not-resuscitate (DNR) order when it is felt that resuscitation of the child would not be beneficial and would only prolong the time to death. When a parent or surrogate consents to a DNR order, it is under the assumption that cardiopulmonary arrest will be a direct consequence of the child's underlying disease. Surgery and anesthesia constitute a change in the child's medical status, because they introduce additional risks to the patient. Because surgeons and anesthesiologists are rarely involved in the original DNR decision, they cannot be certain that the implications of the DNR status in the perioperative setting were discussed with the patient's parent (or other surrogate). Therefore, the parent or surrogate, the surgeon, and the anesthesiologist should reevaluate the DNR order for a child who requires an operative procedure. This reevaluation process has been called "required reconsideration" and should be incorporated into the process of informed consent for surgery and anesthesia. Discussions regarding consent under these circumstances should be initiated by attending staff, particularly in hospitals with residency teaching programs in which residents may be routinely involved in the consent process.
The surgeon and anesthesiologist must approach the parents and child with compassion. There is often no previous relationship established between the patient, parents, and surgical team, precluding a brief preoperative assessment. "Active listening" is essential. The parent or surrogate should be asked about specific interventions and their understanding of the relative merits of each of these interventions during resuscitation (see Table 3 in the original guideline document).
Airway management should be determined by what is mandated by the child's condition and the surgical procedure. Specific prohibition of tracheal intubation is problematic, and beliefs and concerns must be carefully elicited and discussed. Exceptions to the injunctions against intervention should be specifically noted in the patient's medical record. The parent may agree to a temporary suspension of the DNR order during the perioperative period. If so, the temporal end point to the DNR suspension needs to be recorded as well. If an agreement cannot be obtained after thorough discussion, the wishes of the informed parent or surrogate must prevail. In some cases, the parents may feel that the burden of a therapy is not worth the potential benefits and decline the procedure. When an individual physician feels that the parent's wishes are inconsistent with his or her medical, ethical, or moral views, the physician should withdraw from the case after ensuring continuity of care (American Academy of Pediatrics [AAP], 1994) and could consider consulting the institutional ethics committee.
Role of the Surgeon
The following are operative interventions that might be considered for a pediatric patient with a DNR order:
- Provision of a support device that will enable the child to be discharged from the hospital (e.g., gastrostomy tube or tracheostomy).
- Urgent surgery for a condition unrelated to the underlying chronic problem (e.g., acute appendicitis in a terminal cancer patient)
- Urgent surgery for a condition related to the underlying chronic problem but not believed to be a terminal event (e.g., a pathologic fracture or bowel obstruction).
- A procedure to decrease pain
- A procedure to provide vascular access.
It is the duty of the operating surgeon to discuss risks of a procedure with the parent or other surrogate of any pediatric patient, including how the patient's condition might influence the risk of anesthesia.
It is expected that the surgeon will advise parents or other surrogates and the child (if developmentally appropriate) regarding operative risks and benefits and advocate a policy of required reconsideration of previous DNR orders. The results of all discussions should be documented in the patient's medical record. The surgeon should also ultimately convey the patient's wishes to the members of the entire operating room team, help operating team members understand the patient's or surrogate's wishes, and find alternate team members to replace individuals who disagree with the patient's or surrogate's wishes. With children, the difficulty arises when there is no one who is willing to honor a family's wish to continue the DNR status during the anesthesia and surgery. Stalemates such as this should be referred to the ethics committee of the institution.
Role of the Anesthesiologist
Anesthesiologists have the duty to inform the parent or other surrogate of the risks and potential benefits of intraoperative resuscitation. Required reconsideration as part of the process of informed consent for anesthesia eliminates ambiguities and misunderstandings associated with patients who have DNR orders by providing anesthesiologists with the opportunity to educate the parent (or other surrogate) to become familiar with their values and perceptions of the child's quality of life and together clarify how the child's DNR order should be interpreted perioperatively. By giving parents or surrogates and clinicians the option of deciding from among full resuscitation, limitations based on procedures, or limitations based on goals, the child's needs are individualized and better served. Regardless of the decision made by the parent or other surrogate, the individual acting on behalf of the child must be readily available for consultation during the procedure.
If DNR Orders are Suspended: Qualification of Perioperative Interval
If the family or medical personnel involved in a child's care choose to suspend DNR orders during anesthesia and surgery, it is necessary to define the duration of suspension (Clemency & Thompson, 1997). The physiologic effects of anesthesia and surgery rarely terminate at the end of the procedure, but the duration thereafter depends on the anesthetic technique used and the type of surgical procedure performed. The acute effects of most anesthetic medications generally resolve within several hours or 1 day after surgery, and most anesthesiologists visit the patient the day after a surgical procedure and document recovery status in the patient record. Recovery of respiratory function after surgery depends on preoperative pulmonary function, chronicity of illness, and length of the procedure. Some patients will experience cardiopulmonary arrest during or immediately after surgery, which may be the result of an acute and reversible complication. It is appropriate to use mechanical ventilation after surgery as long as the patient continues to show significant and sustained improvement in pulmonary function. Once the patient ceases to recover or deteriorates, withdrawal of ventilatory support should be considered. Generally speaking, the suspension of DNR orders should continue until the postanesthetic visit, until the patient has been weaned from mechanical ventilation, or until the primary physician involved in the patient's care and the family agree to reinstate the DNR order.
The surgeon and anesthesiologist should feel comfortable, and should be allowed, to reinstate a DNR order intraoperatively through consultation with the family under certain conditions. For example, if cardiac arrest occurs during surgery and it is apparent that the arrest is the result of an irreversible underlying disease or complication and that cardiopulmonary resuscitation (CPR) would only allow continued deterioration, the DNR order should be reinstated. If resuscitation measures are withheld and intraoperative arrest occurs, such a death should be classified as "expected" for quality assurance purposes rather than "unexpected." Expected deaths do not require mandatory quality assurance review (Igoe, Cascella, & Stockdale, 1993; Youngner, Cascorbi & Shuck, 1991)
